- Most endocrinologists only check TSH and prescribe levothyroxine regardless of your symptoms, which means you may not be getting the comprehensive thyroid care you need.
- Other types of doctors, including functional medicine doctors and integrative physicians, are often more willing to run full thyroid panels and prescribe T3-containing medications.
- Over 50% of thyroid patients in meta-analyses prefer taking T4 plus T3 thyroid medication, but most endocrinologists won't even consider this option.
- Endocrinologists are trained primarily in diabetes management, so thyroid care is often not their main focus or area of expertise.
- If you feel stuck in your thyroid treatment, seeking out a doctor who is open to newer thyroid therapies and comprehensive testing can make a big difference in how you feel.
I’m not saying endocrinologists are all bad. There are some that are great.
But I am going to suggest that you will probably get better care by seeing another type of doctor if you have a thyroid problem.
I know this may sound controversial, but my experience suggests that most thyroid patients who see one will not get the special care that they think they will.
And that other doctors are often more informed about newer thyroid therapies.
Here’s why:
Reason #1. They Won’t Order The Right Tests
At most, your endocrinologist is likely to order what is called a TSH with reflex to free T4.
This particular lab test looks at your TSH and will only evaluate your free T4 if the TSH is abnormal.
But here’s the problem:
This assumes that the TSH is the best way to measure thyroid function and that other thyroid lab tests are not needed.
While it is true that TSH is the most sensitive marker of pituitary thyroid action, other thyroid lab tests can provide loads of useful information.
Some of these include free T3, total T3, reverse T3, and thyroid antibodies.
But if you were to ask your endocrinologist to order these tests they would probably scoff at you and tell you that they aren’t necessary.
The reason? They don’t really care about the results.
Having abnormal thyroid antibodies doesn’t change the fact that they want to give you levothyroxine.
Having a low T3 doesn’t matter to them either because, guess what, they still want to give you levothyroxine.
And what about having a low total T3? It won’t change their recommendation of levothyroxine with a side of more levothyroxine.
This is very unfortunate because meta-analyses show that over 50% of thyroid patients prefer taking T4 + T3 thyroid medication!
But guess what? You can’t differentiate which patients should take T3 on top of their levothyroxine without looking at free T3 and total T3 levels.
Unfortunately, you can’t expect your endocrinologist to check these lab tests.
Reason #2. They All Treat The Same Way
I shouldn’t say all because there are a handful of endocrinologists that don’t do this but the vast majority fall into this category.
Without having ever met your endo, I can say with a high degree of certainty that he or she will only check your TSH and recommend levothyroxine based on that value.
It doesn’t matter what lab tests you requested, what the results of those lab tests show, or how bad you are feeling, this is going to be their recommendation.
From their perspective, if your TSH is fine then you are fine. Period. End of story.
And this sort of mentality exists among virtually all endocrinologists.
Why?
Because this is how they are taught.
In fact, this is how all doctors are taught including family practice doctors and general practitioners.
I know because this is exactly how I was taught.
And this method of treating hypothyroidism is referred to as the standard of care.
Having a standard of care is great for patients because it means that no matter where you go in the United States, you can expect to get the same treatment.
But it only works if the treatment works.
And when it comes to thyroid management, there’s a lot of research and data to support the idea that doctors are failing thyroid patients.
If you don’t believe me, take a look at this survey of over 12,000 thyroid patients which shows, on average, they give their doctors a failing grade of 5 out of 10 and that they rate the need for new thyroid treatments as a 10 out of 10.
Does that sound like a group of people that is happy about how they are being managed?
I can tell you from personal experience that thyroid patients who take combination thyroid medications like Armour Thyroid and liothyronine have much, much higher satisfaction levels.
Reason #3. Endocrinologists Don’t Have Special Knowledge
It makes logical sense that a doctor who specializes in a specific disease would know more than a general practitioner about that condition.
And it is true in many situations, especially uncommon or rare diseases.
But hypothyroidism is not rare or uncommon.
It’s estimated that almost 12% of the population in the United States has hypothyroidism which translates to 39 million people.
But beyond this, the bigger problem has to do with how endocrinologists look at the disease:
To them, it’s a solved issue.
As far as they are concerned, if you are taking levothyroxine and your TSH is normal then whatever symptoms you are experiencing must be due to something else.
This is why you hear so many stories from thyroid patients who go in complaining about weight gain, hair loss, and fatigue, only to be told that they are getting older, that they are depressed, or that they should eat less.
Which is probably why surveys show that hypothyroid patients complain about the same symptoms for 10+ years without seeing any improvement:
And why many thyroid patients end up getting placed on anti-depressants instead of receiving changes to their thyroid medication.
The reality is that many of these problems could be solved with the right knowledge, you just aren’t likely to get it from an endocrinologist.
Reason #4. They Are More Set In Their Ways
You might think that seeing a specialist is a good thing because, perhaps, they are more willing to listen to new ideas and treatments, right?
Unfortunately, this assumption is incorrect.
By virtue of the fact that endocrinologists treat thyroid patients day in and day out, tend to be less likely to listen to alternative treatments.
I can’t tell you how many times thyroid patients reach out telling me that their doctor told them that they shouldn’t do X, Y, or Z.
But why on earth would you listen to someone who hasn’t helped you feel better for years and years?
It doesn’t make any sense, but so many people have been conditioned to believe doctors that they don’t even recognize what they are doing.
This idea of being set in their ways is further reinforced due to echo chambers.
Continuing education conferences, where new research and treatments are presented, are often supported and partially funded by pharmaceutical companies that have a financial incentive to support their own medications.
As a result, your endocrinologist just isn’t likely to hear about natural treatment options, even though simple things like changing your diet, exercising regularly, and getting more sleep have a profound effect on your thyroid.
When was the last time your doctor asked you about these things? Or did they just check your lab tests and make adjustments to your medication?
Most thyroid patients get the latter.
Reason #5. You Won’t Be Able To Convince Them To Change
The last one is kind of an extension of #4.
Many thyroid patients read information like this and they think that they can take this information to their doctor and they will be both happy to learn something new and eager to implement the new changes.
Again, unfortunately, you couldn’t be farther from the truth.
Listen to this story:
When I was in my first year of practice out of residency I had some amazing success with a husband and a wife who were among my first-ever patients.
Collectively they lost some 50+ pounds, had more energy than they could remember, got off several medications for blood pressure and cholesterol, and were overall doing fantastic.
They were obviously excited by these changes and they went to their doctor to tell him about me and what they were doing.
Instead of the doctor being happy about their success, he was upset that they went to see me and questioned my credentials and methods.
This is despite the fact that so much good had been done in their lives.
I learned pretty quickly that most doctors are really not interested in learning more or trying new things and they even feel threatened when they find someone who has more success than they do.
This isn’t a universal thing but it does exist and it’s more prominent than you would think.
The moral of the story is that doctors are not likely to change what they are doing even in the face of amazing success and positive results from others.
It’s optimistic to think that they will change their mind and try something new and I do think it’s worth a shot, but don’t be surprised when they are not interested at all.
For most thyroid patients, it’s far better and more effective to seek out a second opinion instead of trying to get your existing doctor to work with you.
Who To See Instead
With all this said, who should you see if not an endocrinologist?
Here’s what I would do:
First, start with someone who takes insurance and is local to you. Preferably your primary care doctor.
Test the waters to see if they are open to new therapies, trying new medications, and ordering the more advanced thyroid lab panel.
For most people, they won’t be completely willing to do everything you ask, but they may be somewhat receptive.
If they are, stick with them for 3-6 months to see if you can get the help you need.
If they aren’t, just move on and try to find a new doctor.
As far as which type of doctor to see, here’s where you will find the best results:
- Doctors who specialize in anti-aging medicine, bio-identical hormone management, functional medicine, integrative medicine, or natural medicine.
The biggest downside to these doctors is that they are typically expensive and don’t take insurance.
In addition, they may not even be local to you, depending on where you live.
But, in my opinion, the extra price is worth the right treatment because it’s often the difference between having symptoms like weight gain, hair loss, and fatigue versus not.
Let me leave you with this thought:
No one cares more about your life and your symptoms than you do.
And when you put how you feel in the hands of someone else, you won’t get anywhere near the same level of care that you would give yourself.
While some of this may seem discouraging, there are things that you can do to help yourself starting right now.
As I mentioned previously, simple things like changing your diet, exercising more, and taking the right supplements can have a big impact.
If you want to see which supplements I think are best for your thyroid then I’d recommend checking out this article next.
Scientific References
#1. ncbi.nlm.nih.gov/pmc/articles/PMC6471951/
#2. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)01614-3/abstract
#3. https://www.liebertpub.com/doi/abs/10.1089/thy.2017.0681?rfr_dat=cr_pub%3Dpubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&journalCode=thy
I just saw my endo last week prior to the appointment I had a blood test which showed my tsh 6.0 and t4 normal. He is treating me for Secondary Adrenal Insufficiency which he prescribed 15mg hydrocortisone and since taking these pills OI have gained water weight big time which was the reason why I wanted to see him. The endo said he doesn’t see a thyroid problem but he put me on a low dose of levothyroxine he said he should help me with my weight.
I didn’t pick up the prescription as of yet.
Hi Jeanne,
Based on your TSH you probably also have thyroid problems.
Oh dear, that hydrocortisone does cause weight gain. I got off it only too late. Will never do THAT again! And yep, those endos don’t do you any good. See my comment below.
Hi Dr. Westin,
I have been on thyroid meds since I was 20 .I am now 58 I was diagnosed with Hashimotos in my 30s by a hormone specialist. I am getting worse and missing alot of work. My Dr. does not listen and I go from increase med then decrease med. I have been looking for another Dr. They all are treating me just like you said. I am very frustrated and depressed. When I have a very bad day,my head pounds, I have chills so badI shake and then sweating at the same time. I am so exhausted and hurt so bad. I have gone to bed at times because I cannot function and have slept 24 hrs or more. I am so tired of living this way there are days ,I no longer want to live. Just praying something will be positive soon. I have tried many supplements and have not had any luck. Not saying yours will not work just spent alot of money. I have not read many of your articles do to work .I come home and go to bed or if I am in a flare up. This morning I am feeling better and was thinking about seeing an endocrinologist when your article caught my attention. Keeping my fingers crossed I will find someone in my area that will help .
Thanks
You are spot on with my experience with endos. She was only going to do TSH and I asked her to add antibody count….. and she was actually rude about it saying those labs mean nothing. Only need TSH. Good grief, my primary doc can do that. I am going back to my primary. This was my second endo. The first was more informed(she actually has Hashimoto) but has since retired.
Hi Jeanne…I also decided to go to an endocrinologist…he also prescribed levothyroxine …I had been taking armour thyroid…so I took it…had a terrible experience..I thought I was having heart attack. My pulse rate seemed to increased but more importantly my body had the shakes. It was terrible. I tried calling…didn’t get the doctorlllgot his assistant and …well they still wanted me to take it…I decided to remain on my armour thyroid. PS I NEVER went back to him. My armour thyroid was prescribed by an internist who believed in working with drugs that were as close to natural as possible. Unfortunately that doctor has passed and now I live in Florida. Although I love my internist here, he seems to be reticent to really test my thyroid, so I’m still looking. Hope this helps. BTW I threw out the levothyroxine! My Best, Pam
I’ve seen two endos now, I did blood tests on my own prior to the visit using your guidelines. They looked at my endless list of symptoms, looked at anti bodies etc. The Dr who I saw yesterday said that high antibodies are not important????? He told me to stop T4 and use T3. All my blood work points to Hashimotos as explained in your diagram but I have not been officially diagnosed. I have changed my diet, practised mindfulness, cut coffee, gluten, soy, canola etc . Only through my own knowledge. The Dr yesterday didn’t even ask me about my diet. He just said my thyroid was shrinking. I am fed up with it to be honest. Struggling to find anyone who will listen. My younger sister had her thyroid removed last year from cancer
Hi Naomi,
Unfortunately, that’s fairly common among endocrinologists. They claim to know more than they really do thus the reason for this article. I have information on how to manage your thyroid with medications, supplements, etc. on my blog and videos.
Thanks do much. I think I am going to take my journey in to my own hands. I know I don’t have cancer or anything more sinister. Instead of wasting money on Drs I could use the money to get the best supplements etc with your extremely good guidance
Hello my name is Ashley. I am 38 and was on a large dose of methimazole for hyperthyroidism for over 15 years. I got bloodwork done and my TSH was at 164 once and 127, after going to the endocrinologist i had the radiation treatment and he keeps upping the dose of my levothyroxine even though ive been cold, shaky, on my period for a month straight, lost 30 pounds in two months, am vomiting and feel full of gas. I also feel like i can not sleep whatsoever and am mentally exhausted but the vomiting and loosing 30 pounds i feel like im on speed or something all day and all night its like my body can never relax. I have literally had more bloodwork and he cant make sense of it now i am desperate and dont trust him anymore i feel like he isnt listening and just wants me to keep doing this treatment thats killing me. PLEASE HELP THANK YOU GOD BLESS
I gave up on finding an endo. They all do the same bad, outdated protocols. They’re super closed minded, too. So my Medicare coverage does me no good for thyroid–Medicare won’t pay for the progressive docs and meds that really work. It’s a shame our medical system is so dismally behind the times. So I’m still paying cash for good alternative, progressive thyroid doctors, but it’s well worth it — they know what they’re doing and it works!
I am like you. I am currently working with a progressive institute after going through a couple of endos. Endos are a waste of time for thyroid problems (I have hashimoto’s, I had a thyroids storm with Afib and was in
ICU for 5 days). I am now with DaSilva institute in Sarasota FL and I am doing very well. My hormones were severely unbalanced and I had other problems. I am on HRT and supplements and like you say: these people do things that work! I have only been with them for about 6 weeks and there is already a big improvement. But……it’s expensive and insurances do not pay.
There are good progressive, integrative MD’s out there. I’ve always found them by asking around and searching the web. They’re the only way to go if you want to feel great.
Hi, I tried to get into seeing a Functional Doctor in San Francisco, CA. I was on a waitlist, finally got an email that sheโs taking new patients.. I called 3 times over 5 days, nothing, no response at all , every time I called I left messages. But honestly I donโt want to make the 2 hr trip to that clinic as they donโt return calls and there is no other way to contact them. Wonder how the establishment patients get through to the office and speak with a human. I give up.
I would like to hear more about hyperthyroidism (Gravesโ disease)as this is my problem.
Iโm on carbimazole 5 mg and the weight gain is horrible.
I just had my most recent blood tests. YAH dropped from 4.1(after reaching a high just over 15), to 2.82. My antibodies had initially tested at 858. Was told I was very positive for Hashimoto’s disease. No mention of the need or direction for changing my diet. I researched, cleared out all related foods associated with Hashimoto’s. Began consulting with a registered dietician, nutritionist. My antibodies now show 472. No one seems to want to examine me for sources of the antibodies. Allergies? Environment? Stress?. I sought to get a reverse T3. Endocrinologist did not request/approve. I have dropped 21 lbs. Not considered overweight… Where should I turn for information/assistance next
I also have Graves Disease and my Endo isnโt doing much to help! I did my research and got the exact response as the article said I would!!
Iโm in Ardmore, Ok. My Dr. is Dr. Lauren Southward. Sheโs willing to take recommendations from my compounding Pharmacist, Russell Hobbs.
Iโm currently using natural supplements to try to help with conversion. This was recommended by Russell as a 1st line of treatment. If this doesnโt work, Iโll turn to Compounded Hormone. I already use Bioidentical Estrogens, Progesterone (capsules) and, Testosterone (cream).
I also did a phone consult with Jenny Gallager in Omaha, Nebraska. Sheโs a NP who prescribes NDPH.
Hope this helps someone.
Yes – I would also like to know about what to do for hyperthyroid! Please respond – Iโd really like to know what to do!
First, I want to say thank you for opening my eyes.
It has been about 2 years now I have been in a T3/T4 medication and feel 100% better.
I was diagnosed with hypothyroidism when I was 15 years old. At that point they put me on Synthroid. After about 3 years my primary said I should go to an endocrinologist. So like any parent, my mother found an endocrinologist and took me to him. Through the years of seeing the endocrinologist I had told him all of my symptoms whenever I went to see him. Fatigue, heart palpitations, low sex drive (of course that is when I was married) and so many more. At one point I questioned him, โare you going to test any of my other thyroid fictions?โ He replied โnoโ just your TSH. He was the endocrinologist, so I never questioned anything else. It was not until my last appointment with him when I started doing my own research. I had put on some weight and was very discouraged with myself that I could not take it off. At my appointment, I had mentioned this to him. He tapped me on my back, and said โbad genesโ. What!?!?! I was so upset when I left his office, I took matters into my own hands. I start doing massive amounts of research on hypothyroidism. I found your blog and others and became obsessed. At that point, it had been 25 years that I felt like blah every day. I thought thatโs what normal was. I did my research, and went to my primary with everything I had found. I begged her to prescribe a t3/t4 medication. She was apprehensive at first. I told her I would sign something saying it was all on me. She gave it a chance. I am so very grateful she did. Because literally in 3 days of being on the t3/t4, I felt 100% better. And to top it all off I lost 15 pounds.
Thank you again for these tidbits of information you share with us. I hope you inspire more people to do their own research and push to get themselves feeling great!! Thank you from the bottom of my heart!
Sue
I found a functional medicine practitioner who specializes in reversing your thyroid naturally! My endo dr is adamant that meds is the only solution so Iโm basically seeing him still while working on reversing the program. Itโs definitely hard to find a doctor who thinks there is an alternative to meds.
Any luck on the reversal?
I found a local doctor in my small town who practices “mainstream” medicine during the day and functional medicine in her “spare time” (but doesn’t take insurance). I have a Zoom meeting with her about 3 times a year for an hour each time (definitely of more value than the 5 minutes with a mainstream doctor!), communicate via email frequently and she also provides all my lab orders. She is amazing! She had me fill out a large stack of forms before my first in-person visit which were time-consuming but very thorough and, as she ordered the right labs immediately, my Hashimotos was pinpoint quickly.
I’ve started a protocol written about by Dr. Wentz, who is a pharmacist that also has it and figured out how to REVERSE it! The protocol involves primarily dietary modifications, some supplements, and getting sufficient rest; the details are in her book “Hashimoto’s Protocol” and are not hard to do. I’m feeling so much better! My input would be to find a functional (or integrative) physician, even if that person is only available online. We all now know how to do Zoom meetings and as Dr. Childs says, it’s worth it to find the right doctor!
Who is the dr you have zoom meetings with. Iโm interested. Thanks
Hi..interesting read! I was diagnosed (by a Family Med DR) with sub-clinical hypothyroid in 2015 and started treatment with Levo..I moved and started seeing a NP who specialized in integrated medicine..she tested for antibodies and the results came back greater than 1000. She prescribed low dose Naltrexone and my next antibodies test results a year later were 565..at least down by half! I moved again and took this prescription to a new NP who was just starting to dive in to naturopathic medicine..heโs kept me on the naltrexone(I test tomorrow for a full thyroid panel including antibodies)and, when I asked about 16 months ago, he prescribed Armour Thyroid..I really have found nurse practitioners listen and try to learn from each patient. Do I wish I had a doctor who was bringing treatments to me, instead of the other way around? Yes, but nobody cares about how I feel more than I do..so Iโm happy Iโve found someone willing to listen.
So true! Nobody cares about your health more than you! Keep going Nancy! Hopefully our medical system will catch up eventually!
The past two times, my TSH has been normal, but my T4 has been elevated. My endo blames it on the lab or says that my TSH is normal so he doesnt want to change anything. Please help
Hello sue
I can really feel for you, well what you going through and what you went through.
about 10 -15 years ago,
I had some heart trouble I had to have a stent put in.
No big deal, not until my heart started fluttering, which it had done for 35 years.
my cardiologist, put me on Amiodarone 200mg. The very worst medicine that can be given
Who are person with thyroid problem.
I got a severe ammonia, hospitalized in ICU for 11 days.
prior to that a few months before the cardiologist took me off the Amiodarone 200mg.
but it was too late.
after my hospitalization My heartbeat was 155 per second.
Me not knowing any better or image suspecting the side effect of Amiodarone 200mg.
I resumed taking my prescribed medication.
Oh yes the backtrack a little bit; I gave him all my symptoms there are in the book about Hyperthyroidism. Put me on a controlled substance.
It relieved the fatigue some what. I was taking three 20 milligrams of methana per day.
As my body demanded more, as what happens with a controlled substance, I started 4 every day.
Just continued to 5, 6, 7, 8, well I used up my month supply.
and the rest of the time I was in total misery.
and the doctor took me off it , saying that I could be becoming an addict.
Which are you already was. not now,
Like the other doctor says; medical profession in the United States sucks.
My wife has to use a roller drive. get around, what’s up another doctors decision
You prescribe a medication That made her a cripple.
I can go on and on and on
I will not get any better. With doing it myself
Read & studying the does help.
Sometimes being your own MD. WORKS
thank you for listening
I all hope that you can do better then what you doing with the regular medical profession in the US
JOHN R.
I love my endocrinologist. He does actually listen and is willing to try whatever he can to get me feeling better. I don’t have a thyroid, I was born with only half and it had to be removed a few years ago because of a goiter. I started seeing my endocrinologist shortly after my otolaryngologist put me on levothyroxine. Within a couple of visits, he ordered the advanced thyroid panel and even though my TSH looked good, he suggested that I may have been having a hard time converting my T4 to T3 and prescribed Armour Thyroid. I have been feeling better ever since until recently when my pharmacy switched me to NP Thyroid at the urging of my insurance company. I have already been told by my endocrinologist that if my numbers do not improve after a couple of weeks on the NP Thyroid he will contact my insurance company and have me placed back on Armour. He’s a really good doctor and I would highly recommend him to anyone who is looking for a endocrinologist in Northeast Ohio.
Who is your doctor in Northeast Ohio please? Are you still happy with him?
Hello. I’m in Cincinnati, Oh. Looking for a great Endo .
About 10 years ago I was totally frustrated with an endocrinologist. I moved to a new town and saw an open-minded family medicine MD who started me on a T4/T3 hormone. Then I saw another doctor for a different problem who is certified in both sports medicine and family medicine and is in charge of a wellness center. Her nurse told me she really helped her with her thyroid problems so I talked to her about my journey. She runs the necessary tests and I basically go to her now for just about everything. I still like the other doctor who is officially my PCP and does my annual Medicare wellness exam. I feel fortunate to have relationships with two good doctors, and I feel great!
I started seeing Dr. Kelly Bouldin of Ft. Worth, Texas about a year ago. I am seeing great improvements! I didn’t see any doctors for a few years prior to that. I saw a family doctor a couple of years before that but wasn’t getting more extensive care. And I saw an endocrinologist for about 5 years before that. My cortisol was up. My levothyroxine doses kept going up. And I wasn’t getting better. It can be devastating to stop treatment but I was so frustrated. My thyroid did swell up a but. I could feel it. I was diagnosed with Hashimoto’s late last year. I think i had it while I saw the endocrinologist but was never diagnosed. I wish I had had this article 10-15 years ago. I would be in a much better place now. My health us improving under Dr. Bouldin’s care. I am so glad I found her program. Its affordable! The endocrinologist was over $400 every office visit 10 years or so ago.
I swear to GOD, i changed more than ten endos to treat my thyroid. What they kill me is that they believe papers more than the patients feeling. Last year i was searching for help. Till i found you! And watching almost all of your blocks and videos on hypothyroid. Now iam on my treatment without any endo support and suggestions. I feel much comfortable than before. At least im convinced there is someone could support you out of this crash. Thank you so much Dr Westin.
I broke up with my endocrinologist last week! I was diagnosed with hypothyroidism and Hashimotoโs disease last fall-my endocrinologist prescribed me the lowest dose of levothyroxine available and Iโve been struggling. Each time we met and I told her how I was feeling she ran other tests (nothing to do with the thyroid) or sent me to other departments for assessments. It ended up being very expensive with no new diagnosis to pin my ongoing symptoms on. Last week I had my first appointment with an Internal Medicine doctor who specializes in thyroid issues. I came away with a more appropriate dose of Levothyroxine and an additional Rx for my T3. He also has a plan in place for optimizing my levels. Iโm thankful I did not struggle for 5-10 years before getting fed up and seeking a different provider.
Hey everyone,
I live on a small island in the UK and the only Person who can prescribe T3 here is an endo, i was doing well with one who was interested in the T4/T3 levels (Iโm T3 only) but this year I get a different endo over a phone consultation each time and they are only interested in TSH, I asked about LDN and itโs not prescribed here apparently. I havenโt had an antibody test for years.
So just going round in circles really! If I had spare money Iโd be keen to look into online consultation with someone out there online who can prescribe and recommend different things, can anyone recommend someone who can do this so when Iโve paid for my daughters braces I can give it a try? Do you do this Dr Westin?
Thanks!!
Hi, I’ve just been reading through your comments. I am waiting to see an endocrinologist, I have had problems 4 months pp with my son, (ppt) went hyper then hypo and prescribed levothyroxine straight away,my tsh level went back quickly to 1.82 and it’s now 2.46, my antibodies are raised slightly but my all other levels are in a good range. I asked my doctor is she could lower my dose and want to see if I can come off eventually, but after reading this I’m nervous about going.
100% agree with you. My journey has been over 15 years and it has been with your help through your emails, and my integrative medical practitioner who was willing to listen to me and prescribe based on what I showed him from this website, that I finally seem to have my levels right and have lost the weight I gained right after my thyroidectomy. You’re amazing Dr Childs! Thank you and much love from South Africa.
This is exactly my experience. I was sneered at by an endocrinologist for saying I thought I had a thyroid issue, and made to feel like a criminal by my family doctor when I eventually found a real thyroid expert who took one look at me and diagnosed me pretty much on the spot. My doctor refused to take on the prescription so I changed doctors until I found one who would. But I have never found anyone in the UK who will prescribe NDT.
I had thyroidectomy in May 2018 after which the endocrinologist put me on Levothyroxine when my lab tests revealed high hormonal levels. I was on the drug for 9 months with a two months break in between as I was not able to see the doctor on the appointed date for the review. According to the lab test carried out during my last visit to the endocrinologist in September 2019, the results were good and the drug was discontinued. I am waiting to see the endocrinologist in September 2020. However, I have been experiencing a lot of symptoms that make me scared and worried and the symptoms include: Pain in my throat and upper neck, pain in the my ears especially the right ear and gum ache. Sometimes I feel fatigue and some slight head ache. I am not able to see the endocrinologist at the moment as I have been cut off in my work place in a different country.
I need help on what could be the cause of these symptoms
Thanks
Betty
Hello Dr. Childs,
This article describes what I went through with endocrinologists spot on. I had papillary thyroid cancer & felt horrible with the help of 3 of the “best” endocrinologists in my area for six and a half years before getting fed up & dropping an endocrinologist for my total wellness doctor who has been nothing short of amazing for me. He ran the right tests & corrected all of my hormone imbalances & vitamin deficiencies. As a result I am now finally after almost 7 and a half years living my best life again. This article really spoke to me & was 1000% spot on for my experience. I couldn’t have written it better myself. Thank you for being brave enough to shed the light on how horribly wrong most endocrinologists are when treating these thyroid conditions. Something definitely needs to be changed so people do not continue to suffer for no good reason. God Bless You!
What kind of doctor is the one that helped you? Iโm in similar situation. Iโm in southern California.
Helen Harbord
Hi
Where in the UK did you find your thyroid expert? Is it under the NHS? As my G.P. Is trying to stop my T3 saying it is too expensive for the NHS!!
I would be grateful for a reply.
Thank you
G.Blyth
Thyroid issues run in my family. I’ve been treated before, but because we were military, the military dr’s don’t always really care or listen well. We retired and I thought things would be better. For the last 9-10 years, I have been on the SAME medicine and SAME amount 0.025mg. I have lost so much hair, I have issues going to the bathroom, I’m CANNOT lose weight, I’ve actually gained even though I workout. I had gotten the flu and was really sick and didn’t even lose a pound. Certain foods make me bloat as if I’m 4 months pregnant. I hardly eat anymore. I’m so incredibly frustrated. Everytime I get my lab results, she says they are normal. If I am so normal, why do I feel like crap?
I struggled for years with low energy, weight gain, low libido, brain fog and other thyroid symptoms. My doctor did the standard TSH tests which came back in the low normal range. I found a female pharmacist who specialized in helping women with hormone problems and she helped me immensely. I had saliva testing done which more accurately pinpointed my thyroid, adrenal and cortisol imbalances and gave me a direction for treatment. She recommended an integrative medicine specialist who prescribed Lyrothronine, Cytomel, and a compounded estrogen/progesterone cream. I also take supplements like selenium, vitamin D, vitamin, E, Vitamin C, and an adaptogen. I am 68 years old and feel great! I was able to convince my family doctor to keep prescribing these meds after the specialist retired, even though she is reluctant, but acknowledges that my quality of life is much improved. I recently was able to finally lose 13 lbs with my goal of 12 more. Many people have commented that I look much younger than 68 since I feel so much better. Thank you for all your great articles, I can go to my doctor with solid information to back up my requests.
I have an endo who I am pleased with and have been a patient for over 17 years. She thoroughly listens to my symptoms and not bases my treatment on lab results. Hashimotoโs is an extreme and unique creature that must be treated properly. I have struggled with leveling my medication to fit ME. I am on combination therapy (Cytomel/Levoxyl) T3/T4. I suggest for those who cannot seem to function, or, who struggle with weight issues to ask your physician to try this. Once I get the proper dosage Iโm good for quite awhile and then I fall off the cliff and have to readjust. Itโs a constant battle for me as well as Iโm sure LOTS of others. Finding the right doctor who is willing to treat โyour symptomsโ and not solely labs is who one needs to look for.
“First, you should always start with someone who takes insurance and who is local. ” Spoken like someone who lives in a larger city where these providers actually exist. So very frustrating and discouraging for those of us who do not.
Went to a few doctors years ago. Gave them all my symptoms. All those doctors recommended an endocrinologist. I did some research. I went to an endo. & told her I wanted specific tests. She did them all, but when all the numbers came back in the normal range (including TSH), and EXCEPT for TPO antibodies, which were very high, she told me I had Hashimotio’s and prescribed Levothyroxine. Later, she switched it to Synthroid, and then back to Levothyroxine again. She refused to up dosage or do any other treatments. I went off Levothyroxine and Synthroid, as they did not make any difference in my numbers. My numbers are still normal, except for TPO antibodies being anywhere from 161 to 226 or so. Still have weight gain, even on diets; hair loss, low libido, etc. I recently moved from Illinois to Cape Coral, Florida, and I am looking for a doctor who will work with me that takes insurance. If anyone knows of anyone down here, please let me know! Thanks!
I gained 15 pounds within three months about five years ago (I usually never gain weight) and felt freezing cold all the time. I see an alternative medical practitioner who is an M.D. on occasion and went to see him. He immediately ordered tests for TSH, free T4 and free T3. All came back abnormal. In the meantime I read an entire book about hypothyroidism until I understood thyroid function really well (please be aware that the reference ranges that most doctors recognize as correct are off, so educate yourself), and one on Hashimoto’s Disease. I went back to my doctor and asked for a Reverse T3 test and a number of others. Turns out I don’t have Hashimoto’s, but I don’t convert T4 to T3 very well. After trying a number of medications we settled on compounded T3, nothing else. Working out the right dose took a few months but I eventually went completely back to normal, lost the weight, have had no issues with weight control since, don’t feel cold all the time, have tons of energy and generally feel great. I highly recommend that you do whatever you need to do to find an alternative practitioner if your own doctor is not willing to order all of these tests and work with you until you find the medication that is right for you. My alternative practitioner says, “the proof is in the pudding – the most important indicator of whether your medication works for you or not is how you feel on it.” That sounds spot on to me.
Have had a different history. Was diagnosed hypothyroid and put on T4 about 1966 by a young general practitioner in Phx AZ. Moved to Europe but continued to visit the Phx Dr when back on business trips. After a few monthe the T4 wasn’t helping so my Phx Dr. added T3, when that was a very new idea. a couple of years later was put on T3 only, and found a European Dr. who was good with that. About 1993 my T3 labs started going high, and by 1998 my European Dr. took me off all thyroid supplement, unfortunately after I had developed AFib. In 2019 (back in the USA) I started to feel hypothyroid again so did my own research, read the book “The Thyroid Patient’s Manual” and got my GP to prescribe Armor thyroid at a minimum dosage. Had to persuade him to increase the dosage twice in a period of 6 months, then he changed his practice to focus on younger patients and I had to find a new doctor. Am now on my second one, have had to increase my dosage again myself, and have now been referred to an endo. Four years ago my wife showed signs of hypothyroidism and her TSH was ok clinically but slightly elevated by Integrative medicine standards, and her T4 was a bit low. It took me 6 months to get our then GP to test for T3 (it was quite low) and another 2 months to get a prescription. As soon as her T3 got back into the low end of the lab ref range our then Dr. would not renew the prescription, so I change. to the one that helped me and he renewed the prescription and then increased the T3 twice (from 5 ug/d to 15 ug/d, keeping the T4 flat at 50 ug/d. After we lost him, tne next doctors would not agree to any further increases, so I increased the dose on my own. Her T4 was below the lab ref range, and her T3 was at the top of the lab ref range. Finally our latest GP referred her to an endo and he doubled the T4 and reduced the T3 back to 10 ug/d. He did not order rT3 or any antibody tests, and he talks exactly as you describe above. Her T4 was centered in the ref range and her T3 was a bit below center at her last labs, but now she is showing hypo symptoms again. Having read this article, I am now very skeptical, but will give the endo another chance. BTW – we did try one “holistic” practitioner but he turned out to be a real dingbat and tested for a bunch of things that had nothing to do with thyroid or hormones, and recommended treatment that does not make sense. Are there good thyroid doctors that will consult remotely by computer. I am not hopeful of finding a good one locally.
Hi Dr. Childs,
After reading so very many comments from under treated thyroid patients, you must be exceedingly frustrated–and it shows in this blog! After reading so many of your articles I don’t remember reading such a strong statement as this. Bravo to you for finally posting these words!
I am frustrated myself at how I am being treated by my endo specialist. Because I always have white coat syndrome (high HR and BP) when I come in, she is convinced that raising my medication will suddenly ‘flip’ me into hyperthyroidism–even though my current dose is very low and I show no hyperthyroid symptoms. I can’t help but wonder if she is deliberately under treating me just to shut up all my complaining about hypo symptoms.
I often take my BP and HR at home and both are well within healthy limits–and the BP is often even low. I have noticed that doctors often don’t trust what patients say and must see it with their own eyes. In my case, they probably never will since I will be sitting in their office, experiencing white coat syndrome each time they take my readings.
Very frustrating. Even though I am on Medicare I probably should try to scrape together the money to find a functional medical doctor although I worry that the experience could lead into thousands of extra dollars because I have so many other non-hormonal things wrong with me.
Thanks for giving words of encouragement to seek treatment from more understanding doctors!
I am in the DFW area
in Texas. Would anyone recommend a good functional medicine doctor?
I go to obgyn Dr Bradley Axline in Flower Mound. He corrects hormone imbalances, weight issues, and thyroid problems. He will prescribe natural desiccated or T3 if you prefer and he’s been very patient and responsive to my thyroid probs. The good thing is that he does take insurance and is better than any GP or endo.
Hello Dr. Westin. Have you heard of RedRiver Health and Wellness Center? If so what do you think of them? I believe they’re headquartered in Utah but have centers in Arizona, New Mexico, Nevada and Idaho. I’ve seen their adverts on TV and they appear to help with thyroid, autoimmune and adrenal issues that are perhaps above and beyond the typical endocrinologists.
Hi again.
Due to somewhat elevated T3 therapy both myself and my wife now have TSH at a vanishingly low level and the doctors believe that indicates hyperthyroidism, possibly dangerous. Does TSH have any meaning when one is on T3 therapy?
Like I’ve said before, endos are worthless unless you have a goiter or nodules you need biopsied. They are lazy worthless Drs in the grand scheme of your treatment. pardon the harsh words but I’ve been to plenty of them….worthless
I wasted 8 years seeing an Endocrinologist in Fredericksburg, Virginia (Dr. Zavadil). I consider him a quack. I never felt good under his care as he only prescribed T4 drugs (Synthroid). He prescribed a high dose of estrogen for hot flashed and not enough progesterone so that I developed endometrial hyperplasia which caused excessive bleeding even though I was past menopause. Even though I asked him to test for T3 which came back as insufficient, he refused to prescribe Cytomel. He knew nothing about balancing my hormones which to this day are still out of balance. So I stayed fatigued, gaining weight, depressed, irritable, and awful feeling. Of course, he wanted me to take antidepressants. I was on them for years and years and suffered memory loss as one of the side effects. Never again will I take an antidepressant. They are neural toxins for the brain. I fired him and had my internal doctor treat my thyroid. Another decade wasted by this doctor (Mohit Anand) who refused to prescribe Cytomel. I moved on to an integrative doctor who took insurance. She prescribed T3 and after a year started me on Low Dose Naltrexone to help with cell penetration. My complaint with that practice is that after 2 years, they still have not identified my thyroid problem. Am I hypothyroid, do I have autoimmune issues, thyroid resistance, or Hashimotos? They refused to give me blood tests to get to the source of my thyroid problems. What is wrong with these people? They will not identity the problem which means they cannot solve the problem. Instead, they want to treat my symptoms until I drop dead. I fired them too and am now awaiting another appointment with a Physician’s Assistant with Diabetes & Thyroid Associates in Fredericksburg, VA. I have no faith in any of these people, but what else can I do? It’s trial and error, hit or miss as decades pass by. The medical community has failed me and countless others. No wonder my adrenal glands are compromised due to the stress of trying to find a competent doctor who will identify the problem and solve the problem.
So the LDN did not increase cell penetration of the T3 as hoped?
My rT3 is very high, so taking T3 did zilch. Even taking iron does zero for my very low ferritin levels. I finally found an iron absorbed by my system, with lactoferrin. Im not energetic by any means, but after a week or so of it, I can feel the difference. I take a bottle a couple times a yr as Im not testing my ferritin levels now-no practitioner who would do it. They only test hemoglobin/hematocrit, which is useless.
The majority of Americans have no access to this cash system of care, as always, thruout history. The rich will get care, the masses will die, suffering first.
Unless you have a great income, the percentage of your income needed to pay for care is way, way too high. And thatโs sad that income and wisdom/education still are so disparate.
Dr. Childs,
This is Mari Trejo. I am not even want to remember the years of suffering, anger, and frustration besides feeling very depressed and high anxiety, etc. Medications for what they said I had: phobias all kind, mentally disordered, family problems, all I needed was to getting married, and more nonsense diagnosed issues. Many years of coming to think I was loosing my mind. All this uncertainty took me to the darkest place of my life, to the point that I could not walk, eat, sleep, etc. Better stop here. Now, I have a sense of what I have, still taking antidepressants, and anxiety medications, and, of course, Livothyroxine. Now, thanks to technology and to doctors like you, I am more informed of what I might have, and what I can tryout for my hypothyroidism and probably Hashimotos. Looking for a doctor that will want to deal with my issues, and that can bring some good health to my life before my years stop.
I know I have to take tests of all my endless health issues, and right now I have to start by knowing if I have Hashimotos Hypothyroidism, after this, hopefully start getting some of your products.
Appreciate your concern and your valuable information.
No success with endos or PCP’s. Went to integrative and they are better. I would like to know how to loose the weight though. They have not helped me in that area. What tests do I need for that area of concern. I’m 66. Thanks, Dr Westin
I had a thyroidectomy three years ago, and for awhile I felt I was doing OK. Then, I got intractable hives which after many tests
can’t be ascribed to any cause, hair loss, and always feeling cold. Doctors here won’t consider anything but Synthroid, and current endo won’t consider Cytomel. If I could find a source to buy natural thyroid, I would try it by myself.
Chronic uritcaria (hives) are more common than you would think with hypothyroidism. The best way to deal with them is taking an antihistamine every day, such as Claritin or Zyrtec. You may want to consider an allergy shot if those do not help. The key is taking it everyday
I finally found a functional Dr here in MI that I like. I’ve tried3 others and decided to drive over an hour this time so far worth it. My lab numbers are doing great, got my antibodies from 489 to 67 using paleo and good supplements. I am seeing another endo soon for high cortisol but I’m sure it’s major anxiety and stress, hair loss has been horrible but lab numbers are good otherwise. Hopefully this endo has more sense. My PCP now thinks out of the box but lost about my cortisol.
I started seeing my Endo about 5 years ago. The first change he made was to incorporate Armour into my existing dosages of levo and cytomel. With the addition of Armour, I began to feel better. I can’t really explain it just an overall feeling of healthiness. So after a bit, I asked him if it was possible just to take Armour by itself without the synthetics. He said that would be fine and he decided on a dosage. I was taking 170 mg of Levothyroxine and 10 mg of cytomel. He put me on the dosage of 60 mg of Armour. I went back to see him on my follow-up visit and told him that I felt there was a problem with my dosage because I was putting on weight. He told me that he would not use thyroid medicine as a diet drug. He did agree to up my dosage to 90 mg. Following this, I lost my insurance and had no way to return for a visit. I kept feeling more lethargic, fatigue, and continued putting on more weight. I also had lost my job and could not afford Armour so I researched other options of natural thyroid. I found Nature’s thyroid and it’s cost was about a third of armor. I contacted his office and ask for them to please change my prescription to Nature Thyroid but it would have to be in a bit higher dosage because they did not make a 90. They agreed and I began taking Nature Thyroid. unfortunately my symptoms continued, so I began to do some research. I came across a conversion chart for switching from synthetic thyroid to natural thyroid. When analyzing this chart, I found that the amount of thyroid I should be taking was 146.25 mg. This opened my eyes and made sense of how I”d been feeling. I emailed my endo a copy of the chart and explained that I felt my dosage was incorrect. According to this my dosage was only two-thirds of what it should have been taking and this had been going on for over a year now. I had a new job and great insurance so I went for a physical with my primary care physician. He did blood work of course and when I went to see him, the first thing he asked was if I’d been feeling pretty run down. I said could be worse with a little snicker but I knew why I was feeling this way. I showed him the chart and he went on to tell me that my TSH level was a 45. I won’t go into this any further because anyone that has thyroid issues knows this is a serious problem. The biggest problem was that I had my thyroid removed and did radioactive iodine to kill the rest of the tissue due to thyroid cancer. I also have Hashimoto’s. So, no matter how hard the pituitary pushed for the thyroid to produce more there was no tissue there to do so. The condition had gotten so bad that when I did go for my blood work they took my temperature twice because of COVID of course and I found this strange. Out of curiosity, I asked the the office person what my temperature was. She stated my temperature was 94.8. My thyroid had been so low for so long and my body was responding best slowing everything including dropping my temperature to near hypothermic degrees. With is my research, I had found a condition called myxedema coma. This is a very serious condition and it’s brought on by untreated hypothyroidism. From what I had found, only about 50% of people who this hair’s to will survive. As you can imagine, my frustration was through the roof. I was angry. How could anyone do this? The problem with my endo is he is more concerned about how you feel than what blood work would tell you. At first I thought this was a great concept because of course we all want to feel great but in the end it didn’t really matter how I felt. He had not done blood work in a very long time and when I addressed the issue with him about feeling like my dosage was incorrect I was accused of wanting to use it as a diet drug. So I armed myself with a lot of information from mostly Medical abstracts. My primary care physician had changed my thyroid dosage to the 146.25 mg of Nature Thyroid when I had my physical. I made an appointment with my endo and in the meantime, all natural desecrated thyroid had been recalled. So I went to the appointment with my endo armed with all the knowledge that I had gained. I had decided that I wanted to try Tirosint since this was pure T4 without any fillers. I had found the calculation for people who have no thyroid after thyroidectomy and radioactive iodine based on their weight. The calculation showed that I should be on 195 mg of T4. I went into his office and as Dr Westin Child’s states he was not happy. I then was accused of not taking my thyroid as I’m supposed to causing such a high TSH. I was told that the issue with my weight was due to my diet. I was told that the thermometers that they used to take your temperature on your head are not accurate. Yet, I found this funny since his own nurse had used that method to take my temperature when I entered his office. He stated that he prescribes Armour and knows nothing of this Nature Thyroid that I was taking. Which didn’t matter since Armour was recalled also. I found this very odd since they are all versions of the same medication desiccated Pig thyroid. In the end, I was told that if I’m going to manage my own care, he refused to be my doctor any longer. He, also, knowing that my thyroid medication has been recalled did not prescribe me a different medication. He ordered blood work and told me to go see my primary care physician. I had asked for reverse T3 but instead there pot in for thyroid uptake. I was glad that he did not want to be my doctor any longer because obviously he was not very good at it. He wanted to hear nothing of what was incorrect instead he blamed everything on me. The funny thing is thar the truth is on my side because I can go to my pharmacy and get a printout of when I had my prescriptions refilled and I can go to the lab that he uses and pull all my lab work I’ve had in the last five years since I’ve seen him to prove that no blood work was done in a very long time and that I was taking my thyroid as directed. Its just mostly disheartening to me to have all of this blamed on me when there is clear evidence of his medicinal negligence. Every doctor knows you cannot dose thyroid without looking at where the blood work levels are. Yet he found this not to be important. Thank you Dr Westin Child’s for such a great article and it is very very true. I am taking the medication I requested but I’m not sure that I’m feeling that much better. My primary care physician only looks at TSH. He is not a good source for thyroid care. Funny thing is, my blood work is showing that I have no autoimmune any longer but my thyroglobulin is a 59, when it should be 0. We are both very concerned that my thyroid cancer has returned and may have metastasized at this point. I’m trying to find a doctor around here who is competent but that’s very difficult. I don’t want to go down this road again especially if my cancer has returned. I need someone who is very well-versed in this. Thank you all for listening and I hope that this helps others out there so they don’t end up in the same situation I am. I have great concerns of having reverse T3 issues that no one will test for or metabolic syndrome or any other number of issues that can come out of having a thyroid that is undertreated for so long. I am a obese for the first time in my life. I am 100 pounds heavier than I’ve ever been in my life. Even when pregnant, I did not weigh this much. The change in thyroid dosage does not seem to helping in taking any of the excess weight off. I think what angered me the most was that now I have to worry about diabetes, joint problems, heart problems, and all of the things that come along with obesity. I eat a very good diet. I love fresh fruits. I love a good salad. I never deserved this but this is my future at this point.
Everything mention, I have experienced first hand! I was diagnosed with hyperthyroidism and Graves, in 2015. Here it is 5 years later, 4 endocrinologist later, and none of the physicians at my family doctorโs office will do anything different. Every time I would see a new endocrinologist, one of the first things they mention is radioactive iodine or surgery. They rush me out the door instead of listening to anything I have to say. The Endocrinologist, Iโm seeing now, has told I can diet and exercise but itโs not going to help. Food doesnโt play a role. Your levels are in range, therefore your anxiety isnโt being caused from your thyroid. I havenโt gotten so bad in my mental state that Iโm causing them mental harm. Iโm either frustrated to the max, crying, or so exhausted that I sleep days away. This isnโt fair to my four children and fiancรฉ. Iโm currently in search of a more open-minded Dr that takes insurance, because I just cannot live much longer like this!
It makes me happy to see an educated physician coming out about the truth! Thank you for that!
Unfortunately that was exactly my experience with my Endo. I still see him to get my labs done. In the beginning he laughed every time I gave him a list of what I want tested. Mostly because I haven’t been able to get my hairloss under control. I’ve had to educate myself as well as advocate for myself. It’s been two years since my first visit. 1 and 1/2 years since my diagnosis of Hashimotos.
I’m on a low dose Armour (had to fight for that) after a year on Levothyroxine. My symptoms (other than hairloss) were all mostly helped by going gluten/dairy/egg/refined oils & sugar free. He thought that was just insane. I now see an integrative doctor but have my labs done through my insurance with the Endo.
Still looking for a solution to my intermittent hair loss. Iโve most likely lost 60% volume. If I go through another prolonged shedding period, I will no longer be able to hide it. Being a very young and active single 49 year old woman it’s just killing me. I know other people have it worse so I try to keep it in perspective. โน๏ธ
What if you had your thyroid removed? What tests should be ordered? What kind of numbers should a person have? I have been on levothyroxine since my thyroidectomy 4 1/2 years ago. Gradual weight gain. Finally lost about 15 pounds 2 years ago, dosage was dropped, gained the weight back. My primary has expressed willingness to treat my thyroid, so what should I ask her?
Hi Vicki,
You’d order the same lab tests whether your thyroid is present or removed.
My family doctor (who is no longer my doctor) sent me to an endocrinologist who was supposed to be “the best”. This endo, who looked to be less than 100 pounds, just blurted out, “you’re fat and you need to lose weight!” I am less than 50 pounds overweight but can’t seem to lose it. I have Hashimoto’s and was at the beginning of my diagnosis. I found your website and thought she would listen to me as her patient. I tried talking to her about various testing and even mentioned adrenal exhaustion and she just rolled her eyes. A young intern was shadowing her and she loudly told him that they would discuss me later. I was so appalled! Not only did she leave me waiting for an hour in a waiting room that I wasn’t supposed to be in but she talked loudly about me to her staff and the receptionist. I cancelled my future appointment with her and never went back. She is young and ignorant and is unfortunately leading others down her path of ignorance. I can’t seem to find anyone that I trust now. I am at a loss.
Hello, yes I experienced two years trying to get an internist to help me- went through 3 of them as they would not order the tests I asked for having done much reading about thyroid function and knowing this was more than hypothyroidism. I finally made appts with endocrinologist and separately with a functional medicine physician; of course waited another 4 months to get in.
Actually saw female nurse practitioner first in endoโs office. She was fantastic, ordered lab work to confirm her suspicion I had Hashinotoโs,
I had already started an AIP diet and was feeling better, but this put me on the road to recovery, added Cytomel to the Synthroid and it has made a difference.
I agree the endocrinologist himself did not seem too interested in exploring further other than to continue to check TSH q 6 monthsโฆ functional medicine also diagnosed me with SIBO and this MD takes the AI issues very seriously, so got even more help there, including suggestions to reduce stress/inflammation and more dietary recommendations.
I relate to the woman who wrote she wanted to give up. It is hard to keep going when all one feels terrible all the time and HAS to sleep all the time.
Being armed with research and information (much of it learned via Instagram posts and recommendations there) made the difference. One must be advocate for self which is not always possible. Good luck to all those out there looking for answers,
You are describing my experience almost exactly. After 10 years on levothyroxine (diagnosed at 50) I started going downhill, particularly noticing a serious decrease in brain function. I did my own research, asked my GP a few questions which immediately put her out of her depth and she referred me to local NHS endo. She made me go through many hoops before allowing me 10mcg liothyronine (T3). This had an immediate beneficial effect but this effect was not accepted – endo kept repeating that there was no scientific proof that T3 treatment had any effect, and if it was invented today it would never get a licence. I said I was very sorry for her, having to do a job that meant she could never actually listen to her patients, but only watch her computer screen (she had a student by her side while I said this). Eventually I found a wonderful private doctor in Integrated Medicine in Bristol, a specialist in bio-identical hormones just as you say. She increased my T3 dosage and has me on combination T4/T3 therapy (100/30mcg) and I feel much better generally and mentally. EXCEPT that I have a lung condition that has been slowly developing and worsening since I was first treated with levothyroxine. I have a permanent cough, with lots of congestion, which has resulted in blood blisters in my lungs, which occasionally burst. I am now finding there are times that I don’t have enough lung power to have a conversation. I do wonder if this lung damage could have something to do with the levothyroxine?
Hi Vivienne,
To my knowledge, I’m not aware of any connection between levothyroxine and lung-related issues.
Vivienne did you find the cause of your lung issues since I went on levo I have terrible issues with my lungs and many other issues as well skin throat joints weakness fatigue