I am writing to this amazing community for further guidance and help- it has been my saviour on several occasions before. Thank you again!
My story is very long so apologies in advance, but suffice to say the biggest problems emerged 3.5 years ago when I was diagnosed with hypothyroidosm at 7 weeks pregnant and prescribed Levo. I subsequently miscarried but post miscarriage I was diagnosed with very low cortisone and Addison's Disease. I had 3-4 Short Synacthen tests (SSTs), some of which I failed. I did not wish to embark on taking cortisone and gradually my levels improved to what they call 'borderline'.. I have struggled a lot with low mood, bad hair loss, water retention ++ and a lot of fatigue- all of which got much worse after another miscarriage at 12 weeks about 15 months ago while I was on Naturethroid NDT. I was subsequently diagnosed with exogenous pancreatic insufficiency last year and now take pancreatic enzymes with meals. I have been gluten free for almost 10years, which definitely helps. No thyroid antibodies have been detected.
My question is that I only felt 'normal' when taking NDT (Naturethroid) with more energy. The problem is that I had to take larger and larger doses of NDT up to 5 grains to keep my FT3 above 3.5 (range 2.5-5.7 pmol/L). I found I felt best with energy, no hair loss etc when I had my FT3 at the upper third on range. The problem is that even on 5 grains, the FT3 started dropping again to 4 then 3.5 and then hypothyroid symptoms incl hair loss and fatigue etc ensued. My FT4 levels always remained low end of normal (never more than 13.8 on a range of 9-23) even with Levo. I have never understood why that is.
Iron levels, B12, Vitamin D etc are also within normal levels and I supplement regularly, even with Zinc and Selenium. I have MTHFT mutuation diagnosed after my most recent miscarriage and take methylfolate regularly. I have had gut issues and have undertaken a gut healing programme which has helped improve my absorption levels.
The main recent problems started 4 month ago when a new endo said I was taking too much NDT (5.5 grains) and dropped it by 50% in line with my weight. I began to feel very ill and then developed a severe depression and anxiety. The NDT was gradually increased to 2 grains and then T3 was added but I continued to feel unwell.
I was extensively investigated and found to have the D101 mutation which inhibits T4 to T3 conversion) but not DI02 which is apparently working. As my low mood and anxiety progressed, I saw 2 psychiatrists who tried various anti-depressant and anti-anxiety meds, but none helped. They then suggested T3 meds at 60mcg per day taken in 3 sets of 20.
After a lot of problems obtaining the T3 meds from abroad, I titrated to 60mcg which I take on waking. Clinically I still feel very tired with low energy. I am heat intolerant whereas I previously did not tolerate the cold. I feel low and anxious having been off work for 4 months and still struggling. On a positive note, my hair and even eye brows are growing back!!
I have been treated privately to date, but saw the NHS consultant on Fri to get the T3 prescribed (most of you will know of the nightmare scenario getting T3 prescribed on the NHS..). The consultant said he was was not happy to prescribe T3 as it is dangerous to the heart, causes atrial fibrillation and osteoporosis etc. He also said that havinga suppressed TSH when taking NDt is dangerous and confuses the brain. He suggested I stop all meds pending cardiac testing and further pituitary tests which are now planned for Sep! I literally burst into tears and now feel desperate!
4 months later I am nowhere further along in getting better. I cannot stop the T3 meds as I know I will beceome severely depressed again and have dropped to 40mcg again until I see my private endo this week for an opinion.
My most recent bloods after 24 hours of T3 showed:
TSH- 0.9
FT3- 2.7 (range 2.5-5.7 pmol/L)
FT4 - 7 (range 9-23)
9am cortisol: 300
My question is why is my FT3 so low even with 60mcg of T3 per day??
Should I return to taking NDT as before along with T3 meds?
Why does my FT4 barely go up with NDT (I understand it is normal for it to drop below range when one is exclusively on T3 meds).
Any advice very gratefully received! I am literally at my wits end!
Many thanks indeed for taking the time to read this very low post.
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Sangrom
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Do you mean that you left 24 hours between your last dose of T3 and the blood draw? If so, that's why it's low - a false low. You should only leave 8 - 12 hours.
Many thanks Greygoose- I had no idea. Will def alter timings for next test and see. It's just that I don't feel as great on T3 alone as I would have hoped. Still v v tired and lethargic and overall not great..
All I can say about the Endo's comments is that all he has stated is a figment of his imagination. They tell Tall Stories in order to get the patient to accept his nonsense.
I just wish more Endocrinologists would develop hypo, and then be given no thyroid hormones at all.
When pregnant do they not increase thyroid hormones instantly, to try to prevent miscarriages and also damage to baby?
The blood tests were invented along with levothyroxine. Therefore any blood tests we get if we're on any other thyroid hormones, i.e. T4/T3, T3 only or NDT cannot compare with T4 only. They will be different. It should be how we 'feel' on particular doses and relief of clinical symptoms which are more important. Increases can be a small amount every 2 weeks always taking note of pulse/temp too.
I did have Levo when I was pregnant, but they only gave it to me at 7 weeks for my first pregnancy which I fear was too late.. For my next pregnancy I was on NDT and do not believe I miscarried due to thyroid but rather due to a blood clotting disorder which was subsequently diagnosed and for which I was told I will requirew Heparin for future pregnancies. Thanks so much for your help and advice
Dear Sangrom l am probably unable to help but wanted you to know lm sending love & prayers to you as l know some of what you are going thru.l wont bore you with my story as the focus is on you.Stay strong, KNOW that you will get better, believe in yourself & demand answers calmly but with determination!.l shall follow your progress.Take care.Peems X
I subsequently miscarried but post miscarriage I was diagnosed with very low cortisone and Addison's Disease. I had 3-4 Short Synacthen tests (SSTs), some of which I failed. I did not wish to embark on taking cortisone and gradually my levels improved to what they call 'borderline'
I think this may have been a mistake. Low cortisol is one cause of hypothyroid patients struggling to ever feel well, being poor converters, and being unable to tolerate sufficient doses of thyroid hormones to make them feel well.
How are you treating your adrenal glands now? Do you take a good quality B Complex every day? Do you drink an adrenal cocktail every day? Have you optimised your vitamin B12, folate, vitamin D, iron and ferritin? It would probably be worth checking zinc and copper too. Being in range isn't the same as being optimal, so you would need to know results and reference ranges.
Some people take adaptogens, but I'm not sure which ones help raise cortisol and which ones lower it. Avoid Holy Basil because that definitely lowers cortisol. And be wary of anything which suggests that adaptogens "balance" cortisol. Personally, I don't believe that one adaptogen can lower cortisol in one patient and the same adaptogen can increase it in another patient. But I know I'm probably in a minority with this.
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I was subsequently diagnosed with exogenous pancreatic insufficiency last year and now take pancreatic enzymes with meals.
What was the exogenous cause of your pancreatic insufficiency, if you don't mind me asking?
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The main recent problems started 4 month ago when a new endo said I was taking too much NDT (5.5 grains) and dropped it by 50% in line with my weight. I began to feel very ill and then developed a severe depression and anxiety. The NDT was gradually increased to 2 grains and then T3 was added but I continued to feel unwell.
How can your dose of NDT (5.5 grains) be dropped by 50% then gradually increased to 2 grains? Sorry, but the arithmetic doesn't work.
Can I just say that this new endo could have killed you. One of the ways that the body keeps itself going when thyroid hormone levels are low is by raising cortisol. But your adrenal glands are already unhealthy, and you could run out of cortisol. Doing so would cause an Addisonian or Adrenal Crisis.
Can I just point out that if your adrenal and thyroid health are poor, and your pancreas is also unhealthy, that anxiety and depression would be practically inevitable. And the cure isn't anti-depressants or anti-anxiolytics. They will just add another stress to your already over-taxed body that will add addiction to your problems. And you might struggle to come off them too. Withdrawal from psychiatric drugs may cause immense stress and put your adrenals under immense stress in the process.
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The consultant said he was was not happy to prescribe T3 as it is dangerous to the heart, causes atrial fibrillation and osteoporosis etc. He also said that havinga suppressed TSH when taking NDt is dangerous and confuses the brain. He suggested I stop all meds pending cardiac testing and further pituitary tests which are now planned for Sep! I literally burst into tears and now feel desperate!
T3 (as a treatment) is only dangerous to the heart if you were overdosed. See this link (you can download the paper as a PDF if you want a copy) :
For further papers on the subject, google "low T3 and the heart".
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Can I suggest that in future you go to see doctors of any kind with a witness (who believes in you, understands what you are going through and how you are affected, and doesn't believe that doctors are God in disguise). It sounds to me as if you've been bullied and pushed around by a bunch of people who are ignorant about the thyroid.
Another thing to point out is that a doctor who suggests stopping all your meds is a deranged lunatic. And also, you have the right to refuse to do what he says.
He also said that havinga suppressed TSH when taking NDt is dangerous and confuses the brain.
I think the only brain that's confused here is his. Endos have a load of myths and legends and fairy tales that they use to fob off patients. If your Free T3 is in range then TSH is irrelevant, and this doesn't confuse anyone except endos.
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In your shoes my first step would be to get some treatment for the very low cortisol. I know you didn't want to take hydrocortisone, but if your body can't create sufficient cortisol for you then you will stay permanently in trouble with nothing working as it should. And replacing low hormones for life is not the same as taking drugs for life.
Thank you so very much humanbean for taking the time to write such a thorough and thoughtful response- I am truly so grateful.
I take Vit C daily, Vit D, B vits, Vitamin D, Folate as I have MTHFR , Iron and Zinc . Antidepressants were offered to me (so many I can't remember- and I felt awful with all of them!)
I felt the best on NDT but found that I had to keep increasing to get the same benefits and T3 increase was not sustained. Whether that was due to poor adrenal function or poor T3 cell receptors due to inflammation I am not sure. A recent 9am Cortisol result was 300 which the private endo said suggested adequate adrenal function, however the NHS Endo is not convinced and wants to check the pituatory axis and complete an insulin stress test.
But you are so right that being on anti-depressants and reducing the NDT suddenly by 50% messed me up completely and I have not fully recovered. The private endo told me to reduce the NDT from 5.5 grains to 2 grains which made me feel terrible! He then added 25mcg of T3 gradually in 5mcg increments but to be honest that did not make much difference either. Then he and 2 Psychiatrists recommended 60mcg of T3 in 3 daily 20mcg doses. However I take them all at once in the morning on an empty stomach- to be honest. I have a busy job and when I return to work, I will invariably forget doses during the day, then not to eat on either side etc etc
But being told to stop all meds again n ow is too much and I have decided to continue on the T3 for now, albeit at a reduced dose of 40mcg while my adrenal functio is investigated.
Perhaps I need NDT to be added in again. I would have expected to feel better by now on 60mcg of T3 instead I feel tired and lethargic and very hot (notwithstanding the weather) rather than energised. I mised my period but that then arrived 20 days late..
It has been such a tough road with so many conflicting opinions and I cannot believe that after years of being ill, there is still no light at the end of the tunnel.. This is the onl;y forum that gives me some strength and hope and that makes any sense. Thank you so much!! I will keep you posted on developments
The ones I've seen are typically a combination of orange juice (for the vitamin C), cream of tartar (for the potassium) and salt (preferably sea salt or Himalayan salt).
Sometimes the sources of vitamin C, potassium and sodium change, but the end result tends to aim for the same results - vitamin C + potassium + sodium.
I don't actually take an adrenal cocktail - my cortisol is high already without encouraging an even higher level.
I've never taken Maca myself, so I haven't researched it very much.
I would do that too if I took an adrenal cocktail. I can't much see the point of all the sugar in the OJ when a vitamin C supplement would be more precise in terms of dose and would have less sugar.
I have had the same problems as you.... 16 years ago.... your adrenal glands are under huge pressure when your thyroid isn’t working properly .... I had miscarriages and borderline Addison’s disease...... you must firstly TRY to stay calm ... stress is making things much worse for you.... can I recommend you go to see Barry Durrant Peatfield... he is based down south, he is in his 80’s now but he was the only person who helped me, & many others.. he is medically trained and trained in thyroid disease at the Broda Barnes institute in USA however he was forced out by the GMC as he was so vocal about poor thyroid treatment in the UK.... I, like you saw many Endos even so-called professors! And none were able to help, actually made things worse.... a lot of it is due to a huge lack of research, out of date TSH test, GP’s who really don’t have a clue and slow drug –
Dr Barry Durrant-Peatfield:
Crawley (Surrey) – Most Tuesdays – Thursdays:
(Tel: 01883 623 125)
This man is the authority on all things Thyroid, he is a fellow sufferer, and he is incredibly experienced
Thank you so much Pamster! This whole thing is so challenging and having seen circa 8 endos in 4 years- every one has a different opinion! Without forums such as these, people would be lost and continuing to lives compromised by ill health. Thank you again to you all!
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At my wits end
Experience going OFF thyroid meds?
Having to go off NDT after several years and back on levo only - how to explain it?
Blood test results in advance of endo appointment + what are the MHRA guidelines for NDT?
