Hi everyone. I am new to this forum but I imagine like many people I am searching for some reassurance and some answers so any help would be very much appreciated. I will aim to keep my thyroid history as brief as possible.
I have been Hypothyroid since 1980. Although I had all the symptoms for at least 8 years prior to this but despite having a family history of thyroid disease and symptoms TSH tests were within normal range, finally I collapsed abroad and was asked how long I had had the tumour in my neck for (something I new nothing about)! I was then prescribed Levothyroxine but symptoms persisted. Approx. 4/5years ago I started taking Liothyronine this was certainly an improvement, Then a six months ago I managed to take a double dose by mistake. I went straight to the GP who said that my test results were so low that it had not made any difference as I had no symptoms. We agreed I could increase my Levothyroxine from 50mcg to 75mcg and continue with the 20mcg T3. My life was transformed I felt myself again, my husband could see the difference and I started to live again.
Recently my GP retired and my new GP said she had received a circular from the local CCG advising her not to prescribe T3 and she refered me to a local endocrinologist. He has said that I must come off T3 immediatley as there is a risk of stroke and osteoperosis. I asked if I would gain weight and he said yes probably a stone or stone and a half. I told him this would make me obese and at risk of heart attack and joint problems. The endo then said that he considered the risk of a stroke to be greater than the risk of heart attack. I was advised to come of the medication immediately and that he was unlikely to be able to bring me back to full health and I would probably have to live with a degree of ill health. I have tried but the symptoms are terrible. I had previously told my husband that I would rather live for 10 years as I am than 30 years as was before. Since then I have not been sleeping as I am so worried.
I am sorry to have taken so much of your time and I do appreciate your reading my post but finally my questions (test results below);
I have decided to try and get 2nd opinion and would like to remain on T3 please can anyone advise me if they think this is safe?
Also how can I source T3 for myself as in 2 weeks I will not have any tablets left?
Can anyone recommend a good endo who may be sympathetic to T3 please?
My recent GP test results (unfortunatley I do not have the lab ranges);
You really need the ranges to know where you stand. If your t3 and t4 are within range (and if I use the lab ranges my results come from they look ok) you should be fine. The risks of low tsh are contentious and you tend to hear about atrial fibrillation and osteoporosis, not stroke.
But again, you really need the lab ranges specific to your own tests to know.
If they're just fretting about tsh then you make a judgement call and if you're well on t3 (and unwell without it) many of us feel it is worth a small theoretical risk vs the certainty that we'd be unwell if we gave it up.
Well done for standing your ground. I do hate it when they seem to want to frighten you when all you're doing is trying to be well. Good luck!
Your endo is being rediculous. If T3 caused heart attacks and osteoporosis, the whole of humanity would be damned. We make T3 naturally in our bodies, and we would be dead without it! What does he think happens to that T4 you're taking? It gets converted to T3, that's what. Just taking T3 'ready made', does not put you at any more risk than converting it from T4. As long as your FT3 stays in range, there is no danger. But, as has been said, we really need the ranges for those results. The numbers on their own are meaningless. Plus, you should state what you were taking at the time of the test, because that makes a difference to interpreting the results.
If you watch last week's "Trust me I am a Dr" you will see Prof Toft (previous president of British Thyroid association) say that in coming years treating with combination of T4 AND T3 would become more widely accepted.
If you email Louise at Thyroid UK she can send you list of recommended endos
louise.warvill@thyroiduk.org.uk
If you read this forum, you will see your situation is sadly not uncommon. The recent rapid increase in cost of T3 is possibly underling cause.
I had previously told my husband that I would rather live for 10 years as I am than 30 years as was before.
That should be your choice. It should not be imposed on you by others, especially out of ignorance. Many patients get given a stark choice of this nature with respect to other illnesss and their treatment. They are allowed to choose their own course. So should you.
How can anyone, perhaps least of all an endocrinologist under a financial imperative and doesn't know you from Eve, evaluate and balance between the risk of stroke or osteoporosis against the certainty of a living hell with the likelhood of substantial weight gain? How can anyone know how much weight you would gain?
Further, sudden changes are potentially dangerous. Your body is NOT the same as a body that has been on levothyroxine-only - it has adjusted to the liothyronine. Our TUK adviser and independent researcher diogenes wrote about this within the past few days. If change is required (whatever the reason) it should be done very, very slowly.
[ Edited to add this link to the thread I was thinking about:
Thank you all for your reassurances. I will attempt to get the lab ranges but I have checked that they are within the normal ranges set by the British Thyroid Association. I have been following for sometime the posts on hear regarding the effectiveness of TSH tests and the cost of T3 and I am normally a reasonable sort of person but somehow feeling threatened as I do logic seems to disappear and changing with my meds has sent me to 'wonderland' again. It is great to hear some rational and logical arguments and I am feeling very reassured. Thanks again.
Those 'normal' ranges are for those who don't have a dysfunction of the thyroid gland, it is used for diagnosing. Once on hormone replacements we shouldn't be 'normal' but optimum which is a TSH of 1 or lower with Free T4 and Free T3 towards the top of the range, not bottom but they rarely test either.
Why do doctors lie!!! I should be dead and buried by now if your Endocrinologist's statement was true.
The fact is that statements like his is complete and utter nonsense. If we took doses of any thyroid hormone replacements which were too high we'd get worse symptoms and soon reduce our dose.
First, levothyroxine is also called T4. T4 is an inactive thyroid hormone and it's job is to convert to T3. T3 is the active thyroid hormone it is is T3 which is required in our billions of receptor cells. Once within the cells it work lasts between one to three days. We are more likely to develop other more serious illnesses such as heart etc with inadequate doses.
Quite a few of our members source their own T3 if it has been withdrawn or if they want to try and experience the effect on their body.
Sack your GP and get a new one! A referral to an endo is only as useful as the endo! Of course T3 does not cause atrial fibulation or osteoporosis you would have to have lots of symptoms pointing to that before you would get it. Ignore this ignorant doctor.
When it comes to osteoporosis, we have at least one person here on an unbelievably high dose of T3, her bone scan showed a distinct improvement. That is, if it is being alleged that you are or would suffer osteoporosis, measure and see what is or has happened.
Putting diesel fuel into a petrol engined car causes big problems. Putting diesel into a diesel engined car makes it run OK - and without it, it won't!
That is, if you need T3, you need T3. That same T3, in someone else, might cause all sorts of problems.
Thank you again so much for all the reassurances. I have decided to stay on the T3 until I can find a sympathetic endo who will help otherwise I will self medicate. I am already feeling much better mentally and physically from taking my regular dose of T3 and from all the support I have received from everyone who posted on this thread. I am in a much better place now and able to move forward. I have managed to obtain all my test results but I will put them into another post so that people do not have to read the whole of my thyroid history! Thank you again to everyone for all your help and advice.
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