2nd Endo appointment - help! - Thyroid UK

Hi,

I'm 27 years old and was diagnosed with hypo when I was 22. I went straight on to thyroxine at 25mg and over the last 5 years (still with all the same symptoms) have gone up to 75mg at the most with bloods always 'suggesting' I go back down. I seem to be stuck on 50mg now but last year managed to battle to get a referral to see an endocrinologist and had some hope that I may be treated with some understanding and knowledge of this complicating condition...

So, my first visit was as you can imagine, disappointing. The endocrinologist appeared fixated on the fact I might not have hypo as I'm experiencing the same symptoms and my bloods are 'fine'. I said that thyroid uk and many others will say that the basic blood tests are not representative but of course he knew best. (Although appears to be a specialist in diabetes over thyroid conditions). He requested I have just TSH and T4 tested (I assumed I would have a full spread) and then I was out the door, feeling rather upset and dismissed. That was 3 months ago and I'm due to go back next week.

I haven't picked up my latest bloods to tell you but just at a loss as to where I can take this. I don't want to see him next week but not sure what i can do. My partner is coming with me but I am unsure what to equip myself with to make progress. Does that sound like a normal first appointment with the NHS or should I have had more bloods? At the very least I thought I wouldn't have to explain, as I did with primary care, that not everyone improves on thyroxine. I've had a tired and mentally exhausting few months and feel like this appointment will be pointless after taking years to get in front of an Endo.

Sorry for the ramble, any help would be much appreciated.

Thanks,

2 Replies

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shawsAdministrator

2 years ago

Welcome to our forum and I'm sorry you have been badly treated since the age of 22. Now you have to learn that the guidelines the Endocrinologist go by are wrong. The TSH hasn't to be 'in range' - it has to be at the lower part of the range.

thyroid-info.com/articles/s...

Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft (who was President of the British Thyroid Association). Read and highlight question 6 (but ignore the following para which shows what most believe when dealing with us, mainly women, with thyroid disease.

Excerpt from Pulse article:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added."

Sack your Endo and read and learn as most of us have had to do on this forum. Thankfully I am now well and you will be if you know more than your Endo - which wont take much.

When they drop your dose of levo, it drops the T4 - in turn the low T4 is too low to convert to T3 (the active hormone required in all of our receptor cells - we cannot function without T3 and a Free T3 would tell you this. T4 is inactive.

When you've dropped your dose the TSH rises as it is flagging a dead horse because the patient doesn't have sufficient thyroid hormones to function as well as having clinical symptoms to boot.

Ask your GP to give you a full thyroid function test (he may not) but the ones he doesn't agree to Thyroiduk have recommended labs which you can have a private blood test. Ask for TSH, T4, T3, FT4, FT3, (sometimes labs don't do other than TSH/T4 if TSH is anywhere in range). You get a small discount as does Thyroiduk.org.uk.

Also ask GP to test Vitamin B12, Vit D, iron, ferritin and folate.

Always get the earliest possible blood test and fast (you can drink water). Leave about 24 hours between your last dose of levo and the test and take it afterwards.

hormonerestoration.com/Thyr...