Documentation/ Studies to show GP!

[TheCatsWhiskers]

Hi,

2.5 months ago, my daily medication was changed on the back of these test results:

TSH 0.09 (ref 0.35 - 5.50)

Free T4 14.8 (ref 9.0 - 22.7)

Free T3 5.8 (ref 3.5 - 6.5)

I used to take daily: 75mcg T4 Levothyroxine & 10mcg T3 Liothyronine.

I dropped to 62.5mcg Levo & 10mcg Liothyronine on the instruction of my GP, and am now feeling much worse.

On the back of this I had another blood test done last week and the results were:

TSH: 0.23 ref: (0.35 - 5.50)

T4: 12.4. (ref: 9.0 - 22.7)

My GP has already rung to say he wants to see me as I'm taking too much levo as my results are too high!!! Lab flagged it as 'slightly raised'. He obviously is purely going off the TSH.

I see him on Monday and want to strenuously argue my case, as I would like my dose increased back up to 75mcg Levo if possible, and certainly not have it decreased even further.

What I need to take with me though is official/ mainstream studies & well respected papers that illustrate that the TSH level isn't the be all & end all! Also, any that would show that with t3 supplementation, the TSH does often show as artificially low. I looked on the BTA site, and all their treatment guidelines etc seemed to support my GP's view?!

If anyone can point me in the right direction of any articles I can print out, I'd be really grateful!

Also, anyone got any opinions of why my TSH would be so low when me T4 & T3 are low-mid range? I supplement with good quality and doses of methylfolate, B12, D3, iron etc.

Kind regards & thanks,

[helvella]

I simply don't understand what your doctor thinks the FT4 and FT3 numbers mean. They certainly don't seem to mean the same to him as most of the rest of the (right-thinking) universe!

Get the FT4 and FT3 numbers sensible (which could mean a very low FT4 if on T3-only treatment) and see what happens to TSH! Not the other way around.

2. Good doctors work in partnership with patients and respect their rights to privacy and dignity. They treat each patient as an individual. They do their best to make sure all patients receive good care and treatment that will support them to live as well as possible, whatever their illness or disability.

gmc-uk.org/guidance/good_me...

The above ABSOLUTELY DOES NOT mean that a doctor should be instructing you to do anything. Partnership implies discussing, explaining, maybe even persuading.

Rod

[greygoose in reply to helvella]

Amen to that!!!

[TheCatsWhiskers]

Is there any studies though that indicate the TSH level is fine to be just under range, if the T4 & t3 are within range ... If I could print something like that off, it'll convince him more (I hope!).

[marram in reply to TheCatsWhiskers]

Yes - Dr Toft's book 'Understanding Thyroid Disorders states very clearly on page 88 that

'In some patients as sense of wellbeing is achieved only when FT4 or TT$ is raised, for example 30pmol/l and TSH is low or undetectable. In this circumstance it is essential that the T3 level in the blood is unequivocally normal in order to avoid hypothyroidism.'

So there you have it. Dr Toft also spoke recently on Scottish TV about improvement being needed in thyroid treatment.

This book is available on Amazon fairly cheaply, less than £5.

[marram in reply to marram]

FT4 or TT4

[Libby77]

Hi The cats Whiskers,

Am afraid I dont have any medical studies for you but I do have some personal experience.

After years of being unwell, I had my medication upped and downed countless times, it was only when my TSH was 0.18 that I feel well again. My endocrinologist saw this result and said he is happy for me to stay at this dose as I feel so well, when I said to him phew I was worried you would think it was a bit low, he replied no its fine.

So that is an Endocrinologists opinion, encourage your G.P to treat your symptoms and not be a slave to the TSH test.

Good Luck

Libby

xoxox

[TheCatsWhiskers in reply to Libby77]

Thank you Libby - it's really helps to hear personal stories as you don't know what to think on it sometimes, and start doubting yourself and your instincts!

[summer01]

Hi, my results were similar to yours and I shared dr Toft's book with the doctor that states that many people only feel well when tsh is suppressed and t3 and t4 are in the upper quarter of the range. I had to pay to have t3 tested privately but he did agreed to increase my dose on a trial basis. My tsh was just below the reference range. Good luck.

[TheCatsWhiskers in reply to summer01]

Thank you, it's great to hear personal experiences. I have ordered Dr Toft's book!