A battle all the time: So after my dr appointment... - Thyroid UK

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A battle all the time

Clmartin80 profile image
7 Replies

So after my dr appointment the other week I asked for a drs phone call about my private test results

She too said that my results are normal and that there could be other factors why my TSH is high, like if I’m stressed or busy ect or because of my hormones at the time.

Apparently if your being treated or not they don’t treat or adjust medication till the TSH is over 10 and because the private test didn’t do the t4 she said that’s the result they go on.

She said if I had any scientific medical evidence that my TSH needs to be under 2 then she’d be happy to read it, but according to the British legal requirements my levels are fine just borderline.

Literally want to cry.

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Clmartin80 profile image
Clmartin80
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7 Replies
msmono profile image
msmono

Oh no - really feel for you around the wanting to cry. The main 'scientific' evidence I've found on here is by Dr Toft but others may know more. Here is the link to the page with lots of info: thyroiduk.org/tuk/diagnosis.... The Dr Toft part reads "You may not actually be on enough levothyroxine. Dr A Toft writes in the BMA book “Understanding Thyroid Disorders”, “The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.” He also states, “Although, by taking excessive thyroxine, a sense of well-being, increased energy and even weight loss may be achieved in the short term, there are long-term dangers to the heart and a possibility of increasing the rate of bone thinning and therefore encouraging the development of osteoporosis."

Have you previously posted your results on here? If not can you post them as anyone who could advise you on here will ask you to post them. hang on in there - you're not alone. So many of us have received this attitude from G.P.s

in reply tomsmono

The link doesn't work for some reason. Maybe this one does? thyroiduk.org/tuk/diagnosis...

greygoose profile image
greygoose

Just looked at your post with the results in:

healthunlocked.com/thyroidu...

Why did she say the private tests didn't test the T4? What does she think thyroxine is?

And, she is totally wrong about TSH needing to be over ten before adjusting dose. That is just insane. If that were the case, no-one would ever get an increase in dose. However, yours is almost ten, so to refuse you an increase, well… words fail me. Is she a sadist? Is she very, very ignorant? Is she vindictive or what? She's certainly an idiot if she thinks she can get away with it! In your shoes, I would be kicking up such a storm with her superiors she wouldn't know what hit her! She should not be treating hypo patients!

Clmartin80 profile image
Clmartin80 in reply togreygoose

She has reluctantly increased my meds but she was basically saying that it’s my life that’s getting me run down and kept saying about guidelines

greygoose profile image
greygoose in reply toClmartin80

She doesn't even know the guidelines - and probably doesn't know what 'guidelines' means. She's still allowed to use her discretion, and common sense should have told her you were under-medicated.

They always try to blame the patient. Don't put up with it! :)

SeasideSusie profile image
SeasideSusieRemembering

Clmartin80

because the private test didn’t do the t4 she said that’s the result they go on.

Your private test did do FT4, it was 13.5 (12-22).

As far as I'm aware the NHS doesn't test Total T4 so what's her problem?

Have another read of my reply to your last thread here:

healthunlocked.com/thyroidu...

where I quoted Dr Toft's article and also gave you a link and the information from Leeds Teaching Hospital - as this is an NHS hospital I think that should serve as something "official" and it says that TSH above 2 = likely under replacement.

According to the new NICE guidelines published in November 2019, they say the following:

nice.org.uk/guidance/ng145/...

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

How much more evidence does she need?

humanbean profile image
humanbean

You might find this thread of interest :

healthunlocked.com/thyroidu...

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