TSH 4.6, but SO exhausted! What can I say to th... - Thyroid UK

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TSH 4.6, but SO exhausted! What can I say to the GP to get my lego increased (currently on 75mg)

sirlam
sirlam

So frustrating! Because the TSH is within the ‘normal range’, I am considered fine but I’m not! Is there a medically recognised source, that he will accept, that states a TSH of 1 or less is the target for treatment? Have searched but failed to find a suitable quote. Thank you so much!

18 Replies
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thyroiduk.org/tuk/diagnosis... read the part about hypothyroidism. Being in range is not enough for those who are hypo. You need a TSH <= 1 and some patients only feel well with a very low TSH. Your GP clearly has no clue in this area if he's planning on leaving you at 4.6; but the circumstances you describe are exactly my situation, listening to my GP's @sshat explaination... told to rejoice and go away because I was 'in range'. Tool. :)

sirlam
sirlam
in reply to Rapunzel

Thank you! It is nice to know I am not alone too.

Rapunzel
Rapunzel
in reply to sirlam

Trust me sirlam you are not alone. There are 93,235 of us and counting ;)

SeasideSusie
SeasideSusieAdministrator

Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, said in an article in Pulse magazine (the magazine for doctors):

"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)."

He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Also, print off this list of signs and symptoms of hypothyroidism, tick any that you are still experiencing, and show this to your doctor too and mention that if you were adequately treated then your symptoms would abate:

thyroiduk.org/tuk/about_the...

Also

pathology.leedsth.nhs.uk/pa...

and scroll down to

"Thyroxine Replacement Therapy in Primary Hypothyroidism"

and in the box you will see

TSH Level .......... This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

2.0 miu/L .......... Likely under Replacement

sirlam
sirlam
in reply to SeasideSusie

Thank you so much.

You might find this post of interest :

healthunlocked.com/thyroidu...

I've given the links to the original sources of information in that post.

sirlam
sirlam
in reply to humanbean

Thank you!

shaws
shawsAdministrator

Another doctor who needs a patient to put him on the correct path for diagnosing/treating hypo patients whilst educating him at the same time.

Your GP is clearly a n*b. Like mine. I was told I didn’t need any more Levo than 50mcg because my numbers were coming down and I was nearly in the normal ranges! Not even within them! I told him I still felt like sh*t. I was sitting there looking like a tramp as I hardly had the energy to brush my thinning hair, let alone iron my clothes.

So then I told him I wanted to see an endo. He said he didn’t refer to an NHS endo for hypo as I was clearly responding to the treatment. And that’s when I went private. I realise this is not an option for everyone and that makes me sad. He recommended what has turned out to be a brilliant private endo to me. This is the one helpful thing my GP has done for treating this s*dding disease. I think my GP thought the endo would merely reiterate what he was saying (that I was okay and must be mad), but he didn’t - he had been a lifesaver for me - he treats the symptoms not the blood test. Do you have Hashi’s? Good luck! 🤸🏿‍♀️#fightforyourthyroid

sirlam
sirlam
in reply to MissGrace

Yes - Hashi’s. This doctor seemed to be promising, talked about symptoms not ranges. I am still hopeful that he will listen! Can I ask - are you gluten-free?

MissGrace
MissGrace
in reply to sirlam

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4 only, you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well.

The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56!

Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case!

Good luck. #fightforyourthyroid 🤸🏿‍♀️

sirlam
sirlam
in reply to MissGrace

Thank you - that is so interesting! I was wondering why it seemed so complicated. I shall save this and get my head round it! Cheers.

The following papers from the Japanese shows that, in people with no working thyroid, "normal" healthy-type conditions on T4 therapy only occur if TSH is between 0.03-0.5.

Above this, hypo symptoms are still present. You are miles away from achieving normality.

Ito M, Miyauchi A, Hisakado M et al. Biochemical markers reflecting thyroid function in athyreotic patients on levothyroxine mono therapy. Thyroid 2017;27:484-490

Ito M, Miyauchi A, Morita S et al. TSH-suppressive doses of levothyroxine are required to achieve preoperative native serum triiodothyronine levels in patients who have undergone total thyroidectomy. Eur. J Endocrinol 2012;167:373-378

sirlam
sirlam
in reply to diogenes

Thank you so much.

So the links m'learned diogenes has given are

ncbi.nlm.nih.gov/pubmed/280...

and

ncbi.nlm.nih.gov/pubmed/227...

:)

sirlam
sirlam
in reply to Rapunzel

Thank you!

I’m a great believer in giving GP evidence before their eyes. Increase the dose yourself and then go to show GP how much better you feel. Take a list of the symptoms that have improved ... let the GP worry about research evidence ... good luck x

sirlam
sirlam
in reply to prussianblue

I had thought of that! Shall do so. Thank you X

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