Endo said TSH 8.46 is fine : I saw my endo, after... - Thyroid UK

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Endo said TSH 8.46 is fine

richard123 profile image
15 Replies

I saw my endo, after stopping my thyroxine as she suggested and feeling very unwell she said yes proves you need it...

she said as t4 is mid range I should be symptom free despite Tsh being 9

She said my symptoms fatigue, dry eyes, brain fog, Anxiety, tachycardia, facial flushing probably is menopause so take HRT and stay on current dose of thyroxine

She said if that doesn't help she may investigate thyroid resistance....

I've done a year going around in circles...........

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15 Replies
SlowDragon profile image
SlowDragonAdministrator

TSH should be around one, or just under and FT4 should be towards TOP of range and FT3 at least half way in range

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Plus request the list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

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

If your endocrinologist thinks TSH of 9 is acceptable you need a new endocrinologist

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

TSH110 profile image
TSH110

Pity hers can’t be elevated to that level so she can experience just how “fine” it is. Slow Dragon days it all. Sorry you have landed with such an incompetent practitioner.

shaws profile image
shawsAdministrator

Richard, you'd have been better to consult a daily horoscope than consult with this person who knows absolutely nothing about hypothyroidism and symptoms.

To direct a patient to stop taking levo to see how the patient gets on is so ridiculous but not laughable as our body cannot function without replacement hormones at all and our heart and brain need the most.

She is one of these endocrinologists who have something missing in their training and who states a TSH of 9 is fine. Obviously we're in the UK where they've been told not to diagnose a patient until the TSH is 10. Maybe we should all emigrate to countries where the prescribe when it reaches 3.

I'd advise getting your own private test from one of our labs, and treating yourself to wellness. It can be done as most on this forum have done so.

So many have pinned all of their hopes on consulting with an Endocrinologist only to be sorely disappointed and not helped. Probably because Endos know nothing about symptoms and only to keep the TSH somewhere in range (UK up to 10).

Thyroid Hormone Resistance????? Everyone would have this if their dose is too low and TSH too high. Our T3 receptor cells are crying out for T3 but with insufficient T4 that cannot be achieved.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. We have a private lab which will do these home pin-prick tests. Blood draw should be at the earliest, fasting and don't take thyroid hormones until after test (24 hour gap).

thyroiduk.org.uk/tuk/about_...

We should have none when on optimum dose of whatever thyroid hormone suits us. Most on this forum who now self-medicate have recovered and have a life with no symptoms.

Medichecks and Blue Horizon are the labs.

thyroiduk.org.uk/tuk/testin...

richard123 profile image
richard123 in reply toshaws

The endo was adamant that TSH doesn't matter so long as T4 is within range TSH is irrelevant??? I've had T4 at top end but TSH was still high and without treatment t4 at 13.5 and Tsh 22 she said I should not have had any issues as t4 was still in normal range all be it at bottom end.....

She said I have a small window for treatment so am best on 75 with Tsh at 9 and t4 now 19. I cried she said try HRT

thyroidrose profile image
thyroidrose in reply torichard123

This doctor is a moron. Run screaming with your arms flailing to the hills to find a new one!

shaws profile image
shawsAdministrator in reply torichard123

The two most important I believe (being hypothyroid) is Free T4 and Free T3. Read on this link why these are important. I am absolutely positive members wont want their TSH to be 9:-

thyroiduk.org.uk/tuk/testin...

On the following link you will see by your TSH number that you are hypothyroid.

healthunlocked.com/thyroidu...

Before the blood tests were introduced we were all diagnosed and given a trial of NDT. If it relieved our symptoms we stayed on it and it was increased until symptoms were relieved. Symptoms were the 'king' of diagnosis not a TSH.

Some people are diagnosed with CFS or Fibro because their TSH hasn't risen sufficiently but will be given other prescriptions for these but maybe not something which will relieve these symptoms.

T3 is the only Active Thyroid Hormone. T4 is inactive and has to convert to T3. So why is she so concerned with the TSH. Maybe we should send her a copy of this:-

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply torichard123

In all likelihood a Diabetes specialist.....certainly knows nothing about how to treat thyroid patients

Bluedragon profile image
Bluedragon

Hi, I suggest you do your own research, lots and lots of it! You have a terrible consultant! Sack her and find a better one. Stop the Thyroid Madness are good books/websites to start with. Always get copies of your own blood work and learn what they mean - this forum is great.

Personally, I would avoid HRT (I’ve been there, done that), look at more natural ways to support any symptoms. Sage tea will help with memory and hot flushes- try adding pinch of rosemary too.

Have you had your B12, folate and ferritin tested too? Some of those symptoms could be a lack of one or more of these.

Jo

Student Naturopathic Herbalist

klr31 profile image
klr31

Most medics say ignore T4 and go on what TSH says!

Karen

silverfox7 profile image
silverfox7

I dread to think what your FT3 would be!

richard123 profile image
richard123 in reply tosilverfox7

4.1 when last tested Thank you

SlowDragon profile image
SlowDragonAdministrator in reply torichard123

Likely to have low vitamin levels too

Essential to test thyroid antibodies and FT3

Bluedragon profile image
Bluedragon in reply torichard123

Is that mid range? Lots of room for improvement there. 🤓

I would like to remove three quarters of your endo's thyroid and see if she felt OK. No, you won't feel OK with TSH 9 and I can't see how anyone would think that you would. Even if free T4 is mid range (and it might not be - doctors are often mathematically challenged), it doesn't mean that your free T3 - the important one- is even in range. It's so stupid saying you *should* be symptom free - did she stamp her foot and threaten to "cwy and cwy until she was sick" because you aren't? I think you need to find another endo or just go back to GP and get your old prescription reinstated. All your symptoms are hypothyroid. You might be menopausal, but that is a natural condition for older women, not a disease.

mouldylocks profile image
mouldylocks

Richard, I hope you can find the strength to carry on fighting for wellness. This condition seems to take the fight out of you, but the kind posters can buoy you up.

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