Is this valid advice?: I was talking to a friend... - Thyroid UK

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Is this valid advice?

knitwitty profile image
9 Replies

I was talking to a friend earlier today, and she has been feeling under par for some months.

She takes 75mcg of levothyroxine and has been on this dose for a few years, I advised her to get a full thyroid panel from medichecks to get a better picture of what's going on.

Her latest blood tests from her doctor were:

TSH 4.88 ( 0.35- 5.0

T4 16.6 (11-23 )

Her doctor said that this result is fine and that she needs to remain on as low a dose as possible as if she has a higher dose of levo her own thyroid will pack up and not work any more, I should also add she has hashimoto's.

I suggested that her TSH was far too high for someone on levo and that an increase might help her to feel better. She has taken a full thyroid panel with medichecks so hopefully this will give her a better idea about what's going on, but with a doctor like that will she get any help in increasing her levo?

Is it just me or is this another doctor who knows diddly squat about hypothyroidism?

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knitwitty
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9 Replies
Lalatoot profile image
Lalatoot

You are correct.

SeasideSusie profile image
SeasideSusieRemembering

Totally in agreement with you Knitwitty.

Her TSH is far too high and FT4 too low for a treated hypo patient. She needs an increase in dose of Levo.

Her GP should know that her thyroid is not providing enough hormone so it needs to be replaced at a level appropriate enough to alleviate her symptoms.

But I don't know how she can persuade this ignorant doctor to increase her dose other than by using the article by Dr Toft which he wrote on Pulse magazine (the magazine for doctors) which says:

"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 that it can be FT3 rather than Total T3.

You can obtain a copy of the article from Dionne at ThyroidUK :

tukadmin@thyroiduk.org

Print it and the quote is from Question 6.

knitwitty profile image
knitwitty in reply to SeasideSusie

Thank you I think I have pulse article, I will pass a copy on to her , we went out recently and it was and evening of "compare your thyroid symptoms", it's very concerning that we have to do everything for ourselves rather than rely on GP's to help us.

Marz profile image
Marz in reply to knitwitty

Yesterday I met a very lovely girl who told me she had lost her house due to several failed IVF's after miscarriages ... I asked if she had a thyroid problem. Yes she replied . Sadly the connection had at no time been made by her GP. She quickly asked if we could possibly meet as this was at a till point ... She was my first thought on waking this morning and I will of course meet up with her.

knitwitty profile image
knitwitty in reply to Marz

That issue terribly sad, I fear that thyroid patients are being failed terribly at the moment, I don't know why these highly educated and presumably intelligent doctors don't ask more questions.

I hope you are able to help and support your new acquaintance.

:)

jimh111 profile image
jimh111

No, taking more levothryoxine will not cause the thyroid to pack up. It may reduce in size a little but is capable of restoring itself - if it is healthy. It's usually good to get the most out of a failing thyroid, if only for the T3 it provides but in her case it seems close to total failure anyway. It would seem reasonable to see how she does on a higher dose. Also, bear in mind the inverse log normal relationship between TSH and thyroid secretion. In simple English, it takes more hormone to reduce TSH when TSH is not very high.

knitwitty profile image
knitwitty in reply to jimh111

Thank you, I explained that with Hashimoto's your antibodies attack the thyroid, her TPOs were 893 (0-24) and I suggested that her thyroid may have been under attack for some time.

I also said that levothyroxine that is prescribed is only replacing a hormone that her body no longer produces and that it is not like a "drug" that you become dependent on. Her dose is still quite low so I'm sure there is much room for increases .

She should know more when her medichecks result comes back.

SilverAvocado profile image
SilverAvocado

I agree with your assesement. This is a high TSH, and her freeT4 is less than halfway thru the range when most people will need it to be near the top to feel well.

Unfortunately the question of how to manage a doctor is a more difficult one :( you've had some good advice about that. Another option if that doesn't work is to shop around doctors, maybe changing practice if that is possible, try everyone out and see if she can find one who knows more about thyroid. In general, its best to take someone else to the appointment, if you're able to maybe you could go. A friend of mine had good success by going in every week to complain she was still feeling unwell.

Then, on the back burner is the idea she could buy her own, self medicate, and then dodge GP blood tests.

knitwitty profile image
knitwitty in reply to SilverAvocado

Thank you, good advice, I will offer to accompany her if she would like me to go with her to her next appointment, I can be quite knowledgable when representing others and I can remember all sorts of things. I just turn into a clueless wreck when I have to stand up for myself!! LOL. :(

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