New, advice for daughter please : Hi, my daughter... - Thyroid UK

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New, advice for daughter please

Kolo69 profile image
8 Replies

Hi, my daughter was diagnosed hypothyroid in 2014 and I am worried about her dose being adjusted. She has had it reduced from 200mcg levothyroxine to 50mcg by her endocrinologist and her symptoms are tiredness, pins and needles, cold intolerance, depression, hair loss, weight gain, joint aches.

Advice appreciated.

Nov 2017

TSH 0.08 (0.2 - 4.2)

Free T4 20.3 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

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Kolo69 profile image
Kolo69
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Clutter profile image
Clutter

Kolo69,

If your daughter's endocrinologist understood the first thing about thyroid medication s/he would know that dose adjustments should be gradual, usually in 25mcg increments, not swingeing 150mcg cuts.

There was no reason to reduce dose based on those results. TSH was suppressed and that is probably what prompted the dose reduction but your daughter's FT4 and FT3 were within range so she wasn't overmedicated.

How long has she been on 50mcg?

Kolo69 profile image
Kolo69 in reply toClutter

She has been on 50mcg since last week. She does not accept the reduction and she does not accept the results since they were done 3 weeks earlier than her endocrinologist suggested.

Thanks

Clutter profile image
Clutter in reply toKolo69

Kolo69,

Did she ask endo why dose was to be reduced? If your daughter doesn't accept the reduction why has she reduced dose to 50mcg?

Kolo69 profile image
Kolo69 in reply toClutter

Yes the endo said her TSH was too low. She felt she had to listen to the endo

Clutter profile image
Clutter in reply toKolo69

Kolo69,

Whether the endo is right or wrong about TSH being too suppressed (and it is debatable) the endo is not right to make such a swingeing cut in dose. Dose should have been reduced to 175mcg and thyroid levels retested 6-8 weeks later.

I don't know how your daughter will get around this. If she has a supportive GP perhaps the GP could speak to the endo or better still another endo for a second opinion.

shaws profile image
shawsAdministrator

Doctors and endocrinologist seem to have the same type of training, i.e. adjust doses willy/nilly to try to keep the TSH 'in range' whereas their treatment is causing the patients extreme difficulties.

I don't think Endocrinologists and doctors are aware that if patient is hypothyroid that their gland doesn't produce sufficient, and they should prescribe sufficient to keep our TSH 1 or lower and concentrate more on the FT4 and FT3 and patient's clinical symptoms (of which they dont know ONE). Your daughter's FT3 could be a little higher.

SlowDragon profile image
SlowDragonAdministrator

Highly likely she has very low vitamins

Has she had vitamin D, folate, ferritin and B12 tested ever? Or especially recently

If so post her results

Does she have raised Thyroid antibodies? This is Hashimoto's

Yes her TSH is low, which endo doesn't like, but her FT4 is within range and her FT3 is LOW, showing she has poor conversion and not over treated.

This is common when vitamins are too low

See this recent research posted by Lyn Mynot (chairman of Thyroid UK)

healthunlocked.com/thyroidu...

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

If she did need to lower dose (which may not be true) the absolute maximum it should be reduced is 25mcgs. Never such vast dose changes. This underlines that her endo is not a thyroid specialist, probably a Diabetes endo

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

You need a new endo and fast

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

Did your daughter's Endo do any other tests , Adrenals for example?

Is he aware of these results and the low nutrients levels results?

Did he give any reason for this excessive reduction?

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