What to do now?: My son has been on thyroxine for... - Thyroid UK

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What to do now?

bobbobing profile image
10 Replies

My son has been on thyroxine for over a year now and TSH down from around 5 to about 2 but no improvement in fatigue. We have checked all vitamins and supplemented. He is taking Teva 100 and 75mg on alternate days. He is trying fluoxetine now too. Should we try coming off thyroxine if not helping. He is 17.

TSH 1.98 (0.35-5.5)

Free T4 15.8 (10.5-21)

Vit B12 886 (211-911)

T3 5.4 (4.2-7.5)

Vit D 83.9

Testosterone normal

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bobbobing profile image
bobbobing
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10 Replies
Lalatoot profile image
Lalatoot

He needs an increase in his dose. As both ft4 and ft 3 are barely half way through the ranges.

The levothyroxine dose is not optimal for him which is why he still has symptoms.

SlowDragon profile image
SlowDragonAdministrator

TSH 1.98 (0.35-5.5)

Free T4 15.8 (10.5-21)

T3 5.4 (4.2-7.5)

Ft4 is only 50.48% through range

Ft3 only 36% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Clearly under medicated and in need of 25mcg dose increase in levothyroxine

Essential to also test folate and ferritin levels too

What vitamin supplements is he taking

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)."

(That’s Ft3 at 58% minimum through range)

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

SlowDragon profile image
SlowDragonAdministrator

Testosterone - what are ACTUAL results

Has he always been on Teva levothyroxine?

Or does this one suit him best?

Teva is lactose free

Is he lactose intolerant ?

If lactose intolerant it’s extremely common to need higher dose than guidelines on dose by weight

Ferritin was extremely low in previous posts

Essential to get all FOUR vitamins optimal

Have you had BOTH TPO and TG antibodies tested

In previous post only TPO had been tested

Will need to test privately. NHS won’t test TG antibodies unless TPO are positive

Similarly need ultrasound scan of thyroid

Private ultrasound £150

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

Many, many people need addition of small doses of T3 alongside levothyroxine

But first fine tuning levothyroxine dose and all four vitamins optimal is essential

Edenlupus profile image
Edenlupus

I think you should consider the possibility of him being deficient in one or both of zinc and magnesium.

humanbean profile image
humanbean

My son has been on thyroxine for over a year now and TSH down from around 5 to about 2 but no improvement in fatigue.

With a TSH of roughly 2 he is under-medicated. Most people with hypothyroidism feel best when their TSH is 1 or under (but we are all different). Your son needs to have his dose of Levo raised to 100mcg per day.

You might find this post helpful, and you can print out the source documents for the graph and the table in the picture:

healthunlocked.com/thyroidu...

He is taking Teva 100 and 75mg on alternate days.

Ignoring for the moment the fact that your son is under-medicated, anyone taking an alternating dose like your son is is likely to end up on Teva because it is the only brand in the UK that makes a 75mcg tablet. For more info on brands and tablets available see this really useful link from helvella :

dropbox.com/s/6h3h0qi4eqwi6...

Teva is an unpopular brand generally, although people who are lactose intolerant sometimes love it. Doctors like prescribing it and pharmacists like dispensing it because of that 75mcg tablet - it makes their life easier.

You can cut tablets to make up a specific dose, so perhaps you could work out how many 100mcg tablets you would need to satisfy your son's prescription if you cut tablets to make up the dose correctly. (But hopefully he will have his dose raised so this isn't necessary.) It would be worth trying other brands of pills and avoiding Teva, just as an experiment. Brands aren't (usually) inter-changeable in thyroid hormones. People have to find the ones that work best for them and so experimentation and record-keeping is essential.

To cut tablets you have two choices - either a pill cutter or a scalpel or hobby knife or craft knife. Opinions vary about which are better. Personally I use scalpels - something like this :

amazon.co.uk/Modelcraft-PKN...

Note that prescribed thyroid hormones don't add to the output of the patient's own thyroid (if they still have one) - they replace it.

Many doctors don't know what I've underlined above. They assume that someone who is only mildly hypothyroid will just require a small dose of thyroid hormones. But degree of hypothyroidism is not a good guide to the likely dose someone will eventually need.

He is trying fluoxetine now too.

I think you need to stop your son taking the fluoxetine (Prozac), but wean him off very slowly. I hope he hasn't been on it long. It is very seriously addictive, any SSRIs are difficult to withdraw from, and they have some awful side effects that in some cases the patient might never recover from, for example movement disorders and sexual dysfunction. SSRIs can also increase the risk of suicide, particularly in children and young adults.

Have you ever read the Patient Information Leaflet (PIL) for fluoxetine? If you haven't you really need to - and read it very carefully. The following link might not be the exact dose and brand your son is taking but the PILs for all doses and brands will be very similar :

medicines.org.uk/emc/produc...

Regarding the Prozac, some websites you might find interesting on the subject are :

rxisk.org/category/antidepr...

davidhealy.org/blog/

study329.org/

David Healy is a psychiatrist who writes about anti-depressants and Study 329 a lot.

en.wikipedia.org/wiki/David...

Should we try coming off thyroxine if not helping

Absolutely not. The main reason for your son's depression is most likely to be him being under-medicated for his hypothyroidism. Thyroid hormones aren't an optional extra - they are essential for life, and getting the dose right is essential for a good quality of life.

Have you had ferritin levels tested? (Ferritin is a measure of iron stores in the body.) Low iron is well known as a side effect of hypothyroidism, particularly when it is under-medicated.

A personal anecdote - when I fixed my own low ferritin and improved my iron levels substantially my life-long depression reduced enormously, and my anxiety disappeared altogether.

SlowDragon profile image
SlowDragonAdministrator in reply to humanbean

In previous posts he has had low ferritin

So likely ongoing issue

shaws profile image
shawsAdministrator

I would look at the side-effects of fluoxetine(Prozac). I am not medically qualified but I think a T4/T3 combination might improve his health.

rxlist.com/prozac-side-effe...

It would have been kinder to prescribe T3 instead, as that is what our body lacks especially brain and heart (and I'm not medically qualified).

I remember - a number of years ago - watching a TV programme from the USA and the large audience had been prescribed this who had bad side effects.

"Get emergency medical help if you have signs of an allergic reaction (hives, difficult breathing, swelling in your face or throat) or a severe skin reaction (fever, sore throat, burning eyes, skin pain, red or purple skin rash with blistering and peeling).

Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself.

nhs.uk/medicines/fluoxetine...

SlowDragon profile image
SlowDragonAdministrator

Is he being treated just by GP, or by an endocrinologist?

Recommend Email Dionne at Thyroid UK for list of recommended thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

Who suggested antidepressants - GP or endo?

Being under medicated causes depression

You likely need a pro T3 endocrinologist. See Thyroid U.K. list

Roughly where in the U.K. are you?

bobbobing profile image
bobbobing

Thanks everyone. We have followed all advice given and got antibodies done and scan. These didn't show any problems. He had TSH up - that was all. He has an endocrine doc but GP is not on side. Am thinkinh to change GP.

I wanted v much to avoid fluoxetine but after a year had to help him somehow and I think it has helped a bit with mood. Maybe he should try increasing the dose. Can weight loss happen if goes too high? Also some of his tablets now are Accord and others Teva. Does that matter?

Triciatextiles profile image
Triciatextiles

If you google Fluoxetine and Levothyroxine you will see that there is evidence of an interaction between the two resulting in the reduced serum levels of levothyroxine and increased TSH. I understand why you feel that this is helping, my daughter went though depression (not connected to her hypo) and she needed this for a short while, then she weaned off and her tiredness went.

Also Teva contains acacia powder which some people cannot tolerate (my daughter became severely ill for a week and the GP could not understand what was wrong with her until i realised that her brand had been changed and she cannot tolerate anything with acacia).

You may want to stick to Activis/accord brands.

Agree with previous comments - he is under medicated.

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