High TSH at 17.66 with extremely low T4/T3 - Thyroid UK

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High TSH at 17.66 with extremely low T4/T3

Jodijmo profile image
10 Replies

Hi everyone. I'm new here. Please help....I feel awful!!! Thyroidectomy in 2013 and Celiac Disease. Doctors continue lowering my dose from 100 to 88 and most recently to 75 for 6 months. New Dr. put me on Compounded Slow Release T4/T3 (1grain).

Now TSH 17.66

T4 .06

T3 2.3

RT3 6

Previous lab results last month

TSH 1.33

T4 1.2

T3 2.8

RT3 16

Now he wants me back on Levothyroxine 75 since we know that worked and added 15mcg Slow Release Compounded T3.

Does anyone know how long SRT3 stays in your body?

Is that normal for numbers to change so drastically?

How long for numbers to get back down into normal range?

Thank you so much for any advise in advance!!!!!

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Jodijmo
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Can you please add ranges (figures in brackets after each result)

As someone who is coeliac as well, as on levothyroxine (and currently extremely under medicated) you are likely to have EXTREMELY low vitamin levels, unless supplementing

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Can’t really comment on thyroid results without ranges

Do you always get all thyroid testing done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Jodijmo profile image
Jodijmo in reply toSlowDragon

Thank you Slow Dragon!

Had some other blood work done and Vit D was low at 37, Now taking 5000 daily. The only supplements I take are Calcium/Mag/Zinc and sometimes Vit C. Before being diagnosed with CD in 2013 I always took a multivitamin and felt fantastic, but now I can't seem to tolerate much of anything! Ugh!!!

I'm 52 and Post Menopausal and estrogen, progesterone, testosterone and cortisol all low. I think it's ALL because of my low thyroid hormones. Right??? And if I get that balanced out, everything else will too.

I always get labs done late in the day atleast 8 hours after morning medicine.

TSH 17.66 (.40-4.50)

T4 .6 (.8-1.8)

T3 2.3 (2.3-4.2)

RT3. 6 (8-25)

SlowDragon profile image
SlowDragonAdministrator in reply toJodijmo

Yes vitamins are low because thyroid levels are not adequate

But it’s frequently ESSENTIAL to maintain optimal vitamin levels in order to tolerate and process thyroid hormones

You need to test folate, B12, iron and ferritin

Magnesium supplements should be minimum 4 hours away from levothyroxine

Have you tested calcium?

As Vitamin D levels improve calcium will naturally increase. That’s why it’s important to supplement vitamin K2

jrbarnes profile image
jrbarnes

Hello, 1 grain is not equivalent to the amount of Levothyroxine that you were previously taking, which explains the drastic change. I like this article on T3 and slow release T3 by Dr Westin Childs. You can copy and paste into your browser window.

restartmed.com/sustained-re...

helvella profile image
helvellaAdministrator

Slow or Sustained release T3 can be made with several different substances added to slow the release down. Each substance will have its own profile of release. The precise methods used by the compounding pharmacy can affect speed of release. Products produced by compounding pharmacies are often less well studied and may be less consistent. Further, as always, we are all different. The way the product transits in your gut might be different to others. And evenness of release is a real problem.

Therefore, it is next to impossible to predict how you will react to the specific SR T3 that you are getting. Might be similar to others - or significantly different.

shaws profile image
shawsAdministrator

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shaws profile image
shawsAdministrator

It is absolutely awful that, having your thyroid gland removed 7 years ago that you are still struggling!!!!!!

Do you consult with an Endocrinologist? Especially as you've had a thyroidectomy I would have thought that would be the best person to assist the patient who has no thyroid gland!

I also think it time you changed your doctors as yours does not seem to have any idea about how to treat a patient who is hypothyroid.

Whoever is advising/treating you needs updating on 'how to relieve a patients' clinical symptoms'.

I would look elsewhere as yours seem incompetent to deal with a patient who has no thyroid gland at all and who is dependent upon good and helpful advice of others. I think it is shocking that you are still very unwell.

I had my thyroid gland but was very symptomatic and it was an absolutely horrible introduction into the 'dysfunctional thyroid gland world' never mind having the thyroid gland removed altogether.

At the very least you need a combination of T4/T3 in a dose that relieves all of your miserable symptoms. If you're in the UK - due to the expense of T3 few doctors will prescribe but I believe that those people who have had their thyroid gland removed need knowledgeable doctors/endocrinologists.

Ask to be referred to an Endocrinologist and hopefully that person will be sympathetic and an expert.

You've been suffering too long.

If you are having a problem arranging tests, you can get a private one from one of the recommended labs and this is the method to get the best results:-

thyroiduk.org/getting-a-dia...

Make the earliest possible appointment - even if made weeks ahead.

It is always a fasting test (you can drink water) and don't take thyroid hormones until after the blood test. Request the following.

TSH, T4, T3, Free T3, Free T4 and thyroid antibodies.

If you don't want to ask your GP (he may not do all) - you can get "a do it yourself' blood test. If you do make sure your hands /arms are warm and that you are well-hydrated a couple of days before.

Always get a print-out of your results, with the ranges. Labs differ and so do the ranges so it makes it easier for members to respond if ranges are also stated.

thyroiduk.org/getting-a-dia...

The aim is a TSH of 1 or lower. A Free T3 and Free T4 towards the upper part of the ranges.

SlowDragon profile image
SlowDragonAdministrator

Slow release levothyroxine/T3 seems to be highly dubious

Yet to hear reports of anyone doing well on it

You are likely to need levothyroxine plus 2 or 3 small doses split through the day of T3 prescribed alongside

Jodijmo profile image
Jodijmo

Thank you everyone for all the advice. I truly appreciate it.Be Blessed!!!

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