Health problems when stopping T3: Thank you for... - Thyroid UK

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Health problems when stopping T3

ys52 profile image
ys52
7 Replies

Thank you for all your help with my last post regarding having my T3 stopped after many years 😊

I decided to follow the Consultant's instructions and reduce the T3 dose by half, then when it run out to increase my T4 to 150mcg.

I started the increased of t4 last Wednesday and 2 days later had the worst sore throat I have ever had. I found it almost impossible to swallow! My glands were/are swollen and my neck in general is painful to touch.

Three days ago my tongue got REALLY sore, and progressively worse..... Went to the doctor yesterday and was told it's thrush..... Probably due to the reduced thyroid hormones?

I feel awful; cold and tired, achey and fed up but I will persevere with their instructions until I see them again, just so they can't say I haven't tried.

Has anyone else had thrush after stopping T3?

Thank you x

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ys52
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7 Replies
Aurealis profile image
Aurealis

It seems a bit reckless to continue without the T3 as you’re already poorly. The trouble with reducing thyroid hormones is that you then have less drive to fight. The longer you let this continue the more evidence there is that you can manage without, and the less you’ll be equipped to challenge

Why should you try without, you we’re well on it, why make yourself poorly. Your life’s worth more than this.

At least keep a diary and update your GP and endocrinologist every few days. Make it easier for them to represcribe it than continue withholding T3. Or ask for a second opinion from another endo immediately, or referral for all your other symptoms!

Take care, be well x

ys52 profile image
ys52 in reply toAurealis

Thank you 😊

Yes I have been keeping a diary and am going to have a blood test end of next week. Will also make arrangements to see the endo -who is very sympathetic to my case and has said he would gladly keep prescribing it for me but the NHS need proof I actually do need it...... Seems a bit of a ridiculous way to go about it after 12 years but there you go!

shaws profile image
shawsAdministrator

I am really sorry your T3 was stopped and you are suffering. I don't know where I'd be without T3 as levo is not for me. My body doesn't like it at all.

To find out if you are a good converter of T4, you need a Free T4 and Free T3 to be tested. This test will confirm or not whether both are at an optimal level. Doctors or endos don't appear to approve of these tests as their reliance is upon the TSH only.

Your tongue problem could be due to the withdrawal of T3 - thrush may be the doctor's guess for your sore mouth. The fact that you are very symptomatic I think would be due to the withdrawal of T3. It is all very well for the 'experts' to tell us that levothyroxine is fine and patient will feel good but not if we cannot convert T4 (levo) inactive hormone into T3 (Active hormone). That's why the frees are necessary. T3 is the only thyroid hormone that is required in our millions of T3 receptor cells and drives our whole metabolism.

We have two private labs which will do the frees for you and they are home pin-prick tests so make sure you are well hydrated a couple of days before the blood draw. Also draw blood at the earliest and fasting and a gap of 24 hours between your last dose of levo and the test and take afterwards. You can ask them how best to use the lancet.

This is a link and medichecks have a special offer.

We also have another lab and it is:

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

Ask GP to test B12, Vit D, iron, ferritin and folate. B12 deficiency can also affect the mouth.

Many who've had T3 withdrawn have sourced their own. If you wished to do this you'd have to put up another post requesting a private message to be sent to you with information of where to source T3. No information is permitted on the open forum but you will get private messages with information.

I am sure you will be able to tick off some symptoms:-

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

ys52 profile image
ys52 in reply toshaws

Thank you for this, I really appreciate it.

I posted a few weeks back and have quite a few messages from kind people regarding the best place to buy T3 so I will go down that route if I have to.

I had a blood test before they stopped the T3, I asked them to check the B12 and it came back OK.

I will definitely do your test, thank you so much 👍

shaws profile image
shawsAdministrator in reply toys52

OK doesn't mean optimum. We believe that B12 has to be nearer the upper part of the range but doctors think (somehow) that anywhere in the range is fine.

I will give you two links I have posted previously:-

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

SilverAvocado profile image
SilverAvocado

Ys52, Thrush (or candida overgrowth) is one of the things Dr Peatfield is very hot on, as he thinks most hypo people end up with it.

When I was undergoing RAI for cancer, where all the patients had had thyroidectomies and had no replacement, it seems like all sorts were overgrowing. I saw one woman with an enormous coldsore covering half her cheek, and I got athletes foot for the first time ever. I think these infections and fungus take advantage when our thyroid hormone is low :(

ys52 profile image
ys52 in reply toSilverAvocado

Ohh ok....how interesting, thank you for this - I'll add it to my notes for when I next see the consultant.

I have never had this before either so it must be connected!

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