Disappointing but predictable outcome of Endo a... - Thyroid UK

Thyroid UK

141,246 members166,490 posts

Disappointing but predictable outcome of Endo appointments

Hele1 profile image
4 Replies

My GP agreed over two years ago that I need T3 due to all my blood results showing high/over range T4 but low/under range T3.

Unfortunately he couldn’t prescribe as he needed it confirmed by an endocrinologist first.

Now after many appointments and 3 different endos my latest was open minded but just written saying stop taking ndt immediately as it’s dangerous. 🙄 Not only that but stop all thyroid meds as my TSH is suppressed, wait until it come up into range and restart Levo at 25mcg if required.

Talk about going round in circles it’s so frustrating!

I am now resigned to continue self medicating. I tried ndt and felt so much better and t3 showed mid range. However my latest batch made me feel ill again and blood test shows under range T3.

I am now wanting to try T3 to add to my Levo but have read that it’s becoming more difficult to obtain?

Could someone pm me with a reliable source please. Thank you.

Written by
Hele1 profile image
Hele1
To view profiles and participate in discussions please or .
Read more about...
4 Replies
shaws profile image
shawsAdministrator

I would put up a new post asking where to source T3 and requesting a private message to be sent to you.

I know how disappointing it is when those who are supposed to be knowledgeable don't tell the truth. Considering NDT has been in use, safely, since 1892 it has been shown to be indispensible since then as before 1892 people died.

I wish they would stop telling patients lies.

The following link is self-explanatory and despite three yearly reminders before his death, they never did respond.

google.com/search?q=Rebutta...

Your new post will be closed for comments on the forum but you will be sent private messages from those who have information.

Hele1 profile image
Hele1 in reply toshaws

Ok thanks Shaws.

humanbean profile image
humanbean

Not only that but stop all thyroid meds as my TSH is suppressed, wait until it come up into range and restart Levo at 25mcg if required.

If you had a Free T3 test that was over the range or very high in range and you had hyperthyroid symptoms then I would agree you might need to (or want to) come off thyroid meds for a few days or a week or two until you lost the hyperthyroid symptoms, but then you would need to restart at a slightly lower dose.

But making you come off your thyroid meds until your TSH is high again, then restarting back at the beginning with 25mcg Levo is pure insanity and outright sadism.

TSH doesn't have any direct effect that I'm aware of on bones and hearts. It is the Free T3 level that is important.

Another point to bear in mind is that if you have positive thyroid antibodies i.e. you have autoimmune hypothyroidism aka Hashimoto's Thyroiditis, then this will make your thyroid function test results fluctuate, sometimes quite dramatically. In other words you might have high levels of Free T3 caused by the Hashi's, lower your dose one day, and then the next day your Free T3 might drop like a stone anyway, and you will feel very hypothyroid again.

Hele1 profile image
Hele1

I know humanbean. It’s a travesty that so few so called experts know anything about how to treat this condition.

Not what you're looking for?

You may also like...

BIT CONFUSED AND WHAT TO DO?

Hi. Looking for some advice. I am post thyroidectomy now 7 months. I am on 105mgs of NDT. I have...
NIKEGIRL profile image

Wading through custard - latest blood results, please help

I've been treated for an under-active thyroid since 2008 and like loads of you, it slowly dawned on...
Annie8ell4 profile image

Stumped by blood results & change to NHS FT3 range change - suggestions would be most welcome

After spending the best part of almost two years on NDT and getting more and more ill I decided 4...
BreifneKing profile image

headaches when moving from NDT to t3 and Levo.

I’ve been on NDT which hasn’t been working anymore as my t4 too low but when I increase my t3 goes...

I'm a little shell shocked after GP visit...you'll never guess what happened

So today I saw my GP with my latest private blood results and told him I was treating myself with...

Moderation team

See all
PurpleNails profile image
PurpleNailsAdministrator
Jaydee1507 profile image
Jaydee1507Administrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.