T3 problems

[Pipcon]

I have never posted before and have been taking both T4 (250 mcg) and T3 (27.5 mcg) for more than 15 years. My GP has been worried I was slightly over prescribed and several times I have tried to reduce T4, but always ended up tired and depressed and went back up to normal dose. Last month the chemist told me T3 was unavailable and I should see GP. The GP I saw (not my usual one), said I should stop taking T3 and have a blood test in 6 weeks. This didn't seem a good idea, but had no choice, although I did have some stock left. In the mean time I Googled T3 and found out about all the stuff that has been going on and was very worried. Within 3 weeks of stopping T3, I was completely incapacitated, with every hypothyroid symptom on the list, unable to work, or drive or walk even short distances. I brought the blood test forward and started taking my remaining stock afterwards thinking the blood test would prove I desperately needed this drug. I am just starting to feel better after 2 weeks. However, now I have seen the test results, they look OK: Serum free T4 level 22.7 pmol/L (unchanged)

Serum TSH level 0.03 mu/L

(unchanged) Serum free triiodothyronine level 5.3 pmol/L [3.5 - 6.7] down from 9.4

. Could anyone explain how I can feel so bad with these "on the face of it" good test results? The guidelines from BTA say that GPs should gradually reduce the drug, not just stop it and this could have contributed. Now I don't know what to do because I have no evidence I was so ill as I was relying on the blood test and it was impossible to get an appointment with my normal doctor until next week. I want to continue taking T3 and if anyone could pm me a reliable source I could buy online, I would be really grateful.

I have found this forum so useful, thanks!

[shaws]

Are you in the UK. If so they have put a blanket ban on the prescribing of T3 and many have had it withdrawn altogether.

The British Thyroid Association put out an article at the end of December 2016 stating that if patient was well and stable they should have T3 removed.

Give your GP a copy of the following.

british-thyroid-association...

Blood results are only that .....results. The most important thing is how the patient 'feels' on a particular dose and if well with relief of symptoms they are on an optimum dose.

I doubt the Endos or GPs are aware that some people are thyroid hormone resistant and in order to recover they need doses which would knock some people off their feet but they recover with high doses.

[Pipcon in reply to shaws]

Hi

Yes in the UK and thanks for link which is already printed to take to GP. I thought as I had been taking T3 for so many years I would qualify as an "exceptional case" but only if backed up by the blood test and that's why I am so worried. I don't understand why no one told me about the blanket ban or about the consultation document? I only found out 3 weeks ago. What is the point of a consultation if the people who it directly affects don't know about it? Couldn't someone have put a note in with my prescription?

My life has been turned upside down since this happened.

[greygoose in reply to Pipcon]

'I don't understand why no one told me about the blanket ban or about the consultation document?'

Because they're trying to pretend that they're doing it for the patient's good, and not because of the price. They're telling individual patients that T3 isn't right for them, and that there's no proof that it works, etc. etc. and point blank denying that it's a money issue.

[shaws in reply to Pipcon]

First the advice is to visit your Local MP and tell him your T3 has been withdrawn and it is a necessity for you to feel well. Also you could take a copy of the BTA document and highlight the part that states if we've been steady on a particular dose they shouldn'#t remove it or there could be consequences for us.

Your MP could also phone and speak to Lyn Mynott of TUK who has the campaign running.

Also please sign the T3 Campaign that TUK is running and it is in the Pinned Posts on the right-hand column. We have to be pro-active.

[Quokka in reply to Pipcon]

I don't know how T3 patients could have found out about the Consultation without this forum. I agree with you-the NHS could easily have contacted us though our GPs.

[Saggyuk]

It is quite a high dose to be honest and unusual to feel so bad with those test results especially where these were taken after being reduced. I used to be the same and was on T3 only and could only manage with T3 levels well over range at around 9 also. I believe it was to do with the level of inflammation I had and stomach issues I had meaning although it was in my blood, it didn't seem to be getting anywhere else it needed to go or used effectively and therefore resistant to it.

You should get the other tests recommended on here - Vit B12, Vit D, Ferritin and Folate as many of us are deficient in these and can cause issues with thyroid. You can post your results here for advice as docs often pants in this regards also.

I didn't manage to resolve these issues until I went 100% gluten free and required a large drop in my meds after and now seem to be able to process the thyroid hormones well and in range and can even convert a little. My vit levels also came in range for the first time also and many here find a gluten free diet help their symptoms improve so worth a try.

Hope you manage to get it resolved though