Thyroid UK
82,821 members97,845 posts

Still very unwell

Hi everyone

Not been around for a while, l am very unwell at the moment.

I have tried many combinations of various things but still l am very ill.

I had a fallout with my doctor, over taking T3 and doing some blood tests to see why l was feeling so lousy. So l managed to register with the doctor who diagnosed me with my thyroid problem 20 years ago. I was over the moon l had managed to track her down, and to her credit, she has tested me for everything possible with no anomalies in my blood tests. The only 2 things were... l was showing a marker for irritation which has shown in blood tests before, and my T3 levels which she was very concerned about. So much so she sent me to an endo. He wanted me off the T3, saying it wasn't a drug which most specialists prescribed, because of the risk of heart and bone problems. I said l had been on it for over 15 years with no adverse effects, having been put on it by Dr Skinner. Not a fan of Dr Skinner. So at his suggestion, to try to wake up the TSH, l have weaned myself off T3 for the last 3 months. Now that l have none in my system l feel like l am dying! Awful fatigue, lump in throat, indigestion, IBS, constant headache, bones and muscles aching badly, name it l have it.

I have blood tests on Monday at my doctors, they will be sent to the hospital, so l have the results when l see the endo the week after.

I am hoping l am not on the merry-go-round again of being back where l started all those years ago.

I don'the have up to date bloods for a couple of weeks, my previous results are here somewhere, l have no energy to find them.

I am taking 150 mcg Thyroxine and was taking 40 mcg of Levothyronine.

I feel so I'll, l can't see an end to it. I have a feeling l have made a big mistake coming off the T3 completely. I am trying everything, l am just so desperate to feel well.

Any input would be great. I appreciate the help l have had from you all in the past.

Sophie xxx

5 Replies

Your Endocrinolgist would have no idea if you were resistant to thyroid hormones, which you may have been if you couldn't convert levothyroxine to the Active hormone T3. T3 is the only Active hormone so your Endo should do a Free T3 blood test as well as a FT4. I shall give you a link and look down list to FT3 and FT4 and see why should should have them.

I really do not know why Endocrinologists try to frighten patients against T3 or NDT and state lies in order to bring patient into line. Look what's happened to you as an example, you now feel dreadful. They are trying to push patients off T3 due to the cost as it has risen to about £300 per month but that's not the patients' fault. If we do feel better with T3 only, it should be prescribed to those who cannot get well on levo.

I cannot find a post a few days ago which gave information about if T3 was withdrawn and it was needed by a patient, to discuss with GPs so it wouldn't be withdrawn.

1 like

Thanks Shaws...l told him l was prescribed it because l had a conversion problem, but he didn't seem interested. I have plenty of T3, not sure how long it stays viable for though. I really don't want to fall out with my new doctor, she is really good apart from disagreeing with my taking T3! Thanks so much xx


I hope someone does respond who is taking levothyroxine and who cannot convert it to T3. They just don't care and are blindly following suggestions. The link I read the other day says that if we have a clinical need it should not be removed.


i think you meant 40mcg of liothyronine /t3 and yes i think you have made a huge mistake coming off t3

however you might do much better on NDT

ignore all the twat about heart and bone problems on t3 ...its nonsense


Thanks.. l appreciate your reply. I am so desperate to feel well l will try anything. Now l feel twice as horrendous. I wouldn't know where to start with NDT or where to get it. What about blood tests? I know my new doctor is dead against it, but she is so fantastic in other ways. I am so weary of trying to get well l just don'the have energy for confrontation. I am so desperate and so called specialists seem useless.

Thank you for your help xxx


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