I am new here and hope that sharing will be mutually helpful.

[Dhuloch]

I had papillary (sp?) thyroid cancer in 1997 treated by surgery and T4. In 2004 following an increased reading in thyroglobolin I had three days shut away following radioactive iodine treatment. Two years later I had surgery, radioactive treatment and a year on steroids to treat eye thyroid disease (ETD). Throughout all this I was living with Muliple Sclerosis. I have gone into this to show that my thyroid cancer and immune system are a bit on the unstable side. The important part in relation to my joining this group is about T3. For a long time I was just on T4 and the MS seemed to be progressing and I was in a wheelchair. Following some internet research and comments from a very experienced MS consultant I came across the information that T4 does not convert into T3 in the body (in the liver actually I think) in people who have long term chronic disease. I discussed it with a benign endocrinologist who suggested that I take T3 to see if it helped symptoms such as poor temperature control. To my surprise and delight I found that after a week I felt some sensation and power returning to my body and specifically my legs. I was able to manage walking again. Though limited (MS) it has remained stable enough for the last ten to fifteen years. I have been on a small background level of T4 (50mmg) and 40 mmg of T3. Now the medics are trying me on 20mmg of T3 and it is not enough but they are resistant to my increasing it to 40mmg again. Advice has changed - it is considered really bad now to suppress TSH (warning me about risks of heart problems, stroke, osteoporosis) so not feeling too good. Consultant is very resistant to my increasing dose though I have again to 30mmg. I get the impression that the establishment view dislikes prescribing T3 and would like to reduce or eliminate its use generally so I am feeling a bit jangly as things had been stable enough until now. Sometimes there isn’t a perfect solution but settling for the least bad in each individual is better than a blanket one solution for everyone. I hope my story can connect with others experience and hopefully help.

I am looking forward to connecting with others in this group.

Dhuloch

[jimh111]

Sorry to hear about all your health problems. In your situation you need support so if there is anyone who can go with you to your consultations I would recommend it.

It's true chronic illness can reduce T4 to T3 conversion. This can also be caused by periods of high hormone treatment which suppress the TSH and cause the pituitary to produce less TSH from then onwards. This is quite possible in your case as you had thyroid cancer and the TSH is usually suppressed for a year or two after in order to prevent the cancer coming back. So, it's quite possible your T4 to T3 conversion has been reduced, the actual reason is academic.

T4 to T3 does take place in the liver by 'type-1 deiodinase' (D1). A different form of T4 to T3 conversion 'type-2 deiodinase' (D2) that occurs in other organs affects how we feel. Again this is academic but as you mentioned the liver I though it worthwhile mentioning.

The real issue is that you do well on 40 mcg liothyronine with 50 mcg levothyroxine. This corresponds to about 170 mcg levothyroxine which is a little above average but not a massive dose. We would need to see results for fT3 and fT4 to know if your TSH is suppressed of whether it's just a case of having insufficient TSH being produced. Again it shouldn't really matter as your current 40 mcg dose is having a very big positive effect on your life. Getting the blood test results 'right' would harm you. It's true you might be at an increased risk of osteoporosis and atrial fibrillation in future but a lower dose where you could not walk would put you at much higher risk, quite apart from not having much of a life.

I'm not sure if you live in the UK. The UK NHS is trying to reduce prescribing of liothyronine to save money, ignoring the fact that the ill health this cost cutting causes will be much more expensive in the long run. If you are in the UK I strongly urge you to book an appointment with your MP and ask them for support, perhaps a letter explaining you circumstances. You need to visit an MP they get far too many letters to action them effectively. The personal touch also helps, most want to do good and feel good if they have helped someone they're met.