Struggling without NDT

[Mandcol]

Hi everyone, back again to you wonderful people for advice. After being treated for an overactive thyroid with carbimazole I became hypothyroid in 2016. I was put on thyroxine but felt really poorly and after getting nowhere with the NHS i went privately and was advised to take NDT . For 4 years I was very well but like many people on this site I can no longer get Thiroyd from Thailand which kept me well. I went to my gp in November for help and he referred me to endocrinology and after weeks of no medication I finally got a telephone consultation with an endocrinologist. I told him I previously felt very poorly on levo but he said that he thought I would do better on levo and t3. I have been on this for 3 weeks but become more and more poorly with exhaustion and chest pain the worst of my symptoms. After feeling I couldn’t cope anymore I rang and spoke to the endos secretary. She spoke to him and he said instead of taking the 100micrograms of levo and 20 micro grams of t3 to drop the levo and take 40 micro grams of t3. Is it possible to become well without T4? Sorry for such a long winded post but I am desperate to feel well.

[Hidden]

You should do better on Thyroid-S. I believe it is back on sale but don't know where. Others will help if necessary. I don't need any for next 2 years or so.

[Mandcol in reply to Hidden]

Thanks for your reply. I have had a PM from a member who has advised me where I can obtain Throid- S . I hope you are well, this is not an easy condition to deal with and often I feel alone as it’s difficult for family and friends to understand as I don’t appear any different, just slightly fatter !!

[Jazzw]

In answer to the question you actually asked—yes. Some people can’t tolerate levothyroxine at all but do very well on T3 only. It’s possible you would/will do better on T3 only. Would definitely be worth a go if you’re currently getting T3 on prescription?

[Mandcol in reply to Jazzw]

Many thanks for your reply. I know that the body if working properly converts T4 to t3 so I understand that for some people T4 alone makes them well. I couldn’t however work out how I could regain health on T3 alone. The endo has prescribed it though so I will try for a few weeks and see if I feel any better. Thank you for your reply and apologies if my post was a bit rambling!

[silverfox7 in reply to Mandcol]

T3 is the active hormone, that’s why T4 converts to T3 so that the T3 can be used by the body

[Mandcol in reply to silverfox7]

Many thanks for your reply x

[Bluemoonj]

I haven’t been able to get mine for a few months either. The place I normally ordered from raised their prices to high to afford. I keep watching hoping it will come down but it hasn’t yet.

[Mandcol in reply to Bluemoonj]

It’s just crazy that the NHS dont give us the meds to make us well. I hope you get sorted soon x

[Hookie01]

Different brands of Levo and T3 can make a huge difference. I can't take 2 brands of levo. Do you know what brand you were taking?

[Mandcol in reply to Hookie01]

It says Almus on the box but accordion the foil packet. I previously took teva and was poorly on that. Many thanks for your reply.

[Hookie01 in reply to Mandcol]

Teva and Accord are the ones I struggled with. I take mercury pharma now which I find a lot better.

[Mandcol in reply to Hookie01]

Did you get any chest pain? I can cope with the exhaustion and stomach issues but not the chest pain .

[Hookie01 in reply to Mandcol]

Accord caused me a lot of inflammation, I didn't actually realise this until I changed brands. I always had pain in my back, not so much chest but if I tried to sleep on my side or chest it would cause me pain. Once I changed brands it was like someone had let the air out of me and my joints weren't stiff anymore, i could bend and twist easier. My crp levels went down aswell.

[Mandcol in reply to Hookie01]

It’s weird how we all respond differently to different meds. Glad you got rid of your back pain. Stay well x

[pennyannie]

Hello Mandcol ;

There are a few treatment options that can be prescribed for hypothyroidism :

There are the synthetics , T3 tablets : T4 tablets : T3/T4 fixed combo tablets : and NDT :

Natural Desiccated thyroid is pig thyroid, dried and ground down into tablets referred to as grains with each grain containing trace elements of T1. T2. and calcitonin plus a measure of T3 at around 9 mcg plus a measure of T4 at around 38 mcg per grain.

In some countries all the above are routinely prescribed by doctors to help to restore patient well being and health. NDT was used successfully for over 100 years to treat hypothyroidism but considered by some " old fashioned " and not with a scientific pedigree that drug companies deem as the acceptable way forward.

I'm with Graves disease post RAI thyroid ablation in 2005 and was taking T4 only. I became very unwell some 8 years later, but found no help nor understanding through the NHS system. I then started researching myself, finding this amazing forum and the Elaine Moore Graves Disease Foundation website. I realised Graves is for life and isn't cured by RAI but possibly compounded and that there are more treatment options than just Levothyroxine.

I have self medicated and tried a synthetic T3/T4 combo where I adjusted both T3 and T4 hormones - it worked as you can fine tune both thyroid hormones but I couldn't maintain my product source and didn't have enough stock to finish my experiment :

I then trialled and self medicated NDT and I have chosen to stay on this form of thyroid hormone replacement as it feels softer on my body :

I now take 1 + 1/2 grains which works out as 13.50 T3 + 57 T4 and do wonder if I replaced my NDT with the synthetics would this be the appropriate dose ?

If you were happy on NDT - I'd suggest you ask stay on it - and maybe your endo will be supportive, as last time I looked, there were still some prescriptions for NDT being fulfilled through the NHS, which of course, should be open to all of us dealing with life without a thyroid.

[LAHs]

Hi Mandcol. I agree with Jazzw. Do not be afraid to try T3 only. While I feel perfectly OK on NDT (Armour) I have to acknowledge that I have never felt better than the ~three short months I was on T3 only (immediately after my thyroidectomy). The only reason I changed from T3-only was ignorance. After three months my endocrinologist said, "We can now change you over to the good stuff!" She meant Levothyroxine, that was ignorance on her part - it wasn't (good stuff). My ignorance was believing her with no background information. She set me on a two year journey into sickness. After two years I became really desperate so began to do my own research and finally pulled myself out of that pit. I searched for a doc who would prescribe T3 or at least some T3 and got one who prescribed NDT. And then I was OK. If you have a feeling that T3 is going to make you well, give it a try. Like everything else you will have to jiggle the dose but T3 only stays in your system about a day so if you feel super over active one day, drop the dose the next day. Be a bit careful the other way around - watch your pulse rate.

[Mandcol]

Thanks very much for your reply. Today is the first day I have had the t3 only and although I was worried about going straight from 20micrograms to 40 as per the endos instructions I actually feel better ok. For whatever reason levo just makes me feel so ill. It will be great if I feel good on t3 only and there is no more panicking about not being able to get my meds. That’s as long as the consultant treats me taking into account symptoms and not just going by blood tests. I am glad you finally found a doc who made you well, I know only too well how awful it is when you are hypothyroid. Thanks for your reassurance on the t3 only and I will keep an eye on my pulse rate.