Finally some good news: I've been taking Cynomel... - Thyroid UK

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Finally some good news

joboise profile image
9 Replies

I've been taking Cynomel(Cytomel) T3 only for over two years now and my health has improved dramatically. But it has been a long difficult battle to get it in the first place and then to keep it.

Historically, like many people on here, my life wasn't worth living, it is easier to say that nothing worked than describe all the symptoms. I still think of them as my lost years.

After going on a strict diet and putting weight on I did the research and ordered T3 online. As my health improved I confessed to my GP and she agreed to prescribe it.

Last year she left suddenly and her replacement was both ignorant and arrogant. He altered my prescriptions for everything and I was completely destablilised for a while. Then I found a new DR, who is lovely but cautious, she insisted that I saw an endocrinologist if I wanted to keep the T3. My online research made depressing reading, TSH is the gold standard in France. Eventually I found one who did prescribe T3. To see him meant a long drive and an overnight stay. It was an expensive waste of money.

He was determined to find a problem and couldn't, his ensuing letter does state that he could find no evidence of any damage caused by my T3 habit, however this didn't stop him from listing all the terrible things that would befall me. During the appointment he actually said that if I had a stroke & ended up in a wheelchair "we will be able to give you whatever we want". He then changed my prescription, added T4 and drastically reduced my dosage. After 3 weeks I couldn't function and had gained 10 lbs. He also unnerved me and I kept worrying whether I was doing any damage because he was an expert after all.

My GP read his letter and insisted on sending me to see a cardiologist to find out exactly what damage I had done to my heart. I went to see her today and guess what? My heart is fine!! Really fine and she will be recommending that I carry on with the T3.

She asked me a lot about it and told me that a lot of her patients with horrible cardiac problems have hypothyroidism that is treated with T4, she said that they can't lose weight, have really high blood pressure and cholesterol and go on to develop more serious problems that are difficult to treat. By the end of my consultation, I had the impression that she was asking me about T3 because she was genuinely interested from a professional point of view.

So, my T3 supply is safe for the immediate future and I can relax. I have been really anxious about losing it.

I also take Vitamin D and B6, don't ever eat gluten, avoid sugar and generally eat healthily. As I have begun to feel better I have started walking and just moving more. My energy levels are a bit erratic still and my body temperature is still very low, so I think I could increase my dose a bit.

I am so relieved.

Just for reference, Cynomel/cytomel is made in France by Sanofi and costs about €3.50 per pack.

So, if you are still battling with Doctors, don't give up. My story is one of the many that adds up to a lot of evidence that the endos and other Drs are wrong.

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joboise profile image
joboise
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9 Replies
Hillwoman profile image
Hillwoman

Lovely to hear you're on the road to recovery, and thank goodness you found a sympathetic cardiologist. :)

shaws profile image
shawsAdministrator

I think there will be a lot of visitors to France this summer and not just for the weather.

The way doctors frighten patients into only taking levothyroxine is the result of Big Pharma's monetary rewards for prescribing levo only. I take T3 only and feel great. Levo made me very unwell.

Endocrinologists shouldn't frighten you into taking something that doesn't really make you better but I think many of them get monetary rewards from Big Pharma to push their inferior product. The make millions of euros/sterling because if we have problems, the symptoms are then treated with 'other' medications rather than a proper thyroid hormone.

You have been through the mill with your doctors and am glad you've now found a sympathetic one. Thank god there are some still considering their patients' well-being.

I hope you recover your health again.

helbell profile image
helbell

Wow..well done, and thank you for sharing

fortunata profile image
fortunata

Joboise, that is fantastic news!

I've had a similar battle for five years. I kept telling the Dr and endo that T4 was doing nothing for me. They said it was the gold standard treatment and they couldn't prescribe T3. So I got my own supply... And got my life back, despite their horrified protests. A couple of weeks ago I got the results of a saliva test I had done. It showed I have a genetic defect which means I have a reduced ability to convert T4 to T3! So, hopefully, I'll be able to get it on prescription instead of relying on Mexico.

I have had to fight so hard to get my life back but, boy, am I glad I did!

fortunata profile image
fortunata

Is it possible to get T3 in France without a prescription?

joboise profile image
joboise in reply tofortunata

I read online that it was, but even with a prescription I have struggled to obtain it. The forst Doctor who prescribed it for me was Romanian, when I went to the pharmacie they told me that it wasn't obtainable in France. I stood my ground but they did a "computer says no" thing and then got the head honcho to come and sort me out. He snorted and said you foreigners might have it but we don't. I never went there again. When I went on holiday I had to obtain special written permission to obtain enough to see me through several weeks away. Before T3 I could have had any amount of anti depressants, anti inflammatories, stuff containing codeine (I still have a drawer full of that, statins, etc etc, but for some reason T3 causes alarm bells to ring. I have heard that you can get it in Turkey, my sister is going there soon so I'm going to ask her to try. I am paranoid about running out of it. When I went into hospital for my emergency gall bladder removal (apparently that is hypo related) they looked at my prescription, said "we don't have T3" and were preapred to let me go without, luckily I had a secret stash. They were amazed at my quick recovery!

marmaris profile image
marmaris in reply tojoboise

I agree with you about all you have said, they dish out all the prescription drugs like you mention with terrible side effects, but put up a barrier where the T3 is concerned. Yes you can get T3 from Turkey very cheap, I got some before I went onto NDT. It is called Tiromel.

fortunata profile image
fortunata in reply tojoboise

I also worry like mad that I will run out! I try to buy a uear's worth at a time. It's a good thing we are so tenacious!

greygoose profile image
greygoose in reply tojoboise

joboise, the French are terrified of anything hormonal - they almost cross themselves if you ask for it! NDT is illegal in France, as is HGH. And you can have problems finding DHEA - one pharmacy even refused to supply it for me because they didn't want to be 'responsible for the conséquences'! lol And I couldnt find a pharmacy that had even heard of pregnenolone. Although I believe it is easier in Paris.

But I've never had much trouble getting T3 prescribed, and pharmacies have always been able to order it for me, even though they Don't keep it in stock.

Fortunata, it is not possible to get T3 in France without a prescription. You even have to have a prescription to get vit D3!

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