I have just got more and more poorly. Complete exhaustion, breathlessness, pains - particularly lets and hips, anxiety, depression, fog, lack of focus, lost all get up and go. Nothing seems to work for me and so I went back to the Endo as the start of September. I explained to her that I was in constant pain and hardly able to drag myself about at all. She looked at my blood tests which were
TSH 0,014 (0,360 - 3,740)
T4 Free 9,88 (7,60 - 14,60)
T3 Free 3,27 (2.18 - 3,98)
I guess on the face of it these look OK - do they! I was at that time taking a combined tablet 100 T4 and 20 T3.
The endo said I had to immediately stop taking this medication and changed me to liquid T4 L-Thyroxine - 25 drops (that took some doing - counting at 5 in the morning). I am not sure what sort of dose that is in relation to the tablets. Once upon a time I would get all this information but I am clearly a shadow of my former organised self.
For two days I felt a bit better and then it just got worse and worse to the point that I could not take another day and so before I got to the date she wanted me to take another blood test and go back and see her - I had to go back to the combined tablet. I felt a little improved but believe me - not good at all.
I know that if I go back to the doctor and ask for T3 they will say it is not what I need - I am just depressed etc. So I thought I would find out first if it did help before having that battle. So I have ordered T3, produced by Uni Pharma, 150 tablets/ each of 25 mcg.
I am not sure how to take this and how much to have.
Should I take it on its own or combine it with the combined T4/T3 tablet that I have aat the moment or even the T4 liquid (I still have a supply).
Is it OK for me to only have T3 and how quickly should I make a judgement on whether it is improving things? I seem to recall that it's results show more quickly than T4.
I sort of feel like this is my last chance to get my life back so I want to give it a proper chance.
Any help would be so much appreciated.
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France1
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I should add that I do also get very breathless and my heart rate increases very quickly. The doctor thinks possibly Fibro and maybe maybe ME - but it could just be depression.
I am depressed but I think it is just because of the pain and tiredness.
I hope you got good advice on reputable site. Loads have ordered from Greek sites and paid only for it never to arrive (there are serious supply issues)
Essential to test Vitamin D, folate ferritin and B12. These may need supplementing first
Always get actual results and ranges
Are you in UK
Email Louise af Thyroid UK for list of recommended thyroid specialists - if you had T3 prescription this would enable easier supply from Germany or France
I do hope that the tablets arrive, it took me long enough to get money to them. My plan is to see if they are helpful and then see if the doctor can prescribe although I don't think they do prescribe t3 here - may be wrong - just very confused.
I live in France and buy T3 every month without a prescription. Why don't you do the same. It is made by Sanofi in France by Aventis and is called Cynomel.
Just order it from your local Pharmacy in the morning for afternoon pick up. For two boxes the price is 6.96 Euros. They may have it in stock.
Well I am just starting to wonder about this. I am not sure why the doctor has not suggested prescribing it also. I will ask the chemist and see what they say. After so many years of visiting the doctor you would think they would have mentioned it. Having said that I am never that bright by the time I have got myself to the surgery.
In fact I may email the pharmacy now - then I would know one way or another.
Still not sure how much of the stuff to take. How much and how often do you take it?
Well I don't visit the Doctors or Endos in France they never do the full blood tests and are pretty useless when it comes to the Thyroid.
I treat myself now. It's only a suggestion but I just walk into the pharmacy and simply ask for the T3. Order two boxes. If they do ask you for a prescription just say that you will pay for it in full. They then order it in for the afternoon.
What are you taking now. Then when you have it ask on this site on how and when OK?
I have no thyroid it was removed in France in Oct 2015. I take NDT myself. I have just returned from the UK with my full blood tests and the only thing wrong with me is the Thyroid itself. I am just about to start on T3 alone.
If you ask the Pharmacy and talk about the Doctor they will probably not order it for you. If you want T3 just simply ask for it not their opinion then go on this site you will find people with knowledge who will help you. I am sure that you will not take my advice but I have tried and can do no more.
There is a facebook group called T3 Support which follows Paul Robinson's approach to using mono-T3 therapy, and advises members accordingly. You might want to consider joining, and/or checking out his books. The approach is to monitor vitals rather than blood levels to guide dosing, which is especially good if someone doesn't have Dr support.
I get cynomel from France under special license but as I understand it it’s prescription only and the pharmacy’s cannot give without a script anymore in France. I guess it depends how lucky you are.
Cynomel is a good T3 and stronger than the Greek one which is quite weak in comparison.
Hi France, you DO have a dilemma and I think your doctor feels your FT4 and TSH are both too low so immediately put you on straight T4 to counteract the both. What bothers me is that 100 mcgs of Levo only got you to 9.88 on the range (lower third). I'm not certain what it should be when you are taking that combination, T4 is usually on the lower side when adding T3. It would be nice to know what your reverse T3 is as that could explain your symptoms.
This is very complicated so maybe someone else has some ideas. I'll say that T3 had a short half life of less than a day while T4 is two weeks which means it is in your system a lot longer. I would also add that the cofactors of ferritin, folate and B12 which help to convert T4 to T3 may be deficient and D3 makes all the hormones work so those may have to be dealt with first if they are low.
It's probably going to be trial and error. It could also be your adrenal glands causing reverse T3. This website has a good index of explanations. Sorry I can't be more help.
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