I had a fleeting glimpse of feeling better but just seem to be getting worse. Am taking 150 mcg T3 and 8 x Isocort daily in addition to mega dose vit C etc etc.
Feeling so tired, my body is bloated particularly stomach, fingers, feet and ankles. Also having hot sweats, brain fog has returned together with dyslexic tendencies.
Just wondering whether anyone has not got on with T3 or it didn't do anything for them. I need to contact Dr P for advice but hoping there's something I can do in the meantime.
Sorry you are having such a rough time. That fleeting glimpse suggests that you can feel well again, it just may take some time and a little fiddling about.
Have you been monitoring your temperatures, BP and pulse throughout the day? This could help to let you know if you are not taking enough or even taking too much. Sometimes too much can give you hypo symptoms and vice versa which just makes things really complicated so knowing your temperatures can help you decide which it is.
It may be that you need to adjust the timings of your doses. Some people who have significant adrenal problems find they have to dose more often than 2 or 3 times a day that less severely affected people do.
Another thing to look into is Paul Robinsons Circadian T3 method where you take your first dose 1.5 hours before you get up. T3 is needed to produce cortisol and most of your cortisol production occurs in the last 4 hours of sleep, therefore taking it early and going back to sleep (or just resting in bed in the dark) can help your body produce the cortisol it needs. Some people find they need to take it more than 1.5 hours before in order to get good results.
Iron, B12, folate and vitamin D are also important. If you have any deficiencies here that could be contributing to the problems.
There are others on here that know a lot more about this than I do so hopefully someone will be able to help you more, but hopefully I have been able to help a little. Sorry if I haven't
Take care and try and get some rest if you can. I hope you see some improvement very soon. (((Hugs)))
Carolyn x
Carolyn - thanks very much for your reply. I've not been monitoring but I guess it's something I should start. Have tried the CT3M and had to stop due to insomnia together with severe headaches and nausea from having my sleep disturbed. Just take first dose when I wake up.
Have had comprehensive thyroid profile blood tests done privately and all OK there. Am wondering whether it would be worthwhile getting the adrenal one done.
Also am seriously considering a SAD light box, the gloom is really getting to me!
It might be worth getting the adrenal test done if you can. At least then you will know.
I have a SAD light box and it does seem to really help in the mornings. In turn I found that I slept better at night. Just make sure you only use it in the morning and never after 4pm.
When you had your thyroid profile done, did you get a reverse T3 test? If so, do you know what the ratio of rT3 to T3 was? This will give you an idea of whether you have a conversion problem. The adrenal profile will let you know whether Isocort is the right way to be going too. Did you feel any better on Isocort?
I am only making suggestions here that suit me. Have you tried taking your t3 at bedtime . I do that and take 60 or seventy depending on my restless legs. If they are bad I take 70 otherwise it is 60mcg and sleep fine. Maybe worth a try. The bedtime dose suits me much better than spreading the tabs out during the day. Good luck what ever you do.
The fact that you have bloating etc I think you may not be on enough hormone but I am not medically qualified. I know how disappointed you must be when your hopes are lifted when trying an alternative to Levo. I had to try a couple of different things before finding something that suits me.
I am not sure if this will help but Dr Lowe talks about thyroid hormone resistance:-
March 17, 2000
Question: You and your coauthors have written that many fibromyalgia patients are resistant to thyroid hormone. From what I've read, thyroid hormone resistance is hard to prove. How do you know when a patient is resistant to the hormone?
Question: I was on a fibromyalgia discussion group last night. The subject of discussion was patients who have thyroid hormone resistance. Someone posted that you believe plain T3, taken once a day, is more effective than sustained-release T3 for these patients. This seems contrary to the belief of Dr. Dennis Wilson. If you believe this, why would plain T3 be more effective?
You could be taking too much. I had this problem and my GP (brilliant man) explained it like this: when you're hypo your body revs up to try and cope. When you take too much your body is pushed into overdrive working even though it doesn't need to be. It compensates by trying to slow you down. Effectively there is a narrow band where you will feel 'well' under or over that band - you will produce symptoms. Although I found over unpleasant they were not as bad as under symptoms.
I was taking 150mcg of T3 and it was too high. You should note as well the effects of taking different brands. Tiromel is weaker and a big 'rougher' i can't explain it any other way than France's UniPharma product. Also Cytomel is very strong so if you're taking 150mcg of Cytomel, then that is more than say Tiromel mcg for mcg. I hope this helps.
deskplant - yes I guess that's possible so have just started reducing dosages. Hopefully that will help!
Hi Cinnamon,
I know you've been having a rough time from your previous posts. It's very discouraging sometimes, but there's always something else that you can check out. Have you thought you might have a gut problem? If your intestines cannot absorb hormones/vitamins/minerals (however much you are taking) then they will pass straight through. It is well worth looking at Dr. Myhill's site drmyhill.co.uk/wiki/Ferment... My daughter has been taking L glutumine (to heal the gut) and making kefir for nearly a year (it's delicious). It has helped her a lot. She has stopped taking ALL the adrenal meds she was taking except for 3 isocort per day, and now has no bloating or abdominal pain and has lost over a stone in weight and doesn't miss the adrenal support at all. She still takes 125 mcg T3 in the morning - can't tolerate Paul Robinson's method either - she found it exhausting. Dr. Myhill's gut regime is very inexpensive which is a bonus. It's not been the complete answer for her but these things are always worth looking into and one day I know we'll hit upon the complete answer. It might be worth you checking it out too.
Also have you thought about taking adaptogens to support your adrenals - they've helped too?
Thank you so much for this link, Jane. I have been dealing with unexplained abdominal pains for a while now and the doctor diagnosed 'acid-indigestion' and promptly prescribed Omeprazole... Needless to say it hasn't got any better, but reading all the info on that link has now explained why! I shall not take it again!!!
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Hi Jane and thanks for your helpful replies. Yes my next step is nutrition and have been looking at Dr Myhill's website. It does seem reasonably easy to follow without spending huge amounts of money on odd products.
Did your daughter start taking L glutumine at the same time as she started following Dr M's eating plan?
Can I ask what is kefir, also adaptogens? Will look into magnesium deficiency too.
Lots of info to investigate - thanks!
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Kefir is a yogurt product (several different bacteria). Caroline makes hers with milk, but I think Dr. M. makes hers with soya milk. She started by using the L-glutamine to heal her gut, then added kefir which we bought online. You only need to buy it once as once it's made you can use a small amount to start the next batch - like the old ginger beer plant! It's about £10 for 3 sachets and we bought it from buykefir.co.uk This time last year she was in considerable pain and I found her a couple of times with her head over the toilet because she was in so much pain she felt constantly as though she was about to vomit. That has long gone now.
The flavour of the kefir reminds me of the delicious yogurt we used to get from the milkman about 50 years ago in a small glass bottle. I love it.
Adaptogens regulate adrenal efficiency making them work harder or less hard depending on how inefficient they are.... or not. Caroline finds Rhodiola Rosea best for her, but there are at least 3 others, including ashwaganda, and a couple of the ginsengs (I can't remember which - I'll ask her).
I went to great lengths to persuade my Endo to prescribe T3 a couple of years ago, it was a total disaster for me. Tried to follow Wilson's protocol and wound up hyper - result? Endo refused to prescribe it again but I wouldn't take it alone or in such high doses again. Pushed my blood pressure up , gave me chronic headaches and made me feel even more ill than before.
I now use Nature Throid which seems to be effective, I have grave doubts about T3 alone given my own experience but still think I need some T3.
I know a lot of people push T3 but for me it was not the answer and I would be very wary about some of these high doses, accepting that everyone is different I still think there are a lot of concerns around T3 alone.
For may of us it is not the answer and I'm one of those still searching for the definitive answer, doing better on Nature Throid combined with levo, alternate day fasting, B12, ubiquinol, multi vits and vit D.
My gut problems turned out to be lactose intolerance (took a lifetime to discover that one!) but the difference it makes eliminating lactose from my diet is astonishing. Also doing alternate day fasting which is very effective for me.
Don't know if anything I've done will help anyone else but I've made major improvements in my health, just need to get those darned hormones sorted out!
Hope you find the combination that helps you soon but do be careful about too much T3, as with all things thyroid the symptoms creep up slowly and build up.
I would certainly consider the possibility that you may be taking too high a dose. My wife has been in this situation a couple of times and the toxic symptoms of too much T3 are pretty awful. On each occasion she reduced her dose and was amazed how much better she felt.
Paul Robinson, when he felt that he was getting close to his optimum dose of T3 would only proceed by making tiny ( 2.5 mcg ) increases of T3 at a time.
David
Hi Cinnamon,
Just another thought. A lot is written on this site about B12, Ferrtin etc. and their deficiencies.
One source I have suggests that magnesium deficiency is also very common in those with chronic diseases. Magnesium cannot be properly measured in serum (surprise, surprise!!), and should always be tested intracellularly (not something available on the NHS I venture to suggest!). Cells apparently need magnesium inside them and calcium outside. When leakage either way occurs this causes problems.
Deficiency can result in fatigue, muscle problems and weakness, manual treatments (e.g. chiropractic) that do not hold more than a few hours, depression, cardiac arrhythmias, cognitive impairment, insomnia. The best treatment apparently is by intravenous drip, but failing that magnesium taurate is suggested.
Hi I take T3 only and take it four times a day. I have tried several different meds and i have found this the best for me. However if i try to increase it i get hot sweats, headaches, ache all over and feel quite unwell. I have to cut down for a couple of days and then i feel back to normal again. (whatever normal is). I also found that when i started taking T3 i had terrible stomache cramps and pains. Someone on her suggested putting the T3 under the tongue instead of swallowing it and it worked straight away. I hardly get stomache cramps anymore. Also i noticed that now i have cut wheat out of my diet i can tolerate taking a bit more T3. Dont forget everyone does better on different doses, and T3 is a lot more potent than other meds. Hope this might help.
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