Hi guys, I am on NDT, currently 2.5 grains. I have confirmed I have the genetic conversion problem and I've found I only feel optimal when my free T3 is right at the top of the range. Even slightly below the top of the range causes me to be symptomatic and my hair starts dropping out again.
My last test in May was TSH 0.007, FT4 17.2 (12-22) and FT3 6.83 (3.1-6.8). I felt good.
I've been feeling a bit more depressed recently, although could be weather related. Did a test this week and my TSH is now 0.005, FT4 14.8 (12-22) and FT3 5.96 (3.1-6.8).
Given that I need my FT3 to be as high as possible, and based on the way I am feeling, coupled with these latest results, I was thinking about increasing to 3 grains every other day. The Doctor's response on medichecks was that I am at risk of osteoporosis and heart problems with such a suppressed TSH, and should decrease my medication.
My first instinct is to ignore his advice, because I know that my TSH is supposed to be suppressed when on NDT and I feel I need to get my FT3 just that little bit higher, however, I have read an article stating that any level below 0.03 puts you at risk of cardiac events and bone problems and mine is always way below that when my FT3 is optimal. sciencedaily.com/releases/2... Typically I ignore Doctors' pronouncements on this topic, but since this was a study, should I be paying more attention?
So I wonder if any of you experts have any advice? Is this a complete red herring (how can it be when this study was based on 16,426 patients)? Is it worth considering T3 only or is it just as likely to suppress my TSH to the same level as the NDT does?
A study that just looks at TSH and ignores the FT3 level deserves to be ignored.
T3 only would suppress your TSH just as much - if not more - then NDT. I've been on T3 only for years, but my TSH was suppressed long before that.
Yes, I see what you're saying. And my further research tells me that many untreated hypo patients would have bone loss anyway, from being too tired to be active, so any such study would include a proportion of those patients as well.
I guess as being treated for hypothyroidism is supposed to increase the metabolism of all systems, I suppose if you already have bone loss going on, it could be increased if your metabolism increases. I know I've read that somewhere actually.
I guess I did know the answer to my own question but the constant mis-information is hard to deal with because even when you have done a lot of research and carefully planned everything, the doubts creep in from time to time. Certainly I feel miles better but I am a tricky case and have had to do this all on my own because I've never been diagnosed due to my normal TSH being around 0.8 so there's an extra level of anxiety and self-doubt involved there. Nearly all of my symptoms have reduced or gone completely and the main thing I still suffer with is my weight, but I think that's mainly still due to lack of exercise. I just noticed the low mood creeping back in, and for me, the slightly reduced FT3, the recent weather, and external stressors could be responsible for that. Just trying to decide whether to increase slightly, every other day, or just stick where I am for another couple of months.
I'm now anxious again about how I will deal when I start getting doctors on my case about my very suppressed TSH in the future if my IVF treatment works. I have prepared a 20 page dossier to take to appointments which has my entire history and lots of extracts from studies and papers etc but it's still quite worrying.
Ignorance is always worrying. And doctors are very ignorant when it comes to thyroid. But, there is plenty of research that says that a suppressed TSH when on thyroid hormone replacement does not increase your risk of heart and bone problems.
I take it you have a pituitary problem if your natural TSH is only 0.8? Very few doctors know anything about that!
I don't know if I have a pituitary problem, but it must be. I know I do have a conversion problem and I did have an rT3 problem initially as well (I think that was mainly due to other deficiencies of which I had a lot. I also have a long history of anxiety and depression and at least a hundred other known thyroid symptoms.
I gave up trying to get the doctor to understand my symptoms. He absolutely insisted my thyroid was completely normal based solely on my TSH and the fact that I wasn't missing the outer third of my eyebrows, and he started mentioning fibromyalgia and CFS, and I just gave up and sorted it out myself. I initially thought correcting all of my vitamins would sort the problem and had to work hard at my lowest point to get B12 injections out of them. That was a total nightmare to get the full loading doses and then they just cut me off once my level was up to above the range. It was ridiculous, so I just started doing it all on my own.
I've corrected all my vitamin and mineral issues now, although I am still not happy with my ferritin (last result was 84 (13-150)), so I am still working on that one.
My biggest anxieties are being questioned if I become pregnant, and whether there might be something more sinister going on which caused the problem in the first place. I think this worry about anything sinister is unfounded though because I've been on a downward spiral for so many years, I think something more sinister would have presented other problems by now, but it does worry me from time to time. I just can't push the medical profession any more than I already have and have been forced to take things into my own hands.
Yes, I understand. I had no problem getting diagnosed because my TSH was 11.5. But trying to get good treatment after that was a nightmare. I now self-treat, too.
Perhaps, once your body gets used to having good levels of FT3, you won't need IVF, you'll get pregnant naturally.
You're right. The route to diagnosis can be impossible, but even when you have been diagnosed, you might have to go it alone to get optimal treatment.
I think due to my age and very old eggs, that will now be out of the question. There are other factors as well, so we're unfortunately stuck with the IVF as our only hope now. But yes, for others, fixing the thyroid definitely gives them a much greater chance.
I'm so sorry to hear that. But, you could find a sympathetic doctor to help you with the IVF. They must see it all in their job.
They do see and correct a lot of thyroid issues, but there's no way my clinic would understand the thyroid self-treatment, so I just don't go into detail about it. I gave them my levels before I started and they didn't query them. They haven't requested another thyroid panel and I've been with them for over a year now, so I don't expect they will.
I've researched what I need to do about monitoring and dosage during a pregnancy to make sure baby is OK, so the only issue I will face would be when the NHS monitoring kicks in and they do a thyroid test. The suppressed TSH then will cause a big concern and they will do their best to try to convince me I am insane and doing it all wrong and will harm the baby. So I am have prepared for that with a huge document containing all the information I've found.
Well, it sounds as if you've got it all worked out, and that's great!
I wish you lots of luck and hope you get pregnant soon. xxx
Thank you so much.