Is anyone getting better

It is 3 years and a lot of expense since diagnosed as hypothyroid by Dr Skinner. He said it would take a long time for me to get well but I feel so discouraged after trying a multitude of supplements and thyroid meds. Have other people got well or are we all just going round in circles advising each other. Please share some good news. I need hope.

14 Replies

  • I feel very well.....I am on t4/t3. It has taken a while and been a long learning curve but I got there and so will you! Don't loose faith and never stop fighting for your health! Xx

  • Hi mandyjane,

    The answer is 'yes' we can get well but first we need an Endocrinologist and a Doctor who have some idea of how to help a patient to progress to a healthy and pain-free patient.

    Unfortunately, these seem to be very few and far between and the only way to achieve this is to join a forum like you've done and read and learn as much as possible.

    It took me around five years to find a way through a maze of inexplicable ill-health and finally was diagnosed by a person who did first aid - one week after being discharged from an overnight stay in the A&E cardiac dept as 'probably viral with high cholesterol' and was bedridden. My TSH (never was checked) was 100.

    Thereafter, and looking back, I was astounded to find I developed even more symptoms (now know they were clinical symptoms). It took several years to find a solution.

    Today I am fit and well again but had to go through lots of adjustments/money and trial of different thyroid hormones. I now take T3 only .

    Many people do well on levo alone (they wont be on this forum) but many do not because their doctor either keeps their TSH 'in range' whereas we need a low or even suppressed TSH to raise our metabolism. Others cannot tolerate T4 (levothyroxine) or cannot convert to sufficient T3. (T3 is the active hormone required by all our receptor cells).

    If you are on levothyroxine alone, I would ask your doctor to add some T3 (many wont so you'd have to get your own). The up-to-date info on T3/T4 is 1 T3 to 3 T4 (or the equivalent which makes the patient feel well) i.e. 25mcg of T3 to 75mcg T4.

    It is amazing when you finally get your hormones at an optimum which suits you.

    Sometimes also it may be fillers/binders in the tablets which cause us problems (levothyroxine and liothyronine are orthomolecular so don't cause problems but we need sufficient).

  • I don't feel 100% well yet. But two years ago I would have given my quality of life a score of 2 out of 10. Today I would give it a score of 8 out of 10 on a good day, 6 out of 10 on a bad day, so I think that is progress.

    I've improved lots of my nutrient levels and I take T3 only. I've tried Levo, and also NDT, and also spent some time unmedicated, but T3 seems to hit the spot for me. I went gluten-free at the beginning of the year. I have increased my levels of T3 very slowly indeed. I have high cortisol and trying to force the pace just doesn't work for me. I often have to drop back in dose for a few weeks, but eventually I can go up in dose and do okay the second time around, and feel stronger in the end.

  • I also have very high cortisol. Can you tell me what you take for it? I take Cortisol Manager but last saliva actually went higher in two areas.

  • I've tried all sorts of things to lower cortisol, but in the end nothing really helped much. I haven't tested my cortisol levels for over a year now, but given the way I feel I suspect it may have lowered. What I've been doing is taking an indirect approach. I think that one cause of high cortisol is physiological stress i.e. my body isn't/hasn't been in great condition because of low nutrient levels and gut inflammation. So I've been making sure my vitamin and mineral levels are brought up to optimal levels and are kept there. In order to do this I had to go gluten-free to improve the function of my gut, and I've had to be as ruthless about it as possible - no cheating at all, although mistakes inevitably happen. I can't say that I've noticed an obvious improvement in the health of my gut but the numbers on my blood tests prove that something good is happening.

    I've also reduced the amount of refined sugar I eat, lowered my carb intake generally, and increased my intake of healthy fats and oils. I haven't taken anything to extremes, although I really do want to eliminate refined sugar entirely - sadly, the spirit is willing but the flesh is weak!

    And as far as taking T3 is concerned, I started low and increased very slowly indeed, by 1/4 tablet at a time. If I felt hyper at all I dropped back by 1/4 tablet for a little while longer then raised again. It has taken me 7 - 8 months to get up to 1 and 3/4 tablets per day, and I'm still not sure if I'm at the right dose. I think I'm close, but I'm still not sure.

    I should point out that I'm not as hypo as a lot of people here, and I've never had positive antibody tests. Whether a severely hypo person with Hashi's could go as slowly as me in raising T3 is possibly a bit doubtful.

  • Thank you so much for your reply. This is such a puzzle but it certainly seems like you have found the answers for yourself! I am very careful and specific in what I do.....but with my high antibodies and high cortisol, I cant seem to find the right thing that helps. I am taking balanced vitamins too.

    Again, my sincere thanks for your reply, Humanbean. I will have my next Hashis bloods drawn next week but no cortisol of course as its bloods. Maybe that will give me a clue about increasing NDT or adding T3.

    Happy day to you!

  • For info on reducing high antibodies, take a look at these links, all by Izabella Wentz. She is a Hashi's sufferer herself :

    Her stuff gets good reviews, and there is a lot available on the web.

  • Thank you....Thank you HumanBean! I will read these! I have two of her books. She is really very good at what she does!

  • Hi mandyjane,

    I asked this once and had several positive replies (some from admin) so I think there are successes ....we just don't always get to hear of them.

    Remember the majority of people on this forum are here because they ARE UNWELL and looking for an answer.

    There is so many considerations to be taken into account....optimal levels of nutrients known to affect the thyroid//meds//other meds...other diseases...adrenal health....diets....drug ///supplement is actually a mine field and those who do get there are very lucky.

    But DON'T GIVE UP because we are all learning together and this forum and support is only what has helped me get this far.


  • Hi Mandyjane, yes me too feeling normal at long last. I'm now on t3 only after also trying all other combinations. I could have easily given up when starting on t3 as i know now it does not work for me when i have t4 in my system either synthetic, liquid or natural form.

    It takes a lot of experimentation which a lot of people aren't confident in but with knowledge come that confidence and hopefully you will find what works for you.

    I know now if i was told to take my t3 in a certain dose at a certain time then i would of given up as it just wouldn't have worked.

    I go by what my body tells me and take and increase or decrease my dose by how i feel. Luckily i have help from my GP and am yet to find out what my endo now thinks but that doesn't worry me.

    I'm alive again now, thats all that matters.

    Sparkly x

  • Hello

    I'm at a point where for the most part my dose is right and I have so much more energy than I used to, but I am very aware that this is just because everything is balanced at the moment.

    If I'm on the right dose and eating well and mentally dealing with things then I'm really good, but if any of those change then I can feel rubbish again. So I don't think it is a case of getting well, my thyroid is broken and I need to compensate for that which is anything but an exact science, but rather feeling on top of it.

    This forum has really helped me to be confident in listening to my own body and taking control - thanks everyone

  • Yes I am heaps better than I was last December when I was diagnosed hypo.

    As someone else gave a point core so will I! I'd say 4 out of 10 before diagnosis, dropping to 2 out of 10 when I started treatment on levo, now up to around 8-9 out of 10 on NDT,T3 and pregnenolone.

  • Mandyjane, For 15 months I was 90% bedbound with pain and weakness. I've felt well for 18 months on T4+T3. This isn't the same well as prior to thyCa, but 80-90%. Fitness was lost during illness and inactivity but are improving slowly and gradually. I still need to pace myself else I crash but energy and stamina are still improving.

  • After a total thyroidectomy, I spent two years in hell, with terrible health that was getting worse and worse. Now I have been year on T4 + T3 combo and essentially back to normal.

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