Hashitoxicosis help please

Me again! I have now been taking my B12 complex and B12 lozenges for 2 weeks and have also changed my Levothyroxine to night time about 3-4 hours after any food. I keep expecting to have a sudden burst of energy or feel better one morning, but it doesn't seem to be happening!!

I think the worst thing for me seems to be my low mood, crying and insecure feelings - this really is not what I am normally like. Any tips/strategies for getting out of these low moods would be gratefully received.

I have started my gluten free diet this week,

I have now received my letter from the Endo that I went to see before Christmas and he has stated that I have Hashitoxicosis and he feels that although my GP suggested antidepressants, he feels that I can manage on my own , which I was quite happy about as everything that I have read seems to point to not taking antidepressants. My Endo also advised me that the reason my Levo is not working, is because he feels that all of my symptoms are nothing to do with my Thyroid. (although not really sure what he thinks that they are due to!!)

After reading so much literature and trying to educate myself about the condition, I seem to go through phases of 'I will beat this', to 'this is completely unbeatable'!!

Anyway, the things that I need to ask my GP to do at my next appointment:

* Test for Ferritin

* Test for Vitamin D

* Not going to ask about test for Gluten as I was going to go gluten free anyway.

* I understand that TSH levels should be around 1 for optimal health - so as mine were higher than this previously, I should ask for a rise to 75mcg

* My TPO levels should be within normal range but as they were 416, apart from Gluten free diet, should I be doing anything else to reduce these?

I also have a question - If my antibodies are killing my thyroid and I have Hashitoxicosis which is causing a swing from Hypo to Hyper from one hour/day/week to the next - rather than slowing down the process of killing off my thyroid and spending x amount of years waiting for it to be killed off completely, why don't we speed up the process of killing off the thyroids so that the swings from hypo to hyper are over quicker then the Levo that I would be taking would be the exact dose for my constant levels which may level out my mood swings?? Or is having the thyroid removed completely a much better option?

I'm sure there may be very good reasons for not doing this, but it seems strange that we have to spend a long period of time trying to get everything so finely balanced and after all that I have read, it is a bit daunting to think that they may never be balanced.

Incidentally, how long does it normally take for the thyroid to die off completely?

Finally, could you please remind me what the optimal range for T3 and T4 were please.

Thank you in advance

13 Replies

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  • Hi Jillycee

    I'm in the same boat as you, was diagnosed hashis after a hyper state in July ( via bloods and symptoms) , and as you, I feel like I'm swinging from one state to the next, and all moulding into one, some days. My Endo told me the nhs won't treat me until my TSH is over 5.5 and my FT4 below range, I am now, "apparently" "normal" as TSH at last test was 2.40, but mu FT4 is only 11.8. I feel anything, but normal! I asked how long the killing off of the thyroid could last, and was told, months or years! Just got to put up with it. What makes you say about hash toxic? What were your last blood results?

  • Hi Caz1stuk

    I'm sorry that you are feeling poorly too!! It seems so strange that there are so many people feeling so bad, but yet it's not a high priority to help us all!!

    My TSH levels last time were 2.63 (0.35-5.50) and my TPO antibodies were 416 (0-60).

    They started me on 50mcg of Levothyroxine back in June as my levels were 7.81.

    I visited an Endo in November and he told me I had Hashitoxicosis

    Oh my goodness, can't imagine feeling like this for years!!

  • I know! My heart sank when she said they wouldn't do anything. I told her that I cant live like this, and her answer was, " well , you do know hashis attacks make you feel really bad" Erm..... Yes! My TSH went from below ref, then shot up to 11, but started dropping again. I'm glad tho, yhat at least your being treated. Have they mentioned a scan to you?

  • Isn't hashiroxicosis when your hyper? ie when the tsh is supressed and the FT4, and FT3 is way above ref range?

  • I know, I was really pleased when they gave me a diagnosis as I thought that I would be able to treat all of the symptoms and start feeling better. However, I have found it an absolute minefield trying to wade through all of the information out there!!

    Nobody has mentioned having a scan.

    Yes Hashitoxicosis is swinging from hypo to hyper, so it is really hard to feel 'normal' at any one time!

  • The problem is that doctors/endos know very little about thyroid. In order to stop the Hashi's swings, and slow down the destruction of the gland, the TSH should be suppressed. But, in their ignorance, they are terrified of a suppressed TSH. They think it's going to give you a heart attack and osteoporosis. They Don't realise that the TSH has nothing to do with hearts and bones. And that hearts and bones are in far greater danger from low T3. They Don't understand T3, either. They think it's 'dangerous'! It isn't.

    If you were treated correctly, you probably wouldn't feel so bad. That's why so many people self-treat, in order to get a decent dose of the hormone they desperately need. For the most part, doctors Under-treat you.

    Having the gland removed is not the quick-fix that so many people believe it to be. Because the problem is not with your gland. It's with your autoimmune system. What you need to do is find a way to slow down your immune system, like having your TSH suppressed.

    Your endo is totally wrong about your symptoms being nothing to do with your thyroid, but that's because he has no idea what the symptoms are! Depression is one of them. But if he gave you a decent dose, you would be able to manage it on your own!

    A TSH of 1 might be ok for some people, but it has nothing to do with optimal health. It dépends what your FT3 is. That's the most important number. The TSH is more or less irrelevant because it rarely reflects thyroid status. That is a myth. And doctors/endos believe it, along with all the other myths. As I said before, a suppressed TSH is best for Hashi's people. So, yes, you do need to ask for an increase to 75. And every six weeks you should ask for another 25 mcg until your symptoms have gone. But you might have a struggle on your hands, because doctors/endos just Don't understand the necessity for this.

    The gluten-free diet might very well help you. If it doesn't, try a dairy-free diet. Or a sugar-free diet. Whatever you do, avoid soy like the plague.

    The optimal levels for FT4 and FT3 are the ones that make you feel well, not some magical number on a lab sheet. :)

  • Could you tell me how I work out what my optimal range should look like for FT3 and FT4? I understand what you are saying about how you are feeling, but all I have been told is that my FT3 and FT4 are in 'normal' range. There were:

    Serum FT3 4.8 (6.5-3.5)

    Serum FT4 12.6 (11.00 - 23.00)

    Thanks

  • I Don't understand your question. I cannot imagine a way you could work out your optimal range. There are the ranges that the lab uses (although I think you got the one for FT3 a bit wrong!) but there's no way you can know in advance where in that range you're going to feel well.

    All I can say is, you're not likely to feel well with those results (assuming that the range for FT3 is 3.5 - 6.5) because they are very low in range. Most people need their FT3 to be up the top of the range to feel well. But, we're all different. You might feel best with it mid-range. Or even slightly over-range. But, there's no way of telling in advance. Sorry.

  • Ok thank you. It is all so confusing. I will hopefully pick it all up soon.

    I have double checked the test results for FT3 and my result was 4.8 and then the range next to it is typed as pmol/L6.50-3.50

    Thanks again for all of your help

  • Oh, you'll pick it up soon enough. None of us were born knowing all this! We just had to teach ourselves out of necessity, due to doctor ignorance.

    Anyway, someone made a mistake there, because ranges go from bottom to top. There it's top to bottom. lol

  • Thank you Greygoose for all of that info. I will definitely try and sort this out with my GP. One final question, is Soy the same as Soya or this something different?

  • It's the same thing. :)

  • Could you tell me how I work out what my optimal range should look like for FT3 and FT4? I understand what you are saying about how you are feeling, but all I have been told is that my FT3 and FT4 are in 'normal' range. There were:

    Serum FT3 4.8 (6.5-3.5)

    Serum FT4 12.6 (11.00 - 23.00)

    Thanks

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