Desperately ill and can't find relief

Hi. I posted a couple of years ago with serious concerns and I just keep getting worse and can't find relief from my symptoms. I have Hashimotos and cannot utilise or tolerate thyroid hormone no matter what combination or type that I try (straight T4, combo T3/T4, NDT or T3 only). I feel so very ill and can barely function.

I have other issues too - it looks like I have lyme disease and I also broke a hip 6 years ago. The surgeons couldn't align the hip and now I have mobility issues (can't walk in a straight line, feet are very arthritic, bone and joints and muscle pain everywhere).

I have lost 2 stone and am skin and bone. I eat but never get hungry. I'm gluten free, take supplements and am treating my lyme with herbals. However, I can't get my thyroid hormones balanced; on T4 only, I don't convert very well and on 125 of mcg a year or so ago, my readings were T4 22.2 (12-22), T3 3.6 (4.0 - 6.8), TSH 0.13. An endo prescribed T3 and I took 50 mcg of T4 and 20 mcg of T3 and both readings came out under the reference range with a suppressed THS. I tried NDT (several brands) and couldn't tolerate them - felt very spaced out. T3 in general spaces me out, T4 appears to give me worse headaches.

I'm confused over my lyme symptoms and thyroid symptoms and cannot differentiate. Regardless, I need to get thyroid hormones into range but feel more ill when I try to increase. My bones are hurting more and more and I can barely walk for pain, weakness and muscle wastage.

I had my adrenals checked and synacthen test showed they worked. High morning blood cortisol was high and went higher after ACTH. My adrenal saliva test results have been mixed over the last few years. The first one done almost 4 years ago showed high morning cortisol, then lows during the day and normal at night.. The 2nd adrenal saliva test done in Nov 2013 showed 3 bottom of ranges and then higher at night. Dec 2014 showed low morning, normal mid morning, high in the afternoon and normal at night. I tried HC in the summer of that year but didn't improve with it and now I know that I have lyme, I know that I am not to take it according to all of my research and what others say on forums.

My ferritin is currently 71 (13-200). My recent B12 was high so was my folate so I'm reducing B supplements and I'm not sure why folate is high. I supplement with a lot including Vit C, magnesium, selenium, CoQ10, calcium (I have osteoporosis), Vit D, zinc, 2 drops of nascent iodine and herbs for lyme. I am so exhausted and in such pain.

I get the most chronic headaches, dizziness and anxiety. I'm so weak and hardly have any muscle; even listing a kettle hurts. It takes me two hours or more to get out of bed after I wake, I feel like a zombie and then I hurt like mad all over; the pain in my joints and muscles and bones is chronic. I get so dizzy and lightheaded most of the day that I can hardly function.

I'm at my wits end. Doctors just passing me off with the usual dustbin dx of Fibromyalgia (which I now I have), chronic fatigue, depression and they say that there's nothing else wrong. Endos haven't got a clue.

I aplogise for the long post but needed to explain and even this post excludes a lot of what I'm suffering - I just don't know what to do to help myself improve my thyroid function. I saw Dr S before he died and he said I'm obviously still very hypo even though I'm skin and bone. He wanted me on 100 T4 and 30 T3 but I can't increase to that level as my body can't cope. I saw Dr P who advised me to take HC and take T3 only but I had already tried that and failed miserably. I don't know why I can't improve - please can someone help. Once again, I apologise for long post.

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  • I really am not able to comment on the Lyme as I do not know enough about it.

    Your B12 levels will be raised if you are supplementing - and the tests are worthless.

    What are your VitD levels ? How much are you taking ?

    Calcium - how much are you taking and did you have it tested before supplementing ?

    K2 ? - maybe take some to ensure calcium is directed to your bones and not left in the arteries.

    Am wondering if the iodine is upsetting you - could it be you are now optiml and do not need more. Again I do not know a great deal about it - but have read the jury is still out. Take a look at the website of Stop The Thyroid Madness and see if you can find the recent article written about Iodine. I have just received in their Newsletter - but cannot link it :-(

    Have you considered going gluten free to heal the gut ? It could help as it can be pro-inflammatory. Of course we are all individuals. You could take a look at Dr Sarah Myhills website where she has good advice about osteoporosis....the supplements and the diet advice.

    drmyhill.co.uk/wiki/Lyme_Di...

    drmyhill.co.uk/wiki/Osteopo...

    Hope you soon feel stronger....

  • hi martz she is gluten free.x

  • Hi Marz

    I only started iodine recently - past few weeks and yet I have felt very ill for over 4 years now so it's not directly the iodine.

    Not sure if I'm supposed to be supplementing vit b then if tests are worthless.

    I only take about 300 mg of calcium via supplement as don't like the thought of too much even though doc said I need more for oesteoporsis.

    Vitamin D is about 2/3 in range (can't remember figures).

    Vit K is included in my calcium supplement.

    Thanks for the links - I have already seen those but thank you anyway.

    My problem is trying to figure out why I can't tolerate my thyroid meds and hoping someone may have some clues.

    I'm falling apart and don't know why.

    I am gluten free.

    Thank you again for getting back to me.

  • Do you know your calcium level ? If its high it will make you very unwell.

  • Thanks for responding Bantam

    The only calcium level results that I have are when I have liver and bone bloods done and calcium comes back towards the lower end of the range. I don't over supplement with calcium even though I have low bone density.

  • You mentioned above that a recent test for B12 showed it was raised so you said you were not taking it. Once you are supplementing B12 there is no point in being tested as the results would be skewed. Only 20% of the blood result is available to be utilised in the cells where it is needed - so maybe you need to keep taking it. You cannot overdose as it is water soluble. B12 is also involved in bone formation - have a google to see.

    Perhaps you were taking just a B complex that included B12.

    Maybe look into the polymorphism that prevents the Folate being metabolised in the body.

    mthfr.net/

    saveourbones.com/low-levels...

  • Thank you Marz

    Yes, I think I will resume B12 then if I cannot overdose. I had 23and Me done and was advised to take B12 and whn my bloods were taken my GP said it was too high and to stop taking it. I was alternating between B12 complex (MTHFR) and straight B12 (MTHFR).

    I'll have to try and learn about folate - is there a problem do you know if it's too high?

  • Well if your Doc told you to stop taking B12 then he doesn't have a clue what he is talking about - sorry but it is a fact. He needs to read the Guidelines sent to all Docs where it clearly states that testing is not meaningful once a patient is supplementing.

    Not sure about raised folate - just drop the B complex for a few days a week - that may help....

  • Thanks Marz

    My GP's don't appear to have a clue with regard to anything that I'm suffering from - I've really begun to dislike them due to their lack of knowledge, compassion and understanding of my situation. I'll carry on with B's a few times per week.

  • I suggest you read the links I have posted above and learn as much as possible - then you will not be disappointed with your Docs as you will have your own knowledge and have worked out a way forward.

    Calcium ? Do some research about it and it is covered in the links I have posted.

  • Just a shot in the dark, but have you tried taking T3 only? It could be the T4 you Don't get on with. That was my problem.

    You are barely converting at all, so you've got all that unconverted T4 floating around in your blood, getting up to mischief. If it were me, I think that would be the next thing I would try.

    Are you supplementing that iron? I think it should be higher than that.

    Are the doctors doing anything about the Lyme?

  • Hi Greygoose

    Yes, I tried taking T3 only as I thought that this would be the answer but every time I take T3, I get really spaced out - even small amounts.

    What problems does the unconverted T4 cause - do you know what the symptoms and problems are. I feel so ill that I cannot differentiate any longer between symptoms and causes.

    Yes, I think I will increase my iron again and see if that helps.

    Have you any recommendations of how much iron I should take?

    No, doctors don't do anything about lyme here apart from 4 weeks of Doxy which is of no use. We have to treat ourselves which is expensive and lyme is so controversial and difficult to diagnose and treat.

    I'm so confused over my symptoms but I know that my head pressures, anxiety and especialy bone, joint and muscle pain are getting worse every day - I can barely walk a few steps.

  • Excess T4 that isn't converting into FT3, can convert into rT3, which blocks the T3 receptors so that the FT3 can't get into the cell. So, you go very hypo with all the symptoms that that entails.

    Also, just having too much unconverted T4 in the blood seems to make people feel unwell - just that, no specific symptoms that I know of, just generally unwell.

    I'm afraid I can't advise you on iron, best to post a new question to ask about that.

    Are you sure that none of the herbs you're taking are interfering with your thyroid hormones? Have you researched them all for that?

    What was your vit D level? How much are you supplementing? Bone pain sounds very much like low D3. Are you taking vit K to get the calcium into the bones, and not the tissues?

    Without knowing exactly what you are taking and how much, it's difficult to say much more, I'm afraid.

  • Thank you Greygoose.

    I'm not taking much T4 (50 mcg) for that reason but not sue if I should be taking it at all. My concern is that I just can't seem to cope with taking T3 either and that's why I'm so confused and obviously ill - such a minefield.

    I know I'm way undertreated because my last TSH reading a few weeks ago was 22 and I was trying to increase T3 so I'm in a mess.

    I'm sure that my receptors are well and truly blocked.

    I tried HC but didn't feel any better - just got diarrhoea after a few months and fungus so I stopped (gradually).

    The herbs I take are taken by other thyroid patients and they have no problem and I haven't read anything contradictory so I believe they are fine. I was ill for long before taking the herbs too so it's not the herbs.

    I take 2000 iu of Vit D and the last result was 96.5 (49-150). Yes, I take Vit K - it's in the Algaecal that I take. I posted on one of my replies t supplements that I take but can't remember where exactly - on this thread or the other with the same title.

    Thanks for your help x

  • Ok, so, just read your other post, and the thing that jumps out at me is that you are taking all those suppléments just one hour after your hormone.

    For most of them, you should leave at least two hours, but for calcium and vit D3, it should be four hours. And, as you're only taking tiny amounts, I doubt if any actually gets where it's supposed to be. And, if the calcium/vit D3 binds with the thyroid hormone, it will make that unavailable, too.

    Did you start all these suppléments one at a time? Leaving a couple of weeks inbetween? Glutathion, for example, doesn't suit everyone, it made me ill - there is a reason for that, but I forget what it is, sorry. Also pregnenolone and ginseng. Ginseng is more effective at reducing cortisol than it is in raising it.

    Are you sure you absolutely need the calcium? Is your calcium reading low? Too much calcium isn't good, and taking calcium supplements isn't good. You Don't want to take it unless aboslutely necessary.

    Did you get tested for iodine deficiency before starting it? Too much iodine is bad, too. Especially if you have Hashi's. Do you have Hashi's?

    Don't worry about B12 being over-range. Most ranges are pretty silly, anyway, and optimal is around 1000. You can't over-dose because it's water-soluble.

    The Mirtapazine might not be doing you any good, either. Have you ever tried something natural, like melatonin to help you sleep?

    You are taking vit D3 and magnesium, which is good, they work together, but they also work with zinc, boron, vit A and vit E. Have you never tried adding any of those in?

    I see that to begin with, you were dosed by your TSH. Stupid doc! A low or suppressed TSH is irrelevant. He should have dosed you by your Frees, or how you feel. But definately not the TSH!

    When you were on T3 only, did you ever try taking it all in one go at bedtime? That suits a lot of people much better than splitting it through the day. And it would also avoid contact with the other things you're taking which are probably making it unusable by your body.

    If I were you, I would try cutting out the iodine and ginseng - unless you know for a fact that they are making you feel better - and the T4, and taking my T3 all at once at bedtime. But, I would do it step by step, not all at once, starting with T3 at bedtime. But, remember, any change is going to take time to make an improvement. Also remember that I am not a doctor, this is just what I have found through experience. :)

  • sunrise can you click on the arrow next to ;follow post and edit to space out your writing to make it easier to read. thanks..x

  • Thanks bluepettals2 - I've done that now

    xxx

  • fabulous- I hope someone here can help sunrising- she is my friend and I am very worried about her

  • ...maybe the forum is quieter on a Sunday evening.... :-) x

  • yes marz wher e is everybody tonight- only you and me here!

  • ...and we are two hours ahead - so it's almost my bedtime :-)

  • oh no I shall be alone then---it 18.15 gmt here or 6.15pm

  • :-) x

  • Sunrising, so sorry to hear how bad you feel. I'm not a medic of any kind and can only quote my own situation. I have Hashimoto's and of course hypo. I am allergic to thyroxine and although hypo my weight suddenly fell off of me at the rate of 7lb a week. The Drs were baffled as they thought id suddenly gone hyper, which tests proved I hadn't. I'm now on t3 only but it took a very slow introducing it for my body to accept it, we are all different, no one size fits all in my opinion. I'm not thin any more I have to say. On test results they have to ignore t4 levels.

    Have you been checked for pernicious anaemia? It can go hand and glove with thyroid problems. I have both.

    I hope you will get some good replies and you feel somewhat better soon. X

  • Hi Mabsie

    Thanks for responding. How did you know that you were allergic to thyroxine. This could be my problem because on higher doses, I feel at my worst. I am also very, very skinny and keep losing muscle and bone all the time - I can feel it. My joints and bones are disintegrating - I can feel it.

    I find taking T3 very difficult as I get so spaced out after taking and get more exhausted and feel like I'm going to collapse all the time.

    I haven't checked for pernicious anaemia - not sure what it is - will have to Google it.

    Thank you for your well wishes x

  • I was originally told it was near impossible to be allergic to thyroxine-I have many allergies. Eventually I had a couple of days in hospital having 'challenges' of increasing amounts of thyroxine. Each time my symptoms worsened until I had an anaphylactic reaction.

    After this I was given liothyronine t3 to try and very very slowly I increased it. I stayed on one dose for a month before increasing. I'd been so hypothyroid for so long it seemed sensible to do it this way.

    I hope you find answers soon sunrising. X

  • Mabsie - thank you - what were your symptoms when on thyroxine?

    How did you increase T3 and did you feel any reactions to it when you took it. I get spacey.

    I feel totally rubbish on T4 only so maybe I am allergic - I wouldn't know how to find out if I am allergic.

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