Desperately ill and really need help

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.

18 Replies

  • Don't apologise, you are quite unwell and none of the doctors are able to think of a solution so you are left to try to fathom out things yourself.

    They don't know clinical symptoms or how to treat except try to reduce the TSH. They are told to prescribe nothing other than levothyroxine.

    No wonder you are desperate, we do obviously want answers as to why we are not improving.

    Has your doctor/endo tried liquid thyroxine? Have you tried tablets which are lactose-free (just in case you've a sensitivity. Details in the link below:-

    You may be sensitive to synthetic hormones. The NDT you tried was it Nature-Throid or Wpure (both by RLC labs) both hypoallergenic which can be prescribed on a named-patient basis.

    Were you on UK T3?

  • Hi Shaws

    Thanks so much for your help.

    I didn't know until a couple of days ago that there was such a thing as liquid thyroxine - is this prescribed through NHS. Do you know which levo is lacto free. I do eat a small amount of unpasteurised cheese and do not have adverse reactions that I notice.

    I have tried a variety of NDT's (Naturthroid, Armour, Erfa, Thyroid, Thyroid s) and react quite badly to them. I wish I didn't because I like the idea that they are natural.

    My T3 is prescribed through NHS. I get spacey with T3 and headachey with T4. My THS has been high for quite some time now because I just can't seem to tolerate meds (Hormones) and I'm obviously very concerned witbh severe fatigue, bone pain, joint and muscle pain etc. as well as the brain fog.

    I find it hard to differentiate between thyroid and lyme - it's horrid but I definitely know I have problems taking hormones because of the changes I feel when I try different types of hormones and different amounts.

    For some reason, I'm just not tolerating or utilising and I don't know why.

    Do you consider ferritin of 75 to be low? (13-200).

  • The details are in the link below and can be prescribed on a special order. Liquid thyroixine maybe ask your pharmacist but GP can prescribe. It may be more expensive but if you can have a trial at least that would be something.

  • Thank you Shaws, I'll ask my GP. What are the usual advantages of taking liquid thyroxine?

  • I can only surmise as I've never taken it. I believe it contains the least things that might irritate.

  • "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."

    When you went from 125mcg T4, to 50mcg T4 and 20mcg T3, did you realise that your overall dose had been reduced? T3 is roughly 3 times as potent as T4 , at least in the opinion of patients. Doctors usually say T3 is between 5 times as potent and 14 times as potent. (I saw the 14 used on a research paper I once read. My jaw dropped!)

    So, when you added T3 and reduced T4 your overall dose was reduced from 125mcg T4 to the equivalent of roughly 110mcg T4. Your TSH and your FT4/FT3 levels don't correspond with each other. Your pituitary should be producing more TSH with under the range T3 and T4. It is also possible with such low TSH that you have a problem with your hypothalamus. Look up secondary hypothyroidism (a problem with the pituitary), tertiary hypothyroidism (a problem with the hypothalamus), or central hypothyroidism (a generic name which covers both secondary and tertiary).

    While you are held hostage to your TSH level you are unlikely to get well.

    I saw your ferritin level was fairly reasonable - could be a bit better, but it isn't atrocious. However, ferritin can be raised by inflammation and give a false impression of having enough iron. Have you ever had CRP or ESR tested? They are both non-specific measures of inflammation i.e. neither will tell you where inflammation is occurring if they are positive. But if they are positive then your ferritin level may not be reliable.

    If either CRP or ESR was positive it would be better to have more information on your iron e.g. serum iron, TIBC, transferrin saturation, haemoglobin, haematocrit, red blood cell count.

    See this link for some good summary info on anaemia. Bear in mind that you might not be anaemic, I'm just making suggestions, and may be barking up completely the wrong tree. Also remember that you could have two or more kinds of anaemia, and that makes life very difficult!

    I notice you say you have Hashimoto's, and that you eat gluten-free. There are some people who feel better if they eliminate sugar from their diet. And others do well by eliminating dairy. Don't try both these things at once. If you get any benefits you won't know what helped and what didn't. Be ruthless though. If you eliminate something you have to be dedicated and not cheat.

    You may find these sites interesting :

    The author suffers from Hashi's herself. She has also written a book which gets good reviews.

  • Hi Human bean (I like the name).

    That's interesting about the potency of T3; I always though it was 4 or 5 times the potency so I get your point about being undertreated. The trouble is, I just don't seem to be able to tolerate T3 (always get spacey) and when I first tried 10 mcg of T3 as suggested by endo my head blew off.

    My TSH is currently high because I am undertreated. I tried to stop T4 and do T3 only hoping it might have a better chance of getting into the cells but I just couldn't cope on that either. It's such a mystery.

    As my TSH is currently high 20+ (ouch), does that mean my pituitary and hypothalamus is working correctly.

    How would I go about testing pituitary and hypothalamus (if doctors agree - they are tired of me and it's become a battle).

    I recently had ESR and CRP checked and they both read low (bottom of range) - that's good I hope?

    Thank you for the links.

    I have been supplementing iron mildly over the last few months because ferritin showed low some months back - could this be the main reason do you think. It's strange how I still feel so poorly and have the same problems though even with raised ferritin!!!!

    No, I don't consume sugar - no nice cakes or bics even gluten free which I don't buy anymore. Just minimal amount in very occasional fruit and maybe 2 squares of chocolate a week - what a life. I eat sweet potatoes but not many.

    So really, I'm still baffled - I just don't get it.

    Thanks again - will look at those links

  • What are you doing to treat your Lyme? My personal experience is that treating it is the key to starting your improvement. Treating your thyroid and adrenals is effectively using a bandaid to treat symptoms that simply can't be put fully under control whilst the underlying attack is still going on.

    If you aren't on Lyme treatment, PM me and i'll tell you the protocol that I am on from my practitioner in Philadelphia.

    I've no idea whereabouts in the country you are, so this may not be of help, but he's coming to the UK for the first time in 4 weeks time to run a clinic in Herefordshire.

  • Hi Rosetrees

    Thanks for your response

    I'm not sure how to pm you on this site as I am not familiar yet. Need to learn more if brain will allow.

    I'm taking Buhner herbs at the moment. I tried Cowden but I didn't appear to improve.

    I think I may recognise you from Facebook.

    I have a Skype appointment with Dr J. A. I know he is coming to UK but I'm too poorly to travel so I'm skyping next week. I'm hoping he may have some answers for me.

    I'm confused over lyme results. I had positive Elisa on four occasions and positive Western Blot only band 39 so considered negative by NHS but according to research, band 39 is the most lyme specific of all bands.

    I got tested by Armin labs and it showed chronically suppressed immune system (CD57), EBV, CMV and Coxsackie but only scored 1's on lyme panel so no active lyme. Mind you, the tick bit was over 10 years ago so immune is probably extremely stressed.

    I live in Worcestershire.

  • We probably do know each other from FB, if I can work out who you are. Dr A has his own Lyme protocol which is what I'm on and which has worked so brilliantly for me that I still can't believe it. Do let me know how you get on with your Skype appt and shame you can't get to his clinic to meet him in person.

    To PM me (or anyone else), just click on my username and then click on "message".

  • Thank you Rosetrees - I'll see if I can work out how to pm you - sounds simple but my brain isn't lol

  • You managed it!

  • Hi again, I have just realised you also posted your question yesterday and wondered if none of the replies were helpful?

  • Hi Shaws

    I very much appreciated the response yesterday but I just guessed that a Sunday was probably not a good day to write with people busy with their families and such and maybe my post got buried.

    I posted again in hope for more views because I'm struggling so much.

    Any response is very much appreciated and am very grateful

  • I hope someone can respond with helpful info.

  • Hi Ellismay

    Well, I'm in a right mess at the moment. I'll have to give you some history otherwise my current state will not make sense or appear sensible.

    I was diagnosed hypo in 2007 and started on levo and gradually levo was increased to 125 mcg which I stayed on for some time and felt I would say 90% OK. My TSH would fluctuate so on occasions GP's put me on 150mcg of levo but that would be too much, 125 not enough so then I alternated between 125 and 150 but that was too much. THS kept fluctuating.

    This went on for a couple of years and I was working at the time, physically fit but used to get headaches sometimes and a fuzzy head.

    2009 - broke a hip playing tennis and surgeons couldn't align it so I was walking in some pain and unbalanced so felt stressed from this. Continued to take levo and was still reasonably OK.

    2011 - started to feel really ill, exceptionally bad panic attacks, depression, anxiety from hell and kept running to docs for help. Given anti depressants which helped but didn't take away all symptoms so felt confused. At this time, I remembered that I had suffered really bad reflux after taking some strontium renalate (bone drugs) and my throat was red raw. I wondered if the meds had affected my guts as well as my throat. Endoscopy showed reflux, red raw throat and spincter not closing. I wonder if my immune system was damaged.?

    Since 2011, I have become increasing more poorly and now I can hardly walk or function. I found out in 2012 from private tests that I was not converting T4 very well. I didn't know much about thyroid problems until I started to research in 2012.

    I tried NDT but got very spaced out. I went to an endo and got T3 and still got spaced out.

    Over the last few years I have tried different combos so my body must be so mixed up but I'm desperate. High T4 levo dosage appears to make me feel worse but I'm confused as there is a strong possiblility I have lyme disease. However, higher doses of T4 makes me worse. I tried T3 only and suffer just as badly - really spaced and totally fatigued and the spikes are very difficult to manage.

    I'm currently taking 50 mcg of T4 levo but really don't know if it's doing anything. I'm taking 3 x 5 mcg of T3 but I know that this combimned is just not enough and I'm under treated but my body just can't handle more. I'm so frustrated.

    I take in the am:

    Before I get out of bed......50 mcg T4, 5 mcg T3

    At breakfast - one hour or so after thyroid hormones:

    1 nutri adrenal - 100 mg

    10 mg pregnenolone (new addition)

    Siberian ginseng - 10 drops

    Vit C - 250 mg food based

    Japanese Knotweed for Lyme 500 mg

    Cats Claw for lyme 500 mg

    Magnesium 200 mg

    An hour before lunch .... 5 mcg of T3

    With lunch:

    Japanese Knotweed 500 mg

    Cats Claw 500 mg

    Magnesium 200 mg

    Calcium/Vit K 300 mg

    Vit C 250 mg

    CoQ10 100 mg

    An hour before dinner ..... 5 mcg of T3

    At dinner

    Japanese Knotweed 500 mg

    Cats Claw 500 mg

    Vit C 250 mg food based which is stronger than artificial

    Magnesium 200 mg

    Sometimes Iron 40 mg

    selenium 200 mg

    Vit D 2000

    2 drops nascent iodine

    I have recently started to add in at lunchtime, a little colloidal silver for lyme and viruses and glutathione.

    Occasionally, I take artiminisin for lyme and co's and some B vits but my B12 and folate were over range on recent blood test so I'm not sure if these results are valid and of importance so I have supplemented with B's for a couple of weeks.

    My bones, joints, muscles and brain appear the worst of my symptoms but I do get heart paps sometimes (not surprisingly) and I feel that thyroid is a significant problem and don't know how much of it is lyme related and how much of it is related to the way that I walk or the additional bone drugs that I took in November 2011 (bisphosphonates - BIG mistake). I have had increasing bone pain since taking those bisphosphonates so you may see my confusion.

    Bottom line though, I still need to find out why I can't deal with thyroid hormones.

    My brand of hormones always stay the same.

    I have had MRI of head - no probs (3 years ago) and CT scan last year which didn't show anything of serious significance apart from some spine degeneration and NO FAT on body (I'm skin and bone).

    Sorry for such long post. I'm so exhausted now after writing this - I'm good for nothing but I'm desperate to find an answer.

  • Oh, and I take 2 ml of LDN at bedtime and one quarter of a 15 mg tablet of Mirtapazine to get me to sleep even though I don't like the idea of taking it.

    And I sometimes take liquid mineral drops but not often.

  • Sorry Ellismay, I keep remember things that you have asked.

    My CT scan was to look at me in general as I keep going to docs saying that I feel like I'm dying. They looked into my stomach issues too as I have colitis so the CT was general and not particularly looking at bone. The MRI was to look for the reason for headaches but nothing showed apart from a little sinus which I don't even feel.

    Not sure if this helps or not but thank you for looking into my problems

You may also like...