Help! I've only been able to walk 10 paces before my legs pack in for 10 months

Been on lethyroxine since 2008 but gp kept me on just 25mg & didn't inform me when my TSH was 4.92 in Dec 2009 that there was anything wrong with thyroid, despite not being able to walk far from Sept 2009 & having to use a wheelchair outside. I have lots of symptoms of being undertreated and a history of having had fibromyalgia. I have been put on a mental illness ward twice & diagnosed with having schizoaffective disorder, which through your excellent website links I have found out can also be caused by hypothyroidism. At present even though now on 50mg I am still very ill. If I walk more than 10 paces my legs get exhausted & take weeks/months to recover, also my arms are affected & ache from just holding a phone. I catch viruses to the nervous system constantly. I have a very low temperature of 34.9 & I have had the Epstein Barr virus recently amoung many other things; which I am being treated for by a wonderful Homeopathic Dr that I have seen for 10 years. She is getting me some Armour thyroid, but its really hard to get hold of & is taking ages, (obviously I will have to pay for this). My ex GP put in his referral letter, when I asked to see an Endocrinologist that having been on the internet his opininion wasn't good enough and that having a history of psychotic depression I thought there was something wrong with my thyroid as I was still feeling a bit tired & that my TSH was 2.37 on 17.6.10 I'm worried the endo will think I'm imagining things and delay or not give me an appointment. Where its strange with me is that I don't feel tired in my head during the day & although I've got no get up and go in the mornings I have no problems staying awake, which isn't like other sufferers I've read about. Any ideas about what could be wrong with me? They've ruled out Neurological problems & ME. Could it be my adrenals or pituitary gland causing me to feel so bad & catching so many viruses? What tests should the Endo do? Thanking you for the excellent website hope you can help.

5 Replies

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  • Blue,

    I can't walk on by and not respond to your post.

    You have a very dififcult situation: how on earth can you decide which symptoms are due to thyroid levels and which to the other causes?

    Are you under a psychiatrist? From what I have heard some psychiatrists have more understanding of thyroid hormones (at least on the brain/mind side) than many other specialties.

    Do you have (or can you get hold of) any more test results? If so, please post them - including reference ranges if you can - and those here may be able to be more helpful than I have been so far.

    All the best

    Rod

  • I do see a psycologist & acpn none of them have ever told me of the link between mental health & thyroid. I had what I now know was a thyroid attack in august 2007 where I had halluncinations and terrible cramping pains in the chest ,Black outs , falling over and talking incoherently.Then I was taken into hospital on a mental ward because no one could explain my symptoms I evolved a whole mythology around what was happening to me. It's only through diana holmes book that I realised what had happened to me. It was during a bone dencity test because of the respiridone I'm on months later that they discovered I was first hyper then hypo thyroid. I am considered stable mentally just get bit down because of all physical problems. My last results were 5.1.10 tsh 4.92 ft 4 17.4 where upper normal range 21.5 10.5.10 tsh 2.37, 17.6.10 tsh still 2.37 despite being on increased dose of 50mg ft 4 19.5 obviously hoping endo will do more tests when I eventually get to see them. Thanks foryour concern Rod.

  • Blue,

    I can do little better than point out that, in order to feel well, many patients need to have TSH near or below the bottom of the reference range. And free T4 towards the top of (or even slightly above) the reference range.

    (I suspect that most psychologists have relatively little knowledge of thyroid, and only some psychiatrists would actually appreciate its significance. I mentioned it on the off chance.)

    The fact that you don't have the same patterns of tiredness as others report doesn't surprise me. The hypo in my life has always defied the standard descriptions in lots of ways, though there is no doubt at all about her hypothyroid status.

    Do keep coming back and telling us how things are going.

    Rod

  • Blue, we are all so different so please don't think that your symptom is unheard of just because fellow hypo's are not the same.

    Your TSH could be lower, under 1 ideally.

    It really isn't helpful for your GP to make derogatry comments in his referral letter as the Endo may jump to assumptions.

    I would tell you GP that there is nothing wrong with you taking an interest in your health and trying to find answers.

    I too have been unable to walk far (improving now though) and have to use a walking stick and mobility scooter.

    Have you ever had your B12 and Vit D tested?

    Have you had your folate and ferritin tested? When you have your TSH tested do you have your free t4 tested too? if so please let us know the lab range, ideally your free t4 would be at the top of the range, or even just above.

    NHS Doctors and Endos only recognise addison's or cushing's disease, not adrenal fatigue unfortunately.

  • Hi Blue, I remember not being able to dry my hair or walk up the stairs because of the pain in my arms and legs!

    What we find at Thyroid UK is that people with ME/CFS/Epstein Barr are often slightly different in that they don't tend to put on weight and they can't sleep at night. This, in our experience, is often due to cortisol and dhea levels. Cortisol should be high in the morning and low at night (so that you can sleep) but with some people the levels are either very low or they are turned upside down ie so that you can't get up in the mornings and can't get to sleep at night. This is why we suggest doing an adrenal saliva test.

    Many people don't feel better until their TSH is way down the range and the FT4 is way up the range - sometimes even a bit outside of the range. See the Pulse article in our news section on the main website.

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