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Symptoms not improving

Posted , 4 users are following.

chemkate
chemkate

I have been diagnosed with vitamin D deficiency (12 ng/mol) in March 2015. My GP prescribed 20,000 IU weekly for 6 weeks, then 800 IU weekly. The 800 IU tablets did not work, so after seeking advice from another doctor I upped my intake to 5,000 IU (she recommended this high dosage as I had serious leg and arm bone aches, headaches, constant fatigue, foggy brain, tiredness despite getting at least 8 h sleep, etc.).

My blood test in November 2015 showed normal vit D levels (~42 ng/mol) but the symptoms are persisting and in fact getting worse - the pain in my legs is getting unbearable (it's as though someone is alternating between stabbing and scraping along my bones with a sharp knife/needle) and is speading to my arms - also, I could hardly walk down a set of stairs for about a week due to serious ankle pains.

My GP tried to persuade me that I might have fibromyalgia but did not test for many other things - he only looked at very unreliable TSH when I mentioned my family has a hostory of hormonal problems (I suggested it might be a thyroid problem, as I am gaining weight despite healthy eating and before the fatigue set in I was exercising regularly, and my job has me standing most of teh time anyway).

I am waiting for an endocrinologist appointment, but that's in March 2016 and my symptoms are getting worse and worse - I really need advice!

If anyone has any helpful insight, it would be greatly appreciated.

0 likes, 10 replies

10 Replies

  • Beverley_01
    Beverley_01 chemkate

    Posted

    Hi chemkate,

    Just wondering, are you being tested for fibromyalgia? There's another forum on here for chronic fatigue/me/fibromyalgia. Your symptoms overlap with those and people with these conditions (not all people) seem to have problems with vit d absorption. Also, pain, brain fog, fatigue are main issues. May be worth taking a look? Also, as you feel it could be thyroid, can you get a second opinion or ask to see a specialist?

    Hope that helps and that they get to the bottom of this soon for you.

    Best wishes

    Beverley

    • chemkate
      chemkate Beverley_01

      Posted

      Hi Beverly,

      thank you for your relpy.

      My GP suggested the fibromyalgia diagnosis, but many symptoms do not apply to me - e.g. my aches do not get worse on applying pressure to the pain points, etc.

      Moreover, if I understand it correctly, one cannot really be tested for fibromyalgia - you are diagnosed if everything else is ruled out, so I guess one could call fibromyalgia a symptom with an unknown underlying cause rather than a disease in itself. (I might be wrong, but making some enquiries and doing some research lead me to this conclusion.)

      I am indeed waiting for an endocrinologist (specialist) appointment in March (as I've written above), but it seems a very long time away...

      Kind regards,

      Kate

    • Beverley_01
      Beverley_01 chemkate

      Posted

      Hi Kate,

      Opps! Yes you are seeing an endocrinologist in March. Hope that yr appointment is useful to you. I think there are alot of conditions that seem linked together with similar symptoms .

      I know it seems a long way away yr appointment but, I feel January just disappeared and time sometimes just goes so quickly?

      Beverley

    • chemkate
      chemkate Beverley_01

      Posted

      Hi Beverley,

      time does tend to go by quickly, but unfortunately it slows down to a snail's pace when you're in pain...

      Katarina

    • Beverley_01
      Beverley_01 chemkate

      Posted

      Hi Katrina,

      Yes, time Is a strange thing. I guess I'm not in a pain cycle at the moment but was a couple of weeks ago. My days, weeks seem to disappear but, I have cfs/me. I too have no energy to cook, go out, get dressed etc. When I'm in pain too, I just muddle on with the new stuff. Its horrendous, I know and was in agony for months at the beginning of my 'journey'. I hope you get the specialist help with your condition that gets to your being pain free and fatigue free sooner rather than later.

      Best wishes

      Beverley

  • Jaybelle
    Jaybelle chemkate

    Posted

    Sorry you're feeling so bad, Chemkate. 

    The pain of osteomalacia can take many months to resolve - it took me over seven months just to feel I'd 'turned the corner' and almost a year on I still have fatigue and some pain.

    Pofessor Michael Holick, the leading expert on all things vitamin D, suggests that osteomalacia can take a year to resolve if longstanding. If you're still feeling awful you can ask to be examined for other issues such as arthritis, etc. I had a full thyroid workup and am now on thyroxine due to anti-thyroid antibodies, so that could be a good avenue to explore. The thyroxine definitely helped my pain and fatigue somewhat.   

    I too was given a diagnosis of fibromyalgia, which I now completely reject as I see it as a dustbin diagnosis of a condition with no identifiable markers and no cure. I have no confidence in the notion of 'trigger points' because vitamin D deficiency osteomalacia gives you tender spots on the bones around the joints and ribs anyway, meaning it is impossible to distinguish 'fibromyalgia' from osteomalacia. 

    My advice, for what it is worth, is to keep trucking. Look after yourself and keep asking for answers. If you find them, let me know because I'm still struggling too!

    All best wishes.

    :-)

    • chemkate
      chemkate Jaybelle

      Posted

      Hi Jaybelle,

      thank you for your response.

      I am aware of the long process that is resolving osteomalacia, but what worries me that my symptoms are getting worse and not better (even if they were improving at a slower pace, I could 'accept' that).

      Hopefully my appointment with the endocrinologist will give some insight into my problems. I have not been examined for anything else - I have changed my GP several times and even the 'best one' has done nothing except for giving a rather throwaway diagnosis of fibromyalgia (which, as you say, is a load of nonsense).

      I wish you success in resolving your own problems.

      Kind regards,

      Kate

  • Fireid13
    Fireid13 chemkate

    Posted

    I take from your D deficiency your other vit/min are within normal range. Iron, b-12, folate? Ibs is also a catch all diagnosis.
    • chemkate
      chemkate Fireid13

      Posted

      Hi,

      although I have been trying to get my GP to do a more indepth blood analysis, I have not been successful - hence I don't know my iron, B12 or folate values...

      He did do a full blood count and part of the results were abnormal, but his response was that it is 'statistically normal to get some outliers'.

      I think it is obvious why my endocrinologist appointment cannot come soon enough.

      Kate

    • Fireid13
      Fireid13 chemkate

      Posted

      You got it, be more proactive, i get copies of all my labs and tests. No way should he suspect and only order vitamine D and not do all. Get a new doc or ask him why he didnt look for other deficiencies. Look at side effects for all deficiencies and compare.
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