Lots of health issues - can anyone help?

I was diagnosed with Fibromyalgia in 2002 and HypoT in 2007. Since then I have had that many things wrong with me that I am thinking of donating a bench to the doctors' surgery with my name on it! I have very poor balance and can't close my eyes and walk in a line without falling over, I have been diagnosed with ideopathic small fibre neuropathy, but the treatments they gave me for that either didn't work or the side effects were too severe to have a life. Recently - in the last 4 months - I have had laryngitis twice, urticaria, been diagnosed with the skin condition lichen planus, developed a lump at the front of my throat (now gone) then facial shingles. I have had an unbelievable itchy scalp for 12 months - so bad I nearly shaved my hair off the other night. Lots of headaches and migraines, vision has worsened but not do to with shingles, I bruise very easily and get terrible heat rushes. Phew - I think that's about it!! I'm off to the GP yet again next week - it's getting like Groundhog day for him - but if anyone has ANY ideas I would be so grateful. I know these symptoms may not be related but I feel there is something really wrong here. Thank you so much for taking the time to read my ramblings x x P.S. I am going to ask my doc to test for Hughes Syndrome.

24 Replies

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  • Itchy scalp is a hypo thing I think. Have you had B12 and folate tested? The balance issue you describe is a common B12 deficiency symptom, and the lichen planus if I cast my mind back I think I discussed this with someone else on this forum once and we found a link with low folate...

  • My b12 was in the lower third so I now have b12 injections. My folate was just under the reference range so I supplemented with folic Acid and it went back up. Thank you very much for your suggestions. I've just had a load more bloods done and my TSH was suppressed and T4 at high end of range. Doc tried to lower dose but I resisted the change and am still on 100mcg daily. Thanks again x x

  • Sounds to me like you need more frequent injections. Are you on 3 monthly? The BNF says that if you have neuro involvement you can have shots every other day until no further improvement. Most docs ignore this part. Balance issues are a neuro symptom. Also you need a regular intake of folic acid as this is important to properly utilise the B12.

  • Thank you for that info, I didn't know that so I'll ask the doc at my visit next week. Ironically although my folate came back low and outside range, it was only when I pointed it out to my gp, as a consultant had ordered the test, that he said I should take folic acid, otherwise nothing would have been done. I despair sometimes that I have to be so pro active in my health care and not be able to rely on the docs

  • I hope someone will correct me if I am wrong. I believe that taking folic acid can mask problems with B12. This is a link re the importance of B12 and the GP's are very casual about this vitamin which should be towards the upper level.

    patrickholford.com/index.ph...

  • I really had to push for b12 injections and

    my 1st neurologist recommended them. My 2nd neuro said my results were fine until the trainee registrar pointed out that the ranges had changed! I really despair quite often.

  • Before I was diagnosed with a thyroid gland problem (not diagnosed by the medical profession) I would never, ever have thought that I would have to research so much in order to get well and so many vitamins/minerals are interconnected.

  • That's only if you take it without B12. If you're on B12 injections or supplements having a good level of folate is very important, as well as iron.

  • My mother had pernicious anaemia and had injections for

    more than 20 years plus folic acid. Her GP then told her she needed no more injections as her B12 was fine but to continue with folic acid.

    My mother and the family were completely unaware of the consequences of this advice (GP was trusted implicitly and was her doctor for around 30 years).

    The consequences of this advice was - premature death.

  • That's terrible, it's very common for seniors to have their injections stopped for no apparent reason, and the result is often dementia and death. One day the full scale of this scandal will come out. I have given my husband strict instructions to never let anyone stop mine! He's completely on board with this, having seen the difference it's made to my health.

  • Hi Maggiet, doctors can be very resistant to more frequent injections, mine was fine with it but I'm sadly in a minority. I would urge you to go in armed with evidence that it is OK. Are you a member of the PAS? I'll link you to the forum which will give you some idea what people go through when they don't get the proper treatment:

    pernicious-anaemia-society....

    And this is a link to prescribing instructions for hydroxocobalamin, which clearly states injections every other day with neuro symptoms:

    evidence.nhs.uk/formulary/b...

    If your folate is below range your doctor should really be prescribing you 5mg folic acid.

    H x

  • Thank you so much for the advice and links. What I do without you all?! I'm planning on seeing gp this week. I have written everything out so nothing gets forgotten and will print off the info you have given me. I have to hold on to the hope that my life could be better healthwise otherwise I'll feel done for!

  • Dry scalp can be a B12 thing too. If it's dry it tends to be itchy.

  • Thank you Carolyn. It's not just the itchiness. In some places I get raised red bumps - like blisters - which are very sore then go mega itchy.

  • Psoriasis?

  • Just been to the docs and he said dermatitis and have been given some different shampoo. Also am going to be referred to a rheumatologist for all my aches and pains.

  • Hope it works for you.x

  • The doc has just checked it out and thinks it's dermatitis - yuk! Been prescribed different shampoo

  • Have you been tested for coeliac? Deficiencies and an itchy skin rash called dermatitis herpetiformis are symptoms.

  • I have had 3 different tests for coeliac disease over the last 6 years and each one comes back negative - thankfully :-)

  • Yes, it definitely isn't a diagnosis anyone would want. :-) Have they been doing blood tests for coeliac? Has anyone had a look at that rash in conjunction with the coeliac suspicion? I just find my ears pricking up if they have a strong enough suspicion to keep testing you.

  • To be honest, I think they were just testing me for everything under the sun as they don't know what's wrong.. And yes they were all blood tests

  • Did they agree to more frequent B12 injections?

  • He wants to deal with one thing at a time, so suggested the rheumatologist first and then take it from there. I understand his way of thinking because if I get too many treatments at once, they won't know what ti is that made me feel better - if I ever do, that is. Very interesting link that you sent me, though and I will certainly use that information in future, thank you

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