1. Community
  2. Heart Health
  3. Autoimmune Disorders

advice please, I've had enough now!

Posted , 5 users are following.

catalonia13
catalonia13

Morning, I wonder if anyone might be able to give some advice please, I now have shingles again, this more than a dozen times over the last 2 years in exactly the same place, I even have Acilovir on repeat prescription for it but I've had enough now and want my GP to refer me to someone who might investigate it, who would that person be, what specialist and can I demand that it is investigated?

I have other auto-immune issues (hyperthyroid, have had thyroid eye disease, low Vit D, am IgA deficient,  Coeliac (diagnosed Feb 16) and when tested my ESR is usually raised) oh and I've had to take 400mg of iron for the past 12/15 years but last November my iron levels were too high and I was told to stop taking them (having previously been told I'd have to take it for life as my body will not store iron) and a blood test Weds confirmed the level is still too high but the GP put "no further action"  - tbh, they just don't seem to want to do anything sad

My main symptoms, extreme fatigue/lethergy have been going on for over 5 years now, I've been signed off sick since Sept. 2014, I want to get  better but it just goes on an on. I got referred to an ME specialist last July (she was brilliant) and one of her suggestions was to see an Immunologist but it's not happening.    

0 likes, 6 replies

6 Replies

  • catalonia13
    catalonia13

    Posted

    correction, I'm HypOthyroid, not hyper! on 75mg Levothyroxine pd
  • margaret22116
    margaret22116 catalonia13

    Posted

    hi this could be auto immune related especially the low vitamin d and the raised esr. I woud ask for an appointment with an immunologist. If they refuse, complain and demand a referral. They have no right to refuse you. You must complain to your practice manager. Especially when you have been advised by another specialist to see someone in immunology. 

    I got my diagnosis through and immunologist. Best thing I ever did, completely changed my life. I now have great treatment and am pretty much symptom free. 

    • catalonia13
      catalonia13 margaret22116

      Posted

      thanks for your reply Margartet, my GP has fnally agreed to send me to an Immunologist in Cambridge smile

      very glad to hear that seeing one helped you, I'm not expecting a miricle cure, or even a diagnosis to be honetst, just to see the one person who understands and deals with the immune system would be good!  do you mind me asking what your diagnosis was and what has helped with it please? 

    • catalonia13
      catalonia13 margaret22116

      Posted

      I should add, I had swabs taken from the blisters, my GP informs me it is Shingles, even when I questioned it as I'm sitting there looking at the lab results which clearly state HSV type 2 - postitive, that is NOT Shingles !!

    • margaret22116
      margaret22116 catalonia13

      Posted

      Sure I have Behcet's syndrome....a type of vasculitis of which there are several. 

      I see a lovely doc in Cambridge. David Jayne....specialist in vasculitis at Addenbrooke's hospital. If you are near there go see him. He is brilliant. I have particular sort of neuro symptoms. So I am treated with Interferon and Mycophenolate. So under control now. Was symptom free for almost 3 years. x

  • margaret22116
    margaret22116 catalonia13

    Posted

    god yes,....so much misdiagnosis in this area. As a matter of interest I did get shingles from time to time....when you have a compromised immune system that can happen. Very painful. If you have blisters in particular areas then it swings to Behcet's disease as a big possibility. x

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.