Jump to content

suek54

Advanced Members
 View Profile  See their activity

  • Posts

    23

  • Joined

  • Last visited

  • Days Won

    1

suek54 last won the day on April 20

suek54 had the most liked content!

suek54's Achievements

Apprentice

Apprentice (3/14)

  • Collaborator Rare
  • One Month Later
  • Week One Done
  • First Post
  • Conversation Starter

Recent Badges

26

Reputation

  1. icon BelleDeJour reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  2. icon Scott Adams reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  3. suek54
    KnittyKitty, quite agree, more tests should be standard, mandatory even, but they simply are not in the UK. Younger people seem to be tested more older people. Limited funds perhaps, its not right and would be vehemently denied by the-powers-that-be, but there you are. More and more I've found that as I get older I need to do more of the detective...
  4. icon BelleDeJour reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  5. icon knitty kitty reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  6. suek54
    Hi KnittyKitty, Like Belle I have read all your info with great interest and made notes to do a bit of research. It really is a minefield isn't it? Im already on that autoimmune bandwagon you mention - vitiligo, premature ovarian failure (at 39), hypothyroidism, Addison's and now dermatitis herpetiformis. I'm stopping there, any more would just...
  7. icon Scott Adams reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  8. suek54
    Hi Belle, I saw eight different medics before the last one said she knew exactly what it was, so I understand where you are coming from there. And that's all it takes, just one medic who goes the extra mile to help you. I can only encourage you to keep querying the possibility of dermatitis herpetiformis and asking for the biopsy. If the biopsy is...
  9. icon BelleDeJour reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  10. suek54
    Oh Wow Deb, what an awful trial you've had with dermatitis herpetiformis. I just can't imagine how you have coped. You must be such a strong lady. I'm very glad to hear you have found a way through. No grain. Very interesting. Not sure exactly why it got such an extreme hold on me, top to toe - age, Addison's, lack of medical recognition - probably...
  11. suek54
    Hi Belle I too have hypothyroidism. Reading about Levothyroxine - a 100mcg tablet seems to contain 40-50 mcg iodine, daily requirement around 140-150mcg. It made me realise my intake was high and I am working to reduce it, though I'm not going low, just lower. We store iodine in our bodies and it can take a couple of weeks for the level to drop. May...
  12. icon BelleDeJour reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  13. icon Scott Adams reacted to a post in a topic: Dermatitis Herpetiformis - follow up dermatology appointment coming up
  14. suek54 started following Shaking/Tremors and Off Balance , Dermatitis Herpetiformis - follow up dermatology appointment coming up and And on a Positive Note...
  15. suek54
    Hi Belle I live in UK and can so relate to everything you say. Like you, I was absolutely smothered, top to toe. Between May and October last year I saw eight medics. Seven told me just to keep putting cream on. It was only the last one who recognised dermatitis herpetiformis. I was so low by October I was beginning to have dark thoughts as to whether...
  16. suek54
    Hi Diagnosed with dermatitis herpetiformis (skin biopsy) December 25, following 7 months of the most awful top-to-toe rash. Immediately started on 50mg Dapsone,which helped no end but couldn't put the lid on it entirely, still lots of outbreaks. Now increased to 100mg. Brilliant! Skin clear, feeling good, bloods all good. Im (an active)72 yr old with...
  17. icon Scott Adams reacted to a post in a topic: Awaiting dermatitis herpetiformis confirmation following biopsy
  18. icon Name reacted to a post in a topic: Awaiting dermatitis herpetiformis confirmation following biopsy
  19. suek54
    That's really interesting Knitty Kitty, thank you.. I had been thinking about starting a BVit supplement after my blood tests next week - my annual Addison's blood tests include B12, as pernicious anaemia can follow on from Addison's. My B12 has been steadily dropping over the past few years but still within normal range. I shall be interested to see what...
  20. suek54
    Hi Trents, Cetirizene (aka Zirtek) has been my antihistamine of choice since it became available. I personally don't get on with fexofenadine (aka Allevia), it dries me out too much, including making me constantly thirsty, which is not good with Addison's disease. However, the old fashioned Piriton has been a godsend at night to help me get to...
  21. suek54
    Many thanks for that AC. . I too have had awful hay-fever since very young and have taken antihistamine every spring and summer since then. In recent years I have changed to second generation antihistamines, which are not a problem apparently, but prior to that they were all on the 'bad' list. Now aged 72, there's not much I can do about the past, except...
  22. suek54
    Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly. I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge...
  23. suek54
    Thank you Knittykitty. That's a lot more reading to help me understand dermatitis herpetiformis. Its a steep learning curve. Im guessing you are in the US? I can definitely ask for those tests but in the UK currently the NHS is under such pressure, with such huge backlogs, I'm not sure whether I stand much chance of getting them. Still, we can but ask...
  24. suek54
    Brilliant info Rogol72, thank you. I have further derma and endo appointments at end April/beg May. I need my B12/B9 results before any supplementing as they have been on a downward trend. My brother had pernicious anemia (another autoimmune) so I need to eliminate that first. Thanks again. Sue
  25. suek54
    Hi May I ask how long you have had dermatitis herpetiformis and how long you have taken Dapsone for? All the info online seems to suggest needing Dapsone for between 1-2 years, gradually reducing thereafter. Is that your experience? Sue
  26. suek54
    Hi Rogol72 Thanks for your reply. I understand UC is pretty awful. Sympathies on that one. I mustn't take NSAIDS either. Everyone who has replied to my posts has made various suggestions to improve the joy that is dermatitis herpetiformis and I have slowly been reading about them all. Possible iodine reduction was one of them. Boosting various...
×
×
  • Create New...