anyone have hypothyroidism and pmle and sle

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This topic contains 12 replies, has 3 voices, and was last updated by  lc 2 days, 4 hours ago.

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  • #43910

    lc
    Participant

    Hi All,
    over the past 4-5 years at the begining of the year when the sun comes out I have been coming out in a itchy/ burning rash. went to drs again this year and was dr diagnosed me with pmle polymorphic light eruption. but have raised blood platelets for past year thyroid levels bouncing all over the place to high to low.Fatigue and un explained pain mainly feet but moves around. had no end of blood tests and dr not quite sure what is going on. the other day i was talking to a woman who works with my wife and she had exactly same problem and was diagnosed with systematic lupus eruption sle. went back to drs and told them about this woman and they went right through my long list of blood tests and finally said to me strange we havent tested you for that yet normally it would be one of the first. and said yes your probably right.but it is hard to identify. next bloods test i have we will add this to be requested, which is in a weeks time. I hope i haven’t got it. so have to wait and see. DRS you go to see them to diagnose yourself sometimes,normally they are pretty good. and said we have been keeping an eye on you , hence the phone calls and bloods.and said sometimes you can get another autoimmune disease if you already one. just wondering if anyone else has had same problem? so i’m not very happy at moment waiting. got enough to deal with, with constant pain let alone something else wrong. oh well what will be will be, cant change it.just feels like i was born with all the rotten left overs. LOL gotta laugh just carry on. Take care and best wishes to you all. Lee

    #43911

    Jan Sadler
    Keymaster

    Hi Lee, That’s a lot to take on board, isn’t it. As far as I know I don’t have any of those conditions, though I do have a goitre on my thyroid, which seems stable at the moment.

    I hope your result is clear next week, so you have something definite to work with. Any illness or condition is so much easier to manage if it has a name.

    Good luck, Lee, and keep in touch, won’t you. 🙂

    Jan at PainSupport

    #43912

    AnnieD
    Participant

    Hi Lee – sorry to hear about your current plight, and wish you all the best for next week! I began getting red raw itchy hot areas over my calves/forearms and was tested for lupus, but got the all clear, I was advised to see a dermatologist, I didn’t as I thought I’ve got enough on my plate. I feel like mine are either caused by chemical sensitivity, and or when my pain’s bad, it makes my skin super sensitive. I did used to suffer with psoriasis, but sometimes the patches stop itching despite remaining hot red rawness, so I do know it’s not that, but I get them randomly throughout the year and they take an awful long time to go away, and even a shower makes them worse. Sometimes I think pain makes your body just go into crazy overdrive mode…..
    So I do wish you the best of luck in getting a diagnosis!!! take care & let us know how you get on…. best wishes AnnieD

    #43913

    lc
    Participant

    Hi Jan, AnnieD, Thank you for your replies, Dr told me its a lot more common in women than men something like 1 in 1000 in men. reckon i must have a y gene in me. lol. just seems strange after all these years being out in the sun working out in it and holidays to suddenly being allergic to the uva/uvb light. weird one. As you say Jan I need to know what it is so I know how to manage it. at moment trying to restrict myself from being out in the sun too long by covering up smothering in sun lotion but still come out in rash. keeping in the shade alot thats the only time i take my shirt off.or indoors in this hot weather. which i find hard as i am an outdoor person. well i will keep you informed just hoping its not lupus. been tested to see if it was one of the meds i take but it isn’t that causing it. take care and best wishes to you both.Lee

    #43914

    AnnieD
    Participant

    Hi Lee – my GP said they’re seeing a lot of adults 30s to 60s develop late on-set allergies. It’s bizarre, Hey plus check you possibly being a rare specimen in the male population! Fingers crossed you’re not though, with everything else you’ve got going on. As I know what you mean about being an outdoors person, it makes you feel so much better being out there. take it easy and all the best next week – we’ll think lots of positive thoughts for you – AnnieD

    #44019

    lc
    Participant

    Hi All , quick update, after all this time Over past year with thombocythemia I have pmle but not lupus thank god but with raised platlets they thought cancer, lucky i have not got that either so got to go and see a specialist about blood,to find out why i have thrombocythemia. and also a skin specialist to help me with the pmle. so nothing serious. blinking drs get you worked up over nothing sometimes.for which i told them to stop causing me unnecessary anxiety, they just came back with at least we are keeping an eye and looking after you ,which is fair dues. still got to have blood every 3 month now rather than 6 – 8 weeks. arms are getting sore now. sure i will get some answers soon, i hope.thyroid still bouncing about a bit, just more waiting for appointments with specialists.oh yes dr said about me taking vit. D during winter months just wondering if any of you take it and if it makes a differance. as i’m a bit sceptical. I hope you are all keeping well and best wishes and take care. Lee

    #44025

    AnnieD
    Participant

    Hi Lee – I think sometimes doctors don’t realise how they come across, and can I say you’re very lucky that you have such a caring one – I wish I did! Holy moly, glad to hear it’s not lupus, although sorry to hear about your other condition – and hope you can get some answers soon.
    Actually I read an article a few months ago about vitamin D, on boosting your immune system and warding off colds in winter,and my go to for finding out what people think is also reading reviews on Amazon, and people did mention how it helped various skin conditions. I am a big believer natural products are the best solutions for skin after having suffered with psoriasis. My husband had a rare form of eczema and they wanted him to trial this cancer drug with horrendous side effects, I wouldn’t let him, and as I’m a honey monster, honey cleared it up when nothing else had.
    All the best with your upcoming appointments and keep us updated how you’re getting on!! take care AnnieD xx

    #44029

    lc
    Participant

    Hi AnnieD, thanks I to like honey either in porridge and sometimes on toast but not every day think I might try the vit.D tried omega 3 once for about a year but with no difference what so ever as Paul was talking about on another chat. take care and best wishes.Lee

    #44031

    AnnieD
    Participant

    Lee – keep us updated about the vitamin D! Yes I found an article on omega 3 – but you seem to have to take it in very high dosages, that’s the issue I have with natural products, is what’s the exact dosage you’re actually meant to take, has your doctor recommended a specific dosage? Just curious as I’m looking to order next month to avoid the flu, and if it helps with my crazy occasional random rashes – even better! All the best!!

    #44032

    lc
    Participant

    AnnieD, No just recommended it guess what it says on the bottle. all the best . Lee

    #44033

    lc
    Participant

    Hi Forgot only take it from end of sept. till about april.

    #44034

    AnnieD
    Participant

    Hi Lee – thanks a million for that! I think I’ll try 3000iu and flu/cold free here I come – I hope!! All the best with it helping you too!!

    #44236

    lc
    Participant

    Hi All, Just needed to get this off my chest really, all these problems with bloods and skin, had a phone call today from dr and they have looked right into it now, and got to have another blood test in 2 months, as thyroid levels are a bit raised but they think it’s something to do with my pitury gland which feeds thyroid that’s causing all these problems. so another 2 month wait, then if still the same they are going to refer me to a hormone specialist. finally something getting done. it must be hard as its one of those things that hard to know exactly whats going on. surprising what a tiny little thing in your throat and at front of brain can cause so much disruption to the rest of your body. anyway feel better for getting that out. take care all and best wishes hope you all have a less pain day.Lee

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