Newbie to this forum

Hi ladies

I was diagnosed with an OA thyroid at 18 and at 30 they took it out with my parathyroid glands and I ended up underactive. I am on thyroxine 125g and alfacalcidol 0.25mg for another 15 years. I am also type 2 diabetes on metformin and have High BP. I was diagnosed 18 months ago with zero negative rheumatoid arthritis but unfortunately am allergic to all the group of medications to slow this down like sulfadezine(thinks that's the name) so I had 5 courses of steroids after every new tablet reaction

Now the outcome is I

am run down, get recurring thrush (everywhere) bone dry mouth eyes and ladies area and my GP is not helping.

Also I have not been given any solution To my arthritis.

My bloods have been done recently but I am 4 weeks for routine results

Any advice ladies xx

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10 Replies

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  • Not the best person to help with some of the stuff but if you post your thyroid blood test results here, you will get advice on whether the thyroid treatment is optimal or not.

    In regards to thrush, obviously the normal advice applies - natural yoghurt etc.

    I thought I would reply as my dad actually once got thrush literally everywhere and could not get rid of it for two years and yours sounds like a bad case too and it must be frustrating. In the end, the only way he could finally get rid of it was by removing all yeast and sugar from his diet until it finally died off - beer/bread etc.

    High Blood pressure obviously coincides with diabeties and use of steroids, you could look at the glycemic index of foods and try to lower your sugar level spikes with a change of diet. New potatoes instead of jacket/roast/chips, basmati brown or wild rice instead of others etc etc. My sugar levels were all over the place and they were literally about to diagnose me but I gave up Gluten and my sugar levels became stable and systemic inflammation was also reduced so may help to relieve the RA symptoms. Giving up gluten (lots of yeasty products lol) may also help your other problem so might be worth a try for a while and see if you get any improvements in your health.

    Hope it gets better soon :-)

  • Thank you for your helpful feedback x

  • I can't help wondering if some of your symptoms are related to Sjogrens Syndrome.

    I have hypothyroidism 27 yrs and diagnosed sjogrens a year ago (though was told been showing in my blood tests for 10 yrs!).

    Your very 'dry' symptoms are what sjogrens patients suffer with.

    Sjogrens is another, often misunderstood, neglected in testing and diagnosing: and can take years before a diagnosis is given.

    Good luck. Hope you feel better soon.

  • P.S., I suffer numerous intolerances to meds too. That is very frustrating.

    I take advice here and benefit from gluten free food.

  • Just quickly looked up Sjogrens syndrome and it sounds a possibility. Is that also a related autoimmune disorder and how do you cope with It? Given that the only medication that they seem to offer is also RA drug that I am allergic to is somewhat problematic!

    Thanks for your help xx

  • Yes, sjogrens is a related autoimmune disease but it's a hard one to get a diagnosis for. I used to have very dry eyes and mouth too and it was a real pain as used to have to sip something continuously and my eyes were always irritated - if it got unbearable, I would use eye drops or just salt water. I had a slightly different issue in the other department but never really got thrush :-/ I no longer have these issues though.

  • Thank you

    Can I ask what meds your on for it?

  • It literally went away after going GF. I don't think there are any particular meds for it which is why i didn't bother chasing a diagnosis for it anyway - I think they just give you stuff to replace what would be there or relieve the symptoms - like eye drops. Might be worth checking if they have anything to give you that's longer lasting though so not such a pain. Haven't looked at it for a while so not sure if anything else available now? I remember steroids being mentioned but they have a very bad effect on my body so would never have considered.

    Oh, just remembered I used to chew sugar free gum all the time to help not become so dry and literally constantly sip liquid :-)

  • Hi Yvonne6516

    I took hydroxychloriquine for 4 months. Unfortunately, I suffered flu type symptoms. Self help care such as paracetamol, honey and lemon didn't stop me having to visit GP on both occasions. She diagnosed chest, ear and sinus infections requiring antibiotics. Each episode took a month to recover. Even then, the hospital phoned to say I needed more blood tests as my neutrophils were low as were my sodium levels.

    I decided to stop the hydroxychloriquine because, like you, I have become quite intolerant to many pharmaceutical drugs. I must emphasise that many other people do very well on hydroxychloriquine.

    Sjogrens is often described as the poor relation to RA as research funding and awareness is so much less. This impacts on very few people (Doctors included), actually understanding the implications that sjogrens causes to health decline. As you can imagine then, it becomes very difficult to get a good treatment plan, and to maintain healthy relationships.

    As another invisible illness, sjogrens causes sufferers to experience dismissive attitudes and/or the mistaken belief that sjogrens equals dry eyes and dry mouth. It is often much more! I am told, within the next 10 yrs there will be much more awareness.

    When I was first diagnosed, I had never heard the term. I struggled with isolation, misunderstanding and lack of empathy. I was feeling so very unwell, my thyroid went haywire, first time since diagnosed hypothyroidism 27 yrs ago. I had always managed well on levothyroxine.

    My family, friends and GP, appeared to think my symptoms were ' all in my head'. My dermatologist, looking after my horrific skin rashes, sent off a blood test. I got chemical testing, then found to have significant reactions to some chemicals. And, she referred me to a rheumatologist who diagnosed sjogrens. Sjogrens had been in my blood for 10 yrs, I had never been told. Rheumatologist sent me for bloods and other tests.

    Isolated, unwell, I began googling. I was so relieved to find HU. Some link led me to BSSA (British Sjogren Society Association). Like HU, they have been such a support. In fact, today I am attending my 3rd group support meeting with members BSSA.

    BSSA have a helpline. If you want more information, just ask.

    You may or you may not have sjogrens. It is another autoimmune disease. Gluten free, pacing myself, HU, BSSA, getting referral to specialist hospital, sjogrens friends, reading books have all helped me so much.

    Most importantly, I feel safer being understood by medical professionals who know what they are dealing with. Just this week, they sent me for a neck scan. I am told I no longer have a thyroid. Apple, it has shrivelled up! Though, my saliva glands appear ok. I'm sure they will help me deal with making sure I stay as well as I can.

    And, yes, I do sip a lot of water! Use eye drops, saliva mouth spray, silk lubricant, and take codeine 8/500 for pain, as I tolerate these products.

    BSSA meetings have helped put my marriage back on track. My husband attends the meetings. At last, he is able to understand an illness that I suffer with, but had no understanding of either.

    Good luck Yvonne, hope you feel better soon.

  • Thank you for all this information it is very helpful to see that I am not the only one with multiple conditions/symptoms. In regards to hydroxychloriquine I took an immediate allergic reaction to it with hives, rash all over the body and my face was burning. The same went for all the similar meds they tried. Then I was left with no treatment for my RA.

    I can only get an appointment with my GP on one topica.d wait topic and is 4-6 week wait. Do I have written to him with all my my conditions and symptoms and asked him to look at them for my next appointment at the end of May.

    I am sorry to hear you have such a hard time of it, and I hope things get better for you. I will also look at the HAS A meetings youate talking about xx

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