Just diagnosed with Lupus

please can I ask your advice. I have had hypothyroidism for at least 7 years and recently had a bad TSH result with auto immune indicators! I had an emergency referral with a rheumotologist yesterday who diagnosed me with lupus, gave me six weeks of steroids, a leaflet on lupus and one on hydrachlordine (if that's spelt right). It's true that I have constant joint/muscle pain and terrible fatigue but I've never had any joint swelling, skin rashes or any noticeable reaction to sunlight.

I'm taking 20mg of steroids (day 2), and my mind seems more alert, but my heart is racing and my pain is no better.

If I'm totally honest I'm scared, confused and not sure this is a correct diagnoses! No one has addressed the issue of why my TSH levels are 17.1.

Can anyone offer me some insight?

Thanks in advance.

Zoeblu

8 Replies

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  • Not all Lupus people have the same problems.

    Contact Lupus U/K and they will supply you with all the leaflets you will need.

    What we all have is the Loneliness,fatigue,joint pains.

    hope this helps

  • Hi

    Like you when I was diagnosed I was put on medication and just handed a leaflet. Although I certainly cannot fault my doctor for getting it diagnosed early or the consultant I am seeing. I recently sent for a dvd and booklet from lupus UK which only cost around £2 and it is quite enlightening and I found it helpful. I know maybe I am one of the lucky ones because other than fatigue, muscle pain and some hair loss (the thing I found most upsetting) and am trying to be a glass half full kind of person as I know there are a lot of people far worse off than me.

  • Are you sure this is the TSH level not the T4? if TSH did you have to cut down your Thyroxine? First call for me would be back to your GP for an in depth chat. I also have had auto immune thyroid for about 9 years but was diagnosed only last year with Lupus. Did the Gp do ANA tests? Ask for full explanations. Docs seem notoriously bad at telling us all we need to know. Good luck

  • Have you HASHIMOTO'S?

  • some usefull web sites to help you get info on Lupus lupusuk.org.uk/ - the charity that has loads of good info, and there is probably a support group near you

    thelupussite.com/forum/inde... - for good message boards and its related page for info - thelupussite.com/

  • Hi Zoeblu

    I too have hypothyroidism (17 years now) my TSH levels have remained pretty consistent. If you had this done as your GP's I would go back and ask questions including having a re-test. I was diagnosed with lupus & fibro 3 years ago and again was casually handed a couple of leaflets which were not that helpful. The links the other have suggested are a good idea. I didn't have skin rashes initially but I do now. Everyone gets different symptoms. You could always ask for another referral if you are unhappy. Good luck and always come back and chat.

  • Hi All

    Thanks for responses. I've been back to GP and have an increase in thyroxine and proper testing for Hastmotos, which I've never had before.

    She also explained in a much clearer way why Lupus was diagnosed. Apparently I have both double stranded DNA and anti nuclear antibodies(think that's right). So now I have get my thyroid under control and understand this Lupus - then it can learn to live with me rather than me live with it!

    Can anyone recommend any good books on exercising with lupus or any good dietary controls? I will not let my children's childhoods pass while I sleep on the sofa!

    Any tips on getting nag keeping this in remission would be gratefully and whole heartedly received.

    Zoeblu

  • Hi there Zoeblu.... I like your positive attitude! I used to be a Med Sec for over 5 years and another 5 in Pharmacy. After just a couple of days (or even a week) it is difficult to assess whether a particular drug/steroid is working well - maybe your GP mentioned this? Give it a month at least. Turmeric capsules help (available from herbalists).

    I'm wondering now whether there is a link with Hypothyroidism and Lupus, because I've had it for over 15 years and yet was only diagnosed with SLE about 2 years ago.

    Unfortunately - unlike some things that affect our bodies (like the amount of UV we allow on our skin and eyes) - I have found that I have little control over the symptoms as yet...and just have to "wait it out" when the pain or the fatigue are really debilitating. The only wise advice, which you will see repeated by other Lupies, is to "pace" yourself - and conserve energy wherever you can, especially if you have a special event coming up the following day.

    The worst time for me is first thing after waking up (asleep longer than 3 hrs horizontal) - so if I have to do something important early in the morning - then I sleep in the afternoon and only "cat-nap" overnight, so that I'm reasonably mobile the morning after. This doesn't ALWAYS work - because a "Flare" can be constant for as much as 3-4 days. It certainly makes me thankful for the "well days" now.....

    Your Doc may have suggested you write a diary - just brief notes on which parts are troublesome and when.....for instance, I give my headaches/fatigue scores out of 10. (Comparing morning and eve) Time of going to sleep may be revealing too...insomnia is something a lot of us live with!

    Breathing's a good exercise....... ....

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