Hypothyroidism and lupus

Hi, ive been treated for hypothyroidism for 20 years and rhumatoid arthritis for about the same maybe longer. My doctor put all my symptoms down to one or the other. Symptoms include joint and muscle pain, fatigue, allergies including really bad conjunctivitis, iritable bowl, sore throat and mouth, weight gain, and lots more. I had a really bad alergic reaction about 4 years ago when my whole body swelled up including my head, my head was oozing puss all my hair fell out. My doctor, at the time treated me for scabies but eventually, after 3 months sent me to dermatology where they were very concerned and it took over a year to get under control. I have now changed doctor and having had blood tests etc, he told me the hospital queried lupus but my doctor never acted on it. My daughter was diagnosed with lupus 9 months ago and i asked my GP if it could my problem to wich he said no because i would have been showing symptoms for ages before now. Id been seeing him for 30 years with all these symptoms, which is why ive now changed GP. Hes doing some blood tests. I was on 150mg levothyroxine, blood pressure tablets, water tablets (been having issues with kidneys). He says my thyroid is 28 and should be under 2 so now uped it to 200. Ive no idea what this means. Im tired, in pain and depressed and having horrible cramps in myback and legs. Sorry for the waffling but this is the first time ive been able to get all this off my chest. Wonder if eventually there will be light at the end of the tunnel. Ty to anyone who listens , im greatfull

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  • To answer one question - the "thyroid is 28 and should be about 2" is probably your TSH (thyroid stimulating hormone) which is a sign your body is desperately trying to get your thyroid to produce more but it can't. You are a known hypothyroid patient and your former GP wasn't doing regular blood tests to be sure you were on the right dose? You have been on a far too low dose of levothyroxine as a result and that alone would account for how you feel at the moment. But I imagine there is a lot more to investigate.

    I realise you feel pretty rubbish and you have the worry of an unwell child - but you need to report your former GP to the GMC for the appalling care you have had.

    gmc-uk.org/concerns/23339.asp

    Because if he has ignored you - he'll be ignoring others as well. And he might kill someone.

    Hugs

  • I'm just going to see what this doctor says first after all the tests and if it is lupus then I've got even more bullets to fire. thankyou x

  • Hi there,

    I am sorry to hear that you are experiencing these issues. Hopefully the blood tests that your new GP has arranged for you will bring you closer to a clear diagnosis. You might also want to ask to be referred to a lupus specialist.

    According to the Lupus Encyclopedia hypothyroidism occurs in up to 15% of people who have SLE at some point in their life. It is most commonly caused by a condition called Hashimoto’s Thyroiditis, which is an autoimmune disease of the thyroid gland.

    I hope you find this forum helpful and please don’t hesitate to continue to post to share your concerns with others.

    If you need more information about lupus and how it is diagnosed, you can request or download our free pack at lupusuk.org.uk/request-info...

  • Thankyou so much x

  • I have had hashimotos for over 30 years now and just been diagnosed as a late SLE and APS patient. I find I feel much better if it looks like I am being overmedicated according to some blood tests. The Doctors don't like this but they aren't in my body. My TSH is incredibly low now (it was super high before treatment) and below the lab reference range but my Free T4 is in mid range. So that is perfectly normal. They get confused by the 2 conflicting results but I just say autoimmune illnesses never play by the rules.

    My GP is relentless at doing regular tests but many Drs are very dismissive of Thyroid diseases. Because I got it in my twenties they can't dismiss it as an 'old age' thing which they often do.

  • Oh! Same thing happens to me, if TSH is really low and everything else is normal I feel great, my problem is when they adjust levo to cause a normal TSH, I get all chubby puffy, lazy and cold LOL.

    bluesmum fortunately now you have a better Dr, I hope thay run all the proper tests so you can have the right treatment you deserve (and the meds too). My symptoms are similar to yours but the "arthritis' is due to lupus, it is non erosive/ deforming, apparently a rheumatologist can tell the difference from a simple X-ray and the blood tests.

    I hope you find the answers you need!

    Sam

  • I was atypical in that I feel the heat and am slim. Medicated or not. I also consider then not proceed with reducing the thyroxine level as I know what works best for me.

  • My nanan was hypothyroid and she was very slim but showed a lot of the other symptoms, she also had I think it's reynards syndrome thankyou x

  • Thankyou Sam and I know how you feel with puffy eyes, blown up and gaining weight, lethargy etc bless ya... thankyou x

  • I too was diagnosed early and the doctor didn't even want to medicate me as I was so young but eventually did. just hoping now I get some answers from this doctor and someone somewhere gives me something to enable me to start feeling a little bit normal. thankyou x

  • Wow - I have hashimotos and can barely manage when my TSH is above 1 so I have no idea how you are even functioning with a TSH of 28!!!!! As said above to allow a known thyroid patient to become that ill is shocking. To put it into context in my area normal thyroid range goes up to 5 and anything above that would result in a diagnosis and treatment. I take 125-150 levethyroxine a day depending on how I'm doing (I usually need more in the winter for some reason) and 10 of liothyronine so am amazed you've managed to get that high while on a similar dose and would be questioning what is going on - I can only guess that either your thyroid has entirely given up or your body isn't converting the thyroxine and absorbing it. If I were you I'd be asking for an immediate urgent referral to an endocrinologist with specialism in thyroid problems and get everything looked into properly. Any medication increase will take about 6 weeks to kick in and the GP should be repeating tests in about 8 weeks to see whether the increase has done the job or not. If you're still that high above 1-2 then you certainly need to see someone as it can be really dangerous to your health if it isn't brought under control.

    And all I can think is you poor thing - you just be feeling absolutely horrendous and SO tired. I really hope you get some relief soon.

  • Thankyou, I'm now on 200 mg levothyroxine for just over a week and at least I can think straight now lol. I'm having some more bloods done but have to have thyroid checked in 2weeks. Hopefully this doctor is now helping me thankyou x

  • Thankyou all for your comments and help. Im having some more blood tests and àm now on 200 and feeling a little better. I have to back in 3 weeks when ive had them and see the dòctor so will see thèn what he says but thànkyou all x

  • I'd seriously suggest raising the possibility of being referred to an endocrinologist at that stage if you can - it's possible that your body needs a different treatment to just thyroxine for example. I no longer see my endo as I can now manage my treatment myself with the gp doing blood tests but I learnt LOADS from him as had a really good one and it helped me learn what signs and symptoms were thyroid related to know when I needed to get my levels checked etc. Definitely worth pushing for the referral

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