Double Autoimmunities

Question - does anyone deal with thyroid autoimmunities (Hashimoto's/Graves) in addition to another autoimmune disease? If so, which was discovered first, and how was it all diagnosed? Which diseases do you suffer from?

Thanks in advance! I'm still in the process of getting diagnosed with my thyroid autoimmune disease. Not sure which it is, but my thyroid antibodies were counted at 410. Oddly, my TSH, T3 and T4 are all normal, so I asked my doctor if it's possible that I have a more systemic autoimmune disease causing my symptoms which happens to be attacking my thyroid as opposed to a thyroid specific autoimmune disease, and we just happened to discover the thyroid autoimmunity in the process. He said no, that I definitely have a thyroid specific autoimmune disease based on my antibody count, but that because my symptoms are fluctuating all over the map, it's possible that there is an additional autoimmune disease yet to be discovered.

I see the endo on the 14th, but I'm curious if she will be qualified to check for other autoimmune diseases, or if she will even want to bother and perhaps I should be making a tandem appointment at a rheumatologist.

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23 Replies

  • Nonameslob,

    Thyroid peroxidase antibodies of 410 are positive for autoimmune thyroid disease (Hashimoto's) which causes 90% of hypothyroidism. It can take years for hypothyroidism to develop. In the early stages the infiltration of the thyroid gland by lymphocytes causes inflammation and as cells die off they dump hormone and may cause transient hyperthyroidism. Sometimes thyroid levels remain normal and it simply *feels* as though one is hyperthyroid. Typically thyroid levels will fluctuate during Hashi flares.

    UK doctors are not good at accepting that euthyroid Hashimoto's can make one very symptomatic, probably because there is no cure or treatment for autoimmune disease. 100% gluten-free diet may improve symptoms and reduce antibodies.

  • I actually live in the US, but would you believe that Thyroid UK is the only thyroid group on here from what I could find? Lol. These issues have officially caused some pretty severe tachycardia and my doctor put me on beta blockers until I get into my appointment. With a symptom like tachycardia that is impossible to imagine, I find it really hard to think that an endo would right my symptoms off and refuse to believe that euthyroid hashis is causing symptoms?? I guess we will wait and see. I also have a thyroid riddled with (small) nodules, and the size of the gland itself is 3.4 by 3.1 cm, which seems pretty small to me. So even though I'm euthyroid, I might just raise hell if they refuse to treat!

  • Nonameslob,

    There are many US thyroid fora:

    What are your thyroid results and ranges?

    If you are euthyroid you won't be treated. Treating a euthyroid patient with Levothyroxine will usually make you feel hyper and will make tachycaria worse. I really recommend you investigate gluten-free diet as that may slow progression to hypothyroidism as well as improving symptoms.

  • I don't anticipate that they will just give me synthroid. My doctor thinks that my endo is going to want to do an oblation of my thyroid. Im already gluten free - have been for two years after some issues with my stomach. I will check out the other forums, thx

  • Nonameslob,

    Ablation is usually for hyperthyroid patients and very occasionally for Hashi hypothyroid patients.

    If you post your thyroid results and ranges we can confirm whether or not you are euthyroid.

  • I don't know what my t3 and t4 results were, but my TSH was 2.2.

  • I'm in the US Also and haven't found a site as helpful as this one either. Very frustrating!

  • Yeah, I'm with you. The formats of some others are really difficult to navigate as well.

  • without seeing all your results we cant tell

    but auto immune Hashimotos causes a myriad of symptoms and going gluten free is the first step to sorting some of them

  • I'm in the US as well.

    I have lupus (SLE) and Sjogrens. I also have hypothyroidism but blood tests were always in "normal range". I had to go to a private endo to get treated (he took one look at me and said based upon my symptoms, I was clearly hypo. He saved my life since levothyroxine alleviated many symptoms almost immediately. It has taken two good years to get dosage sorted out. Autoimmune disorders certainly complicate things.

    I've only been tested once for hashimotos and the test came out negative but I was already on thyroid meds when that test occurred. I truly believe my hypothyroidism is autoimmune related on some way.

    I'm not gluten free and tested negative for celiac. I hope you find some help. Have you been thoroughly tested for all autoimmune disorders?

  • I haven't yet. My primary doctor has stopped at the test coming back positive with thyroid antibodies, and is sending me for an endo for further treatment. I just feel like whatever it is, it's not JUST hashis or graves. When I was much younger my old family doctor thought I had lupus based off of a blood test, but she never followed up with me about it. I wonder if there isn't something more systemic going on.

  • I think it would be prudent for you to get referred to a rheumatologist who should run the full gamut of tests on you. For me that meant 14 vials of blood plus a urinalysis. From those tests we found out I had lupus and Sjogrens. I also tested slightly positive for APS but in order for you to be diagnosed with APS (aka "sticky blood") you have to have had an "event" like a TIA or DVT.

    Would you old family doctor still have your records so you could see what test came back positive that made them think you might have lupus? How horrible that lupus might have been suspected and nothing was ever done about it. Hmmmm....

  • I'm not entirely sure which test she ran that made her suspect Lupus. She wasn't trying to diagnose me with anything, she had just done a full blood panel for a yearly appointment, and saw something that concerned her but she didn't tell me what it was specifically, just that it could be Lupus, and I was never able to get in for a follow up. I was young, so I didn't advocate for myself. If I had to guess, I wonder if it was my red cell distribution width, as during this process of getting a diagnosis, and any time I've ever had a CBC, it has been elevated. Recently, I read that with lupus that is often the case. I wonder if when she ran that particular test, perhaps it was elevated even more than usual.

  • I have sjogrens and recently had a hyperthyroid. This happened two years ago and my thyroid returned to normal or normal enough I guess. I started having thyroid symptoms again and tested hyper a few weeks ago then second test last week was normal. I'm honestly thinking it's my immune system attacking my thyroid along with the muscles and joints that caused it.

  • Every time I mention antibodies, everyone immediately tells me it's probably hashi's, when in reality, my doctor seems to think it's Graves. Is Graves rarer than Hashi's?

  • I read graves is the most common reason for hyperthyroid.

  • Hi,

    I was diagnosed with IBD, which is an autoimmune disease, when I was 27. I was diagnised with Graves when I was 61.

    The last time my antibodies were checked, in March, the Anti-thyroidperoxidease abs were 109.1 and the Anti-thyroglobulin Abs were 2529.0. I had RAI over 3 years ago.

    While receiving treatment for Graves, I was tested for another illness, which fortunately turned out to be negative, but I remember the Endo saying that just becase I had 2 autoimmune illnesses didn't mean I couldn't get another.

    He was also interested in the fact that my father had had MS and an aunt had had RAI.

    Suggests there's a genetic link to autoimmune illnesses, but not heredatory.

  • I'm in U. S. too! I was diagnosed with Hashimotos back in 1996 but believe I had it well before then just never picked up. Just last week I was diagnosed with LPP (Lichen Planopilaris). I also believe I have the skin version as well (Lichen Planus) but since my dermatologist did not view the skin flare up (that was last Winter) he passed it off as eczema. If it flares up like that again I will make sure to have a biopsy done as was done on my scalp a couple of weeks ago. I have a cousin who also has Hashimotos and she has RA and is borderline diabetic.

  • It's highly possible that you have more than 1 auto-immune condition going on at the same time. Ceoliac disease (wheat allergy) often goes hand in hand with under active thyroid problems. A lot of people on this site say going gluten free helps them, even if they don't test positive for gluten allergy/intolerance. Not sure it would help me as I already eat a largely gluten-free diet so when I was tested it was negative.

    I was diagnosed with Hashimoto's disease four and a half years ago.

    I still had ongoing symptoms when on 100mg of levothyroxine, even though my TSH was through the floor and I kept being told by my endo that I was over medicated and at risk of atrial fibrillation and osteoporosis. I wasn't!!! I had to keep insisting that I stay on the dose that made me feel much better and only succeeded when I asked them for proof that a low TSH would result in AF and osteoporosis. Since they had no evidence they let me stay on the higher dose, which still wasn't enough to relieve all symptoms.

    Eventually because I kept insisting that I still had symptoms, they did a TRH test, where they take a blood sample, then inject you with something and then take another blood sample. Since I didn't react at all, they sent me for an MRI brain scan - they were checking to see whether there were tumours on the pituitary gland - there weren't, but I have now seen a letter sent to my GP that says that my pituitary gland is not producing TSH and therefore TSH should not be used to monitor my Hashimoto's.

    I am convinced that this is another autoimmune condition, but since I've had 2 endo appointments cancelled by them, I can't find out until December when I have my next appointment.

    I have a print out of this letter to take to future endo and doctor appointments as they never read your notes and I'm likely to have them testing TSH in future.

    I now self-treat with NDT and am seeing a functional health practitioner as I have completely lost faith in the NHS.

  • Hashi's, psoriasis, lichen planus, though LP is often confused w psoriasis so I could just have one or I could have both. I refused a *second* biopsy of my vulva - er, thanks but no thanks - as the first was inconclusive and I just haven't got a lot more spare skin there to give away.

    Still I feel much luckier than my friend who has debilitating RA and even luckier than my other friend who has coeliac, lupus and vitiligo.

  • Uh, yeah, I don't blame you on the refusal for a second biopsy. 😩 God, I'm sorry you're going through all that!

  • I have Lichens Sclerosis as well as an under active thyroid.

  • I have lichens sclerosis which is also auto immune along with under active thyroid.

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