Constant hives, hypo symptoms and "borderline" TSH - has anyone had help from an immunologist?

Hi everyone, I'm new here but have been lurking for a while, trying to figure this thyroid thing out.

I was just wondering if anyone has seen an immunologist and come away with a Hashi's/hypo diagnosis, despite "borderline" TSH.

A bit of background: I'm 33 and female. A year ago I was anorexic and miserable. I decided to push myself to recover properly, which I did with the help of a high-calorie meal plan and some CBT exercises. Throughout my recovery, I've had symptoms which could be attributed to low thyroid function - bone pain, joint pain, irregular periods etc. And oh, the weight gain. It sounds almost unbelievable as I type it now, but I have gained 102 pounds in the past year. To go from a BMI of below 17 to over 35 is, to put it mildly, a bit of a mind-blower. (Of course, initally I was eating to gain, and it can take a while for all hormones etc to normalise after prolonged starvation, so I think that complicates things a bit - but my diet is now very normal, healthy and stable.)

Anyway, long story short, I had a blood test in August which was "normal" (not sure of the exact numbers), and then two weeks later I started getting hives every day. I assumed it was an allergy at first, but after a couple of months they were getting me down, so I went back to my GP, who referred me to an allergy/immunology clinic. A bit of Googling revealed the link between hives and autoimmune thyroid problems, but the doctor hadn't heard of that, and insisted my thyroid was fine. In January my periods seemed to have stopped again, and I feel horrible - so I begged for another thyroid test, and my TSH is now 4.3 (range 0.4-4.2). I felt this wave of relief - until my GP said that we must "keep an eye on it", do nothing now, but retest in 3-6 months.

The good news is that my appointment at the Immunology department has finally, finally come around. I've had hives every day since the beginning of September, so I'm hoping against hope that they'll test for antibodies, and that'll help my case for treatment sooner rather than later, because I don't think I can bear to wait 3-6 months feeling like this. i felt as though I was doing the right thing, refeeding myself and working to get over the eating disorder, but I feel as though I've lost my mind in the process - I feel so slow and dull all the time.

Sorry for the long story - but I'd really like to know whether others have been in this situation. I don't want to get my hopes up too much, because my appointment is actually at an allergy clinic, although I'm pretty certain this isn't some new allergy. Slightly afraid I'll just have a skin-prick test, be told I'm allergic to cats, and sent on my way. Can I ask to have the antibodies tests?

Would be really grateful to hear any experiences. Thanks. :)

8 Replies

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  • Hi , Well most of us ,like me, have and endo looking after autoimmune I have loads of auto immune issues. However, usually the first port of call is a good endo, then seeing other relevant docs if and when further problems occur. Some are not treatable. Endo looks after a lot of them as their speciality is very wide.You certainly need thyroid treatment. However, to start with the most important tests are TSH, T4 and Free T3 ( essential) You may need treatment with T4 ( thyroxine ) and when established if FT3 lowish then T3 on a script too.I would say considering what you have said your vit D will be very low , needs testing and after blood test for corrected calcium which must always be in range, then if low vit D, endo best for this.GP will do but not very knowledgeable, hormonal so very complicated.First make sure you have had all the correspondence to GP fro your cosultant and blood tests with ranges, they vary between labs. If you have not had the correct thyroid tests, ask for them. If GP difficult ( as lots are) you can pay for them cheaply. For details, ask me.

    Best wishes,

    Jackie

    If you wish to reply to me or anyone else, lick on "reply to this" or we will not know.

  • Hi Jackie,

    Thanks for that - sorry to hear you're suffering. My vitamin D was indeed low back in August, but I've been taking a supplement since then. I'm due to see my GP again soon, but I'm still at the pre-diagnosis point, so not even totally sure my thryoid's to blame (see below). But I appreciate your help! I guess I'll have to wait a few months, and see how my results turn out.

    Best wishes x

  • Hi Franny_glass,

    I'm pretty new to this forum myself, and I'm sure you will get some great information from some of the more experienced members. I just wanted to respond because like you, one of my first symptoms was hives ( now diagnosed with autoimmune hypothyroidism). About five years later the hives are still going strong!

    I recently had my first visit to the allergy clinic, and spoke to the immunologist there at length. He knew allergy testing was not needed, and says the problem is my immune system is on 'high alert'. He was very knowledgeable about the link between hives and thyroid antibodies. He is running lots of tests, and at the moment I am on high dose antihistamine therapy. I'm due to go back at the end of March so hopefully I might have more to tell you

    Sounds like you you've had a tough time over the last few years, but I'm sure you'll get a few answers at the allergy clinic and you can start to move forward.

    Take care,

    Dawn.

  • Hi Dawn,

    Thanks for that - I hope you manage to get to the bottom of your symptoms. I know how frustrating hives can be.

    I saw the immunologist yesterday, and he actually smiled when I mentioned my "borderline" TSH, and said that well, we don't know that there is a link between chronic urticaria and low thyroid function - it may just be because hives are so common that of course they show up in hypothyroid patients. He also said that "plenty of women my age" have slightly underactive thyroids, and that it's nothing to worry about, and not likely to cause symptoms. They then did the skin-prick tests, took some bloods, and that was that. Stupidly, I forgot to ask specifically i they were testing for thyroid antibodies, but left feeling none the wiser, really. He just said to keep taking antihistamines, and to double up the dose if I felt it was necessary.

    Maybe I'm over-thinking (over-googling!) this - but when my GP said my TSH was higher than it should be, I felt such a wave of relief for a few seconds, until she said we'll just wait and see. It was as though the final piece of the puzzle had dropped into place - all the symptoms: edema, achiness, weight, fatigue, hives, puffy, itchy eyes, irregular periods - could be explained. But now I'm not so sure - maybe I just wanted it to be my thryoid, so I could start to take meds and hopefully begin to feel better. :-/

    Anyway, thanks so much for taking the time to reply. Best of luck to you.

  • Sorry you didn't get any further. Hopefully the tests he did were thyroid related and may have changed since last time. So frustrating not to have a diagnosis, it does make things a bit easier to deal with. Otherwise, if you're like me, you start thinking its all in the head!

    Keep in touch. X

  • Hi franny and dawn, I don't know that hives are typically a hypothyroid problem. But does seem that an overactive immune system could be at fault for both. It has always been recommended to boost your immune system with a whole foods diet and avoiding anything that your digestive system could identify as enemies i.e. artificial sugars, colors, flavors, additives, etc.

    Some people here are trying low-dose naltrexone or LDN which has been used for patients of multiple sclerosis and possibly autoimmune conditions. It doesn't seem to have any drawbacks and can be found without prescription I think. If nothing else seems to help, you could keep this in mind.

  • I'm going to be doing some research into this Heloise, LDN is not something I've heard of before.

    I think my diet could be better too, although I eat a pretty good vegetarian diet, I have never tried to completely cut out additives, etc.

    Thanks for your advice!

  • Hmm, interesting - thanks Heloise. As I said above, I'm not sure my hives are thyroid-related either - but you're probably right that my immune system could use a boost. Cheers. :-)

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