Hashimotos and connective tissue disorder

I was diagnosed 13 years ago with Hashimotos and was pregnant within the year since then my legs and arms had started to gain fat or a thickness to tissue over the years I put on 2 1/2 lb on each year. I have had all bloods done they are negative to active inflammation. I believe I have connective tissue disorder or eosinophilia fasciitis (shulmans syndrome) I don't believe it's active and was very slow in progressing mostly on arms and legs.

My question is has anyone ever had this or same symptoms.

24 Replies

  • There is no history in your Profile, ie. when diagnosed, with what etc.

    I understand you have hashimotos but do you have a recent blood test result, with the ranges that you can post?

    Swelling is a clinical symptom of hypothyroidism, especially when on an insufficient dose.

    The aim of taking levothyroxine is to bring TSH to 1 or lower. Not to have it somewhere in the range. Doctors seem to be unaware of this fact.

    To have a result somewhere in the TSH is only for the initial diagnosis but isn't good enough when we are diagnosed. Before we are diagnosed of course the doctors use the range for us to be diagnosed, but once diagnosed and given levo the aim is a TSH of one or lower.

    You need an up-to-date blood test and the most important are the frees. TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

    Tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours (approx) between last dose and test and take afterwards..

    All vitamins/minerals have to be optimum - not just somewhere in the range. B12 and Vit D in particular are pro-hormones and essential to be optimum.


  • Hi Joanne, it sounds like you have been under medicated for many years. Do you know about mucin? It is a layer of your skin which accumulates when you are hypothyroid.


  • Yes I do know about mucin, but I have this thickening on my arms and legs all other swelling has gone since being on auto immune paleo

  • I was diagnosed 13 years ago not showing any symptoms just borderline results I am at the moment tsh 1.5 t3 26 and t4 12, I have had bloods done and show no thyroid antibodies at all, I have been auto immune and gluten free diet for 8 months, I lost all my puffiness within weeks but still have this thick tissue ridge down fronts if my arms and below my calves mostly on the back, it doesn't come and go it's always there

  • I'm on thyroid s 120mg and now taking 50g Levo to adjust t4 go back in 2 weeks

  • All my bloods have come back perfect, nothing wrong, only eosinophilia count was only slightly high, have had suppressed tsh in the minus figures for years, endo said I was t3 toxic on my last bloods so that's why they have told me to lower thyroid s from 180mg to 120 and take 50 levo

  • I have heard about mucin, does this not accumulate all over? My doc said it was muscle!!?, there's no muscle in the back below my calf only tendons🤔 have been referred to tissue expert at Salford hospital for a deep tissue biopsy

  • Hi Joanne I have Hashimotos and connective tissue disease. Do you have a positive ANA?

    After a year I've finally found out its myositus (just a week ago and commenced treatment) although had a weak positive for the antibody in June 16 which they conveniently ignored. I'm not happy so asked to be referred to Dr Chinoy a renowned global specialist based at Salford. His secretary said there's a 6-8 week waiting list on the NHS. I'm very pleased about seeing him, letter has been posted today, is it him you've been referred to?

    Do you have a positive Mi-2 antibody at all? Mine showed up in an MRI they've not bothered with a biopsy which is why I want a referral as there's 3 types of myositis.

    If I can help please just ask x

  • Wow what is myositis? I gave also been referred to Salford hospital not sure when my appointment will be, all my antibodies were normal, my thyroid antibodies came back normal, apparently my thyroid has shrunk to nothing that's why not showing on tests, I thought I had lipodemia, then myexadema then mucin, mostly in my arms and legs and it hurts sometimes, I'm so grateful there is someone else with these problems, I thought I was going mad. I have another post called myexadema and my photo of my legs is on there. I was always very petit not now with thyroid 😌

  • Myositis is a rare muscle disease where the immune system attacks your muscles causing weakness and muscle wastage. I have weak neck shoulders thighs and difficulty swallowing. I thought it was Lupus as I had a positive ANA until my MRI of my pelvis and thighs, showed inflammation in my thigh muscle.

    Salford hospital has an excellent reputation for connective tissue disease google Dr Hector Chinoy and if you can ask to see him. I hear he's a very kind patient experienced consultant in his field and listens to his patients that's why I asked to be referred as I live nr Sheffield.

    Yes I saw your pictures it looks very unusual can you walk ok? Does it affect your mobility? Are you on any medication?

  • I have terrible neck and shoulder pains, larger thighs which over the years have gone bigger but don't look fat just strange shape, I can do slow walking ok, but I try to get to the top of our 3 storey house and my muscles feel like there's no energy in them and sting, I work 10 hr days on my feet inpaticar my right calf really throbs and is bigger than the left 🙁 Yes my legs look strange don't they, I've been back the go a million times, I had to pay private to get referred 🙁

  • GP

  • I have a 3 storey house and struggle getting up the stairs tbh my symptoms are text book I just don't understand why my Rheumy has left me to decline as I was under my Endo and they were blaming my thyroid. I said in march I was scared I'd end up in a wheelchair so eventually they requested an MRI.

    Can't believe you've had to go private to get referred. It's awful hat when your genuinely sick and it's serious they leave you. If they'd investigated last year it could have saved me 12 months of muscle damage that might not be repairable

  • I have very slight elevation in eosinophil count, I thought it might be shulmans disease

  • I have been referred to Dr chinoy too!😀

  • Aww will you keep in touch let me know when your in and how you get on? My referral only got posted today so I've a long few weeks on nasty drugs to wait x

  • I saw a rheumatologist a month ago they had the wrong house number on my post so I never got it, I'm hoping I haven't missed the appointment, awaiting it in post to correct address, will keep you posted, let me know when yours is. Thanks for your help

  • I will x

  • What's the treatment?

  • I'm on Mycophenolate with bloods every 2 weeks to monitor me, they suppress my immune system, usually used for organ transplants but works for some with myositis. If that doesn't work it's trying another drug until we find one that works everyone is different. Unless it's inclusion body myositis where there is no treatment

  • Ohhh no, one of my docs said the lumpy mass at the bottom of mulga was muscle, there's no muscle there is tendons, they just fobbed me off and the same doctor few years later said there's nothing wrong with it 😡

  • Well they will just fob you off so they can save money out of they're budget..... Who shouts loudest gets!! , I bet they hate me I'm always demanding help but this time I had had enough it's been going on 5 years, I hope your medication helps you 🙂

  • Ohhhh God!! Do you feel any different?

  • If you have a look at my photo the back of the knee, I thought it was inflamed lymph nodes but my muscle down the back of my leg could potentially pulling the skin tight, I look like I have stitch marks in skin, lol

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