Does any of this make sense?

Feeling constantly unwell is really getting me down.

Have a private appointment with a Rheumatologist week tomorrow as another consultant thought I might have connective tissue disorder ( or disease)

Endo and GP say my thyroid levels are normal, and the latest TSH result is

0.41 mlU/L range ( 0.35-4.50 mlU/L. No other thyroid hormones were tested.

I have an uncomfortable goitre which a few days ago seemed to get bigger and harder and I felt as if I was being strangled. Had a headache for almost 2 days but today woke up feeling fine. Took dogs for a good walk, came home and although I try to eat gluten free and caffeine free I did have a gluten containing Belvita and a cup of decaf tea sat outside in the sun for 10 minutes. Now have a headache , goitre getting bigger and more uncomfortable.

Was it the 1x gluten biscuit or am I reacting to the sun as a day out with a friend last week when it was sunny also brought on the same symptoms.

Feel awful---- anyone have any ideas what is going on?

Thanks.

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11 Replies

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  • Hi Hollyberry

    I can identify with your post. I'm in a similar situation in that i have now been referred to an off-shoot of the rheumotology department where i live for similar reasons that you have mentioned, i am just waiting for an appointment to come through. I also have a positive ANA but thats really about as far as i got with it as it was brushed aside as apparently only a low positive, but hey, a positive is a positive in my book! I have a red malar rash which i've had for years and some similarities with a lupus diagnosis. I also have hashimotos which if you dont know is an automimmune thyroid condition too. I think if you get one condition you can be predisposed to get others? You mention the sun, my face doesnt like the sun and i have noticed last summer that even through jogging pants i get a rash on my thighs. My feelings of unwellness from the sun seem to come on quite quickly after getting out of the sun. I'm hoping for both of us that the rheumatologists can help us as i believe they do quite a lot of testing i'm told and hopefully listen to our symptoms. I'm sure like you we dont want these conditions but we want to feel well again. x

  • Doctors, I think, are wrong to only diagnose the TSH alone and not the patient's symptoms. No other blood test has been done and GP hasn't any idea nor does he seem to care of whether you have or haven't sufficient thyroid hormones, i.e. T4, T3, Free t4, Free T3. If T3 is low you wont feel well. They need education, education, education.

  • lc1973 , thanks so much. It's been a very bad day and means a lot someone can identify with what I have, though I'm sorry for you young through the same.

    I also have the red face rash, though it had disappeared when I finally hot to see a dermatologist. She told me to come back when it flared up again --- and the GP refused to refer me. If this foes turn out to be Lupus I'll be furious as she could maybe have diagnosed it 2 years ago.

    My skin itches if it's exposed to the sun but I don't have a rash anywhere on my body. I was beginning to think I was going mad, thinking I was allergic to the sun.

    I had a raised ANA in one recent blood test, feel cold all the time ( beginning to think ill never get out of fleece this year) but it's the headaches and goitre that are getting me down. Let's hope we both find an answer soon.

  • Hi again...trouble is there is a such a cross-over of symptoms with these automimmune diseases and for some there is no definitive test..like lupus and as you probably already know there isnt a specific blood test for diagnosis of lupus. Thyroid disease is a bit different in that you can get TSH (Which you have had done i think i read on one of your posts) FT4 and FT3 which i dont think you had done but you could get these done privately...there are folk on here who use Blue Horizons for private testing...i may have to use them myself as the lab that does my NHS testing is refusing to test anything other than TSH which is not a fat lot of good when you are trying to increase your dose! I saw a rheumotologist years ago who commented on my red face back then but at that time my ANA was negative and in the end we settled on a rosacea diagnosis but i think we both had our doubts. Perserverence, patience and some positivity (not always possible!).... thats what i need...frustrating as it is..ive got at least 6 stone to get rid of, recurring ovarian cysts (again!) hashimtotos and possibly something else autoimmune going on...but i'm still just about walking, talking and working and i'm holding on to all of those things for as long as i can in the hope that like you i will get to the bottom or as near as i can to get myself well again. Be good to find out how you get on with your appointment and i will let you know the same if you like?

  • Hi again

    I had all my thyroids tested at Blue Horizon last August.

    TSH 0.58 ( range 0.22-4.20) ou/L

    T4 total 79.1 (64.5-142) nmol/L

    Free T4 12.5 ( 12-22) pmol/L

    Free T3 5.18 (3.1-6.8) pmol/L

    Antithyroidglobulin Abs 13.5 . <115 ku/L

    Anti Thyroidperoxidase abs7.3 <34 Kiu/L

    I can't understand how, if they're all within range, I have a goitre. Sometimes I can ignore it but at other times it seems to increase in size and I feel as if I can't breathe normally. It was scanned and I was told it was "modular" and nothing could be done to alter it.

    I'll post when I've seen the Rheumatologist next week.

    Would be interested to see how you get on too, of course.

  • Unfortunately i dont know anything about goiters or the treatment of or not as the case may be. Yes, would be interested to hear how you get on next week. Good luck.

  • I've checked your history, and I can't see any old posts of yours where you asked for help with the above results in this forum and I think you would benefit if you did so. Could you write a new post and copy the above results in, and also include any results for B12, folate, ferritin, and vitamin D if you have them. Put a title of something like "Could I have help with results, please" or something similar and mention the goitre, any symptoms you have, and your latest TSH result too.

  • I have both hypothyroidism and last year diagnosed with undifferentiated connective tissue disease from my symptoms and positive ANA and dsDNA.

    I've not got my thyroid levels nearly right as I'm on T3 which I self medicate under the supervision of my Endo. But still have bad symptoms - I've found symptoms are very similar for most autoimmune diseases so it's very hard to separate the two.

    In march I started my treatment for SLE Systematic Lupus and am on hydroxychloroquine and gabapentin. It can take 3-6 months to work but I've heard it's a very successful treatment.

    My advice is to keep pushing for treatment as I was left for 8 months to get my thyroid under control. So my symptoms could be separated and then treated separately. But I think one can flare and trigger the other so you can feel pretty rough trying to manage both.

    I'm now on the Keto diet and have started exercising which was my goal 6 months ago - something I thought I'd never be able to do as I was so sick.

    Yes I still get tired and poorly but it's such a slow process and very difficult getting a diagnosis from Rheumy! Tell them straight but politely that you need help now and make sure they are aware of all your symptoms.

    Once under Rheumy they should have a helpline with a specialist nurse. Use this if your sick as it helps getting the right advice and if necessary they'll get you in quicker to see your consultant.

    Good luck x

  • Thank you MissFG , for your helpful advice. At the moment I can't imagine ever being able to exercise again--- can just get from one room to another :( These auto immune things are damn miserable.

  • Well, I'm not sure the long drive was worth it. Dr reckons I have fibromyalgia. She pressed the pressure points all over and there was mild pain, always on my left side. But it was so minor, I really think anyone would have winced if another person dug their fingers into them. The redness across my nose and cheeks is rosecea ( as it was thought to cause the blepharitis in my eyes about 8/9 years ago. But further investigations prompted by my optician revealed 4 different things wrong with my eyes-- none serious just troublesome) Bascically she put it all down to the stress and emotion when my partner was killed in an RTA in 2007. I do have disturbed nights but that's never bothered me, and two of my widow friends have far worse sleep patterns than me. She said I could have a goitre that's getting bigger and have normal thyroid levels, which I have.

    So I wasn't 100% convinced by her arguments, and she told me there's lots of information online. Feel I could have saved £250 and just googled !

    Think I'm just feeling tired and a bit miserable. Cannot stand any more 4 and 5 day headaches-- they cripple me,

    Anyway, thanks for all your advice, thought I'd post what resulted today.

  • Low levels of iron can cause headaches. Red blood cells need iron so the oxygen can stick to it and be transported around the body - including the head. I see you have been asked about your test results for B12 - Folate - Ferritin - VitD ? Have you had them done ?

    Sometimes it is the simple things that make us well 😊

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