Don't know what is happening!

Don't know what is happening!

For 6 months I have been swelling. Started in my right side of neck/shoulder. Numbness down side of right face and right fingers. Had a ultrasound scan done as had swollen nodes in neck and shoulder.All was ok but was told i hahave a enlarged thyroid. Since then I have had heart racing and slow heart which makes me lightheaded and very swollen top and bottom eyelids with pain and blurred vision. Been to see specialistand was told she tthought Ihave tthyroiditis and bloods would help to narrow it down with treatment. Great I thought....... Unfortunately I have received a letter stating that my bloods was normal. Gp won't listen that thyroid has caused my eye's to swell and want more blood for allergy testing. I have even been to the eye doctors which has said eye's are fine no allergy there and said it's thyroid related. Also had prolonged right ear and jaw ache. Just don't know what to do. Im a full time carer for my husband who is blind and wheelchair bound due to treatment from cancer and a mother to our rugby mad 10 year old son. I need to be better for them.

Sorry for the rant and I wish you all a wonderful new year x

21 Replies

  • Sounds like an allergy to something, look up medical medium Anthony William

  • Hi thank you for your quick reply. I was treated for 4 weeks for allergy and this was the reason I went to the eye doctors at hospital. She said she couldn't see any allergy in my eye's. I even took away my new headboard and changed all our bedding and still happens. Eye's started to swell in November this year and only from Christmas eve my eye's were back to normal then this morning it happens again :( x

  • Sorry - a medical medium? That's a new one on me! Just to make sure I haven't misunderstood - is that someone who communicates with you from beyond the grave to diagnose your condition?

    I can see how that might work better than visiting your average GP...

  • Lol yes

  • Hi av u been tested for lupus

  • No what's that? X

  • My friend has the face symptoms of lupus similar to u. Its autoimmune disease

  • Thanks for getting back to me :) will look it up now. Many thanks and happy new year to you x

  • Take a antihistamine for a few days and see if it helps

  • Will do thank you. Happy New year x

  • Never accept normal from your GP - what is normal for one is not normal for us all. Anyway normal is an opinion and not a result. Do obtain your actual results with ranges and post here or in a new post. You are entitled to them by law.

    You don't look well and your skin looks poorly too. Am thinking you may have a gluten sensitivity which can often reflect in the skin - our biggest organ. How is your diet ? - and do you have any gut issues ?

    You need B12 - Ferritin - Folate - VitD - Iron tested too and the need to be optimal and not just in range. Do NOT accept normal and ask for copies :-)

  • Hi thank you for your understanding. Yes feeling very down at the moment. Don't really have a diet and never had an allergy before. Will look into gluten free. But unfortunately even my endo has said if bloods don't show anything in January that I will be taken off their books! But don't understand that they can see the enlarged thyroid and see my swelling as I'm talking photos of everything. They even taken my heart rate when it was 107. But say they can't do anything it not showing up in my bloods. Finding it really hard to cope with the not knowing.X

  • Donna, completely agree with Marz - see if you can get hold of those results and when you do, post them here. There's something very odd going on, clearly. I'd love to reassure you that it can't be your thyroid but it still may be, depending on whether the specialist was a real expert in endocrinology or just a diabetes specialist a little out of her depth.

    Not sure that I buy the idea of "allergy" either as if it was, it would probably get better then worse again from time to time - but it could be intolerance and something like Coeliac is definitely possible if it really isn't your thyroid.

    Don't give up - keep going back to the doctor, get copies of everything that's been tested and don't accept any "bucket" diagnosis like fibromyalgia - there's too much to rule out before going there.

  • Yes, your face is definitely swollen and swelling is a clinical symptoms, sometimes it is all over body swelling.

    Our heart can play up before being diagnosed (mine did). It is either too slow or too fast.

    Get a print-out of your blood tests and make sure the ranges are stated. You'll have to wait till the surgery opens now. If it's a while since you've had a test for your thyroid gland maybe ask for a new one and ask for a Full Thyroid Function Test (may ot be done) but will include TSH and T4 and, hopefully, T3.

    Ask also for Vitamin B12, Vit D,iron, ferritin and folate as we can be deficient.

    When you get a test for your thyroid hormones make the earliest possible appointment and fast (you can drink water) and if on replacement hormones leave about 24 hours between the dose and the test. Always get copies of your blood test results with the ranges for your own records and so that you can post if you have a query.

    I'm sorry you are feeling so bad particularly when you have others to care for. Hopefully the New Year will turn things around for you. We have to read and learn in order to get better sometimes, particularly with regard to our thyroid gland.

    Copy and paste some of the above into your Profile so that members can read before replying as you wont want to repeat the same answers too often.

    Maybe if you have a sensitivity to something an anti-histamine might be helpful at present.

  • I would only add that it may also be a good idea to get antibodies tested - thyroid and ANA. It may be that is thyroid antibodies causing the swollen eyes and some of the other symptoms. ANA antibodies will highlight other autoimmune diseases such as lupus. It may also be a good idea to get ESR and CRP checked as markers of general inflammation.

  • Brilliant also added to my list :). Many thanks and Happy new year to you x

  • Hi thank you very much for your comment. I have written it all down and im going to phone doctors on Monday! I am due to have more bloods on Monday so hopefully they can just add to the list. Didn't know that i should have fasted for the bloods i have previously :( but will do from now on. You know for the last 17 years i've had to scream and shout for the hospitals and gp to help my husband's treatment for he's cancer. Looks like i will have to scream and shout again :(. Many thanks and Happy new year to you x

  • The 'fast' before bloods is a quite recent recommendation as it's been found eating lowers TSH and food can also interfere with our other hormones which may be tested..

  • Do you have, or have you had, any oral/teeth/gum/jaw issues of any kind, especially on the right side of your face? Do you have any crowns or root canals on that side of your face &/or anything else that may require attention?

  • Hi no i haven't. I have been to the dentist to make sure i didn't have a problem with my teeth as i was thinking wisdom because the dull ache i had in my ear and jaw. Had x-rays and everything came back ok :) x

  • It's worthwhile getting a second opinion. You can ask your dental practice to send the digital X-rays to you by email. They're already paid for, and they're your data. You can visit another dentist and email the digital X-rays over to them.

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