Worried newbie

Hi all, I'm 34, I have hashimotos thyroiditis, have had 'atypical migraines ' for years and recently developed terrible pain and swelling in my knuckles and wrists. Three days ago I developed a painful swelling in my left temple and couldn't open my mouth properly. I went to the Dr and he put me on steroids for suspected temporal arteritis. The swelling in my temple has subsided but the pain is still awful.

I'm going back to the Dr tomorrow, any support/advice/comments gratefully received.

Helen

8 Replies

oldestnewest
  • Hello,

    Sure you are very worried, but hopefully your appointment tomorrow should bring some clarity.

    Guess your GP did some blood tests and you are returning for results. Have you had any other symptoms other that what you mention? What dose iof Pred did he start you on? pain should subdue somewhat, but not necessarily go altogether. Wonder what made your GP suspect GCA, normally they would rule you out from an age point of view.

    Please let us know what happens next.

  • Thank you for your reply, yes waiting for blood results and further examination tomorrow. Dr suspects GCA because of the symptoms I presented with and I think because I tend to present in atypical fashion for most illnesses he is not ruling it out based on age alone. Difficult to say other symptoms as I have so many day to day, not sure which are thyroiditis and which are not! Tiredness, memory loss, water retention, bloating, nausea, achy joints, useless fingers! What else could it be if it's not GCA? Starting dose of 30mg and been on them for 3 days.

    Will see what he says tomorrow, he did suggest doing a biopsy, I suppose that will depend in blood results tho. Is there an auto-immune link between hashimoto's and GCA?

    Sorry for all the questions. Thanks again for your reply x

  • Hi again,

    Tiredness and achy joints are certainly symptoms of GCA and/or PMR.

    As GCA is an auto-immune condition, then it's very likely there is a link with your Hashimoto's - if your system is already compromised then you are probably more likely to succumb to another a-immune condition. Many on here have more than one illness. Sure PMRpro will be along shortly with more medical info.

    A biopsy doesn't always prove you have GCA - if it's positive then yes you do have it, but if it's negative that doesn't always mean you don't have it! The tiny piece of artery taken as a sample may not be affected, but another part of the artery may be. Hope that makes sense!

    If it is GCA, then 30mg may not be enough to control things - usual start is 40mg, maybe upto 60mg - but as your GP perhaps wasn't 100% sure he may have decided that 30mg would be better.

  • Yes that makes sense :-) I'll see what comes of tomorrow and let you know. Thank you x

  • My GP started me on 30mgs and it worked like magic but I had no idea, at the time, what starting doses were meant to be for GCA so just followed her advice... she believed that the recommended 40-60mgs was too high... maybe I was lucky?

  • I'm sure the average GP probably DOES think 40-60 is too high. However, the rheumy faced with a patient who has gone blind because too low a dose was used to start is unlikely to agree. And THAT is really the only reason such a high dose is used: to reduce any inflammation interfering with blood flow to the optic nerve as quickly as possible. And the reason that any patient with suspected GCA belongs in the hands of a rheumy or eye specialist as an emergency patient - just the same as a heart attack or stroke. They all have the same fundamental cause, reduced blood flow to tissue, just different outcomes.

    If the GCA isn't affecting the cranial nerves (in the head) then 30mg is probably plenty.

  • Not much to add to DL's comments - except to say that fatigue and achy joints are symptoms of probably 90% of autoimmune disease!

    The sudden pain and swelling in your hands isn't what you'd call typical of PMR - more of some form of inflammatory arthritis. The jaw thing is also not entirely typical - it could be a tempromandibular joint problem. However - the GP saw you and we can't and it was right I think to cover GCA though a slightly higher dose might have been better, that is low for GCA. Do you have any other symptoms? Scalp pain/soreness, jaw pain when chewing that goes when you stop?

    I think your GP needs to phone the local rheumatology department and say he is sending you to them as an emergency.

  • Well, my Dr has stopped me taking the steroids because they are 'not working', he has given me amitriptyline for the pain. We are still waiting for test results and once they are in he will be checking whether to refer me to the rheumatologist. Thank you again for your comments and support. It appears the Dr has no idea why I'm getting these symptoms and admits he is 'stabbing in the dark'! Most likely post viral and made worse by my lowered immunity, is his current stance.

You may also like...