Thiyrositis/auto immune : I've had another awful... - Thyroid UK

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Thiyrositis/auto immune

birkie profile image
12 Replies

I've had another awful week..no sleep feeling hyper heart racing shaking sweating all the time horse voice..its worse today talking like I have a sore throat...I haven't ..when I'm like this I feel awful I also sweat badly when I get up to go anywhere.. my heart races I shake and need to sit down I'm also irritable.. the horse voice starts first then I start with the other symptoms...I was diagnosed as going threw the menupause about 2 years ago..I knew I was I had the normal symptoms flushing feeling a bit warm it lasted for a minute and felt like nothing could cope with it..then after about eight months I started with symptoms of hyperthyroidism.. I had this condition before so I knew the symptoms I went to the docs and my blood showed I was hyper.but no medication was given as after six weeks my blood came bk normal levels..I have suffered with these symptoms for over 15 months..they flare up quite a bit..affecting my life really badly..I was recently in hospital with suspected colitis but after my colonoscopy they found no colitis just H piylor... I think I was attacking my own body again..this time my bowel..I have server muscle pain and also have ME/fibro..I have seen posts on here about people who have thiyrosits but they have hypo not hyper can you have hyper thirositis?????? I'm not hypo and have no symptoms of it just hyper...I recently saw a rhumertologyst and mentioned these things to him ..he dismissed auto immune as he said their was no medical evidence for it....and as now prescribed me strong painkillers..which I know will make me drowsey as did the last lot of painkillers I was on..how can I get my GP to understand how I am feeling and how its ruining my life..and that its not just the menupause..my last lot of bloods came bk normal levels.but if I have flare ups of the condition how can my doc get my bloods to show hyper..I have gone down when I'm in a flare up but you have to make appointments to see the doc or nurse and its usually a week or more..so I don't think they are catching me enough to treat me .. my endo diagnosed me with thiyrositis...I'm lost!!!

Birkie

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12 Replies
shaws profile image
shawsAdministrator

Your doctor must mean Thyroiditis and did he check your thyroid antibodies? If not ask him. You may have Autoimmune Thyroid Disease (Hashimotos) and the antibodies may be attacking your thyroid gland at present which is making you feel so awful.

When you go for a blood test it should be the earliest and fast. I don't think you're on any thyroid hormone replacement at present - if you were you'd allow 24 hours between your dose of levo and blood tests.

Ask for an antibodies test and if you're positive he should give you levothyroxine. Sometimes you have to do the footwork for the doctors.

I'm sorry you are in a hyper state at present. He should have given you betablockers to calm system down as you're not on medication, I believe.

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I feel sorry for you - no matter who you turn too they are not in the least helpful. Phone GP in morning and make blood test for antibodies a.s.a.p. Also ask for betablockers in the meantime till you get your antibodies checked.

birkie profile image
birkie in reply to shaws

Thanks for the replie shaw..I've had a really bad year health wise and unfortunately my GP has been usless I spent seven days in hospital with vomiting blood up..I'm now recovering..only thing is when I get an app with my GP about this condition and the symptoms he automatically goes back to the menupause..because I have begged him to do bloods but they have come bk as normal levels so he will not treat me I can't take HRT as I had a blood clot some years ago and was taken off contraception..I also had a hysterectomy..he urged me to try HRT..so against better judgment I tried it.. in fact I tried three different types as my GP said it was trial n error..none worked..I told him they don't work because the main symptoms are not the menupause..I also went on beta blockers but didn't really get much relief from them he only put me on them for the menupause..I don't think he has done any blood work for antibodys ..I have blood work coming back from my rheumatologist sometime this week..to be honest I don't even know what blood work he as requested...just said il get some blood from you!!! But when I ring up for the results I will ask what he requested...also when I have blood taken its always been an afternoon app as my surgery is quite busy..so will ask for a morning and fasting one..but will have to book a fortnight in advance that's my surgery unfortunately!!!

Thanks for the advice shaw

Birkie

shaws profile image
shawsAdministrator in reply to birkie

We have to learn and read, unfortunately if we are to get well. You might well be hypo for years but they are unaware of clinical symptoms. They will whip out your womb because of severe problems when it might well be due to being undiagnosed hypo. (Of course we don't know whether or not you are yet but many women might have that op unnecessarily so).

Always get a print-out of your results from now on with the ranges. You really cannot go on the way you're doing. Read the question/answer dated September 11, 2004

web.archive.org/web/2010112...

Demand a Full Thyroid Function Test (might not agree or labs wont if TSH is in range) ask anyway you've nothing to lose. You want TSH, T4, T3, Free T4, Free T3, and antibodies, Vitamin B12, Vit D, iron, ferritin and folate. Even if you phone for results, get the ranges. Always ask for a print-out too for your own records.

Get print-out and post on a new question and members will support/advise. :)

greygoose profile image
greygoose in reply to shaws

Actually, you Don't need T4 and T3 - they Don't give much useful information - just FT4 and FT3. The antibodies are TPOab and TgAB and you need both of them done, not just TPOab as most doctors seem to think. But it's very doubtful he or the lab are going to agree to all that, from what I've seen. So, might be better to opt for private testing, if you can.

I fully agree with Shaws, it was certainly my case that they gave me a hysterectomy rather than testing my thyroid! They are absolutely clueless! I was mainly hypo - with the occassional hyper period - since I was a child - nobody ever tested my thyroid until I was 55. Nobody knew - or cared - what was wrong with me. So, I do urge you to do your own testing - I would have done, had I known such a thing was possible, but that was before the age of internet.

Take care. :)

dollymixtures2 profile image
dollymixtures2 in reply to greygoose

I had to go to a private Doctor to get the TPOab and TgAB which came back poss for Hashimoto's I was told it will burn it's self out , that was about 20 years ago I've seen other private Doctors who helped me and many others only to be struck of by the GMC or threatend by them, the best one died Dr Skinner. I've given up even trying to get any real help. the upshot of it is do what you can for yourself as the NHS can only go so far. I've been told I'm outside the boundary of the NHS! I've had blood tests galore Vit D3 was low ( i've been in pain for years) Parathyroid low, calcium being drained from my bones because of it, it's just one thing after another, at least my GP is more sympathetic now (he had reports from my private Drs) I still suffering from exhaustion etc. So if anyone out there has any answers get in touch

greygoose profile image
greygoose in reply to dollymixtures2

It will burn itself out, eventually - nobody knows how long that will take - but that will leave you with no thyroid. You will then need full replacement dose of thyroid hormone replacement.

But I Don't think anybody can help you, Dolly, if you Don't post your latest labs. Could be your thyroid is already burnt out.

dollymixtures2 profile image
dollymixtures2 in reply to greygoose

Thanks I'll get a printout from GP asap

greygoose profile image
greygoose in reply to dollymixtures2

Good. :)

birkie profile image
birkie in reply to greygoose

Hi greygoose

Thanks for the reply I'm in the progress of putting my house on the market hoping it sells quickly..I will have some equity out of it and will be seeking private testing...also....going of subject... I recently saw a rhumertologyst...hope the spellings right) lol!!! My gastro consultant urged me to get my fibro pain sorted ..the drug my GP prescribed was diyhidrocodine was on it for over ten years...my Castro consultant wanted me off it...after fighting with the GP I eventually got my app with the rhumertologyst ....it was quite disappointing...his examination of my joints ect was poor he never asked me to take any clothes off I had thick tights on as it was frezzing and raining I had to walk to the hospital..but I do only live a few streets away....suppose I'm very lucky!!! Don't have to travel to far...he examined my knees ankles hips ect through my tights and clothing he just put his hand on my knees felt them....no real examination their..the same has to be said for the rest of my body...the usual can you touch your toes routine came in to play...he did take bloods and did x-rays on my wrists which at the time were very swollen so think that's why I got x-rayed..then came the diagnosis yes I have fibromialgia pain and some wear n tear...he has prescribed three different painkillers all of which make you drowsey..his advice if they make my feel like that..." don't take them" what the hell did I go their for back on strong painkillers that can affect my stomach I have H pilory and a gastro prob--im thinking of going private to see another rhumertologyst..I felt like my rhumertlolgyst was just going through the motions..not listerning to me...also I'm still waiting for the results rang yesterday nothing bk yet I saw him on the 10th of Feb..22 days n counting...!!!!

Birkie

greygoose profile image
greygoose in reply to birkie

Well, that's fibro for you! They have no idea what to do about it, it's a dead-end diagnosis when they Don't know what's wrong with you. I honestly think that when you get on a decent dose of thyroid hormone replacement, your 'fibro' symptoms will disappear.

I hope your house sells quickly, too, so that you can get some decent labs done, and then, maybe, start self-treating. Fingers crossed! :)

Heloise profile image
Heloise

Hi Birkie, it is awful to have these attacks which are autoimmune and terribly exhausting for your body. Can you go to an emergency room and tell them you are feeling very hyperthryoid at the moment and need carbimazole at least temporarily.

I'm not sure about timing your blood test as we normally want the TSH to look higher for hypos and therefore suggest early morning but we need yours to look too low so possibly it won't really matter if it's later in the day.

Be a little demanding, you should not put up with those terrible symptoms.

birkie profile image
birkie

Thanks for the reply Heloise

I'm totally exhausted I can't sleep for the symptoms..even when I'm totally wacked out the hyper feeling n sweating keeps me up... I don't live to far from the hospital and last Aug I felt awful the sweating hyper feeling just wouldn't stop my son got me to A&E they did bloods but said I was within range...but they could clearly see me sweating /shaking and I was irritated could not stay still..they just referred me bk to my GP...who will not entertain me as my blood work is within normal levels...but bloods I have had done did show hyperthyroidism but my GP has always made me have secondary blood work which came bk as within range...my endo diagnosed me with thirositis...I'm attacking my thyroid making it go overactive...I do feel let down badly by the NHS and my GP..

Birkie

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