Has anyone ever been diagnosed with a thyroid M... - Thyroid UK

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Has anyone ever been diagnosed with a thyroid Myopathy or Myasthenia or adrenal fatigue?

Scarfred
Scarfred
14 Replies

I was diagnosed Graves. Years of block and replace told thyroid then normal. I wasn't. Now I feel so ill can't get up stairs all body hair gone, no eyebrows hair on head falling out. No sleep tremors and chronic lower left back pain plus more. I need help

14 Replies
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shaws
shawsAdministrator

Have you recent blood test results? Are you on medication? If not, maybe you could have an up-to-date one. You may well be hypo now or undertreated.

If you post your results in a new question someone will comment. They talk a lot of nonsense about normal, when the patient is obviously suffering with clinical symptoms, so there is nothing normal about it.

Myasthenia is another autoimmune condition.

If you have a blood test, also ask for B12, VitD, iron, folate, and ferritin.

A deficiency in B12 or Vit D can give problems.

It is awful when you feel so ill and nowhere to turn.

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Scarfred
Scarfred
in reply to shaws

Thank you for your kind and very informative reply. I will ask GP if I can have these as well as my thyroid function due on Thursday. I can't take this disease much longer. I have lost so much through this illness. I will let you know how I get on. Not that I have much hope of any answers.

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Clarebear

Hi Scarfred - welcome to the site :) Sounds like you are having a horrible time at the moment. Yes it would be very helpful to see your test results when you get them. Hopefully we will be able to give you some advice to help you on the road to feeling better. Xx

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Scarfred
Scarfred
in reply to Clarebear

Thanks for empathy as soon as I get results I will let you know. I need support as I no longer have any due to this heinous condition.

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helvella
helvellaAdministrator

Can you explain a bit more about yourself?

Like how you were treated for Graves. Did you have surgery? Or radio-active iodine ablation?

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Scarfred
Scarfred
in reply to helvella

I was diagnosed in 1998 aged just 48 . I was placed on block and replace which took till the end of 2011. Told thyroid normal I wasn't. Its been an heinous disease. I now suspect I am hypo bloods Thursday next week, I have no faith left in the medical progression both private and NHS. This disease has destroyed my life physically, mentally, emotionally. I am so destroyed I can not manage the stairs to my bedroom, lost all body hair, no eyebrows, head hair falling out at an alarming rate, insomnia, tremors, chronic lower left back pain. Enough is enough. Thanks Annie

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helvella
helvellaAdministrator
in reply to Scarfred

I don't have any numbers to hand, but it is not unusual to have BOTH Graves and Hashimoto's. So the Graves might have remitted - and the Hashimoto's has now gone mad.

So it is quite possible you are right and are now hypo.

As we almost always say, there is a list of things that so often go along with thyroid disorders and should, if possible, be checked:

vitamin B12

folates

iron/ferritin

vitamin D

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Scarfred
Scarfred
in reply to helvella

Thank you for replying, I will ask by GP for these tests.

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helvella
helvellaAdministrator
in reply to Scarfred

Sorry - meant to add, I really think that you should be tested for Thyroid Peroxidase antibodies - and, if possible, Thyroglobulin antibodies.

Being positive for either or both is other taken as at east a strong indicator of Hashimoto's and so could explain what is happening to you.

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Scarfred

Hi thanks for further advice I'm sure my GP will think I am a mad asking for all these tests. I have had terrible experiences from the NHS and the private sector.I was misdiagnosed with bipolar and the horrible event of being sectioned under the MHA a week before being diagnosed Graves. As you seem to have great knowledge, can you be hypo hyper then hypo. I ask this as I suspect I have had undiagnosed thyroid problems all my life. Facts Did not start periods until I was 17 years then few or little periods through my life. Lots of mouth ulcers and dental problems, sore throats, tonsillitis, bronchitis

Terrible reactions to insect bites. I have at my worst been a size 22 and a size 8(you should see my wardrobe) Never had any strength in my arms or wrists Not being able to unscrew tops. Unwanted and excess facial hair. Spent thousands over the years on waxing and electrolyse. Worst of all a serious amount of miscarriages. I eventually gave birth to a precious baby boy in 1997 after the birth I felt the best I had ever been. Talk about medical neglect I have only had two GP practices in my life time and with all these symptoms was never offered a thyroid function test. I am sorry to rant on this dihablitating disease has destroyed my life. I was vey lucky after two further miscarriages to give birth to a beautiful daughter in 1991. A more stessful pregnancy told at 20 weeks she had markers for downs and did I want to terminate!!!!! I also developed pelvic problems and had to wear a pelvic girdle. I believe the birth of by daughter different hormones than a boy, affected the thyroid, any proof? And the insertion of a Marina implant any proof? And terrible stress menopause caused by thyroid to go mad. Thanks for caring, I am now all alone and need to get better. Annie

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helvella
helvellaAdministrator
in reply to Scarfred

Your GP might think you are mad - but only if he is unaware of the reasons or is more concerned with his budget than you (and that is a real difficulty for the GPs).

Many people alternate between hypo and hyper - often repeatedly. This is a common characteristic of Hashimoto's and that has even been mis-diagnosed as Graves simply because it was causing hyper. (And quite a number have both Graves and Hashimoto's at one or other time.)

Mouth ulcers are associated with hypothyroid. And with low vitamin B12.

Insect bite reactions suggest histamine issues which are common in hypothyroid.

We are never going to be able to prove anything historically - except by interpretation of whatever made its way into your records. But we can try to get somewhere from here and now.

Miscarriages due to thyroid are about the most upsetting thing I read here. Somehow when the problem goes beyond the individual it is especially hard. Though often there is no absolute proof, strong suspicion is too, too common.

Do the best you can to persuade your GP of the need for these tests. And, maybe, get hold of at least your most recent previous results to help provide some context for interpretation.

Rod

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Scarfred
Scarfred
in reply to helvella

Hi Rod first of all may I say how wonderful it is to have some support. I do not have any reading. Results told by GP 's receptionist.I had an awful Endo private . Fortunately for me we had a friend who is a heart surgeon after seeing me months into treatment he took my pulse. He was outraged I had been left like this on beta blockers. He had me admitted to his hospital next day ECG (why didn't my GP or Endo do this)My friend explained I had arterial fibliraton, the longer in this condition the more chance of clots, strokes he wanted to stop my heart and restart it. I was terrified, be said I would feel much better after. I never did, my husband them began to believe it was all in my mind. Annie

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Janinit
Janinit
in reply to Scarfred

Hello Scarfred I have a friend who was recently recalled to have her mirena implant removed due to side effects. She has had fibromyalgia for years and hashi symptoms and is consulting a lawyer as have loads of other women esp in the USA. She said that she has been feeling better since its removal. I have put this link on below so that you can have a look - I hope it works- but there is loads of info out there. If you haven't had it removed I would go to your doctor and have a word.... I hope that you get the help that you need soon.

motleyrice.com/medical-devi...

You also might find some answers to your gynae and childbirth issues if you look up Mullerian Anomalies which is a congenital condition of the reproductive tract and kidneys which can cause a lot of your symptoms and is often overlooked because it is so rare. I was diagnosed in the eighties after having three very small birth weight children. the pregnancies left me with painful adhesions which required surgery and that was when the abnormalities were found....although this may not be the case for you it might be worth looking at......

mulleriananomalies.blogspot...

I hope that I have not bombarded you with useless information but you reminded me of a former time when I also was desperate for answers. feel free to message me if you want ... best wishes Janet x

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Florence-Ann

Hello - Thank goodness you found this site! Hang on in there!! I am afraid that I have no specific advice to offer as I am not knowledgeable like so many who contribute but the one thing I can say is that everyone is so helpful and just being able to have contact with people who care is invaluable. I am quite sure that if you follow up the suggestions given here, you will start down the correct route. I am sure I speak for everyone in wishing you good luck. My very best wishes. Flo

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