Thyroid UK
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Wish this illness had set symptoms

One thing I hate about this illness is at times it feels like Chinese water torture.So many different symptoms you get rid of one and there are loads of others.Aching knee.weird little tingles,dry eyes,ulnar nerve,tight muscles,swollen tongue,joint aches I don't feel massively unwell just not really me.No zest for life really.Just loads of really bloody irritating stuff.

Oh and when unwell it takes ages to shift.

It drives me nuts ever shifting symptoms

9 Replies

aww bless I no, it sucks, I have days where I just get through the day with vague issues, somedays I do feel unwell and when you have kids its no joy, we still have to keep going. I had the swollen tongue and scollaped edges, pain pain and more pain, sometimes mild and sometimes debilitating.

like you said, you get rid of one thing then get another.

I am starting to sort my immune system out and find the cause before I spend money I cant aford.

good luck, just thought I would comment to say your not on your own.



Hypo affects the whole body in that T3 is needed in every single cell in our body - and we have billions - so if T4 is not converting properly or doesn't suit us, or if undertreated we still have troubling symptoms.

Some GP's may consider the addition of some T3 to a reduced T4.


My Gp's refuse to add T3 even though my t3 is at the bottom end of the scale they can't see the wood for the trees.I'm always at the doctors I think this is because my body still doesn't work quite right.And that includes the immune system.

I took in the email about Tsh being suppressed but the doctor didn't even look at it.


I think you may have to change doctors. If they want to remain ignorant and keep you unwell - what's the point of being a 'physician' - a few points from the dictionary:-


A physician is a professional who practices medicine, which is concerned with promoting, maintaining or restoring human health through the study, diagnosis, and treatment of disease, injury, and other physical and mental impairments

2.Medical practice properly requires both a detailed knowledge of the academic disciplines (such as anatomy and physiology) underlying diseases and their treatment – the science of medicine – and also a decent competence in its applied practice – the art or craft of medicine.

3. For example, the ethics of medicine require that physicians show consideration, compassion and benevolence for their patients.

First of all try to get the name of a sympathetic Endo either by looking at the Hospitals then click on Hospitals survey. Or write another question asking if anyone knows one in your area.

Write to your GP that you wish to be referred to this Endocrinologist as you know many people are managing to get their clinical symptoms under control and lead a normal life. You want to get a professional opinion as the medication you are taking at the moment isn't working for you.


Me, too - or at least a list of symptoms that concur with mine. I have Graves' and the symptoms (in books) are:

? unexplained or unexpected weight loss, despite having an increased appetite - NOPE

? hyperactivity - NOPE

? mood swings such as anxiety, irritability and nervousness- NOPE

? difficulty sleeping (insomnia)- NOPE

?feeling tired all the time (fatigue) - not really or no more than usual from chronic pain

?muscle weakness - NOPE

? needing to pass stools (faeces or 'poo') or urine frequently, NOPE

? diarrhoea- NOPE (just the opposite!)

? excess fats in your stools, which can make them greasy and difficult to flush down the toilet (steatorrhoea)- NOPE

? sensitivity to heat and excess sweating - No more so than usual (been overheated since menopause 7 years ago)

? very infrequent or light periods, or periods stopping altogether - NA

? infertility - lets hope so! I'm 54

? loss of interest in sex - NOPE

I am such a bad Graves' patient; I don't have the symptoms. The only one I wanted was the amazing weight loss, the only one I got was cardiac problems! Go figure.


Vanessa B you have described the symptoms of B12 deficiency. particularly the tongue and tingling issues. watch the video clip I posted and take no supplements of B12 for two months and get your gp to check your levels and keep checking them at least annually. B12 deficiency is insidious but dangerous. Or ideally Active B12 test at Guys or private lab. Those symptoms will only get worse, watch the video clip I posted.



efilwol, hyper (graves) is infinitely better than hypo!! I've had bot ,that's why it's called hypo hell!


They both suck - better or worse depends on the severity. Thyroid storm is very unpleasant as is hypo coma. Been there and they were both equally nasty and life threatening.


vanessa B you have got to find a decent doctor, ask around preferably find a thyroid patient in your area that has good GP - change practices if you can't find one at current practice. Put your dissatisfaction in writing they don't like problems being documented, Take someone with you who can say how you've changed and who will stick up for you. There is no reason why you shouldn't get proper treatment.

Have a look on this site too there are knowledgable people there....


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