Can you have Graves' Disease after having had your thyroid out ages ago?
... but, 4 years ago, was tripped up by an empty Mirror-stand, left in a narrow passageway in M&S, and flung onto the concrete floor on my neck, blacked out, and felt odd thereafter.
I have difficulty sleeping without half a pill of Phenergan, as my heart won't slow down enough to fall asleep otherwise - but if I don't take it, I stay awake for 3 or 4 hours in the night. However I've been on Phenergan for 4 years, and have been told I should not be on it for so long.
I have all the symptoms of Graves. ( horrid) I am 74 and a half, had my thyroidectomy when 25 with a very overactive thyroid, and have been on 100 mgs. of thyroxine since, and slept well enough until I was tripped over 4 years ago now.
I had an appointment to see a specialist at Stoke Manderville Hospital, only to find that the specialist shouted at me; 'But you haven't got a thyroid. Go away!'
Beware of symptoms. So many can cross over and be both hypo and hyper. But, what do your blood test results say?
Have you had any antibodies tested? If you had Grave's to begin with, the antibodies will still be in your system. But, I don't think they would suddenly appear if you didn't have a thyroid anymore. However, if what you had was Hashi's, the antibodies will have all but gone.
Why did you have your thyroid out, anyway, if you don't mind me asking? I really think we need a lot more information to be able to help you.
My unfeeling boyfriend made me ill when 25 - and I went down with Rheumatic fever, a streptococcle infection and hyperthyroid. At first I was given pills - but the hyperthyroid came back; so, ultimately, I had a thyroidectomy in St Thomas' Hospital Waterloo.
Then, for years and years, I was fine on 100mgs thyroxine every day - until 4 years ago, when I was tripped over by that empty wheeled Mirror-stand in M&S, and blacked out landing on their concrete floor on my neck.
I felt very poorly, and had to have a knee operation for torn cartilage, too: my eyes protruded again, my heart went arrhythmic, and I couldn't get to sleep; my hair started to fall out (still is); I felt depressed and anxious and had repetitive thoughts all the time in my head.
A retired doctor saw me one weekend when Stoke Mandeville was closed except for a Bucks Care surgery - I can't remember now ( 3 three and a half years ago) - saw me, then called me back in when I was just about to leave and said. 'Stop! You have Graves and should go to my doctor immediately'.
I looked up Graves on Computer, and found I had almost all the symptoms.
The doctor 'lost' the note from this Stoke doctor somewhere in my notes ( but did give me the Phenergan Pill, of which I take half a pill - and this gets me to sleep). I've been on this for 4 years.
That doctor left the practice , but I don't think the current doctor believes I have Graves - even though now I also have loose bowel movements too ( yuk) ; (No cancers found), nor did the Endocrinology Dept man who shouted at me earlier this year "But you Haven't got a thyroid - Go away." I felt really bad.
A different doctor at the practice says that the tunes I wake up with and have throughout the day - is tinnitus!
I am still drawing and writing all the time ( I've written 17 books! so I keep occupied).
It can occur because of a shock to the system - like a sudden death, car accident etc.
There will probably also be some genetic inheritance.
I was attacked and diagnosed with Graves 3 months later.
I had my thyroid ablated in 2005 with radioactive iodine.
After RAI it is considered ' sorted ' but it is still there only now life limiting as I'm now having to manage Graves along with hypothyroidism and thyroid eye disease.
Graves is in my blood, it's a disease, and as such, it's for life, it waxes and wanes, and any upset could easily set you off -
I've only found 1 book - Graves Disease A Practical Guide by Elaine Moore - she's is an American who has the disease - she also has a comprehensive website USA bases.
I hope that helps, you'll need to be your own doctor - there doesn't seem to be much
knowledge or advice - maybe you need a full thyroid panel taken including the T3 ?
Graves is an autoimmune disease and as such it is for life.
The thyroid is the victim of an autoimmune attack - it isn't the cause.
The autoimmune attack on the thyroid sends the person into hyperthyroidism and this can be life threatening. The current NHS guideline is to therefore remove / kill off, disable, the overactive thyroid thereby reducing the health risks.
I was with an overactive thyroid, I drank radioactive iodine and then I was with an underactive thyroid as the RAI has destroyed the gland.
It is now down to me to manage an underactive thyroid and the resultant thyroid eye disease that was caused by the RAI -
My blood hasn't changed - I still have the TSI antibodies controlling my TSH but can't go overactive anymore because I haven't a thyroid to overstimulate.
I am now on thyroid hormone replacement and can have feelings of being overmedicated or undermedicated - the symptoms overlap and the list long.
Some people choose to treat their Graves disease through diet and life changes.
I didn't know any of this when diagnosed , treated and despatched back into primary care without my thyroid and on monotherapy.
I wish I had - the thyroid is a major gland, the conductor of your body parts.
When it misfires, stops working well, there can be a multitude of problems.
Graves disease affects approximately 25% of 1% of the population.
There is very little research, it's a massive learning curve.
pennyannie - I didn't know that Graves was with one for life.
I've found a special soap I'm trying to stop my hair falling out: Taoist soap! I'll see how it goes as its expensive £30!
I get by on stopping my heat beating too fast when lying down trying to get to sleep by having half a pill of Phenergan 25mgs - which works...but Ive been on this for 4 years now.
As I understand things you are now living without a thyroid and presumably on thyroid hormone replacement.
It might be an idea to get a full evaluation of your thyroid status - maybe your levels of replacement hormones need to be adjusted.
You say you have always been on 100 Levothyroxine since thyroid removal some 45 odd years ago - and only started to feel unwell after falling some four years ago.
You can't become hyperthyroid , you haven't a thyroid to overstimulate but maybe your current dosage needs adjusting up or down.
Your doctor may help with the thyroid blood tests, but it does need to be a full evaluation including TSH, T3. T4, antibodies for Graves, ferritin, folate, B12 and vitamin D.
When you have this information people on here will be better placed to help you.
Forgot to say on previous post, bathe your eyes with warm water, every couple of hours, do not use any preparation for a few days and if the drops are not preservative free throw them away, and request preservative free from your doctor.
If it’s any help I reduced my thyroid antibodies by going totally gluten free four or five years ago. It could be a coincidence but they reduced steadily in that time and although antibodies can vary on a day to day basis the trend is definitely downwards,
Well I gave it all up when I gave up gluten, McDonalds, Diet Coke, sultana scones from my local garden centre and a few other tasty things I used to love. I think you’re right, that sort of thing never tastes as good as you think it will.
Oh thank you, I'll give it a go another day, if my fingers run faster than the keyboard.
I tend to check everything before I reply as with dyslexia - having taught myself to read in my late 20's.
I am now in my 70's but I still tend to glaze over - when reading how to do something that is new to me - hence not a lover of flatpack furniture !!!!!!
No, not too much information, but you didn't answer any of my questions. Have you ever had your antibodies tested? Why did you have your thyroid out in the first place?
No, grey goose, I don't think I've ever had my antibodies tested. What are they??
I had my thyroid out as I said, because I was very overactive, and the pills didn't cure me when I was first diagnosed, so that is why they eventually decided at St Thomas' to give me a thyroidectomy in 19 71 or 1972.
Well, antibodies would have told you if you'd had Grave's/hyperthyroidism. If you didn't have Grave's then you probably shouldn't have had your thyroid out, and they pills they were giving you were the wrong, treatment, which is why they didn't work.
If you haven't had your antibodies tested then you didn't get a proper diagnosis.
However, if you did have Grave's you will still have the antibodies, so they could test them now. If you don't have positive TRAB or TSI antibodies then you don't have Grave's.
The endo that shouted at you because you don't have a thyroid is a bit of an idiot. You don't have to have a thyroid to have Grave's antibodies present, and they could affect your eyes - how are your eyes? He should have tested them.
However, I see what he was getting at, because you can't develop Grave's if you don't have a thyroid, I don't think. And, tripping over a display stand wouldn't cause you to develop it. It would have been more intelligent of him to do some tests, though, if you have a lot of symptoms.
But, all is not lost. You could have private testing done without consulting a doctor. You could have your Grave's antibodies tested, just so that you know. But, whether or not the results would interest a doctor and get them to do something about it, is another question entirely.
Greygoose - I will ask my doctor if I can have my TRAB or TSI antibodies tested.
That sounds conclusive.
Yes, my eyes protruded again and were very red and sore. I put Hylo Forte drops in ( as I am allergic to paraffin - and all except 3 eyedrops have this as a carrier). The drops sooth my eyes. The first doctor kept giving me eye-drops with paraffin in ...so I got something rather nasty , called bletheritis, which I can't get rid of. I dab them with bicarb every morning.
Theolose Duo eyedrops might be better than what you are using, HycoSan is another option, just depends on which suit you best. Use a heatbag and massage your closed eyes twice ever a day and Blephclean wipes on your eyelids. That should help your eyes feel more comfortable.
I’m currently in remission from Graves and for what it’s worth I always thought once you had Graves you always had it whether or not you had a thyroid for it to attack or not.
The ‘doctor’ who shouted at you should be utterly ashamed of himself.
Hello again - I was diagnosed with blepharitis by hospital eye consultant.
I was given instructions on how to clean my eyes and assured it would go away if I leaned my eyes properly. I was despatched back into primary care with the same prescription eye drops as I had been using for months, despite asking could the drops not be suiting me.
I checked out my symptoms and learnt that if using eye drops often it is necessary that they be " preservative free " - the ones I had been prescribed were with preservatives and therefore not suitable.
I purchased for myself Moorfields preservative free eye drops and have not had any problems these last five years since I swopped over to preservative free eye drops.
Preservative free are the way to go. GPs don’t like prescribing them because they cost so much more than those with preservatives in them.
The trouble with eye drops is that you have to be really consistent with them and use them regularly throughout the day. A lot of people use them until their eyes feel better then stop and of course their problems return.
I think I must have eye drops in every coat pocket or bag I own. If I haven’t and have an emergency I can get away with buying something cheap but I wouldn’t use them long term.
I didn’t know Moorfields sold their own eye drops. That’s very interesting!
Well - the website states Hydromoor Dry Eye Drops by Moorfields Pharmaceuticals -
I updated my doctor, advising her I was now sourcing my own eye drops and had been successful with the above product, and she revised my prescription accordingly.
It is now some five years on, and Hydromoor has been removed from my current prescription as considered not available on the Nhs. and easily sourced by the patient, over the counter.
It seems to be just another hoop to go through if one has the stamina and wellness.
Hydromoor is trade marked - my original purchases had Moorfields stamped on the packaging but having just looked at my current boxes they are actually manufactured by a company called Rayner, otherwise they seem identical visually and in product details.
Good morning to you too 😊 and thanks for your reply. Sounds like Moorfields have got so fed up with doctors not prescribing preservative free drops that they have decided to produce their own. Can’t say I blame them, hospitals need all the money they can get. Wonder if they will come onto the open market?
Think that’s par for the course with them being removed from your prescription, as far as I can gather that happened to most people. You used to be able to get your consultant to write to your doctor and get them put back on.
Alas preservative free eye drops are no longer available on prescription so you can’t do that now. It’s very tough if that’s what you use.
My rheumatologist keeps telling me to get drops called SnoTears - I found them online but no chemist near me sells them and they contain preservatives so I’m not keen to try them. I’m thinking of telling him I tried them but they irritated my eyes and I’ve gone back to what I’m using - to get him off my back. Nothing is ever easy is it.
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Help!! 3 years after a thyroidectomy and still struggling 
Is it thyroid or anxiety.
Newbie x
I know this may sound like a silly question but -What happens with Graves after RI treatment?
