Results at last Graves Disease.: Hi Everyone I... - Thyroid UK

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Results at last Graves Disease.

Hi Everyone

I have not been on the site for a few weeks, as I have been having tests done. I have been diagnosed with Graves disease plus, a 3cm nodule, my endo referred me to a thyroid surgeon, who I went to see today.

I have had an ultrasound last month, plus the fine needle biopsy. And today, I had a camera put in my nose to check my voice box. I am know booked in to have another scan...using dye. The surgeon gave me a few options today, one to take out all my thyroid, another to just take out the left side were the nodule is, or the chemical option which I think is RAI.

So much to take in, I feel overwhelmed with It all.

Does this happen to everyone with a nodule?

Would appreciate any help or advice as I feel quite anxious, Its 5.30 am in the morning have been awake all night.

Brenda

18 Replies
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Hi Brenda,

Responses will come soon from members who have/had Graves. It is too much to take in when you're first diagnosed, then having to consider the options which you haven't a clue what effect any one might have on your overall health.

Personally, I have hypothyroidism, I would think very carefully about RAI unless you have cancer of the thyroid gland. Others will respond.

This is a past post for info.

healthunlocked.com/thyroidu...

Regards.

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This is a link to the latest re RAI:

healthunlocked.com/thyroidu...

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I had RAI in 2007. It wasn't pretty. Probably TMI, but around 6hrs after taking it I had vomit the colour of kiwifruit and black poop! It will eventually send you hypo. If I'm honest, I'm not sure which is worse, Graves or Hypo.

If I had your choice, I would probably get the nodule removed and then see what happens. But, of course, it's your choice. Good luck :)

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Hi Brenda,

Please don't worry. I was diagnoses with Graves in 2013 and I was found to have a small nodule also. Like you, I was very ill and worried about the possibility of RAI. However, with medication, my levels returned to normal in 2014 and when I went to the specialist last week they were still normal.

Stay positive. Give yourself the chance to get well and don't rush into RAI.

Robyn x

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Hi, I have Graves but as far as I know, no nodules. I want to avoid RAI if I possibly can, I just don't want to become under active if I can help it. I have a friend who had part of his thyroid removed because of a lump (nodule?) and he has been fine ever since and is not taking thyroxine - that must have happened in 2012 at the earliest. He lost his voice and had speech therapy but is now back to normal.

I would take my time and think about it carefully, learn as much as you can from people who have had the various things done, then make up your own mind. Having seen our friend I'd provably opt for the half thyroid and nodule removal, that way I imagine you would have a chance of still having some of your own thyroid.

Good that you have been given three options to choose from and haven't just been told - you WILL have this. Just don't rush - or be pushed - into anything 😊

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I didn't have a nodule, but did have Graves Disease. I also had a parathyroid adenoma, which needed removed and was behind my thyroid. I had a double operation to remove the thyroid and adenoma and now take thyroxine daily.

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Hi what dose it mean havin graves after removing thyroid as i know nothink bout wat effects or anythink that it may hav

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Well, having no thyroid means that you have to take thyroxine for the rest of your life, but it is very cheap. In the morning, half an hour before food, you take your tablet and don't take any calcium or anything at the same time, or it will stop it working. The doctor puts you onto a dose of thyroxine and then you see how you go with it. You have regular blood tests every 3 months to see how your levels are and adjust them if necessary.

I am what they call fragile...the amount of medication I need keeps changing, but even so it isn't really all that hard. If I get thyroid symptoms I just get to the dr and tell him that I don't feel right.

But usually now I am pretty normal and cope very well, feeling healthy. Graves is hyperthyroid...after the op you become hypothyroid.

Directly after the op they give you medication to stop your heart racing...protecting you from thyroid storm which is fairly rare, but can happen and would be very dangerous. You would be in the high dependency ward at the hospital for a time after the op, to ensure you are carefully watched in case of thyroid storm.

Mine was complicated by the parathyroid problem as well, so I can't tell you how long you will be in hospital. But I didn't feel sick at all after the op.

Having a node, they may not take your whole thyroid...so your op could be different to mine and your experience and treatment might be easier.

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Thanks but im meaning the graves bit..ive had it removed an on the meds but how now does graves affect a person

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Um, I think I know what you mean. I find that as long as my medication levels are right for me, I am pretty normal. Mind you, pretty normal...not as I used to be. I don't focus like I used to, so had to give up my job in finance. I changed to working with animals, which comes natural to me.

If my levels aren't normal I will get symptoms like I used to have..if I need the levels adjusted down, or symptoms of low thyroid.

I am less energetic and less focussed than I once was...but it isn't too bad. I just watch for things like being quick to anger, which isn't usually me, to tell if I am needing help from my doctor.

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Hello Brenda

I too have thyroid problems ,,but all my tests showed normal so im on the self help trail.my freind was exactly like you she opted for the removal of the gland very small scar was in and out in a day never looked back .She looks and feels wonderfull just said she wished she had it done a long time ago.

i hope this helps and I hope you feel better very soon

Pat

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Hi,

You must be extremely anxious, partly because Graves can cause real anxiety. If you can always take a friend with you to any medical consultation and get them to write down what is said and if you have any questions.

I can only speak about my experience. I had a series of extreme sore throats after a long period of stress, my T4 was measured at 70 (should be between 12 and 22) I had palpitations and was very thin. Cancer of the thyroid nodule was suspected. I was beside myself. But, I read up a bit and opted for fine needle biopsy and instead of RI chose carbrimazole but not block and replace - against their advice - chose to alter carb dose according to monthly blood tests. My blood results began to get back to normal - I put on weight (grrrrr.. but not hugely) and after 18months came off carb in October. Since then bloods have been fine. I still have a nodule but unless I feel unwell again it's staying. I also gave up wheat completely and that's been brilliant and was pretty strict on a healthy diet and supplements. I also take a herbal medication made by herbalist in Bristol and have monthly acupuncture. I was fit enough last May to run first ever 10k and have just taken on challenging and interesting new full time job. You can get better... a helpful book I found is Susan Blum's Immune System Recovery Plan.... xxx

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Thanks everybody for your help and advise, I really do appreciate It, I know I have a important decision to make and will hopefully make the right one.

After I have my next scan...which has been booked for some time this month.

Since doing a lot of research, I have read Amy Myers book and have decided to try a gluten free diet, to try and improve my thyroid health (Thanks Goose)

Susan Blum's book arrived today, thanks Tilly for mentioning this book also. I want to try some vitamins and minerals hopefully they will be mentioned in Susan's book.

I have had rheumatoid arthritis for 20yrs, seems to go hand in hand to get another autoimmune disease.

Trying my best to gather as much information, so I can and get this disease under control. It seems to me, by what I have read on this site, that its all down to cost and not always for the best interest of the patient, sad but true.

So If it was not for this site, I dread to think how worse I could possibly feel.

Once again thanks for all your input it means a lot.

Will keep you posted in due coarse.

Kind Regards

Brenda x

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I had similar symptoms in 2011 had total removal of thyroid - need to take extra vitamin d as parathyroids had a bit of a sulk but having got the dose of thyroid adjusted, life is much better - good luck. my nodule could not be properly assessed in spite of biopsy so it all came out. take care

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hi what are the symtoms of graves diease

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I am tired most of the time, as I don't sleep very well, as I have palpations.

At first I was diagnosed with an overactive thyroid (hyperthyroidism)

Only just been told I have Graves, so only a newbie, will read a few books and use the internet to find out more.

Sorry I can't be more helpful.

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I have Graves. Symptoms are waxy rash on lower legs (called pretibial myxedema) swelling around and under eyes (called thyroid eye disease) all other symptoms are due to misbehaving thyroid

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Long list - you feel terrible 😩

thyroiduk.org.uk/tuk/about_...

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