New graves. They want to remove thyroid.. need some help and advice x

Hello there

I have just been diagnosed with graves. They are suggesting TT because they can't regulate my hyperthyroidism.

I am not keen on surgery at all.. does if make life easier or not..

When I was first hypo I struggled so much with hair loss and low moods.. I would hate that to happen again..

Is it best to go surgery route or persevere and hooe graves goes into remission. I can't have RAI due to eye issues at the moment .

Thank you xx

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Hi Newgraves

Sorry to hear you are having hyperthyroidism problems. I am Hypo but someone will be along soon to help you. It’s an excellent forum you will get great advice. If you have last blood results with ranges that will help. Take good care. Jane xx

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Those who've taken the decision you must decide upon, will respond when they read your post.

If I had to make the decision myself, now that I've read quite a few things', I'd ensure they would prescribe a combination replacement of T3/T4 or Natural Dessicated Thyroid Hormones and to an optimum level, i.e. that you feel well with no clinical symptoms.

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Hang on a minute... You say you were hypo, and now they've diagnosed you with Grave's? On what was that diagnosis based? Because that doesn't sound right, to me.

Besides, if you've only just been diagnosed with Grave's, how do they know they can't regulate the hyperthyroidism? Something not quite right there. Do you have any lab results from various stages of your hypo/hyper states?

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I agree with greygoose.

Something is really not right with the sequence of events being described. It wouldn't be the first time that doctors had got a hypo patient with Hashi's mixed up with a hyper patient.

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Newgraves,

Can you post your recent thyroid results and ranges and say what medication and dose you are taking.

Your post is a bit confusing because you are saying you are hyperthyroid and have been hypothyroid.

If you have thyroid eye disease that confirms Graves Disease but patients can have Graves Disease without being hyperthyroid.

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@clutter That is interesting re TED. I had some thyroid eye disease symptoms but I deffo had hypothyroidism as my diagnosis tho hyperthyroidism was suspected initially due to blood tests but the next ones confirmed it was hypothyroidism (atropic autoimmune thyroiditis) I did have odd bouts of hyper, I also got mixed symptoms like anxiety heart pains as well as the hypo horrors in huge abundance. I was never given a TED diagnosis despite ptosis and double vision, albeit minor, they did test me for myasthenia gravis but tests were inconclusive with some signs but not enough for a definite diagnosis. It doesn’t seem to have progressed thank goodness. I just assumed you could have TED with AT but it was unusual, especially given some say the two disorders are just different sides of the same coin.

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TSH100,

It is not uncommon to have TED with Hashimoto's and some non-autoimmune hypothyroid patients have had TED although it is rare.

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@clutter thanks for the clarification - I did have a doctor describe me as having Graves disease but I presumed she was not clued up on thyroid disorders at all and had not really looked carefully at my notes if she had looked at them at all. You start to doubt your sanity sometimes with it all!

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TSH110,

If you have TED you have Graves even though you may not be hyperthyroid.

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Going strictly gluten free can help both Graves or Hashimoto's

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

Sounds like you are describing Hashimoto's

Graves you need TSI antibodies testing. If these are high that confirms as Graves

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

TPO and TG can be high in both Hashimoto's and Graves

Link about antibodies

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

If you can not get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

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Hi,

When you say they can't control your hyperthyroidism, what treatment have you had so far and how long has it lasted? Have you been being treated with Carbimazole or PTU but they cannot stabilise your thyroid hormone levels?

Have you had a confirmed diagnosis of Graves' with TSI antibodies present?

How are you actually feeling at the moment?

I had a diagnosis of Graves' but it turned out to be thyroiditis. But when I was reading about Graves' I definitely wanted a good go at gaining control of the Graves' with Carbimazole first before I did anything as final as having RAI or surgery. Depending on how I was physicially feeling, I would also have also wanted to be offered another round of Carbimazole if I had relapsed, before going for surgery.

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