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Thyroid UK
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Hyperthyroidism and thyroidectomy

Hi All

I have been diagnosed almost 4 years ago with hyperthyroidism. I start taking 10mg of carbimazole and then 2 years ago been reduced to 5mg. Then after having some family problems had to back to poland for few months where I totally done nothing about my thyroid. Anyway back to uk check blood test and back to carbimazole 25mg...following now 5mg again. Now I have swollen neck aswell. In this 4 years I gain 25kg and this is my nightmare! Look like typical pumpkin with my height of 158cm (5.2) I'm due to thyroidectomy on 27jan 18 and not sure what I can expect... Can I loose some weight? If I gain more I will have to go so some kind of psycho as I can look like that and having more depression. I read all those horror stories how bad it will be after thyroid removal. And yes I had option from my endo about radioactive iodine but during my work at airport I'm working with people so my decision was surgery(please don't judge).

What about medicatiin after surgery? Which one is the best really? I have read a lot on posts about NDT and Armour Thyroid.... Many thanks guys

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Hi firstly usually with hyperthyroidism u tend to lose weight not gain, you may be different. I had a goitre and had a total thyroidectomy which I do not regret but only because it was pressing on my windpipe otherwise I would have gone for the altenative. Following my total thyroidectomy I only had 1 parathyroid gland left which was responsible for supplying my body with calcium. .6 months on and its still not working and I am on calcium supplements which really effect my stomach and have to have my calcium checked every 2 weeks. Please if you haven't got a goitre think very carefully about a total thyroidectomy maybe the other may suit you better. Take care Carroll x

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Hello, I think it'd be worthwhile checking on blood results now before your operation, so you have a point of reference and can see now where there are problems or deficiencies. You can then make an informed decision about the best medication.

An old acquaintance has Graves' disease and RI in her twenties and has had a pretty successful time of it without a (functioning) thyroid on Levo. So, theoretically, there shouldn't be a problem, but on this forum we know that there can be. It also doesn't sound as though you are fully informed by your doctors?

I think what is critical is looking for (a) presence of antibodies (all of them) (b) evidence that your tsh and t4 levels look euthyroid on carbimazole (c) thyroid conversion - so good free t3 (d) reasonable levels of b12, folate and ferritin and vitamin d.

Others will be able to advise on specifics as I don't have Graves, but once had a Hashi's flare that GP mistook for Graves!

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I had my thyroid removed in Oct 2015 and am now well again and have not put on weight. I think that it's slightly easier when you have no thyroid at least you are starting from scratch so to speak with your levels i.e. nil.

This site is brilliant at sorting out problems and dosing I have followed the advice and now feel well again.

I was in one day and out the next for my operation, just make sure that you choose an experienced thyroid surgeon with plenty of knowledge OK.

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Brilliant thank you for those words

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Get copies of your blood tests, especially all Thyroid antibodies tests

Also including vitamin D, folate, ferritin and B12

Post results and ranges on here for advice

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

If you have Graves' disease you should have had TSI antibodies tested too

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Graves and Hashimoto's are both autoimmune. They often overlap.

With both Hashimoto's and Graves gluten is very very often a problem

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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Not sure how to post it here

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Thank u all but its too much hassle with all those blood tests... Lately I'm feeling like a blood doner. I wont do private tests as Its quite expensive... I'm going for another blood test tomorrow, gp wont see me now - I just called and I'm working now till surgery. And for now I'm more stressed than ever before. Stared drinking iodine now to help surgery. That's all. Tha k u all nayway for support

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I’ve got Graves’, and am hoping it will be brought under control. However, in the process, I did have a period of being over-medicated, and put on weight almost as quickly as I’d lost it prior to diagnosis. I think one of the problems when we are hyper is that our metabolisms work so fast, we can eat pretty much whatever we want without putting weight on. This is a difficult habit to lose ! Perhaps spend the time while you are waiting for your operation trying to make sure your diet is as healthy as possible, and perhaps working on the fact that you will need to eat less once you’ve got no thyroid. The only way I can make this work for me is to be disciplined about weighing myself regularly.

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Hi. I had total Thyroidectomy in January 2016. I recovered well after operation. Scar healed well using vitamin E oil and Bio Oil.

I was Hyper with Hypo symptoms also. Unfortunately there are a few of us that suffer with both. My 2nd Endo confirmed this does happen to some. So I wasn't going mad! I too put on weight and lost it during my time prior to my op then after operation which at moment I'm trying to lose.

I didn't have a choice to stay on medication as I reacted badly to Carbimazole and couldn't stay on TPU long term. Have recently adjusted my Levothyroxine from 75/100mg alternate days to 100 daily to see if it helps with my weight loss.

You have to do what's right for you. I too chose not to have RAI after talking it through with my Endo. I stayed in 2 nights and my calcium dropped the next day hence staying in the 2nd. But after a few months with additional calcium supplements it's now back on track.

It's not an easy road for any of us here and there maybe something after that doesn't behave but I'm glad I had the TT even though I've still got the weight to lose, stop my hair from falling out and a few other things that doesn't help being menopausal either lol.

I hope it all goes well for you

X

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looks like I am hyper with hypo symptons. Before my first blood test I was sure I'm hypo. - gain weight, always sleepy, falling hair like crazy, sweating during sleep at night... horrible... then my surprised face with diagnose that I'm hyper. HOW?!

4 years on carbimazole.... still feeling sleepy, hairs still falling off, I'm on diet of 1400kcal and losing twice as slow that others (in a month 1.8kg only).

My endo said that it's not getting any better with my thyroid levels so have 2 options: or RAI or surgery. Becuase of my job (with people at airport) can't do 4 weeks (or whatever needed) being away from people because I'm radioactive and glowing :P so I choose surgery thinking okay take it off, give me right hormones levels and sorted. but now after reading all those horrors stories on forums... I'm not sure if I'm doing right decision.

On carbimazole I gain 25kg and Im almost in depression.

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I think it's really vital you get a copy of bloods as per Slow Dragon's reply! The carbimazole alone is failing you, and you should not end up getting moved aside into a mental health category of patient. Slow Dragon is absolutely right that removing causes of antibodies (gluten) is a step towards recovery and all her advice is spot on.

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Have you actually discussed your job with the specialist, and been told for how long you would need to avoid your usual role ? Also, (assuming you might prefer RAI, all other things being equal), have you discussed the situation with your employer, to see if they could make 'reasonable adjustments' for a short while - ie find you something productive to do, that won't bring you into quite such close contact with other people ?

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But I dont want RAI

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I agree with your decision not to have RAI. I had no trouble with my operation and regained all of my parathyroids so no calcium problems either. You will probably be put on Levo afterwards and as long as you post your results afterward 6 weeks approx and people on here will help you OK? Don't forget to research the surgeon that's important.

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And not really as I'm working in operational department so not really anyone can do my job there as is just few of us. Secondly cant go off sick for 3-4 weeks without being paid. And government sick pay won't help me sorry.

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If you don’t want it, fine I got the impression you were reconsidering, sorry ;)

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Can you post your last 2 thyroid blood level results?

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Ibdid blood test in december but my gp diesnt have results so need to take from my endo.

In may 2017 I did in private clinic:

Cortisol: 341 (130-580) nmol/L

T3: 4.5 (3.5-6.5) pmol/L

T4: 12.8 (9-25) pmol/L

TSH: 2.4 (0.3-5.5)mIU/L

Latest I have it's from July 2017:

TSH Level: 3.68mlIU/L (0.3-3.94)

Free T4 level: 13.6pmol/L (12.3-20.2)

Free triiodothyronine level: 5.4pmol (3.7-6.7)

With those results I've been on 25mg carbimazole moved to 5mg till today.

Next week got another test results to be up to date before surgery:

Vit D level, Calcium level, full blood d count, urea and electrolytes and thyroid functions

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Your thyroid is suppressed right now and you have no hyper symptoms from what you've described so far. I'd really insist on getting antibodies done too and ferritin, b12 and folate. Ask for a thyroid scan to see if the operation is necessary right now - considering how much of a hassle it's going to be with your job. Also ask them if you have Graves'.

Bear in mind if this is autoimmune you should always have iron, folate and b12 checked. Some of your symptoms could be due to a deficiency in any one of those.

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Everyone with Graves or Hashimoto's is very likely to benefit significantly from gluten free diet

Leaky gut and low vitamins highly likely

Your results suggest mix of Hashimoto's and Graves and it can be difficult to treat. Would suggest trying strictly gluten free diet and getting vitamins tested

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