Thyroidectmy

[Lenya21]

I want to ask a question but not sure if I'm doing it right. I will have my 1st anniversary of being type1 in April. I have had medication for an overactive thyroid the last 4-5 weeks. This was stopped the other day as the medication was affecting my liver badly. I have been told radiation will not be good for me as the beta blockers I would have to take masks hypos. My best option is to have my thyroid out within the next week. Can anyone relate???



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[catherinecherub]

Hi Lenya,

I'll bump your post up for a reply..

 

[Poggle19102]

Hi lenya
What medication were you on? I was diagnosed with Graves' disease (hyperactive thyroid affecting other organs) I was on carbimozole for around 18months until my total thyroidectomy December 2013. My liver tests ( LFT) were always abnormal and had high levels of damage but not failure thankfully.. GAD tests carried out last June and I was diagnosed type 1.

 

[Lenya21]

Yes I was on carbimozole, I have had to go back on it at a lower dose as I can get sick again without it. That means I would not be able to have surgery. So on a lower dose, still not doing my liver any good and I been booked in for 13 May for surgery. How have you been since your surgery? Did u have any issues or recovery problems? Thanks for your reply :0)


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[Lenya21]

You had thyroid problems before being type1, may I ask how old u r?


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[Lenya21]

Forget that last question. I saw on another thread your 49 when diagnosed. I was 52 and they continue to look at me like its impossible. Yet I they read up on it they would know it can come on at any age . :0)


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[julie56]

Hi Lenya21 I was diagnosed with Graves disease in my thirties and reacted badly to carbimazole so was switched to propylthiouracil which worked much better for me. Eventually I had the radio-active iodine treatment about 8 years later and haven't had to take any medication for my thyroid since then. I do know people who have had a thyroidectomy and have managed very well since on thyroxine and the scar is barely visible when it heals. Wish you well.

 

[Totto]

There is also PTU if you can´t tolerate carbimazole.

If there is any possibility at all you can keep your thyroid, do so.

What were your FT3 and FT4 readings?

 

[Poggle19102]

Hi again
Are you having a total thyroidectomy? Due to thyroid eye disease I was not able to have radio iodine therapy. I had a few issues after surgery but now am much better and am doing well on levothyroxine. Struggling somewhat with my diabetes but will get there. This site is a god send and everyone is so helpful. If you would like or need a chat PM me

 

[Lenya21]

Thanks everyone, I am not sure what my ft3and ft4 readings were but I know all results were not good as the pre op dr that I saw the other day also remarked that things can't go on as they are. She assured me I will feel much better after it's removed.


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[Lenya21]

And yes poggle a total thyroidectomy.


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[Bingaboo]

Hi Lenya21
I was diagnosed with Graves Disease when I was about 13 and eventually had my thyroid removed at 21, this changed my life totally for the better. I am now on a level dose of thyroxine and have a faint scar on my neck but if I had to I would have the op again. I have my levels checked every 6 months ish but apart from being diagnosed T1 2 years ago (am now 35) have had no further complications. If you have any questions just ask. x

 

[Indy51]

Sean Croxton of Underground Wellness has a free online summit starting called "The Thyroid Sessions". As with most online summits, you can buy the whole thing, or you have 24-48 hours to watch the interviews free of charge. I've watched a couple of the advance sessions and there seems to be some really good information in them. The link if you want to sign up to watch is:

http://thethyroidsessions.com/

 

[Anie]

I had a partial thyroidectomy at 25 and have been on thyroxine ever since. Not had any problems with medication. Do be aware that if/when you have the op, there is LOTS of bruising an swelling, not a pleasant sight for a time. However this goes and the scar is hardly visible. Good luck.

Interestingly my dn commented on how many patient she had that had thyroid problems!

 

[Lenya21]

Thanks everyone. Everything you have told me seems very positive. Once I get over the "nerves" I'm sure it will be good for my diabetes control as well. Counting the days down to the 13th. ( bit of a chicken :0(


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[Totto]

Are you on PTU now as you couldn't tolerate Carbimozole? If not, why doesn't your endo want you to try it?

 

[phoenix]

I had a word with a friend who had also had a total thyroidectomy, she is very happy with the result. She did have discomfort after the operation and she wore a scarf for sometime and still does as I think she got to like the effect but the scar is insignificant now.( she has some very glam ones and wears them very stylishly, )
She actually only takes 25mcg more thryoxine than I do with an 'intact' but atrophied thyroid.

Re Totos question, I looked up the drug that she mentions.
It has a warning about the risk of liver damage and it is reserved for those who 'cannot tolerate methimazole and in whom radioactive iodine therapy or surgery are not appropriate treatments for the management of hyperthyroidism'
http://www.fda.gov/safety/medwatch/safetyinformation/ucm209256.htm
In your case surgery is possible thus avoiding what sounds like a possible out of the frying pan into the fire scenario.

 

[Totto]

Really, if you can go through Grave´s and into remission with your thyroid intact it means your chances of having a perfectly well-functioning thyroid for the remainder of you life is great, instead of having to rely on Levo and believe me, not everyone do well on Levo. The poor girl has only been diagnosed a few weeks so I feel it is far too early to give up completely and take the whole gland out.

 

[Lenya21]

I checked my dates and it's actually been around nine weeks. Time flys. I was told I had been given the safest of the two drugs for your liver. If I have the radiation to see if they can stabelize my thyroid I will run the risk of not feeling hypos. And still I may then end up with an under active thyroid, I feel in my gut I'm doing the right thing. Just a bit scared. Thanks all for your replies x


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