# Endo Gave Me 4 Options - hope i have choosen the right one?



## Morrello (May 10, 2011)

I saw my endo yesterday and had a really long chat about everything - as my lab results are going in the wrong direction each month:
TSH 0.01 ( 0.35 - 3.50)
Free T4 - 33 ( 8-21)
free T3 - 10.4 (3.8 -6.0)

i had until today to make a choice of what to do:

1) RAI at the end of the week

2) Removal of Thyroid - but as it is too bad now apparently no surgeon will touch me as too dangerous without me having a three month course of iodine

3) Take carbimozale again ( i had a bad reaction to it before - but it may have been because i was so stressed out and working nights in a pyschiatric unit)
4
) Sit on my hands and do nothing risking become seriously ill within the year or possibly death.

The lesser evil at the moment seems to me to take the Carbimozale and try to stabilise myself so i can really make the best choice - i have a son with a range of nerological disorders to consider if i had the RAI.

I am now on 40mg per day - take the whole lot in one go before bed rather than splitting - had my first decent nights sleep for months alst night - maybe not because of the meds but maybe because i have stopped worrying.

Endo has blamed my inability to make a decision on having too much information - she said that years ahgo she would have just sent me for RAI without consulting me but laws have changed meaning it has to be my decision - i can see her point but surely an informed decision is better?

I just hope im doing the right thing - have a big holiday to think of in August - 14 hour flight so want to feel better for that also.


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## RobW (Feb 20, 2011)

Is Carbimozale the same as methimazole? RAI isn't recommended if you're around younger kids, so that's definitely something to consider (at least from what I've read) and I've also read that a lot of people regret having their thyroid removed as well. Perhaps your best choice is to stay on methimazole until you stabilize - but how long have you been on it? It took me several months before the endo could see results from the methimazole dosage he was giving me.. started out at 40mg or 60mg until I started getting bad muscle cramps, then he knocked it down to 20mg and I've been on it since..

Alternatively you could also seek another opinion from another endo.. something to think about if possible I guess..


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## Andros (Aug 26, 2009)

Morrello said:


> I saw my endo yesterday and had a really long chat about everything - as my lab results are going in the wrong direction each month:
> TSH 0.01 ( 0.35 - 3.50)
> Free T4 - 33 ( 8-21)
> free T3 - 10.4 (3.8 -6.0)
> ...


And it should be your decision. Splitting your dose may not be wise as antithyroid meds have a short half-life of only a few hours. Did your doc tell you to do what you are doing?

I think that you have made the right decision based on your circumstances. You "know" what you can do and can't do.

Please let us know how you are doing.


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## bigfoot (May 13, 2011)

Morrello said:


> Endo has blamed my inability to make a decision on having too much information - she said that years ahgo she would have just sent me for RAI without consulting me but laws have changed meaning it has to be my decision - i can see her point but surely an informed decision is better?


Wow, how nice of her. I wonder how she would feel if the roles were reversed?

:aim33:


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## Morrello (May 10, 2011)

Hi - yes Carbimozale is the same medicine. My family doctor rang me last night to go over everything - she said this is most extroidinary as in all my years as a doctor i have never known the hospital to get a written reply to the surgery within a day until now.

Told doc what i was doing and she said yes i must take it all at once...only last night on the third dose have i actually felt anything - got bit of a sore throat and stiff neck and feel generally out of sorts and could not sleep for hours ( took medicine at 8pm went to bed unsually late at 1.30 am fell asleep around 4am) - was laying there crying, dont know if it was relief or the medicne screwing me up or what - all i know is i was willing this disease out of me - no infact demanding it get out!

I guess at times we all come to the end of out tether over this - im most angry because of the upset it is causing my family and friends through worry.

My father was offered RAI for his prostate cancer but he also declined it ( but did not say a thing until after i had made my decision as he didnt want to make it any harder) he told me yesterday he was glad i had decided not to do it - my mum wants me to have the sugery and be rid of it forever so i can get on with my life. My sister is a dermatologist and lectures dermatology - she thinks i should also have the op and thinks it is what she would do - her opinion is to stabilise myself and get in good shape and go for it.

I have got a natural and charity run healing place close to my home - infact i didnt know it was there until i had to deliver something to them - a huge place, wind chimes lining the driveway with relaxing swimming pools, a chapel for any religion and lots of yoga etc classes - never really thought of doing this before now but just might give it a try to see how i get on - they say it is mainly to help people with stress in their lives - theres no catch either and has a registered charity number.

I hope i can find some peace within myself so i have a valid chance to advise someone else to try the same approach.


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## Andros (Aug 26, 2009)

Morrello said:


> Hi - yes Carbimozale is the same medicine. My family doctor rang me last night to go over everything - she said this is most extroidinary as in all my years as a doctor i have never known the hospital to get a written reply to the surgery within a day until now.
> 
> Told doc what i was doing and she said yes i must take it all at once...only last night on the thrid dose have i actually felt anything - got bit of a sore throat and stiff neck and feel generally out of sorts and could not sleep for hours ( took medicine at 8pm went to bed unsually late at 1.30 am fell asleep around 4am) - was alying there crying, dont know if it was relief or the medicne scewing me up or what - all i know is i was willing these disease out of me - no infact demanding it get out!
> 
> ...


Okay; as long as those are the doctor's instructions. LOL!!

Anyway.................sure, try that. Inner peace goes a long ways towards healing.

Please stick around; I know we all will want to know how you are doing.


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## Morrello (May 10, 2011)

I just got the letter from the Endo to my doctor and copied to me, the most important parts are:

After a long consultation discussing the pros and cons of varoius options im very worried that at the moment she is sittings on her hand as she seems rather paralysed by all the information around her. 
Her thyroid function is gradually deterioting so that her T4 level has nearly doubled in the last couple of months. I have warned her in no uncertain terms that untreeated thyrotoxicosis carries its on morbidity and indeed mortality.

Her options would be to re start Carbimoale at dose of 40mg. I would recommend now as her blood test is so much worse, although she can probably get away without adding a beta blocker, bearing in mind her examinations findings today. The next option would be RAI which can be arranged at short notice and she woulsd be a good candidate providng a permanent much needed solution or finally to proceed with surgery.

When she entered the room today she asked about infra axillary approaches to the thyroid which she had heard about in America but not able here in the UK. However, there are some excellent surgeons who would be happy to asist following their insistance on pre op iodine blockade as she has untreated thyrotoxicosis.

I hav sugggested she goes away and speaks to family and friends with a promise to let me know what her decision is.


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## Andros (Aug 26, 2009)

Morrello said:


> I just got the letter from the Endo to my doctor and copied to me, the most important parts are:
> 
> After a long consultation discussing the pros and cons of varoius options im very worried that at the moment she is sittings on her hand as she seems rather paralysed by all the information around her.
> Her thyroid function is gradually deterioting so that her T4 level has nearly doubled in the last couple of months. I have warned her in no uncertain terms that untreeated thyrotoxicosis carries its on morbidity and indeed mortality.
> ...


Yes; well .........................the good doc has to cover his/her butt and put it on record that you have been apprised to the situation and it's possible negative ramifications.

If you have a thyroid storm, it's all over with and if the doctor did not make you aware of that there could be finger pointing.

Thyroid Storm Symptoms
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437

Thyrotoxicosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1026262/


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## Morrello (May 10, 2011)

Hi - yes exactly what i thought - the only good thing is it is easier to digest when written particularly about yourself as far as im concerned - also it was easier to show to my family so they could finally understand what this is all about.

My grandmother suffered the same in older life took the RAI but wasnt too successful for her.

Im starting to suffer again with the carbimozale - really sick and stomach pains, tight neck and very sore inner ears radiating from the back of my head like a low headache. Exhausted but cannot sleep either. I am going to stick with it though and hope this all clears up in the long run.


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