Re: Graves Swings, a bit bonkers!

[Guest guest]

Hi

Sorry i cannot help with any advice or personal experience, but wanted to say

i'm sorry you're suffering like this. I hope someone will reply with some info

which helps you soon

chris

>

> Hi

>

> Happy New Year one and all. I just wanted to apologise to those lovely fellow

Graves patients who have emailed me off forum. I'm really sorry I've not got

back to you, I've been a bit all over the show.

>

[Guest guest]

Hi ,

Nice to hear from you again. I wondered where you'd disappeared to! Happy New

Year to you.

Well done for giving up smoking. I used to smoke and it took me years to

properly give up but no doubt worth all the efforts. You seem to trust you Endo

so may be he is right and you need to be a bit more patient. If you've given up

smoking and had a cold, it is not surprising that you're feeling down.

Loosing hair - I lost my hair quite a bit over the past few months and was very

worried. The endo & GP assured me it would get better, that it was a reaction

to the hyperthyroidism episode etc..apparently it takes three months for your

hair to fall after a stressful period...the good news is that my hair appears to

have stopped falling (for now) so there might be a point about being patient

(within reason!).

All the best!

>

> Hi

>

> Happy New Year one and all. I just wanted to apologise to those lovely fellow

Graves patients who have emailed me off forum. I'm really sorry I've not got

back to you, I've been a bit all over the show.

>

> To recap, my brilliant endo reckons that I won't tolerate surgery, synthetic

hormones or RAI so he's encouraging me to stick with ATDs and a very gradual

triation as my body really hates any kind of biochemical shift and they need to

go gently to bring me under control. He says there's no reason why I can't stay

on very low dose ATDs for ten or twenty years once I'm stable.

>

[Guest guest]

Hi

Thanks for posting and hope you are doing OK? Blood

results are in, just waiting for the GP to look them over and then the

receptionist might let me have them (they were in yesterday, but she wouldn’t

give them to me, so annoying). I suspect I’ve had a hyper spike and I’m

expecting my levels to be up. I’m hoping my endo will tell me its just a

blip and to keep soldiering on. How are you doing on ATDs now, have they

successfully got you on a maintenance dose? Are you back in normal range? How

do you feel?

Good news is I was seen at the eye hospital yesterday

for my TED and they are very happy with my improvement, which is almost

entirely down to stopping smoking!

Best wishes

X

PS thanks for the reassurance on the hair!!

Hi ,

Nice to hear from you again. I wondered where you'd disappeared to! Happy New

Year to you.

Well done for giving up smoking. I used to smoke and it took me years to

properly give up but no doubt worth all the efforts. You seem to trust you Endo

so may be he is right and you need to be a bit more patient. If you've given up

smoking and had a cold, it is not surprising that you're feeling down.

Freelance Fundraiser & Copywriter

07810 783 337

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[Guest guest]

Hi ,

 

Your email sounds more upbeat and I hope you are feeling better now.

 

Don't know if you remember me.  I asked about radiodine solution question just over a month ago and you sent me a very helpful reply about it's possible to try ATD again.  I also saw the endo specialist nurse this afternoon.  My T3 is now 10 and T4 22 (came down from 34.5 and 42.2 in Nov.)   Thanks to you and a few other's emails, I have done a lot of research and read up on Greave’s and autoimmune disorders. 

 

I have been only taking 5mg Carbomazole per day and sometimes none.  I am on a health eating regime, a raw carrot, celery stick and handful of broccoli + Vitamins C, B and minerals such as Calcium, Magnesium and Zinc and fatty acids like evening primrose oil and cod liver oil.  I also drink bugleweed and lemon balm tincture water mixture twice a day.  I haven't been using any non-stick pans or aluminium cookware in the last few weeks.   I am feeling well although still not fit enough to go back to the gym.  This has been confirmed by the blood test result and I am so happy. 

 

I saw your results today.  My T3 and T4 are both higher than yours but I am sure they will come down.  I think our mental state seems to have something to do with how we then feel.  After receiving a few replies from this forum, I have taken on board the advice, and have been feeling very positive and mindful about how I feel and symptom changes, etc.  I hope you will continue feeling positive after seeing your endo and will be eating healthy.  I believe you will be fine.   

 

Just remembered - having a cold do make us feel unwell.  My palpitation came back three days ago when I had a mild cold.  Have said that, I am not sure the mild cold is a mild cold or part of Greave's symptom.

 

Best wishes.

 

Donna

 

On 3 January 2011 14:50, beccajeanturner <rebecca@...> wrote:

 

Hi Happy New Year one and all. I just wanted to apologise to those lovely fellow Graves patients who have emailed me off forum. I'm really sorry I've not got back to you, I've been a bit all over the show.

To recap, my brilliant endo reckons that I won't tolerate surgery, synthetic hormones or RAI so he's encouraging me to stick with ATDs and a very gradual triation as my body really hates any kind of biochemical shift and they need to go gently to bring me under control. He says there's no reason why I can't stay on very low dose ATDs for ten or twenty years once I'm stable.

I've been on ATDs for nearly six months now. To be truthful I'm starting to feel INSANE. I'm very, very tearful, and I just feel anxious, insecure, and scared. I'm trying to keep up my normal life but I'm so tired, I got the flu, we got snowed in and then it was Xmas and I feel a bit isolated, like I've been in some weird parallel dimension for a few weeks. I'm also a bit chubby now and losing my hair, which is hard.

i've also quit smoking - nearly six weeks - so that is probably having an effect too.Have emailed the endo who has told me to go and get a test (I think I'm going hyper again, fairly certain in fact, despite high dose ATDs)and we'll see where I'm at. I was just outside normal range 3 weeks ago, which he said was biochemically about right as my body will be used to being a bit 'up'. He also keeps telling me not to panic, that he's not too worried and all will be well.

I suppose what I'm asking for here is a little reassurance. Has anyone else been through this, is it 'normal'? I just feel like I could do with a big hug and someone to rub my back and tell me its all going to be OK.

Yours (on a desk cluttered with soggy kleenex)x

[Guest guest]

Hi Donna,

Glad you are feeling better and your levels are coming down. The fact that

you're taking 5 mg CBZ kinda backs up what the American sites say -- a little is

as good as a lot, with a lot less side effects.

One thing though, they also say it has to be taken EVERY DAY until you're levels

are in range again for it to effectively dampen the effect of the antibodies so

you

just might find even better results next time if you try that.

Elaine swears by Bugleweed and Lemon Balm for Graves on her site, I tried

lemon balm when I was hyper and it did help with symptoms. L-Carnitine is also

good. The missing link to you feeling really good might be taking the CBZ every

day.

Love Tess

>

> Hi ,

>

>

>

> Your email sounds more upbeat and I hope you are feeling better now.

>

>

>

> Don't know if you remember me. I asked about radiodine solution

> question just over a month ago and you sent me a very helpful reply

> about it's possible to try ATD again. I also saw the endo specialist nurse

> this afternoon. My T3 is now 10 and T4 22 (came down from 34.5 and 42.2 in

> Nov.) Thanks to you and a few other's emails, I have done a lot of

> research and read up on Greave's and autoimmune disorders.

>

>

>

> I have been only taking 5mg Carbomazole per day and sometimes none. I am on

> a health eating regime, a raw carrot, celery stick and handful of broccoli +

> Vitamins C, B and minerals such as Calcium, Magnesium and Zinc and fatty

> acids like evening primrose oil and cod liver oil. I also drink bugleweed

> and lemon balm tincture water mixture twice a day. > >

> >

> >

>

[Guest guest]

Dear Tess,

Thanks for the helpful feedback.  I will take the advice on board and starts today.  Thank you.

Love,Donna

On 7 January 2011 15:59, tessfleming23@... <tessfleming@...> wrote:

 

Glad you are feeling better and your levels are coming down. The fact that you're taking 5 mg CBZ kinda backs up what the American sites say -- a little is as good as a lot, with a lot less side effects.One thing though, they also say it has to be taken EVERY DAY until you're levels are in range again for it to effectively dampen the effect of the antibodies so you just might find even better results next time if you try that.

Elaine swears by Bugleweed and Lemon Balm for Graves on her site, I tried lemon balm when I was hyper and it did help with symptoms. L-Carnitine is alsogood. The missing link to you feeling really good might be taking the CBZ every day.