questions for gravers in remission

[graveswoman]

Doc won't give RAI, until she sees if i can go into remission. She is going to try and wean me off of PTU, which has been a big factor in my size 6 to size 16 weight gain. But of course not the only contributor. If off PTU and in remission will it be possible to lose weight then? I have never been so depressed and burst out crying at my last appointment. I am so unhappy at this weight, i have become unsocial, bringing home work for an excuse to to do anything outside. nothing fits and refuse to go out and buy anything else at this present size. I am refusing invitations, even with my family, and they don't care what size i am. I just don't feel physically attractive anymore and portray that with my attitude every day. It is impossible to get through the weekend without have a crying breakdown of some sort. I know my emotions are out of whack along with everything else, but come on.... I eat the healthiest out of everyone in my family and still just keep packing it on. Have some form of arthritis in the back, and have working so much, can't find the energy and/or motivation to at least walk. was running when this all started, now can't even walk. please tell me there is hope if i get off meds and go into remission. and what constitutes remission, blood tests have been normal 2 times in a row, but still symptomatic? help, Kim

[graveswoman]

Thanks so much, I guess i shouldn't stop the meds, i will wait until doc says she will radiate, i don't think i will remiss, and then i get the opportunity to say "i told you so" when she does radiate. LOL

great news on weight loss, strange my neighbor is the same as i was put on weight with graves, then once she was radiated she lost it all and then some. she looks awesome. just so frustrating that the docs won't listen, i know what my body is saying, they do not know what it is like to live with the heart flutters and shakiness and ups and downs emotionally. If we want to radiate we should be able too. but do not want to start again, so will listen for 6 more months and then get mean!!!

and yes smilerdeb is awesome and so are the others that are so forthcoming to help everyone (you for example).

thanks for your words and thinking of you and your fight back to what we call normalcy. good luck with the weight loss. let me know of your progress.

Kim

[Eviegee]

Hi

I really feel for you.  I was diagnosed with Graves almost 4 years ago and lost a lot of weight - that was the only good thing about the graves!

I had a goitre and sore throat almost all the time.

I was put on Carbimazole and my weight shot back up to heavier than what I was before the Graves - I got so down about the weight I stopped the Carbimazole and stopped seeing my doc.  I ended up in hospital thinking I was having a heart attack.  It wasn't worth it.

I constantly refused RAI as I'd heard this would mean stacking on more weight.

Eventually I decided to have RAI 13 weeks ago.

My bloods just before RAI were (1st April 2009 - UK Labs):

Free T4 18 (I think that would be 1.8 in your lab)
TSH Not dectectable

19th May 2009

FT4 13
TSH 0.6

30th June 2009

FT4 14
TSH 1.1

They don't check your FT3 in UK very often.

I think that makes me euthyroid. AND, hey I wish I'd done the RAI a long time ago - I feel a lot better and have lost about 9kgs in weight in the past 13 weeks.  I know everyone is different and this affects us all in different ways, but I am here for you if you need me.

Take care and good luck - please don't beat yourself up about the weight - I know I did and it's not easy, but believe me feeling better helps.

Ps isn't Smilerdeb and inspiration?

[Smilerdeb]

Yes Kim.....an form of inflammation can make the throat sore and hoarse.
As for the rash, I think it may be Graves related as I often get an excema type like rash and may have it for days, scratch the he!! out of it then all of a sudden , the next day its gone.
Swollen glands and runny ears sensation is also thyroid related.
I remember my sinus's getting blocked last summer too and had to use a saline nasal spray.
I was also watching a documentary today about female hormones once a woman hits 40 and just how much we need estrogen , T3 and T4.
It was quite interesting as my estrogen level is low due to early menopause.
But I have discussed it with my Doc and hes given me a prescription for cream to rub into my arms every night.
We will see how it works lol.

Anything is possible with the thyroid but I dont have to tell you that lol.
Hugs

[graveswoman]

p.s. i have a goiter, can that make you hoarse and have a sore throat?

no fever.

k

[graveswoman]

never had the antibody test done to  my knowledge, just 24-hour uptake. then they told me i had graves and shortly after told to go see opthamaologist to keep an EYE on GED.

So when i see her in september i will ask her. The doctor i had last and her both have the same opinions, kinda scarrry that i read conflicting stuff on internet to their responses to me. they said my missed periods ( have had a total of 7) is not due to graves or ptu, but everything on internet suggests it is? there are other examples as well. they say not from graves when everything on the internet says otherwise. either i stop reading internet or stop going to a doctor LOL!! or get them to read the internet LOL!!

I had another question as well, lately i have woken up with a bruise on my body and have had these small red marks that itch at first and appear rash like, then the next day they hurt and linger for weeks or days depending. I have also had a mild sore throat for a couple of weeks now and hoarseness when the throat gets sore. that comes and goes as well. From meds? the time of year? oh yeah also swollen glands pop up intermittently on the neck up. i will get rid of one and another will appear? I had just gotten rid of one (a whopper) in the back of my head before doc appointment and of course the next day got another over the ear, so they didn't say anything wrong. did you have any of these?

thanks kim

[graveswoman]

Thanks you guys, I am so glad i have all of you to help me, as you know docs are too busy with more than just one patient to be of any comfort these days.

I am trying not to get too upset but I just get overwhelmed about it, and the flood gates open. It is uncontrollable, my husband doesn't know what to do for me, and just sits and listens. He wants his wife back, I want me back.

thanks for ALL of your advice, very comforting.

Kim

[Smilerdeb]

sorry...bumping up ...means I bumped up yr posting so it didnt get lost on page 2 lol

[Smilerdeb]

I stacked the weight on being on Carbimazole (16kgs) but when I think back, I used to go to anorexic looking to obese looking for no reason at all.
I put this down to Graves as my daughter is now going through the same thing.
And is in the process of getting labs done.

You are supposed to 'wean ' off the antithyroid meds...not just stop them so dont think of doing that.
But if you have Graves then I guarantee you that within 2 weeks of stopping the meds, you will be hyper.
Thats why I said for the Doc to test you every 4-6 weeks.
Get some empty lab forms from her.....
Because if you go hyper, you are at severe risk of thyroid storm.
Worry about the weight later Kim...that will come off when its ready too (like it did me) and I'd rather be alive than worry about weight.
Yes I know where yr coming from...I was like a blob :(
I'm not too bad now though..I've lost roughly 10kgs after RAI.
i fluctuate a kilogram here and there but that doesnt worry me.

Dont do what I did Kim.....dont make yourself sick and depressed over your weight.
The weight business can be dealt with later.
Deal with the thyroid FIRST.
Here is info on the tests:

http://graves.medshelf.org/Lab_Tests

[tm514]

TSH in the 2s seems a little high to me - I know it is "normal" but as a Graves patient who has had a TT, when my TSH is above .7 or .8 I feel like **** and start packing on the pounds.

Thinking about it, it might be a good idea to come off the PTU to see if you feel any better.  It might be controlling your thyroid function a little too well.

I was on methimazole for a year prior to my TT, my doc tried to wean me off of it, and I was off it for about 2 weeks totally before the hyper symptoms kicked back in.  So, I went back on at a small dosage (5 mg one day, 10mg the next - try keeping that straight with brain fog!).

I must say, I feel much better off the anti-thyroid meds than I ever did on them (although I have to admit they did do what they were supposed to, at least all of the physical symptoms were controlled on them).  I didn't like how emotional I was while on them - not sure if that was a side effect of the drug or just Graves in general.  

I have been where you are.  I feel for you, but life does get better after permanent treatment.

I wish you the best.

[graveswoman]

feb 27
T3 Uptake 29 (22-25%)
T4 Free 1.2 (0.8-1.8)
Tsh (3rd gen) 2.52 (0.4-4.5)

6/16
T3, Total 156 (97-219)
T4 Free 1.3 (0.8-1.8)
Tsh (3rd gen) 2.22 (0.4-4.5)

I am not sure if i have ever had a antibodies test? what is it called, i will look it up, i only remember having an ultrasound and uptake scan done (88% positive)

She has told me that she would definitely do RAI in December if I am not becoming eurothyroid. but it is the hospital departments theory that most will remiss in 1.5 years. if not then RAI will be discussed. Like i said, would have to start over again, around here another appointment will be 3-6 months to see new patient. So sort of stuck here. I will live with the racing heart, anxiety and heat intolerance and everything that goes with it, the thing that i cannot live with is the weight gain. I think it stems from my Mom being at least 280 lbs and heavy my whole life. I see how terribly unhappy she is and I just don't want to go there. I would seriously consider going off meds if i thought i would lose weight, but before diagnosed started gaining without the meds they are just adding to the weight gain.

I did tell her i was unhappy about not having RAI or being on meds still so she has me taking another blood test in august then again mid september to see if i can cut back on meds. crossing my fingers to cut back.

what does bumping up mean?...........

thanks Kim

[Smilerdeb]

bumping up...............

[Smilerdeb]

Remission is where the Graves antibodies are under <30 usually.
Remission is not just getting your levels stable.
You can have stable levels and still have a high antibodies titer.
Then in 99% of cases with Graves, remission lasts for only a short while and then back on the rollercoaster again with levels etc.
It could be weeks, months or years that it takes to flare up again but in all honesty, once you have Graves antibodies...they are there for life.

If you are still symptomatic, you are not EUTHROID and thats what remission is.
No-one can predict whether you will go into remission...just as no-one can predict that you wont.
I think that if you continue to see this Doctor then you are going to have to go off the meds (anti-thyroid) but also ask her if she is prepared to lab test you every 6 weeks ..NOT every 6 months.

If you was euthroid now, you wouldnt feel the way that you do.
You say you have had the last 2 labs come back as 'normal'.
Clarify normal.
Normal for you or normal for her?
Post your ranges if you can.


Ask for another Graves antibody test and this will show you just where you are at with the Graves. if it is significantly raised then I would be getting a 2nd opinion.

No-one wants to see you have RAI unneccessarily but the rollercoaster has to end sometime. If she is serious about trying for remission then maybe explain that you will come off the mmeds but if you go hyper IN ANY WAY, that you want RAI scheduled.

And to be perfectly honest and frank with you, could you handle all this all over again if you DID go into remission and then come out of remission?

These are the questions you have to ask yourself.
Do you want to give it that last shot and wait and see what happens or tell her that you arent prepared to stay on this rollercoaster.

Hugs to you...it must be so hard as I remember going through the same as you and it was he!!. xxx