How much longer??

[yorkylass]

Hi everyone. I was diagnosed with Graves disease Oct 08. I was put on Carbimazole which after 5 months of swinging from hyper to hypo my endo said I was sensitive to it and switched me to PTU.

I've been taking PTU 50mg twice daily for 5 months.

My hair loss has returned, the insomnia, the fatigue, the palpitations, the overheating and anxious feeling.

My endo says my labs are "normal", to keep on the same dose for 18 months and try coming off them hoping for remission, but, I don't feel well any more on this dose, I never have really.

Here's a few labs.

Feb 09  TSH 0.003  (0.38-5.5)
            T4   11.3    (11.5-22.7)
            T3   4.1      (3.5-6.5)

May 09  TSH 0.20
             T4   12.2
             T3    5.1

AUG 09 TSH 0.34
            TSH 13.2
             T3   4.3

Has anyone any clues to why if my labs are "normal" why I don't feel like my endo thinks I ought to feel.
Also, just wondering after being on the same dose of PTU for 5 months, how long does it take for levels to settle and become stable?

Any info would be gratefully recieved
Yorkylass
xx

[yorkylass]

Can I just add that I'm also taking suppliments too. Omega 3,6,9, Vit B complex, Rhodiola Rosia and recently stopped taking 5-HTP for my insomnia as it's giving me vivid night terrors.

TY

[Super_sally888]

Hmmm,

Your tsh is low, but so are your other labs, which could mean you are hypothyroid. Maybe you're on too high a dose of PTU?
I would recommend you get a second opinion, if you can.
Maybe some others would chime in heere.

Have they checked your iron, B12 levels, etc?

[yorkylass]

Hi, thanks for your reply, I'm not aware of any other tests been taken apart from my liver function and that was fine.

[Smilerdeb]

While you have a thyroid and suffer from Graves Disease...your TSH will never 'go up'.
They say it takes years for a TSH to elevate when you have Graves. I found that to be the same in my case ...until I had RAI.
Your levels are low...your FT4 should be mid-high range and your FT3 around 4.4 to 5.0.
I will go as far as to say that you do need a 'decrease' in anti-thyroid meds but in most cases if you just 'stop' the PTU, you run the very high risk of going hyper again within 2-3 weeks.
If you stay on the same dose of PTU for another TWO months , you will become severely Hypo and thats he//.
Try cutting the PTU down to 25mg twice a day (with your Doctors ok) and see how you go on that but to come off PTU completely cold turkey is not the right thing to do.

Your Doc most probably knows that coming off it , you will go hyper then he will reccommend RAI saying your Graves is uncontrollable (thats usually the scenario).
I would be seeing yr Doc/Endo and ask for B & R (block and replace).
This method is widely used in japan where you are kept on an anti-thyroid med but also given a small dose of T4 med to 'balance ' out the seesaw of hyper/hypo.

I would also be asking for the Graves antibodies test to be done (TSI) and see how high your antibodies are.
The higher the antibodies, the less chance of remission.

Not comforting I know...but at least you will know where you stand.....whether you will have to eventually have permanant treatment or whether you can stay on the PTU with a T4 med and have stable levels.

I have been where you are and the see-saw of levels is he// too.

Let us know how you go.


Debs (Graves , Hyperthyroidism & RAI June 2008, TT Sept 2008)

[yorkylass]

Thanks so much for reply, you make alot of sense to me.
My only problem is my gp and my endo are both under the impression that as my T4 and T3 are in range so I should be fit and healthy. I've tried explaining how bad I feel still,but, neither will listen to me.
I'm thinking about finding a private endo in my area to see me.
Suprisingly enough I do find this comforting. Rather than struggle like this for another 18 months with the medical professionals convinced that I should be feeling ok,I'd rather opt for another treatment and actually make some progress.
Thanks very much for taking the time to reply to me deb, I'm feeling so low and helpless it really means alot to me.
Thank You
Yorkylass
xx

[Smilerdeb]

My heart goes out to you Yorkylass....as you are where I was 15 months ago.
I felt that if I had to live with Graves and Hyperthyroidism, anti-thyroid meds, hyper/hypo see-saws that I didnt want life.
Yes...I too, as many others here know just how debilitating and how depressing Graves can be.

I took the option of RAI because of continuously going Hyper which resulted in thyroid storm 3 times in 2 weeks.
I was on anti-thyroid meds for around a year and in that time...it wouldve had to have been the worst year of my life.

I had RAI on 27th June 2008 but a few days prior to RAI...it was found that my whole thyroid was cancerous (both lobes).
S because surgery was too dangerous at the time with sky high levels,,,,,I had RAI then followed with keyhole surgery 3 months later.
I was hypo after 5 weeks with RAI and I would have to honestly say that the past year (even though I have had stress galore) would have to be the best year I have had in 26 years.

I have had my 'ups and downs' with levels, dosage etc but pretty much stable around 4-5 months after RAI.
I went back to work fulltime on a contract and finished up in June this year and am busting to get back into work again.
But have got that on hold due to my best friend being terminally ill.

Yorkylass.......Graves cannot be cured and all the time your levels are on a see-saw, you are putting strain on the heart.
PTU and Carbimazole wont work forever...it never does.
But in the meantime...research all you can on the thyroid and treatments available.
Being on the PTU will 'buy you time'.

I cannot tell you what treatment or what step to take....only know that deep down in my heart, I know I did the right thing and made the right choice.
I dont have 100% of ME back....but I do have 99.9% of the 'Old Me' back and thats damn well good enough for me.

Now if my levels go out of whack...I know how to fix it...I dont run to the Doc everytime.
I dont feel like a walking basket case anymore like I used too.
I dont offend people anymore with my vicious and angry "Graves Rage'.

Research all you can and if you need questions answered...PM me.
Hugs and all the best
Debs xxx

[yorkylass]

Thank you so much for your support.
Your reply holds so much hope, I'm so pleased you've come out the other side.
I know what you mean about my medication just buying time. My mum has Graves and went on meds, she went into remission, but, years later she went hypo and now on levo for life.
All I know is that Carb and PTU are not doing the trick for me, I need to research as you suggest and decide the best way forward, I'm sick of feeling stuck.
I have 3 kids to take care of and find it increasingly hard to manage. All the fun days at the park, visits to the library, swimming etc are gone, I just don't have the energy or the motivation. I look at my kids sometimes and see they're growing so fast, I feel like I'm letting them down. I feel so guilty.
I need to take control and take a step forward, not just for me,but, for all my family.
I think I'll suggest block and replace next time I see my endo. If he doesn't agree and tells me my levels are fine again, I'm going to demand a second opinion.
Once again thanks so much for your support and stay well. Good luck on the job front.
All the best
Diane
xx