graves Disease

[jas08]

Hi guys,
I have been told that my medications are not working as well and that i have to undergo some radiation thing to kill the thyroid. I am hoping i can talk the royal brisbane out of it i dont want to have to take hormone therpy for the rest of my life.
My medication is neomercial and inderal for my hear.
HellRazeD - congradulations on your pregnancy. Hugs that it couldnt of been smoother. Bubs are resilent things.

[~mamaspice~]

Jas, Who do you see at the Royal?

[HellRazeD]

Thankyou for the Hugs. My mumma came round today, and I had a big cry and prayer session about it. I feel OK now. I have to believe that (ok getting religious for a second) that God made Doctors for a reason, and at this point, He wants me to utilize His gift of medicine to heal both me and the baby. So far, she is very strong. I just have to keep praying she stays that way.

As for the Inderal, the need for that will go once the thyroid settles a bit (or the symptoms do anyway), so focus on that more than the fact that you are on a heart med. The inderal is to control SYMPTOMS, not DISEASE. Like taking Maxalon, it is to control the symptoms only. You still need it, but some other people do not.

The neomercazole, however, is to combat the DISEASE. Like when they give you antibiotics to get rid of an infection. It is the one you need to have until the thyroid is healed. Npt just until the symptoms go, but until Dr is satisfied that the thyroid has settled. Neomercazole is what I am on. Same thing, little pinkish pills? They are effective, but often need massive jumps in dosages to do so. Like I said, sixteen of the blasted things. My endo has teamed it with Prednisolone to potentiate it. Try asking about that, it has halved my need for the neo so far. PTU is the other big one, it is generally preferable, especially in pregnancy, but there are debated as to whether it is as effective as Neo. Generally, it is faster-acting on SERUM levels of T3 and T4, but not as completely effective (i.e, less people have their bloods return to normal within 6 months while on it) as Neo. Neo can take 3-4 months to convert serum levels to normal, but there is a more dramatic drop when it begins to do so, and the symptoms often disappear faster. Both medications put you at risk of neutropaenia, over-suppression of the thyroid, and a host of other complications. There is a greater risk of these the longer you are on them.

As for the RAI, I am not sure how I would feel about being unable to touch another human for 14 days, especially my kids, and I would most certainly not want to go home like that. As a nurse, I feel if that is the case, then they can keep me there in a single room thank you very much. Less chance I would forget and hug someone. The final option is a thyroidectomy, which essentially "cures" the disease, and will place you on Thyroxine every day for the rest of your life. This is actually a fairly good option, but is not without risks either. There is the risk of infection, damage to the larynx and trachaea, and of course, carrying a scar around forever. Both the surgery and RAI require thyroxine after. Forever.

No matter what, ask your dr for ALL the information, and settle for nothing less. I see patients who are underinformed, and even misinformed, so often, and it makes my blood boil. But, ultimately the decision rests with you. Not them, YOU. Do NOT let them pressure you into something you are not comfortable with, if there is another suitable option, no matter how temporary they believe the solution to be. It is YOUR body!

Serene

[jas08]

well my levels seem to have nearly come back to normal - cross fingers because the main one is still high which can make the rest go back up to match it. Hope not because i really dont want radiation. Havent had my appointment at the royal yet. Still waiting for my appointment slip.

[~mamaspice~]

Jas I used to see DR Robin Mortimer. He is basically the top Endo in QLD. He has a private practice at the RBWH, and even though it is a private practice he bulk bills (rare I know!). The way to get into him is to get your GP to write a referal. There is basically no waiting because it's private.

Well I have made a decision. The endo's here at the Gold Coast hospital were suggesting RAI for me but I'm taking Dr Mortimers suggestion and having a total thyroidectomy instead. I have seen the surgeon and this monday I have an appt with an Ear Nose & Throat specialist as they need to check that my vocal chord nerve is in the normal spot (to reduce the risk of damage during the OP). Looks like the OP will be done and dusted some time within the next 3 months. eeek!

[soniebon]

Another graves sufferer here,i had a total thyroidectomy due to graves disease and let me tell ya it wasnt a nice operation to have,if your thyroid can be cured by RAI i would definately give that a go before surgery unless like me the RAI failed and i got worse,if you do have your thyroid removed you should wait 6-12 months b4 TTC as you still carry anitbodies over to your baby,mines been 2 years and i still have antibodies and myself and baby need to be monitored constantly,my levels are always all over the place taking the thyroxine,i gained a lot of weight but im now finally normal and healthy after a long time and i dont regret getting it removed but suffer a lot with pituatary problems which affect hormones and ability to conceive in some people...My advice try anything and if all else fails then have surgery,i have a small scar and cant notice..
good luck

[~mamaspice~]

Hi Sonibon,

I had graves whilst pregnant with my little girl, however my pregnancy pretty much suppressed it (I only had to take half a PTU per day) so there was very little antibodies passing the placenta. Charli was born fine
My endo told me I can pretty much start TTC after the operation. The reason I am not having RAI is #1 - I have a large goitre & #2 my endo has told me I will probably need 2 doses of RAI for it to work which would significantly put my TTC plans on hold.
I have been told that with having a total thyroidectomy the amount of antibodies should be minimal.

[jas08]

Spice - i hope that your operation is a sucess and that you can ttc again soon.
soniebon - glad to hear that your surgery worked and that your levels and stuff are really back to normal.
i had graves threw my last pregnancy as well. it was only finally diagnoed after my son was born. the birth made it worse though, sometimes i feel like a chestist shop with the neomecial and stuff. i am hoping that all my levels are good next visit then i can slow start the reduce the number of tablets i have to take in one day. my body scars horrid and even a little scar would be very noticable.

[soniebon]

Good luck spice,sounds by having yours removed your doing the right thing,it can be a long drawn out process that gives u the shytts,i think cos mine was undiagnosed for so long and the fact they found cancerous cells forming around the thyroid is why the RAI also didnt work,i actually got worse after,cant fathom though 2 years on and im still carrying pretty high anitbodies???wonder if my age has anything to do with it,im now on 150mg of thyroxine,i was on 100 but endo wanted me to up my dose cos was a tad under now in 2nd trimester ur metabolism speeds up so wonder if i will be on overdrive again??
good luck to all the ladies with graves disease and hope ur all fixed up soon,wahtever it takes!!!

[HellRazeD]

Hello all my BabyBelly Family!
Just an update. I had my 27 wk check today (I get one every week cos of the erm...interesting mix of diseases I have), and WOOHOO My T3 and T4 have been normal for 3 weeks! I have been given the OK to STOP the Neomercazole! From 16 pills to none! How cool is that! We are also celebrating because I made it to 26 weeks both with a live foetus, and without either going into early labour or needing to deliver! Baby is healthy, and we have made another milestone!
We are so happy right now, after so many warnings from the doc that bub would probably not make it past 16 wks, and that if she did, she would probably need to be delivered by now, to make it past that magical number is incredible. I want to thank all of you for your support, and to encourage you all that a successful pregnancy is indeed possible with Graves Disease. I wish you all the best.

Virtual drinks on me!

[jas08]

Woohoo HellRazeD Great news for you. Glad to hear your bubs is still happliy playing in the belly. Another bit of great news is that you are now in the final trimester. Cant believe your tablets went down so quickly, yay for no more tablets thow.
Sonniebon - Hope your thyroid doesnt speed up again. I didnt know they could do that once they were removed. Hope you are having a great pregnancy as well.

[~mamaspice~]

Yay Hellrazed! Thats fabulous news! Sounds like your preg might have finally decided to suppress the graves for you too. . .

Jas, my graves flared up after I delivered as well. It is very common for it to do that.

Soniebon, very lucky your thyroid was whipped out. Yes I think I am making the right decision for me having surgery. I've had graves for about 5 years and it's a lot safer for your body to be on thyroxine for the rest of your life than to be on propylthiouracil or neomercazole for a long period as they can cause liver damage long term and also compromise your white blood cell count. Good luck with your pregnancy.

[HellRazeD]

...And lets not forget the lovely bit about reducing bone density prematurely, eroding dentine in the mouth, kidney issues, Nausea and all the other lovely chronic side fx of neo and PTU! Hope it all goes well with your op Spice. Chin up. We'll all be on the virtual sidelines cheering for you!

BTW, Its interesting just how much more Squishy is moving now that Im off the neo... She is going off like a black belt! Methinks I might have yet another Karate Kid on my hands! That makes 4 of us!


WOO WOO WOO
*does cheerleading dance for Spice*

[~mamaspice~]

Aww,thanks HellRazed And good to hear that squishy is moving round lots and lots.

BTW, I saw the ENT Specialist yesterday and had a camera put up my nose and down my throat to check that my vocal chords are in the right spot for the OP. The Dr was HOT!!! Pitty there were 3 med students in the room with us just kidding . . .
It was very interresting seeing the inside of my throat and my vocal chords on the screen

[Bathsheba]

Hi girls... I've posted in other threads about my hyper thyroid condition... must have missed this one.

Endo is still "out" as to whether i have Graves or Post Partum. I was diagnosed last summer... was thyrotoxic with one level 47 (the one that should be between 10 - 19). I ws put on beta blockers and PTU. After about 6 weeks on PTU I started gaining weight and all my symptoms were kinda reversing. I had a blood test and it showed a normal result (13)... so my Endo said to just take half a tablet a day... well I did that for a while but I started to feel really crappy... mainly from stomach bloating (I usually have a flat tummy)... so i was naughty and stopped taking it altogether... my Endo was really annoyed but said that it was really suprising that my levels had gone back to normal so quickly so said i could stay off the PTU for another month... then have a blood test... well I've just had the test and it showed that my level is now slightly above normal (22) so i'm back on half a tablet... the bloatedness hasn't come back yet. My Endo was again really suprised that my levels weren't alot higher.

The thing is I'm still BFing and from what i have read this can affect the test results. Does anyone know anything about this? Do you think this sounds like Graves? or Post Partum?

[Bathsheba]

Double post ...deleted)

[HellRazeD]

I think a bit more like PP than Graves... Mainly because it went back to normal so fast, even w/o the meds. PP tends to fluctuate more quickly than Graves too... Graves is more wild in the fluctuations, but it doesn't generally happen so quickly. Of course it may also be that the PTU is just too strong for you, and that maybe you should be only on carbimazole or a low-iodine diet. Chat with both your GP and the endo, as you know your body. Just out of curiosity, has the endo done antibody tests? If you are positive for antibodies, you have Graves. No questions. Otherwise, just hang in there. Keep us up to date!

Serene

[soniebon]

Even though i still dont have a thyroid and am taking 150 m of thyroxine they have never been able to get my levels spot on,too high or too low..but better than having the damn filthy thing in!!! yes i still have anitbodies even though my diseased lil mate is now somewhere in a specimen jar and being looked at by students,i swear its haunting me..lol
Hope girls you all continue to be well and those who arent may you be well soon