graves Disease

[paradise lost]

Okay, no matter HOW big/small/flat/inverted your nipples are you can ABSOLUTELY learn to express by hand if you need to. Here's a link to a site with great instructions plus pictures. It's all down to technique - i would easily get 40-60ml MORE if i went by hand instead of using the dumb pump (i had 36J boobs and large flat nipples) - without putting too fine a point on it, there aren't cows you CAN'T milk - every lactating woman can express, it's just about mastering the technique that works for your anatomy. Purplemama, one of BB's much-loved users, expressed for her cleft baby for many months, she might still be in fact. Maybe if you go to the "children's medical conditions" bit and search for threads on cleft babies you'll find her. I'm sure she'll have great info for you, she's an inspiring woman

There's a 65%+ chance your bubs won't have a cleft palate - are they going to scan you for that or do you have to wait and see? Either way you can start to collect all the info and get the support you'll need into place NOW, so that when she comes you are ready for the next steps.

I never had Graves, i've got Hashi's, the opposite, but yes, i hate that it's autoimmune. Diabetes type 1 and hashi's run in my family too, and i HATE that it's my own body that's doing this to itself. When i was first diagnosed the idea of taking meds for the rest of my life terrified me. I hate the idea that now i am NOT ok. If i can't get my medication i will NOT be fine. That bugs me. I pictured the mounds and mounds of medication i had to take over the next 60 years, but i realised that now, today, i only have to take 1 pill. And that's how i think of it. 1 pill. I was a homebirther with DD and i don't relish the idea of having complications with #2 that mean i have to go into hossie. I've never even had a drip in, let alone stayed in a hospital! I guess i'll just have to jump in and see what happens, but i won't be doing so this year!

Bx

[HellRazeD]

Thanks Hoobley. You really should be a middy. You do so much better at calming people than they do, because you know what its like. I guess I am just really scared about how much harder this pregnancy is compared to my other 2. Thanks.

[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