# Graves Disease and getting pregnant



## laylabear (Nov 9, 2014)

Hi all 
I'm new to this board .. 
I m hoping I can get some support and info on this topic
Two weeks I was diagnosed with graves disease. I'm still getting my head around it 
I'm a 34 year old female with an 8 month old daughter 
We were just about to try for our second baby so this news is devastating to us .. Especially as I keep myself very fit and healthy . This disease has just teared its ugly head out of no where 
My Endo had recommended a total thyroidectomy and says within 3 -4 monh a if my levels are good I should have no issues getting pregnant 
I'm absolutely petrified .. Firstly about the surgery , secondly about having issues ttc . We conceived out first baby on the second try ... 
Has anyone else been through this and had a successful pregnnacy ? 
Is it a bit drastic having a thyroidectomy ? It's seems so final 
Any info or support would be appreciate as I'm driving myself crazy trying to find out any info l this


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## Andros (Aug 26, 2009)

Welcome! As a veteran Graves' patient; I do agree with your endo. Any surgery is scary but it would be even more scary to let the disease progress to the point that you cannot mother the child you already have.

Give this some serious thought and God bless! There are many times when we have to go on good faith w/our decision-making process. Just interview a couple of surgeons and chose the one that you feel the most comfortable about.


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## Lovlkn (Dec 20, 2009)

I also agree with your endo - have your thyroid removed and get on with your life. I am 10 years post op and wish I would have had a TT when I was diagnosed.

Chances are even if you reach a remission it will not last and will cause permanent frequent monitoring.

You are beginning your life as a MOM - a thyroid removal will render you immediately hypo , however this is the best place to be to dial in your replacement medications. Being on replacement meds is better than being on anti thyroid med's.

My graves appeared after 2 miscarriages and my first live delivery. I got pregnant the 2nd time the 1st try and I figure I was full blown hyper at the time based on photos and my "wide eyes". Then add 7 years and 2 toddlers to trying to get a diagnosis. Consider yourself lucky that they diagnosed you and offered you a thyroid removal. DO NOT take RAI and that causes the thyroid to die and 1 dose may not be enough. Plus, you will need to keep your distance from your children and husband to not expose them to radiation.

Start asking for your lab results and post them along with ranges.


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## webster2 (May 19, 2011)

I would agree as well. I have bone density issues from being hyperthyroid for a long time. I wish my first thyroid surgery had been a total thyroidectomy. Graves disease can cause a lot of other troubles in the body.


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## Lovlkn (Dec 20, 2009)

I also have bone issues as well - despite being 5' 10" tall and Caucasian.


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## laylabear (Nov 9, 2014)

Thank you so much everyone !! I'm starting to feel a lot more confident about getting a total thyroidectomy 
I had gotten into my head that I wouldn't be able to have more children after the surgery and my children are my life .. 
We have a family history of thyroid disease , all the females on my mums side are hypo thyroid so when I came back the opposite I had no idea what to do about it 
I had been making the Dr test my thyroid levels every three months post baby .. You could say I was kinda waiting for this .. But not the the hyper kind 
Thanks Lovlkn for the advice on not having the RAI 
To be honest the idea of putting that stuff in my body scares me a whole lot more than surgery 
I have been on the carbmizole for a week now and just today I am feeling much less anxious and my old self again 
It's nice to be able to breathe easy again .. I had been so short of breath
So LOVELKN , were you able to conceive after surgery ? And we're you on the thyroxine ? 
I'm just wondering how long it takes to get your levels right once your hypo 
Here are my levels when I was diagnosed 
I am seeing the Endo in three weeks as he wants to bring my levels down before surgery 
We are getting married in January , so I'm waiting until after then to schedule the surgery 
Everyone here has helped me make my decision .. I'll def keep posting in the lead up til surgery and post op 
This sounds silly but I was in denial for a week or two thinking that my thyrois would just magically to back to normal on its own or even better that the drs had made. A mistake 
Oh I have two more questions Do you still have Graves' disease after your thyrois is gone ? 
When you have no thyroid are you treated the same as someone who has an underactive thyroid ? 
Oh my levels before carbmizole . I have no idea what they mean 
Tsh fully suppreased 0.01
T4 29 my Endo says normal is 15 
Free t3 12.9
trab 10 
TPOE normal


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## laylabear (Nov 9, 2014)

Hi guys 
I have an update and really need your advice 
I rang my Endo and he said my levels are safe enough to operate 
They won't give me iodine before surgery becaue I'm still breastfeesing but will ramp up the meds im on 
The surgeon has pencilled me in for the 28th of November but I have a week to change my mind 
We are getting married on jan 3rd 
THe Endo has said if it was him he wouldn't do it before the wedding due to the scar 
The surgeon is operating using minimal invasive surgery so the scar will be around 2 inches long 
Would you go ahead if you were me or wait until after the wedding ? 
I'm seeing the surgeon next Thursday either way to get things moving along


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## Lovlkn (Dec 20, 2009)

> So LOVELKN , were you able to conceive after surgery ? And we're you on the thyroxine ?


I was undiagnosed and very hyper when I conceived.

It's great that your doctor is doing minimally invasive!! My scar is less than 1" and most people cannot see it.

I have to agree with your doctor to do it prior to your wedding.

Figure your replacement dosage as 1.8mcg of replacement medication to 1 kilogram of body weight. That is a good starting point.

You will be treated like a hypo person. It is critical for you to insist your doctor run Free T-4 and Free T-3 going forward to dial in your replacement dosage and to confirm you are converting properly.

You will always have Graves - however, without a thyroid gland - it has nothing to attack.


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## webster2 (May 19, 2011)

Lov, I am 6'1" and not the stereotypical candidate for osteo either. My endo believes I had a hysterectomy from undiagnosed Graves too.

I had undiagnosed Graves for years; my endo figures 20 years. Our first child was born in 1980. We lost 5 pregnancies in the next 10 years. I had a partial thyroidectomy on 11/14/1990. Kid # 2 arrived 11/12/91 at a very healthy 10 pounds. he'll be 23 tomorrow. I love my scar, it is not noticeable, but to me it is a touchstone of strength.


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## Octavia (Aug 1, 2011)

Honestly, I'm not certain I would do the surgery before the wedding, but I would give it serious thought. I guess it depends how bad you feel right now. If you feel pretty good right now on the anti-thyroid meds...well, at least you KNOW how you feel, and it's not bad. The risk is that it may take a while (several weeks to months) for you and your doctor to find the right level of replacement meds for you after the surgery, and you may not feel great during that time. If you are having a big wedding (read: lots of work and stress), I'd be more inclined to wait until after the wedding to have the surgery, but ONLY if you feel decent right now. If you feel pretty bad right now, then I would say go for it.

What are your thoughts about it? You know your body better than anyone.


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## joplin1975 (Jul 21, 2011)

Yeah, I had to agree with Octavia.

I wouldn't be too concerned about the scar. The scar should be minimal and barely noticeable, presuming you have a skill surgeon. I can dig up some pictures of my scar a few weeks out, if that's helpful. I was the maid of honor in my friends wedding a couple of months after my surgery and the scar wasn't even a concern (I was wearing a halter dress with a lower neckline).

The real issue is dialing in on your meds, which can be tricky and a bit of a process.


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## Andros (Aug 26, 2009)

Go for it! Git 'er dun'; as they say. This way, the honeymoon will be a happy one. No black cloud hanging over your head. You are going to be fine and you will have more children if that is what you desire.


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## laylabear (Nov 9, 2014)

Your right Webster2 , the scar is something we should all wear with pride .. It has a story to tell and is all part of the journey 
Octavia I feel pretty good at the moment , my symptoms with graves hasn't been too severe and the antiyhyroid meds seem to be working 
I think I got excited at the prospect of having it all over and done with before Christmas and being able to focus on the wedding and christmas and the new year without the thyroid surgery lingering over me 
I have to just suck it up And be patient I think and move forward 
Thankyou LOVELKN for sharing all that info with me 
I'll defintely be taking charge of my health and asking the drs for t3 and t4 levels also 
I know on the last three blood tests in his notes he had jotted that down 
I just thought that was standard but Obv not all drs test for it
Ok going to see the surgeon Thursday and then 
I'll book the surgery for jan .. Hopefully they can stabilise me quickly after surgery with meds
So lov , with a quick calculation that's means Id would need around 90mcg of thyroxine a day 
And I'm so glad to hear the ladies on here having healthy pregnancies and babies
LOVELKN have you had to change your levels much or are you pretty much under control for the most part of it ?


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## Octavia (Aug 1, 2011)

If you are a normal size young person, odds are slim to none that 90 mcg will be enough for you. I weigh about 125 to 130 pounds and I take 137 mcg. It seems like most of us here are between 125 and 175 mcg. of Synthroid.


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## laylabear (Nov 9, 2014)

Gratis is good to know Octavia as I want to get the dose near enough to correct as possible 
I weigh around 110 pounds


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## Lovlkn (Dec 20, 2009)

> So lov , with a quick calculation that's means Id would need around 90mcg of thyroxine a day
> And I'm so glad to hear the ladies on here having healthy pregnancies and babies
> LOVELKN have you had to change your levels much or are you pretty much under control for the most part of it ?


OK - I'll speak up as far as the anti thyroid medications and the fact in 2 months you very well could be rendered hypo.

Please, please insist they run the FT-4 and FT-3 and be on lookout for symptoms of being hypo.



> Oh my levels before carbmizole . I have no idea what they mean
> Tsh fully suppreased 0.01
> T4 29 my Endo says normal is 15
> Free t3 12.9
> ...


Can you please call and get the actual lab sheet and post with ranges please.

I crawled out of hypo post surgery for my TT. It took me years to find my dose, however I felt a whole lot better being on replacement rather than anti thyroid med's. I had other issues - low ferritin, low D and struggled when I added Cytomel 7 months post surgery, more likely from being in a hypo state for an extended period of time. This is my theory and I'm sticking to it.

I've been on the same dose for 5 years and can say it probably took me longer than most to get stabilized - I was also on anti thyroid medications for 4.5 years so my body was pretty messed up from them.


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## laylabear (Nov 9, 2014)

In so sorry to hear that LOV after seeing what my mum went through undiagnosed for a long time in hypo I know it's not nice to feel that way 
I'll be asking for my labs at the next appointment which is in two weeks 
I'm glad you mentioned ferritin my body has always had issues absorbing iron and I used to get ferritin injections atm my levels seem good 
In fact before I was diagnosed with graves I simply thought my ferritin was low as the symptoms of short of breath and tiredness was very very similar 
See I felt really tired with the graves and then had all the energy in the world 
Very strange 
My Endo js running bloods again in two weeks to monitor my levels and in guessing it's to see if her need to decrease the anti thyroid meds before I go too hypo 
I've just looked at the bloods form and he has ordered
Tsh level 
FT4 
FT3 
Ia his what you mean LOV ? Should I be asking for anything else ?


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## laylabear (Nov 9, 2014)

LOV , also after the thyroidectomy .. Did you find it harder to control your weight ? I'm sorry it's suh a personal question but a friend of mine had RAI and ballooned 
She used to be tiny and very petite like me so it was a shock for her


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## laylabear (Nov 9, 2014)

Thankyou Joplin for your insight .. Andros and octavia for your postive energy and Advice 
I truly appreciate it !! 
I'm going to wait and do it in 8 weeks .. I'm really stressed. As it is with everything and I don't want the added pressure 
I thought my symptoms were getting better but today I had a bad day a "hyper" day 
But of heart palpitations and really racey 
I noticed it kicked in after a coffee too .. ( I haven't had caffeine in a few months .. Maybe a year ) so I won't be doing that again


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## jenny v (May 6, 2012)

Oh, yeah, stay away from coffee and other stimulants with Graves! Even the slightest bit can make your system go nuts.


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## webster2 (May 19, 2011)

And, rest whenever possible.


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## laylabear (Nov 9, 2014)

Just an update on this topic ! I just saw my specialist and after three weeks on carbmizole my thyroid levels are within the normal range 
Which explains why I feel fantastic !! 
I'm scheduled for surgery jan 9th and yhe Endo has just reduced my dose of meds .. 
I feel amazing and hope to continue feeling this way after surgery


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