Graves Disease, TTC and pregnacy

[quick.brown.fox]

Hi,

I've had a look through the forum and there has been some helpful advice, but thought I'd start a thread because I'm wondering if anyone is currently in the same situation as myself/or information/research/medications have changed since some of the older threads.

Just Dx with Graves disease; it's been very frustrating as I could have had this for years (I was tested for the first time in 2011, and got low TSH and high T3/4, not very high levels, but abnormal enough for the GP to comment that I may have had a transient/fleeting reaction post a common cold/virus, but the GP's never followed it up, and it got picked up by a neurologist because the idiot GP thought my symptoms were either neurological or psychological!) I have had the Sx for maybe 10 years or so.

I don't want to 'google doctor diagnose' myself more than I have lol, and will be seeing the Endo specialist tomorrow, so can ask a few questions, but I'm quite stressed and wondering if anyone else has been through this.

1) first time in 15 yrs I was w/o AF for 4 months (last yr, from September), but FS (was referred to a FS to rule out Endometriosis because of extremely painful/heavy AF/dysmenorrhea) who, since return of AF, has said I've been ovulating (at least once confirmed anyway, and the other hormones apparently look good).
2) I might be in the 2WW, I am doubtful, but now concerned because of health and development risks to potential bub/medication or Tx I might need to have if or if not pregnant
3) concerned about how long I might have to wait before TTC if I need aggressive Tx (we really need to start soon, my beautiful DH, chronologically, isn't a spring chicken (very young at heart), and I'll be 31 this yr.
4) Anyone with Graves struggle with TTC? I keep reading statement like 'Yes, women with Graves disease CAN ACTUALLY fall pregnant!' which is freaking me out, the info out there seems to imply that conception, implantation, miscarriage and stillbirth are major high risk issues.
5) Have a blood slip for a day 21 test, but have a 32 day cycle; the advice I've gotten about what this means has varied; 1 doc says 'your levels will be too low then because your cycle is longer than average' vs, 'it's always day 21, doesn't matter how long your cycle is' so I'm confused!
6) The FS doesn't seem to think I will have any real issues with successfully TTC, however, this was before the Dx of Graves.
7)I think I may be TTC for awhile as have been 'intimate' w/o regular contraception (I think I was on the pill for about 4 months, because of painful AF) with my now husband for 7 years; side issue, it is improving, but BD-ing is often quite painful for me too (wouldn't it be nice to have a 'push button #1 for pregnancy....push #2 for 'intimate times' w/o pregnancy lol?). So it's really only been this year I've started temping, using OPK's etc.

I'd really love to hear stories or information from anyone who has been through this/going through this. I'm trying to be nice and relaxed but I'm absolutely terrified we won't be able to have kids, it's just a really horrible place to be. The actual Sx of the disease aren't pleasant but the thought of not being able to create our family is worse at the moment (not trying to be a drama queen here, but I just look back and see my study, work etc, DH's plans, work etc has been for us to create our family. And I adore my DH, he is so surprisingly domestic, would be the greatest Dad. I think I'm still a bit in shock from hearing the bad news yesterday that 'no kids' might have to be something we will actually have to consider... Any words of wisdom lol? Thanks for reading

[~TT40~]

hi
I haven't got much help...mainly just bumping it for you. my mum had graves dx tho. I say had because she was allergic to the medication they gave her for it so ended up just having her whole thyroid removed instead. this was after she finisjed having kids, but had symptoms when ttc and pg with my youngedt brother. (im pretty sure he was only a yr or two when she had her thyroid removed.
are you on any meds?

[quick.brown.fox]

hi
I haven't got much help...mainly just bumping it for you. my mum had graves dx tho. I say had because she was allergic to the medication they gave her for it so ended up just having her whole thyroid removed instead. this was after she finisjed having kids, but had symptoms when ttc and pg with my youngedt brother. (im pretty sure he was only a yr or two when she had her thyroid removed.
are you on any meds?

Thanks, no meds yet... will find out tomorrow perhaps :/

[milka]

Hello I have graves disease and gave birth to my third son 4 months ago! I also have the attractive bulgy eyes associated with graves... But oh well here is my history. Warning it is a long read !!

2007 - Had a miscarriage at 7 weeks and then no AF for 4 months which led me to the GP for tests. Tests revealed very hypo thyroid so sent to endocrinologist for testing & medication. I was very sick during this period of diagnosis & figuring out my correct medication. Graves was also diagnosed and my eyes looked like an ugly fish and were protruding & so painful. Anyway after a couple of months my medication was working to control my thyroid and I was feeling much better but told NOT to TTC as the medication could cause miscarriage.

2008 - After 12 months on medication my thyroid was still too over active and the medication while making me feel better was doing all the work as my thyroid was not getting back to normal. I remember every time the endo tried to reduce my dose it would go crazy again. Anyway we really wanted to TTC so endo suggested a thyroidectomy. I agreed after researching and decided yes goodbye dodgy thyroid.

A few weeks after my surgery I was diagnosed as having Graves disease still and I guess I'll always have it. Put on medication for under active thyroid as I now had none... And I felt wonderful. Finally I felt normal again. No more crazy mood swings, and the other stuff I experienced during the previous 12 months. Plus my eyes calmed down a little too.

2009 - 3 MONTHS AFTER SURGERY I fell pregnant with DS1!! All went well and the only concern was my graves might be passed on to him during the birth but blood tests after his test showed no graves & normal thyroid levels

2010 - pregnant with DS2
2012 - pregnant with DS3

So this long winded story hopefully shows you my positive thyroid graves disease journey.

Good luck & let me know if you need more info xx

[MLR1901]

I haven't officially been diagnosed with Graves or Hashimoto's but I seem to have 'gestational' thyroid issues.
Am currently taking meds whilst pregnant (35 w)
and have been since 6 weeks ish.
I had 2 m/c (blighted ovums) and it was explained these could be due to my thyroid.
Never had history of issues before, regular 33 day cycle, never had symptoms that I thought something was up.
BUT only discovered between the first two pregnancies when my TSH levels were nuts.
I was told if not treated could lead to more m/c.
BUT again this bubs snuck in, I wasn't on meds as was waiting for TSH levels to change naturally.
Weird thing for me is that previous two bubs didn't develop, yet this one less gestation, developed while my levels were low!
Straight away was out on thyroxine.
Endo advised to stay on it until at least 3 mths after bubs, as thyroid can be a contributing factor to post natal depression, and if we plan for another bubs within a 2 year window, Enfo suggests to stay on it.

Yes it's possible to get pregnant, patience, don't be harsh on yourself, try for stress free environment, and if need be press for other tests. I have heard of some with Graves/Hasimotos having celiac's, and other dietary issues.

[wysiwyg]

I have hashimotos (but never had any real symptoms)- have been on thyroid both pregnancies no problems - I assumed it would take me a long time to conceive with DD because my levels were low at that point but not low enough to start medication apparently - I assumed wrong got pregnant first try but then my levels went crazy and I went on thyroxine under control of endocrinologist straight away. DS I was on thyroxine and got pregnant second try. Really with thyroid issues they can be so different for different people - some people do have problems falling pregnant probably but many others don't.

[quick.brown.fox]

Hello I have graves disease and gave birth to my third son 4 months ago! I also have the attractive bulgy eyes associated with graves... But oh well here is my history. Warning it is a long read !!

2007 - Had a miscarriage at 7 weeks and then no AF for 4 months which led me to the GP for tests. Tests revealed very hypo thyroid so sent to endocrinologist for testing & medication. I was very sick during this period of diagnosis & figuring out my correct medication. Graves was also diagnosed and my eyes looked like an ugly fish and were protruding & so painful. Anyway after a couple of months my medication was working to control my thyroid and I was feeling much better but told NOT to TTC as the medication could cause miscarriage.

2008 - After 12 months on medication my thyroid was still too over active and the medication while making me feel better was doing all the work as my thyroid was not getting back to normal. I remember every time the endo tried to reduce my dose it would go crazy again. Anyway we really wanted to TTC so endo suggested a thyroidectomy. I agreed after researching and decided yes goodbye dodgy thyroid.

A few weeks after my surgery I was diagnosed as having Graves disease still and I guess I'll always have it. Put on medication for under active thyroid as I now had none... And I felt wonderful. Finally I felt normal again. No more crazy mood swings, and the other stuff I experienced during the previous 12 months. Plus my eyes calmed down a little too.

2009 - 3 MONTHS AFTER SURGERY I fell pregnant with DS1!! All went well and the only concern was my graves might be passed on to him during the birth but blood tests after his test showed no graves & normal thyroid levels

2010 - pregnant with DS2
2012 - pregnant with DS3

So this long winded story hopefully shows you my positive thyroid graves disease journey.

Good luck & let me know if you need more info xx

Thank you so much for this. I'm so sorry to hear about your loss. I've been 'unwell' for a long time, I think it's been slowly brewing, don't have the eye issues but have pretty much everything else. Not long winded at all but I'm sure you felt like it just went on forever. I doubt I'm currently pregnant (have been unsuccessfully TTC) and can't believe I'm saying that I hope this month I'm unlucky, and AF arrives, because I don't want to put my child at risk (I actually feel a bit better about saying 'my child' after reading your post, was feeling a bit hopeless, self pity+++ lol). Off to the Endo today to discuss all this, but won't get my TSH antibody tests back for another week or so; the Dx was made post a nuclear imaging scan/radioactive uptake. I'm really glad to hear that it only took 3/12 post surg to conceive. I wish we had started sooner, but maybe it's good we didn't, as I could have esposed bub to high thyroid levels. Do you need Thyroxine? Thank you!

[milka]

Yes I'm on thyroxine for life now. This had no issues with any of my pregnancies they just did regular blood tests to check my levels and each pregnancy I've just had to increase my thyroxine intake and then reduce post birth. prior to my thyroidectomy I was on neomercizole for 12 months.

Don't be too hard on yourself and think what if this & that... Just get yourself sorted out so you feel good and have a normal thyroid and then see how TTC goes.

It took me 3/12 to fall pregnant only because I was a bit woozy after surgery & couldn't talk properly for 2 weeks. So we didn't try that first month so only really 2 months.

Take care - feel free to ask questions if it helps

Good luck