graves Disease

**~mamaspice~** · August 20th, 2008, 07:52 PM

Hi bathsheba, I think I'd have to agree that your's is most likely PP hyperthyroidism. graves is usually diagnosed when there are thyroid tissue antibodies in your bloods (as well as having the suppressed TSH and high amounts of T3 & T4). The fact that yours has responded soo quickly means it's probably either PP or you are lucky enough to be one of the 20% of graves suffers whose meds put the disease into remission within a year. The rest of us usually need RAI or thyroid surgery to try and fix the problem.

paradise lost · August 20th, 2008, 09:27 PM

Bath the difference between PP and Graves is months and antibodies. If it lasts more than 8 months after the birth and/or you have thyroid stimulating immunoglobulins it's not PP as far as UK endo's are concerned. That doesn't mean it won't spontaneously resolve (my mum's Hashi's was only bad for the first 2 years after each of her babies and she wasn't medicated even then, had a big goiter and was ill though) it just means that the definition is that of periodically remissive Graves, not PP. You might find when you completely wean you completely recover. Weaning made a massive difference to my levels. Have you had your antibodies checked? If you have antibodies you have Graves, to put it in perspective, i am still medicated and my most recent baby was born in April 2006 only a few months before yours, i DEFINITELY have Hashi's, not PP hypothyroidism. The other thing to consider is that like diabetes (type 2) the occurence of PP thyroiditis makes it much more likely you'll get Graves.

Probably you didn't want to read this, and i hope i'm wrong and that once you wean you get well and it never comes back, but it might be best to be prepared for this to possibly be with you a little longer. That your levels dropped very low and have since climbed a little tells me there is an unresolved process continuing in your body.

Bx

**Bathsheba** · August 21st, 2008, 08:47 AM

Thanks girls... yep I think I must have Graves then. Pretty sure doctor did a test for anti-bodies and they were present. He does seem very perplexed by it all though. I agree, once I wean I'm confident that all will be well. My toddler is 2yo old now and I think it might be time to slow down on the BFing although it's really helped over winter keeping him healthy... and geeze... what on Earth am I going to do every night in the wee hours when he wakes up... wants to be brought into my bed and have a 2 minute BF before going straight back to sleep??? I guess I'll have to be more firm about it. Maybe stop all BFing during the day and hope that I dry up? If I refused him feeds at night i'd be up for hours

Also... just to clarify: when i was first diagnosed last December I resisted any thyroid medication for several months... only took beta blockers for my heart rate. Finally my GP convinced me to see an Endo. And finally, during autumn sometime, he convinced me that i could still BF and take PTU. He was going to put me on 4 tablets a day but i talked him down to 3. Within 6 weeks i was euthyroid (got that normal blood level of 13). Now i'm back on 1 tablet a day. I really do think I must have a very mild case of it... it sounds like an awful thing to have for the rest of my life though... I'm usually such a healthy person... this has quite thrown me

But thanks again girls.

paradise lost · August 21st, 2008, 10:10 AM

I'm usually such a healthy person... this has quite thrown me

Aw hun i SO know what you mean! What was worst for me is that in the UK if you have an illness that needs meds to sustain life your prescriptions become free, and i felt i'd gone from completely healthy to being someone who had an illness that meant i need meds to live. Yeah, it's great my meds are free (i'd be out 30GBP/year just on thyroxine) but having to take pills FOREVER...awful. But then i got to thinking i just have to take one pill, today, and that's it. At first i was thinking of this mountain of meds i'd get through in my life. Now i don't think about it. It's a supplementary hormone my body doesn't make, just like my EPO is a supplementary fat my body appreciates.

Hang in there, once you get used to the idea everything begins to look like it did before..

Bx

**HellRazeD** · August 21st, 2008, 05:04 PM

Chin up Bath...
Its an awful disease, but it IS manageable. I understand entirely what you mean. When my DD was 6mo, I went from 71kg and healthy, to 93 kg and unhealthy in the space of a few weeks. I was diagnosed with Diabetes (lovely, Dr's didnt even look at the fact that the weight gain was sudden, just assumed that because I was obese at the time that it was T2, found out last week its T1). Then this year, similar, but in reverse. Went from 117kg and able to work, run and exercise (yet the weight stayed on...), to 87kg and unable to do anything. Hello Graves!

The point is, it is a struggle to accept a change in health, especially when it is so dramatic. I used to be on a state waterpolo team, do Gymnastics and sprint swimming, and I was learning Tae Kwon Do too! But that all changed when I put that weight on for no apparent reason. It is even harder now because I have lost so much weight that I am weak if I try to do much....

It is normal to be frustrated and frightened by it, the trick is to tell yourself you can cope, and if you can't, you have us here. Hoobley told me that

. The thing right now, is that you are not in control. But, you CAN be. That's what the GP and the endo are aiming for... they are there to work with you to gain control of the disease. They (generally speaking) are genuinely concerned about it. Their goal is to enable you to CONTROL it, instead of It controlling YOU!

Weaning would probably help... and it will help the endo make a more accurate diagnosis too... Not that I usually encourage people to stop BFing, but in this case, it will probably be beneficial.

Keep us up to date

Serene

**Juan** · August 25th, 2008, 01:58 PM

Hi there,

I was SO relieved when I discovered this forum. I have just been diagnosed with hyperthyroidism and Graves Disease- and i am terrified!!

I am worried about my ability to have a baby. Has anyone had problems concieving or carrying a baby?

Also- has anyone had an itch all over thier body that they just can't get rid of?? My itch is unbearable and I can't stop scratching- my poor husband has to sleep in the spare room- not good for newlyweds!!

And my last worry- has anyone NOT put on weight on these medications?

**~mamaspice~** · August 25th, 2008, 02:20 PM

Hi Juan, and welcome to BB!

I have had Graves for about 5 years and I successfully fell pregnant (first try) and carried a healthy little bubba. I was on PTU during the preg but only a small amount as the pregnancy kind of suppressed the graves to a certain extent. The graves did flare up again post preg though.
As for putting on weight on meds, I put on weight quite quickly as I had lost a lot of lean muscle tissue in my legs and stuff and I also found it difficult to cut my eating back (I had gotten used to eating a fair bit while my graves was untreated and of course I was still losing weight then) but when my meds slowed my metabolism down I was eating too much and with less lean muscle tissue to burn energy the kilo's piled on.

Best of luck

**Juan** · August 25th, 2008, 02:26 PM

Hi Spice,

Your first sentence sent a wave of relief through me- THANK YOU! I am looking forward to seeing the specialist so I can get a clear idea of what I have and what I have to do.

I will certainly be visting this forum regularly.

**Bathsheba** · August 25th, 2008, 02:50 PM

Welcome to our little support group Juan

Firstly: the itching. During my last pregnancy I had a condition called Cholestasis which made me itch but it was mainly just my hands and feet... it was unbearable!!! Sounds to me like there could be an issue with your liver... mention it to your GP.

Conception: I was only diagnosed with hyperthyroidism after the birth of my 3rd baby... but if I had it before (which i may have, who knows... my weight has always tended to fluctuate regardless of eating patterns)... if I had it before then it didn't affect my ability to conceive... I am extremely fertile... the kind of woman who just has to look at her husband the right way and fall pregnant! But I have heard that Graves can interfere with fertility.

Weight gain: yep, the medication (PTU) did result in a bit of weight gain... but nothing too significant... only about 3/4 kilos. I got down to about 60kg at my most hyperthyroid state and am now about 65kg... my healthy weight is about 63kg. At first I quite liked the side-effect of weight loss that comes with being hyperthyroid... but the joy doesn't last. Soon the weakness will get to you. Better to stabilise the weight rather than losing your muscles. I'm finding it's taking a long time to rebuild the muscle that i lost. You need muscle to burn fat.

My update: feeling good. Taking 1 tablet of PTU per day. Have good energy levels. Weight stable. Moods a bit erratic. Still a bit of hair loss

Also have very dry hair... this is meant to be a symptom of thyroid issues... not liking it at all. No heart palpitations... all good there! Rapid heart rate was the most noticeable aspect of my condition when i was at my most hyperthyroid.

ETA: oh and thankyou Serene for your support

**~mamaspice~** · August 25th, 2008, 03:05 PM

Bathsheba, rapid heart rate was what started to make me wonder what was going on too. One day when I was laying down my resting heart rate was 145bpm. Oh, and there was the weight loss (despite eating like a horse) and the moodiness, intolerance to heat, weak thigh muscles and of course hand tremors. Oh it's fun isn't it . . .

**Bathsheba** · August 25th, 2008, 03:10 PM

Ah yes... i forgot about the hand tremors... that was another clue that led me to the doctor. Thankfully no sign of that now either. My heart rate got to about 130Bpm at rest at it's worst. I've been wanting to buy a heart rate monitor but they are so expensive.

paradise lost · August 25th, 2008, 08:38 PM

OMG ladies, takes me back. I once had a nurse take my resting rate after i'd been laying on the table for a bunch of other things (i was joining the practice, so i had a smear and a bunch of swabs taken, blood taken, my BP done, etc.) and it was 38bpm! She almost called an ambulance! THe following morning i took it on waking and it was 37! Thankfully now i'm medicated it's more like 44-50bpm (i exercise quite a lot too though, some of that is fitness).

**HellRazeD** · August 25th, 2008, 09:40 PM

Hi there,

I was SO relieved when I discovered this forum. I have just been diagnosed with hyperthyroidism and Graves Disease- and i am terrified!!

I am worried about my ability to have a baby. Has anyone had problems concieving or carrying a baby?

Also- has anyone had an itch all over thier body that they just can't get rid of?? My itch is unbearable and I can't stop scratching- my poor husband has to sleep in the spare room- not good for newlyweds!!

And my last worry- has anyone NOT put on weight on these medications?

Hi Juan,

Welcome to the club

. Graves is devastating to learn about, mostly because it is something that essentially does not go away. But that does NOT mean you cannot have a life, and it does NOT mean that your life is going to go down hill!

Its a crappy thing to have, but you can do it! When all the symptoms abate, it is MUCH less scary! I think the best one is when the heart rate and tremors settle. Thats when you notice a difference!

Just a note, I have used headings in bold so you can find the interesting bits fast... its a big long post I'm afraid, but theres so much to tell you...

Firstly, the conceiving... I have had no trouble, in fact, developing severe thyrotoxicity was the reason I conceived... It stopped my pill from working properly

. For the life of me though, I still cannot figure out how I managed to "do the deed" when I was so very ill, or even why I wanted to! Some people have trouble conceiving with Graves, but this does not affect everyone. All you can really do is get a little better and then have a try. For the record, several studies have shown that the chance of conceiving in any given month is related to a man's sperm count. And the best way to ensure this is high, is to (sounds strange...) have LOTS of sex, and frequently. The more they ejaculate, the faster the body makes sperm, and the more they make too. So, go like bunnies. You said you are a newlywed, so take advantage of it!

The issue with Carrying a baby (which right now I am doing), is that
1. your body may flood baby with thyroid antibodies, either destroying her thyroid, or causing it to not develop correctly, meaning she will need thyroxine daily for life.
2. the medication may suppress baby's thyroid unnaturally and cause her to become thyrotoxic at birth.
Doctors are aware of this, and they keep a very close eye on everything, hell, I am having weekly bloods done... I feel like a pin cushion

. But you must think of it as a POSITIVE THING! read back through the thread, this is something I struggled with for a while, and its very hard to get past it, but I did. Just be aware that if your antibody levels spike, you will be induced early.

Secondly, the itching... Are you pregnant already? If yes, then the itching is most likely either liver-related, or hormonal. If not, then as your immune system is in overdrive at the moment, you may be experiencing sensitivities to things that were not an issue before. Have a look at your environment, especially your washing powder and bedsheets. If you have recently changed washing powders, change back and see what happens. The other thing, is to determine where the itch affect you. If it is on your palms and soles, see a doctor. If it does not affect your face and neck, I recommend also seeing a doctor. Please do not take this badly, but scabies is very common, and the buggers are impossible to see. But its easily treatable, and has nothing to do with hygiene, socioeconomic status or anything else. Also, if you have a cold, you may actually be having an allergic reaction to the virus. Its not uncommon... and usually only happens the once. All these are possibilities, so best to see your GP.

I had the itching too, and it drove my husband insane! Mine went within about 4 weeks of commencing Neomercazole. For me, it was entirely because my immune function was through the roof. Yay fun

. Lets hope it is. You will know very soon (if you are on meds) if it was...

Lastly, Hmmm. Weight gain...
I am 28 wks preg, and I have only put on 6kg, when I should have put on at least 10 by now. To give you a timeline, In July of 2007, I was 115kg. In December 2007, I began to notice I was ill, but I was still 113kg. By mid-Feb 2008, I was 91kg. By the end of Feb, I was only 87kg. No matter how you look at it, that is a MASSIVE weight loss. I have been on the neo since March, and it is only since I started corticosteroids 5 weeks ago that I have put on any weight. And I am putting that down to a side-effect of the steroids, because that was the same time my Graves went into remission, and within 3 days of beginning the steroid, I had put on 2.2kg. Pregnancy does often send it into remission, but it doesn't appear to have done that for me. So to answer your question, yes, I experienced NOT putting weight on. Which is the reason for the steroid in the first place.

My dietitian put me on Sustagen (at the pharmacy) and a high kJ, high protein diet to help stem the weight loss and replace the lean muscle mass I had lost during the weakness and shakes. I was taking in about 12000kJ a day. The recommended intake for my 6ft4 army soldier husband is only 8000kJ, and I was still not putting weight on, so it is a BIG drain on the metabolism. Thankfully, that has stopped now... Baby likes to kick my stomach, so I think if I was having to eat that mush still, I would be constantly throwing up. Maybe the sustagen or milo even would be a good thing to try.

No matter what, this is a supportive place, and thats what we do here. We wish you all the success in overcoming this, and we will be here every step of the way.

Serene

**Juan** · August 26th, 2008, 08:06 AM

WOW! Ladies, thank you for your support and information- it means alot to me.

Everyone around me says not to worry about this and it is no big deal- but it is a big deal to ME, so thank you for understanding. You have all settled my mind a lot!

I am seeing my specialist tomorrow so I will let you know how it goes.

**~mamaspice~** · August 28th, 2008, 09:30 PM

Juan, how did you go with the specialist?

Just wanted to pop in and say I spoke to my old Endo today (the big kahuna of endochrinology in Queensland) and he has told me that he thinks I should postpone my OP until after I have my next baby . . .woohoo

**Juan** · August 29th, 2008, 07:57 AM

Hi Spice!

I am glad you are able to hold off on the OP for some time! That is excellent news!

The specialist basically put me on medication and told me to see him again in 6 weeks time. He was a nice guy but I felt a bit rushed and pushed out the door- he didn't even take a blood test or check my pulse- is this normal??

The most important thing he told me is that I have to wait at least 12 months before I can have a baby (booo!). I also mentioned to him that i haven't had a period in about 3 months but he said it was unrelated to the Graves- I have read on the net that it IS also a symptom- have you experienced this?

**jas08** · August 29th, 2008, 01:26 PM

Hi girls,
boy there has been so activity in here since i was away! I wish the medication stopped my hand temors - mine are still there 8 months after the fact. Off to see my specialist on Wednesday if i can get to having my blood tests - 3 out of my 4 boys are down with brocitius at the moment so i will have to check what time they open and shut for dh before work.
Spice that is good news. How is the ttc going? Cant wait to hear some exciting news. lol i have 4 but hearing about other ppl's baby news is still exciting.
Juan welcome to our little thread. Hope your specialist appointment went well.
Bathsheba - Welcome to you as well. Unfortuately for me my hand temors didnt set of any alarms with me. Just having a csection i was told that it was due to the stress.
Serene - How is the pregnancy going? Are you starting to count down yet?
Hello again to everyone else, my bub just woke up so i will have to have another shot at personals later on. Hope everyone is feeling on the up side today.

**HellRazeD** · August 30th, 2008, 09:08 PM

Hey Jas! Long time no see! How have you been? I am definitely counting down the days! 67 to go! ATM I am in remission, so my endo has given me a blood test holiday for 2 weeks! Yay! No stabbies for 2 whole weeks!!

Thankyou God!! But, I swear the little minx HATES my ribs and my cervix... Either that or she is trying to claw her way out! Very uncomfortable, and extremely disarming!

Not good bout your boys... Know what you meant though... Rota virus AND slapped cheeks are going round my kids school at once... Ugh.

Hey Juan... Sorry to hear about your appointment disappointment... Unfortunately, most doctors have no bedside manner whatsoever, be it because they have no time, or because they believe they do not need to have one, it is still very common, and unfortunately, all you can do is implore to him just how you feel, prompt him on what is worrying you ("hey doc, is my blood pressure and pulse OK, because it feels like my heart is racing" sort of thing), or find another one. If you can let us know where abouts you are, maybe one of us can recommend another doc in your area.

For some people, amenorrhoea (absence of menstruation) is a symptom, but it is more related to poor nutrition associated with severe acute thyroiditis, and rarely a direct symptom of the Graves itself. Though, of course, in some people, the Graves can be so severe it throws the Menstrual cycle out of whack... I was irregular as hell for about 10 months before I was diagnosed, even on the pill. But again, total absence is not really that common as a direct symptom. My suggestion, is to get a "crystal clear" brand pregnancy test, and if negative, do some ovulation tests. Thyroid diseases are associated with Polycystic Ovarian Syndrome (more commonly though the under-active than over...), and this CAN cause anovulation and amenorrhoea. I dearly hope you haven't been saddled with this too... To have to deal with just ONE chronic disease is alot to ask... More is torture.

Good luck with your battle...