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Thread: graves Disease

  1. #145

    Default Question for Mara

    Hi everyone

    I'm new here to the forums. My name is Kath; I've got Graves Disease too - I was diagnosed in March this year when my baby was 10 months old; I was severely hyper at the time and had lost 12kgs in about 3 months and was eating like a horse; had heart palpitations and my eyes felt a bit funny. I thought it was because of the breastfeeding that I'd lost all the weight.

    Basically to cut a long story short - went to see an endo who recommended total thyroidectomy due to my age and wanting to have more kids/ I'm 35 so didn't want to wait to see if I'd go into remission due to the fact I'd had a few miscarriages in the past.

    I'm now just over 2 weeks post total thyroidectomy but like Mara; I have had problems with the calcium thing. I had to stay in hospital for 1 week after surgery also on the calcium drips and am now on a stack of calcium, magnesium and rocaltrol. The surgeon told me that in some Graves Disease patients they do see this reaction. I have 3 of the 4 parathyroids left after the surgery... they told me that 2 were a bit "battered and bruised"



    Mara, I was wondering as you had your surgery a little while ago now.... how are your calcium levels going...are you still on supplements and do they think it will be long term for you? I'm just curious to see if it settled down for you. I still am having the pins and needles in hands and feet even when they are saying the calcium levels are going up. My story sounds quite similar to yours... my bubs is 15 months old now and we would like another one soonish... as soon as is safe to conceive.

    The other thing I saw one of you mentioned ...the link between pre-eclampsia/toxemia and Graves... I developed severe post partum hypertension/ pre-eclampsia but with a strange presentation after the birth of my bubs.... my endo and renal physician say they are unrelated.... I was curious if any of you had other info. Interestingly when I had the thyroid out but had the parathyroid issue my blood pressure was fine this time.

    Sorry for the long post... seems like you have a great community here... lots of good info/ have been lurking for a while reading your stories trying to find out more for myself that what the docs tell you. Hope you are all going well!

    cheers Kath

  2. #146

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    Hi Kath, and welcome to BB

    I so know what you're going through at the moment.

    I was on calcium, magnesium and calcitriol (prob the same as you're rocaltrol) tablets for roughtly 4-6 weeks post surgery. When I first left the hospital I was on 6 calcium, 2 magnesium and 4 calcitriol tabs per day but as the weeks went on it was less and less. I still had 4 parathyroids but they had to transplant one of them into muscle tissue and they were all battered and bruised from the surgery - hence not functioning properly. I think you'll be totally fine once they recover and start to function properly again.

    I know what you mean about the tingling. Even when my levels were back to normal I still experienced tingling. Actually even to this day I still get a little tingling in my hands and feet sometimes. I also used to get a lot of muscle cramps. Apparently that was because of low magnesium levels.

    You'll definately need to wait until after your calcium evels are normal again before TTC. Hopefully it won't be too long for you

    Other than that. How are you feeling?

  3. #147

    Default Hi Mara

    Thanks for your reply; that's great to hear that yours settled down...gives me a bit of hope; I'm a little nervous that I could be one of the unlucky ones stuck on supplements long term but good to hear a good case such as yours. Fingers crossed we'll be as lucky!

    I'm feeling ok thanks... still a bit tired from it all... looking after an energetic 15month old on top of everything sure takes it out of you hey?? Hard to know what symptoms are related to the parathyroid issue and the lack of a thyroid. Think I had gone a bit underactive prior to surgery as I know that's how they want you but have had heaps of issues with hair falling out; tired; peeling nails; and now just feel super tired after walking up the stairs.

    To be honest I actually felt pretty full of energy and great with the Graves...guess cause by body was firing on all cylinders but I know it couldn't sustain that long term it burns out...bummer hey!!

    I'll keep checking in on this thread to see how you all are doing...it's good to be able to chat with people going through something similiar.... feel like it's all numbers and figures when you talk to your endo...you wait weeks to see them and then you are in and out in a few minutes once they've discussed your "levels" (which I still don't really understand...guess I'll have to know I'm on thyroxin for life!!)

    Thanks once again for giving me some hope this might settle!!

    Kath x

  4. #148

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    Hi everyone, I have just been diagnosed with Graves Disease...after noticing a rapid heart rate, tremors, poor sleep, fatigue, weight loss etc. I am now taking neo mercozole and have to see an endocrinologist...I am nervous about how long treatment will take in terms of fertility, as we have already been TTC for some time, with other issues to deal with, and I am not getting any younger. I am also used to be really active, but have had to slow down a bit, so I hope the meds take effect soon.

  5. #149

    Default Hi Possums

    I hear you! It's exactly what I was worrying about with the whole Graves thing. My endocrinologist recommended a thyroidectomy to me for the reasons you are worrying about. She explained that I had 3 options..... I could stay on medication for a few years to see if my Graves went into remission - but I could relapse; I could have the radioactive iodine but she couldn't guarantee safety for my eggs; or I could have the thyroidectomy and then once they get your levels right within a few months after surgery she said most people were fine to try and conceive. They just have to manage you more closely.

    Good luck with everything; I can totally sympathise; I had two miscarriages before I had my little boy (I consider him my miracle baby considering I probably had Graves at the time - the surgeon who took my thyroid out reckons maybe for at least 5 years!)

    When do you see your endocrinolgist?

  6. #150

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    Hi Possoms and welcome to this thread.
    The problems you've been having with conceiving and carrying etc could well be attributed to the Graves Disease. So hopefully being diagnosed will be a step in the right direction of you having your much longed for bubba. I was on propylthiouracil (PTU) for 5 years. PTU is considered the safer drug whilst pregnant and my pregnancy was fine. TBH the preg actually pretty much put the graves into remission. I only had to take half a tab per day. I did have a major relapse after the birth though which is very common. Just thought I'd tell you my experience so that you know you could very successfully have a bubba while you're on meds.

    Kath, just wanted to let you know that I had my calcium checked last week. It was a bit low (not dire but below the minimum acceptable reading) so I have to have more bloods done in 6 weeks time. Also my dose of thyroxine was too low so that's been upped too (no wonder I'd wacked on 10 kilo's since my OP in January) How are you doing?
    Last edited by ~mamaspice~; August 22nd, 2009 at 09:02 PM.

  7. #151

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    I've been wondering how long people stayed on anti-thyroid medication for... so thanks Mara for posting that you were on for 5 years. I've only been on them for 1 year (but I was naughty and stopped taking them for a few months). I was on PTU for a few months and have been on Carbimazole for about 4 months. My next blood test will include a liver function test to make sure everything is ok too.
    I feel fine ATM... I suspect I may have dropped back down into normal levels again. Have been putting on weight (am a good weight ATM), am sleeping well, no shakes, hair is in good condition, heart not racing. I'm taking 3 carbimazoles per day... I hope I might be able to drop 1 if my test results are good.

  8. #152

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    Hi Kath and welcome to our group. I think it is great that you feel so welcome. When i first posted a thread to find out more about graves i was told that it was uncommon - not the case so i have since found.
    How are things coming along?
    Hi Possums, Hopefully now that your graves has been picked up on you will get it all back in normal limits soon. I had 4 m/c's myself and i know that it is very depressing. Fingers are crost that all your hard work will pay off soon
    Mara, Hopefully they get your tablet levels right soon. Not good about the weight gain. Funny thing when you have the right neo level you put on weight, and when you have the wrong throx levels you put on weight. If only there was a happy medium where we could be and not put on weight.

    Am going to start shopping around for a new GP. Just realised the other day that she has no idea what so ever on what she is talking about nor has she documented anything right. Drives me insane having to sit threw the same q's all the time then finally get onto what we are talking about.
    Mara - Do you know any good GP's out towards Ipswich way at all?

    Bathsheba - Hope your test results come back good and you get to drop some tablets. Fingers crost

  9. #153

    Default Hi guys

    Hi Mara and Jas

    Thanks for your messages and nice welcome; I'm feeling much better this week thanks. Hopefully things are on the mend ...my calcium levels have been coming up (yay!!) so they are reducing doses of caltrex and rocaltrol...now just playing the blood test game.

    I had also gone very underactive so they increased dosage of thyroxin to 150mg...fingers crossed that's right for me because I can feel the weight creeping back on....(one/two kilos a month since I started the PTU before the op...hopefully the thryoixin halts it)

    Was anyone else having massive hair loss?? (like big clumps every time you wash or brush your hair??)

    Mara do they have any idea why your calcium has dipped again?? Were you feeling a bit funny with it...tingles in hands and feet??

    Kath x

  10. #154

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    Kath, my hair fell out around when i was first diaognosed with graves diesease. Not all of it but most of it. My hair was quite thick and now it is very thin. Hope yours stops falling out soon

  11. #155

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    My results were not good. My T4 has gone up from 21 to 26 There is also still no traces of TSH My liver function was good so at least the Carbimazole isn't wreeking havoc. Oh well... maybe I'll lose some weight for summer. I'm 68... 65 is ideal. My hair is good though... gone back to being thick... not coming out when I wash it. Appointment with Endo in Dec. He is busy. Going to go back to having acupuncture... last time I had that (every weekend for several months) my T4 went way down to 13.

  12. #156

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    Bathsheba - How are you feeling? Hope the acupuncture works for you this time around as well.

    Well i took myself off my tablets. My doctor went away and they were recking havoic with some other tablets that i had to take for a month. So it is off today to have my bloods done again to see what my levels are looking like - i have been off the tablets for 2 months. My doctor is not impressed but she wants to radiate and i would rather avoid that if i could. My eldest son is also got to be tested today as it looks like he has a thyroid problem as well.

    Serene - How are you and bubba going? How are your levels? Hoping they stayed in the normal ranges for you.
    Kath - How are you going? Have your levels come into good ranges yet?

  13. #157

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    Hi Jas I took myself of my tablets for a few months too last year... my doctor said i was a "silly girl" (I was 39 LOL). In retrospect I probably should have kept taking at least 1 tablet per day... it might have stopped it going up again this year. Now I take carbimazole and they seem to be agreeing with me. Am currently taking 3 per day.

    I feel well although i am noticing (maybe it's my imagination) that my thyroid seems a bit puffier than last year. I don't have much fat around my neck... it wasn't enlarged last year... but the past few months it seems to have grown a bit Although wouldn't call it a goitre yet. I expect my doctor will send me for another scan.

    Ugh. It has really sunk in that this is for life. Last year I was still in denial... not anymore.

    I have only had a few sessions of acupuncture... money is a bit tight ATM. I really should have more.

  14. #158

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    Bathsheba - i have noticed that mine seems larger too - too me. Glad i am not the only one that feels like that. I havent mentioned it to my doctor yet i am hoping my some miracle that it will all magically disappear - lol guess i am going threw the denial stage. My weight seems to have stoped itself 20kg over where it is suppose to be and i have found that trying to lose it just doesnt work exercise and diet dont seem to be able to make it shift one way or the other.
    It is good that you have accepted it i think i am still a long way off acceptance at the moment

  15. #159

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    Hello all,
    I am also new to this forum. My sister suggested I join to see if anyone can fill in some gaps for me - I hope you dont mind. Just over 12 months ago I was diagnosed with graves disease, after having my first child - she was probably about 6month old when I first noticed the symptoms. I went to a specialist who told me in no uncertain terms that I had to give up breast feeding and go on these tablets. I didnt, and the symptoms went away somewhat, so I didnt worry about it. Now I suffer greatly from insomnia, and believe it is time to go on the tablets. So I went back to the specialist. One of my main concerns was that my husband and I want to have other children, so I asked the specialist about it. He told me (after flicking through several books) that the main concern with the tablets was the baby might develop a goitre, and not on the tablets, miscarriage. Can someone please let me know of anything else that could potentially happen - either on or off the tablets...So sorry about the long post.

  16. #160

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    Hi JoeyJ

    Firstly, its lovely to see you here. We all know what youre going through.

    OK stay ON the tablets. If you do not control your thyroid, this condition can KILL YOU.

    OK shock spiel over.

    Seriously though. Without the medication you are at risk of heart damage, liver and kidney damage and eventually death. THe weightloss is a great side effect, but its also dangerous. You go through muscle wastage. Graves also tends to make people infertile. Youre right. The insomnia is from the disease. I was sleeping less than 2 hours a day for over 2 years because mine was just so out of control even with the meds.

    WIth the tablets, you may gain a little weight, but its better than the other issues. All you need to look out for are the signs of a viral throat infection. Sounds silly, but its the sign of a very rare but dangerous complication. If you fall pg on the meds (theres really nothing saying you cant... Even Breastfeeding is essentially OK, as long as you are properly cared for), your Obstetrician should have you placed in the care of an endo who caters specifically to that situation. You will be closely monitored, and baby will be too. Usually, Graves goes into remission during pregnancy, and often once its in remission, it stays there.


    Joey Feel free to email me directly at [email protected] if you need some more help that youre not keen on posting.





    Well, I havent posted in a while! I had my thyroidectomy in August. I guess it went well. I was in hospital for 5 days cos they damaged the paras, and after I was released, 4 weeks later I went into calcium crisis, so now Im taking a truck load of caltrate and calcitriol every day, and Ive been back in hospital twice since with pseudohypoparathyroidism and low calcium levels. Not pleasant, but I guess its safer than Tyroid storm. My endo has told me that I am not to fall pregnant again on any terms. Im just too sick. yay. Im at the point now where I really dont care as long as I can finish my Nursing degree. I lost my AIN job because of this, and Ive only just gone back to K-Mart after almost 2 years off work sick. By weight has peaked at 118kg, and my diabetic nurse is not impressed, but the endo told her to shove it. Ive been on prednisone for 18 months and just had my thyroid out. Im bound to gain at least a bit!
    My t4 is sitting very low right now though, so it looks like Im getting my thyroxine increased.


    As for good news, Bubba is totally well and I am very happy about that. She is still small (8.3 kg at 14 months), but is developng normally and doesnt need to be under paediatric care any more, my endo visits with her are enough. I was able to keep breastfeeding! I love that fact. I was told I would not be able to at all, and here I am with a 14 month old who is STILL breastfeed! Im so very proud of myself.


    How is everyone else faring? Jas? Bath?


    Merry Xmas all!

  17. #161

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    Hi Everyone,

    Joeyj, What meds have the endo put you on? My endo was a professor of Endochinology at RBWH so I pretty much trusted him. He said Propylthiouracil (PTU) was the better drug to be on whilst pregnant. He also said that babies getting a goitre because of it isn't really true. I had a happy healthy preg while taking PTU and in fact the pregnancy put the graves into remission somewhat so I was only having to take half a tablet per day. Also bub had to have a blood test at 3 weeks to make sure her thyroid hormones were okay and she was perfectly fine. Best of luck with everything.

    Oh Hellrazed, you had a tough tough time with the hypocalcaemia. Hmmm, I know what it's like taking truckloads of caltrate and calcitriol. Even now, nearly 12 months after my thyroidectomy, although my parathyroids are functioning okay again my blood calcium levels are still a little low and I still get the tingling in my hands and feet every now and then.
    I hope you're feeling better soon!

  18. #162

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    Hi girls. Well as we probably know forgetfulness is yet another symptom of Graves Disease... which is probably why I totally forgot my last appointment with my Endo! I have booked another for the first week of January. In the meantime I've been ok. The heat severely affects me I am sick of hearing myself whinge about it... but lucky we've have a few mild nights so i've been sleeping well.
    My weight has stabilised... i'm certainly not losing it like last summer... I'm 170cm tall and my weight (last time I was at the GP) was 66 kilos which is right for me. Heart-rate normal... no racing. No shakes or tremors. Hair good, not falling out. All-in-all I suspect i have plateaued or maybe even improving... although I have done a 'naughty' thing and upped my medication. I was taking 3 carbimazoles (15mg) a day until my previous bloodtest (which was not good at 26 I think) so my GP said I should increase it... to 4... but I've been taking 5 per day (for the past 2 months or so) and since then i've been feeling great... get much better sleep. I had my bloods taken a few days prior to that forgotten appointment but I still don't know what the levels were. My GP rings me if they are really bad... I can only assume they are either good, level, or improved. maybe I am a little worried that they are worse because if they are my specialist will no doubt start talking more radical therapy. My puffiness around my neck doesn't seem any worse than the last time I posted in here. Compared to most Graves sufferers i really don't think I need an op... but I worry about doctors... ever since having babies I have lost a bit of trust... long story...

    Welcome Joey! Hey, I also was able to breast feed on PTU I also fell pregnant with twins after my Graves diagnosis... so don't worry yet

    Only other update is that i'm back taking regular L-Carnitine to help with fatigue... maybe it's placebo but it really seems to help!

    Good to hear how everyone is going... Hellrazed, Mara, jas

    ETA: my white cell count has been checked several times... it's fine... carbimazole seems to agree with me thankfully!
    Last edited by Bathsheba; December 22nd, 2009 at 03:49 PM.

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