graves Disease

[Bubbalee]

Hi everyone,

I thought I would pop in and introduce myself. My name is Kim and I was diagnosed with Graves after post-partum thyroiditis. DS is now almost 13 months old.

I had been on Neo and Inderal but had to come off the meds for the last 5 days as I went hypo. I am booked into see a surgeon on the 12th Feb and have deiced to have my thyroid out. I can't keep loving my life in limbo and needing my Mum to help me care for DS.

[Maree]

Hi. This thread has been informative for me. I was just diagnosed with Grave's Disease. My son is 8 months old. After giving birth I was pleased to be losing weight but despite eating everything in sight I dropped to 50kg, which was at least 10kg below my pre-pregnancy weight. The Endocrinologist thought it might be post-partum thyroiditis but the anitbody test just came back positive. He wants to start me on meds but I am worried about the weight gain and milk drying up.

I didn't think I was very symptomatic (I have always been the anxious type with insomnia) but reading this thread I know I am itchy (neck and scalp), have knee joint pain (which is new) and am not menstruating - haven't since I gave birth. Also my eyes have been dry and irritated, which was the first sign I had. Hard to know what is Graves and what isn't.

I am also hoping to have another bub so I hope this doesn't affect my chances.

Hope you are all managing well.

[jas08]

Hi girls how are you all going?
Maree - i am glad that you find this thread informative. When i was first diognosed there was no information that made sense to me. This way you can see how other people deal with having the illness and how they cope.
Hi kim - i hope your appointment went well. Let us know how you are getting on.
Spice - glad that the op was a success. How is it all going now? Is your breathing feeling less obstructed?
serene - how is bubba going? did you get your appointment in the end?
I am still floating around here. My weight seems to have stablised 20kg over my healthy weight range which is a problem but something i am trying to change. Still on the neo tablets and apparently according to the specialist i will be on them until Ethan is older. I have been thinking of getting a second opinion as the graves acts up when it wants to and is still playing havoic on my body.
How is everyone else getting on? Any news?

[HellRazeD]

Hi all!
Yep Im still here too...
I got Simone in to see the paed... I went to the office, and stood there until they found the referral. Got an appointment 3 days later too for the inconvenience. Good news it that she does not appear to have any significant thyroid damage, though she has some liver and splenic damage from the neo. Nothing major though, and Doc thinks it will sort itself out within a coupe of months once I stop breastfeeding. She also said it is safe for me to do so, well, actually, its better for her to be breastfed and lower the risk of her developing T1DM and other autoimmune disorders,than it is to stop breastfeeding and lower her exposure to the meds.

Unfortunately, I am back into Thyroid storm. Even with beta-blockers, my HR is over 90. I am taking 12 neo per day, and it is doing very little. I am on a 12000kj/day diet (RDI is only 8000), and i have still lost a kilo.. At least its only one this time though. During my pregnancy, I got back up to 109kg... Still better than the previous 117kg, and I am now 107kg.

But so far the neo isnt working as well as it should, so the offending gland will probably be removed. As far as my endo is concerned, RAI isnt an option, as I have 3 youngins... Fair enough. As far as I am concerned. I just want it to stop, though I am not sure I want to be on Thyroxine all my life. Not sure what to think. But at least now I know why my weight fluctuated so wildly for so long... But I dont want to get down to 45kg again... It be happy at 75 I think!

I have been off work now for 3 months, and I am hanging to get back. I am missing my wage. it may be small ($125 a fortnight), but it is better than nothing. It doesnt help that the ex is not paying his CHild support at the moment. The CSA is useless! It has been 4 months, and the only reason they have not got it is because they refuse to believe that he has a new job!! so I am down close to $550 a month, making the anxiety side of this worse.

Maree!! Welcome to the club! Its a very frustrating disease, and unfortunately it can rule your life, but this is a supportive group for you. You are more than welcome to PM any of us with questions. As for the meds, it has been 7 months for me, and I am still breastfeeding, with an abundance of milk. My endo recommended neo again because of this, and so far it seems to be ok. DOnt worry about the weight gain, worry about the fact that this disease can KILL YOU if left untreated. I am already over 100kg, so forgive me for saying I think I have a bit more reason to worry about weight gain than you do. THe weight gain associated with the meds is only slight, and is the body's way of evening itself back out. You are unlikely to suddenly balloon out to 90kg unless your thyroid suddenly becomes drastically suppressed. I hate to sound so harsh, but I am a nurse, and it drives me NUTS when ppl reject a treatment because of weight gain. But enough of my soap-box (maybe CRATE... too fat for a soapie to hold me ), How has it worked out for you?

Jas!! Bummer about the long-term regime! Is this Dr at least doing regular bloods to keep an eye on you? Apparently the Neo is associated with ups and downs more than the PTU?? Good luck with your second opinion.

Spice!!How was the surgery? I am desperate for someone elses thoughts on it... Im terrified!

[kitten2b]

Hi

I don't have Graves but I do have to have a hemithyroidectomy in July due to a 4 cm cyst in the thyriod which is full of blood and keeps filling. I have had it biopsied 5 times now and it keeps filling the largest being nearly 6 cms - so sizable, it is unstable and could just burst any time it wishes. Bit scared of having half of my thryiod gland out and also of the tests next week, tubes up nose with camera one.

[~mamaspice~]

Hi everyone and welcome to the newbies of this thread!

Jas I am doing well thanks. The obstructed breathing feeling didn't last too long at all. Was practically gone by 10 days post op. Is there any reason why your endo isn't recommending RAI or a thyroidectomy? I know how you feel about the weight issues. I am 35 kilos overweight now. Put on about another 6 kilo's since my Op in January But I think It's stabalised now and I'm on the right dose of thyroxine so now i guess the rest is up to me . . .

Hellrazd, what would you like to know? Well I'm going to be honest and tell you the warts and all story. As you know I had a total thyroidectomy and I have to say that 4.5 months later I am feeling really good, so I'm glad I had it done. I also look at it this way. It's a lot better to be on thyroxine for the rest of my life than the heavier anti-thyroid drugs which can cause other problems long term. Also better to now be pretty much stable and not having to worry about the graves playing up or having to adjust my med dosage all the time.
As for the operation itself. It was pretty straight forward and i was up and out of bed shuffling myself off to the toilet just a couple of hours later. (I refused to resort to using a bed pan, lol) I had very little pain in the operation site, but I did find the drainage tubes hanging out of each side of my neck annoying. Thankfully, they were taken out about 36 hours after the Op. Unfortunately my hospital stay ended up being a week because my parathyroid glands decided that they wanted to go into shock so i ended up getting quite severe hypocalcaemia. That was pretty weird - very tingly feeling in my hands, feet and lips. And one morning I woke up and It was like my facial muscles were paralised. I had to have a few rounds of calicum and activated vitamin D intraveniously, and I had to have 4 hourly blood tests to monitor the levels (that poor vein!) I was also put on 6 caltrate and 6 calcitriol tablets per day which I had to stay on for a few weeks. The thing that was hardest about my Op and the time I was in hospital was I was feeling very down and teary and emotional and quite irrational. I thought it was just the stress of the Op and being in hospital that caused this but I also later found out that one of the symptoms of hypocalcaemia is depression.

All that aside though, I AM happy i had thre Op and I AM happy that I chose the total thyroidectomy over thre RAI because I would'nt have been able to go within a meter of Charli for 10-12 days after the RAI and that would be inpossible. Plus my endo said I'd probably need more than 1 round of RAI to cure my condition.
Hope this helps!

Kitten2B, please don't be scared about the Op. As you are only having a partial thyroidectomy you are much less likely to have the hypocalcaemia issue that I had so you'll be fine. Also, don't worry about the camera up your nose to check your vocal chords. They spray an anaesthetic spray up your nose first and you don't feel a thing. Plus the process is very quick and it's quite interresting to see your own vocal chords on the TV screen (well I thought so anyway, lol)

Ooops I didn't mean to make this an essay . . .

[milka]

Hi Everyone,

I thought I'd add my story in here too as I know when I was first diagnosed I use to like to have a read and hear other good news stories!

I was diagnosed with graves disease and Hyperthyroidism in February 2008. My DH & I had been trying to fall pregnant since our miscarriage the previous October. Anyway the one thing that led me to the doctor was that AF had decided to go away and then my health went down hill from there. Was on neo and the heart tablets (can't remember the name) and my endo advised we do not try to fall pregnant on such a high dose of neo. So I stayed on neo for a while and unfortunatley 7 months later my levels were still playing havoc, I was still feeling terrible, my eye balls were popping out and it seemed the neo did not want to work.

After some research and speaking to various health professionals, plus we really wanted a baby, I opted for a total thyroidectomy and had that Oct 08. The operation was a success! I was only in hosptial one night and other than my vocal cords putting up a little fight (and making my voice sound funny for a couple of weeks) all as good.

In Jan this year (3 months later) we fell pregnant!! The endo was happy as thryoxine is safe for the baby and it only took a couple of visits to get my levels correct...

So for anyone reading this thread who has graves and is trying to fall pregnant stay positive as it can happen. My ob is organising a few more ultrasounds as I still have the graves antibody and we just need to be prepared should it cross the placenta to the baby. If it does, it is not too much of a drama as long as an endo is on hand to help treat.

Good Luck to everyone else with graves and/or Hyper/Hypothyroidism

[~mamaspice~]

Hi Milka, congrats on your pregnancy!

Isn't it amazing how you had a total thyoidectomy and only needed one night in hospital and when I had my total thyroidectomy back in january I was stuck in there for almost a whole week! My vocal chords were totally uneffected. My voice didn't change at all. But I had the whole para-thyroid trauma problems and subsequent hypocalcaemia. Did you have much a goitre before the op? I had quite a large one and I wonder if that had something to do with the fact of my para-thyroids playing up as they were probably disturbed more during the thyroid removal.

[milka]

Hi Spice,

It is funny how the same operation can effect people so differently. You could be on to something about the goitre as I did not have anything goitre concerns.

I'm glad in the end it all worked out well for you!

All the best

[jas08]

Serene - isnt it funny how different doctors tell you different things, maybe i should of went to a different doctor in the first place. I was told that i couldnt bf Ethan after the first 6 weeks because of the tablets and i was on the same level as you. Makes you wonder. How is bubba going, hope all the things sort them selves out, i didnt even think to get Ethan tested i might have to look into it.
Spice - My specialist is hell bent on doing rai but not until Ethan is older, so another couple of years. I would probably rather the surgery though as it sounds alot quicker and more efficent. They havent said how many rounds of rai i would have to go threw yet. I was told 24 hours at first was all i would need to stay away from e for until further down the track when they told me 2 weeks. Dont know where to look for a second oppinon.
Milka - Congrats on your pregnancy. I hope it all goes well for you. Do you know what bubs is?

[HellRazeD]

Hi Jas, Yes the doc said that normally she would not recommend it but as I have also got type 1 Diabetes, the benefits of her breastfeeding far outweigh the risk. But if I have to go up to 16 of the things again, then I have to stop. I was on them while I was pregnant too, and a higher dose, so I guess it just makes too little difference to matter. Simone is having regular checks too though, so at least she is being looked after.

Milka BIIIG CONGRATS girl! it all goes well for you. PM me if you need any support.

Spice the Hypocalcaemia is a b!tch isnt it... Its hard caring for pts with it sometimes, most of the time you can rationally and calmly explain to them what is going on, but sometimes you get someone who is downright irrational about it. Glad to hear it is sorting itself out though.

Well, I am back on the 12000kJ diet, and I am still losing weight... only 1kg, but as far as my endo is concerned, thats not good. I may be 107kg, but he wants me to STAY there for the time being. I am not to exert myself, as even with the beta-blockers (inderal/propanolol) I still have a resting HR of over 95, and bp 166/94. So I am just sitting on my ar$e crocheting, sewing, making the baby laugh... I have a great mummys group - from here actually!- though, and they are my lifeline. Honestly, if I didnt have them, I think I would have shot through by now.

to everyone!
s

[jas08]

serene - Hope your tablets start working soon, or that they decide to take it out all together. Sometime i wish i was losing weight as easy as before. I am still at the same weight although without an extra 13cm. Not quite sure how that works but thank god for measuring tapes otherwise i would be going crazy.

My doctor is a pain to say the least. I dont want to hear about how i am not eating properly, i eat just fine and exercise like crazy most days. She says i am eating all the wrong foods and that is why i have stayed the same weight. I wish wouldnt that mean i would be gaining weight?

[HellRazeD]

Thanks Jas.
Id be telling your doctor that! Exactly that! She may be doing it to some other patients too, who cannot take it as well a you. I hate working with doctors that are like that!!

Unfortunately, I have been bumped to 12 carbimazone, and no effect. My endo rang me 8am Monday morning to tell me my Friday blood results are back. And its not good. I am to stop breastfeeding by week's out, increase my heart meds, and go for a nuclear scan within 2 weeks. Im also on strict orders to do nothing, as my HR and BP are so high, that I could stroke out.

We are looking at the surgery at the moment, because I have to be well before September, no 2 ways about it. I have my final ever uni placement then, and I am not putting it off again. After it I will be a fully registered nurse (now I am an EN). Not the result I was looking for, but I guess its necessary.


Good luck all.

S

[~mamaspice~]

Hi ladies,

Serene, you are having such a tough time your poor body is going through so much. Your heart must be unders o much stress and also not to mention other things like the possibility of having bone density issues etc. I definately think you should have a total thyroidectomy and be done with it.

[jas08]

Hugs to you serene, have you got someone to watch litte bubba while you have the test and for at least 24 hours after? You cant go near her unfortuntely in that time frame.
Id for for the surgury too if i was you. Yay for the last uni placement i wish i was as close to finishing my degree but i have been slack
My neo are working at the moment and have been cut back to 1in the morning and one at night - seems pointless to me. They have slowed mine down too far with too many tablets so now they are cutting them back and seeing if it stays cut back. I hope so. Was suppose to go for blood tests this week but it is going to have to wait until school goes back. I cant look after my 4 and have a blood test at the same time - stupid doctor i told her about the holidays. Really need to find a new gp but i dont even know where to look seeings she is looking after my graves with specialist at the other end of the phone.
Sorry for the complaints, yours is alot worse then mine, wish there was some way to help.

[Bathsheba]

Maybe I am in denial but I still have Graves... but compared to most of you it seems I have a mildish case. Up until recently I was taking PTU... but when I weaned my 2yo my GP decided to put me on neo-mercazole (a type of carbimazole). My last blood test showed a TSH (I think that was the one) level of 25... so only a little bit above normal) it was 47 at it's worst. It was brought down with just 3 PTU tablets a day... which I often forgot to take (I am shocking with medication) and Carnitine (recommended by my natropath) and acupuncture. It came down from a near-thryroid storm level to nearly normal within about 3 months. My Endo was amazed. Then because the PTU made me feel crappy I stopped taking them altogether... my Endo was very angry with me... but was surprised my level had fallen to within a normal range. He convinced me to just take 1 PTU a day and now my level is up to 25 (normal is up to 22 I think). I had blood taken last weekend and get my result tonight. I suspect that my level is still slightly raised. I am currently taking 3 neos a day. The idea of having my thyroid totally removed really freaks me out to be honest... but I guess i could think differently if I had symptoms as bad as some of you. My weight is fairly stable. When I was very thyro-toxic (level 47) I got down to about 62kg. I am 170cm with a solid skeleton so this made me slightly gaunt. Now I am 68kg and a very good weight. I haven't noticed much fluctunation.


Anyhow I'll post my result when i get it tonight. that it's a good one!!!

ETA: I bought myself a heart rate monitor. My resting HR can get as low as 60bpm (beats per minute) but my "pottering around the house" HR is usually over 100. It got up to 180 while pushing my pram up a hill once!!!

[Bengal]

Hi ladies

I am popping in to subscribe to this thread, I will be back later to read everyone's history's and share my Graves experience

[jas08]

Bathsheba - sometimes i think we all go into denial because it is easy to overlook the illness on your good days. There are days that i pass most of my symptoms off because i have 4 boys to take care of. I am on 2 ptu tablets a day. Good luck with your results tonight i hope they come back to be closer to normal range. You must be one of the lucky ones.
wouldloveabubba - Hi and welcome to our thread. Cant wait to hear about your graves journey