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Hi there, i have not long ago been diagnosed with Graves disease - a thyroid disease that not many people get. So i was wondering if anyone else has had it or knows much about it. I have to go for blood tests every month to check my levels and take 6 thyroid tablets plus 2 heart tablets a day. would love to chat to other people about it.
Hey,
I have the opposite - Hashimoto's. Your immune system is attacking the thyroxine stimulating hormone detectors in your body, which is making your body think there isn't enough thyroxine, which in turn makes your thyroid gland make too much. My immune system attacks my thyroid gland itself, so it can't make enough thyroxine. My condition is easier to treat though (just take synthetic thyroxine).
Don't feel too lonely, thyroid problems are very common and Graves is the most common cause of hyperthyroidism, worldwide. George Bush Snr and Barbara Bush both have Graves!
The most important things for you just now are to take your meds, keep getting your bloods checked and have eye tests annually to make sure your eyes are ok. They generally let you come off meds after a while (6-24 months i think) but it depends on what you're on and how long you were ill beforehand and so on. If your Graves keeps coming back there are other options (radioactive iodine therapy or surgery) which would likely make you hypothyroid but as i said, that's easier to treat.
There are a few ladies dealing with both hypo and hyper thyroid issues on here, hopefully they'll see your thread soon :)
Bx
Hi I have just been diagnosed as well. I have had no symptoms at all. Mine was picked up during a blood test for something else. I am taking low dose medication 3 times a day which is apparently safe while breastfeeding (I have a 4 mth old). I don't know much about it but am hoping I don't need the medicaion for long. I have to go back to the specialist in 3 weeks.
Did you have many symptoms?
kim
hello,
thank for replying.
Bx - i was not not many ppl have it, glad to know it isnt that uncommon now. my sister has the same one as you. she is suppose to gain weight but with her other problems she loses it.
Kim73 - i wasnt allowed to continue breast feeding. i am on a high dose and taking heart tablets as well. i have lots of symtoms. i guess i was lucky i lost all my pregnancy weight in a matter of weeks which i had never done before and i got nearly back to what i was 8 years ago. Funnily enough that was one of the first things that sent off alarm bells. I was getting a marina inserted when the nurse told me i should see my doctor about my irratic heart beat. It had been high since my last pregnacy 2 years before hand so i hadnt thought much of it. That was how i came to be diognosed. My doctor hooked my up to a heart machine and rang the specialist. I went for blood tests and a radioactive thyroid test. All came back positve to graves. I get so that i cant sleep as my heart is too active at times and other times i can barely get up. My vison is funny and sometimes i dont see things. I have a hard time remembering what i have just done and at times they can see my thryoid underneath my skin. i have got another ultasound on my throid on the weekend and a specialist appointment this afternoon. i suspect that i have had it for a while before it was picked up. i will be on the medication for at least 18 months at this stage.
look forward to getting to know you more.
I put in Grave's disease in the seach and this thread popped up! I too have just ben diagnosed with Grave's Disease. I went to the doctor as AF had gone missing and my doctor did some blood tests. Then it came back that my thyroids were overactive and I was booked into a specialist. Then within a matter of days I got really sick and started with all of the symptoms - excessively fast heart beat called tachycardia, leg weaknss, trouble with vision and the list goes on... I then went back to the doctor and my next blood test showed my thyroid levels had tripled to a dangerous level so she started me on the thyroid and heart medication that day.
I have since seen my specialist twice and will go back in another 6 weeks. We are very much TTC and I have been advised my my specialist to wait until my I am under control and my medication has either stopped or a smaller dosage as the medication is strong and apparently can cause miscarriage :(
Can anyone with Grave's tell me how long it took you to conceive once you were diagnosed?
Hi there milka
i first suspect i had graves after my 3rd son was born, it wasnt diagnosed until after my 4th. I fell pg with my 4th 15 months after wards. goodluck with ttc - i have been on my tablets for 3 months now and they have just been doubled. Had to stop taking them yesterday though cause i got a really sore throat - it is gone today.
i was told you will be on tablets for 18 months when all the levels go back to normal. the medication is strong i had to stop breast feeding because of the tablets.
Hi Jas I just found your thread as I was going to start one about graves myself as I am at a point where I have to choose either thyroidectomy or radio-active iodine treatment and wanted peoples opinions.
To give you a rundown I was diagnosed with graves 5 years ago. I knew something wasn't quite right when I was rapidly losing weight (although I was eating like a horse), i was moody, couldnt sleep, had the shakes, heat intolerant and my RESTING heart rate was a whopping 145 beats per minute.
I was put on propylthiouracil (PTU) and a beta blocker (heart drug). Initially 6 tabs of PTU per day and as the condition improved went all the way down to needing only half a tab per day. The graves settled down quite nicely for a while (about 2 years) but then decided to play up again.
Unfortunately for me, once my meds kicked in I wacked on an aweful amount of weight quite quickly. I lost a lot of lean muscle whilst the graves was really making my metabolism go berserk(the graves was playing up so bad that even though i was stuffing myself silly It was just burning up all my lean muscle tissue. My thighs got realyl weak and even getting in and out of a car was an effort) so once the meds kicked in I had less lean muscle then before, and therefore my body burn't up much less energy. So for me, the only good side effect of graves ( losing weight whilst eating like a horse) was short lived.
About 20% of people are lucky enough to go into remission within 12 months of taking meds. The other 80% of us need to seek alternative treatment as you cannot stay on the meds forever as they can increase your risk of developing other auto-immune diseases such as lupus, and the can also attack your bone marrow & white blood cells.
Not sure if and when you may be considering another pregnany, but at the time I fell preg with my little girl the graves was playing up moderately. I had to be monitored closely in early preg and make sure I was taking enough meds to keep it under control. Luckily as the pregnancy progressed it actually suppressed the condition and I only had to take half a tab per day again. Charli was born perfect.
If you are severly hyperthyroid during pregnancy you do have a much greater risk of miscarriage. Also there is an increased risk of bubs suffering cardiac arrest, being born prem and also having physical and/or mental handicap.
My graves has played up post-pregnancy (which is very common) and I believe it's been a contributing factor to my milk supply probs and also the fact that I got postnatal depression (graves disease mums are twice as likely to get PND).
My Endochrinologist thinks it is time for me to opt for a definitive treatment. I have to choose between thyroidectomy or radio-active iodine treatment. The latter is the prefered option apparently these days but it means you cannot conceive a child for a minimum of 6 months after having treatment. And I can't help but wonder would it effect my eggs in some way? it is mean't to be safe, but just how many child bearing age women have had the radio-active iodine treatment??? My mum (who also had graves but didn't develope it until her 40's) had the radio-acive iodine but she had already completed her family by then. And what if Charli accidently comes into contact with me for the 11 days post treatment where I have to stay away from her??? Having the radio-active iodine would also mean putting my TTC plans on hold whereas if I have the thyroidectomy once it is done I can start TTC #2 pretty much straight away.
I have to make up my mind by next tueday :wall: Any thoughts anyone???
Oh Charli'smumma! :hug: What a lot you've been through!
I don't have experience of hyperthyroidism, but i do now have over a year of hypothyroidism and the treatment for that behind me now, and honestly, if i were you i'd have the surgery.
My life, as someone who will ALWAYS have to take thyroxine, is really not so bad at all. Yes, sure i'd rather my thyroid worked properly, or that my immune system did (mine is autoimmune), but really, when you look at it, i take a tiny pill each morning and....that's it. It's important that i take my meds, but if i miss it for a day or two, because it has such a long serum life (it's half life is 7 days so a week from today half of today's drug will still be in my system) i am not at serious risk (though it's not a good idea and i endeavour not to!). The pills work well for me. I have had only one dosage adjustment and have been stable for 10 months at this dosage.
My sister has the same condition but is further down the road (Hashimotos disease is progressive and eventually a sufferer can end up with their immune system having completely disabled their thyroid gland) and though she takes a much higher dose than me (i'm on 50mcgm/day, she's on 200mcgm/day) she too is stable on that dose and has been for a number of years.
I know people who have had the radioactive treatment and ended up having to take thyroxine anyway, in fact, i don't think i know anyone who has been treated that way and NOT ended up on some level of thyroxine replacement. But then, if you have the thyroidectomy it is gone forever and your life would be at risk if you couldn't have your meds for some reason, not immediately, but for sure. With the iodine treatment there is usually SOME function left, perhaps not enough for a person to be unmedicated, but enough to prevent the person dying without thyroxine therapy.
Because the iodine is radioactive and the thyroid is what uses iodine in the body other tissues are relatively unaffected long-term, but i too would be concerned about potential effects on your ovaries and such, especially because you would want to ttc as soon as you could. The immediate aftermath of the treatment would be very hard for me too - not being able to sleep next to DP or hold DD for 11 days would be awful, and i doubt DD would understand why mumma wasn't wanting to hold her, and all the "don't share utensils" and "flush the loo twice" stuff would also make me feel, i don't know, toxic.
Then again, surgery is not a small undertaking either, and the recovery from that would also involve hassle and pain and even if you were theoretically able to be with your DD, you might not feel physically up to it. I have also heard that for some (10%?) the parathyroid gland is damaged and those people have to take calcium supplements as well as thyroxine.
I too have to be monitored very closely during pregnancy as thyroxine deficiency in the 1st tri can have pretty catastrophic effects too, but in real terms it's a few extra blood tests, and ATM i'm not feeling daunted by it as i think about ttc#2.
I wish you luck with your decision, it's not an easy one. More :hug: for you.
Bx
Hi Hoobley, thanks so much for your reply.
Yes regardless of whether I have the thyroidectomy or the RAI I will have about an 80% chance of needing to take thyroxine for the rest of my life. I can handle that though :). With the thyroidectomy they won't remove the whole thyroid, they'll take about 2 thirds.
My endo in Brisbane (who is the head of endochrinology in Queensland) always said he thought the thyroidectomy was the better choice for me, whereas the new endo I'm seeing here on the Gold Coast is saying that she thinks RAI is the prefered option. I'm waiting for a call back from my original endo as I want to ask him about the reasons why he thought thyroidectomy was best for me, so I'll see what he says when he calls back.
I think I am starting to lean towards thyroidectomy but I'm not sure how long I will have to wait to have this proceedure done.
I will keep you posted
thanks :hug: and take care.
My mum has Graves Disease. Shes on medication for it and has pretty much brought her back to normal.
Charli'smumma i know many endo's like to do the surgery on women who are still of childbearing age, because it removes any potential problems re: babies etc. If you already have a kid you cannot be in close physical contact with them for the first few weeks, and if you fall pregnant within 6 months it can be pretty much horrifically disastrous for the foetus - NO contraceptive is 100%, only 6 months of abstinence would be the sure thing, and it might cause problems within a relationship to have to do that.
Thyroid problems are VERY common in post-menopausal women, women who do NOT have to care for a baby 24/7, will NOT fall PG, accidentally or not. But then again lots of doctors like to use the treatment they themselves are most familiar with, because they've had more practice and experience with that, and feel most confident with it. It could be your old endo either sees more young patients or has a seperate protocol for younger patients. Let us know how you go.
Bx
Hi Hoobley, got a call back from my old endo. He said that I have good reason to opt for surgery as opposed to RAI. Firstly, like you said - he said I have a young baby to care for and the RAI treatment would make it very difficult. Also he said that because of the size of my thyroid (I have a pretty noticeable goitre) it is likely that one lot of RAI would not be enough and if I have to have a second lot, I would have to put my TTC plans on hold for for a significant length of time.
I've made up my mind. When I go to see my new Endo on Tuesday I'll be getting a referal to a surgeon, not a radiologist.
It sounds like you've done all your homework and made the best decision for yourself and your family hun. I hope your endo is supportive and your referral is quick. I also had a goitre after DD was born but luckily mine vanished with treatment (yours is overgrowing because your body doesn't think there's enough, mine was overgrowing because it was trying to compensate for the attack - treating the deficiency cured my goitre - it's only slightly enlarged on the right now, was once the size of a large grapfruit!).
Best of luck with your surgery and recovery - you're going to feel GREAT once you're stabilised on thyroxine! Let us know how you get on.
Bx
Thanks Hoobley, you are such a sweetie. I started to develope a goitre when I was about 12 but it's gotten larger since the Graves decided to make itself known when I was 26.
You are very knowledgable. You work in the medical profession I take it???
Jas I am so sorry I highjacked your thread for a while there. let us know how you are going :)
Hi,
After my second son my thyroid became overactive and the doctor called it postnatal thyrotoxicosis. I didn't go onto medications or seeking specialists, I had blood tests and we kept an eye on it. It cleared up after a couple of months. After my third son I had the same problem except I had antibodies this time and my GP referred me to a specialist. I haven't been tested since my fourth even though I was supposed to. Slack I know.
After my third bub the specialist said that I had Thyrotoxicosis and I was diagnosed with Graves disease and he put me on low dose meds (PTU). He also noted that I had a small goitre. The only symptoms I had/have on and off are excessive trips to the toilet for number twos, moodiness, anxiety (I have always had that anyway), elevated heart rate, excessive sweatiness. But I felt okay otherwise and during my last two ppregnancies my bloods were good. Do I have to keep my eye on this, will I always be a sufferer? Will symtoms get worse? Reading through your posts has worried me a little because I have been quite nonchalant (sp?) about it.
I was on the meds for a couple of months and then I just went off them. I was looking forward to going on meds at the time for my thyroid because I have a terrible skin condition that other specialists were not able to tell me what it was or effective treatment for it, and the endo said that it was possible my thyroid that was causing it. Unfortunately that was not the case because the meds didn't help my skin condition.
It is great to read a thread though on thyroid conditions I guess mine started after my pregnancies, as did my skin prob. I need to have my bloods done again to see if I need to go back on medication.
Karen
Hi Karen,
Graves can be serious, though it isn't always. Mild hyperthyroidism tends to cause the symptoms you have, and the main danger is heart damage because your heart is going harder and faster all the time. This can be serious and heart failure is a common outcome of untreated hyperthyroidism as over years and decades the muscle becomes damaged and weakened.
Though the symptoms don't feel too bothersome, really they are all a reflection of your body's metabolic rate pushing all your systems hard. It's like driving with your foot down on the gas the whole time. Eventually you crash.
Like all endocrine conditions it is far better to be treated than not. Some such problems (like diabetes) can be more or less immediately fatal if untreated but others (like thyroid or many adrenal problems) more usually give sufferers long term low level symptoms which over time can result in more serious things.
If i were you i'd be re-tested and this time take your meds. If you need further treatment, like Charli'smumma, you'll be offered that.
Graves disease is incurable and can be progressive, but many people have remission and some have it permanently. I would say because you've had repeated attacks you are unlikely to be such a person, but you might respond very well to treatment, one never knows. On the whole it is better to be treated than risk the more serious possibilities. If the drugs don't control your thyroid you can always have RAI treatment or surgery.
Don't panic - thyroid conditions CAN be serious, but with treatment they rarely are.
Best of luck.
Bx
Hi karen,
I agree with Hoobley. Definatley make sure you get your bloods done regularly and stay on the PTU or other treatment as long as you need to. Heart failure can be a real risk if the condition is left untreated. Do you have a beta blocker (such as propanolol or inverel) to take for your rapid heart rate if the PTU doesn't quite have that under control? The other thing too is the fact that having untreated graves increases your risk of developing osteoporosis (can't spell). I had a nasty fracture to my humerus (just under the shoulder) 22 months ago and when my endo saw that in my records she said it could be an indication that the graves is already beginning to compromise my bone strength. Not sure if she was being a little too dramatic, but it did freak me out a little.
take care
Tamara
Thank you Hoobley and Charli's mumma (sp?) for your advice you both seem very knowledgable. I do understand the importance of getting treatment for this condition. Even though I do feel better not knowing and assuming my bloods are ok, I will get retested within the next few weeks and fingers crossed.
My son is only 4 months and I don't need doctors hassling me at the moment about surgery, radioactive iodine, or even meds. I have a fear of surgeons (prev bad experience)
Seeing a specialist was overwhelming last time because it was just after my third and I was breastfeeding, but luckily the dr. said I only needed low dose meds to get it under control and it was ok for me to take and to continue feeding my son at the same time.
He did want me to be monitored though.
My Late Grandmother had Graves and my sister has Hashimotos (her thyroid is underactive) she is on meds all the time now.
Seems to run in both DP and my family, my partners twin sister has Hashimoto's and she has to have b12 (either b12 or b6) injections frequently. I know this sounds terrible but I would rather be underactive than overactive (if I have to have thyroid probs at all :( ) because at least an underactive thyroid doesn't involve surgery or radiocative iodine treatment to rectify it, then only to be on thyroxine for the rest of your life anyway because they have killed it.
I got told that some people with overactive thyroids become underactive by themselves.
Do you ladies know much about this?
Thank you so much
Karen xx
Charli'smumma, no i'm a single SAHM, i just read a lot! LOL. I know about thyroid things because i suffer myself and i always want to get a fuller picture than the doctor gives. He'll say "Oh, you're body doesn't like your thyroid, so it attacks it and stops it working" whereas in fact my immune system thinks i have an overactive thyroid and attacks it for that reason - it's almost like being allergic to my own thyroxine! Anyway, i know alot about birth and babies for the same reason - always been fascinated. I have an enquiring mind. LOL.
Karen, getting your bloods done is the first step. They will not re-diagnose active Graves until you are 6 months post partum as it can often take the body that long to overcome post-partum thyroiditis. In PP thyroiditis you OFTEN see a woman become hyperthyroid and then as the body takes control, hypothyroid, from which she usually slowly returns to normal - the answer in those cases is to test the blood every 1-3 months to check levels. Repeated attacks of THAT can lead to someone remaining permanently hypothyroid, depending on how aggresively the body reacts to the hyperthyroid phase of the illness.
With non-PG-related hyperthyroidism, like Graves, the problem is that your body is actively killing off the cells in your blood which read thyroxine levels. In my (Hashi's) body it is the thyroxine-producing cells that are attacked, so they can't make enough thyroxine, because my body thinks my thyroxine is a foreign invader, like a virus or infection, and kills it at source. With your body it's the thyroxine-detectors that are attacked, meaning your brain can't check it's own thyroxine levels (again, because it thinks they are foreign cells) - imagine a dip-stick snapped off just inside the oil tank - your brain NEVER sees how much there is so it tells your thyroid to make more and more. Because of that it's unlikely that your body will naturally slow your thyroid.
I know it's annoying being hyper, and i've only been hypo, unless you count my pregnancy (when i wasn't hyper but i was in remission from Hashi's (which was undiagnosed at that time, i just assumed i was lazy/greedy) so i was "normal" for the first time in years - i gained 6kg all-up, all after the 34th week, and lost it all the day she was born, within 4 months of her birth, because of BFing and my continued remission, i'd lost a further 18kg! Of course then i crashed badly as it returned with avengence and i was really ill for a few months, lost my milk, had bad joint pain etc., and was generally an UNHAPPY bunny until i got medicated). Try to look at it like this - if you are hyper now they will give you some drugs to control it. If you are still hyper in a few more months they will give you surgery or RAI treatment and then you WON'T be hyper anymore, but hypo. It's not incurable, it's just annoying. And hypo is incurable, but not nearly so annoying.
Hang in there hun, you'll be ok. :hug:
Bx
Hi Hoobley, you should go and do your midwifery degree like I'm going to :)
Charli'smumma i was enrolled to do it before i fell pregnant but TBH it's not really what i want. I need to be in this city, because DD has to be near her daddy, and the hospitals here are not where i'd want to be. The hospital where my midwives came from for my homebirth (you're booked for community care and then 2 community mw's come to catch the baby and your community team cover your AN and PP care) has a 58% c section rate for 1st time mums. And yeah, it's a teaching hospital which takes high risk referrals, but that's still not a good enough reason to me. More than half!?
Besides i'd rather write. Inside i'm a writer. I'm strongly considering writing a "Now You're PG" type manual with the TRUTH in it (rather than crap like the BF's guide which told me "absolutely get an epidural and if it's #1 consider a c-section, leave the vaginal birthing to the "experts"" *shakes head in disgust*). I like people and i love babies but i can't pretend i'd be able to watch women go in day after day, naively happy to have their baby cut or torn from them when they could have quite readily had a normal birth. It would kill me very slowly.
Bx
Hi Ladies,
well it cant be as uncommon as i was told it was. So much as been going on here so sorry that i missed all your earlier threads. My 7 year old son toped the cake on monday when he broke his arm!
Well i have my check up about a week ago now and low and behold the levels have increased again. I am waiting for the medication to take hold instead of making me ill. I found that last time i was on a high dose i got a really sore throat. My doctor put me on a half dose much to my specialist disapproval and they have put me back up.
I dont think that they understand how hard it is to look after 4 boys and have this illness as well. Mine wasnt diagnosed until after my 4th but started after i had my 3rd. Both my 3rd and my 4th were csections (the other pair were natural). I agree with you Hoobley most of the csections are elective or given for no real reason and are preventable. Mine unfortuately were not. My 3rd sons birth was really trumatic which kicked the graves into action he was cord prolapse, the 4th had to be born via emergency csection as well but he was born due to my health deteriatering very fast.
I got digonosed at 6 weeks post having bub. I think it depends on the type of tests that they make u go threw. i had to have a radiative test done when my bub was 6 weeks old - mind you no one told me that you couldnt go near children under the age of 6 for at least 24 hours makes it kinda hard when you have 3 under that age. i am glad to hear that i am not the only one who had to give up breast feeding etc, it depressed me to no end especially when my friend who had just had a bub as well kept going on about breast feeding. I think it is hard to find someone who understands unless they have even been there themself or know someone who has.
Hi Jas, Sorry to hear your little boy broke his arm :(
hey what meds have they got you on? Perhaps it is worth trying another one to see if it works better for you. I am taking PTU and it has worked okay for me so far, but you can't stay on it forwver so I will be having a thyroidectomy soon.
I hope the meds kick in for you soon :hug:
Hi jas,
Sorry about your littlie's bust arm! OUCH! I'm frantic enough when DD skins an elbow, i can't imagine how i'd feel if she'd broken a bone! :hug:
Graves disease is an autoimmune malfunction, so your traumatic birth (which BTW is one of the cases where c-section is a LIFE-SAVER - most vaginally born cord prolapse babies die or suffer brain damage from oxygen deprivation and even those who come through unscathed long-term usually need to be resussitated at birth, so ITA that it is the sort of situation c-sections are a blessing in!) will not have caused the Graves. They think (they don't really know) the reason pregnancy can bring these things on is because the body makes a higer level of natural steroids during pregnancy, to prevent the body from detecting that the baby is foreign (as it is genetically different to the mother's own tissues) and especially to prevent it rejecting the placenta (when the placenta IS attacked/rejected if it happens early it results in miscarriage, if it happens later it causes pre and full eclampsia). This higher level of natural steroids safe-guards the pregnancy and after the birth the levels drop dramatically (within a few weeks) and what CAN happen is that the body, regaining it's normal immune function, starts to OVER react, thinking it's own thyroxine or thyroxine-detecting cells are alien. So although it came on after your traumatic birth, it wasn't caused by it. It is however entirely possible that your immune system would have been even more strained than usual following the surgery and all, which may have had an effect, so who knows! My pregnancy and birth were pretty text book, apart from some BP issues, and i was very ill with Hashi's afterwards, WAY iller than i had been before.
I think the diagnosis test depends on your symptoms. If you have a sore throat (i had a painless goitre) or a large hard or lumpy swelling they tend to give you a radioactive uptake scan to check you don't have cancer. If you don't have a goitre or it is smooth and painless they will usually wait. Because mine was smooth they didn't force me to wean to have the test, but then i lost my milk, and once i DID wean, my goitre went down again, so by the time i could have theoretically had the RAU test i didn't need it. Also by then my bloods with antibody counts (took 5 weeks!) were back showing i had Hashi's.
I know what you mean about the BFing. I have had many many friends look down on me before they knew the full story. Sadly because SO many women stop BFing due to poor info and pressure from families etc., when i say to people "i lost my milk" i can see on their faces (and some have even said to me) they think i just "did it wrong" or "gave up to easily". I'll tell you what though, it's made me ALOT more compassionate than i used to be for others who wanted to BF but couldn't. SIlver lining i guess.
I 2nd Charli'smumma on the drugs, go see what else they can do for you - it's not good enough for you to have to be in pain all the time because of the treatment, they MUST have other options.
Big hugs to you hun
Bx
Hey Hoobley & Jas. I have a book about Hypo and Hyper-thyroid disorders called Fatigued, Fat and Forgetful. It's by Elizabeth Wetherell and it is quite a good read. It explains a fair bit about post partum thyroid malfunction also.
I was surprised to read that it says sometimes toxaemia can be associated with hyperthyroidism. Is toxaemia another name for pre-eclampsia? Because I got PE in the latter stages of my pg.
The book also says that a problem with sufficient milk production can be a symptom of thyroid malfunction. Either Hypo or Hyper. I did not know this and I really struggled to get enough milk with Charli. The midwives were telling me I had the attachment wrong but I was certain she was attaching fine. When I got home from hospital I expressed with a hospital grade breast pump to try and increase my supply. but after 2 weeks I could still only get 20 ml's (if I was lucky) from each breast. I could no longer handle expressing and topping up with formula for each feed and with much sadness I gave up and just put Charli on formula.
Hoobley, how long did you breastfeed for? One of my friends had supply probs and she was prescribed an anti nausea drug which has a side effect of increasing pro-lactin. THis fixed her supply probs but this option was not even mentioned to me and it was too late by the time I found out about it.
But then there is the whole, should I b/feed when I am taking meds debate. My endo does say it is okay to b/feed while taking Propylthiouracil but you do kind of wonder don't you. . .
Hi Guys, I sooo would love to start trying for another baby come August. My T3 & T4 are in the normal ranges atm but my TSH is still repressed so the endo still has me on 5 PTU tabs per day :( Ever since they upped my dose I've wacked on the kilo's :( I am now on a mission to eat healthy and exercise 5 times per week so I can get healthier for bub #2.
I'm not sure when my op would be. If I go through the public system it could take up to 12 months or so. Seeing as the Graves is starting to settle down a bit again I am very tempted to just start TTCing #2 in August. What do you think?
I am also seriously considering going back to see my old endo as I just have a feeling I really do not need to be on this many tabs atm.
Hey,
I BF fine for 4months, then my thyroid really came under attack, which coincided with me moving out of my XP's place and going on the minipill. The combination caused a sudden drop in supply. I cut out the pill but my let-down never came back and DD was impatient and began refusing the breast. By 5 months she was on 1 or 2 formula feeds a day, by 6 months she was on 1 or 2 BFs a day and i gave her her last breastfeed on October 31st, the day before she was 7months. At the time it was the only feed i still had, at 5am. I think it's something i COULD have gotten through, without all the other crap going on, and with better/any support. Unfortunately XP kept "forgetting" to refrigerate/use my own EBM because he found the formula easier to deal with, so that made a big difference too. WHen i left he had 10 DAYS worth of EBM in his freezer. He had to give her 7 feeds a week (one whole day's worth) but because of my supply dropping i could only pump and replace 3-5 a week, and most of that he forgot about and put down the sink. He would slo stand EBM out to defrost and then leave it out, standing warming in the sun for 6 hours before he remembered it. Or put it in his fridge and then leave it there. He still has frozen EBM in his freezer now, which he couldn't be bothered defrosting to give her when formula was quicker. He was supportive of me BFing because it meant he didn't have to do night feeds or help out with washing bottles (there's a reason i left him!) but as soon as he had to do work he couldn't be bothered anymore.
Next time will be different i hope. I won't be leaving DP as he is wonderful and selfless and already a great step-daddy, so will probably be a fabulously involved daddy. I won't be using the minipill. I will be monitored and medicated throughout pregnancy and every month afterwards so problems will be caught earlier.
I have heard of the anti nausea drug that can increase supply. What puts me off...do you remember the forum user Caro? SHe left a while ago, but she was on maxalon for many months for supply issues. SHe got quite ill at one point, with muscle weakness, nerve problems, dizzyness - really scary stuff which she had to have brain scans and tissue biopsies for. They thought she had lupus. Turns out it was side-effects of long-term maxalon use. They are all known side-effects but she was taking it months before they came on and they got REALLY serious for her. So i don't know if i could get it in the UK, and if i could i think i'd be reluctant to use it. At the end of the day, if i get ill again i'll wean again. I HATED that i couldn't BF anymore, but if i'm totally honest i was beginning to feel better within DAYS of that last feed, and i was only feeding once a day. My body NEEDED me to wean. It turned out i never recovered enough not to need meds, but my TSH level went from 16 to 6.3 within 3 weeks of weaning and my goitre went from grapefruit sized to barely there in that time too. I will do everything i can to avoid it next time, but if it happens i will accept it. I at least know i can get to 4 months without issue and i reckon i'd have actually been able to go on BFing either wholly or to some extent even WITH the thyroid if it weren't for the break-up, stress, wasted EBM and minipill as well.
Over to your stuff...DEFINITELY see your old endo. If you have a gut feeling about health it's better to be SURE you're wrong than too scared to find out if you're right. And you should talk to him about ttc. I know how loud the clock can tick. DD is 26 months now, and ideally i'd be about to have #2 but DP and i just aren't ready to start our family yet and it's likely to be at least another year before we even ttc. I WANT to ttc now, but i NEED to wait until our time comes. I know it's for the best. I think you should talk to your endo, talk to DH and have a big think about it all, and i bet you'll find you already know the right thing to do.
:hug:
Bx
Hey Hoobley,
Yes I am hoping to B/feed for much longer next time too. My friend did take maxalon for about a week but then her Dr switched her over to motillium and she has had no side effects. Apparently it's not an anti-nausea drug but some kind of digestive drug. She has been on it now for about 6 months and it has been great for her so far.
I have made an appointment to see my old Endo early July. Will keep you posted.
Well, its interesting to see what people have experienced after birth with Graves. I was diagnosed with extreme thyrotoxicity 4 days before I found out I was pregnant. My specialist immediately sent me for an antibody screen, and at 8 weeks pg, was diagnosed with Graves disease. I am also a diabetic, with IBS and Reflux, and I have been dealing with Hyperemesis Gravidarum. This pregnancy is, according to my endo, downright dangerous. I am scared. I started off with the usual symptoms... meripheral muscular weakness (which had progressed all the way to my neck), tachycardia, rapid weight loss, hypertension, diarrhoea (even more than normal :doh:), vomiting... you know, all the fun stuff. I spend new years and a week in hospital, almost too week to feed myself, and not keeping it down anyway. In late January, I rang the hospital, and told them they problems were not going away. In mid-Feb, they cleared me for work (I am a nurse). I went back to work feb 22, and promptly collapsed. In March, I got in to see the Head of Endocrinology at the John Hunter Hospital, as my GP was concerned about the lack of treatment, and that it was affecting my Diabetes (My BSL's were through the roof). Well, my first t3, t4 and thyroid function tests came back as immeasurably high. On top of all my other regular meds for the above-mentioned conditions, I was immediately placed on Beta-Blockers for the heart rate and BP, my antidepressant was increased because of the alarming frequency of panic attacks, I was given Bricanyl for the same, I was put on Ondansetron 4mg, 4 per day for the nausea and vomiting, and prescribed a whopping 16 tablets per day of Carbimazole (80mg, 4 times standard dose), and I have only just been dropped down to 8 tabs. I have only had the dose decreased because on June 16, I was put in hospital for a week due to excessive Nausea and Vomiting, and a resp infection. There, I was given 50mg prednisone per day in an effort to suppress my immune system enough for me to not need to hold down so many tablets. It has the added bonus of potentiating the ondansetron, so now I am only on 1 of those per day :pray:. so far, these changes have worked... and I have finally stopped losing weight (about time). What scares me, is the knowledge that with these tablets, I may be destroying my baby's thyroid before she is even born, giving her a cleft palate, giving her brittle, underdeveloped bones, and risking all sorts of serious complications from me taking "unproven" drugs. But if I DON'T take them, I risk the antibodies from my thyroid attacking hers, making her underweight, and I risk her death, and mine. My Dr keeps telling me "you are very, very sick. You need to relax", but I can't. My husband does not seem to understand what I am going through. I cannot get past the fact that I am poisoning my baby to keep me well. I may not be able to breastfeed, which will be a HUGE issue, mainly because of the antidepressant. The baby is going to need to be weaned off it very slowly, and the best way to do that is by breastfeeding. I just don't know what to do now. I feel so helpless. My dr's are great (I have my own midwife, Endo, Obst, dietitian, diabetes educ and psych at the moment that I see every week), but I still feel like there is nothing I can do, and it is just so hard to relinquish control and give it all to them. :(
Oh HellRazeD, big :hug: to you.
It sounds like you've had a pretty rough time. Just remember that your bub must be a strong little girl. She survived those first 3 months of pregnancy when your graves was really playing up so she will get though it, you'll see.
Hopefully as your pregnancy continues it will suppress the Graves more and more and your dose of meds can be lowered.
And perhaps een if you cant fully breastfeed, perhaps she could have a couple of feeds of breastmilk per day (even if you have to express it) and that was she will still be getting a small amount of your anti-depressant to be weaned but wont be getting all of your thyroid meds.
Might we worth mentioning this to your Endo, but my endo (professor Robin Mortimer who is the director of Endochrinology at the Royal Brisbane Hospital and professor of obstetrics and gynaecology at the University of Queensland who's clinical areas of interest are endochrine disorders of pregnancy and thyroid deasease generally. His research interests are in placental transport mechanisms especially the role the placenta plays in regulating transfer of thyroid hormones
Oh HellRazeD, big :hug: to you.
It sounds like you've had a pretty rough time. Just remember that your bub must be a strong little girl. She survived those first 3 months of pregnancy when your graves was really playing up so she will get though it, you'll see.
Hopefully as your pregnancy continues it will suppress the Graves more and more and your dose of meds can be lowered.
And perhaps even if you cant fully breastfeed, perhaps she could have a couple of feeds of breastmilk per day (even if you have to express it) and that way she will still be getting a small amount of your anti-depressant to be weaned but wont be getting all of your thyroid meds.
Might we worth mentioning this to your Endo, but my endo (professor Robin Mortimer who is the director of Endochrinology at the Royal Brisbane Hospital and professor of obstetrics and gynaecology at the University of Queensland who's clinical areas of interest are endochrine disorders of pregnancy and thyroid disease generally. His research interests are in placental transport mechanisms especially the role the placenta plays in regulating transfer of thyroid hormones between mother and fetus.
Anyway, after all that raving on I do remember him saying that propylthiouracil (PTU) was the best anti-thyroid drug to be on during pregnancy and breastfeeding, so perhaps that might be worth speaking to your endo about?
Anyway. Hope this helps, and hope you are feleing better soon.
take care
Tamara
PS: when Hoobley comes on line later on (She is in Scotland) I'm sure she'll have some things to say to you - she is a wealth of knoweledge!
OMG HellRazeD! :hug: :hug: :hug:
I'm so sorry you're so sick right now. :(
Yours is the most extreme Graves i've heard of, and i'm so sorry you're so ill during pregnancy when the options to treat are so limited.
It must be very frightening to have to deal with what you are, especially as a medical professional yourself.
Reading your post, from all the options you have, you're taking the ONLY ones which offer your baby a fair chance. No drugs and the baby will probably be born very underweight, and might be born into a motherless family, or even not get to be born alive at all. My mum died when i was 24, and i have a poorly-functioning thyroid. If she had destroyed my thyroid before my birth in order that we could have those 24 years together i'd have felt NOTHING but gratitude. Underactivity is MUCH easier to treat, even in kids, and because she'll be tested when she's tiny there won't be chance for her to fall behind in development as untreated kids do. I know you feel this is poisoning her, but it is NOT you, it's an impossible situation and you're dealing with it the only way you can. Be proud mumma, the hardest decisions to make are the ones between options where there are NO easy answers or purely positive outcomes.
Is the breastfeeding issue due to the possibility of no milk because of Graves, or because of the drugs you'll be on once babe is born? Because of the people i know who struggled ALL of those who knew BEFORE the birth that they would likely have issues managed to feed. It was only the unlucky among us (like Spice and myself) who were never told, and never knew until our milk was already gone, that lost out. I will do SO many things differently next time and i know because i've experienced it that even ONE Breast feed in every 24 hours is worth it to my baby and very much so for me, thus i will be less inclined to chuck the towel in when i only have that one feed left.
If it's because of the drugs, you might ask the doctors if there's any possibility of staying on drugs that are safe to BF with (there ARE some for hyperthyroidism) if you agree to weekly testing and monitoring? It will be a massive hassle but even a few weeks of some milk from you will make all the difference to the AD withdrawal and will give you both a chance to bond and get tight after such a stressful pregnancy.
And you are NOT doing nothing. With every passing day, every pill you take, you are safeguarding your baby and letting her stay in there and grow. Considering the fact that you could have had different drugs and been well again by now if you WEREN'T pregnant, that is pretty huge. Many people would terminate rather than going through what you have and are for your baby. Feel PROUD, not impotent. Every day you battle this illness you are fighting for your baby's chance at life. That's immense!
Bx
Thank you guys so much. It has brought tears to my eyes to read this. As it stands now, I am unable to tolerate PTU due to the reflux disease. I take medication for this that controls this, but I am on half my normal dose because it inhibits bone growth. I am on Prednisone, but it dramatically increases the risk of cleft palate to almost 35%, which will make it near impossible to BF, and (this will sound strange) but my nipples are too large to express properly, I even spent $200 on an electric pump, only to make a helluva lot of pain.
I am on weekly testing atm anyway, I am content with that. The whole works. FBC, UEC, LFT, TFT, T3, T4, HbA1c, Ca2Co3, potassium... the works. I am going to have no blood left by the end of this... LOL. I just feel so guilty. But, I know I have a whole team booked for my induction, the head of Paediatrics is booked! At least I can take some comfort in knowing that I am being looked after. And onthe plus side, I have stopped losing weight. Finally! I lost the equivalent to 32kg (when you factor in expected preg weight gain in obese diabetic pts of 0.6kg per week). According to my husband I look great, but it is still terrifying.
It is really good to know someone else has been there, and knows what it is like. I spent the first few months blaming myself, Like when I was diagnosed with Diabetes. Well, now I have 2 autoimmune disorders, and I know why I went from being dangerously underweight to obese in only a few weeks right after my daughter was born. Now I know, there is nothing I could have done about it. Just like there is nothing I could have done about this.
But see, I never knew until this last few months that this runs in my family. Runs deep. Both Diab and Graves. My mother was adopted, and we only just found her family. Bugger, ey.
Its just..... Do you guys still feel like you are banging your head against a wall with it all? Wishing you could just go to sleep and wake up with it all gone? All over? The funniest part about it all is, when the first specialist suspected it (late Feb), he said that while I was hyper, my OCP was likely not being absorbed (therefore ineffective) because of the gastric upset it brings. He added that I should not worry, because I was probably also temporarily infertile. Well, I guess not! Ooooh, hubby was NOT impressed! We just got both the other 2 in school!
ANyway. Enough rambling. Thankyou for replying. Your kind workd from you both broguht me tears of relief. I am so grateful.
<3 Serene
On the being better by now if I wasnt pregnant, The health care in my area (newcastle, NSW) is so stretched, I would probably still be waiting to see a specialist!
Okay, no matter HOW big/small/flat/inverted your nipples are you can ABSOLUTELY learn to express by hand if you need to. Here's a link to a site with great instructions plus pictures. It's all down to technique - i would easily get 40-60ml MORE if i went by hand instead of using the dumb pump (i had 36J boobs and large flat nipples) - without putting too fine a point on it, there aren't cows you CAN'T milk - every lactating woman can express, it's just about mastering the technique that works for your anatomy. Purplemama, one of BB's much-loved users, expressed for her cleft baby for many months, she might still be in fact. Maybe if you go to the "children's medical conditions" bit and search for threads on cleft babies you'll find her. I'm sure she'll have great info for you, she's an inspiring woman :)
There's a 65%+ chance your bubs won't have a cleft palate - are they going to scan you for that or do you have to wait and see? Either way you can start to collect all the info and get the support you'll need into place NOW, so that when she comes you are ready for the next steps.
I never had Graves, i've got Hashi's, the opposite, but yes, i hate that it's autoimmune. Diabetes type 1 and hashi's run in my family too, and i HATE that it's my own body that's doing this to itself. When i was first diagnosed the idea of taking meds for the rest of my life terrified me. I hate the idea that now i am NOT ok. If i can't get my medication i will NOT be fine. That bugs me. I pictured the mounds and mounds of medication i had to take over the next 60 years, but i realised that now, today, i only have to take 1 pill. And that's how i think of it. 1 pill. I was a homebirther with DD and i don't relish the idea of having complications with #2 that mean i have to go into hossie. I've never even had a drip in, let alone stayed in a hospital! I guess i'll just have to jump in and see what happens, but i won't be doing so this year!
Bx
Thanks Hoobley. You really should be a middy. You do so much better at calming people than they do, because you know what its like. I guess I am just really scared about how much harder this pregnancy is compared to my other 2. Thanks.
Hi guys,
I have been told that my medications are not working as well and that i have to undergo some radiation thing to kill the thyroid. I am hoping i can talk the royal brisbane out of it i dont want to have to take hormone therpy for the rest of my life.
My medication is neomercial and inderal for my hear.
HellRazeD - congradulations on your pregnancy. Hugs that it couldnt of been smoother. Bubs are resilent things.
Jas, Who do you see at the Royal?
Thankyou for the Hugs. My mumma came round today, and I had a big cry and prayer session about it. I feel OK now. I have to believe that (ok getting religious for a second) that God made Doctors for a reason, and at this point, He wants me to utilize His gift of medicine to heal both me and the baby. So far, she is very strong. I just have to keep praying she stays that way.
As for the Inderal, the need for that will go once the thyroid settles a bit (or the symptoms do anyway), so focus on that more than the fact that you are on a heart med. The inderal is to control SYMPTOMS, not DISEASE. Like taking Maxalon, it is to control the symptoms only. You still need it, but some other people do not.
The neomercazole, however, is to combat the DISEASE. Like when they give you antibiotics to get rid of an infection. It is the one you need to have until the thyroid is healed. Npt just until the symptoms go, but until Dr is satisfied that the thyroid has settled. Neomercazole is what I am on. Same thing, little pinkish pills? They are effective, but often need massive jumps in dosages to do so. Like I said, sixteen of the blasted things. My endo has teamed it with Prednisolone to potentiate it. Try asking about that, it has halved my need for the neo so far. PTU is the other big one, it is generally preferable, especially in pregnancy, but there are debated as to whether it is as effective as Neo. Generally, it is faster-acting on SERUM levels of T3 and T4, but not as completely effective (i.e, less people have their bloods return to normal within 6 months while on it) as Neo. Neo can take 3-4 months to convert serum levels to normal, but there is a more dramatic drop when it begins to do so, and the symptoms often disappear faster. Both medications put you at risk of neutropaenia, over-suppression of the thyroid, and a host of other complications. There is a greater risk of these the longer you are on them.
As for the RAI, I am not sure how I would feel about being unable to touch another human for 14 days, especially my kids, and I would most certainly not want to go home like that. As a nurse, I feel if that is the case, then they can keep me there in a single room thank you very much. Less chance I would forget and hug someone. The final option is a thyroidectomy, which essentially "cures" the disease, and will place you on Thyroxine every day for the rest of your life. This is actually a fairly good option, but is not without risks either. There is the risk of infection, damage to the larynx and trachaea, and of course, carrying a scar around forever. Both the surgery and RAI require thyroxine after. Forever.
No matter what, ask your dr for ALL the information, and settle for nothing less. I see patients who are underinformed, and even misinformed, so often, and it makes my blood boil. But, ultimately the decision rests with you. Not them, YOU. Do NOT let them pressure you into something you are not comfortable with, if there is another suitable option, no matter how temporary they believe the solution to be. It is YOUR body!
Serene
well my levels seem to have nearly come back to normal - cross fingers because the main one is still high which can make the rest go back up to match it. Hope not because i really dont want radiation. Havent had my appointment at the royal yet. Still waiting for my appointment slip.