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Hello, my name is Daniela, I live in the UK, I had my second baby in October 2014 and I've just been diagnosed with Graves disease. I've started Carbimazole 15mg on 22/03/2015 while I am still breastfeeding, and the new Endo I've been to today wants to switch me to PTU 200mg. I am so tired and scared about all this, I do not know where to look anymore to find out about treatment for Graves' Disease.

Please can anyone explain to me at all why the doctor would want to switch medication? From what I have learned until now it looks like PTU has a lot more side-effects! Or are the side-effects dependent on dose?

Thank you, I shall try to post more details tomorrow, I am absolutely exhausted between lack of sleep at night as I'm breastfeeding a 5 and 1/2 months old, taking care of him and his 4 year old sister during day time, and trying to find out how not to do something terrible and make this condition worse!

Thank you,

Daniela

41 Replies

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  • As you have Graves i do not think its in anyway good to be breastfeeding since the carbimazole or PTU will also be absorbed by your baby

    As it is they will genetically liable to thyroid disease and this will make it worse

  • RFU, PTU doesn't cross the placenta and milk barriers as easily as Carbimazole and this is why it is recommended for pregnant and nursing mothers. Carbimazole leaking into the milk may 'overmedicate' the baby and make him slightly hypothyroid but it won't make a genetic predisposition to Graves worse.

  • Danutza, PTU is less likely to cross the milk barrier than Carbimazole and this will be why your endo wants you to switch to PTU while you are breastfeeding. PTU isn't recommended for long term use so when you finish breastfeeding you will be switched back to Carbimazole.

    As you are taking anti-thyroid meds there's nothing you will do to make your Graves disease worse. Just rest as much as you can with two young children dependent on you.

  • Clutter ...time will come when i am proved right

    all meds cross into the baby via breast milk and eventually do their damage

    theres far too much complacency about even minute traces of powerful meds and chemicals

  • RFU, Neither Carbimazole nor PTU cause Graves disease. They block the hyperthyroidism Graves induces.

    It's not complacency to switch anti-thyroid drugs to the one known to be less likely to cross the placenta/milk barrier to avoid causing temporary mild hypothyroidism in the baby.

  • I have not said Carbimazole or PTU causes Graves Disease

    But I have very good reason to believe the end result of a Graves Mother breastfeeding a baby will eventually create health problems in the baby .

    The entire medical world is far too complacent about both the effect of drugs and the genetic path of thyroid disease

  • RFU, genetic predisposition isn't transmitted via breast milk. My Graves mother (undiagnosed at the time) breastfed my sister and I. Sister developed Graves and I developed Hashimotos and thyCa.

  • Clutter

    You are missing the point

    The baby already has the genetic predisposition to thyroid disease and or any of its associated diseases

    The last thing any baby needs is pharmecutical drugs in their system via breast milk

    My husband had both Graves and Hashimotos and spondylolythesis and Dyslexia

    His Mother had Endometriosis and Spondylolythesis

    Her Father was Dyslexic

    Our younger daughter has Endometriosis, Spondylolythesis,Dyslexia, Hashimotos, Fibromyalgia

    3 of her daughters all have Endometriosis , Hashimotos

    2 of them are Dyslexic

    Her son has Aspergers

    Our other daughters little girl has Coeliac and Hashimotos

    Neither I or any of my family has any of the above or indeed any Autoimmune condition

    The genetic predisposition is so strong it is not diluted by my good genes .

    That is what the scientists should be investigating

  • I think you need to be really, really careful about advising a mother to stop breastfeeding her baby. There is lots of evidence that breastfeeding helps to prevent autoimmune problems, and has numerous other health benefits too.

  • I am only too well aware of benefits of breastfeeding however

    my husband was breastfed for a year

    i breast fed both of my daughters for nearly a year

    my daughters breastfed their children for nearly a year

    how come my husband

    our daughter

    4 of 6 grandkids all have several autoimmune diseases

    none of which have been diluted by my good genes

  • RFU, I'm not disputing the strength of gene predisposition but the genes aren't passed via breast milk. The benefits of breast feeding outweigh the risks of PTU crossing the milk barrier athough it isn't true of every drug which is why Danutzia has been switched from Carbimazole to PTU.

  • Thank you for all the information. I am not even sure I have a genetic predisposition - a few years ago my husband and I used a promotion from a DNA analysing company in the US (23andme) and they never marked me as a risk for Graves! But I was under extreme stress with this pregnancy (I had chickenpox at 18 weeks) and with the birth (emergency C-section due to oblique presentation) so maybe that is what happened? The doctor says it was the pregnancy...

  • Danutza, Have you been tested for Graves antibodies? If you haven't been tested it is likely you have transient hyperthyroidism triggered by pregnancy rather than autoimmune hyperthyroidism.

  • Yes I have been, and it is positive. Actually they did two tests:

    TSH Receptor AB 2.8 (0 - 0.5)

    ANTI THYROID Microsomal Ab 306.6

  • Danutza, yup, confirms Graves. So not transient hyperthyroidism although you may still have a period of remission after you've been on PTU/Carbimazole for 9-18 months. Unfortunately, having Graves tends to make permanent remission unlikely.

  • Hi Danutza

    I am sorry you have developed Graves and at the same time caring for a new baby and a toddler. You must really be exhausted. Hopefully, your medication will calm everything down shortly and you will feel much better. Clutter has had Graves too, so knows all the ups/downs and is knowledgeable.

  • Hello Daniela and welcome to the forum but sorry too you have had to find us! I like you have Graves Disease and live in the UK.Yes as Clutter has said it is believed that PTU is a safer option whilst breastfeeding.It is difficult for you with 2 tiny children trying to come to terms with your diagnosis alongside all the work of caring for little ones,I am no expert on Graves but since my diagnosis a couple of years ago I have gain some knowledge along the way! If you put Graves Disease into the search box lots of posts will come up and there will be lots of info,Rest when and wherever you can ,take any help that is offered and come on here for support and info.Last but not least congratulations on your new baby,good luck ..Pipps x

  • I just wanted to congratulate you on continuing to breast feed even though you must be tired, being so unwell. I know how tiring those late night feeds are!

  • Also, I just had a quick look on the web, and found lots of links showing breastfeeding helps to protect babies from developing autoimmune problems in the future. 😊

  • Daunts a, ive got Graves too. My heart goes out to you having it with a baby and little girl to cope with too.

  • Hi Daniela, I've got Graves too. I can't even begin to imagine how you are managing to keep going with a baby and young child. I was 66 and my kids long gone. I started on Carbimazole then had Levothyroxine added in because my hospital treats with what is called block and replace - the Carbimazole blocks and the levo replaces.

    PTU is what is recommended for nursing mothers. I can see why you want to keep breast feeding, it gives such a good start and I liked the convenience of it and that I didn't have to bother with bottles.

    Even if you find you have to stop breast feeding - breastfeeding was an enormous thing for me, my first born breast fed for a long time, the other decided he didn't want the breast - it seemed very early on but it was probably about the time he was introduced to solid food and eventually I had to give in and stop. It was me who was upset about it though. I can imagine for you hanging in and keeping breastfeeding is something that keeps you going through all this.

    All I can say from my own experience of Graves is to try to get as much rest as you possibly can, do as little as you can get away with round the house - although don't ignore it if it upsets you - that would be worse.

    Take as much help as you can and try to rest as much as you can - when the baby snoozes you can either rest too or just do something nice that you want to do - not something you feel you 'have' to do. Be kind to yourself, you are really quite ill with Graves even if you look ok. Is there a 'Home Start' in the area where you live?

    They provide trained volunteers to support people who need help, your volunteer would come in for a couple of hours every week ,I don't know a huge amount about it but it could be for something like entertaining the baby while you rest, don't know if they do housework / shopping too but that might be a way for you to get some extra rest time.

    You've found a good place to come for support, try to stay as relaxed as you can and not get stressed - I know, new baby, five year old and someone says relax and try not to get stressed but you know what I mean - that helps with Graves, also when I started on Carbimazole my pharmacist came out to tell me to be sure to take vitamin C while I was taking it so I took 1000mcg slow release Vit C every day, I know you're on PTU now but it would probably be worth giving it a try. I'm still taking it even though I've been in remission for while.

    Just make sure to have regular blood tests so that you don't end up going from hyper to hypo that can happen when you are on a high dose and aren't checked frequently enough, so make sure your blood is tested regularly. I was started in 20mcg carb a day tested after a month one rab, nothing much had happened so I got a letter from my endo ( hadn't seen him at that point) telling me to increase my dose to 40mcg a day and by the time I saw my endo two months later I was under active, I think I'd have been caught if I'd been tested earlier.

    Sorry to ramble on - hopefully you will feel better soon, it's a horrible disease Graves.

  • I developed graves after my second baby. I was prescribed ptu which I took for 3 years and i breastfed for 1 year. My daughter is now a healthy 22 year old and hasn't had any thyroid problems. I just wanted to reassure you. I hope you feel better soon.

  • Hi there

    I also had Graves and Hashis and ThyCa. The good thing about anti thyroid drugs like CBZ or PTU is they also lower the antibodies. The thing to remember is the culprit is your over active immune system and the victim is your thyroid. I would hope as you re breastfeeding and have little children that they will monitor you closely to ensure they do not overshoot with the anti-thyroid drugs (ATDs) as being hypO is no fun either, and the fatigue etc can get worse.

    Elaine Moore is a good resource for Graves patients, she has a website and a book, and I learned a lot from her. In your shoes I would not want an endo to rush me into any irreversible treatmets like RAI or Thyroidectomy and I would want to stick it out as long as possible on ATDs and as someone else said Block and Replace. Elaine Moore explains all of this.

    I appreciate you have your hands full but anything you can do to calm your system down would be good including eating really 'clean' - no gluten or wheat, organic if you can afford it, good fats, good protein, no processed food. If there's any chance of getting out of the house to yoga, accupuncture, a nice walk, massage etc then it will all help. Also get your doctor to check your vitamins, minerals and iron ... inc B12, Folate, Vit D, ferritin, serum iron, transferrin, and your saturation %. These can all go haywire when you are hyper or have been.

    Also it is important they test your antibodies (they may well have done already) as some hyperthyroidism around pregnancy and birth can be transient and not permanent, again Elaine Moore will cover this, and it might be it all settles down. She also recommends some natural supplements that can help and will note which are OK if you are breastfeeding or not. For e.g. L Carnitine slows down T4 to T3 conversion. Lemonbalm tea can be helpful etc.

    Many Graves patients can go for many years on very very low dose ATDs for years, and provided your liver enzymes are OK then there is no reason to keep shooting for 'remission' - some take 1mg once a week and that keeps it under control.

    It is a bit of a brain freeze when you first get hit with all this information but one good habit to get into now is get and keep all copies of your blood results and keep track of how you are doing yourself - care for Graves can be a bit hit and miss, so it is really helpful to be clear in your own mind how you are doing. I also have a big A4 page a day diary (currently selling cheap in WH Smith!) and I write down all my symptoms, pulse, BP, temps, what I ate, what supplements I took, any dose changes, so I can backtrack if I start feeling worse or better.

    Good luck

    Rebecca

    x

  • Thank you everyone for answering my plea for help! Thank you for sharing your personal experiences, they are very helpful, I shall start a diary indeed with everything that is happening. I'll keep in mind to make sure I don't let the endo make me do something I do not want to do. I'll be mindful about dosage and going hypo. I shall check the Elaine Moore website and buy Dr Barry Peatfield's book, I understand it is a very good one.

    It all still feels so unreal, as if it is happening to someone else. I've always been very careful with food and cleaning products - we buy most vegetables, some fruit and meat from a local organic farm, food gets cooked from scratch for years now, we rarely eat any take away or pre-prepared food, I use soapnuts to do laundry, and bicarbonate of soda and vinegar for cleaning... though recently we started using a dishwasher and we are using detergent there, I'll look into that. Also I only buy toothpaste without fluoride and only try to use natural remedies for most ailments, and I cook with ghee and coconut oil... I am also looking into yoga and meditation.

    I have been and still am indeed agonising about taking the drugs and breastfeeding the little one. On the Carbimazole - I take the 15mg after the last feed in the evening at 7pm, and then the next feed is around 2am, so that is the longest the baby can go for now. He will be monitored with blood tests every 2 weeks (I'm very sad he has to suffer because of me). I worry about both drugs - the PTU because of its high liver toxicity...

    Here are my first results:

    TSH<0.01 (0.35 - 4.94)

    Free T4 40.60 (9.01-19.05)

    Free T3 34.80 (2.63 - 5.7)

    I aso suffer from solar urticaria, which started about a year after the birth of my first child, so since 2012.

    I shall take vitamin C, and I've also seen different suggestions for Selenium, B-complex vitamins, acetyl-l-carnitine to help with the rebuilding of muscles, also Omega 3 as anti-inflammatory...

    Thank you again,

    Daniela

  • Daniela, your FT4 and FT3 are very high. The PTU will bring them down into range ie FT4 <19 and FT3 <5.7. Anti-thyroid drugs can work very quickly which is why regular blood monitoring is needed but symptoms can lag behind good biochemistry for a few weeks. I'm sorry your baby will have to have blood tests too but it is to protect him from becoming temporarily hypothyroid which will slow his development.

    Selenium is recommended to improve thyroid function so I'm not sure you need that while you are on PTU and Carbimazole.

    Ask for ferritin, vitamin D, B12 and folate to be tested as your hyperthyroidism may mean you are using up the vitamins faster than you can replace them. Low vitD can make skin very sun sensitive.

  • Thank you Clutter, I've managed to get the endo to ask for a Vit D test. I suggested that to him because I annoy able to be in the sunlight too long due to my sunlight allergy. Both him and the GP declined other vitamin deficiency tests. Does anyone here know how to get blood tests done without going through the GP?

  • I am not able not I annoy...

  • Danutza, Blue Horizon and Genova do private tests and City Assays do vitamin D.

    ncbi.nlm.nih.gov/pubmed/252...

    A couple of links on hyperthyroidism and Graves:

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

  • Selenium does also lower antibodies though so is helpful in this scenario....

  • Girlscout, yes I know, it's 200mcg I was cavilling at.

  • Ah missed that bit ...

  • Girlscout, you missed it because it wasn't there. :o 'Twas another member taking 200mcg. Danutza didn't say how much she was taking. Thanks for letting me know it can help reduce antibodies anyway.

    Nice to see you again :)

  • Ah I see! Thanks, yes I took it when I was on carbimazole, and take it now I'm thyroidless too. It does improve T4 to T3 conversion so I guess it's a balance in all things. x

  • Very interesting - I was hoping to lower antibody levels, but I don't want to improve the T3 number, as it sky high right now :-0.

  • What a shame, I really feel for you and can imagine it does feel totally unreal, there you are doing all the right things and then you go and get Graves.

    Have a look at The Autoimmune Solution by Amy Myers M.D. - I bought it first on Kindle but it's hard to flick back and forward on Kindle so I ended up buying the book.

    She's an American doctor who developed Graves as a medical student, had RAI during her training then went on to develop her own system for supporting the autoimmune system, she claims to help you heal your gut in 30 days. I haven't started that part yet, at the moment I'm reading through the book it with a view to starting her 30 day plan once I'm completely finished the book - it's very much about cutting out gluten and things that upset the immune system it might be worth you looking into it. 😊

  • Thank you, I shall check it out. I've seen this mentioned before, but I kind of hoped it would not be true. I do like my biscuits as they are helping me through how I feel now... hmmm, I need to learn how to make gluten free cookies.

  • Sadly I think it is probably true. right now I'm making my oat bran breakfast muffins - supposed to help lower cholesterol but I love them. I bet most of your home cooking is GF, just be careful what you use to thicken gravies/sauces with.

    Think there are some GF recipes in this site somewhere under gluten free chat. I think I sent in a nice chocolate brownie recipe sadly I don't have a cookie recipe - I'm more of a 'traybake get it all done at once kind of a cook'

    It's not too difficult once you get into the swing of it though, I tend to keep it simple and look for recipes that substitute GF flour for regular flour rather than ingredients with fancy names.

  • Elana's pantry online is an excellent resource for GF, grain free, autoimmune paleo recipes, as is Deliciously Ella x

  • Thank you Girlsvit, I must look them up. im always on the lookout for recipes. I had this the other day, someone else made it but it was lovely, I'll definitely make it again myself

    a-littlebird.com/2014/05/07...

  • Ooh that looks nice!

  • It was and it travelled well, the person who made it, made it while she was visiting her mother at the other end of the country and brought it home with her, she lined her tin with one if those cake shaped cake tin liners you can buy in lakeland, ive never used them but will now. Not sure it was worth putting the rose in the cream, ordinary cream would be ok too.

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