after all the radioactive treatment was over, and after the 4-6 months safety period to wait to try conceive, me and my partner were going to start trying!
I found out after my first blood test after the treatment that my thyroid has gone a little over active, its really knocked me - nurse says its nothing to worry about as obviously it takes months to make a difference and so on..
but I have had it in my head for months i'm going to be 'normal' after all this was over, and get on doing normal things!
im not too sure whether we should carry on with our plans to try for a baby, or wait?
does anybody have any pregnancy stories with over active thyroids/graves disease? ive googled it but theres so many different things been said all over the internet its confused me!
any advice would be really appreciated!
thanks guys xxxxxxxxxx
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jrosebud
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That is unusual - after RAI the Thyroid usually goes the other way, underactive. But I suppose autoimmune stuff can go either way - I'm guessing you had the RAI because of being overactive anyway? (just a guess).
Have you got your blood tests to hand? (with ranges) so that others can chip in to help. Maybe waiting a while to let things settle is wise and have another test in a few months - but depends how you are feeling 'tho.
(My raised antibodies were blamed on my Partial thyroid op, although they indicate an autoimmune response).
Things you can do in the meantime are get your irons, ferritin, folate, B12 and Vitamin D checked and sorted if low (these tend to be low with Thyroid disease anyway and are important too). Best wishes, Jane
I was reading on the Elaine Moore website about the reasons for your thyroid being overactive after RAI.
I know when I was told RAI was my next option at the same time I was also told that if it didn't work first time then they would give you a second dose.
Yesterday's links explain why. Look up the question I asked 'anyone on long term use of antithyroid drugs' then click the links and read what is said.
Thank you Liz- I don't pretend to know much about graves & treatment and just wanted to respond to a new member's post (actually crossed my mind to mention they estimate the RAI dose & it may not be correct, but given time who knows?)
We do tend to see folks go Hypo after RAI and/or a TT . (I had hyper symptoms but my partial op was because of a 'dodgy' nodule, no other treatment offered). I looked at your post and will investigate Elaine Moore's website for more info , thanks again Jane
I know several people who have had to have more than one shot at RAI as they went over active afterwards. Hypo results can be transient but not sure if it's the same for hyper, RAI can take a few months to take full effect but If you are heading hyper then it may be you will need another dose.
Hi
When you say hyper what do you mean? If you had RAI for Graves then you will be positive for TSH Receptor Antibodies (TRAB) (ie they block the TSH which is why your thyroid keeps making hormones even when you have too many) so it is not a good indicator of anything. If they are saying you are hyper because of a suppressed TSH then you need to do the Free T4 and Free T3 test to be sure. You need your blood test results. You also need to go on how you feel.
I think it's quite common for people to go hyper after RAI and have all kinds of instability as the thyroid spits out hormones.
Just because you've had RAI does not mean you won't have Graves any more so sorry to say you have a life long autoimmune condition and higher risk of other autoimmune conditions - you need to learn about your disease and learn to take care of yourself.
Also my doctor told me no woman of childbearing age should ever have RAI because of the risk of infertility - they'll tell you there is no risk but there is! A friend of mine had RAI and now can't have children, she's devastated. Not to scare you but I would strongly suggest you refuse any further radiation. Also I had surgery and post op all my sex hormones crashed totally and they just shrugged .... they'd promised me normality and you just take a pill and now I can't have kids either most likely ....I would not rush into anything, surgery is certainly no alternative.
You will never be normal - this is it, learning to live with this condition. However you can live with it quite well but it takes one heck of a lot of work. Making sure you do not go hypO are important for getting pregnant and finding a good environmental / functional medicine doctor to help your body recover from the massive dose of toxic substances you've just put into it.
Sorry to be direct, but please do not naively trust anything your doctor says - endocrinology is a corrupt discipline and in the dark ages and patients are rushed into very drastic treatments on the promise they'll be cured. It's not true.
You'll probably find some good advice on Elaine Moore's site elaine-moore.com/
Hope I haven't upset you but I get very cross at what doctors are doing to innocent patients.
It's not all doom and gloom as above post. Of course you can be normal, for others to imply otherwise is not at all helpful to you or others.
There is no reason why you shouldn't go on to have children, my sister had TT surgery and I had surgery and RAI and we both have 3 children each and all pregnancies were normal and all children are normal and healthy.
Take advice from your Consultants not from forums.
Hi! I just want to add to Hypohen - please do not feel scared or worried about some of the posts here - everyone is so different, and just because you have 'your' condition does not mean you will not go on to have beautiful healthy children yourself. Obviously it is very wise to wait because you would hate to inflict any radioactivity onto a new growing baby, but other than that any child has the same chance of being born healthy as for the rest of us. I would suggest that it is correct for you to boost all of your minerals and vitamin levels before you even think about it though, as your body has had one hell of a battering and is probably still very much in recovery. Personally I would wait a year before 'trying' to give yourself time for a full recovery. If you are really worried and can afford it, I would ask for recommendations on here and have a private session with a naturopath or a really GOOD endocrinologist - but only if you find a good one otherwise you may end up worse off! A naturopath would see the whole body, and make sure you are in tip top condition. You do need a FULL set of bloods to really understand what is going on - as has been said on this thread you cannot rely on the basic results as they can be skewed without the full picture - again - if you can afford it perhaps have a private test done, but be sure that it includes EVERYTHING - if you are paying you may as well cover the lot - check out the necessary ones on here but it must include FT4, FT3 T3 T4, antibodies, reverse T3 and all of the B12,C,D Folic Acid etc., I know it seems like a huge list but they are all very critical! (You may as well get the reproductive ones added while you are at it!) If you do all this, at least you will be ahead of the game with a clear start if you find it difficult to conceive too - which whilst I don't want to rain on your dreams, but might be the case as a human body has a way of only doing what is good for you if it behaves itself!!
Many people on here have had the most awful experiences - not many 'well' patients will be spending time on here because they will be healthy, happy and 'fixed' - and although there are a lot of members suffering dreadfully, you must be reassured that very many more patients are lucky enough to have had a successful treatment and are now back to a happy fulfilling life. I wish everyone could find that wonderful cure, but as with every illness, some people will still suffer. Most of us here are in this set!
I personally have been very much improved by my RAI treatment, but it took 7 years to have the treatment, and 4 years on I am still here, fighting to get better but increasing my knowledge and slowly taking steps to recover fully. I am lucky enough to have already had my children, one with endocrine problems, two perfectly healthy. Do not despair - read all you can on here, remember everyone is different, but use the information to help you push for answers and better treatment.
Love to everyone reading this from a fellow sufferer, I know how awful the suffering can be, but do please try and keep positive. x
I was told that PTU is the best anti-thyroid drug to use to treat Graves disease before and during pregnancy, so if you are hyper and would like to get pregnant this would be something to investigate. It is my understanding that if Graves disease is properly treated and controlled it is quite possible to have a normal pregnancy and delivery - but you must keep getting all your blood tests done regularly. Good luck
Girlscout, Why are you intent on worrying jrosebud with these links ?
The last one is not even relevant as it refers to thyroid cancer RAI which is different, a much higher dose is used and the side effects stated do not happen with the lower dose.
Millions of people have had RAI with no ill effects, have gone to have families and live normal healthy lives.
Sorry if it offends you but your posts are NOT helpful.
jrosebud has had her RAI and now needs to look forward to the future.
Hi
I am not trying to frighten her - I'm assuming she's a grown up and able to make up her own mind. I too have had life threatening T3 toxicity, I have Graves and I had thyroid cancer - after very careful research and with the full support of my doctors I did not do RAI after my TT. My friend had RAI for Graves in her mid thirties and within four weeks was plunged into the menopause. Five years later she still has hot sweats every THIRTY minutes. She's done everything - been everywhere - trying to get pregnant. They tell her it's nothing to do with RAI. Is she included in your stats?
And no offence, but what's it to you? When I was sick I found people giving me both sides of the argument incredibly helpful. If you want to be a cheerleader for endocrinology, knock yourself out.
I'm entitled to my opinion this is an open forum and my opinion is women of childbearing age should think twice before doing RAI and certainly doing it more than once. I know LOTS of people who have had a really horrific time after RAI. Not everyone, but more than the statistics show. Indeed cardiac problems are also a side effect of RAI.
I have a great endocrinologist (a professor_) now but he was my third opinion and by the time I found him I was nearly dead - because I trusted my doctors to know and they didn't know! I was misdiagnosed for over ten years. I've had to fight for my health and I wish I'd known then what I know now. My chance to have children is gone due to medical incompetence and me not truly understanding the implications of my treatment at the time. Doctors are far too blase... If I can save one woman from that then I will and I don't see what business it is of yours.
We are all trying to look forward to the future. Graves disease is a life long chronic disease. Managing it and life long thyroid replacement is no joke as you yourself know.
Hi jrosebud - as you can see RAI is an emotive subject!. You are probably more confused but I hope you can take some positive advice from fellow sufferers. We all have different experiences and opinions - and are free to express them (within reason).
Sadly 'normal' is a state we are all trying to achieve, and it tends to take awhile. Yes I agree that some doctors prefer to think that 'zapping' the Thyroid is best and that medication will 'cure' afterwards - but you must make up your own mind and research to find out what is best for you.
We don't actually know why you had RAI - I'm presuming it was over-active due to Graves, was an alternative offered such as Block and replace therapy? - perhaps this may still help, many seem to be on this regime for years.
All I can suggest is to post your results for others to comment and boost up any deficiencies in 'building block' minerals/vitamins, we are not experts here just fellow sufferers and I cannot say I have any experience of Graves myself - although others have. (I just had Hyper symptoms before my partial thyroidectomy for a 'dodgy' nodule, and am now hypo).
Meanwhile I hope you feel better soon, and better enough to try for a family - goodness knows why 'tho, I have 4 kids and 4 grandkids who drive me quite bonkers at times! (it's OK no-one notices!) With very best wishes, Jane
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