Undecided on treatment

[Jenka]

I’ve read so much about RAI and anti thyroid drugs and I still can’t decide which route to take. I know there are risks with both. I have been diagnosed with Graves and I’m currently on Propylthiouracil. I would like to get pregnant at some point so if I go down the tablet route and end up in remission, is it likely to come straight back? Can anyone help? Thanks.

[greygoose]

Did you ever find out about the antibody tests that people asked you about in your last post two months ago? I think before I had any treatment, I'd want to know if I actully had the disease.

[Arrigo]

I've had Graves for 5 years, been on methimazole. They likely have you on PTU because of your desire to get pregnant: PTU is less risky to the fetus than methimazole. It is crucial for you to test for Graves antibodies, to make sure Graves is indeed the cause for your hyperthyroidism. I believe that if your medication course goes past 18 mos. and no remission has been achieved, the chances of remission dip dramatically. Also, remission varies with the individual; it can last for years, or for months. My own decision has been that I will have a thyroidectomy, because unfortunately I never did enter remission on the pills... RAI has been shown to have a link to aggravated or de novo TED, so will avoid that. Good luck on your journey.

[NWA6]

Thyroid runs in my family but most of us have been hypo. But as it turns out my sister went hyper. We were both diagnosed within a couple of years of each other but we aren’t that close. Fast forward 12yrs and we get on better and just yesterday she phoned for a catch up and we started talking about thyroid. She too was put on Propylthiouracil and given Levo. Simple block and replace.

She then started training for an Iron man so went back for another check up. She had TED and a goitre. They suggested RAI but she refused as she thought she could get through it all and was also going through adoption at that time and it would mean time away from her new son.

It has worked for her but now she’s let the hypo symptoms spiral without taking control of them because she was always told that hypo is not as bad as hyper which couldn’t be further from the truth.

I would continue with the block and replace without RAI if it were my treatment because they don’t treat hypo very well and that’ll interfere with getting pregnant. I’d rather run slightly hyper than hypo.

As a side note I am desperately trying to get more info from my sister to see if she ever had the antibody test for Graves as I think it’s important to know. She remembers having a severe throat infection and then everything kicked.

[jimh111]

It's very important to check for Graves' antibodies as they cross the placenta and can cause hyperthyroidism in the unborn child. The doctors need to be aware of Graves' antibodies so they can monitor you properly.

Also see this post I raised recently healthunlocked.com/thyroidu... . Graves' antibodies hang around much longer after RAI so RAI is not a good choice for someone planning a pregnancy.

I've never had Graves' thankfully so I don't have any personal experience.

As far as I know you have been diagnosed with hyperthyroidism not Graves'. Hyperthyroidism can be a temporary conequence of Hashimoto's and other thyroid disorders. Your doctor should not assume Graves' until they have tested for Graves' antibodies, usually a TRAb test.

[Fruitandnutcase]

I would want to have everything possible tested before I would consider RAI - then I’d refuse it anyway.

I became hypo for a while while being treated for Graves (I’m in remission now) . Hypo is totally different to being hyper but it is very unpleasant too and I wouldn’t want RAI because you are very likely to become hypo and I’m not confident I would get the medicines I would need - or enough of them - to make me feel well.

I feel doctors have to do something if you are very hyper but I’m not sure they are so keen if you are hypo and I always felt offering me RAI should I relapse was just a way to get me off their list and back to my GP who may or may not have been able to keep me feeling well.

On the other hand some people have no problems after RAI but it isn’t a risk I’d want to take.

That is purely my personal opinion though - I’m not medically qualified.

[Lora7again in reply to Fruitandnutcase]

Elaine Moore had RAI and now regrets it.

[Gingernut44 in reply to Lora7again]

And so do I, it’s one of the worst decisions I’ve ever made (pushed into)

[pennyannie]

Hello again Jenka

It was only just 2 months ago that you posted your first question where I asked you to confirm back to us exactly what you have been diagnosed with, as hyperthyroidism is a symptom, generally of either Graves or Hashimoto's Disease.

Are you now saying that you have the medical evidence of a blood test result showing a positive for either or both the TSI ( stimulating ) or the TRab ( blocking ) antibody ?

If you have Graves Disease generally there is a 15-18 month window in outpatients where the anti thyroid drugs will be prescribed to block your own thyroid production as you ' ride out ' this hyper phase of the disease, so you have no need to make such an important decision yet.

If you want to read further around this subject suggest to dip into the Elaine Moore Graves Disease Foundation website.

I was told I was to have RAI at my very first endocrinology appointment and I knew no different and thought it was in my best interest as that is what I was told - I deeply regret this treatment and didn't know there were any other options back in 2005..

Professor A Toft the eminent endocrinologist in his retirement year from the NHS wrote a very interesting article that is on this website somewhere. Entitled Thyroid Hormone Replacement - A Counterblast to Guidelines in which he states :

" I am so concerned about the state of advice on the treatment of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "

There is no problem staying on the AT drugs long term - you can be monitored through your pregnancy. The other two options are a thyroidectomy or RAI. - both drastic actions and both of which will necessitate you taking medication for life as you will become hypothyroid and it is not easy to treat - contrary to what the NHS may tell you.

Long term AT drugs are a much safer option than RAI which is a toxic substance that slowly burns out your thyroid in situ and is also taken up to a lesser extent by other glands and organs within your body, and might cause you to develop thyroid eye disease, as the level of dose required and it's consequences within the body still seem to be a questionable.

I now manage lingering Graves, thyroid eye disease and hypothyroid and have received no help or advice from the NHS with my continued ill health. I am now self medicating, buying my own thyroid hormone replacement and looking after myself, and am much improved and have my life back from being thought housebound by the NHS.

Graves is an auto immune disease and is not caused by your thyroid - your thyroid is the victim in all this and not the cause - the cause is your immune system attacking your body and it's because the thyroid is such important, major gland, the symptoms experienced when the thyroid is attacked and goes a bit haywire can be in some people as considered life threatening.

[jimh111 in reply to pennyannie]

Just a minor correction. TRAb test detects the existence of antibodies attaching to TSH receptors. TSI and TBI are 'biological' tests that identify stimulating or blocking TSH receptor antibodies.

[Valarian]

If you have RAI, you will almost certainly be advised to to get pregnant for six months. christie.nhs.uk/media/2232/...