Being treated for Graves' Disease and wanting to conceive

[TheGraveOne]

Hi! I'm new here!

My husband and I were hoping to start trying for a family this year but this has now been put on hold as I try and get myself in good health after being diagnosed with Graves' disease in May 2021 (positive TRAbs at 17.5 (range 0-1.5)).

I have been seeing an endocrinologist who is recommending I stick with antithyroid drug treatment with Carbimazole for 12-18 months (likely ending Sep 2022) before starting a family. She says I am responding so well to the medication, but I am left with a few concerns:

- By the time we get to end 2022 we will have postponed trying for a family by approx. 2 years

- The risk of relapsing after antithyroid drug treatment is fairly high (about 50-70% based on what I've read?)

- The risk of relapsing after pregnancy is even greater (about 80% based on what I've read?)

- I am fearful of relapsing and having to go down the definitive treatment route anyway (radioactive iodine or surgery).. so wondering whether I may as well take the leap and do it already to be able to start a family sooner

I can't seem to find any examples of women my age who are wanting to start a family and who are being advised to stay on medication and postpone trying to conceive by 2 years. Is anyone else in a similar position?

Am I on the right course of action given I'm of child bearing age and wanting to start a family soon - to remain on the small dose of 5mg Carbimazole until Sep 2022 (assuming my results remain in range) and then stop medication with the hopes that I will stay in remission even through (hopefully) future pregnancies.

My results and medication information since March 2021 are as follows...

Ranges:

T3 (3.1-6.8)

T4 (12-22)

TSH (0.27-4.2)

22/03/21

T3 30.7

T4 62.5

TSH <0.01

GP prescribed 20mg Carbimazole and 2x10mg of Propranolol per day

Endo was seen and I was told to remain on 20mg Carbimazole and increase to 3x10mg Propranolol per day

15/04/21

T3 11.4

T4 28.3

TSH <0.01

Endo reduced to 10mg Carbimazole, same Propranolol

10/05/21

T3 7.9

T4 19.6

TSH <0.01

Endo reduced to 5mg Carbimazole, same Propranolol

24/05/21

T3 6.3

T4 18.6

TSH <0.01

Remain on same Carb and Prop

28/06/21

T3 6.3

T4 19

TSH <0.01

Increase to 7.5mg Carb, same Prop

23/07/21

T3 4

T4 14.5

TSH 0.03

Remain on same Carb and Prop

27/08/21

T3 3.6

T4 11.5

TSH 2.65

Decrease to 5mg Carb and slowly stop taking Prop altogether over 2 weeks

5/10/21

T3 4.1

T4 13.2

TSH 2.00

Remain on 5mg Carb, no Prop

19/11/21

T3 4.3

T4 14.4

TSH 2.20

Remain on 5mg Carb, no Prop

Thanks so much in advance for any thoughts or words of encouragement!

[PurpleNails Administrator]

A healthy TSH is around 1, currently your FT4 & FT3 lower end. You could discuss reducing carbimazole further by taking alternate days or half a pill. Doctors view 5mg lowest dose as it’s the lowest manufactured.

I have heard of pregnant ladies with Graves & on medication, there is a preferred anti thyroid PTU (Propylthiouracil) which is used in 2nd trimester.

Something to discuss with your endocrinologist, you would need to be very careful monitored.

You must avoid conceiving for 6 months, if you did undergo RAI. Being stable once hypothyroid can cause issues too & seems many report it’s especially difficult after RAI. Doctors view hypothyroid as safer than hyperthyroid and easily managed by GP with replacement levothyroxine.

My specialist told me as I wasn’t going to undergo RAI soon I can be monitored by GP as she didn’t want me “on her books” I can be referred back once I’m ready to have the treatment.

You should also be offered the option surgery should you relapse or long term medication. All options have pro & cons & the wish to start a family must make it especially difficult.

[TheGraveOne in reply to PurpleNails]

Thanks for taking the time to respond PurpleNails, it is greatly appreciated!

Interesting to hear your point on T3 and T4 being on lower end - something I will definitely bring up with my endo when I next speak to her if my next blood results are similar.

Also interesting to hear about others who have had issues remaining stable after RAI. There certainly is no 'easy' option is there!?

I have also read of women who are pregnant and find out they have Graves' and are therefore treated with medication. I have also read of women wanting to conceive and being told to take certain medications with lower risks (including PTU). I have not yet heard of someone who has been advised to remain on medication and postpone conceiving until they come off the medication. I am sure there must be others out there though?

I brought up family planning with my endocrinologist at my last appointment and she seemed to get a bit frustrated by the discussion (potentially because we only had 15 mins to discuss results and everything else).

I think she is very keen to treat me for Graves' first and give me the best chance of entering remission since I responded so quickly to the medication. I believe she is advising me to do this before I go on to potentially complicate things with a pregnancy... but this is difficult for me to process as we'd really come around to the plan of starting a family soon and I don't want to leave things too late in to my 30s for fear of fertility issues. Maybe I need to readjust my expectations!?

[PurpleNails Administrator in reply to TheGraveOne]

chorobytarczycy.eu/kalkulator

Useful calculator to look at % through range.

FT3 4.3 (3.1-6.8) 32%

FT4 14.4 (12-22) 24%

I have a stable nodule (gradual rise) and specialist recommends the FT4 be mid range and FT3 be “anywhere in range”.

I don’t feel well with levels lower below 40% of range. Those who are Hypo and require replacement often require levels in top third. We are all different.

Doctors likely prefer your levels very low in case they begin to rise, it will be caught before going above range, with Graves levels can spike more unpredictably.

Your doctor should have been more willing to fully discuss the risks and all your options. sadly I found most appointments are rushed and doctors prefer to hand out a leaflet “which explains everything” (but doesn’t) than have a discussion with you especially factoring in personal factors. Doctors offer a single approach - which is to use anti thyroid for 18 months with aim of remission & RAI if not 8n remission, Having a pregnancy and small child would be a complication and remove option of RAI.

Doctors get unhappy if you don’t fit the one size fits all.

[TheGraveOne in reply to PurpleNails]

Thank you for the calculator - that is very helpful. I have not yet figured out where in the range works for me as I haven't had many obvious symptoms despite the changes in my levels. Thinking about it... more recently I've felt tired and lacked motivation which could possibly be a result of T3 and T4 being in the lower end of the range?

My doctor did explain the three treatment options (12-18 months medication, RAI and surgery) in detail during my initial consultations, however my concerns of wanting to start a family seemed to be pushed to the side and 'long-term' medication was the route of choice. When I brought up starting a family again recently she seemed surprised which confused me as I had definitely mentioned it numerous times before!

[PurpleNails Administrator in reply to TheGraveOne]

Some need a little longer, than 18 months. There no increased risk after 18 months and I haven’t found a scientific basis for limiting medication to 18 months. I’ve been taking Carbimazole 3 years and will need it life long.

Tiredness & low motivation can be symptoms of being too low but symptoms can be very varied. I had those symptoms when diagnosed & with an insane appetite, as I was undiagnosed for years I had gained a lot of weight. When low in range I lose appetite, but get depressed.

I find too big a adjustment of (both Carbimazole & propranolol) has an affect on levels which causes more symptoms than if levels change gradually. So I feel worse when levels are moving rather than stable at a lower end or higher level.

Propranolol has a mild anti thyroid affect & reduces FT3. I find I’m very sensitive to propranolol, I take a low dose for migraine prevention.

[kittyelen]

Huhh why are they saying postpone?

Yes you have to get in range first otherwise there can be risks. This is postponing in a way but for a sensible reason

I've been on Carb nearly 12M went into range quite quick and stabilised so I can come off Jan hopefully, and we plan to start trying next year. My endo advised me to let them know because even if I am on Carb they can switch to the other med if planning a baby.

My latest results are

Serum TSH level 0.87 miu/L [0.3 - 5.5]

Serum free T4 level 16.9 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 5.7 pmol/L [3.1 - 6.8]

So umm I hope things are ok on my next test. I am 35 so I get how you feel! I would say it is your choice to have a baby and mine said as long as you get the levels in range it should be ok to try, I would ask them more questions about it as you can be on that Propranolol alone when trying to conceive.

Pregnancy affects the thyroid anyway so you would be monitored for that regardless as they would be aware you have the pre existing condition

[TheGraveOne in reply to kittyelen]

Thanks for your response and sorry you're going through a similar situation.. I don't feel so alone now hearing from someone who is!

My endo basically said she would recommend continuing Carbimazole for 12 months from when my levels stabilised (which was on 27th Aug if you look at TSH alone, or 5th Oct for all levels). Then after stopping medication I would be monitored for 2-3 months and if I was in remission then we would be given the green light to start trying.

I mentioned at my very first consultations back in April/May of this year that our intentions were originally to start trying this year, and no other medication options were explained to me. I was told of the issues/concerns/risks related to RAI and surgery and since I was responding so quickly to Carbimazole was advised to continue down that route. I have since read online (and in forums such as this) that you can be treated with alternative medication (PTU), as you just described, when trying to conceive so I'm not sure why this wasn't mentioned at the beginning.

It is definitely something to bring up again in my next appointment, but with only 15 minutes it is hard to cover everything!

Your levels look great and I cross my fingers that everything works out for you with regards to remission and starting your family 🤞

[kittyelen in reply to TheGraveOne]

Ah thank you ! I think they all have their own opinions by the sounds of it, every doc/nurse will vary. Mine was actually quite supportive as I mentioned the pill made my periods stop, I am concerned it could take some time for them to come back to regular so I wanted to come off the pill but my GP said you can get pregnant straight away so they say to stay on the pill longer and come off 2 months before trying. My endo seemed to think my GP was not taking enough into account.

I've not been told of requiring remission before trying for a baby, just that 12-18M is standard for Carb and graves is something that can flare up again in the future but it may not be for many years anyway! You would still have blood tests after coming off to be monitored onwards, not as regular but it would still be checked yearly. If this is your first episode of graves I wouldn't even be thinking about that RAI stuff yet, I thought graves was quite common tbh if you don't want to delay 2 years you can speak to them for a plan of action, good luck!

[TheGraveOne in reply to kittyelen]

Interesting to hear your doctors thoughts on the pill as I’ve read cases of cycles not returning to normal for 6-12months, while others can return immediately. I came off the pill in Dec 2020 to give my body about 6 months to hopefully return to normal before we started trying for a baby, but I didn’t get my period which is what prompted me to go to my GP in the first place.

I waited 3 months with no cycle and then the GP did bloods which is how I found out I had an overactive thyroid. I didn’t have any obvious symptoms and probably would have carried on as normal if not for those results!

After starting Carbimazole I got my first real period since coming off the pill in May.. now I don’t know whether it was just my body taking its time after being on the pill for 10 years, or whether being treated for the overactive thyroid is what helped it return. Who knows?

This is my first episode of Graves’ to my knowledge (never had blood tests to check as never really had symptoms) so I think maybe you’re right to give the medication route a shot. It’s worth a try to see if I can be free of all medication at least for a few years.. fingers crossed.

Thanks so much for your replies - it’s been helpful to hear from others in the same situation. I don’t think it’s easy for people to empathise if they’re not in the same position, which has left me feeling a bit lost over the last few months!

[kittyelen in reply to TheGraveOne]

Oh crikey thanks for your reply! That's what my endo said but my GP told me to stay on the pill. I think if I can come off Carb Jan then I will say I want to come off the pill at the same time (I told my GP I was concerned as my periods were always irregular before going on the pill anyway - and I have suspected PCOS from excess body hair!! Which oh they cannot test for as I am on the progesterone pill!)

I think you have made me realise I should stick with my gut instinct that periods could take some time to settle back and maybe we should not wait to come off just a month or two before!

[pennyannie]

Hello TheGraveOne and welcome to the forum :

Graves is an autoimmune disease and you can't put a time limit on when you'll find, or if you ever do find remission, there is no cure for Graves and all the AT drug does is to block your T3 and T4 rising any further and causing further havoc for your whole body.

There is no point " looking for remission " if your antibodies are still over range and positive and thinking that by removing the thyroid gland with either surgery or RAI ablation is simplistic and doesn't necessarily solve anything and in many cases simply compounds the patients health and well being.

The thyroid is the victim in all this and not cause :

The cause is that your immune system response has been triggered to attack your body and since the thyroid is a major gland, the body's engine, Graves is considered life threatening if not medicated.

So the AT drug is rather like being put on automatic pilot with the endo having the control stick and in charge of your metabolism and well being, and as your thyroid hormone levels drop, your AT drug should be titrated down so to not leave your T3 and T4 too low in the range as you will then experiencing the equally disabling symptoms of hypothyroidism.

When your metabolism is either running too fast or too slow there is a risk of your body not being able to extract essential nutrients from your food so you need to also keep an eye on keeping optimal levels of ferritin, folate, B12 and vitamn D to keep your core strength strong and solid during this first phase of this disease.

I believe people who are pregnant are switched to Propylthiourcil ( PTU ) when pregnant or when Carbimazole doesn't agree with them.

I was diagnosed with Graves age 56 so haven't anything to add, but suggest you dip into the Elaine Moore Graves Disease Foundation website, start reading up, and become you own best advocate.

Elaine has Graves and finding no help with her continued ill heath after RAI started researching this poorly understood and badly treated AI disease herself and is now a leading advocate and has a world wide following and offers an open platform, much likes this amazing forum where you can ask questions of the community and Elaine takes an active role when she can.

Graves is said to be a stress and anxiety driven AI disease and likely there is a genetic predisposition maybe a generation away from you with someone dealing with a thyroid health issue, and something might have happened to trigger your immune system to go on the attack.

Elaine covers all aspects of Graves especially research into more holistic, alternative options of treatment and the reasons why your immune system may likely be upset

Elaine offers suggestions of what you can do for yourself to help yourself calm down your own immune system response as currently mainstream medical have no answers other than to block your system with AT drugs and play for time.

I had RAI thyroid ablation in 2005 and now manager lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism and need to self medicate with full spectrum thyroid hormone replacement if I want any quality of life.

P.S. Graves antibodies can distort TSH readings so please remember to track on your T3 and T4 levels.

[SlowDragon Ambassador]

Make sure you regularly retest vitamin D, folate, ferritin and B12

Hashimoto’s and Graves’ disease both frequently result in very low vitamin levels

Obviously vitamin levels need to be optimal BEFORE considering TTC

Have you had coeliac blood test….get tested BEFORE considering trial on strictly gluten free diet….frequently helps

[bantam12]

I was diagnosed with Graves aged 12, as a teen I had a partial thyroidectomy and then got on with life, after my 3rd baby was born in my 40s I relapsed big time, tried all the meds again but couldn't get anywhere near remission so I had RAI, best thing I did and wish I had done it earlier !

Only you can decide what's best for you, good luck.