Family planning treatment advice

[TrashPanda31]

I am planning on trying to get pregnant in the next year or so. I don't know if it's best to have Radioactive Iodine treatment before hand or stick with medication, taking in to consideration the risks associated with each treatment. My thyroid levels at the moment are stable on 5mg carbamizole. I have had a couple of relapses since I was diagnosed with graves disease 3 years ago. Any advice/experience in this area would be much appreciated.

[TrashPanda31]

I realise I will probably have to have Radioactive iodine treatment at some point it's just is it better to have it done before starting a family??

[PurpleNails]

What have your doctors explained to you? Doctors tend to advise definitive treatments after a trial on carbimazole. Usually around 18 months.

Removing the possibility of becoming hyper again is explained as the safer option as medics view hypo easily treated by GP.

In my opinion It’s also a policy driven by long term cost effectiveness as specialists monitoring hyper patients on wait lists is expensive. RAI is very easily administered in a short out patient appointment.

The majority do well after treatment. Less than 10% require additional doses. Well over two 3rds become hypothyroid. They full affect of treatment can take some months. You must wait 6 months after treatment before trying to conceive.

However a minority do struggle to be adequately replaced after treatment and this appears to be because GPs dose by TSH alone and patients remain in a hypothyroid state or conversion to FT3 is significantly compromised long term & low FT3 = hypothyroid symptoms.

Doctors don’t really fully explain or a tend to later acknowledge this. Hospital specialist do not deal with long term results. GP say your TSH is in range its not due to thyroid.

I decided while I was well controlled & stable on carbimazole (for hyper nodule) I would not proceed to RAI, but I’m passed having babies.

Propylthiouracil (PTU) is an older antithyroid medication & usually used during pregnancy. Was this option ever discussed with you?

You do have a third option of surgery which would remove the delay of waiting 6 months for the toxicity to clear and you may find as the thyroid is immediately removed rather than the gradual destruction from RAI getting stable may be easier. Unfortunately not always - either step is irreversible and carries risks.

How was your Graves confirmed?

Did you start on a higher dose and adjust down as that’s a very low dose.

Often when doctors have you on a low dose it’s not because thyroid levels (FT4 & FT3) are high it because the TSH is low (the thyroid stimulating hormone is a pituitary hormone which “reads” the thyroid levels and alters to signals so the thyroid how much it should produce.

What are your results? For full thyroid function you needs.

TSH

FT4

FT3

TPO & TG Antibodies

TSI or TRab antitbodies if Graves suspected.

Also important to test

Folate

Ferritin

Vitamin D

B12

Any eye issues? (RAI should not be used if there are signs of thyroid Eye disease)

I recommend you post on the main thyroid forum as there some who have had the procedure and it’s a busy forum with knowledgeable members.

Hospitals often give out this leaflet about RAI. It’s factual but many view it as glossing over the potential risks but this is how doctors view the treatment.

btf-thyroid.org/treatment-o...

[TrashPanda31 in reply to PurpleNails]

Thank you for your reply I will post on the main thyroid page afterwards.

But in response to your questions:

I have been given a choice with regards to my treatment and family planning. They seem to be pushing RI treatment more than surgery or staying on carbamizole /changing to PTU medication. They have explained some or the pros and cons of all these options. Emphasising like you said it being safer removing the possibility of becoming hyper, with hypo being easier to monitor and treat. I agree with what you say about the costs! I do have the leaflet they send out too.

Graves disease was confirmed by testing for antibodies.

I did start on a high dose which was gradually reduced. The couple of times I have come off carbamizole completely I become hyper again. With regards to the TSH, it has always been supressed hence the low dose I suppose.

I don't have any figures for recent tests. Nurse told me thyroid levels are under control, TSH supressed. General blood function tests I have come back fine.

I have taken a picture of results I got on the 4th April 2022.

I do get itchy/ tired eyes when I am hyper and am sensitive to light.

Test results

[PurpleNails in reply to TrashPanda31]

Positive Trab confirms Graves. Your FT3 is high in that test. Has that come down?

Always obtain your results and track your progress. It helps you understand how you respond to medication & you would be surprised what get overlooked by drs/admin.

I am the same with suppresses TSH. It’s never risen into range, has been years, even when frees very low.

It sounds like doctors have given all your options & information which is very good and as it should be - as many feel they are ‘pushed’ into it.

That also means the decision is with you which is the difficult part.

[TrashPanda31 in reply to PurpleNails]

Hi PurpleNails,

FT3 has come down now, feeling a lot better at the moment.

I agree it is good that they are trying to advise me and leave me with the final decision. Does leave me a bit confused in the mean time.

Thank you for your help.

[pennyannie]

Hello TrashPanda and welcome to the forum :

As your eyes are already involved RAI should be " off the table " and not even considered as this is known to exacerbate symptoms.

I would think as you say you feel pretty much stable that switching to PTU the best solution and if push comes to shove consider a thyroidectomy.

You might like to read around Graves Disease and the most well rounded of all those I dipped into is that of Elaine Moore's Foundation : elaine-moore.com

The most current research is suggesting that long term AT drug offer a better outcome for the patient : after all we are looking at a auto immune disease for which there is no cure.

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

I'm with Graves post RAI thyroid ablation in 2005 and now self medicating as currently the NHS do not offer full spectrum thyroid hormone replacement - details on profile page.

You might like to delete the duplicate post on Thyroid UK as I think these 2 sites now seem to be merged and this post will appear ' on the other forum " anyway.

P.S. Whatever lotions, potions, drops and gels you may use to ease your eye symptoms, please ensure they are all Preservative Free - even those prescribed :

[TrashPanda31 in reply to pennyannie]

Hi Pennyannie,

Thank you very much for all the information and sharing your story with me. I will check out all the links

As long as my thyroid levels are okay I don't seem to have trouble with my eyes apart from hayfever at the moment!

[PurpleNails in reply to pennyannie]

Both Graves forum & thyroid forum posts will show in your feed if you are joined to both - but I don’t think the thyroid forum sees Graves forum posts.

Passed couple of months theres been under 10 new posts & replies have been either me or you!

[TrashPanda31 in reply to PurpleNails]

I decided to post in the thyroid UK in the end for those reasons

[pennyannie in reply to PurpleNails]

I know - it gets a bit silly really -

HU are still looking for someone to be the Community Ambassador for Graves Disease - and speaking as a Graves patient, maybe HU have no understanding how stressful this may well turn out to be for this person.

Onwards and upwards !!

Take good care - I enjoy learning from you :