Graves Disease Diagnosis

[Emjh]

Hello, I have recently been diagnosed with Graves disease 5 months postpartum. I have no symptoms other than the GP noticing a goiter in my neck and subsequently taking bloods that resulted in the diagnosis.

I am under an endocrinologist who is recommending I start medication but I am not very comfortable or confident with the options. I am also breastfeeding my baby boy and plan to do IVF again at the start of next year so want that to be considered in my treatment. I also have a history of miscarriages.

1. Is it possible that I have postpartum hyperthyroidism instead?

2. Would a more permanent treatment for Graves disease not be a better option than tablets as I plan to have multiple more children?

3. Can I breastfeed on Propylthiouracil?

Any advice is appreciated. I am aware that the doctors know what they are doing but I am only 26 and symptom free so feeling very unsure of which route is best for me.

[Buddy195 Administrator]

Can you share thyroid blood test results for TSH, FT3 and FT4?

Just checking that correct antibody tests have been completed to confirm Graves:

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

[Emjh in reply to Buddy195]

Hi, thanks so much for your reply. I just got a copy of my results from GP: Free T4 37TSH <0.03

T3 not tested

[Buddy195 Administrator in reply to Emjh]

I would still push for the correct antibodies to be tested to confirm Graves (as I was initially misdiagnosed as Graves- although presented as hyperthyroid- I followed advice from SlowDragon and others to check this)

Definitely ask for following to be tested in addition to thyroid antibodies: FT3, plus key thyroid vitamins (folate, ferritin, vit D, B12)

[SlowDragon Administrator]

welcome to the forum

What are your actual thyroid and vitamin results

You need TSH, Ft4, Ft3 tested

Always test early morning

Also to definitely confirm Graves’ disease

TSI or Trab antibodies. Usually has to be tested via endocrinologist not GP

Also test TPO and TG antibodies for autoimmune hypothyroid thyroid disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results before becoming increasingly hypothyroid

Hashimoto’s frequently starts post partum

Also important to test vitamin D, folate, B12 and ferritin

What vitamin supplements are you taking

[Emjh in reply to SlowDragon]

Hi, thanks so much for your reply. I just got a copy of my results from GP: Free T4 37

TSH <0.03

T3 not tested

[SlowDragon Administrator in reply to Emjh]

Can you add range on Ft4 - it looks very high

No antibodies tested?

Or vitamin levels?

[Emjh in reply to SlowDragon]

Range says 11 to 27 😊

Ferritin was tested but normal but nothing else tested.

[SlowDragon Administrator in reply to Emjh]

Can you add actual ferritin result

[Emjh in reply to SlowDragon]

It was 114 (range 13-300) I am on ferrous sulphate X2 tablets a day though for low iron and gave been for 10 years 😂

[PurpleNails Administrator]

Looking at letter - suggesting 12 months of antithyroid is a rush / limited treatment plan. Most hospitals stick to 12 or 18 months but many do well on longer term anti thyroid.

PTU is used during pregnancy - you be switched back to carbimazole post partum.

If you do not have severe symptoms I would suspect your TSH, thyroid stimulating hormone (the pituitary signal) is low making drs think you are hyper. This doesn’t always cause symptoms. High FT4 & FT3 thyroid hormones do & usually graves causes very levels & severe symptoms.

There’s other reason for abnormal TSH & where your FT4 & FT3 are very important.

If your are confirmed with Graves you could request early definitive treatment. This often alters you to hypothyroid which doctors view as easier to treat with replacement. Some doctors would agree as this means you do not need to be monitored longer term by specialist and can be discharged back to GP.

Radioactive iodine means you would need to isolate which is not suitable with young baby & delay pregnancy plans so you’d be looking a surgery.

First confirm you have Graves with positive TSI or TRab results.

[Emjh in reply to PurpleNails]

Thank you! This is helpful 😊

[greygoose]

Hi Emjh, welcome to the forum.

I think it's quite rare to develop Graves' post partum. Usually - and very frequently - it's Hashi's. Hashi's - or Autoimmune Thyroiditis - starts with a hyper phase because the immune system is launching an initial attack on the thyroid, and the dying cells leak their stocks of thyroid hormone into the blood, causing FT4 and FT3 levels to rise sharply. The shocking truth is that the majority of doctors don't know the difference between the initial hyper phase of Hashi's, and Graves', and are too pig-headed to do the correct blood tests. And they always seem to assume it's Graves'!

So, if I were you, I wouldn't do anything, take anything or decide on anything until the correct antibody testing has been done and you know which you have.

PS Where thyroid is concerned, doctors rarely know what they're doing!

[Emjh in reply to greygoose]

Thank you, this is very helpful! I have another appointment on Friday and have this far refused any treatment. I really am clueless on anything to do with the thyroid!

I just got a copy of my results from GP:

Free T4 37

TSH <0.03

T3 not tested

[greygoose in reply to Emjh]

Did he not give you the ranges? Your FT4 is high but without the range we can't tell how high.

As others have said, you should still insist on having the correct antibodies tested to be sure.

[Emjh in reply to greygoose]

Results with ranges

Results

[greygoose in reply to Emjh]

ok, so it's not that high, given that the top of that range is exceptionally high; My gut feeling is that you have Hashi's rather than Graves'. Such a shame that they never test the FT3!

[Insomania]

This is an amazing resource on medication safety while breastfeeding, run by passionate pharmacists. So much misinformation around.

breastfeedingnetwork.org.uk...

[Emjh in reply to Insomania]

Thank you!

[humanbean]

Additional info can be found in the Electronic Medicines Compendium (emc) too :

medicines.org.uk/emc/search...

It includes

SmPC i.e. Summary of Product Characteristics and

PIL i.e. Patient Information Leaflets

I don't know if either of those documents give more info than the BNF, but it would be worth checking it out.

[Emjh]

Bloods:

Free T4 37

TSH <0.03

T3 not tested

Ferritin 114 (I'm on ferrous sulphate already)

[Emjh]

Results from GP with ranges

Results from GP