Coexisting Graves and Hashimotos

[GP46]

Does anybody have any experience of dealing with co-existing Graves and Hashimotos?

My latest antibody tests show:

Anti TPO >1000

Anti Tg - 208

TSI >40

These are regularly tested and have been like this consistently for the last 2 years.

I have had 1 short episode of hyperthyroidism, but overall am profoundly hypothyroid.

TSH has been >30 for the past 2 years.

FT4 has been just below range for the whole 2 years (around 9 - 10)

FT3 is always in range, although low at around 3.5-4.1

**all standard NHS testing ranges

My problem is that any form of thyroxine replacement immediately brings on hyperthyroid symptoms and is intolerable. I have tried all different brands and dosages of both T4 and T3 replacements.

The hyper symptoms start within a couple of weeks of T4 replacement or much quicker with any T3 replacement.

The hypothyroid symptoms are now quite worrying. I am pretty much housebound with pain and exhaustion. I am also now suffering chest pain, breathlessness and have both high cholesterol and a high platelet count.

Any suggestions welcome as future is looking pretty bleak right now.

[SlowDragon Administrator]

Are you being managed by thyroid specialist endocrinologist

Are you on Carbimazole and Levo ……known as “block and replace “

What are vitamin D, folate, ferritin and B12 levels

Are you on gluten free diet

[GP46 in reply to SlowDragon]

Hi - yes, I see an NHS thyroid specialist every 8-12 weeks at the moment.

I am not on any anti thyroid meds or any type of thyroid replacement at all.

I have worked very hard to get all Vitamins, folate, ferritin etc into optimal levels, and I am completely gluten free.

[Buddy195 Administrator in reply to GP46]

Have you ever tried liquid Levothyroxine as an alternative?

[GP46 in reply to Buddy195]

Yes, liquid levothyroxine had just the same effect 😔

[asiatic]

How awful for you having both. As @ SlowDragon mentioned - have you ever tried Block and Replace to even out the swings between hyper and hypo

[GP46 in reply to asiatic]

I have never tried block and replace although I am wondering whether to suggest this at my next Endo appointment.

I have been on no regular medication of any kind now for nearly 2 years and my overall natural state is consistently hypothyroid despite the presence of antibodies for both Graves and Hashimoto’s.

The hyper symptoms only seem to really kick in with any sort of artificial T3 or T4 replacement.

I wonder if taking Carbimazole at the same time may help to prevent it. That is one thing that I haven’t tried. Not sure endo will go for it when my TSH is so high and my thyroid hormone levels are so low 🤷‍♀️

[asiatic]

The way I look at is you are running out of options so it is worth a try as long as the endo is testing regularly. Hopefully he has experience in using B &R. I have noticed some endos use quite a high dose of Carbimazole but like you I was hypo when I started and 10mg . Carbimazole was enough to block while 50 mcg. Levo was added in which had to be gradually increased. It might be worth discussing this with your endo and I wouldn't worry too much about your TSH as long as T4 and T3 levels are fine