Hyperthyroidism

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Following the birth of my son five months ago I've been diagnosed with hyperthyroidism. The GP didn't prescribe me any medication as I'm breastfeeding, but he referred me for an emergency appointment with an endocrinologist. I'm feeling really anxious about my appointment and my diagnosis. Has anyone else been through similar?
TIA

They will probably put you on low dose of carbimazole which can resolve it

Thanks @CherrySocks do you know if that medication is ok when breastfeeding? My doctor said the main medication that's normally used in my case isn't allowed when breastfeeding

Sorry I don't know, I was thinking they would wait until you weren't breastfeeding.

@CherrySocks thanks anyway. That's what I'm worried about, he is only five months and I was planning on breastfeeding for much longer than this so I'm anxious that they will try to get me to stop breastfeeding for treatment!

It's only OK to take when breast feeding if it's a very low dose. To be honest, you may need to knock the breast feeding on the head as it is important to treat hyperthyroidism. Left untreated can make you pretty unwell.

@Bellybootcut yes that's my fear, I'm already feeling quite awful but I'm hoping it won't come to that!

I had this some years ago. I wasn't breastfeeding though.

Hyperthyroidism is serious. It causes all body systems to speed up, sometimes quite dramatically. It will need to be treated, as it can become dangerous.

The usual treatment of choice is carbimazole, which I took for a couple of years. It blocks the thyroid from taking up iodine and converting it to thyroxine.

I don't know for sure, but I suspect it could be contraindicated if you are breastfeeding because it could affect your baby's thyroid function if it gets into your milk. I think I did read that somewhere. So I wouldn't be too surprised if they urge you to switch to formula.

It could well turn out to be Graves Disease, which is an autoimmune condition that causes hyperthyroidism. It is the number one cause of it, although not the only one. It is what I have. Mine is now under control. My thyroid was blitzed with radioactive iodine and I now just have to take a safe daily dose of thyroxine.

Topseyt. I had the radioactive iodine treatment ago. For the last few months I have felt unwell but have had blood tests to check thyroid. I was not given any medication. I have some of the symptoms of Graves . What symptoms did you have before diagnosis ?

I was prescribed PTU (propylthiouracil) when diagnosed with and admitted straight to hospital with Graves Disease/Hyperthyroidism at 9 weeks pregnant. Then switched to carbimazole once I'd stopped breastfeeding.

I stopped taking it 1.5 years or so ago thinking I'd be fine/was back to normal (was also afraid of getting hypo symptoms on carbimazole) and lo and behold my symptoms are now back and blood test shows hyper again (although less severe than first time). Am off back to consultant. Really don't want RI treatment. Need to get better at taking meds.

I find it all so confusing and am annoyed with myself for not understanding my own condition.

Hope you get sorted OP 💐

@Topseyt
Thank you for that, my appointment is tomorrow so not long to wait. I've read mixed things online about the medications online so I'm hoping they will have a solution for me that will mean I can still breastfeed. But if not then I will have to switch to formula because I can't carry on much longer with these symptoms I feel awful!

@ViciousTrollop thanks for your help, so you took PTU while pregnant and while breastfeeding? Did your baby have to be monitored while you were on the medication? How long were you on them for before switching? Sorry for all the questions but I'm very confused by all of this too! I hope all goes well for you and you don't have to wait too long for a consultant appointment! I was going to have to wait til October for the nearest appointment but because of breastfeeding my GP managed to get me an emergency appointment!

Yes I've had this too, and still have it. It appeared when Ds was a few months old and I lost a lot of weight and was hot all the time with a heart rate of 90-100.
The GP put me on low dose carbimazole which worked fine, but when I saw the endocrinologist he suggested I switch to the alternative medication (PTU- can never remember the longer name) as I was thinking about ttc no. 2 and carbimazole isn't compatible with pregnancy.
Unfortunately I had a severe allergic reaction to the PTU (liver began to fail). This potential side effect is the reason that carbimazole is the first line of treatment. Although obviously I was just unlucky!

@Ker100 sorry to hear that you had an allergic reaction, that's awful! Did they put you on anything else that was ok with pregnancy or did you have to go back onto carbimazole? Also can I ask, were you breastfeeding at all when diagnosed?

I had to have extra scans and blood tests while pregnant to monitor baby's growth etc. Took PTU all the way through pregnancy and breastfeeding.

When DS was born he had an excess of my thyroid hormones so had hyper symptoms i.e. was underweight (Barely 7lb at 42 weeks and if you saw him now he's a big tall strapping lad, definitely should've been bigger at birth) and had spots all over and his eyes were swollen ☹️. This all settled down very quickly once he left my (toxic!) body and he's been fit as a fiddle ever since. He's 5 now and has never even been to a GP once!

It's so hard to assimilate all the information that comes with with thyroid conditions. Feel like I need a medical degree to figure it out.

I wasn't breastfeeding no- DS was born very prematurely and had feeding issues so we'd stopped by then.

Not back on carbimazole yet but I will be soon, just have a very long wait at the local hospital to see an endocrinologist. I should chase it up really but once I restart the carbimazole I won't be able to have another child and the reality is still sinking in! Luckily T3/T4 levels are not as high as when I was first diagnosed.

Don't let my experience put you off the PTU though, it's a really rare reaction.

Sandgrown, I had very severe irritable bowel, a very fast heartbeat with some breathlessness, an increasingly severe hand tremor and a dislike of warm temperatures.

I dramatically lost weight too despite a huge appetite (it sends the metabolism into overdrive, causing food consumed to virtually just run straight through and the body to begin to starve).

My periods also stopped although I wasn't pregnant (DH had had the snip). Absence of menstration is one of the symptoms as the disease advances.

I was getting very close to crisis levels by the time blood tests detected the problem.

Carbimazole did bring it under control, but when it was stopped to see if I would remain in remission I relapsed very quickly. I chose to have RI treatment then rather than continue indefinitely with the carbimazole. The only other option would have been surgery to remove my thyroid, but RI treatment avoided that.

I now just have to take my daily dose of thyroxine and have a yearly blood test to check the levels are fine and I am good.

If you have already had your RI treatment (Sandgrown) then maybe it wasn't a sufficient dose to completely kill off your thyroid, so the antibodies can continue to make it hyperactive and cause problems?

@ViciousTrollop glad to hear it didn't have any lasting effects on your son! That really is great news and fills me with some hope for my appointment tomorrow! Thank you!

@Ker100 I'm sorry that this means you won't be able to have another child, that must be really hard to take in. Hope your next appointment goes well and thanks for sharing your experience

OP if you do have to stop breast feeding don't beat yourself up over it. Baby needs you to be well and will do perfectly well on formula. Hope you get sorted at your appointment x

Ask for PTU rather than Carbimazole and you will be able to continue to BF.

Good luck

Thanks @Bellybootcut and @NaToth. I had my appointment this morning and he said that PTU would be the best option when breastfeeding however my first blood test showed high levels of liver enzymes and so he made me so another blood test to double check them as I won't be able to take PTU if my liver is still like that because there is a risk of liver failure. The other option is a low dose of carbimazole but small amounts of that do enter breastmilk, although he said it shouldn't be enough to harm my son if kept at a small dose!