thyroid blues

[Bo]

Can anyone help??
My thyroid, so I've just been told, is wildly over active. I feel grim - really tired can't be bothered to do ANYTHING - my house is deteriorationg so rapidly, all that washing up...
The worst thing(well 1 of the 2 worst things) is that I don't get any sympathyor help from my husband, as he can't really register that UI'm not well. But the absolute worst thing is that I haven't lost an ounce! Why does the most common symptom pass me by?

anyway, I'm sure therre's others out there who've been in the same boat. Any ideas on making me feel better (physically and mentally - any sympathy gladly received) I haven't got my medication yet. Also did anyone breastfeed while taking medication for and over active thyroid?

[Jodee]

Hi Bo, I'm really sorry you are feeling so unwell, and it must be really difficult for you if your husband doesn't take your illness seriously. I've been there and got the t-shirt with my thyroid; after a severe shock about 5 years ago it went overactive, went up and down like a yoyo, the dr couldn't get the medication right (had to change drs as my original GP thought I was 'just depressed') and finally am now permanently underactive & taking thyroxine.

I was wondering how old your baby was, as you mentioned you were breastfeeding? I've got a helpful book called Thyroid Problems by Patsy Westcott specifically about thyroid problems in women (published by Thorsons) and I don't know if your dr mentioned it but there is something called Post-partum Thyroiditis which is a common problem after pregnancy when there is a temporary disturbance of the thyroid. Reading from the book: The condition usually strikes around 2 or 3 months after birth and takes the form of an episode of thyroid overactivity. This is followed by a spell of underactivity which comes on around 4 to 8 months after the birth. This, too, usually goes away and things return to normal. Some women, however, only experience the overactive phase while others go straight on to develop sytems of underactivity.

The book also mentions breastfeeding:
In the past, mothers taking antithyroid drugs were advised not to breastfeed because of the danger of drugs being passed on to the baby in the breastmilk. Although high concentrations of thyroid drugs have been detected in breastmilk, more recent reserach suggests that small amounts of the antithyroid drug Carbimazole (not more than 30mg a day) have no effect on the baby's thyroid gland, and that propylthiouracial (PTU) is only found in small quantites in breastmilk. A recent study ... suggests that breastfeeding is safe for babies whose mothers are taking PTU during and after pregnancy. Thus, experts now advise that provided you are only taking low doses of carbimazole, and are aware of the potential risks to your baby, then you may still breastfeed. However, if you plan to breastfeed for very long, your baby's thyroid levels should be regularly checked.
I hope this is a help - I took PTU but this was before I was pregnant. I was underactive with my baby and therefore was on thyroxine, which is OK to take and breastfeed.

Sorry for the waffle; I can't really give you any practical help other than drumming it into your husband that you REALLY DO have an illness and doing the washing up etc. would be a BIG help as you have a baby to look after! I'm sure you would start to feel better once you start your medication, though.
I do hope you are feeling better soon, take care.

[Alih]

Hi Bo

Sorry to hear you are feeling so down - I really know how that feels. I was diagnosed as desperately under active (hashimoto's thyroiditis) when my baby was around 3 mths old. My condition had got so bad that my body 'had just about given up' (according to the consultant.), and I thought I was cracking up, I was so weak! Please show this to your husband if it helps him understand that you really are ill. On the brighter side, once the medication kicked in, I now feel much better, but this is not overnight.

One slight concern is that you described your diagnosis as being overactive, but you seem to have the symptoms of an underactive thyroid(lethargy and the weight thing). I actually gained around 1 1/2 stone in weight after my baby was born, which was down to the thyroid problem. Sorry to get technical here, but is it your TSH level which is high? This means that your thyroid is under active - might be worth a discussion with the doc. Are you having treatment? If you have concerns, hassle your GP - I had to ask for the thyroid test myself which led to my diagnosis. Its really difficult to do when you feel so low, but trust me, you need to.

I really hope that you get the treatment you need - I was lucky to get referred to a consultant at our hospital, and I am now monitored every three months. All I can tell you is that you are not going mad (even though it seems that way when you are going through it!), and it will get better.

Also, I breastfed my daughter for three months after starting my treatment (artificial thyroxine 100mcg/day). No-one mentioned the possibility of any adverse reactions in the baby, but she was also tested for her thyroid levels, which were ok.

Sorry to have waffled on a bit, but I hope that I have at least helped you to believe that it will get better. You have to be strong and believe that, and you will get through. Good luck.

[Bo]

Thanks both of you for your information and support. this is actually my 2nd spell of hyperthyroidism. I had my 1st 4 months after my 1st baby, and the doctor also had a lot of trouble corret ing it - it went very underactive before balancing out. My baby is now 7 months old, and I was diagnosed last week & doc said I had to stop breastfeeding, and I was really upset because I didn't want to, so I explained I could w. 1st baby (it's a different doctor) so he looked it up on the internet(!) and finally said it was ok but still some risk. Jodee - you said it's ok if you're not planning to breastfeed for long - do you know how long is long?
anyway, I feel a lot better - mainly because I've stopped feeling sorry for myself, and accepted the fact that sympathy just isn't coming my way.

By the way, Alih, I agree with you that my symptoms seem to be classically 'underactive' - this was the case last time as well, but, as with last time, it's definitley over active - the only figure I know is that "it" is supposed to be 17 and it's 81. Didn't catch what 'it' was, so I don't know if that makes any sence to you.

Thanks a lot

[Jodee]

Bo, I don't have any more info on the exact length of time it's OK to breastfeed for, but why don't you try the Thyroid Helpline 020 8349 3974, or failing that NHS Direct may be able to help 0845 4647.

Best wishes,
Jodee

[Willow2]

Bo,
Don't know whether or not the following will help but here goes. I was diagnosed as having a very overactive thyroid fifteen years ago. I had had no idea I was ill - but had thought I was very stressed (new job, new partner, new home type stress). Had noticed that my hands seemed to shake quite a bit, and also that my neck seemed a tad bulgy (even mentioned that I thought I was growing an adam's apple to my mum!) but thought nothing more of it until the condition was picked up by a skin specialist who I was seeing for ezcema. Thank God he did as my GP didn't have a clue I was ill yet it turned out that I was so overactive that I was on the verge of a heart attack and was too ill to be operated on. For the next three months I was taking 16 different tablets a day including beta-blockers - these eventually helped reduce my thyroid levels enough for me to have the gland removed. I was in hospital for nine days (pretty grim) and when I came out my specialist explained that they take out more of the gland than they need to because it can grow back. So wheras I had been overactive I was now underactive. For the next two months I was left well alone so that the area could heal properly and my levels settle down. During that time I was absolutely exhausted, could rarely stay awake beyond seven pm and also put on two stone (oh great). Once they were able to check my levels it became apparent I needed to take thryoxine supplements and I was put on 200mcg a day - which I still take daily. It was only once I'd been stablised that I realised just how manic I had been in the past - all thanks to my thyroid.
To be honest I hardly ever think about my thyroid now. I just take the pills! I do find I get tired quite easily and that I have a tendency to put on weight (but that could be down to leading a busy life and liking cake) but apart from that the condition doesn't really cause me much bother.
Your husband really must take this condition seriously though - an untreated overactive thryoid can have terrible consequences. Maybe you should talk to your specialist about whether surgery is an option for you, ask also whether the medication you will be given has any side effects in the long term.
I have found a web site that seems to have a lot of information called Thyroid UK - I think the address is: homepage.ntlworld.com/rowleynet/tuk/
sorry I am crap at links! One other thing - check with your GP but I think you will be entitled to free prescriptions because of the condition.