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Over-active thyroid - tell me it's not so bad

(23 Posts)
Reredos Thu 17-Jul-14 22:21:45

Had blood tests on Tuesday as I have been feeling poorly for weeks now. Very sore throat, debilitating tiredness, sudden weight loss .... Nurse rang today to say that Dr needs to see me next week as I have an over active thyroid.
I didn't google - I know that's bad. Instead I searched the Mumsnet archive. All I can find is that the treatment Carbimazole is awful and makes you feel even worse.
This is not a good time in my life to be ill. Please tell me that it isn't going to be so bad.

MaloryArcher Thu 17-Jul-14 22:30:41

Hi Reredos smile .

I was diagnosed hyperthyroid/Graves Disease in January after being admitted to hospital with some quite scary symptoms (v fast heart rate, palpitations and anxiety) It was all the more complicated as I was and still am pregnant.

I'm taking propylthyouracil and it made a very fast and positive difference with no real side effects. It's great to feel (semi) normal again!

Hopefully the carbimazole will do the same for you thanks .

Reredos Thu 17-Jul-14 22:38:59

Thanks Malory, it's all a bit of a shock. Hopefully yours is caused by your pregnancy hormones and will get better once you have had your baby - see, I have read loads tonight smile

mrsminiverscharlady Thu 17-Jul-14 22:41:54

I had no problems whatsoever with carbimazole. Although I felt very well with an overactive thyroid. Only knew I'd got it because I lost 2 stone in 3 months!

TickledOnion Thu 17-Jul-14 22:47:07

I had Graves disease after giving birth to DD1. No problems with Carbimazole as far as I remember. My dose was reduced over time and stopped after 6 months with no relapses.

Reredos Thu 17-Jul-14 22:53:31

The weight loss is fab, I'm just worried about what has happened to my health pre-diagnosis.
Can anyone tell me what happens next? I am seeing the doctor on Wednesday and I presume I will be referred to an endocrinologist and that will take a few weeks. Does the dr prescribe the treatment in the interim?

RockinD Fri 18-Jul-14 18:00:28

Your GP should prescribe while you wait to see the endo.

Like many conditions, it seems to be very individual.

One of my work colleagues has Graves and has not had a day off sick in 18 months.

Others will go sick at diagnosis and stay off until remission, however that is achieved.

EmGee Fri 18-Jul-14 21:22:38

I was diagnosed with Graves' disease about 10 years ago - alas, I put weight on NOT lost it and had all sorts of strange symptoms - was starving all the time, very regular BM's, palpitations, eyes out on stalks. I was on carbimazole for the best part of a year - no side effects - and then thyroxine to balance it. Had to have monthly blood tests to check the doses were correct - too much carbimazole and you can become hypo. It's called 'block and replacement'. Basically carbimazole blocks the thyroid from producing thyroxine and then synthetic thyroxin is introduced to balance it all out. (Sorry if I am repeating you what you know already!).

I never had a day off work. A few years after diagnosis, I stopped taking all the medicine and now have an annual blood test to check my levels are normal.

From memory, my GP prescribed me the carbimazole and I was referred to an endo whom I saw henceforth - probably about 6-8 weeks after diagnosis. Regular blood tests are important though so your GP should monitor you until you get your referral.

Reredos Sat 19-Jul-14 16:19:17

It's reassuring to hear some positive stories, thank you. I have had weight loss but I put that down to loss of appetite and I have also been eating smaller portions, not consciously, but just because I am not hungry. I thought that with hyperthyroid you are massively hungry. I suppose everyone is different
What is upsetting me more than anything is the thought of putting weight on; all that I have read says that weight gain is inevitable and is almost impossible to lose.
Can anyone reassure me about that please?

Offa Sat 19-Jul-14 18:45:22

I was a bit unusual in that I had a bad reaction to carbimazole and had a temporary hearing loss because of it - that was a horrible experience. I was prescribed propylthiouracil instead and was fine on that. It is important that you get the treatment and you will feel better for it.

GemmaTeller Sat 19-Jul-14 18:56:25

I have Graves Disease and currently am in the middle of a second flare up.

I've been triaged to Endo on the 2 week rule as my T4 count was over 40.
I'm taking the maximum dose of carbimazole (40mg) and propanalol for the palpitations.

I don't have any side effects to the carbimazole and as its unstable I've been flagged as a 'fast track' at the doctors meaning if I have sore throat etc I get seen the same day.

I lost my appetite both times I had a flare up and lost weight, I may have put back on what I lost but definitely no extra.

Annietheacrobat Sun 20-Jul-14 08:06:47

Reredos you are likely to put on weight but try to remember that is healthy. Your body is effectively in overdrive at the moment and there's only so long it can sustain that.

Back to my sister - she was diagnosed after losing a significant amount of weight. Her weight loss coincided with her starting weight watchers and so it took a while for her to be diagnosed. She became Weight watchers no 1 ambassador in the meantime! She did gain weight post treatment but is nowhere near to her starting weight.

If you do relapse after carbimazole there is always the option of radio-iodine treatment . It sounds pretty dramatic but it is simple and effective. The only downsides are that you have to minimise contact with your children immediately afterwards and there is a risk you may develop hypothyroidism in the long term and so need to take thyroxine.

mrsminiverscharlady Sun 20-Jul-14 09:29:19


mrsminiverscharlady Sun 20-Jul-14 09:34:14

I only put about a quarter of my weight loss back on, and most of that was over Christmas! I asked for a high-ish dose of thyroxine as I have an extremely busy and demanding job and couldn't afford to be hypothyroid even temporarily. Don't know whether this helped, but I also kept a close eye on my weight and didn't find it a problem to lose a few pounds when I noticed the scales tipping a bit too far.

Reredos Tue 22-Jul-14 17:25:21

Hi again,
Saw the doctor again today and my TSH is <0.03,
T4 32.5 and T3 isn't back yet. BP is 103/65 which is much lower than normal.
Do these levels show that I am very hyper or just a bit? I had tests this time last year and I was in the middle of the normal range then. Is that significant?
I now have to wait for a hospital appointment. What questions do I ask the endocrinologist?

GemmaTeller Tue 22-Jul-14 18:32:50

I am scheduled to have an operation for breast cancer, I can't have it until my T4 count comes down to 22 (there's too much risk of a thyroid storm)

Reredos Tue 22-Jul-14 18:34:53

Sorry to hear that Gemma, but what is a thyroid storm?

LemonBreeland Tue 22-Jul-14 18:41:27

I was diagnosed in February after two months of hideous tiredness, a lot of shakiness and weak legs and arms. Carbimazole has not really been a cure all as such, but after feeling that bad any improvement felt wonderful. I have now been on Carbimazole for 5 months and they are struggling to get my does right so I am yo-yoing with weight and symptoms come and go.

Sorry to say the weight will likely go back on once you are on the medication. Sadly mine did, the one positive thing about it.

LemonBreeland Tue 22-Jul-14 18:42:46

A thyroid storm is when you get a full on racing heart, very high temp etc. And is quite dangerous.

Hope your levels come down soon Gemma

Reredos Tue 22-Jul-14 19:21:59

I can't believe that such a devastating illness has just descended out of nowhere. I don't actually have that many symptoms and only went to the Dr because I have had a sore throat and earache for three weeks - which he says is unrelated.
How long does the first appointment take? Taking time off work is going to be really difficult.
I feel so stressed and anxious about it all - apparently they are symptoms but who wouldn't worry about something like this sad

LemonBreeland Tue 22-Jul-14 19:40:40

My first appointment ended up taking 2 months, although that was partly due to a mix up with my GP.

I had loads of symptoms unfortunately. I was lucky to not have the racing heart though.

I have read that anxiety is a symptom. I didn't particularly have that.

Is the GP not giving you carbimazole while you wait for an appointment? My GP gave me carbimazole prescribed by an endocrinologist until my appointment came through.

It is quite scary how you can be normal one minute and then have this potentially serious illness the next.

From my point of view, I was feeling so ill that I wasn't too upset at the time, I was just glad that the blood tests came back with something and it wasn't all in my head.

wannaBe Tue 22-Jul-14 19:50:27

I had an off the scale overactive thyroid about twenty years ago. The symptoms actually happened about two years prior to diagnosis, shakes, heart palpitations, anxiety etc but I put that down to it being my final year in school so generally ignored them all. It wasn't until two years later when my periods stopped and I started to experience hair loss that I went to the dr and was diagnosed after a few months. I took carbimazole for about eighteen months with no side effects other than weight gain and I have never relapsed.

My sister on the other hand developed overactive thyroid after both her which never really settled on medication and as a result she had her thyroid surgically removed last year.

It's worth bearing in mind that hyperthyroidism is often genetic and therefore if you have it other members of your family may well do as well at some point....

LemonBreeland Tue 22-Jul-14 21:02:08

wannaBe I wasn't entirely surprised as my Mum hadit too. Although she had put hers down to her hysterectomy. Although I didn't think it would be my thyroid with the symptoms I had. My Mum was completely buzzing, couldn't sit still, loads of energy. I was so exhausted I look back and wonder how I was getting through the day.

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