just been told have overactive thyroid levels o... - Thyroid UK

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just been told have overactive thyroid levels of 67? loosing hair & mouth ulcers on 3x5mg carbimazole. a day. this normal?

mrs-p profile image
15 Replies

off to hospital tomorrow for blood test to see if tablets messing with blood cells?? bit worried anyone had this? x

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helvella profile image
helvellaAdministrator

What is actually 67?

Doesn't sound very nice - do let us know more and we can try to help.

mrs-p profile image
mrs-p in reply tohelvella

im not too sure what the 67 was. doc said normal level would be 12-20 and mine was 67! have lost a lot of hair. is this normal and does it come back? im getting married this time next year :-(

helvella profile image
helvellaAdministrator in reply tomrs-p

Joy333 (below) gave an excellent reply. If the usual range is 12 to 22, then that would be Free T4. So it is how much thyroxine (also called T4) is in your blood. And that is a lot.

A year is a long time - there is every chance of getting everything well in control by then.

As you say below, thyroid issues can wreck your body. It can also seriously affect your mind - things like anger, anxiety and so on.

Please keep coming back and asking questions - even if it is only having a rant about how you feel. That can help.

Rod

mrs-p profile image
mrs-p

didnt realise quite how much a thyroid problem can reck your body. have 1yr old 2yr old and 15 yr old. could really do with feeling normal again. would anyone recommend taking a multivitamin to help a little?

helvella profile image
helvellaAdministrator in reply tomrs-p

The only bad thing I can think of about taking a multivitamin is that most contain iodine.

When you are already producing so much thyroid hormone, I don't think you should be adding to your dietary iodine.

So read the label and any leaflets VERY carefully before taking.

Rod

Joy333 profile image
Joy333

I can only assume 67 is your t4 levels and if it is you must be feeling so so awful. Has your Gp made a referral to an endo? If they haven't , please request this.

Taking betablockers helps with symptoms, I am on 80mg propranalol which helps the tremors, heart rate etc. until your levels come down.

I'm glad you are getting your bloods done tomorrow, make sure they do a full thyroid function test too (tsh, t3, & t4) I normally phone up my surgery the next day and get my results from the secretary. When you get your results remember to get the reference ranges too. It's also a good idea getting print outs of your blood tests and post results on here where others with knowledge will be able to help you.

You will need careful monitoring in the early stages and as I've recently found out its best to get your levels tested every 4 weeks or so.

Carbimazole in rare circumstances can affect your white blood cell count, but please don't worry I was in a similar situation recently and my WBC were fine. If your WBC is low it is treated by coming off carbimazole.

My heart goes out to you, it must be so hard at the moment especially with the little ones being so young x

mrs-p profile image
mrs-p in reply toJoy333

thank you so much for your reply. was really helpful. all ok i had my bloods checked so will carry on with meds and hopefully feel better soon :-)

Joy333 profile image
Joy333 in reply tomrs-p

So glad all is okay, it can be quite frightening not knowing what's going on. Im fairly new to this too and its been a steep learning curve.

Did you manage to get blood results for thyroid function? X

Bagpuss123 profile image
Bagpuss123

Hi mine was 65. It's very high! I'm on 35mg of carbimazole for last 2 and a half months and levels are slowly coming down. My hair was coming out by the handful before I started the meds but has stopped now. I think it says if you get mouth ulcers while taking carbimazole you should get checked ASAP. Good luck!

snow31 profile image
snow31

Hi. I too had a high levels, mine was in late 57's, diagnosed in April this year. I was originally put on Carbimazole but had a really bad reaction to it with my teeth and gums so changed to Proplthiouracil. Make sure you go to the Hospital as it is important that you have your bloods checked as there are some side effects ie sore throat and mouth ulcers that can effect your WBC as Jpy333 says. If it is the case, they will replace medication. I too had hair loss but it has stopped falling out as much so hopefully yours will as the meds do their job (I sadly didn't have a lot to start with as mine is very thin and fine). I had varying symptons which made life really horrible for a while but some have calmed down and some I still have. I have been on meds now since April and my levels have gone up and down. It does take a while for the meds to get to a normalish level

which is why you need regular monitoring. I am yet to get to that point. Have Endo appt in October but have already had to reduce my dosage due to quick and long drop in my levels!!

The thyroid is part of our body that I am still trying to get my head round how it effects us all in so many ways. It is giving me a lot of problems at moment with me feeling so hot (very clammy and sweaty on exertion and even when I have been trying on wedding dresses - making it not the best experience when it should be, shakes/tremors (taking beta blockers but doesn't always help), heart palpitations (tremors and pounding).

I too am getting married next year, June 28th and I am concerned with all that is now happening.

Hopefully your blood results will be ok but please let us know how you get on.

mrs-p profile image
mrs-p in reply tosnow31

its a bit of a worry with the wedding coming up with hair falling out and i have alot of weight to loose before the wedding. hopefully i will feel better soon so i can excercise a little everyday. i hope we both feel better soon. so much to sort out for weddings need all the energy we can muster (not easy after a day with my 1&2 yr olds). x i get very hot too, its so uncomfortable and im very short tempered/anxious/stressed too. ive always suffered from insomnia-i wonder if my thyroid has been musbehaving on and off for years!? dont know enough about it yet x

glo42 profile image
glo42

I also was overactive and prescribed Carbimazole. I had tremors,not sleeping well, hair loss, anxiety state, palpitations, lethargy and lots of other symptoms that are caused when the thyroid isn't working as it should.

After the Carbimazole 5mg daily for the recommended two year period it was instructed by my Endo that I stop medication in April this year. I have had ongoing thryoid function blood tests in May, July and September and all report to be within the "normal" range.

I feel so much better than I did two years ago, but still have ok/bad days. What I have found useful is that I now listen to my body and rest accordingly. I am 71 and have had a great deal of ongoing stress for the past 20 years. I thought that I was dealing with this, but my thyroid condition is reminding me that I'm really not!

To Mrs-p and Snow31, I send big hugs. You both have a lot to look forward to, with weddings planned for next year. You could both be feeling so much better with the correct medication. Keep focused and take care.

I really do hope that you both will begin to improve very soon. XX

mrs-p profile image
mrs-p in reply toglo42

thank you for your kind words. im so glad i came across this foram. been a little lost with whats happening to me so really good to chat to people going through same thing.

thats great news yours seems to be under control. stress is horrible to live with and im convinced it reaks havic with mind and body. hugs x

boltbag profile image
boltbag

I was diagnosed in April after having what's called a thyroid storm my t4 was at97 I take 100 mg levothyroxine 40 mg of carbimozole but with all the blood tests I am having I also have wich I have only just found out about copd,proximal myopathy celiacs disease ostioparosis and angina of the gut. I am 52 and lost so much weight and hair and teeth I look in the mirror and see a stranger does this get any better plz the docs say it does ????

mrs-p profile image
mrs-p in reply toboltbag

wish i could offer some advice but this is so new to me. maybe start a new thread so everyone sees it?? hugs to you x

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