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overactive thyroid

(17 Posts)
Twinbhoys Fri 23-Aug-19 19:01:28

after 18 months of blood tests, many G.P appointments and other hospital doctors, I have been diagnosed with overactive thyroid. I am unusual as most of my symptoms suggest underactive but my bloods say overactive, T4 is 15.7 and TSH is <0.01 I have been started on carbimazole 20mg twice daily, endocrinologist said he would have preferred me to go straight to radioactive iodine but due to have 2 young children and being a single parent it just isn't possible for me at this time, I suppose I'm asking what peoples experience has been on carbimazole and also i have heard and read some horror stories of the side effects, which has rather upset me and causes me complete fear, would love if anyone could share good or bad experiences

AbuelitaAyahuasca Mon 26-Aug-19 12:50:10

Hi there, I’ve been on and off carbimazole for a few years now. Radioactive iodine didn’t work for me, fortunately thyroid behaving itself for now. It was lithium-induced Graves’ disease, they think. Have you had a scan to see what’s going on?

Had problems (sort of psychologically) sticking with the carbimazole but it really worked and I got back to normal. Obviously they keep a close eye on it in case it comes back or goes under active but mostly managed by GP now. Good luck!

Twinbhoys Mon 26-Aug-19 14:39:26

Hi AbuelitaAyahuasca thanks for replying, I have not had any scans I'm not due to see the consultant again for 6 months, I've just to see G.P if any problems between now and then. I have completed my 1st week on carbimazole and fingers crossed no side effects yet but again thanks

NaToth Tue 27-Aug-19 12:40:11

OP, what are the ranges for your test results and have you had FT3 tested?

You can only be hyperthyroid if both FT4 and FT3 are above the reference range. The 'standard' range for FT4 is 12-22 and where I live is 9-26, so it varies from place to place, but I am concerned that yours might be within the reference range. I'm just afraid that you may be being treated on the basis of your TSH, rather than your thyroid hormone levels.

AbuelitaAyahuasca Tue 27-Aug-19 13:29:30

That’s a really good point, when my thyroid went wrong last time it started with T3 toxicosis and rapidly progressed, T4 was just within range and I was finally producing some TSH (although not enough). I don’t know if this is just a Graves thing?

Twinbhoys Tue 27-Aug-19 14:37:11

I'm unsure of my T3 but my FT4 is 15.7 and TSH <0.01 My G.P wasn't keen on starting me on medication but to keep testing my bloods every couple of months but I was seen by endocinologist and he started me on Carbimazole, I'm due to see G.P and get bloods done again in 4 weeks

Twinbhoys Wed 28-Aug-19 00:11:33

NaToth I have found out since my earlier reply that where i stay they don't routinely test T3 levels but it is something i will bring out with my G.P at next appointment, as only the G.P can request those tests

NaToth Wed 28-Aug-19 14:05:37

You should have two figures in brackets after your actual results. That's the reference range. They can only say your thyroid is overactive if your TSH is below the range AND BOTH FT4 AND FT3 are above the range.

I'm horrified that anyone is putting you on anti-thyroid meds and talking about RAI if they haven't checked your FT3.

HostessTrolley Fri 30-Aug-19 20:14:20

How are you getting on with carbamazepine @Twinbhoys ?

Just asking because I’m starting on it tomorrow- plus beta blockers. Had a call from gp an hour ago saying my thyroid levels are ‘rather high’ and tsh low so they wanted me to start on meds pending a thyroid scan and endocrinologist referral. I know nothing so am looking for any info that might help x

Twinbhoys Fri 30-Aug-19 20:53:24

HostessTrolley I'm on day 11 of treatment of 20mg x 2 daily and so far I don't appear to have any side effect except extreme tiredness but unsure if that is even a side effect as I suffer from chronic fatigue also, I don't know a lot about thyroid disease I am just starting out on this journey too. If you dont mind me asking where you are based I'm in the U.K and as far as I can make out they don't test our T3 levels but elsewhere they do, sorry for rambling on, actually something else I have noticed is I am very very emotional!

HostessTrolley Fri 30-Aug-19 21:38:09

I’m in Kent.

Usually getting anything done at our GP takes an age, so to get a call from a doctor at nearly 7pm on a Friday, saying the tablets will be at the chemist in the morning and to start them ASAP is a bit scary - he didn’t give me any numbers.

I’m 47, never normally ill but am overweight. I started losing hair, irregular periods, not coping with the heat, and struggling to sleep over the last few months but assumed it was the start of the menopause. But then started losing weight (over a stone in 4 weeks), no energy, gradually increasing heart rate (Fitbit), just feeling shaky and meh. Then felt a lump in my neck so went to the gp, who has blood tests done.

I’m glad they can give me something to treat it as I’m fed up of feeling rubbish, but am stressing about what’s causing it. No family history of thyroid issues

So glad to hear that things are good with you x

Willow45 Sun 01-Sep-19 17:45:08

I 'm on the 4th week of carbimazole (2 x 20mg) and beta blockers. Plus vit d supplements. My hand tremors have nearly gone, I'm sleeping better, no longer get migraines, am more calm and less anxious. And the best bit, itchiness has gone and i can now walk upstairs without aches and pains. I am starting to feel more 'me' after a year of thinking i am losing my mind. I thought it was 'just' menopausal. It has been an awful year. The relief when the doctor said it's no wonder you have been feeling so ill, I could have kissed her.

But, it's all come at a cost. Apparently i haven't been very nice this last year (honestly, I didn't know whether I was coming or going most of the time). So my long term partner said he is leaving me and has put an offer on a flat. I am just hoping i can get stronger mentally and physically to get through yet more awful. The medical service in North Yorkshire is fantastic and have looked after me very well so far.

Life can be a bit rubbish at times. But at least Graves isn't life threatening. Provided you get medication!

AbuelitaAyahuasca Mon 02-Sep-19 11:50:50

I was just going to say it is potentially fatal (my mum didn’t know she had it and, left untreated for some time, it caused atrial fibrillation which led to emboli then a series of strokes - luckily she survived). So it’s not to be taken lightly (not that anyone was)!

Oh the itchiness though, I forgot about that!

Twinbhoys Mon 02-Sep-19 18:21:49

AbuelitaAyahuasca Yes my own mum has an underactive thyroid but had a thyroid storm which has caused AF She does not keep well at all now due to it, I'm now on week 3 of carbimazole and the itching just started today I honestly don't think i can cope with it!! Can anyone tell me how long it lasted I have already caused a bruise with the scratching I had to go buy cotton gloves for night time (not that I think they'll help) but my nail are as short as they'll go

Twinbhoys Mon 02-Sep-19 18:30:00

@Willow45 I feel you, my poor kids are only 5 and actually said i've been a horrible mum which has broke my heart! If I'm not shouting and being crabbit I'm crying, it has been horrendous for them and me, I'm just hoping my mood improves soon. I'm in Scotland and as good as my doctor is it's just your luck if you can see the same G.P every time unless you are willing to wait weeks but usually I just need to see any doctor, My G.P has now said he will see each time so hopefully things may improve. Do you know if your T3 levels get checked as I know mine don't and someone up thread said they should be checked, I have appointment for end of this month to discuss things

Willow45 Mon 02-Sep-19 20:05:07

@twinbhoys, yes, I will get T3,T4 and TSH checked at my next blood test, which is in a month, then have another one a month after that and then consultant appointment. It's all very very organised, I honestly can't fault my treatment. I have so many drugs I've ended up paying for the annual prescription thing.

The crying is bad isn't it? I finally went off work after i just totally fell apart after getting lost trying to find a hotel where some training was taking place. I sat down in the middle of Leeds just crying. Two days later i was urgently summoned to the doctors and told Graves, and have these drugs. What a relief. Been off work 4 weeks now, feel a lot better, all these seemingly unconnected symptoms have been explained by Graves. I feel almost myself again. Back to work in a week. I've also been going to the gym every day to build up my lost muscles and feel tons better for it.

Give it a few more weeks before feeling better. Although it's a bit more difficult to explain your moodiness with young kids, so difficult. But you will feel like yourself soon, promise.

Willow45 Thu 17-Oct-19 19:24:29

@twinbhoys just a follow up for reassurance. Results of Blood tests last week show a really good response, so I can now go down to 5 mg a day (from 40 originally!) Feeling loads better, best I've felt in years in fact. Every symptom has now gone, lost 3.5 stone through changing diet and gym. It's been a tough wake up call to sort my health out. I hope you are starting to feel the benefits of medication. Good luck.

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