Hyper to Hypo: Anyone had experience of going... - Thyroid UK

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Hyper to Hypo

Roderick_0707 profile image
5 Replies

Anyone had experience of going from hyper to hypo? what happened to meds etc? and advice you were given?

I am concerned I will be going hypo in next few weeks and have received no guidance. For past 2 weeks my Carbimazole has been at 60mg per day and now down to 40mg daily. My free T4 has come down to 15 from 44, which is a fall of nearly 30 in 2 weeks.

I was on 40mg a few weeks ago but stopped due to illness and at that time I had dropped from 43 to 28 in 1 week, a drop of 15.

Based on maths alone I could be hypo in 1 week let alone 4 weeks!

Hence my concern now as have been told bloods in 4 weeks and stay on 40mg.

Any advice and information would be very gratefully received, many thanks

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Roderick_0707 profile image
Roderick_0707
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Clutter profile image
Clutter

Roderick_0707,

Although 60mg saw a dramatic fall in T4 level reducing dose to 40mg will slow down the rate of reduction. If at your blood test in 4 weeks the T4 has fallen lower your 40mg dose will be reduced.

Fruitandnutcase profile image
Fruitandnutcase

When I was first diagnosed with Graves Disease in November 2012 I was put on 20mcg carb a day.

The blood test I had after four weeks showed almost no change and I was informed by post that I should double the amount of carbimazole I was taking.

Unfortunately for the next two months I was not tested and by the time I actually saw an endo I was very hypo.

My hospital treats by block and replace so when I finally saw my endo he said to start taking the Levo he was about to prescribe right away and to stop the carb for 'a few days' how scientific can you get eh!

Anyway between the endo and myself it was decided that I would I stop the carbimazole for five days and I started on 50mcg levithyroxine daily straight away.

By the time I saw a different endo at my next appointment (four / five weeks later) my hair was falling out in handfuls, my fingernails were disintegrating and my fingers hurt so much I could barely grip things.

When I told the endo about that she said it was because I had gone from being extremely hyper to being extremely hypo in such a short time, it wasn't surprising I felt so awful and that once I was stabilised it would all sort itself out which it pretty much did.

Gradually I increased my thyroxine until I was taking 40mcg carbimazole plus 75/100mcg levothyroxine on alternating days then came the great day when my bloods reached a level they were satisfied with and all my meds were stopped. All in all my treatment took a year and I've been in remission since November 2013

Roderick_0707 profile image
Roderick_0707 in reply to Fruitandnutcase

Thanks Fruitandnutcase

wow thanks for such a real life story, always great to get replies but someones story is just so heartfelt. I was on 40mg for 1 week and saw the effects! so I am not paranoid but very wary of the next few weeks and hope Clutter has it right after 4 weeks time. I am self-employed and this is our tourist season, I am on the only one here doing my job so no room for complacency as Easter is looming which means long days. 2 weeks ago would have never made it, now feeling ok and want it to stay that way!

May your remission enjoy more years to come.

Fruitandnutcase profile image
Fruitandnutcase in reply to Roderick_0707

When I started on carbimazole my pharmacist came out especially to tell me to be sure and take vitamin c along with the carbimazole. I was so stunned by it all I didn't even think to ask why but I took it anyway. I took 1000mcg slow release vitamin C. I also made sure my vitamin D and B12 were right up near the top of their ranges - well sometimes my B12 went over but that was ok. Checked my ferritin and folates were good well up too.

My endo had my B12 checked, it was within range but pretty low and I've got a family history of pernicious anaemia so I bought Jarrod's sublingual cobalamin B12 and that really boosted things, used a vitamin D spray too. In the end rather than argue my case with my doctors (and lose) I started using a home fingerprick blood test from Blue Horizons. So much easier. I now use the Thyroid 11 wth gives me pretty much everything I want tested. I went totally gluten freeto reduce my antibodies and it has worked so at the moment I test every three months or so and I have been watching my thyroid antibodies come down over the year that I've been dong that.

I know exactly where you are coming from about work. When I was first diagnosed I had a load of work booked for the New Year and as the time came closer I lost confidence and cancelled it all in case I wasn't able to do it. As it was by April I was back to work with no problem. Be kind to yourself, try and rest as much as you can when you're not working and eat well too.

If you've noticed a difference since you started taking the carb then that's good and long may it last.

Roderick_0707 profile image
Roderick_0707 in reply to Fruitandnutcase

Thanks again Fruitandnutcase and yes I am feeling the benefits from taking 60mg carbimazole which they put me on due to low white blood cells count.

After 1 week on the 40mg I crashed out bodily wise with lots of symptoms and slept for 36hrs with fever/flu like heat. Missed 3 days of 40mg and then another bloods which showed free T3 had shot up to over 43 and free T4 to 44, hence the 60mg.

I am taking Vitamin C and enjoy beef liver for the B's and read with interest your blood testing, I am also on a FB magnesium site where they help with what they describe as the 'Root cause protocol' which I am now following. So good luck with your methods the more people have success with natural vitamin and mineral ways the better. The rush to cut and destroy is a worrying trend when there might be a natural underlying situation maybe not causing but certainly not helping the thyroid.

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