What is minimum time can be on carbimazole if saying I'm in normal range?

[Binkynoo]

Not having a good time on carbinmozole at all , on since jan my family day Iv changed on 5mg hair loss, fatigue , feel yukky most of time , to top it off now got water infection found out today after i asked to be checked!! i i i wake make me worse and heart races what is going on cant sleep ,came off propononol over a week ago ,that wasnt helping having nightmares because they said the carbimazole had kicked in , went A&E i felt shivering warm shaky nervous feeking they checked me poss they put it down to panick attack no one even checked my waters & gave me some diazepam first night good sleep ever , but not long term plan seeing endo next week want answers feel worse now then did when first went into docs diagnosed with it help

[shaws Administrator]

Someone who has hyperthyroidism will comment. I do know that some have been made hypothyroid due to some treatments but this is an excerpt by Dr Toft who was President of the British Thyroid Association, for your information:-

5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

[Hidden]

Hi there

OK, I think you are typing on a smart phone so it's a bit hard to follow your post but I had Graves disease, which is an autoimmune disease where the antibodies attack thyroid tissue, and sometimes eye muscles and sometimes shins (they don't know why). So the first thing to establish is why are you on carbimzole and what is your diagnosis?

Graves disease is diagnosed by the presence of TRAB (sometimes called TSI) antibodies, if you do not have TRAB, you do not have Graves. Some people have transient hyPERthyroidism (overactive thyroid) - pregnancy can trigger it, extreme stress etc. It comes and it goes ... so knowing what you've got is important.

So in your shoes I'd ring the doctor or hospital treating you and ask for print outs of all tests they've done for you including copies of any antibodies (specifically TRAB, TPO and TgAb) along with their reference ranges as well as your thyroid function test - these will be TSH, FT4 and FT3 - we need to know where were BEFORE you started Carbimazole (CBZ) and where you are now.

Carbimazole is an antithyroid drug (ATD) - this means it blocks your thyroid hormones. If you have Graves disease the feedback loop that automatically controls your thyroid has done on the blink (like your thermostat controls the boiler on the heating system in your house). As your thyroid (the boiler) is no longer listening to the TSH (the thermostat) your thyroid continues to spit out hormones even though your brain signal (the TSH) is telling it not to. So they give you an ATD like CBZ to shut down production. The idea is they only give you enough to bring you into normal ranges. But the sensation of falling thyroid levels feels horrendous and what you have to remember is the real issue is your immune system, and the antibodies, so if your antibodies are still very high, then the Graves disease is active but the drugs are sitting like a wet blanket on the top. Or to use another analogy, it's a bit like being drunk and using coffee to sober yourself up, you are still drunk underneath, you just feel a bit more sober .... if that makes sense?

Propanolol is used to protect the heart in serious cases of overactivity and it also slows down the conversion of thyroid hormone T4 into thyroid hormone T3, the most potent kind. However, doctors often overshoot on the treatment - sending a person from overactivity into underactivity in a short period of time and it feels dreadful. Propranolol needs to be carefully titrated and it can cause nightmares.

This sledgehammer to crack a nut approach is the reason why I'm harping on about getting your results. I'm currently on my fourth endo, so without wishing to scare you, an endocrinologist who REALLY knows what they are doing is hard to find, most are diabetes speciaists not thyroid and even thyroid specialists can be rather brusque, unsympathetic and not very interested in the patient, only the print out of the blood tests. You need a good endo who will test you about every four weeks and LISTEN to how you are feeling.

Carbimazole is also highly liver toxic so any flu like symptoms, fever etc straight to A&E. It is possible to stay on a very low dose CBZ for a long time (many years) if it controls the symptoms ... a true remission with Graves is rare. That's why we need to know if it is Graves. But some people will take 2.5mg of CBZ once a week for years ....

Also, as Graves is chararacterised by elevated TRAB it is not good practice to dose the patient according to the TSH. TRAB = TSH-Receptor antibodies, so they block the TSH, so that's why Graves patients have a suppressed TSH. The TSH can remain suppressed even after the patient's other thyroid levels come down into normal ranges and the patient feels better Incompetent doctors will keep dosing more CBZ to get the TSH up, making the patient feel very unwell and sending them HYPO into the bargain. The TSH is a red herring in Graves - it says something about antibody action and how active the Graves is, but it's not useful for dosing levothyroxine or carbimazole.

Finally, overactivity means your whole body is going too fast - racing thoughts, sweating, fast heart, respiration, your digestion will be going fast, you'll be poo-ing a lot, hungry etc. Because your body is using nutrients up too fast, and as your gut will be passing nutrients through your gut too fast before they are properly absorbed, you can become deficient in key vits, minerals and elecotrolytes that will make you feel like total crap, even if everything else is fine thyroid wise.

So you need your doctor to check:

Your iron levels - you need a full iron panel inc serum iron, ferritin, transferrin, TIBC and saturation %

B12 - these need to be over 800

Vitamin D - needs to be about 80

Sodium, potassium, magnesium and calcium - all need to optimal

Wouldn't hurt to check your parathyroid hormone (PTH) - this controls calcium in the body

Folate

Get the results of these and start posting them here. I recommend really getting your head around your illness and putting your hands on the steering wheel of your own care. Take a notebook to consultations, write down your questions and write down the answers. Take a friend with you.

But number one priority is checking they have you diagnosed right - you'd be surprised! Once we know that we can then give you a steer on what's next.

Hang in there,

Best wishes

Rebecca

x

[Binkynoo in reply to Hidden]

Thankyou so much Girl Scout. Currently feel shocking to top it off with a water infection can this be like dynamite felt like this 2 weeks no wonder I had to tell them to check my water works !!! I haven't slept feel like I'm plugged into a socket at the min !! On antibiotics for water infection took those tablets this morn then gotta take my carbimazole at lunch , then more antibiotics , I'm desperate for sleep and it's getting me down was given some diazepam to relax me night are worse thing I took one last night and just still not sleep I'm fed up with tablets just want to be back to my nice natural relaxed self . What can I do about this constant nervous shaky feeling arrrrrrgh could cry I'm going on holiday in 2 weeks scaring myself with things like il stop breathing in my sleep , im checking thete is a hospital near by my hotel what's happened to me . Iv got endo 6th may and I'm going to get my bloods done this week should I ring and makesure they do full check on everything. So ill today could book myself on hospital .

[Hidden in reply to Binkynoo]

Hi yes it sounds like you need a blood test asap. Can you go in earlier? Make sure they do a full thyroid panel and ask about those antibodies. Propranolol (betablocker) can help with the shakes. Going gluten free and avoiding processed foods and too many stimulants (like diet coke and coffee) can help - tricky when you are tired I know, ditto sugar and stuff that stresses your system.

I had that shaking feeling, it's horrendous, like 'shaking on the inside' ....

Alas, there are no quick fixes with Graves - that's why we need to know what exactly you've got. But doing everything you can to calm yourself down, and take care of yourself, reduce stress will help. Lemonbalm tea can help, rescue remedy, a nice soak in a bath with lots of epsom salts ...

Rebecca

x

[Binkynoo in reply to Hidden]

Hi Girl Scout , I'm going up her my bloods done today , I often get pains on shins ,have recently , just these terrible shakes with mudvle pain around ribcage can't sleep it's awful not sure wether to go back on proponol to help with tremors Iv not stopped all night my legs are shaking. I could sit & cry Iv got up be strong Iv got a little boy bless I don't like him see me like , going to canaries next week wanna feel good nice like used to may only option prop 2 x 4o proponolol & carb & diazepam to get through holiday

[Hidden in reply to Binkynoo]

Hi there

It's going to take several years before you are fully well again, my doctor told me three years on average from start to finish. Graves is a long haul. If you are really shaking then you might need a dose increase, but I shook all the way through, even when very hyPO and on propranolol etc - like I've mentioned the inflammation in your thyroid can cause lots of symptoms even if your blood tests are OK. I really wouldn't take valium if you can possibly avoid it as its very, very habit forming and really won't make things better. I understand you want to enjoy your holiday but it's more important to be well right now, you are very, very poorly and you need to take care of yourself. Let us know when you get your results.

Rebecca

[Popeye27 in reply to Binkynoo]

I hope you have the correct insurance for your holiday. And you've declared all these symptoms it's NOT worth the risk...I you haven't they won't pay you a penny...I know it happened to my friend........I had to cancel my holiday to Malta...because of my Graves Disease...I had a wonderful restful holiday at Elvendon Center Parcs instead....never going abroad again...The UK is beautiful I'd rather be poorly here than aboard....

xxx big hugs xxx

[Popeye27 in reply to Binkynoo]

Be very careful with antibiotics ....they sent me into a Graves Thyroid Storm.....because my thyroid meds stopped working.....don't want to scare you but ....

xxx big hugs xxx

[tilly83 in reply to Hidden]

Hi Rebecca, what a brilliant reply.....agree with all you say...x

[Dora-33 in reply to Hidden]

Thank you Rebecca for this reply it realy helped me, i have a few questions you may be able to help me with. Im also hyperthyroid

[Hidden in reply to Dora-33]

Hey, you're welcome. Fire away, although you might want to start your own thread or point me at your thread so that we don't muddle up Binky with you .... x

[Popeye27 in reply to Hidden]

Excellent replies GirlScout...applaud you.....I have Graves Disease and Graves Eye Disease......my idiotic doctors pushed me into my thyroid removal.....which was, I've learnt though researching all my ailments, totally unnecessary.......I have learnt that carbimozole can help to achieve remission successfully by being taken for several years......and once in remission 'ADD BACK ' therapy of about 2.5 dose can help to keep people in remission...and STAY in remission for many many years..UK doctors take us off carbimozole far too soon...and have no idea how to administer it...TSH, FT4 and FT3 bloods should be taking on a regular basic..........TSH alone is useless......I just wish I had known that before I was pushed onto the horrible roller coaster of HYPOthyroidism.....I am much much worse now...and my antibodies are STILL extremely high...my Endo seems to think I am cured of Graves Disease and ignores this....even though my eye are getting worse all the time....my eye surgeon STILL can't operate because of this......after 3 years of suffering......

xxx big hugs xxx

[Binkynoo]

Also just thinking , could the diazepam be not helping , I'm just thinking of something for holiday to relax me to sleep ? I came off proponolol because they said I could & I was having nightmares on them still am in a way I think withdrawal symptoms !!! I don't understand why I suddenly nod off seem to wake up in a panic with heart racing , I'm worried about my heart had to traces at A&E over last week They say fine , i want to know if it's carbimazole causing it or just sumptoms have returned until I check my bloods this week or is it withdrawal from proponolol or diazepam , think I will buy one of those pulse monitors from boots keep an eye on things ? Do you think x am I just having panic Attacks major

[Hidden in reply to Binkynoo]

No it's not panic attacks, it's probably T3 spikes - they probably need to give your thyroid a scan, the INFLAMMATION in your thyroid can drive 70% of your symptoms regardless of your blood results. If your thyroid is very inflamed and fibrosed then CBZ etc might not really be able to control things. I had this, by the time I was diagnosed my thyroid was very burnt out and shrivelled and very, very 'angry' - I had a hideous time of it. You need to have faith in your doctor .....

Diazepam is really bad news, they are highly, highly addictive, I'd avoid those if you can.

Rebecca

[Binkynoo in reply to Hidden]

Iv just rang specialist they say I'm in normal range!! Iv got to gp about shakes and tremors il try better lifestyle fed up of tablets x it could be my water infection not helping scared of being back on proponol cause have to wean off that to dont you. What worked for you to sleep help shaky nervous feeling

[Hidden in reply to Binkynoo]

Hi

Like I said 70% of what you are feeling has got nothing to do with your blood levels but the iNFLAMMATION in your thyroid. Also being in 'normal' range is no good, it's where in the range are you, the bottom, the middle or the top?

And you have GRAVES DISEASE we think, so this is an autoimmune disease, the thyroid is the victim in all this, not the culprit, the culprit is your immune system. So if your antibodies are currently very elevated then they will be attacking your thyroid very aggressively, this will make you feel ill even with the carbimazole controlling the hormone levels - your whole system is on high alert, your body is attacking itself, it's a very serious illness.

You really need to learn about this, - there's a fairly basic book called 'Understanding Thyroid Disorders' by Anthony Toft, you can get it in chemists and WH Smith etc - this would give you a "Thyroid 101" place to start.

The shakes are due to the fact that you are VERY ILL with a drug sitting on the top like a wet blanket holding your levels down, it's not the same as being someone with a normal thyroid and normal levels - it's like a false normal because your system is raging away underneath. This is why you need a doctor who understands and you need a proper diagnosis and need to know which antibodies you've tested positive for.

What were your thyroid levels - get the numbers with reference ranges - try and get everything they've got so we can see how you've progressed.

Hold tight, the water infection won't be helping ...

Rebecca

x

[Binkynoo]

Hi still got really bad shakes 2 weeks now last nite worst night should I take a proponol this morning , I'm going for thyroid bloods Monthly check If this is anxiety it's awful only started shakes since on medication carbimazole & proponolol came off prop then had diazepam it's got worse shaking , it must be my andrenalin anyway experience this my insides tremor x

[Popeye27 in reply to Binkynoo]

Binkynoo....I've just been reading your posts.....I am so sorry about your treatment at your doctors....I have been though all these symptoms ....and had my thyroid removed a year ago....please do lots of reseach...as UK doctors haven't a clue ...they just treat the thyroid.....not the antibodies....I have proof of this....I do hope you are feeling much better now...I am praying for you....

xxx big hugs xxx

[Lisa254]

Hi binkynoo I am new to this and have been diagnosed with mild autoimmune hyperthyroidism 7 months ago, for the last 3 months have experienced similar to you I have been so ill but thyroid levels are normal though one doctor said I have thyroiditis. I am going crazy as I keep telling the doctors what’s wrong with my immune system and they do not know how to handle this. I realise your post is quite a few years old so just wondered what you did and how you are doing now?

[Binkynoo in reply to Lisa254]

Hi there Lisa254

I am or have been normal now for 2.5 -3 years I believe. I started feeling not right and knew I was being over medicated I knew I was back in range,I had put on weight due to being slowed down, but my consultant said bloods ok apologised cos said I was right.I just had to relax eat well and get vitamins d and iron levels which I know soon as hit low levels I'm sure I go a bit crazy and Vit bs are important cos effects the nervous system hence feeling anxiety and panicky. I at the moment having a flutter where I'm overworked and need some relax time out of work and plenty of good sleep so a week off should do me good eating well porridge &honey ,herbal night teas , fish and veg it's hard but I need to get back good habits too I know I heal this way. get all your levels checked vitamins wise too. I want yo increase top lrvels of vit d to boost immunity . Hope this helps let me know how you are getting on binkynoo x

[Lisa254]

I am so glad you have recovered, and well done for healing yourself how long do you think you was ill for? It’s really encouraging to hear you haven’t relapsed and it’s been 2.5/3 years. I have tried and researched quite a few things ie nutritionist acupuncture ginger tea yoga (decreasing carb dosage which I told my doc I was doing) I have been off work for 3 months now I do feel better but I’m not back to normal and going back to work for a couple of hours throughout the week but I’m still up and down. I have decided to go private and get a second opinion about my carb level as I feel fine when I wake up I then take the carbimazole and I feel awful for about 4-5 hours also I have found that my endo is a diabetes specialist and want to see a thyroid specialist (if they exist!!) ha thanks for ur reply it has given me light at the end of this horrible tunnel!! 😊