Graves’. Carbimazole over corrected. Low T4 now. Is it ok to take a short break from Carbimazole before restarting lower dose?

[MyNameIsAugust]

I was diagnosed with Graves’ disease earlier this year in the spring. It responded quickly to Carbimazole. My dose has been tweaked quite a few times. Latest dose was 10mg twice a day. After being on that dose for a month now my latest bloods show my T4 is too low (7.4). My TSH was non-existent before but now it’s in the 20s. My GP gave me the results over the phone so I don’t have any further details. I’ve been told to switch to 10mg once a day. Is it ok to skip meds for two days in an effort to get back up towards normal range before starting the 10mg once a day? I’m feeling quite drained. Carbimazole also gives me awful muscle cramps in my legs, feet, chest, shoulders etc. so I don’t like taking it. And I’m lactose intolerant so it upsets my tummy badly too - I take lactase enzyme with it but it doesn’t always help. So I’d be happy to have a break from Carbim, even for a couple of days, since my hormones are low now. Just worried that stopping/restarting might do more harm than good in the long run. Can anyone offer any tips or advice? Thanks.

[PurpleNails Administrator]

Hello welcome to the forum.

How frequently are you monitored? 6 weekly is standard.

How long did go take for your TSH to get that high. what were your levels at diagnosis?

How was your Graves confirmed? Positive Trab or TSI & what were the result?

It is vital you confirm diagnosis as it is possible you do not have Graves. Doctors don’t always do this step. Treat all low TSH as Graves. Too often focusing on rising the TSH & they have allowed it to rise far too high & FT4 too low.

Autoimmune thyroiditis (hashimotos) can cause transient hyper but ultimately your levels will become under active. Carbimazole is wrong treatment & will drive down levels too fast.

Unfortunately carbimazole doesn’t reduce the existing or current thyroid levels in your system. It works by reducing production of new hormone. Which means if you stopped taking medication today and your thyroid did start ‘over producing’ new hormones again, in about 6 - 8 weeks your levels will be unexpected different, even if you resumed carbimazole. Consistency, with regular & appropriate adjustments when required is key.

Important to test. TSH, FT4. FT3. (FT3 not always tested) Folate, ferritin, B12, vitamin D. TPO, TG Antibodies & TSI Trab if Graves suspected.

Does all carbimazole contain lactose in ingredients? Are there any brands which doesn’t. PTU Propylthiouracil is an alternative anti thyroid. It’s a older drug, chemically very different. Some doctors are wary of it as carbimazole is standard.

[asiatic]

Purple nails has given you a good summary. Assuming you really do have Graves ( diagnosed by positive TRab or TSI ) you might be interested to learn that like many others I had a strong response to Carbimazole requiring downward adjustments 20/15/10/5 mg. over 3 months. It was then stopped for a few weeks but had to be restarted. This seesawing worsened my TED. With Graves I have learned SLOW AND STEADY is the best approach. Maybe over the coming months reduce/ test / adjust as necessary. If this isn't working for you there are other options PTU or Block and Replace. Come back to the forum for advice. Unfortunately finding what is best for you can't be rushed but with perseverance and knowledge you can feel well again. (I have been on Block and Replace for 5 years and do well on it.)

[humanbean]

I've never been hyper. But I have read on this forum that anti-thyroid drugs shouldn't be taken in one big lump. Instead the dose should be split so it can be taken 2 - 4 times a day.

Is there any way that your 10mg dose can be cut in half and taken twice a day? or cut into four? I doubt that absolute precision would be necessary, although prescribing smaller doses (if they exist) would be helpful. In other words if a 5mg tablet exists then prescribing 2 per day would be helpful for you rather than prescribing 1 x 10mg per day.

[PurpleNails Administrator in reply to humanbean]

Poster was initially on 2x daily dose. To begin with, the more frequent doses help keeps better & more even control of reducing down production of new hormone.

Once levels are in range (hopefully, before they go below range) this should be reduced. Lowering the dose and a single daily dose is all that is required.

Currently their TSH is 20 & FT4 7.4 so a little less effective control is exactly what’s needed.

[MyNameIsAugust]

Thank you for your replies. Yes, they did a couple of antibody tests and said one of them was definitive for Graves', that I definitely have it, that was back in March or April. I first saw an endocrinologist in May. They told me I should be tested every two months. My GP however has been testing me much more frequently. My TSH stayed suppressed until this week when it had shot up. I feel like I have had the input of too many doctors, and they weren't working in unison so meds were being adjusted based on older blood tests and I was getting differing advice from endocrin compared to my GP. My dose has been adjusted upwards and downwards so it's not been a steady reduction. In the end I followed my instinct last month and I didn't take the upped dose of 15mg twice a day that the endocrinologist had prescribed - I missed his call and he left a voicemail with his advice based on an older blood test. I thought it was too much so I took 10mg twice a day... glad I did. My GP called with my results on Thursday to say my T4 was low and my TSH was high (the tests were only done the day before, so don't think any other results were available yet). She said to switch to 10mg once a day. I didn't take any yesterday and I'm toying with not taking any today but restarting 10mg tomorrow. I've been feeling very drained and I get the most awful cramps/muscle spasms. The cramps have been happening since I started Carbimazole. If I stretch my muscles for anything they spasm. Arms, legs, shoulders, feet are one thing, but when it happens across my chest it's more scary. And it seems to be getting gradually worse with time. Hopefully now that I am going to a lower dose again the spasms will ease. I've asked my pharmacist and they say that carbimazole only comes with lactose. I've been taking the 20mg tablets and splitting them in half because that way I get less lactose.

[PurpleNails Administrator in reply to MyNameIsAugust]

They do produce a 5, 10, 15 (which is newer) & 20. But I split mine up too. I take 7.5mg. So 3/4 of a 10 or halving a 5.

Usually lack of input is an issue. Too much adjustment especially on out of date information is ridiculous. Track you own results and advocate for yourself. Obtain printout with ranges (lab ranges vary so important) for every test. Share on here & we can help guide you.

Do you find smaller doses better because of the lactose content? Then perhaps smaller doses are a better for you. Taking 2.5mg 6 hourly would total 10mg per day.

The muscle problems could be Graves related not solely due to medication.

[MyNameIsAugust in reply to PurpleNails]

Here in Ireland the only strengths available (according to my pharmacist) are 5mg and 20mg. I think they are physically the same size, although I've not measured them next to each other. The 20mg ones are pink on the outside, when you split them you can see what I assume is the active ingredient in a white core. I've noticed this core isn't always centred in the pill. So some of my "half" pills will be more than 10mg and some will be less. I'd be concerned about splitting them any further. They also tend to crumble when I do it myself. My pharmacist does a better job. Yes, I've come to realise that I really need to take control/charge of my care myself so I can properly advocate for myself. I've made it clear to my GP that I do not want my meds adjusted again until immediately after blood tests. I saw a different GP (not my usual one) a couple of months ago and he is usually a good doctor, old school, and when I told him about my symptoms (cramps, constipation etc.) he figured I had gone hypo and told me to pull back on the meds, my blood test was a week later and although it was still within normal it had increased from the previous test. When endocrinology saw the increased hormone level they prescribed the higher dose of carbim - they were unaware that I had pulled back on my meds based on my GPs suspicion. It all felt wrong and unscientific to me but I went along with it, except I didn't take the full amount they prescribed. Now I know I have to follow my instinct more and to make sure my meds are only adjusted immediately after blood test results. I'll have to start keeping my own records. Next time I see my GP I'll ask for printouts and stick them into a journal. Thanks for your help.

[PurpleNails Administrator in reply to MyNameIsAugust]

I think the pink coated / white core is unique to the particular brand you’ve been given.

I’m currently given 10 & 5 to alternate daily, but as I forget which one to start on a Monday (that’s when my pill organiser is complete) I’m happier taking same amount daily.

I’ve had many different brands to date and found they both come in all white or all pale pink. Some in blister packs & some in a bottle.

I can’t say if it is different in Ireland & if there are genuine limits to what can be sourced but here the pharmacist can choose to provide most cost effective medication. Some independent chemists are more helpful than others.

keeping a diary excellent idea be sure to note down any new of changing symptoms, all medications and supplements you take. Make notes of things you plan to discuss with your doctor and get into habit of viewing your test results and learning how to understand them to compare your progress.

[pennyannie]

Hello " August " and welcome to the forum :

If your antibodies are still high, raging and over range and positive your immune system is still active and your levels could take off again.

Your levels now do look too low, and understand your concern so just try and listen to your body and if any symptoms start to reappear take anti thyroid medication and it will start blocking your levels rising any further.

Whilst your metabolism has been running fast, fast, quick quick slow, there's the additional issue of being able to extract your key strength, vital nutrients through your food and it is most important that we keep ourselves strong during this phase of the disease, and would suggest you keep an eye on your levels of ferritin, folate, B12 and vitamin D as these need to be maintained at optimal levels.

As previously mentioned there is an alternative to Carbimzole so maybe this might be an option worth considering ?

It is essential that you keep copies of all you blood test results, to track your progress on the various levels of medication being prescribed.

Do you have a copy of the letter informing you of the medical evidence and proof of which antibodies were over range and positive at diagnosis and on which your treatment plan is based ?

Do you have your blood test result and ranges prior to taking the anti thyroid drugs ?

I found the Elaine Moore Graves Disease Foundation website an excellent well rounded platform on all things Graves Disease. Elaine has Graves and went through RAI and found no help nor understanding with her continued ill health, and as being a medical technologist in the States, she decided to start researching this poorly understood auto immune disease herself.

Roll on 20 odd years and Elaine now has several books published and has a world wide following through her website support platform.

You can also find out about " all things thyroid " through Thyroid UK which is the charity who support this amazing forum where you will always find answers and support with your health issues.

[MyNameIsAugust in reply to pennyannie]

Thanks Pennyannie, I will look into Elaine Moore. One of the things I find frustrating is how endocrinologists only treat the symptoms, rather than trying to find and treat the cause and reverse the disease altogether. I told my endocrinologist that I don't want to take medication for the rest of my life and she told me I may need to adjust my world view. I guess I just have to wait and see how my Graves' progresses. My ferritin and vit D are ok. I'll have to find out about B12 and folate. I think my GP checked them but I can't recall and I have not been keeping records. I take selenium, vit D, vit C, turmeric and omega 3 every day. My endocrinologist said I have mild GED so I added the selenium in when I read it may help.

[pennyannie in reply to MyNameIsAugust]

Well, yes mainstream medical have no answers as to the autoimmune component of Graves and very rarely test the antibodies again, or see them of any consequence.

It's very much up to the patient to read up, which is where Elaine Moore's website becomes an excellent resource.

Elaine has researched extensively especially into the AI component of this disease and you may find you need to revisit your life style choices as I read Graves is said to be stress and anxiety driven.

There is likely a genetic predisposition but something has triggered your immune system and if you find the root cause you will have a better understanding of what you can do for yourself in the future, including looking at food intolerances as well learning to how relax and do stuff that you enjoy, and be it it sounds a bit selfish.

Graves can occur because of a sudden shock to the system, like a car accident or unexpected death of a loved one.

I knew nothing when diagnosed back in 2003/4 and though well on the AT medication was told I was to have RAI treatment the following year. I too found little help nor understanding with my symptoms and purchased Elaine's first book in around 2015 and so started my Graves/ thyroid/ AI treatment learning curve.

Interestingly, having to work on myself back to front, so to speak, 3 months prior to diagnosis I was verbally abused and physically threatened by a man I had taken on as my assistant manager and was still working alongside him whilst going through the company disciplinary procedures.

Ironic or what ??

There is a the Thyroid Eye Disease charity here TEDct - and they can signpost you to your nearest TED O/P clinic where specialist help is at hand : I don't know if they stretch to Ireland, but worth a message as I believe they offer help and advice and whilst your TED is mild, we don't want it getting any worse.

My TED only developed after RAI - though at diagnosis I complained of dry gritty eyes, exhaustion and insomnia which were all resolved with the Carbimazole.

[MyNameIsAugust in reply to pennyannie]

When I saw the endocrinologist I told her I was interested in finding the cause and if it was food intolerance related I'd gladly adjust my diet rather than takes meds. I had breast cancer a few years ago and they had to throw the kitchen sink at it, chemo, radio, mastectomy, Tamoxifen. I'm 5 years out from that and so far so good. I'm on my last year of Tamoxifen. Tamoxifen gives me joint pain. But over the last year my leg muscles had become very weak. I wasn't able to stand up if I got down on my hunkers to look in the cupboards etc.. I was putting it all down to Tamoxifen and the after effects of chemo. I've been longing for the day when I am medication free. Then Graves' shows up!! On the one hand I was relieved to find it was something that could be treated. On the other hand, it's a pain in the neck to have what will probably be a lifelong condition. I was good at keeping records during cancer treatment and kept a diary of all my appointments. I'm kind of sick and tired of doctors now (as grateful as I am to them) so I didn't want to invest too much energy into this. I don't want to feel like a hypochondriac making a big deal out of every bump on the road but I'm realising now that I need to take charge of this.

Yes, I too have difficulty managing stress and anxiety. I have been reading some other books about Graves' that highlighted the stress/anxiety link. When I find myself being anxious I try to unwind by using relaxation meditations. But who hasn't had a stressful/anxious year in 2020? The restrictions in Ireland have been nuts over the last 18 months. It's illegal to dance in public here for goodness sake! But I won't get into that now. I'll restart my meds tomorrow and I'll start keeping proper records. I'll get a folder. I'll check out Elaine Moore too. Thanks again.

[MyNameIsAugust in reply to MyNameIsAugust]

P.S. That colleague sounds like a nightmare. I hope he got what was coming to him.

[Buddy195 Administrator in reply to MyNameIsAugust]

Definitely a good idea to take selenium with mild TED and use preservative free drops like HycoSan or Hyloforte. There is lots of useful advice on TED on TEDct & I found lots out about the condition/ spoke with their advice line re finding a TED specialist ophthalmologist in my area.I would try to get a print out of your blood and antibody tests. I was initially diagnosed as Graves and had ‘hyper’ symptoms but after following advice here to check, my antibodies actually show I’m hypo with Hashimotos, with TED later confirmed by ophthalmologist etc.

[asiatic]

I take 7.5 mg. C and 75 mcg. Levothyroxine . I take 10mg. and 5mg. of C on alternate days to arrive at the 7.5 which seems to work for me. As others say the side effects could be from low vitamins and minerals. I have a very healthy diet and was therefore surprised when a private blood test showed I was low on B12 /Folate/ vit D. Supplementing has helped. Recognizing your symptoms of being hypo and hyper can be very useful. Unfortunately, many can overlap eg. I am breathless with both and ok when my bloods are about three quarters way through range. My best indication is taking my pulse. Euthyroid about 60bpm. As low as 48 if hypo and creeping up to over 100 if hyper.

[MyNameIsAugust in reply to asiatic]

That's a very good tip to monitor my heart rate when I am in different states. My heart raced like crazy with I was hyperthyroid and I was breathless and I had tremors. I was afraid I had Parkinson's so finding out it was hyperthyroid was a relief. I found it really hard doing anything, I was getting out of breath and gasping and could hear the sound of my heart pounding in my ear drums! I'm not like that now thank God. I noticed hair shedding too when I was hyper and that eased when I got into normal range but came back again recently so perhaps that will be an indicator for me going forward. I know my Vit D is ok. I've been supplementing that for years. I think my GP checked the others but I'm not certain. I'll look into it. Thanks for the tips.

[asiatic]

I think my GP checked the others You will see it repeated many times on the forum that doctors say your results are fine meaning they are within range. However, in AITD you need them optimal - probably over half way.

[MyNameIsAugust in reply to asiatic]

Thank you. I'll look into them more closely so.