Weakened bones taking Carbimazole

[Jean168]

Hi I am new here. I have been diagnosed with Hyperthyroidism due to Graves two weeks ago . I had Hashimoto in 2021, but stopped taking levothyroxine after test results normal in 2023 at doctor’s advice. I have been testing on and off and it has been normal. Until recently found the Graves with TRAB test positive my other tests attached. I am on Carbimazole 25mg OD for two weeks but have not been felt myself , main symptoms are dry eyes with headache's and weakened bones and joint. I just wondered if anyone had similar experience with bone related issue. I have been diagnosed with osteopenia with risk of osteoporosis. I am not sure if I shall ask doctor to change to another prescription but all of them have side effects. Thanks

[Buddy195 Administrator]

I’m sure members with knowledge of bone health will be along soon to advise Jean168.

Regarding your eyes…. Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).

I recommend you take a Selenium supplement if you suspect that you have any symptoms of TED, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. Have you experienced any light sensitivit? If so, wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head. Above all, please don’t overdo it on Google images re TED, as they show ‘worst case’ scenarios!

[Jean168 in reply to Buddy195]

Thank you for advice. I think my eyes eased off these couple of days. I started selenium 200ug two days ago. It might helped. When I was diagnosed with Hashimoto, my doctor outside of UK also prescribed me with selenium as I was abroad. It helped to reduce my antibody I think. But this is just in my case.

[pennyannie]

Hello Jean 168 and welcome to the forum :

Both Hashimoto's and Graves are Auto Immune diseases and when the thyroid malfunctions it's quite possible to find more than one set of antibodies positive and over range in your initial blood test, which appears to be what we have here.

Having previously been diagnosed with Hashimoto's - a thyroid specific AI disease I don't quite understand why your medication was stopped as this AI disease systematically attacks your thyroid causing erratic ' hyper ' type swings in symptoms and T3/T4 thyroid levels but these attacks are transient and the thyroid resets itself but with diminished thyroid hormone production and longer term you become hypothyroid and are prescribed T4 - thyroid hormone replacement which is for the rest of your life.

Graves is a slightly more serious AI disease and not transient but a continuous build of T3 and T4 thyroid hormones and generally only gets diagnosed when the thyroid and or eyes are attacked by your own immune system.

Please ensure that any drops or gels you use to ease your eye discomfort - Over the Counter or Prescribed - are all Preservative Free :

You might like to look at The Thyroid Eye Disease charity tedct.org.uk where you can signposted to a specialist clinic where an endo and eye specialist work together to find the most appropriate dose of the AT drug for you to take to try and minimise the extent of the eye distortion that can be caused by Graves Disease.

Your T3/T4 readings are not very high and your results look more like a Hashi's flare than Graves though read that your Thyroid Stimulating Immunoglobulin is a positive :

Graves is treated with an Anti Thyroid drug to semi-block your new own daily thyroid hormone production and as your T3 and T4 start to fall back down into range hopefully your symptoms will be alleviated and you will feel more comfortable.

Does ' this time ' feel any different to the symptoms you had when first diagnosed Hashimoto's ?

All the AT drug does is ' buy you time ' while we wait for your immune system to calm down again -

Some people who are diagnosed Hashimoto's and Graves are treated with Block & Replace whereby a measured dose of T4 - Levothyroxine is also prescribed so that your T3 and T4 do not fall too far through the ranges from the action of the AT drug causing the equally disabling, if not worse symptoms of hypothyroidism.

The NHS generally allocate a treatment window of around 15-18 months with an AT drug - and should you not get on with Carbimazole there is an alternative - Propylthiouracil -PTU:

We do now have some research you may find of interest:-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most rounded of all the research I made is that of Elaine Moore - Books and website - which we now need to access through archive records - web.archive.org/web/2024122...

and for Hashimoto's many forum members find the research and suggestions of Dr Izabella Wentz worth following - and he writes as thyroidpharmacist.com

[Jean168 in reply to pennyannie]

Thank you Pennyannie. This is very helpful. My medication for Hashimoto was stopped as my blood test comes back normal with optimal range and it has been stable in the last two years until recently. This time symptoms with Graves were lot worse than last time. And I am not coping well with Carbimazole I think. Not sure it’s to do with graves or medication. Just generally not myself. I went to see my GP about my joint pain. She just checked my knees if any inflammation and dismissed me. I was referred to hospital but still haven’t got an appointment. I am about to take blood test in two weeks time. Hopefully my symptoms can improve.

[pennyannie in reply to Jean168]

I'm sorry but I don't understand -

Once diagnosed Hashimoto's and hypothyroid were you treated with T4 - Levothyroxine - a thyroid hormone replacement medication ?

A dose of T4 is prescribed to hopefully alleviate symptoms and bring back into range - and make ' normal ' your T3 and T4 blood test results -

and this medication is slowly titrated through blood test results over a couple of months to get your T3 and T4 back into the ' normal ' range and then to keep your results ' normal ' you need to keep taking the medication.

Once your thyroid hormones T3/T4 readings are in the normal ranges - you then stay on that dose of the T4 medication for the rest of your life -

as hypothyroidism a chronic long term health issue which does not resolve by itself :

Hashimoto's is an Auto Immune disease which systematically sets out to destroy and disable your thyroid and causes transient ' hyper type ' symptoms.

As this AI disease progresses your thyroid becomes damaged and with a reduced production of thyroid hormones which shows up as below ' normal ' range blood test results and why you are then prescribed T4 Levothyroxine - to increase your T3 and T4 blood test results back into the ' normal ' range and this medication is for the rest of your life.

So - anyway - I'm sorry you have now been diagnosed with Graves - and not comfortable on the Carbimazole - maybe ask to be switched to PTU ?

Also ask your doctor to run your core strength vitamins and minerals as if your ferritin, folate, B12 or vitamin D are not maintained at optimal levels this can compound your ill health further than necessary.

I can see a hand written result for your vitamin D at 75 -

I now aim to keep my vitamin D at around 125 - ferritin at around 100 - active B12 125 ( serum B12 500++ ) and folate at around 20.

[Jean168 in reply to pennyannie]

Thank you. Yes when I had hashimoto I was on levothyroxine for over a year and I was never on high does max 50 mg and gradually reduced over the year. Consulted my doctor and advised that I can stop but monitoring the blood result. It has been fine for the last two years. So I am doing cortisol saliva stress test. Will do B12 and folate test soon. I got all the minerals mentioned. This morning I had skin rash, this is one of the side effects of Carbimazole. I started gluten free last week and whole food if possible.

[pennyannie in reply to Jean168]

So, you still have Hashimoto's - you never recovered from it - as we are looking at an AI disease for which there is no cure-

and now you are diagnosed with Graves - another more serious AI disease as definitive treatment maybe suggested -

I've already sent you the research papers so please read these -

and check the Patient Information Leaflet - PIL - for the Carbimazole -

as yes - a skin rash can be associated with having started taking Carbimazole -

So ask to be switched to the alternative AT drug - PTU ?

[Torquaygirl]

hi it’s difficult as it’s early days yet for taking carbimazole, it’s usually 2-3 weeks before things settle down after starting pills. So it could be you are just still hyperthyroid. Obviously you have osteopenia so at risk of of osteoporosis, I think if joint pain doesn’t settle I would be asking for more tests. Dry eyes and joint pain could be caused by something else. Once you have one autoimmune disorder you are at high risk of others, as they like to be friends. I have Sjogrens which causes these symptom's and many people with Sjogrens get thyroid problems. Do google and find list of symptoms. If you feel you may fit then do ask gp to do an autoimmune screen of bloods. But do be aware it is possible to be sero negative too.

Good luck