Thyroid issues

[Idalmis]

I have been on carbimazole 5mg for 5 years. All was well until last October when I went hypo. Gp told me to stop carbimazole and retest a month later which I did. I was referred. I went back within range. I never saw a consultant but a text message from my gp informed me to restart the carbimazole and retest at the end of February. I am experiencing a lot of fatigue. I don’t think it’s the carbimazole as I have only taken 2. I also ordered a blood test with medicheck. What is going on? My mum had a goitre. Her thyroid was removed and she had to take thyroxine for life. The last consultant I saw told me I probably would go the same way when the carbimazole stops working.

[PurpleNails Administrator]

Are your FT4 & FT3 levels right for you? & is carbimazole adjusted correctly.

Add your results & ranges. 

When diagnosed your TSH was low but FT4 & FT3 not out of range, in fact they were quite low by some ranges.  

The Carbimazole was stopped when TSH high but what were the FT4 & FT3?

Have you ever had the cause actually confirmed? With Graves you need positive TRab or TSI antibodies.  A previous post mentions eye pressure & TED.  Was this ever confirmed? 

If you don’t have Graves & you have nodule/s hyper functioning you will have to remain on treatment life long as if doesn’t not remit in the way that it’s hoped Graves will go into remission.  (Seems possible as you mention goitre & nodules)

You can have surgery (RAI may also be offered).  Carbimazole should continue to work - it’s simply that if function increases or decreases carbimazole will need to be adjusted.

Ive read of people being on it for decades- I’ve been on carbimazole 4 years.  Started 20 mg - mostly been on 10 & 5 mg alternating days. I had test to rule out Graves antibodies and a uptake scan to confirm hyper (toxic) nodule.  I also have eye issues similar to TED but doctors can agree on diagnosis as antibodies are negative.  

[Idalmis in reply to PurpleNails]

they’ve never tested T3 nor T4 this time and have never been told I had graves. I have a glaucoma but that followed an operation for detached retina. It’s under control with drops. As I said above I have bought a private test and will post the results on here. Thank you for your reply.

[PurpleNails Administrator in reply to Idalmis]

Inactive - as in non functioning?   How was that determined?

Wouldn’t inactive areas lower function?   The TSH would rise to enable the remaining thyroid to compensate.

[pennyannie]

Hello Idalmis ;

I'm not sure that the Anti Thyroid drug stops working ?

All it does is block your own natural thyroid hormone production and too much AT drug could mean you will become hypothyroid just as too little AT drug and you may become hyperthyroid.

Why are you taking Carbimazole and what have you been diagnosed with and do you have any current TSH, Free T3 and Free T4 readings and ranges ?

[Idalmis in reply to pennyannie]

I have never been diagnosed with graves only told I had a goitre and 7 nodules which were inactive. Out of 4 gps in my practice only 1 sent me to a consultant. The other 3 said I was only slightly off. I’ve ordered a test and will post the results on here. Thank you for your reply.

[pennyannie in reply to Idalmis]

An AT drug is prescribed for several reasons, so, ok. you too have a goitre like your Mum.

If you are not inconvenienced by this swelling and your wind pipe and food not obstructed I believe it is safe to stay on the AT drug long term.

Be aware though that since this blocks your own thyroid hormone production you likely need regular monitoring and adjusting as you need to keep you thyroid hormone levels balanced and at levels within the range that you find acceptable and free of symptoms -

When metabolism isn't quite right the body struggles to extract key nutrients through food so it will be a good idea to include ferritin, folate, B12 and vitamin D in these tests you are now arranging.

[Tythrop]

I've been trying to figure out my journey from Hyper to Hypo which might be what's happing to you...I'm no expert ,far from it , but get your t4 and t3 numbers checked as well as tsh .

Get your antithyrpid antibodies checked too. Maybe you have Hashimoto hypothyroidism which is " masked" by downregulated tsh .

TSH is not a thyroid hormone ,its a messenger hormone from Pituatory Could it be that you really are now hypo ?( after the HypER phase for which Carbimozl will have been prescribed ) .

Maybe your doctor is just looking at tsh numbers to the exclusion if t4 and 3 ?

Maybe the tsh has been permanently downregulated by the HypER medication ,so doc should be prescribing supplements based on thyroid numbers and symptoms ?

Ask doc what your t4 is, and if low AND if tsh low too , ask doc why ?

Not saying this is the answer,but a starting point

[Hidden]

I was on Carbimazole for three years for Graves disease before having a total thyroidectomy. I was told by my endocrinologist that Carbimazole was not a long term solution and had a risk of osteoporosis.

[PurpleNails Administrator in reply to Hidden]

Untreated hyperthyroid levels for a prolonged time is known to cause osteoporosis.  Research confirms its high FT4 & FT3 (& very low thyroid levels) but doctors think provided TSH is in range everything’s ok. 

Presumably if Carbimazole is managed appropriately the thyroid levels aren’t going to be hyperthyroid for a prolonged time. 

I don’t know of research showing Carbimazole osteoporosis.   

I have heard reports of doctors imply or over emphasise all sorts of terrible consequences to encourage definitive treatment.

[Hidden in reply to PurpleNails]

Hi, I was definitely told there was an osteoporosis risk. I felt awful on Carbimazole towards the end and had sore throats with it. I was also relieved to have my thyroid out as a small cancer was found in it...

[PurpleNails Administrator in reply to Hidden]

From the sound of it you weren’t given an option to remain on carbimazole by your doctor - you had to decide between surgery or RAI.  

Did you decide which, or did doctors ultimately opt for surgery.

The cancer wasn’t detected prior?  So surgery turned out for the best. 

Carbimazole is known to rarely induce agranulocytosis / neutropaenia (low white cell) this often presents with sore throat.  Other rare occurrence of pancreatitis & liver involvement are reported.    Osteoporosis not mentioned. 

Your doctor may have either been misinformed, or used arguments for “untreated” hyper conditions.  

[Hidden in reply to PurpleNails]

The endocrinologist just said that Carmimazole wasn't a long term solution and mentioned osteoporosis risk. However, I was dealing with multiple Graves issues including 'allergies' such as shampoo burning my scalp, anxiety (severe at times) and Graves Opthamology. I was going for bloods something like every 3 months. One day I burst out crying at a blood test as the pain was incredible. I swore at the nurse and I never do that. I was worn done with getting bloods dobe,I also ended up in hospital with heart palpitations a few times. The doctors knew I was having an awful time of it. I wasn't forced into anything and I chose the surgery rather than RAI. I think because I had Graves surgery was allowed but I had to have the lot out else the Graves would attack what was left.

The cancer was found by pathology. I had a bad feeling when the surgeon told me it had been a long operation and ny thyroid was 'sticky'.

Prior to Graves diagnosis, I had a purple stripe on one of my toenails and I had surgery to remove the nail and the nail bed. It tested negative for cancer and for fungal infection. The doctors did know what it was, I wonder now if it was early stage Graves. Around that time was when I would need to go to the loo more and many times at the office had to spinet to get there.

[pennyannie in reply to Hidden]

The most recent research is suggesting that the longer the patient stays on the AT drug the better the outcome for the patient - which turns on it's head the information I and many other forum members were told when we either had RAI thyroid ablation or a thyroidectomy when dealing with Graves Disease.

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

[Hidden in reply to pennyannie]

I was definitely told Carbimazole was not a long term solution and that RAI or the operation were the only solutions. I definitely asked whether staying on Carbimazole was an option and was told there was an osteoporosis risk.

[pennyannie in reply to Hidden]

Yes - I don't doubt it - I was told the AT drug too dangerous to stay on long term and was given a toxic substance to drink !!!

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

and so it goes on :

There is also claimed to be a risk of osteoporosis when dealing with optimal thyroid hormone replacement treatment and well used as an excuse not to increase thyroid hormone replacement levels leaving patients under medicated and suffering symptoms.

Personally I'd prefer to live well and symptom free rather than worry about a possible risk some time in the future and of course if it were such a problem a scan could be run to ascertain your perceived risk and monitor you accordingly.

No thyroid hormone works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels and the vitamin D combined with K2 MK7 tablets will direct the vitamin D to your bones and teeth.

[Hidden in reply to pennyannie]

I have just ordered a vitamin D test in, The last time I was at the dentists I was told my teeth were melting,,I have plenty of calcium in my diet. The first I heard of vitamins and thyroid management were when I went private last year as I was feeling so awful. However, my thyroid medication levels were fine on the second opinion. Instead it was menopause that raised its head. So just now I am dealing with tiredness and muscle weakness and menopause. I am due to get my B12 checked soon.

I refused the radioactive iodine. My gran took it twice. The first time she was told it 'missed'. She died of cancer many years later (multiple tumours all over her. She was riddled). I was wary to say the least and elected for surgery,

[pennyannie in reply to Hidden]

Yes, there is evidence that this RAI treatment causes cancer -

I wasn't even given a treatment option - and told I was due to have RAI the following year at my very first endo appointment as Carbimazole too dangerous to stay on long term :

check out - Elaine Moore as already detailed :

though no mainstream medical tells you any of this and when ill we are usually totally compliant and trust the professionals - - the risk window is 25 years - so I maybe out of the woods by 2030 :

[Hidden in reply to pennyannie]

Fingers crossed for you. Statistically it may be a fairly low chance but who knows. One of my 'allergies' was me drinking juice and it tasted of metal/like drinking poison. I lay on the floor choking and had to phone NHS24. I simply could not stomach the thought of RAI. I take each day as its comes. Some days are better than others. Some days I have a wee bit of energy and can do things. Other days I am totally exhausted. The allergies appear under control for now, I don't think my eyes are as bad following the thyroidectomy but I have to take tons of eye drops. I have had more heart palpitations (six months after the operations). I will try Elaine Moore's site. I never in a million years thought an incurable autoimmune illness Its why I joined this community. I thought is it just me who has all these symptoms...

[pennyannie in reply to Hidden]

Ah, so there is your genetic predisposition to Graves then - from your Gran :

[Hidden in reply to pennyannie]

Yup - it may go further back than that but I am aware of my aunt and my gran. I remember my gran had a goitre and bulging eyes.

[pennyannie in reply to Hidden]

There is no long term solution for Graves Disease as it is an auto immune disease and put simply something has triggered your immune system to turn and attack your body.

Graves is generally stress and anxiety driven though you may well have a genetic predisposition to this AI disease and the problem lies in your immune system not your thyroid as your thyroid is the victim in all this and not the cause.

The immune system is there to protect you but if triggered - it will start attacking you and when Graves attacks the thyroid and eyes the symptoms are such that you go to the doctors for help with the horrible symptoms being experienced.

All that the NHS can do is prescribe the AT drug to block your T3 and T4 levels rising higher and higher causing more symptoms and the hope is that your immune system calms down and your thyroid reverts to ' normal ' once this attack from your immune system resolves.

elaine-moore.com - for all things Graves Disease :

[Hidden]

Hi PennyAnnie - family history & work pressure I think were the bad combination for me. Yup - Graves has no cure. It does worry me that both my aunt and gran had thyroid issues and both died of cancer. My gran in particular was riddled with tumours including brain tumours. Both were smokers. I didn't even think about the family history until I was diagnosed. There is also B12 deficiency on the other side of the family.

[pennyannie]

Apologies Idalmis -

I have gone somewhat off track on your post -

so shall close my conversation with Hidden and we can pick it up on her post which I had already replied to earlier if she wishes.

Sorry for all the emails ;-