hi, I got diagnosed with graves a couple of months ago (from high heart rate, dizziness and shaking legs). Thyroid was super high apparently and went straight into 40mg per day carmibazole. Within 6 weeks my levels had come down lots but I am getting this awful pain, not sure if it’s joints, bones, muscles. In arms, hands and knees. It moves around! At night it’s so bad I can barely move and I’ve vomited with the pain. I came off carbimazole for a weekend and initially felt instantly better but after 2 days the pains were back again and they started me on 100mg PTU per day. I am surviving on about 3 hours of broken sleep a night. I work and I have 5 kids. I’m in a bad place. Codeine , Naproxen does not help. I’m at the end of my tether. I feel sure it’s the drugs causing the pain but endo is saying it could be “something else, try your GP” and GP says see endo. Anyone had anything similar or can advise how it to help myself!?
graves diseases awful pain: hi, I got diagnosed... - Thyroid UK
graves diseases awful pain
Welcome to forum.
Do you have any blood test to share?
ptu should be adjusted by FT4 & FT3 not TSH.
When hyper occurs it can seriously affect nutrients. Being hyper and poor nutrients can cause the pains you are describing. Has Dr tested things like folate, ferritin, B12 and vitamin D?
Have Trab or TSI Antibodies been tested?
Please put country in your profile.
Hi
Thank you for your quick response! I’m in the uk. My T4 went from 90 down to 25. My T3 was 30 to 15. My GP sent for the following bloods : Pathology Request (Request Sent):
Calcium (WPE) (Requested), CRP (WPE) (Requested), ESR (WPE) (Requested), FBC (WPE) (Requested), Vitamin D (WPE) (Requested)
I asked about Trab as I’d read about that and she said she’d never heard of that!
My serum ferretin is high. Low phosphate and phosphate alkaline??
Request they also test B12 and folate
GP may need endocrinologist to sanction getting Trab or TSI antibodies tested
I have an endo nurse phone call next Thursday so will ask. I just need the pain to ease!!!
So Serum TSH level < 0.05 miu/L [0.3 - 5.5]; GROSSLY HYPERTHYROID results.
“Thyroid Receptor Antibodies (TRAB) have been added” - seems actually this was done but I never saw the result
So Serum TSH level < 0.05 miu/L [0.3 - 5.5]; GROSSLY HYPERTHYROID results.
Just having low TSH doesn’t mean necessarily hyperthyroid
Most important results are ALWAYS Ft3 and Ft4 and vitamin levels
Serum free T4 level 90.8 pmol/L [12.0 - 22.0]; Above high reference limit
FREE T3
Serum free triiodothyronine level > 30.0 pmol/L [3.1 - 6.8]; Above high reference limit
These are clearly extremely high
Thyroid Receptor Antibodies (TRAB) have been added” - seems actually this was done but I never saw the result
So you need to find out what result was
I will ask about Thyroid Receptor Antibodies (TRAB) results when I talk next Thursday- thank you
You cannot judge by a low tsh whether you are hyperthyroid. Full stop. Also to consider - pan interference. Take your bloods to a diff lab.
Welcome to the forum Hungrycoconut,
I would definitely push for correct antibody tests if Graves is suspected. I say this because I was initially diagnosed with Graves (largely on hyper-like symptoms, plus positive Thyroid Eye Disease, more commonly associated with Graves)…but later antibody tests showed I’m actually hypothyroid with Hashimotos.
Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
TRab
TSH receptor antibodies
TSI
Thyroid-Stimulating Immunoglobulin
TPO & TG antibodies may be Graves or Hashimotos.
TPOab
Thyroid Peroxidase antibodies
TGab
Thyroglobulin antibodies
And is the treatment totally different??
Symptoms of hypothyroidism and hyperthyroidism often overlap, so antibody tests can be very useful. There are also instances of people being positive for both Graves and Hashimotos.
It is essential that key thyroid vitamins are optimal- so do ask GP to test folate, ferritin and B12, in addition to vit D that has been requested.
So Serum TSH level < 0.05 miu/L [0.3 - 5.5]; GROSSLY HYPERTHYROID results.
“Thyroid Receptor Antibodies (TRAB) have been added” - seems actually this was done but I never saw the result
Can you get a full print out of results to find out if TRab was positive?
Do also add the ranges (in brackets after results) for previous FT3 and FT4 readings (as these can vary between laboratories).
I shall ask about TRab. Other results in brackets say this:
Serum free T4 level 90.8 pmol/L [12.0 - 22.0]; Above high reference limit
FREE T3
Serum free triiodothyronine level > 30.0 pmol/L [3.1 - 6.8]; Above high reference limit
Hello Hungrycoconut and welcome to the forum :
Was the pain there before you started the Anti Thyroid drug - Carbimazole ?
Do you have any other health issues ?
Insomnia is a common symptom when hyperthyroid - but I have never read of people experiencing such pain - but that doesn't mean it's not real - and it needs understanding.
Can you get some help as you are clearly not able to look after your children at this point in time.
Hopefully once the Propylthiouracil - PTU - kicks in your insomnia, at least, will be resolved.
The necessary antibodies will have been run from this initial blood test which showed high T3 and T4 readings - we just need confirmation of this fact and exactly what you have been diagnosed with.
It reads as ' likely Graves Disease ' named after the Irish physician, Robert James Graves who back in 1835 described seeing women with a swelling in their neck area and palpitations -
However my symptoms were mostly insomnia and once on the AT drug my 1 hour sleep at night was resolved and within a week I was back at work.
It would seem something has triggered your immune system and with Graves it's usually the thyroid and or eyes that take the brunt of the immune system attack.
The thyroid is a major gland responsible for full body function and synchronises your physical mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A faster than normal metabolism might see you eating for 6 - and still being hungry, weight loss, a faster bowel, over heating, palpitations, nervousness and irritability, over reacting, irrational, angry, just ' not you ' anymore, running on ' empty ' - and possibly with puffy eyes.
The thyroid is a major gland that you can't live well without and when the thyroid malfunctions the symptoms experienced can be multiple, diverse and scary and a bit like being on a roller coaster without any of the fun -
and Graves is considered life threatening if not medicated.
The medication is the AT drug and all this does is dampen down your immune system and semi block your new own daily thyroid hormone production and ' buys you time ' while we wait for your own immune system to calm back down again.
By restricting your new own daily thyroid hormone production your T3 and T4 will start to fall back down into the range and hopefully your thyroid will reset itself without the need for any drugs.
With Graves there can be something of a brain / body mismatch in what you think you can do and what your body can cope and actually do -
with your brain running very fast and telling you to - go further, do more, run a marathon -
but with your body totally shattered and exhausted and with you unable to do much at all -
and your body can be highly sensitised -
and you need to rest - but you can't rest as your brain can't turn itself off :
Please stay on the PTU anti thyroid drug and give it time to work -
right now you are in a horrible place - but things will resolve :
Fab post 👏
Thank you pennyannie. I was very fit and well prior to all this. The pain started 6 weeks after taking Carbimazole. So my thyroid levels are coming down but this pain has started. I don’t have insomnia - it’s just my “joint” pain is so bad at night I can’t sleep because of it.
I have some lovely friends who have been helping with the kids. It’s just hard to even accept help when I’ve always been so fit and able.
The endocrinologist said I had Graves. I didn’t think to question that in any way. I had some of the other things you mention - I was eating like a horse but losing weight.
I honestly think it’s the AT drugs causing my pain. Not sure after PTU if there’s something different I can try?!
Oh - ok - so the pain started within 6 weeks of starting the Carbimazole -
So do you have any blood tests for T3 and T4 since starting on the AT drug ?
Do you have online access to your medical records and can track your T3 and T4 levels - and you should be getting blood tests every 6-8 weeks and your AT drug titrated down as your T3 and T4 start falling back down and into range ?
There are only 2 AT drugs and now you are taking PTU - the only option to Carbimazole :
Graves tends to be a stress and anxiety driven AI disease and mostly occurs in females at puberty, child birth and menopause -
there can be a genetic pre-disposition with a family member - maybe an uncle / aunt a generation away from you with a thyroid health issue - and can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - or for others, seems to just come about ' out of the blue ' with no apparent reason.
The NHS generally allocate a treatment plan of 15-18 months with the AT drug and should ' remission - not be found ' the NHS may start to talk about definitive treatment - either a thyroidectomy or RAI thyroid ablation.
The AT drug will be dampening down your immune system and also controlling your metabolism and the aim is bring your T3 and T4 back down into range and maintain them at around 50% through the ranges - so neither hyper nor hypo and hopefully with you comfortable and able to get on with your life with as few symptoms as possible.
If your eyes are already ' upset ' RAI should not be an option as it is known to exacerbate symptoms -
We do now have some research you might like to read :-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
With metabolism runs too fast as in hyper - or too slow as in hypothyroid - the body struggles to extract key nutrients from your food no matter how well and clean you eat - so please get your ferritin, folate, B12 and vitamin D run as low, though likely ' in range ' levels can compound your health issues further than necessary.
The most rounded of all I researched - ( though around 10 years too late for me ) is that of Elaine Moore, books and now archived website -
My arms used to really hurt if I had been holding something (I used to rock my new born nephew to sleep) would have to take pain killers after, or if i done something like decorating etc. Anything repetitive. Paracetamol took the edge off, but I just had to lay my arms flat to help relieve the pain. I think it was something to do with vitamins. Since building back up my vitamin levels, it doesn't do it anymore. Maybe vit d or b12. Or it sadly might just be a graves symptom. Are your levels still up and down?
Thanks. My levels are still up but heading down in the right direction
Hi Hungrycoconut,
Your symptoms sound similar to mine when I was first diagnosed with Graves. My Vit D level was in my boots. I struggled to even walk upstairs.
Worth getting checked as everyone else has said.
Things do get better....I promise you that
Thank you. I shall spend another day chasing my blood test results !
Good morning -
We are legally entitled to copies of our medical records held by our primary care provider
You can arrange online access - which may make your ' chasing ' a little less stressful -
just ask the receptionist for the necessary paperwork and take some form of ID with you.
My symptoms were similar when I was first diagnosed, anxiety was so bad I couldn't drive, pains in back and limbs, I fell over outside and was nearly an hour before someone found me, I had no power in my legs to get up. I was put on 40mg carbimazole, came off it after a year, then relapsed, I am still on it today, with block and replace with 100mg Levo, I am so much better, I would say 70%, they are trying to get me to stop taking it again, to see how I am, I am refusing thyroidectomy or RAI. I felt better after taking vitamin D and a B Complex, although the latter made me feel sick, I take one a week now. Hope you feel better soon, it is terrible at first and until you come to terms with it too.
Hi there, I was diagnosed with graves last year. I tried carb and came out in a dreadful rash all over and if I remember rightly was very achy. (But I’m post meno so that’s a common ailment of mine anyway) So I was changed to ptu and have got on fine with that. Levels came down and plan is to stay on it 18 months. So relieved, as others have said, there’s only those two meds to try.
It’s a horrible thing to go through and I can’t even imagine how you’re managing with five kids (I’ve only the one!) but you’re being treated so with each day your levels will get nearer to normal. Don’t be afraid to advocate for yourself with medics! Wishing you strength x
Try natural hormone meds like Armour Thyroid
Armour Thyroid is thyroid hormone replacement for when with low thyroid hormones and diagnosed hypothyroid -
This lady is currently hyperthyroid and taking Anti Thyroid drugs to lower her over production of thyroid hormones and diagnosed hyperthyroid:
I too was diagnosed with graves. I had my thyroid taken out and have since taken Thyroid medication for over 15 years. Some of my symptoms I get is aching but not all the time. It definitely comes from the medication for me.
Well maybe you are not optimally medicated on your thyroid hormone replacement :
Maybe start your own post with your current blood test results and we can try and help work out why you have these symptoms - sounds like you could be under medicated -
in a nutshell you must to be dosed by your T3 and T4 results / ranges and not a TSH :
I'm with Graves Disease and post RAI thyroid ablation 2005:
What are your D levels like?
Graves’ disease and blood results 
Ideal mix of supplements 
Graves Disease - Exercise
Graves’ disease - is remission possible?
Graves to Hashimotos
