I was diagnosed with Thyrotoxicosis & Hyperthyroidism as a result of undiagnosed Graves’ disease in May this year. Since then I have been on carbimazole & propanalol aswell as an anti sickness tablet. My levels have been monitored fortnightly and tweaked where needed. Everyone tells me, doctors included, the sickness is normal, but I am vomiting every single night always around 4/5am and it is awful. It hurts so much and I get so hot and sweaty during, I genuinely feel like I might pass out. This is happening easily 4/5 nights a week and it’s the same cycle weekly. Can anyone shed any light or did anyone have similar problems at the start of treatment? I struggle to differentiate between needing to be sick or needing to go for a number 2, haven’t had a solid stool in months and i am pooping 6/7/8+ times a day it varies so much. But again apparently this is normal because of my meds now.
Just wanting someone to shed some light hopefully put my mind at ease that this is normal at the start of treatment. Thankyou!
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Morticia6x
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Morticia6x, This sounds awful, and is not something you should be experiencing.
Please add some more information that will enable members to help. Firstly, what dose of each medication (i.e. carbimazole, propanalol and anti sickness tablet) are you currently taking?
What time of day are you taking those medications?
And what were your most recent test results whilst on this does?
Thank you! My mum forced me to go to the doctors after having my symptoms for months on end. I just assumed being female my body was being weird so ignored it. These were my levels when I had my initial blood tests to see why I was so unwell
For full testing you need TSH, FT4 & FT3. TPO & TG antibodies. It’s really important Graves is confirmed with positive TSI or TRab antibody tests.
Have folate, ferritin, B12 & vitamin D, been tested. Gluten issues common with thyroid autoimmune, have this been tested?
What dose of carbimazole did you start on & currently on?
Did you start both medications at same time?
Was the vomiting issue since you have been unwell of since medication.
Loose bowels can be common symptom but sickness is not.
Carbimazole can cause sickness but this can usually be managed and eases within a few weeks. If this is causing an issue the alternative is PTU. An older type of anti thyroid.
vitamin D & B12 fine, not sure on folate, ferritin & gluten issues but i’ve never had problems before being diagnosed - is that common? The vomiting was a symptom that made me go to the doctors before I was diagnosed.
I hope these are the correct results you need to see haha!
TRab high above range so this confirms Graves diagnosis.
Carbimazole dose needs to be adjusted to keep FT4 & FT3 around mid range.
If drs try to go by TSH, because TSH can be unreliable, it can results in low thyroid levels. TSH stays low & doesn’t reflect thyroid levels.
You haven’t included lab range. Ranges vary between lab, so always needed. Last FT4 looks low by most ranges. Sometimes FT3 can stay disproportionately high, or too low compared to FT4. Either way both FT4 & FT3 need to be checked.
Gluten allergy / intolerance a very common association with Graves. The gluten allergy screen - anti gluten antibody test - Tissue Transglutaminase (TTG) IgA test can be tested by GP or privately by a kit. You need to be on a gluten diet at time of test.
Intolerance won’t be detected as test confirm allergy. So even if negative for allergy a large proportion benefit from trialling strictly gluten free diet.
Vomiting might be due to gluten.
NHS information on coeliac - also explains “Other health conditions can increase your risk of developing coeliac disease, including: - thyroid conditions”
That will allow levels to rise a little. I started on 20mg then reduced to 10mg. Levels went a little high again. So was on 15mg then 10 again. Then 5. I kept getting switched between the two doses but then settled on 5 / 10 alternating days. Was fine for long time but it's a case or checking frees and adjusting dose.
I had the early morning dash to the bathroom daily 20 years ago when I had post partum thyroiditis. It went on for months. I have since been diagnosed with Hashimoto’s.
it came with a side serving of exhaustion, anxiety, insomnia, paranoia, brain fog and rapid weight loss (for which I was congratulated🤦🏽♀️)
I would definitely go back, it’s not normal. In my case I wasn’t on any medication for it but was on the pill I think, was probably lactose in that, but now know that I have a reaction to lactose all dairy and gluten. When I gave up dairy and gluten I went to 1 movement a day, and I slept better as my tummy wasn’t churning.
Check the ingredients/fillers on everything you take including supplements. Ask to test all your vitamins as the constant movement mean you aren’t digest and absorbing nutrients properly. 🌱
Your T3 and T4 are now back down in the ranges - so your symptoms should start to be relieved - has this happened and do you feel more comfortable ?
All the AT drug does is ' buy you time ' while we wait for your immune system to calm back down again - but quite why your immune system has been triggered to turn and attack your body, rather than defend it - the 64 million $ question -
There can be a genetic predisposition with someone in your extended family, probably a generation away from you - with a thyroid health issue - and Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - or simply occur ' out of the blue ' :
When metabolism runs too fast as in hyperthyroidism or too slow as in hypothyroidism the body struggles to extract key nutrients through food no matter how well and clean you eat - and low levels of core strength vitamins - those of ferritin, folate, B12 and vitamin D - can compound your ill health further than necessary and considering the symptoms you have already experienced in this phase of ill health - please get these run and we can advise where optimal levels tend to sit.
The NHS generally allocate a treatment window with an AT drug for 15-18 months and during this time you should receive regular blood tests and titrating down of the AT drug -
since your T3 and T4 are already back down in the ranges you should be on as low a dose of the AT drug as possible while we wait out this first phase of Graves - with the hope being that your thyroid resets itself without the need for any drugs
The most recent research we have suggests the longer the AT drug is used the greater the chance of finding remission -
Quite why this is still offered as a therapy in a health care centre is beyond my understanding.
If you want to read around Graves - the most well rounded of all I researched - though some years after my diagnosis of Graves and RAI treatment in 2005 - is that of Elaine Moore - books and website - elaine-moore.com :
Yes I think that's a perfectly reasonable request :
I see your AT drug has been reduced down by half to 10 mcg twice daily -
Your T3 and T4 levels are good in the range now and it would be good if you can maintain them both at around mid point through their ranges.
Keep a note of your symptoms now and anything new that occurs -
What about the Propranolol - are you still taking the original dose - as this tends to slow down the conversion of T4 into T3 -
Too low a level of T3 causes symptoms of hypothyroidism - just as too high a level of T3 causes symptoms of hyperthyroidism - so it can get a little confusing as some symptoms can ' sit ' in both hyper and hypo camps.
You might like to read around on all things thyroid on Thyroid UK - the charity which supports this patient to patient open forum and within its website there is a list of both hyper and hypo symptoms - maybe get this printed out for yourself and tick as appropriate as it might just help you understand better where you are in this phase of ill health thyroiduk.org
I forgot to add, symptom wise I am still the same. I suppose day to day I feel a little better to how I did pre diagnosis & pre treatment? But the sickness etc is still the same. My symptoms are hot sweats/uncontrollable flushes, sickness, diarrhoea, insomnia, severe anxiety, sometimes tremors but this is controlled by propanalol. If I get to sleep, I’m waking up at the same time every night between 4-5 to either be sick or go to the loo.
I had these symptoms prior to any medications yes! I am yet to see the endo, my GP says because I went untreated for a while my sickness is relatively to be expected!? Maybe a little but not to this extent I don’t think, and especially not for this long after treatment has began. I’m just confused and scared
You will be confused and partly why this forum exists to try and help people unravel the medical mumbo jumbo as most of us have been there ourselves and now through the other side and just here trying to help and support others caught up in the system, who are unwell and looking for reassurance and understanding.
I'd also ask your doctor again about this sickness as maybe there's a different medication you can take -
and as well as getting the ferritin, folate, B12 and vitamin D tested also ask to be checked out for pernicious anemia and celiac disease - as these are other AI diseases that tend to also occur when the immune system is upset, if these have not already ben run.
I'm presuming you have been signed off sick, please don't be scared, things will calm down, just rest and can I ask your age - I can't find it on your Profile page.
I do appreciate everyone’s help so much, this group is a great help! I went to the doctors yesterday for bloods so when I get the results I will upload onto here. I will ask about the other testing, I am 23 years old female. I’m out of work with a note from my doctor stating I am not fit for any work. I try not to get myself worked up but I really am worried. Thankyou xx
OK then - start a new post when you have any new information so all forum members can help and support you -
and please complete your Profile page as best you can - if you haven't already.
Please rest, try and do things you enjoy and be kind to yourself-
maybe get yourself a large painting by numbers and focus on something other than your health as this simply is not healthy and drives unnecessary thoughts of doom and gloom- getting worked up achieves nothing - though I know its easier said than done.
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