hi there, I’ve not had to post in such a long time as I have been doing well. Unfortunately I had a very stressful life event and I suddenly have all my symptoms back of abdominal problems and stool issues. Feels exactly like how I started 3 years ago.
I am awaiting an mri/mcp scan result and have been put on urgent referral for a full body ct scan.
It’s really confusing because my current results are showing as being in remission as per attached image.
Could I still have graves symptoms even in remission? I am very scared of what else it could be.
many thanks
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epixme
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I’m sorry to hear that you’ve been having a stressful time. Stress alone can cause many gastric issues, so I hope that you manage to reduce this.
Are you taking any thyroid medication?
Do you have results for folate, vit D, B12 (in addition to ferritin shown)?
Have you tried a gluten free diet epixme? If not, it’s definitely worth eliminating gluten 100% for a couple of months to see if this helps. Personally, it resolved all my previous gastritis issues.
Thank you and yes it was a very stressful time. I am still on Carbimazole 5mg twice a week. I was tested for celiac and came back negative but I stopped eating gluten as soon as this started again. I also had a gastroscopy (not sure if celiac is tested for as standard). All came back fine. Also I included vitamins are in the post just above yours and all in range but iron a bit low.
I find this a useful site for ways to improve iron through dietary changes. My own ferritin isn’t optimal at the moment, so I’m trying to have vitamin C alongside an iron rich meal to increase absorption.
Your thyroid function in these blood tests is looking good :
Are you still taking the AT drug Carbimazole x 2.50 mcg daily ?
I see you also posted on the Pernicious Anemia forum - so have you been investigated and clear for PA, celiac and Iron Deficiency Anemia - as these common other health issues that can beset recovery ?
I'm sorry life events have triggered previous symptoms that previously resulted in a diagnosis of Graves Disease. and how long have these new but recognisable symptoms been going on ?
You talk it all through here, if it helps you, to untangle yourself and relieve the stress.
Your vitamins need some attention - i now aim to maintain ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.
Rolling back 3 years to your first post on here - you say you have AI health issues - but never went into any detail of what other health issues you are dealing with ??
Graves as you know is also AI so there is no magic cure and management and understanding of ones own ' self ' a life long learning curve that can impact your health when you least expect it -
What's been going on that may have started these stomach cramps and you feeling as though it's all happening again ?
Good to speak to you again. Hope you’ve been keeping well.
I’m still taking 5mg of Carbimazole twice a week now and think they will ask me to stop at my next appointment in 2 weeks.
I just can’t get my gp to even acknowledge any issue with my folate or b12 so I’ve put that to one side for now. Im also going to work on all of those vitamin levels.
I think my worst fears are going to come into play though once I get some results back from the scans. I have a horrid feeling that 3 years ago wasn’t just a case of Graves stomach issues and actually think I had a couple of pancreatic episodes as I went to A&E twice with all of the classic symptoms. (I looked at a diary I had made of my symptoms and they are exactly what someone with pancreatitis would have.) They just brushed it off as my local hospital is notoriously bad. One of the visits was when my gp said I think it’s your gallbladder and when I got to A&E they said you don’t look unwell enough. They didn’t check any of it out, my thyroid at the time nor check my pancreas. I feel like I had a similar reaction this time and now I’m in constant discomfort and not digesting food easily. I really hope it’s not what I’m fearing but I can’t think of anything else.
Thank you for letting me talk that out. Not expecting any reassurance etc. just like you said it helps to air it.
The other autoimmune I was diagnosed with in the past was Alopecia Areta but that’s up for debate as to whether it was actually my thyroid at the time.
I remember years before being diagnosed with anything ( though now realise I have been hypothyroid since a child ) I had terrible back pain between my shoulder blades - took my breath away and went on for a couple weeks - and I read gallstones and reduced my fat intake and this stabbing pain eased off and disappeared after a couple of weeks.
I didn't go to a doctor as I had already been investigated for severe constipation and been given Isolgel a granule type fiber drink which didn't solve the problem and I couldn't face going back to see a doctor again.
When metabolism runs too fast as when hyperthyroid - or too slow as when hypothyroid -
or forced to change speed as what happens when taking an Anti Thyroid drug -
the body's own natural absorption and digestion of foods is slowed, and your body also has trouble extracting key nutrients through your food no matter how well and clean you eat and your ability to eliminate food stuffs will also be slowed down.
Maybe your T3 is still a little too low for you, and maybe you now need to titrate down the AT drug further with a view to coming off the Carbimazole ?
Where are you in your AT treatment plan and when is your next endo appointment ?
I know what you mean about not wanting to go back to the gp. I’ve actually just had my mrcp results and all clear. CT scan tomorrow. I suppose at least they are looking after me at the moment. That’s interesting the pain went away when you changed your diet. I’ve drastically altered mine again over the last couple of months and very low fat. Tbh I wouldn’t be as worried if it wasnt for the change in colour of my stool (this happened to be pale on and off last time). As you pointed out I did wonder about the T3 or maybe the tsh being low. I need to look back at my results again. I might just stop Carbimazole on my own as the appointment isn’t far away. Next endo appointment is 28 feb.
I 'm post RAI thyroid ablation for Graves 2005 when I knew nothing and simply trusted the system and believed it in my best interests - and became so much more unwell - due the long term damage of RAI - I had no acknowledgement from the NHS and refused both T3 and NDT in 2018 and then started self medicating and have not seen a doctor since :
I think, I hope, I have already sent you the most resent research -
Yes you did send me the research and I also think it’s appalling that the nhs refused to acknowledge their part in your treatment . This area is so so misunderstood and it’s a shame we have to be even in that position about how we can help ourselves.
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and yes it was a very stressful time. I am still on Carbimazole 5mg twice a week. I was tested for celiac and came back negative but I stopped eating gluten as soon as this started again. I also had a gastroscopy (not sure if celiac is tested for as standard). All came back fine. Also I included vitamins are in the post just above yours and all in range but iron a bit low. 
Graves/hyperthyroid - not severe but wish me luck!
Graves’ disease - is remission possible?
Stomach Problems
Graves Disease problems
