Thyroid patient from the other side with questions

[anniet]

Hi every one.

I am a thyroid site member. I have auto immune thyroid, v low blood counts, ferritin is only 3. am seeing a gastro specialist today. is a reduced iron/blood count a 'symptom' cause of wheat intolerance or am I barking up the wrong tree.

My thyroid levels are ok but have slow digestion, what seems to be reduced acid (did the bicarb/burp test) ever so tired breathless just to name a few

any advice would be good

thanks

annie

[Jacks]

No but it is a symptom of coeliac disease. Ferretin levels (of 3) kept presenting prior to my coeliac diagnosis. You must feel exhausted. My gut is so badly damaged I can't get my ferretin levels up, despite continuous medicating. So don't delay. Ask for coeliac blood tests - but don't stop change your eating till you have had the blood work done - they can tell you within a week or so. [Boots have a blood self-test kit, don't know how reliable it is.]

If your blood is positive get an endoscopy right away or you'll be told to keep eating the stuff until you do. I'm surprised they haven't tested you as autoimmune thyroid disease is linked.

[anniet in reply to Jacks]

Jacks

Thank you for your reply.

I saw a gastro doc today and am having an endoscopy next tuesday.Oh what fun that will be.

I am really tired and it takes me all day to do what I used to do all day

.

My diet is usually low gluten, so for a few weeks I will top up on the thick sliced white.

Thyroid patients (as coeliac patients I expect) have trouble getting the doctors to believe that theres something wrong, as you can't see the problem. They don't test for thyroid hormone fully and if your in range they don't treat you. Its a hard fight.

I'm one of the forturnate that can get seen private (my husbands job has medi cover).

Thanks once again

I will be back on a regular basis when I find out what my guts upto.

annie.x

[Jacks in reply to anniet]

Hi Annie, I'm glad you can get the endoscopy done on Tuesday. You only need to eat gluten till then. The test isn't that bad, the worst thing is having to 'glute'. The endoscopist doctor identified CD so told me to go back on the GF diet straight away. All the best for Tuesday.

[Liana in reply to anniet]

I can relate ... good luck on your endoscopy. I've just been scheduled to have both an endoscopy and a sigmoidoscopy on the same day! Groaannn..not looking forward to that experience.

[anniet]

Thank you all so much. I might need you next week if i have to give up the grains.

[FionaGFG Administrator]

Anniet - did you have a blood test for coeliac first?

Whatever you do do ask for sedation - it makes it much nicer and less memorable as it's a bit like being in a dream. You'll need to fast before and stop drinking around 4 hrs before. Make sure they give you the right prep in advance and someone to wait & collect you after sedation. It wears off dead quickly but they won't do it otherwise. Also get your B12, Vitamin D levels checked. If all are also low these are indications of coeliacs as well. NICE guidelines recommend all patients with thyroid get coeliac tested sadly Drs seem slow to pick this up so well done for getting yrs too! Good luck. On the plus side if they can see the villi in the stomach are damaged they'll tell you on the same day.

[anniet in reply to FionaGFG]

They haven't tested for that as yet. It seems that they are going sraight in to see whats going on.

They should have a look at the internet and find out what to test for as it looks like 'we' know more about stuff than them.

annie.x

[kattypars]

Oh its not that bad I was going for sedation but changed my mind at the last minute. Just don't panic and breath nice and easy besides if you don't have sedation you can be up and running straight away but with sedation you have to have someone to collect you and all that jazz. Be brave thats what all these elderly people told me in the waiting room all came out smiling so did I

[FionaGFG Administrator]

Sounds like you had a good team and hospital kattypars. After listening to all the people gagging next door before I had mine I opted for the numbing throat spray and sedation. I came around at the end and didn't need more than 10mins recovery time so it will vary from person to person. I'd always recommend sedation as many coeliacs have very mixed experiences of not having sedation. Personal preference - but why not make things a bit more pleasant if you can?