I have posted on here before. I’ve just been diagnosed with severe iron deficiency anaemia which has got so bad that my haemoglobin is below range and ferritin at 6, iron at 5 (range 5 to 30) and transferrin saturation index at 7 (range 16 to 45). and the GP has offered me an iron infusion. I feel awful!
My question is I was tested for and endoscoped for celiac in 2011 when my ferritin dropped to 3 (and lots of other invasive tests and colonoscopy) and all negative. I was on fairly limited gluten at this time.
I have untreated Hashimotos as my levels are not bad enough for treatment despite very high TPO antibodies and TG antibodies. My TSH is normally around 1 and FT4 mid or high range and FT3 bottom of the range. I have a multinodular thyroid gland.
I have struggled to get my ferritin to a reasonable level
for years - I have limited ( but some gluten in my diet) in the form of lager, occasional cake and cross contamination.
My very recent B12 is great at 541, folate near top of the range and Vit D is 99. I take the odd supplement for these.
My celiac antibodies were slightly raised but negative recently but GP thinks this is due to limited gluten. CRP inflammation < 1 . I have a light monthly cycle which has got heavier recently due to the anaemia. I am 50 years old!
I have now started ‘gluten loading’ for my endoscopy in 3 weeks and am having the worst reaction when I eat it:- palpitations, urticaria on face and neck, sinus headache, intense nausea after consuming, now a raised itchy skin rash on my lower legs, stomach cramps, hangover feeling and now taking ibuprofen every day just to get through the ordeal. I literally feel poisoned! I also feel really down which is unusual for me.
Does anyone have any thoughts as to whether this could be celiac which is now full blown or just a severe gluten intolerance combined with Hashimotos malabsorption? The only real change I have made to my diet this year is to eat way more porridge (just normal Quaker Oats) and I have a lot of dairy (yoghurt, milk and cheese) and have read that calcium can block iron absorption. I don’t feel great after the oats but nothing like the gluten reaction! I am also underweight!
I am now on Iron Spatone water and Ferrous fumerate as want to try and avoid the infusion if possible.
Thanks very much for any thoughts and hope this isn’t too off topic ! Sorry so long as well !
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Elsa1509
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It will probably take months to raise your levels with iron tablets and Spatone. Is there a particular reason you don't want the iron infusion, that will most likely raise levels within 24-48 hours.
Thanks so much Seaside Susie and yes I should go for the infusion. I have read some people get terrible side effects from this - if you don’t mind can I ask if you had any?
I feel slightly more human after one week on 3 iron tablets a day and spatone but I know it’s going to be a long haul and also eating lamb’s liver! My first time of eating liver since a child!
I had severe iron deficiency but was forced to raise my levels with iron tablets. It took me nearly two years to get my ferritin to middle of the reference range. Grab the chance of an iron infusion with both hands!
Thank you so much humanbean. I have just replied to Seaside Susie and thank you for your advice on the infusion. If you don’t mind me asking why were you so iron deficient?
Regardless of coeliac test result, You probably need to be absolutely strictly gluten free, vast majority of Hashimoto's patients aren't coeliac but are gluten intolerant
Strictly gluten free diet includes avoiding all cross contamination, avoid shared butter, jam, need separate toaster using gluten free bread and definitely not just buying ordinary oats, but certified gluten free ones. etc etc
Gluten free larger is pretty good and available in many pubs
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to an absolutely strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Important to keep B12 at top of range. A daily good quality vitamin B complex, with folate in should help
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Improving your vitamin levels is absolutely essential and should help improve your use of thyroid hormones.
This may increase TSH so that medics recognise you need Thyroid hormones. If your FT3 is at bottom of range you need replacement thyroid hormones. I.e. Starting on Levothyroxine
Suggest you have iron transfusion and go absolutely strictly gluten free after endoscopy. Regardless of the actual result
Retesting thyroid and vitamins in 2-3 months time
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Thank you so much SlowDragon. I take 150mg of Magnesiun most days and my other vitamin results were good in recent blood tests due to supplements I take. I really appreciate your advice and I had decided that whatever the result of the endoscopy I will become strictly gluten free which I haven’t been until now. When I increased my gluten intake I realised how terrible it makes me feel. I know i’m really Intolerant even if not a celiac!
Also as my fT3 is always bottom of range (I have private thyroid tests now) I will discuss with my GP as I have so many fibromyalgia symptoms.
Thanks so much for all the links you sent as well. I really believe we can only improve our health if we have knowledge and you have been so helpful. I’ve been described as ‘complicated’ by my very supportive GP’s (I am lucky in that respect) but I know I also have to help and empower myself as much as they try and help with all my health issues that crop up.
This is such a helpful forum and I am very grateful for everyone’s input.
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