I'm afraid the antibody results are inconclusive. I take it this is the first time you've had them tested? Antibodies fluctuate, so one negative test doesn't rule out Hashi's, I'm afraid.
Yes, this is the first time that I’ve tested them.
I didn’t realise that they were inconclusive and thought that I was ‘out of the woods’ - the Medichecks doctor said that I’m fine and there’s no sign of autoimmune activity.
I’m desperate to get to the bottom of things.
I’ve been so unwell for the last five years (had to leave work, have become bedbound, etc) and, because I’m 38, I’m running out of time to have children. It’s breaking my heart and no one (doctors) seems to want to help.
The Medichecks doctor said that because he's an ordinary, NHS trained doctor who knows very little about thyroid or nutrients. His comments aren't worth anything.
Antibodies fluctuate all the time. And you can even have Hashi's without ever having raised antibodies.
I’ve just posted my antibody results below (in reply to greygoose). I’m sorry for forgetting these... I forget a lot these days!
I’m being investigated for Coeliac Disease but there are huge delays at my local hospital (it’s in special measures). I’ve been waiting for nearly two years for my colonoscopy. I have a wheat allergy and so haven’t eaten wheat/gluten for over a year.
My mum has had lots of health issues over the years, but nothing has been diagnosed. She also reacts to wheat, has had mood and mental health disorders, bone problems, fertility problems, etc.
You cannot be tested for coeliac with a blood test unless you have been eating gluten for 6 weeks before test. They can do a colonoscopy and biopsy, I believe. Did you tell them that you had not eaten gluten for a year?
Yes, my GP and consultant gastroenterologist are aware that I’m not currently eating wheat.
They told me not to continue eating it (because of my allergy).
It’s all a bit of a mess, really. I’ve asked them how we will get an accurate result from the biopsy - when the colonoscopy is finally done - and they just do not answer.
I haven’t had a head injury. I had major surgery fifteen years ago.
I have periods every month. I’m 38 and have been having them since I was 13. I wouldn’t describe it as “heavy” blood loss, but they have become heavier in the last few years.
I’ve had iron and folate anaemias. They’ve been treated and I self-monitor my levels (with Medichecks blood tests).
I’ve also had vitamin D and magnesium deficiencies. Again, I’m keeping an eye on these.
My GP won’t agree to checking for any other deficiencies.
My B12 is troubling. It was first tested and was under 300. My GP said that I was fine - even though I had symptoms consistent with a deficiency, such as awful tingling in my hands and feet. Dr Chandy at the B12 Charity felt that I was deficient and recommended supplementation.
Hello LunaMa. I’ve just tried to answer a similar question above.
It’s a real mess of a situation. My doctors have told me to stop eating wheat (because of my allergy) but, when I ask how we will get an accurate biopsy result, they do not answer.
One GP even asked if I would agree to be removed from the colonoscopy waiting list. He suggested that I could be diagnosed with Chronic Fatigue Syndrome instead... before they’ve even tried to rule out (or in) Coeliac Disease!
It’s like my situation is too complex and they want to wash their hands of it.
Hi Pimly. Gosh, your Dr’s and Gastro’s responses (or lack!) don’t exactly inspire confidence, do they?! I’ve struggled with grains for years and 2 or 3 years ago asked about being tested for coeliac disease. I started to eat grains again & after some weeks (although probably not enough) had the blood test. That came back negative & the Dr said this was the more usual outcome, but that didn’t mean that I was OK with grains. He went on to say that for every case he was involved in 9 times out of 10 the test was negative but patients clearly had a problem with something in grains, but it just wasn’t an autoimmune issue.
Although I would prefer to have a clear diagnosis and I probably hadn’t eaten enough gluten before the blood test, I’ve just let it go. At the end of the day it doesn’t matter, because I know that grains (and yeast and starches generally) make me really poorly. With all the gluten free options in supermarkets now it is easier to live grain free, although because of the starch levels I still struggle with some of those. I’ve found the Keto approach seems to work well for me - there are some great recipes on dietdoctor.com that are quick and easy to make.
Thank you, LunaMa. I will check the Diet Doctor website.
I become horrendously unwell if I eat grains. My mum does, too, and stopped eating them 20+ years ago (when, I think, there was less awareness of Coeliac Disease). There’s definitely an issue, but I don’t know if it’s autoimmune.
We haven’t been able to get a reliable blood test result for the disease because, as part of the problems that I’ve been having with my intestines, I developed an IgA deficiency. It fell to 0.1.
Do you know if my thyroid results actually look okay? I’m really not sure how to understand/interpret them.
Hi Pimly, sorry for the delay in getting back to you. I was only diagnosed with hypothyroidism in early March this year and am struggling to get my head round the numbers in results myself.
I’m really sorry you are feeling so abandoned by the doctors - is there another one you can see at the practice? I sometimes feel that because I’ve had mental health issues in the past that there’s a ‘neurotic woman’ flag on my file, so my husband has attended some appointments with me to corroborate my symptoms. Have you had a full blood count done recently by the GP?
It was first tested two years ago and was under 300. I was taking the BetterYou multivitamin spray, at that time, and it includes B12.
My GP said that my B12 was within range. I spoke to Dr Chandy at the B12 charity - because I had symptoms consistent with a deficiency such as painful tingling in my hands and feet, exhaustion and breathlessness, a sore tongue, etc.
He said that the vitamin spray was “masking” a deficiency and that my true level would have been around 200. He recommended self-treatment.
I’ve been taking sublingual supplements since and my B12 levels are very high (1000+), but I still get tingling, feel exhausted...
I just wish that I knew what was making me so poorly.
When you are young and with so much life ahead of you it seems the role of the GP and others is key in managing your health. When you become older and grumpy like me - then you take things into your own hands and self-treat. After all you want the last few years to be the best possible and without the stress of battling those who think they know best.
I wonder how many self treating on this forum are over 50 ? - Time for a poll !
It’s like they’re leaving me to a life trapped in bed and there’s no curiosity on their part - intellectual, compassionate or otherwise - to get to the bottom of things and crack my case.
I’ve spoken to them about the fact that we want to start our family and that, because I’m nearly 39, time is running out... but nothing happens.
Maybe they hear worse every day? I don’t know. But I feel completely alone and without care.
The frying pans are made from “hard anodised aluminium” with a non-stick coating.
The saucepans have an aluminium “core” and stainless steel exterior layer.
I’ve checked our water supply (in East Anglia), but there’s no information on the water company’s website. I’ll give them a call.
I’m not certain if this is relevant, but I also wear a permanent retainer on my teeth (top and bottom rows) following orthodontic treatment. I’ve had it since 2016.
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