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Haemochromatosis, Coeliac, Diabetes

M

Mr Nobody25

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8
I suffer from being a coeliac confirmed by biopsy, compound heterozygous haemochromatosis, diabetes 2 and psoriasis on one side of my head and in my ears. Knew I was a coeliac in 2000 and then being prediabetic.
Now I am diabetic with the HbA1c test being 7.5. Ferritin 130. Peter had a lot of trouble with metformin. I am starting a course tomorrow but in the meantime have cut out all sugar but not complicated carbs such as the porridge I eat in the morning. My sugar levels seem to vary a lot, did a lot of errands a few days ago and had to go to bed with blinding headache and confuseion. Every day I start with a headache and fuzzy feeling making mistakes as I make the porridge, that takes over half an hour. After eating I feel much better
 
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Over the years low ferritin has been a problem, typical of a coeliac. Recently with a bout of low iron, I took iron tablets and it swung the other way into iron toxicity. I commented to my doctor could this be haemochromatosis, impossible was the answer I got - you are not Irish. Ah well, interestingly 23&me showed that I was 5% Irish, rest Celtic, I am Welsh 95%! I have also done Ancestry and can show that my grandmother must have enjoyed herself with an Irishman and of course compound heterozygous haemochromatosis was unmasked.
What relevance do these genes have to my iron problems. Perhaps it in simplistic terms a push pull situation, who knows!
I am A rhesus negative as well if that has any bearing on my situation! All I know is that my very good local doctor has no time to get his around this one!
Any comments most appreciated.
 
I have compound heterozygous haemochromatosis. It only came to light when my brother showed symptoms, and I was advised to get tested. Being a woman in my early 40's, it's not yet been a problem for me - they just keep an eye on my iron levels, and so far, I am slightly anaemic. But I'm led to believe that this will likely change after menopause.
I wasn't aware that it was linked to Irish genetics... I'm something like 2% Irish.
 
Welcome to the forums @Mr Nobody25.

First comment - my limited understanding is that iron conditions can distort hba1c levels, so I would not necessarily trust the diabetes result unless it was matched by blood test results. However, I will assume you are diabetic in the paragraphs below.

Your symptoms of confusion sound a bit like those of low blood sugar. Have you done a blood test then to see what is happening? Of course, it is possible that you have a normal blood sugar but your body is used to higher levels and is giving you a false hypo as a consequence. In which case this would gradually go away as your levels normalise, assuming that they are going down because of the reduced carbs.

Given your history of autoimmune conditions, has anyone done any tests to confirm T2 rather than T1 diabetes? (Cpeptide and/or GAD antibody tests?) Either condition will be improved by redicing the overall carbs in your diet (as if you are T2 you are carb intolerant and if you are T1 you are not producing enough insulin to deal with your previous carb load).

Not going to comment on the iron situation as I am clueless on that subject but I hope you are able to manage the condition yourself or your GP will be able to refer you to someone who will be able to help you.

Good luck.
 
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Yes, I must persuade my doctor to do those tests to settle the question of which type of diabetes I have. Looking at recent literature LADA T1.5 seems a distinct possibility as you say, with my long list of genetic based autoimmune disorders.
Your comments are much appreciated.
 
This is how of course my haemochromatosis was unmasked by the report in 23&me. My doctor would have never picked it up even though I had tremendous overload when taking iron tablets to try and bring up my very low iron.
Many thanks for your comments, much appreciated.
William
 
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I wish Peter_s was still around! Almost the same problems as myself. Metformin was a problem for him. Just taken my first tablet, we shall see. Have a look at his posts from 2015, very interesting. I hope he is still with us.
Doctors do seem unable to look a the whole person, we are dealing with a complex ecosystem here, fiddle with one part and the other goes out of sync. Seriously complicated.
 
To give a more precise question, why I am so exhausted, my leg muscles ache, I have bad ‘brain fog’, try and do some gardening, I can do very little, if I do some digging I have to stop. I go shopping in Lidl, exhausted. I have cut out a lot of sugar. My blood pressure is fine 123 over 70, almost the same 2nd and 3rd reading, my blood oxygen meter says 97% or more, blood glucose 130/131, too high?
I am on Metformin 500 twice a day. Any ideas why I am so tired and so much hurts? I keep on forgetting to say, I don’t have the insatiable thirst that is normally associated with T2, I urinate a lot, my PSA levels are well within range. Recently I put on weight, very suddenly up to 11/1/4 stone but now down to 11 exactly and probably going down with the Metformin.
I am totally exhausted. Is this what I should expect!?
 
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Mr Nobody25 said:
blood glucose 130/131,
Click to expand...
That shouldn't be too high, but when are you testing? Is that when you have the "brain" fog?

Normal (non diabetic range is 4 - 8 mmol/L with occasional very brief spikes higher (or 72 to 140 mg/dL if you are using those units). Urine only gets excreted if you hit 10 mmol//L or 180mg/dL so I wouldn't expect you to be very thirsty. Honestly, I wouldn't expect your current issues to be necessarily caused by the diabetes. Are you seeing a specialist other than your GP? I think an endocrinologist might be a better bet than a family doctor on this one.

And no, this is not what you should expect. Don't give up. Just because you have a complex set of possibly interacting conditions it doesn't mean they can't be sorted. Unfortunately with the COVID situation a lot of medical investigations are getting delayed, but hopefully you will soon get the help that you need.
 
No, I am not seeing an endocrinologist. Just my GP. I actually live in Ireland and getting bloods done takes two weeks at least even before Covid. As for seeing a specialist it could take anything from one year to four years maybe, if they remember you are on the waiting list. This is the reason why so many Irish present themselves at Accident and Emergency where bloods will be done on the spot. This really goes against the grain for me. Paying to go private is not much better. My GP is truly excellent but is fighting against the system.
What you say does make sense and I am very grateful for your encouragement and advice. Shame about my autoimmune problems and I forgot Iritis again on chromosome 6! Such is life and probably my demise!
Thanks again.
 
If any one can help interpret my bloods, I would be eternally grateful.
Iron 28.6 range umol/l 12-31
Transferrin 1.8 g/l range 2-3.6
TIBC 45 umol/l range 50-85
Transferrin 63 range % 21-45
Ferritin 116 range ng/mL 30-400
Date of analysis 13/04/2021
HbA1c 65 range mmol/mol.

The two transferrin, one is low but the % is high. The % does that suggest my underlying haemochromatosis is lurking there.
You can see that I am diabetic!
TIBC low - don’t understand.
Any help or ideas most appreciated.
William
 
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