Haemochromatosis, Coeliac, Diabetes

[peter_s]

Is anyone else suffering with these three genetically related conditions? There is very little research available on the web. One paper does describe the diabetes produced by Haemochromatosis as "Therapy Resistant". It sure is. The usual tablets, Metformin and Gliclazide, minimum doses, made me really ill. Even without them, I have most of the symptoms of Hypoglaecemia (yes, hypo) frequently, especially at night. However, my meter says I am mostly above 8.0, although I have never managed to try it during the night. Hba1c tests were steady around 7.2% until the last, but my Ferritin results were pretty improbable too, and reported to me as different numbers at different times. Any advice is welcome. I'm not overweight, don't drink, never drank much, like 5 units a year, never smoked. Gluten-free diet over 30 years. Are the test results reliable when my blood iron is high? After the terrible results with tablets, especially Gliclazide, I really don't want to go on Insulin, too afraid of a real Hypo. Thanks, Peter

 

[michaela2015]

Is anyone else suffering with these three genetically related conditions? There is very little research available on the web. One paper does describe the diabetes produced by Haemochromatosis as "Therapy Resistant". It sure is. The usual tablets, Metformin and Gliclazide, minimum doses, made me really ill. Even without them, I have most of the symptoms of Hypoglaecemia (yes, hypo) frequently, especially at night. However, my meter says I am mostly above 8.0, although I have never managed to try it during the night. Hba1c tests were steady around 7.2% until the last, but my Ferritin results were pretty improbable too, and reported to me as different numbers at different times. Any advice is welcome. I'm not overweight, don't drink, never drank much, like 5 units a year, never smoked. Gluten-free diet over 30 years. Are the test results reliable when my blood iron is high? After the terrible results with tablets, especially Gliclazide, I really don't want to go on Insulin, too afraid of a real Hypo. Thanks, Peter

Hi Peter, I have Haemochromatosis, in February i had all the usual diabetic symptoms, drinking loads, losing weight, going to the loo, my doctor tested my blood before sending it off and it was in the high 20s, he put me on Metformin and Gliclazide, but they just wouldn't move, I was seen by the hospital Diabetic team almost straight away and the specialist explained that diabetics it one of the most common conditions of Haemochromatosis ( Bronze dieabetis) , my ferritin levels have always been around 45/55 I have regular Venesecion, I am now on insulin, I did try not to take it and over a 24 hour period my blood glucose when up when it reached 18 i had my insulin, but with a good diet i have not had many Hypos and the one's i have had im sure is down to not eating enough, i guess we have to do what we have to do in order to survive, I read some of the posts on here and do feel i am lucky, I am sure you will be fine x

 

[peter_s]

Hi Michaela, thanks for the reply. I have posted on here before, but it seems that there are very few with Haemochromatosis, fewer still with Diabetes as well, and nobody else with Coeliac disease too. If somebody does turn up, I have Psoriasis to add! They are all genetically linked. The oddity of my symptoms is that, having read a lot here about Hypos, I do have most of the symptoms. My blood sugar on my tester rarely goes above 9.5, in the morning, with the "dawn" stuff. I'm often lower, and that's with no medication. Your ferritin sounds fine, I suppose that's a result of the venesections. Mine goes up and down a bit, but it shouldn't be a problem. I have always had a good diet, and never a drinker or smoker. The problem, as I said, was a terrible, frightening reaction to Gliclazide, which increases Insulin production. I can't convince the doc and nurse that it was much more than just a bit dizzy. It was one of the most frightening episodes of my life. I am really afraid that Insulin injections will be much worse, possibly much, much worse.

 

[michaela2015]

Hi, When my doctor gave me Gliclazide she did warn me my sugars would drop and to make sure someone was with me, I took the tablet expecting my sugars to drop but they didn't, I really wouldn't worry yourself, I have had a couple of hypos but i know that's down to not eating, but now they seem to have settled down and for the first time in a long time my BS levels are normal, i think you have more control when your on insulin as well, you can manage your food intake and insulin, if you take a tablet you have that in your system and at the hands of the gods so to speak. I had hoped that my insulin would return to normal but it would appear the iron has taken over my pancreas so i now know i will have to take insulin for the rest of my life, but i really would worry yourself there are so many other dangers having diabetics than a hypo, so its important to keep your BS a normal as possible :O)

 

[steve595]

Hi Peter, i was diagnosed type 2 diabetes more than 3 yrs ago, a few weeks later after further tests i was diagnosed with haemochromatosis (as was my sister). My ferrratin levels at that time were 2300 after testing, i was going for venusection every 2 weeks sometimes every week to bring the levels down.It was quite shocking to me knowing that i would have to go for this treatment all my life, as well as the diabetes, i had more things to contend with, but over time i got to grips with it, my ferratin levels are down to normal now around 50/55, and i only have to go to the hospital every 3 months or so, ive had hypo,s temper losses too, i also go several weeks when i go into denial, but it soon wears off, i,m sure you will learn to cope with things, to me there are a lot of people on here i consider worse off than me, and i read their stories and i find a lot of them very helpful and encouraging, my BS levels range from 4.7 up to 8.

 

[peter_s]

Steve
Thanks for that. Like me, it was the diabetes testing that showed your Haemochromatosis, when ideally it would have been detected before the diabetes developed. I'm not at all in denial about the diabetes, although I find it very strange that my symptoms are very close to those reported on here for Hypoglycemia. I don't really have any hyperglycemia symptoms, except slightly high readings on my meter. However, when I did try medication, the results were frightening, very clearly hypo using gliclazide, repeated every tablet until I quit. I tried stopping and starting it 3 times before finally quitting, it was definitely the tablets. My guess is therefore that I am producing plenty of insulin, but the insulin-sugar reaction is blocked by the iron. That's why the diabetes caused by Haemochromatosis is said to be "therapy resistant". Apparently tablets don't work and injected insulin isn't always the solution. My Ferritin peaked at 470, and is now around 50. I typically have 5 or 6 venesections each year, after about 14 to get down to low 20s. I had some very contradictory results from the hospital; they said I was 28 on the phone, so didn't need another venesection, then I had a letter 3 months later saying that I had been 52, and I subsequently had three more venesections. It doesn't help when the same blood sample was given two figures. The hospital was going over to a new computer system at the time, so maybe something went adrift there. At the same time, I suddenly had a single Hba1C reading which was higher than my very steady level for 5 years, so the nurse wanted me to go onto insulin based on one doubtful reading.

 

[ButtterflyLady]

Hi, I'm a carrier for two types of haemochromatosis, and I have relatives with the condition who have regular venesection. It's a condition close to my heart because it's often not thought of, and knowing about it can save lives and do it very easily, if you catch it in time.

I don't understand the ins and outs of how haemo interacts with diabetes but I think its best to get blood test results you can rely on and for treatment decisions to be based on those. If in doubt, a test should always be repeated. I would place more store in a written (ie computer generated) result than one given over the phone.

If you try insulin, make sure someone is with you and, ideally, maybe you should be in hospital when you try it for the first time? Just a thought.

I don't know how the health system works where you are but I would have thought that with a number of fairly serious conditions, you would qualify to see a specialist doctor in at least one of the medical fields, preferably endocrinology. If your iron levels are in the normal range I'm not sure they would affect insulin, but if you have questions about this you should ask to see a haematologist if you can. I can't see how a diabetes nurse can know how to treat someone with co-morbidities that often doctors don't even understand well enough.

 

[peter_s]

Hi CatLadyNZ: Many thanks for that very down-to-earth and useful assessment. Just curious, do you mean that you have two of the defective genes for Haemochromatosis? I have one C282Y and one H63D. My son has two H63Ds, so presumably my wife is at least a carrier.

You are right about the tests; my diabetic nurse, then later the doctor, wanted me to go onto insulin as a result of one rogue measurement, when my blood sugar on the Hba1C test had been steady, diabetic but not too bad, for years. My Ferritin results, taken at the same time, were wildly different to those only a week later; and somehow all of them changed. Something wrong with their measurement/sample storage/filing system, I don't know which.

I do see a specialist in Haemochromatosis, but only once a year. I walk in, tell her I feel fine, I keep up with the venesections, when my Ferritin is over 50, so no problem. That's it, I'm out in 5 minutes.

The core issue seems to be that I probably produce plenty of insulin, which is why the Gliclazide made me so ill, it was trying to make me produce more. Then the iron interferes with the insulin-sugar reaction. Or maybe not; I have a very high haemoglobin level, so that might interfere with the Hba1C result, while the test strip figures may be inaccurate also because the iron level is so high. Test strips work by measuring the conductivity of the sample after an enzyme reaction. It seems to me that any iron present is going to influence that measurement, in particular to raise it.

The only definitive statement I can find on diabetes due to Haemochromatosis is that it is "therapy resistant". I can only agree with that. My concern is that I almost certainly don't need insulin, but I need to convince my doctor an nurse of that.

 

[ButtterflyLady]

Hi Peter

I wish I could help you more with the iron/insulin thing, but my understanding of the science is just not good enough I'm afraid.

Yes, I have one each of those two defective haemo genes. Which makes me a compound heterozygous - a carrier just has one of them, and a person with the full blown disease has two of the same kind. I have always been told that developing the full blown disease would be extremely unlikely for me, and my iron studies always come back in the normal range.

 

[peter_s]

Hi CatLadyNZ: Well, I'm sorry to say this, but if you have one C282Y and one H63D, that is exactly the same as me. Two defective genes, even if different, makes you Haemochromatomic as I understand it. As you state, the usual view is that a compound heterozygote will not have symptoms. I can unfortunately assure you that that is wrong. My iron was spotted at Ferritin=420, although it hit 470 in one measurement. That's very low for diagnosis, so maybe I was fortunate there. Factors in my favour were that I was a blood donor for many years, and the Coeliac disease would have reduced the iron absorption by my gut. Factors against:- Male, and 67, diagnosed with Haemochromatosis at 65, well past the usual age for diagnosis. I've had about 20 venesections over the last two years, and as far as I am concerned everything is fine, I just don't want to get onto Insulin when I am convinced by the Gliclazide experience that it is the wrong thing for me.

 

[ButtterflyLady]

Thanks Peter, I will certainly keep an eye on things but my Ferritin has never been over 150 in the 20 years since I was first tested for the genes. One of those genes, I think it is the H63D, rarely causes iron overload even in people who have two of them, like my Dad. I think being female makes a difference, and I am in my 40s too. I get Iron Studies done every year along with other routine blood tests and fortunately iron overload is really slow to develop, so we will catch it if it starts to happen. I consider it a lucky break, compared to those who have overload.

 

[peter_s]

OK, Ferritin at 150 should not be a problem at all, although you are sensible in keeping a check on it. H63D is said to be of Italian or Spanish origin, although I have no known link there. Our son has two H63Ds, with some minor symptoms, and ferritin of about 200. In the UK, treatment starts at 320, although in the U.S., it can be 150. Haemochromatosis is one of the two hereditary diseases separately known as "the Celtic Curse". The other is Coeliac disease. The link is probably through the Vikings, who spread both of them around Europe. I am one of probably very few who have both. They do actually offset each other to some extent. The only issue I have had with the Haemochromatosis is the Diabetes. Otherwise, no major symptoms. Venesections are almost enjoyable; I certainly feel better for them, quite remarkably so. I would like to think that they will reverse the diabetes, since it was caught fairly early.

 

[ButtterflyLady]

It's very interesting, isn't it? I hope the best for your diabetes too. My diabetes is now under control, my HbA1c is in the non-diabetic range, but I don't like to use the word "reverse" because if I went back to eating whatever I want, those numbers will get abnormal again. I will always have diabetes, but my HbA1c result doesn't show it.

 

[peter_s]

Sorry, careless wording on my part, I should have said that I would like to reduce my diabetes to acceptable levels. I have always had a "good" diet, because I am unable to digest fats in any quantity, a side-effect of Coeliac disease, and I have never been a drinker, which is probably why I am still here. I do get a good deal of exercise too, although more limited in the Hay Fever season, also, I learned recently, related to Haemochromatosis. The big effect is the venesection, where my blood iron level is acceptable now, but I am probably still dragging it out of all of my organs. My next Hba1C test will be interesting.

 

[peter_s]

Yes, my Hba1c was interesting, 7.2%, down from 8.2% in February. Still a diabetic reading, but shows that the 8.2% was incorrect; I have done nothing new, and I am not on any medication at all. I even had a doctor admit the possibility of "Human Error". Last year, the 7.2% did not change at all after I came off Gliclazide, which was really making me ill. Recently, I have been feeling fine again. Ferritin was down to 48, just inside my target of 50.

 

[ButtterflyLady]

Yes, my Hba1c was interesting, 7.2%, down from 8.2% in February. Still a diabetic reading, but shows that the 8.2% was incorrect; I have done nothing new, and I am not on any medication at all. I even had a doctor admit the possibility of "Human Error". Last year, the 7.2% did not change at all after I came off Gliclazide, which was really making me ill. Recently, I have been feeling fine again. Ferritin was down to 48, just inside my target of 50.

Good to see your HbA1c level has come down but it might be time to work your diet to get it lower. Do you eat a low carb diet?

 

[peter_s]

Thanks again for the reply. No, I don't have a low carb diet. I don't have any sugar at all, don't eat sweets at all, only eat cake rarely, and that only made by my wife using gluten-free flour and sugar substitutes. I don't drink any alcohol and never have drunk much at all, maybe 5 or 6 units a year. We do have a lot of vegetables, some meat (I have to avoid red meat, too much iron) and fish. I don't eat much fruit; I find most fruits too acidic now. I do have bananas and dried fruit. I have never been able to tolerate fats of any kind, an aspect of Coeliac disease; most animal fats make me vomit immediately. Some vegetable fats are OK in small quantities, but I don't enjoy them. Avoiding Gluten, fat, iron and carbohydrates doesn't leave much left. I am obviously unusual in having so many auto-immune problems at the same time. The latest Doc was also suggesting that I might be Hypothyroid, but the blood tests came back OK. I feel sure that you are right about the high-fat diet, for many people, just not for me.

 

[peter_s]

Several developments since my last post. I have had some strange symptoms, and have been told by two doctors that I am experiencing hypoglycaemic attacks during the night, and must keep some sugary drink handy. This is on no medication at all. Latest Hba1c, non fasting, because it was really a ferritin test, was 52. Latest info on here was that the treatment for "bronze" (i.e. haemochromatosis induced) diabetes is venesection, i.e. as I have been doing since diagnosed with Genetic Haemochromatosis. It obviously reduces my Hba1c just by taking out blood. However, I am still trying to get the schedule right; I had three venesections in just over two weeks, which really hit me hard and I feel brought on a bad bout of flu, due to reduced resistance. I can't just have vitamin C, it enhances iron absorption.

 

[michaela2015]

I was first diagnosed with type 2. Then they said it was my haemochromatosis. I say fortunately because that's how I feel because now I have type 1 due to autoimmune disorder. I had venersection today. Before I went I tested my blood and it was 13 when I came out after them taking a unit from me it was 13.5? The body is a very strange thing x

 

[peter_s]

Hi Michaela2015. Don't worry too much about the figure going up, that's probably just measurement error. It will take several hours, maybe as much as a day, to make up for the blood loss, which will largely come from your water (or tea, coffee etc.) intake. Then your Hba1c will come down, but the instantaneous test strip value will go down and then probably up again. That's about where mine often is, but I have quit measuring it, it just worries me too much. For Type 2 ( which arguably I am not) the advice is not to measure but to rely on Hba1c. After my third venesection as above ( I am in maintenance for Haemochromatosis) my reading was 52 (on the other scale, they never give me the same scale reading twice) which is just in Diabetic. Now since this is from the blood drained off, it was in effect before the last venesection, so I expect that I dropped out of the Diabetic range at least briefly afterwards.

I thought that treating Diabetes with venesections was a bit drastic, but effective if you accept Hba1c as the measure. If your Haemoglobin is high, mine often hits 18, then the results are said to be invalid, i.e. it probably overestimates the sugar content. However, we have to rely on HCPs advice. I was speaking to one locally a few days ago, and he confirmed that the treatment for "Bronze Diabetes", as the Haemochromatosis version is known, IS venesection, so my observations were correct. I feel rough when I need the venesection, and pick up remarkably afterwards, in fact I feel better before they have taken the needle out of my arm. (OK, probably psychological, but useful anyway) I really did not think that I could "feel" my iron level, but the venesection nurse confirmed that many people really can feel when they need treatment.

Try looking up Bronze Diabetes, sometimes called Brittle diabetes. It's said to be difficult to treat, with wide variations in readings, if you do measure during the day, and it can cause Hypoglaecemia especially at night, but not so far in my case serious attacks. A sugary drink has an amazing effect.

Good Luck
Peter