Introductory reading for hemochromatosis
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Hello,
First time poster here. This place was suggested on reddit as an alternative to the Ray Peat Forum. I've really enjoyed reading from Peat influenced types on twitter and have listened to a few podcasts. I like the holistic approach to health and energy. If some of you wouldn't mind helping out a noob with some reading suggestions, I would be very grateful.
I've recently got a genetic hemochromatosis diagnosis. My ferritin was very high - almost 1400 last year. Doctors are putting me on a course of phlebotomy, with the aim of taking it down to 100 or so. I understand this can take about a year. The specialist I was referred to didn't seem very proactive about looking at potentially related symptoms, I read her out a list of issues, but think I delivered it in a spergy way which made me come across like a hypocondriac. So I would like to become proactive about this myself.
I'm Irish, and hemochromatosis is very common here. Theories I've heard to explain the prevalance are: historic diets very high in dairy, and allowing for better survival rates in famine conditions (I remember seeing something recently that suggested that patients with high ferritin had better survival rates when intubated for covid). As a teenager, I would drink about two litres of milk per day, but stopped this in my 20s. I've only recently started to drink milk again to take advantage of its inhibition of iron absorbtion.
I suspect I may be hyperthyroidic. I'm quite tall and lean (190cm/82kg). I run a high body temprature (subjective feeling - haven't measured it), have a very fast metabolism, am always hungry and find it difficult to put on weight (with three sessions per week strength training for the past two years). Something funny is going on with my heart (it isn't high blood pressure - doctor is going to check for arrhythmia, which correlates with hemochromatosis). I suspect I'm weaker than I should be after my training. My diet and sleep schedule is fairly good. I oscillate between high energy and fatigue. I'm fairly sensitive to caffeine and sugar, and with very enough of either, I can go into what feels like a hyperglycemic state.
The questions I have for the forum are:
[1] Is there any reading you could suggest that relates to these topics?
[2] What metrics would you suggest I measure via blood tests, etc to properly assess myself? (I can post some bloods here if that's helpful).I'm going to hit 40 soon, and would like to increase strength, bone density, muscle mass and joint health.
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I don't have any reference to recommend save for Chris Masterjohn's Nutritional Testing, currently at v1.3 You can do a search and likely it would be something you could purchase online. It tells you how to test for hemochromatosis. I don't know how you were diagnosed for hemochromatosis, but different doctors have different ways to go about it. Some merely look at serum hgb being very high and quickly recommend phlebotomy to lower it. A cousin was diagnosed this way and since I'm no doctor, he went ahead with regularly giving away blood. I felt more testing needs to be done as there may be other causes why his hgb is very high, such as low blood volume. If the cause of his high hgb (hemoglobin) is low blood volume, and he keeps donating blood, does that make sense?
I once was diagnosed for hemochromatosis long ago and I donated blood to lower my high serum iron. I was a noob then and didn't even care to ask for details. I thought I would be regularly donating blood for the rest of my life, as the cause as I was told was genetic. But at that time, I was doing other things to improve my health, and I never had to donate blood anymore as my hemachromatotic condition never resurfaced again.
But there are other causes for high ferritin other than having a hemochromatosis condition. Your body may have an infection or have heavy metals where having free iron to feed microbes or to worsen a chain of lipid peroxidation that causes oxidative stress that eats away at your tissues, so it would store the iron away in your tissues somewhere where the iron is never used to further harm you. So the high ferritin could very well be a symptom of an anemia of chronic stress, where you are anemic because not enough iron is also available for you to produce enough red blood cells..
I am not sure whether you are hyperthyroid as much as you don't have stable blood sugar regulation. You're not overweight nor obese so you are likely to be hypoglycemic and that is why you get hungry often. You are mistaking low blood sugar for high metabolism it seems. As having high metabolism where a lot of sugar is burned optimally means you can burn and metabolize sugar well and that you get enough energy round the clock and you don't fluctuate from having high energy to low energy.
Your being sensitive to sugar is because you are hypoglycemic, where on an empty stomach especially (when well past meal time and your blood sugar is just on the border of being low, if you take one teaspoon of sugar, the sugar will intake will quickly turn into blood sugar like a flash flood and overwhelm your poor ability to absorb and metabolize sugar, and your blood sugar quickly goes very high (because it's not getting absorbed) and this causes an insulin reaction that very quickly would cause the liver to convert all that sugar to triglyceride, and overdo it, leaving your blood sugar very low. That could easily get you to experience hunger to sleepiness, to fatigue, to getting your nose to secrete watery mucous, to sneezing, to hiccup, to suffering from a sore throat, which may up with you getting a fever or flu the next day. It depends on your context if any or some or all applies. I had all that twenty years ago, but I am not glad I am well past that.
But regular doctors could not help me. And I'm afraid that is just too common and that your doctor may end up getting you worse off. What saved me was having a good naturopathic doctor and since not all naturopaths are perfect, I had to do my own part as well in getting me well. It is a very dramatic transformation for me as I was very sickly for most of my early years,, and I hated it and I was determined to make myself better. Still, determination cannot speak for success as the more determined one gets the more one can get frustrated as nothing seems to work when those you seek for help know little or nothing. And being rich and well funded does not guarantee you get the best doctors, just the best marketers. I had become skeptical of the world by then and my mind was ripe to question the prevailing conventional wisdom, especially medical wisdom.
At your age, it's not too late even and it's good your are seeking answers posting.
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@yerrag thank you for taking the time to write about your experience. There are some very helpful things for me to think about there, and its great to see that people are willing to help out with suggestions on this board. I hope you're on the right road in your own journey.
Re the diagnosis, the doc got me to do a genetic test, which showed that I had inherited copies of the gene from both parents. I also have some family members who have been diagnosed. My understanding was that that was fairly conclusive. I hope that's not wrong, because I took some comfort in knowing that something has been identified with a clear path to treatment!
Finding somebody with the expertise and the motivation to help is very difficult. I think it's the case for any specialist knowledge (finding a good lawyer, a good mechanic, etc.) The challenge is in building enough knowledge myself to do some informed preliminary diagnostics so that I can ask the right questions of a doctor, and advocate for certain blood tests, etc. I'm very much at the start of my journey here, as I've been lucky enough to have very little contact with doctors throughout my life and no illnesses that have crystallised into anything close to a diagnosis. I will try to dig out blood tests later and post them here.
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@Carracci said in Introductory reading for hemochromatosis:
I suspect I may be hyperthyroidic. I'm quite tall and lean (190cm/82kg). I run a high body temprature (subjective feeling - haven't measured it), have a very fast metabolism, am always hungry and find it difficult to put on weight (with three sessions per week strength training for the past two years). Something funny is going on with my heart (it isn't high blood pressure - doctor is going to check for arrhythmia, which correlates with hemochromatosis). I suspect I'm weaker than I should be after my training. My diet and sleep schedule is fairly good. I oscillate between high energy and fatigue. I'm fairly sensitive to caffeine and sugar, and with very enough of either, I can go into what feels like a hyperglycemic state.
Hyperthyroidism causes thiamine deficiency by revving up your oxidative metabolism which just burns through your thiamine supply.
Thiamine deficiency would make you very sensitive to coffee, black tea, and sugar because coffee and black tea block thiamine function and burning sugar to make energy requires thiamine for the process (Krebs cycle/citric acid cycle).
I think you are running out of steam (fatigue) because you are thiamine deficient.
Thiamine deficiency would cause a hyperglycemic state because the burning of sugar gets blocked but the cells need to burn sugar so adrenaline will rise and signal the liver to release more sugar into the blood stream.
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Thank you for the reply. That's very interesting. Could that be the case even with a good diet? I eat a lot of fresh fruit and vegetables. What kind of blood markers would be good to test here?
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