Mild Hemochromatosis - shortness in breath - heart palpitations - Dizziness

This is all very similar to what is happening with me, the gastro did tell me that fatigue and joint pain was a symptom but i didnt have it. which was a little strange. Compound Heterozygous C282Y/H63D I believe this is a very very mild form of HH but no mater which way you look at it iron over laod is present. I feel like abit of a idiot constantly getting fobbed of. If it wasnt for this form i would.

I am trying to get vensections sooner so i can agree/Disagree with the gastros opinion that the symptoms are unrelated.

I understand the gastro possbly sees this on a daily bassis hence why I was second guessing. But after reading alot about it and symptoms that other people have it seems like to much of a coincidence.

I have also had a stress test xray of the chest to rule out any heart issues and doctor in A/E told me there was noting wrong and that i shouldnt worry.

As you described i have shortness of breath for about 20-40 mins at a time and go away they come back again

I too was led to believe that compound is a mild form of haemochromatosis but Im not so sure. I also read that it is quite rare and few studies have been done around it. I read a medical paper from the 1960s that detailed the case of a man that had angina at rest with his haemohromatosis that went away after 18 months of venesections. He stopped vx thinking his problems had been solved and within 12 months angina had returned. He started vx again and the angina went away, coincidence?? I dont think it is as black and white as they say it is and they are still learning of new things related to haemohromatosis all the time. Maybe they only document what they can physically see and therefore people like us fly under the radar. Despite my symptoms I am continually discharged from cardiology like I am making it up! "if our machines cant see it then it doesn't exist" seems to be the current logic. I share your frustration at being told nothing is wrong when it clearly is. Nobody knows your own body better than you do.

Modern medicine is in its infancy, there are lots of things we dont know, cant see, lots of things we dont understand, cant explain and have no treatment for. Our docs only know what their text books tell them. If it isnt in the book your fighting a lost cause until the right person proves otherwise. How can they prove/disprove what they cannot see? It is well documented that microvascular angina (cardiac syndrome x) exists and that there are no scanners that can see it as the vessels it affects are only the width of a human hair. Who is to say that iron is not capable of clogging these arteries too? They say that haemochromatosis affects different people in different ways. I have to agree with them on that at least!

I dont have joint pain either. I do have fatigue though. Maybe different people store the iron in different places depending on our genetic make up?

There is plenty of research studies out there that prove various issues but drs don't bother to read them. They rely on the little they learnt at university, which is tiny.

Haemochromatosis programs have been set up for drs to do to gain further accreditation, but they don't bother, or prefer to focus on something else which is more fashionable, like prostate, obesity, diabetes, etc.

Thankfully im gettting somewhere with the appointments im sorry i should correct myself, i went to see a gastroentoogist if thats the right name who specialises in hemochrombtosis. I was refered to the consultant after the genetics test.

Just for reference

Ferritin was 535, transferritin is 43 s iron is 25 if that makes any sense.

It can be extremely frustrating being told there is noting wrong with you and you may have anxiety when you clearly know you own body. Also the waiting game for the genetics test is beyond a joke as you are left feeling the same way you went in to the doctor originally and the doctor normally just shrugs there shoulders and says its in your head.

Because the treatment is relatively simple the GP should almost prescribe 1/2 vansections while waiting on the genetics test to lower the iron levels regardless. if the patient feels even 1% better that would be a result in the short term in my opinion.

YOur TS% is less than the >45% marker for haemochromatosis, but sometimes this can happen.

In the meantime, you could always go donate blood at a blood bank but do not mention suspected haemochromatosis or high ferritin/iron.

If your Hb is ok, there should be no problem unless you are taking medication or illnesses which will prevent them from doing it. Be careful about talking about suspected symptoms if you have not been diagnosed with anything.

Hi Paul

I hope this is not the only reading you have done. It is necessary to read more formal and official medical research rather than blogs. As you don't provide much in the way of detail, e.g. what HFE gene/genes, TS%, how often you currently have vx, any health issues as a result of delayed diagnosis, etc. it is not appropriate to offer guidance from our experience, otherwise we are whistling into the wind so to speak.

Just think though, it is a better diagnosis than one that requires chemo or other such awful treatments, and also, diet does not cure haemochromatosis, regardless of what you may read in blogs and other unofficial websites. Just stay away from iron supplemented foods. The iron that exists in fresh foods will not harm you when you are being treated with vx. Vit C (including juices which contain a lot of fruit) with meals (not Vit C foods) promotes the uptake of iron, and calcium foods eaten with meals is proven to reduce the uptake of iron. So we have cheese, yoghurt as a dessert. But calcium also reduces the uptake of other minerals as well, so we are caught in a hard place. In reality, the small amount of iron that it reduces is of little consequence. Vx is the only successful treatment.

Also regardless of what you may read, tumeric/curcumin does NOT chelate or reduce iron. Otherwise all of India would be anaemic.

Eliminating sugars/starchy carbs from your diet will help reduce the risk of fatty liver, which we are all prone to.

If you have more specific questions, please provide the above information to get more specific answers because all the differences in our metabolic disorder makes a big difference.