The Last of the Education-Part 3

 The following information comes from the Mayo Clinic website unless specified; see references entry for the links.

Hereditary hemochromatosis (HH) is the most common genetic condition in the world.  One in 9 people is a carrier (Hemochromatosis: Introduction , n.d.).  It  is a condition where the body absorbs too much iron.  This excess iron is stored mainly in the liver, pancreas, and heart.  Because of this, it can cause abnormal heart rhythms, cirrhosis, and cancer among other things.  Before the age of 50, men exhibit symptoms more often than women and frequently they do not show any symptoms other than joint pain or fatigue.

According to the site, the Lycan should not have HH because he is classified only as a carrier having the one genotype, but that seems to not be the case as he has all the other indications.  There could be the argument that what he has is secondary hemochromatosis, but then we would need to investigate which other chronic disease he has.   Because of all this, I will need to be tested in the future to determine if our boys are at risk.  If I am a carrier as well, then the chances they will develop it are fairly high.

There are a few things that increase a person’s risk for developing this.  Having two copies of a mutated gene, having a first-degree relative with it, being a male, and being of northern European descent. 

The treatment is so very simple (and free!), he just has to have blood removed until his iron levels are normal.  This is done just like giving blood for donation, only more often at first.  Once the levels are normal, then he will only have to have it done every so often to maintain.  There are even some blood centers that have permission to take the blood for use in patients.  The blood is safe for others to use.  If for some reason he ever becomes unable to have that amount of blood removed, there is a treatment.

The Lycan’s diet is going to change …no alcohol whatsoever, no red meat or organ meats, no raw shellfish (cooked is okay), and no supplements that contain iron or vitamin C as that increases the absorption. He can drink tea because the tannins in the tea slow the rate of absorption.  I am sure that there is more, but we have not  consulted a dietician yet. 

So, that is hemochromatosis in a nutshell.  I am sure this has all been very fascinating for y’all and if you read the entire saga I appreciate it. 

We will be back to our normal programming in the near future, so stay tuned. 

 References

Hemochromatosis. (2012). Retrieved from Mayo Clinic: http://www.mayoclinic.com/health/hemochromatosis/DS00455

Hemochromatosis: Introduction . (n.d.). Johns Hopkins Medicine- Gastroenterology and Hepatology.  Retrieved from: http://hopkins-gi.org/gdl_disease.aspx?currentudv=31&gdl_disease_id=c8bd9205-e51b-4186-b4e4-b5087b21f9ea&gdl_dc_id=9aa60584-3607-4d15-a459-bd3f67a3a4a7

Some Education-Part 2

In health care, there are providers besides the medical doctor.  The title depends on the training they receive.  I do not profess to be an expert, but I will outline the levels I know personally.

The medical doctor (MD) is the one most people think of when they hear the word doctor.  They have four years of general medical training and they go on for more in order to specialize.

Then there is the new doctor of osteopathy (DO).  They have the same schooling as the MD, but they go on to receive more instruction in the body’s musculoskeletal system and manual manipulation.  Kinda like a doctor and a chiropractor combined.  They also look at the whole body and how everything affects a patient.

Then you have the advanced registered nurse practitioners (ARNP) who are nurses that have a Master’s degree and specialized training to treat patients.  In New Hampshire, they can prescribe medications and work under their own license, not needing a physician to oversee their practice.

The last one is a physician’s assistant (PA).  They have the same type of training as an MD, but they have to be supervised by a physician.

All of these categories are qualified to treat patients and deciding on the type you see for a primary care provider is an individual choice.  Our former provider was an ARNP and he did a wonderful job with our family, but as I stated we changed for convenience.

Our new doctor is a jewel!  Dr. Amber Schmidt is a new doctor of osteopathy (DO) and has not learned many of the bad habits of providers that have been in practice for years.  She knows her stuff and is willing to listen to her patients. 

I badgered the Lycan into coming to the office for a visit with Amber.  While looking over his old lab results she noticed that he had not had a recheck on his liver counts for over six months, so she did the prudent doctor thing and ordered a whole slew of lab tests.  Well, his counts came back higher than ever.  She was talking to me about them and we were trying to figure out the cause when I remembered what the CL had said about the SD having a “blood disease”.  I mention it to her and she immediately starts consider about hemochromatosis.

She orders some more testing that includes some iron tests and a genetic test for this condition.  The iron tests come back elevated and the genetic test shows that the Lycan has one of the two most common genotypes. As diagnosis is generally made by a person have both of the common types we did one more iron test.  The results come back FOUR times the high normal limit.  By now, we are pretty certain that he has hemochromatosis, but she wants to get a liver biopsy for two reasons:  one, it will confirm the diagnosis and two, it will tell us if he has cirrhosis.  That information will tell us his long-term prognosis. 

Next on to what hemochromatosis is….

An explanation and some education, Part 1

I apologize to those who still read my blog here.  I know that I said recently that I would be back that evening or the next day to post again. However, we have recently received some news about the Lycan’s health and I have been doing a bit of research.  After starting this post, I decided that this should be a multi-part posting.  Today will be part 1 and contain the background story.   LOL 

Many of you many remember me ranting about the Lycan’s family, mainly his mother the crazy lunatic (CL).  Well, she is like most people I know and they cannot tell you the names of the medications they are on or why they are taking them.  There have been many things that she has told the Lycan where I have doubted the accuracies.  One of the things I always wondered about however was that his sperm donor (SD) has this “blood disease”.  He was not treated for it with medications, but one time one of them mentioned that he had to have blood removed ever so often.  I never thought anything of it.  Until recently…

Last year the Lycan had routine labs done when I was finally able to drag him into the clinic.  One of the things found was that his liver counts were elevated.  He had been on a cholesterol lowering medication, so the first thing our provider did was to stop that.  After three months, we repeated the labs and, while they were better, the counts were still high.  So, he got a liver ultrasound and it found that he had fatty liver disease.  This finding is not problematic in itself, the main course of treatment is to lose weight (which we both can stand to do) and watch the alcohol intake. 

Now, the Lycan did partake of quite a bit of alcohol in his teen years, but I would not characterize it as excessive compared to the majority of the people I encountered in my own teens.  Now a days, if he has a beer after mowing the yard it is rare.  I mean we have at least a six-pack out in the garage fridge that has been there for about two years.  Therefore, I was a bit miffed when our provider continued to tell him to go easy on the alcohol consumption. 

As some know, I have recently changed positions in the organization for which I work and it was more convenient for our family to change health care providers. 

More to follow tomorrow.