Why I said argh & asked for name of blood doc

[Guest guest]

Firstly, profound apologies for my argh & run post. Stuff & sudden big thunder

storms made me post & run.

I will try to be brief (hahahaha). It started with what I call a head bobble.

My spouse, daddy to DJ had suddenly developed a head bob thing that seemed to

get worse over time. It took me 6 months if not more to get him to go to

doctor.

So he went & since I did not trust him (lol) I went too. Doing so has evolved

into us feeling like we fell down a rabbit hole.

This initial visit revealed a concern about the leg pain hubby attributed to an

injury a couple of years ago. Which led to tests. to rule out certain medical

issues regarding the head bob thing, certain blood tests were ordered.

The focus had shifted during this dr visit. Head bobble " might be familiar

tremor " . (think Hepburn)

Multiple tests done. Referred to surgeon. Put on aspirin therapy daily in the

interim (ahem my first fright attack). Blood results come back, doctor calls &

wants another blood test & a liver ultasound done. Results come back & Doctor

calls again & wants genetic test done. Genetic test comes back & doctor calls &

stays on phone a long time while hubby's eyes glass over. Next thing I know is

that doctor has already consulted with & made appt for hubby to see a gastro

doc.

Who hubby went to see today without me because DJ had early release.

Hubby comes home with order for colonoscopy (ok he is over 50) AND A LIVER

BIOPSY SCHEDULED.

New word of the day. Hereditary Hemochromatosis. Which I researched up until

last night. Blood labs & genetic testing already done definatively-no shadow of

a doubt-show the iron overload levels as well as the identifying inherited genes

that cause this disorder.

My research on this new word has liver biopsies down as obsolete due to the

advent of gene testing & the MRI. It also showed that treatment for HH should

start asap to prevent damage to organs, fatality & improve life. Untreated it

is a killer thru nasties like cancer,liver failure, stroke, heart attack, the

list goes on.

Bloodletting is the protocol. Just like when someone donates blood but more

frequently & more blood. To get the iron level to normal

Did I mention that hubby came home without a treatment protocol but with a liver

biopsie scheduled?? That it is hereditary & the gene mutations he inherited

results in the disease as well as passing it on? (The other gene mutation

results in being a carrier & passing it on)

If a family member has HH, the literature out there strongly urges that other

family members be genetically tested. My brother in law wasted no time in doing

so. He is a carrier. Which means that DJ will need to be tested. And if he

has HH can you begin to imagine blood being removed but that is another meltdown

for another day.

When I posted I was probably in a worse meltdown than all our kiddos could

produce. Brain would not work. Hours later I am still trying to talk myself

down from what feels like anger but is concern, confusion & fight or flight

response.

Rabbit hole because of a head bob. And because of conflicting information. If

gastro man thinks hubby has primary liver cancer or cirrosis (sp?) due to this,

I can sorta understand a liver biopsy. But not to find out how much iron is

stored in his liver since the labs give the number & an MRI would do the same.

Wouldn't a liver doctor & a blood disorder doctor be the ones to see???

Anyway. This HH is present at birth. It can cause what looks like everything

from arthritis to hypothyroidism & can cross the brain barrier. Hello, is head

bobble still familiar tremor?

BTW. Usually no symptoms & if there are any it is after age 50 in men & after

menopause for women. High in those with Irish ancestery. Is passed on whether

you have one inherited gene or from both parents.

Spouse's mother did not have a clue that she is a carrier.

Did I ever mention that DJ's mama died from liver cancer? I think I'll go cry

now. Tommorrow we will be either talking to primary doctor in person or on the

phone for some answers. He just doesn't know it yet.

Then I have to call DJ's endocrine doc.

Thanks for letting me vent. Simple blood test but specific ones are needed to

test for hereditary hemochromatosis. Public service announcement: apparantly

being tested for it saves lives-by being treated before damage is done. Through

blood letting.

If anyone wants the name of the specific test I will post it.

Kris who is currently beyond the need for drugs.