My blood pressure is low after I phleb in the 90 over 60 range and it usually takes a day to get back up to normal which is about 110 over 70. Other than that it is normal.

i haven't had a phleb in over 3 yrs and this was a prob before i had the cath and still a prob now that i've had the cath removed. it's not consistent, only when i'm in a lot of pain.

i have a lot of stomach erosion and i have talked to at least 7 dr's about this and every one of them say that's it's not related to HH. yet every single time i have had my blood tested in the past, the pain was the highest when my blood pressure was low and tolerable when it was normal.

a little background.....before i was diagnosed, even though i wasn't a drinker, i had high liver enzymes, so a liver biopsy was done, which resulted in HH. by this time, i had been subjected to weeks at a time, in the hospital with an iv in my arm, which resulted in damage to the veins.

so, i had the cath put in for phlebs at which time my body completely shut down on me. i had to have it removed, because the dr's completely dismissed my systems stating that i was becoming a difficult patient.

after researching my diagnosis(which was given by a doctor)i discovered that this can happen when the vagus nerve is damaged.

so i have stopped going to the dr, but my systems are becoming worse. i don't trust the dr's anymore and just really don't know where to turn from here.

thanks for listening everybody!!

Years prior to my HH diagnosis, I would donate blood. Sometime I was rejected because of a low BP. I always ran low but did not have fatigue. I also had an issue with nerve damage but that happened at the blood bank. I demanded the needle be removed when I experienced a serve burning sensation at the needle site. The tech tried to tell me it was a normal sensation that would go away but I knew she was wrong. I lost feeling in the arm along the nerve from elbow to hand for over a year. That was the last time I donated blood.
Your blood is thick due to the iron. I also had two ports and had them removed because using a port does not work well with thick blood. Have you been using any supplements which thin the blood such as flax seed oil capsules, fish oil capsules or red yeast rice capsules? Also a few days prior to phlebbing, you should be drinking a lot of fluids to make it easier to find a decent vein. The nurse now will comment if I've done a good job drinking fluids saying the veins pop up better.
Because of my vein problems, I go to a hematologist/oncologist because the nurses are good in finding veins and use #20 needle which is two sizes smaller than a blood bank needle (#16). Usually a gastroenterologist's office does not have the smaller needles sizes.
Been at this since 1998.
JMHO

until this moment, no one has ever mentioned any supplements as a blood thinner.....geez.....why do supposed medical professionals let people suffer like this?

thank you, i will check into this

No doctor told me about the supplements. I found this info on the Yahoo group site for HH. Just be careful and don't overdo it. Otherwise you won't clot when you need to.
JMHO

Welcome to the group Scaredofdrs ,good user name .From my own personal experience I am also untrusting of my docs but since I joined this group back in 2009 my health has changed for the good ,you have to further investigate every single thing your doc says ,ask for every single blood or any other lab test results .I would bring my test results home and google them for every possible reason for them to be up or down from where they should be .Recently I had a bunch of blood tests run but doctors are reluctant to take the time to explain why one may be just a little low and another be a little high ,there are reasons but it would take the doc too long to discuss it unless it was getting to a near critical low or high to be left accountable for if you were to become real ill . After I research my findings I make notes on the same papers as the results that were handed to me from the docs office visit then on my next visit/appt. I bring all my findings back to the docs office to narrow it down ,this system has worked very well for me because I see many differant doctors and each one ussually has a differant answer but it really gets me pointed in a straighter direction as what to google next as being the possible culprit of whatever the issue at the time may be . Finding this group was the very first thing I googled which literally saved my life ,this combined group of individuals are by far more educated than most docs I see . Good Luck ,Queenie

I havent gotten a phleb this yr ,,but when ever my ferritin gets past 300 or so my bp goes down mostly my diastolic crashed to 60...After a few phleb I go down way down and get sick..So I only do half pints every other week,,,,Sometimes I wait longer..If I take b12 it goes way down go figure that one ... .
..At 300 or more I get breathing issues and palpitations ....Do half pints ..I made my dr write it up that way..Also go to a hospital to have it done as an outpatient ..U can skip weeks if u arent feeling good ..They are super flexible ...