I could not imagine having phlebs done 2x a week. Your iron levels must be up there and your life in mortal danger to warrant having phlebs done 2x a week. I remember feeling so wiped out when I had them done once a week, it ruined 8 weeks of my life. You should ask your doctor if this is safe and what medical practices he is basing his treatments on, how many cases has he handled and if there is any dangers involved with having phlebotomy's done so close together. You should should read up on HH and choose the right line of treatment that you are comfortable with, the days of doctor knows best is gone when dealing with HH, go back and read some of the previous posts here and you will see that.
Here is a helpful link:
http://www.commerciallysound.com/IDI/Disorders/TreatmentPhlebotomy.asp
I have been getting phlebs for almost 5 months now, I started off at 1 a week for 8 weeks and then once every other week up until now. They still wear me down and it takes at least a week to get my mojo back.
My advice is to read and gather all the information you can and become an advocate for yourself, you know your body and if you have lived this long with iron overload taking another week to de-iron should not be that big of deal. Peace be with you.

i only did once a week, theres a lady on here "zzzzj", who has done 2 times a week phlebs, and would be your best contact.

Welcome cowgirl27411,

Nah....... you should be fine:) and NOT "in mortal danger". I'll break my comment into 2 parts so that it'll be an easier read and I'll apologize now for the length of it!

Part 1:

I was diagnosed 6/2010 with ferritin of 4097. My main complaint was horrible fatigue (though my liver enzymes were elevated & it felt like my liver was bigger than it should be) I tested positive for C282Y/C282Y. Parents are carriers.

I did the first couple of months with weekly phlebs & my ferritin dropped to just above 1,000. Then, I started going up & up & UP. I topped out at 10,363 and immediately started twice weekly phlebs and I continued to do twice weekly for 13 MONTHS! Then, around October, I went back to weekly phlebs till about Jan 2012. I haven't had a phleb since March.... my ferritin was 47 last month, so I will do another phleb at the end of July.

I never had diabetes (pancreas is OK and my A1C has dropped 1 point), had high blood pressure for 3 yrs before diagnosis (came off BP meds about 3 months after I started phlebs & my heart is fine), thyroid is the same tho hypothyroid since early '90's. My liver was enlarged but it's back to normal (which will be confirmed this week after an ultrasound to compare it to 2 yrs ago) Other values are now normal like liver enzymes, ferritin, TIBC, UIBC, etc... My liver biopsy (which I only had to have after my ferritin jumped sooooo high) showed some slight scarring (it may be OK/better/healed) since de-ironing.

With weekly phlebs, I was tired and took a nap everyday when I got home and occasionally had heart "flutters". After I started twice weekly phlebs, I was more tired & had heart flutters daily and was short of breath... I got winded just going up/down my basement stairs (due to the decreased red blood cells carring oxygen to my lungs/body, ie.. low hemoglobin). I went on a 2 week vacation to Hawaii & just walked slower & took a few breaks when going to botanical gardens & such. (We took shuttles/carts through the airport so that I didn't have to walk & even used a wheelchair at one airport to keep from having to try & walk thru 2 terminals)

continued.....

PART 2:

When I went back to the weekly phlebs, I started noticing my shortness of breath was getting better & my heart flutters were much less noticeable.

I had a phleb on a friday in March and left for Hawaii, the following Monday. My girlfriend was amazed at the difference between the two trips.. Oct 2011/March 2012. I walked faster than her & another friend thru the airports and had NO problems when walking/breathing while sightseeing. I cannot remember the last time I had heart flutters!!

My energy level has improved soooooooooooooo much but I'm not back to normal yet. My brain fog has cleared a lot! My motivation is still low (don't feel like doing laundry & housework & don't care, either).

I'm hoping & praying that my body will be fine since I found it earlier than maybe too late. Luckily, my PCP believed me when I told him I suspected HH so he referred me to the GI for the workup & genetic testing. I chose to be treated & followed by a hemotologist/oncologist.

Hang in there..... we are ALL different and we ALL respond differently:)

Good luck,

zzzzzzzzzzzzzz

Thanks Mike1126 ! How are you doing???

zzzzz

Thanks for your informative response! I'm just wondering if there is anything other than just resting that can help with the post-phleb fatigue...
I was just diagnosed Monday. I am only 23....so I guess I am finding it super early...I started feeling really bad back in 2008, and after years of hunting around for the issue, dealing with doctors who think I am too young to have any serious health issues, and one unnecessary surgery (they took my gallbladder out because of my severe right sided abdominal pain), I think I have finally found the problem. I have had chronic pancreatitis issues, and severe pain that wraps around my right side for years....My question is: should I have had a liver biopsy...or is my liver safe as long as my liver studies keep coming back normal. Can I have scarring and inflammation in my liver, with normal liver enzymes?

Make sure to hydrate yourself before and rehydrate after the phleb. I also use it as an excuse to eat a lot afterwards. Sure makes me feel better :)

My Doctor did special MRI iron scans instead of a physical biopsy but I was lucky the insurance covered it.

zzzzdj,
been doing great. i had a ferritin reading of 7 last month, with very low saturation numbers, so the doc has put me on 6 month phlebs, so im totally happy. its been a long road since my 3500 reading

WOOHOO mike!!! How do you feel at 7? I am shooting for 20-30 but I was 39 in May & 47 in June. The doc said he'd like to keep me below 50, but I told him 20-30 was a good number for us to strive for:) He said OK. BUT, I did agree with him to wait one more month, have a ferritin level, & if I'm 50 or higher, then I'll do a phleb.... just in case I drop 30'ish:)

cowgirl.... Yes, birkita is right. Rest & a nap plus food & liquid is probably the best before/after the phleb.

re: liver biopsy..... it is an invasive procedure with it's own risks. If the doc suggests one, ask what he will do with the information and/or how will the information change his treatment plan (phlebs). Go with it if he has good reason for concern:)

zzzzzzzzzzzzzz

Yes the 2X per week phleps are a bit tough but worth it. I had ferratin levels of 6855 and had to have this done for a few months. Take some B12 and calcium with magnesium as the phlebs will drain you of trace elements as well. Drink LOTS of water before each phleb and rest after each one. You'll be fine.
The liver biopsy is needed if your levels are over 1000 as the excess iron is stored mainly in your liver and you need to know if any damage has occurred. Cirrhosis is not uncommon even among non-drinkers.
Stay positive and hang in, it won't take as long as you think to get down to a reasonable level (under 50).

I take the same supplements as Irony plus zinc (suggested by my hemo) and glucosamine Sulfate for arthritis/knees.

zzzzzzz

Ugh....Had Phleb #3 yesterday and my BP was too low for me to leave...so I had to hang out there for about a half hour until they felt I was okay...even though my BP only topped out at 95/55....I am normally right at 120/80....I am worried that Phleb #4 is gonna totally wipe me out on Thursday.....Such a pain in the butt! Today my head is splitting! I am trying to drink some extra water...I will try some of the supplements mentioned.....

Cowgirl,, are they hanging fluids before or after your phleb? My BP dropped really low a few times (I had been normal for MONTHS) and I asked them to hang a 500cc fluid and I did ok. I only had one nurse that give me fluids a couple of times but the nurse I usually had, didn't, even though the doc had originally ordered it with every phleb.

Good luck!

and I did the Monday afternoon/Thursday afternoon schedule, too. Seemed like the afternoon, after being up for awhile... eating... drinking might have helped.

zzzzzzzz

Sorry to hear what you are going through! What has helped me alot is taking a sublingual B Complex once a day (along with fish oil / flaxseed oil). After about 4 days my energy increased very noticeably. Though if I forget and stay off for awhile I notice a difference! The B complex also contains folic acid which helps with red blood cells.

I drink about 2 to 3 protein shakes a day also which helps (crushed ice, skim milk, couple spoonfuls of yogurt, some fresh fruit, scoop of low iron protein powder). This helps me quite a bit too.

A nap for a few hours afterwards definately helps some.