Hi Stephanie, I can feel your frustration. I have written about this before so if you have already read my post - sorry. I have been very lucky with drs since Oct when I finally found the one who ran the right tests and found the HH. He is a Natropath and looks at tests differently than other drs I have gone to. He looks at the each blood test in connection to each of the others to form a story about the body. Although I am a carrier my drs.have confirmed the diagnosis. I am getting phlebs at my hemotologist/oncologists' office. She if knowledgable but doesn't know everything about it. I would say that drs can't know everything about every condition but the comment that at least it's not cancer is out of line in my opinion. I am not with Kaiser - do they have drs who lean toward a more natural holistic approach? You may get more understanding that way.
Good luck,
Kim

Thanks for your reply. No I had not read your previous post. I don't really have a choice for doctors. They only have two. The only approach is watch ferratin and do phlebs when levels are above 300. That is it literally. There is no discussion at all about holistic, or any advice at all.

Why let your ferritin get back up to 300, In my opinion it seems like it would be better to keep it consistantly around 50 then to let it go up. Your Dr should be helping you find a maintenence schedule for phlebotomies that keep your numbers consistant. Maybe you feel better at 300 but it sounds like the brain fog sets in over 50. For me my joints in my fingers will ache when I get over 50.

I have heard complaints about Kaiser here in Oregon. The insurance that I have is limited when it comes to my N.D. so I have to ration my visits to him.

In the past with different situations with drs I have had to be very firm and insist on certain things. Perhaps insisting that you get phlebs more often until you reach normal levels is the way to go. This is your body and you are paying for your treatment through your Kaiser insurance. Sometimes women are brushed off by drs - even female drs - and we have to assert our "girl power" and make them do what we know is best for our own bodies!! Since your dr needs to google info on HH maybe if you take research from medical websites that talk about phlebbing schedules, ferritin levels, etc. he will pay more attention. He seems to not have the time and/or interest in doing that himself.

You have talked about how terrible you feel - do you have a friend or family member who could go with you to help talk to your dr and advocate for you? Maybe a sort of show of force with reinforcements would instill an attitude change in him.

Have you thought about going to the Red Cross in between phlebs with the dr? Maybe you could increase them that way.

I am a former crime victim's advocate - I think there may be a need for strong patient advocates. When we feel so sick it is hard to be strong and assertive on our own behalf. I don't know if there is such a thing - I wonder if Kaiser may have something along those lines. It may be worth looking into.

By nature I am a problem solver so I hope that I can at least spark some ideas that may work for you and your situation.

I wish you the best. Let us know how things go.

Kim

My Doctor swears you can't have symptoms unless you are at 300! I had to call and insist on a ferratin test, I could feel my levels were high. It had only been 3 months, he said I didn't need a test until 6 months.
Thanks so much for the input, at least I know I'm not crazy!!! Well at least not about feeling the symptoms at 50! Lol

Ha! Good for you! You're not crazy - I know that because I'm several years older than you and I'm not crazy - I think. LOL

I had my third phleb today - I am sooo tired and irritable. I ate, drank and took a nap when I got home - it's only 6:40PM and I am about to get back into bed.

They took extra blood today to see how things are going. I will say that I took two asprin and drank a ton of water and tea and the bag was full in record time. However, I did feel more lightheaded than last time. Maybe it was too fast. Who knows? It seems that each time is different.

Take good care - time for tv in bed with husband and dogs.
Kim

I have been so frustrated with my doctors with this diagnosis. It seems I am getting different answers from the same doctors! When this started, I had difficulty eating, extreme fatigue and serious difficulty concentrating. I told my doctor and since my iron levels were high, he sent me to a gastro dr that did the test for hemo. I am positive, however, he told me that my symptoms have nothing to do with the HH. I was also told, that as long as I continue to have a menstrual cycle, this will take care of keeping my ferritan levels down. So, now, I am completely frustrated and lost! I do not feel like myself and am struggling with nausea, fatigue and moderate discomfort under my right ribs, causing difficulty in getting comfortable and sleeping. I thought the diagnosis and subsequent treatment of HH would return me to my previous life. Help!!

Liz, It seems that so many people have had frustration with their drs. It makes no sense to me that the dr told you that you are positive yet your symptoms have nothing to do with HH. Did he say what he thought was causing them? Your symptoms are indicitive of HH but also of hypothyroid - which often goes along with HH. I am not a dr and so I have no idea what else could be causing your symptoms, along with the HH. If you are having pain that may or may not be from your liver. Are you able to get a second opinion? My gastro ordered a liver biopsy and sent me to a hemotologist who ordered echocardiogram, and abdominal ultrasound. Perhaps your gastro will be willing to refer you to a hemotologist. Has the dr suggested a liver biopsy or ultrasound of your abdominal area?

It has been the general thinking that women who are still having periods are self treating because so many are not diagnosed until after menopause. I believe that is old thinking. I knew something was wrong with me for years. I finally found a dr who tested my thyroid but did not test for ferritin so I continued to suffer even though I was still menstruating. If I had known about this years ago I could have avoided a ton of illness, stress and lowered quality of life.

Be strong and advocate for what you need for you. Drs can only know so much and some just don't really want to bother. I have often thought that a man can be a gynocologist and know the technical aspects of womens' bodies and conditions but he can NEVER really know what we are talking about and describing to him. I think for that reason many drs just think that we are hysterical or whinny - I think this attitude carries over into other areas of medicine. I say, Assert your Girl Power and make them listen!

Kim

Thank you Kim for your encouragement. There was no talk of a liver biopsy. My dr initially was telling me how this left untreated could cause so many probs, then, just left me hanging. My labs did show my thyroid was off. Also, found that my ducts in my pancreas are switched where the large duct is in the small lobe and the small duct is in the large lobe. He stated this puts me at risk for pancreatitis. And that was the end of that. It is just very frustrating that for no reason that I can predict, some days I do pretty good, and some days I feel exhausted within an hour of starting my day. But I thank you for your response. I hope the best for you, though!

Hi Liz, I have the same issue that you have with fatigue. Some days I feel better than others. Sometimes I feel OK and then try to do something and hit the wall - hard. Some days, like today I wake up so exhausted that I am too tired to get up and even too tired to try to sleep more. Often, I am so tired that all that I want to do is sleep but at the same time I am too hyper to sleep. I haven't yet figured out a way to predict what each day will bring.

What a shame that your dr just leaves you hanging. That has to be maddening.

Take care, Kim

Liz, that whole thing about menopause is a bunch of crap, ( IMO )
I was diagnoses at 38 am now at 46 and still have my monthly right on time and I load iron very quickly. Every person is different and they should treat us all individually and not as a group. To say someones symptoms do not match HH is also crazy. I do not have a lot of the problems that some have and some do not have the problems I have. All are very different.

I went to iron disorders institute.org. web site and they have all a doc needs to know about HH. I downloaded and made a copy for my doc (new doc). and keep copies of all records. If your doc is googling, tell it to go to iron disorders institute. It has allot of good info and forms to help track your stuff. all so the doc should be watching the saturation of iron in your organs. that is the kicker. that is the reason we are bled down so far, to pull the iron out of the organs.
and you gals are right, you do have to stand up for yourself. I am on a maint. schedule now. and if you do go to the red cross, DO NOT let them know you have HH. in most states they either won't take your blood or have a special center for it. the closest center to me is 5 hours away.. i donate every 90 days. they don't ask on their forms if you have HH so you wont be lieing.
most docs are taught that HH is a Rare condition so they don't dwell on it. as far as they are concerned iron is good for you. I had suffered for many years from the "symptoms" of HH, all diagnosed as something else. i have had arthritis since i was in my 20s. i am now 60 and have it alllll over my body. and it is not necessary to have a live biopsy unless they are checking for damage, ie. cirrhosis, cancer. I had fatty liver and an enlarged liver and spleen.
well yall take care .
dc

Stephanie,
HH ferritin should never go above 50. 300 may be fine for a non HH man but even lab ranges show 150 for non HH women.

I was first diagnosed w HH in 1998 and I could write a book on some doctors' lack of knowledge on HH. What was odd was that the younger doctors were worse than the older doctors.

My current doctor lets me decide when to phleb based on labs. He told me I'm more knowledgeable about when I'm at my best. I like to keep my ferritin between 20-30.

I noticed no one here has mentioned transferrin saturation. That's what I use as an indicator for phlebbing. I get brain fog when I get near 40% so I like to keep that around 30%. That has to be taken fasting and in the morning as it can be volatile and not as accurrate later in the day.

I should mention that I've never been anemic. Some people can become anemic if their ferritin goes down too low. One time my ferritin was 6 but my hemoglobin was 12.0. I think that was my lowest hgb ever.

I also have hypothyroidism which causes fatigue and brain fog as well. I can't tell which is off, the iron or the thyroid when I get the brain fog. Lots of fun.

I hope everyone gets copies of their labs.

JMHO

Hi Steph,

Sorry to hear about your DX with HH. Are you the only one in your family with it?

I was with Kaiser for 12 years & they are the ones who actually found my HH. You however have to know how to "work' with Kaiser & know what exactly they can do for you.Kaiser really does have some excellent doctors and some excellent knowledge about HH. Instead of an oncologist ask to be seen by a gastroenterologist. They usually have a lot more knowledge about the subject at Kaiser. Also ask to be referred to an infectious disease doctor & cardiologist. Explain to the infectious disease dr you have HH and just want to make sure he/she at least checks you out at least once. My infectious disease dr @ Kaiser became one of our good friends because I saw him so much. Also when you see your cardio dr @ Kaiser make sure he reads up on HH. You might have to explain to him/her that there is a connection of heart problems with HH.

Hope you do better soon.
Cheryl

Lizlou,
Run, to another doctor, after my husband switched jobs we no longer had Kaiser, so I no longer had my wonderful infectious disease doctor or my great gastro dr, or the great team in the infusion center...I ended up having pain in my abdomen, vomiting, severe diarrhea for about a year. The gastro dr I was seeing told me I had celiac disease & to stop eating wheat. I told him he was nuts, that something else was wrong. My cardiologist saw me was concerned & sent me for a test on my gallbladder, before the results came back I was in ICU with a septic gallbladder & the duct on my pancreas was completely blocked and my pancreas was now damaged... People with HH get gallbladder problems which cause pancreas problems...Don't wait..It is very painful and not fun to live with..