Okay, Guys, Need Your Input On Something.....

[Canadian Karen]

Last week, my family doctor's secretary called to say that the dr. wanted me to come back to discuss my test results. She was testing my iron, which has been steadily declining in numbers for the past year. The secretary made it sound like it was urgent I come in, so I was thinking okay, maybe my iron took a real nose-dive.

Well, went to dr. today and she discussed the fact that she wants me to get "systemic iron" by either shots or IV. She wants me to contact the professor at St. Mike's who is treating my celiac disease to see which method he prefers.

She gave me my numbers, and I really don't have any idea how to interpret them. Here goes:

HbG - 114

HcT - 0.334

Iron - 7

UIBC - 65

TIBC - 72

Saturat - 0.1

Fe - 10

Keep in mind, this is interpreting doctor's scribbling, so although I am sure of the numbers, some of the letters might be a bit off.

Any guesses?

Thanks guys!

Karen

[Carriefaith]

I'm guessing that your iron levels are low. Do you eat a lot of iron from natural sources?

[Canadian Karen]

We have tried several different methods for me to get iron into my system. Most recently, she has had me taking my usual Centrum multi-vitamin and in addition to that, I was taking three 50 mg Elemental Potency Iron from Jamieson. We have been doing that for about three months now, but the numbers are not climbing.....

Hugs.

Karen

[ebrbetty]

I've been anemic most of my life, nothing I take,eat helps..every Dr tells me its my mediterranean blood

[mommida]

That explains the brain fog/headaches from anemia.

So are these treatments different from a blood transfusion? Are there any other options available?

[jerseyangel]

My iron plummeted before I was Dx. I was lightheaded literally all the time and would pass out if I stood for too long. I'm sorry that I don't know what your numbers mean--my Dr. only told me that my red cell count went from 11 to 8.5 in 2 months time. After being on the gluten-free diet for 6 months, she did a new round of blood work and my red cell count went to 14.5, the anemia gone. I had been mildly anemic for years--the suppliments really did not do much for me. Currently, I take a Centrum w/iron daily. Hope the treatments that your Dr. proposed will be helpful

[Carriefaith]

Maybe you could try eating foods that are really high in iron such as lean meats and seafood? Also, have you tryed taking iron in a liquid form? Another thing, maybe try cutting out foods that may interfere with digesting important vitamins and minerals such as caffeine and dairy. Just a few ideas!

[Canadian Karen]

Thanks Guys!

The liquid iron was the first we tried. I am eating liver till it is coming out of my batuzzis!!! She also wrote on the note to the specialist:

"despite p.o. elemental iron, is ti time for systemic iron?"

I also have been chronically anemic since I was a child. I can remember making weekly visits to a doctor when I was little and getting my finger pricked all the time (I guess that's how they tested it for kids??)

Hugs.

Karen

[Ursa Major]

Hi Karen,

your hemoglobin appears to be 114, and normal is between between 140 and 160. Every time mine went below 120 a few years ago, I'd be so weak that often I was unable to get out of bed, because my legs would simply buckle.

Your ferretin is 10, normal is between 50 and 300 (under twenty is definitely anemic, mine has now gone to 94, from a level of 4 five years ago).

Your levels are dangerously low, your blood isn't tranporting enough oxygen, starving your heart and brain of oxygen.

I have no idea of what needs to be done long term, but for now getting iron either by injection or IV is absolutely imperative. I'd opt for IV, since it will bring your iron up to normal immediately. Iron shots are painful (not immediately, but if you have two a week, like I did, and they alternate sides, you don't know which side to sit on any more in the long run).

Somehow your intestines aren't absorbing the iron you take by mouth at all, not from supplements, and not from food, either.

My problem used to be severe and prolonged bleeding (almost like hemorrhaging) during menstrual periods. Which were likely caused by low levels of vitamin K (it helps your blood to clot). Having a hysterectomy wasn't the real answer to my problems, but it sure fixed my anemia.

[Judyin Philly]

Karen

I don't know anything about your #'s but I remember some thread on here where someone had IV for anemia and there was alot of info on it.

I know you've had a busy day today but try a search with the wording of the IV in medical language and you might be able to find it. I was looking into it for info on my Mom.

I'll try tomorrow and if i find anything i'll let you know.

going to hit the sack.

Judy

[Canadian Karen]

Well I guess that would explain why she is not touching this one with a ten foot pole and would rather he take over in regards to getting my iron up. I guess considering the fact that his "official" diagnosis of me (which I am not in agreement with) is "refractory celiac sprue" with "extensive collagenous colitis", she wants to leave it up to someone much more knowledgeable about celiac and it's complications.

I didn't post this earlier (about his diagnosis of refractory. This was discussed when I went to see him the middle of January), because frankly, I refuse to either acknowledge it or accept it. He basically said that my tTg levels were well within the normal range, therefore verifying I am religiously gluten free. He also did some testing of the stool, and if I was consuming gluten somehow, some level of something or other (I forgot what he said), would be present, but it was not, so this was double verifying the absence of gluten in my system. He cites the failure of me to regrow villi, the failure to absorb still, and continuation of the diarrhea, being unresponsive to treatments, etc. The present treatment he has tried me on (for about three weeks now, is a blood pressure medication, called Clonidine) is not working either. Apparently, the main side effect of this medication is constipation, and that's what we were looking for. The thing that really sucks is the fact that I already have low blood pressure normally, so I sure have to make sure I get up slowly from a reclined position!

I will let you guys know when I call his office tomorrow what he wants to do.....

Hugs.

Karen

[Ursa Major]

Karen, what is the Clonidine supposed to be doing? It seems rather illogical to use it. Especially because low blood pressure is already slowing you down. And despite people claiming that low blood pressure is no problem, it can be a concern, too. And then to lower it more seems very irrational to me!

By the way, did you know that apples lower your blood pressure? I don't know if you eat a lot of apples, but you may want to avoid them.

Hope you get the answers you need soon, it can be so frustrating when nothing seems to be working!

[Canadian Karen]

  Ursula said:

Karen, what is the Clonidine supposed to be doing? It seems rather illogical to use it. Especially because low blood pressure is already slowing you down. And despite people claiming that low blood pressure is no problem, it can be a concern, too. And then to lower it more seems very irrational to me!

By the way, did you know that apples lower your blood pressure? I don't know if you eat a lot of apples, but you may want to avoid them.

Hope you get the answers you need soon, it can be so frustrating when nothing seems to be working!

He wanted to try this medication to see if the side effect of this medication would kick in for me, but alas, it has not.... He told me when prescribing this to make sure I don't get up too quickly or else I will be hitting the floor! No kidding!

I think he was trying this hoping for some success before we move onto other, more complicated, treatment options.....

Karen

[jenvan]

Karen-

Have you considered the SCD diet? If you haven't, you really should. You may have mentioned this, but have you ever had a follow up biopsy--did he also use that to come up with refractory diagnosis?

On iron...I had an infusion. It is really the solution for peeps with persistent anemia... I took iron pills etc, no help...just make my system even more aggravated. I think the infusion is best...you go in for one treatment, usually takes several hours. I opt for a portable DVD player for entertainment or some books etc Typically docs choose the infusion first b/c it is easier, but has a bit of a higher chance of proving an allergic reaction. They do test you before you get the full treatment though, to be sure. The other treatments take multiple visits over a long period of time. Bleh I had my infusion last march. So far my number are still normal. My TIBC has gradually gotten higher and my saturation, ferritin have gradually gotten lower...so I may need another infusion eventually. So far so good though. I have continued to get follow-up tests and have my next one in July (just got one last month). So, this does require good follow-up. Let us know what you hear.

[Canadian Karen]

Is an infusion the same as a transfusion?

Karen

[jenvan]

well, sort of, depends on who is using the word i believe the more medical term is infusion, so as not to be confused with transfusions--transferring blood materials from one person to another. in the case of an infusion, the iron has been produced, it is not coming from another person. just a big brownish bag of iron that is send into your system via IV

[Canadian Karen]

  jenvan said:

well, sort of, depends on who is using the word i believe the more medical term is infusion, so as not to be confused with transfusions--transferring blood materials from one person to another. in the case of an infusion, the iron has been produced, it is not coming from another person. just a big brownish bag of iron that is send into your system via IV

Oh okay, so just to be clear, it is not blood that has been donated, right? Can you tell I don't feel comfortable with that? I want my blood, what little there is, to stay squeeky clean!

Talked to Terry about this last night and he gave me a huge hug and said, "Hey, that's great! Now I going to have a metal-head for a wife!" As you can see, we use humour quite alot to deal with issues, better to laugh than cry!

Hugs.

Karen

[jenvan]

humor is great...i like to use that two to stay sane

yup, no blood...the iron is produced by a company, like a prescription... not taken from someone else's body. my friends were confused at first when i had the procedure and i had a few of them volunteer to donate !

[Canadian Karen]

  jenvan said:

Karen-

Have you considered the SCD diet? If you haven't, you really should. You may have mentioned this, but have you ever had a follow up biopsy--did he also use that to come up with refractory diagnosis?

He has done the colonoscopy that discovered the collagenous colitis, but he has not done another biopsy. He is going by the results of previous biopies from the other GI. He said that the results of the biopsies from the colonoscopy show that the collagenous colitis is not just spotty, it's basically from top to bottom.

When he saw I was getting visibly upset at the mention of the word "refractory", he was very quick to point out that technically, refractory only means that it is unresponsive to treatment and he said that since there was absolutely no indication of cancer seen during the colonoscopy, and on average, it could take up to 5 years from beginning of polyp to morph into cancer, I have nothing to worry about in that dept. for awhile.

I don't think I am making any sense! It was a bit difficult for me since I was in a heightened sense of fear at the time he explained it. I have since come to the conclusion that I am going to look at this diagnosis as nothing more than "you are just not responding", not "it's refractory and you are in serious trouble"! That is why I didn't even bother changing my signature to update that or anything, to me, it is business as usual......

Karen

[Judyin Philly]

keeping you in my prayers today, karen

judy

[Canadian Karen]

Well, waited very patiently for the phone call today from the doctor to tell me what he wants to do about the anemia, but didn't get the call......

I will call in the morning.....

Karen

[Carriefaith]

  Quote

Well, waited very patiently for the phone call today from the doctor to tell me what he wants to do about the anemia, but didn't get the call......

That's irritating. Yeah, I would just call them. I call my doctors office when I am expecting results and can't wait any longer.

[tarnalberry]

have they tried you on steroids yet? i understood that was fairly common practice for refractory, but i could be wrong about that...

[Canadian Karen]

We have gone through Budesonide and Prednisone with no effect.....

I just want to know how he wants to proceed in getting my iron up. If it helps me to stop feeling so absolutely exhausted all the time, then I will be a happy camper!

Karen

[Judyin Philly]

Hope you get some answers today, Karen

Judy