Iron for 17 days- 1st Blood Test results

12-04-2008, 09:27 AM

I saw my hematologist on Wednesday morning. This was my first follow-up since I started the iron supplements 17 days ago. Unfortunately I have a very bad head cold (perhaps even a sinus infection) and right off the bat she said that the blood tests would not be very accurate because I of whatever inflammation was in my body due to my cold. Sure enough she just called me this morning to tell me that my Ferritin levels went from 5 to 20 but she said that is probably not a real reading. My Iron Saturation went down from an 8 to a 7 but she said that is not a significant drop. She didn’t tell me what my TIBC or Iron is. I'll have to get the report.

At the appointment she only had some results because not all were done yet. Warning! I’m going to whine! I specifically asked if I could come the day before to have my blood drawn and was told yes. However, when I went in Tuesday morning at 7:00 am before work the tech said she couldn’t take my blood because she didn’t have a “slip” and couldn’t check on the computer. UGHHHH! So frustrating. Wouldn’t it make sense to have the blood test done the day before so at the appointment you could have an intelligent conversation based on the results.

My hemoglobin was 11.6. Prior results were: Nov 13 = 11.4, July 23 = 11.6
My hematocrit was 37.9. Prior results were: Nov 13 = 37.2, July 23 = 35.6.
At my physical in December 07 my HGB was 13.0 and my was 39.0.
My MCH is still low at 25 has been for all 3 tests. Last December it was 28
My MCV is 83 up from 80 in november and 77 in July. Last December it was 85

The doctor still does not know what is causing my iron deficiency - she called it microcytic anemia. . She has ruled out a GI bleed since all the GI tests were negative for bleeding. She doesn’t think I have a malabsorption problem. She alluded to the possibility that I could have a blood vessel (she called it an occult AVM) somewhere in my body that is intermittently bleeding. She also thinks the IDA may be due to the fact that I lost 52 pounds – but that happened 2 years ago so I don’t know why it is just showing up now as a problem. So I don’t have any definitive answers. The only good news was that my protein levels (IGG) were normal – I was concerned about this because both my father and mother were/have been diagnosed with multiple myeloma and it was first caught due to abnormal blood tests done at their yearly physicals.

The doctor wants to see me in on month and thinks that I will need to be on the iron pills for at least 6 months. She also told me on the phone this morning that she wants me to come pick up a 24 hour urine test. My Creatinine, BUN and GFR are abnormal????

Well that’s my news. My best to everyone!

12-04-2008, 01:34 PM

a blood test that fast after just starting iron? i would think is a waste of time and also probably sucked out any red blood cells you were building why wouldnt the dr wait a month or two? six months of iron pills? lol thats what theyll tell you, ask anyone here it is for the rest of your life or your numbers will fall again. im not saying it will be as high in mgs but im sure youll be taking them forever good luck

12-04-2008, 09:26 PM

Susieq14, hang in there. I know it's frustrating. I have blood levels that are very low and I feel like crap everyday. I am so chronically fatigue and lately very short of breath. The bad thing is I just lost my health insurance so now I can't see any doctors.

I wish I could see my hematologist. And iron really does not do much from what I understand because it takes years to bring it to normal levels. This is why my hematologist was considering starting me on IV iron. And now I don't know what I'm going to do since I have no health insurance.

12-04-2008, 09:59 PM

Susieq14--Your doc is right, infections and inflammation can give a falsely elevated ferritin reading. But, I will hope that this is a true reading for you

.

For my blood labs my Hematologist has it down to a science. The night before my appointment my lab is faxed to the blood lab and waiting for me the next morning before my appointment. I get my Stat labs done, walk over to the building, and by the time it is my turn they have the results, other than ferritin which takes longer, and I call in the next day for the results. I was very impressed by this routine. I wish more doctors would do things like this when people are suffering with colds and such instead of waiting a couple of days for results. That is frustrating when you are told to go to the lab and they are not ready for you.

So is she doing further testing for the AVM, wasn't she going to do an MRA or something? That is excellent news that your IGG is at normal levels!!!!!

I also did the 24 hour urine testing, they were looking for AI diseases as a cause of my anemia. It looks like you are getting better news. When I was ill my liver enzymes were elevated for many months. They never did find a cause for this either. I think that it was due to the high dose iron, but they say no. Sometimes when you are ill these things go up and down and then return to normal. I hope this is the case for you too. Keep us posted. FLFLOWERGIRL

12-04-2008, 10:13 PM

YvetteD--I'm so sorry that you have to deal with no insurance. I was also in between insurance when I was ill and it's a hard situation to be in especially when your ill. My suggestion to you would be to start on high dose iron if you are not already. The higher the dose the better it works for people like us. I took 300 mgs of elemental iron daily for almost a year considering the times that I was unable to take iron at all. It does take a year or more on oral iron to replete the iron stores, you can however bring the levels up to range which is considered safe. This also keeps the Hgb from dropping (no anemia) as well. So then you are building ferritin over time, but most people get along fine at this stage other than fatigue if you over do it. Hopefully you are able to absorb iron. Best of luck to you too. FLFLOWERGIRL

12-05-2008, 08:56 AM

Quote:

Originally Posted by FLFLOWERGIRL

YvetteD--I'm so sorry that you have to deal with no insurance. I was also in between insurance when I was ill and it's a hard situation to be in especially when your ill. My suggestion to you would be to start on high dose iron if you are not already. The higher the dose the better it works for people like us. I took 300 mgs of elemental iron daily for almost a year considering the times that I was unable to take iron at all. It does take a year or more on oral iron to replete the iron stores, you can however bring the levels up to range which is considered safe. This also keeps the Hgb from dropping (no anemia) as well. So then you are building ferritin over time, but most people get along fine at this stage other than fatigue if you over do it. Hopefully you are able to absorb iron. Best of luck to you too. FLFLOWERGIRL

Flflowergirl, I appreciate all the suggestions you offer. Sometimes I don't have all the answers and don't know what to do because I'm so confused. I am on the iron (Repliva) supplements prescribed to me by my hematologist. But the problem is she discovered my body doesn't absorb any iron at all. She said it goes right through me. I was discovered to have anemia back in 2006 when I had an accident that required me to have surgery. I was told back then. I've been thinking lately about applying for social security disability and I was just made aware that chronic anemia is one of the SS disability impairments listed here in Florida State. Do you think I should speak to my hematologist and tell her what I feel? Is a doctors note required for applying? Because I'm not working right now because I physically just can't.

12-05-2008, 09:50 AM

Thanks Ladies for the comments and encouragement and the opportunity to share and whine! It is really helpful!

I feel kind of bad whining because I don’t really feel all that awful from the IDA like some of you and I have only just started down this road and have not been dealing with the IDA as long as you all have. But if you guys are correct, I guess my turn is coming! And I hate the thoughts of taking these iron pills for forever. Number one they are expensive and I’m still waiting to hear about my appeal to the insurance company to cover them and number two it is so hard to coordinate when to take them before or after meals or other meds. I now it is not that big a deal compared to what some folks have to deal with. Like you Yvette, I’m soooo sorry that you lost your insurance – that is not good news. I hope things get better for you. I would definitely recommend that you ask your hematologist for advice and to write something to include when you file for SSI. I don't know the rules for that but I would guess a doctor's note would help and not hurt. Perhaps the doctor might know about some way that you get can medical care without insurance. You have my very best positive thoughts.

I hope nothing is “discovered” as a result of the 24 hour urine test. The hematologist did not say how you could look for an AVM. She did not order an MRA. She did write in her “office note” that perhaps I should have another upper endoscopy. Actually I want to have that myself but my GI did not feel it was necessary because she did one in March 08. The one in March was done because I wanted a follow-up to the one done in September 07 when she saw some intestinal metaplasia, low grade dysplasia and polyps in my stomach. She didn’t think it was needed but I fussed and she gave in. All she saw were polyps in March but I would like a follow-up sooner than the 3 years she recommended. I’m also going to have to fuss a little because she found a colon polyp while doing my colonoscopy in October and in her letter she recommends a follow-up in 7 – 10 years. I had a c’scope in December 06 and that polyp was not there so I am not waiting for 7 years. So frustrating to have to be your own doctor without ever gone to medical school!!!

Okay I will sign off and stop whining and wish you all a great day – It’s Friday and that should count for something!

12-05-2008, 10:02 AM

yvette i am on ssd they will need documented proof of what is going on with you, a specialist is a must!be prepared for the first denial it may take up to 2 1/2 yrs good luck

Iron for 17 days- 1st Blood Test results

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