Posted , 4 users are following.
Tomorrow should be the day for my weekly venesection, but this afternoon the hospital phoned to say my hb is too low and they will look at a second blood test in three weeks and see if the letting can begin. Can any one tell me what a normal range is? Today hb 1s 114. Will my iron spike because I am not loosing blood? And is there anything I can do to stop this happening again.
1 like, 10 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
GillianA ellen12819
Posted
Hi Ellen,
Probably the best way to know the normal range is to ask for a copy of the lab report - that will say what the normal range is for the lab that tested your blood.
If your hemoglobin before a phlebotomy is usually higher than 114, then the most likely reason that your hemoglobin is lower now is that your body is still busy dragging your extra iron out of the cells where it's been hiding and making it into new red blood cells. Therefore, your iron won't be spiking, because it’s being pulled out of your iron overloaded tissues and put into red blood cells ready to be removed with your next phlebotomy.
If, like me, you have the kind of iron overload associated with a high ferritin but a low-normal or even low transferrin saturation, you're probably going to find that the closer you get to being de-ironed, the longer it’s going to take for your hemoglobin to come back high enough for your next phlebotomy. I ended up having to wait five to six weeks between phlebotomies at the end of being de-ironed.
However – there’s another possible reason for your lower-than-usual hemoglobin result, if the sample was taken by fingerprick and not by drawing a blood sample from your arm.
When it comes to fingerpricks, I've found that if my hands aren’t warm enough or if a fingerprick is too gentle, then my finger won’t bleed fast enough. If this happens and the person testing my blood “milks” my finger (squeezes it to make it bleed faster), the result will be a hemoglobin measurement considerably lower than it should be. I think this is because the squeezing squeezes out more extra plasma than it does extra red cells, so the hemoglobin gets diluted. I do two things to prevent this. First, I wear warm clothes and then walk briskly until I feel almost sweaty and my hands and fingers are nice and warm. Then if my finger doesn’t bleed with sufficient enthusiasm with the first fingerprick, I ask that a second and more enthusiastic fingerprick be done.
I hope some of this is helpful -
ellen12819 GillianA
Posted
Hi Gillian,
You are very knowledgeable and thank you for responding. I still don't have my copy of my Dna or blood work results, which one do I need? But I do know on 25th Aug my Hb was 148 SeFn 551 and TS 72%.
Today my Hb is 114 SeFn is 306 my TS number they didn't give me over the phone. My blood was tested from my arm after the venesection and the blood flow was rapid, they were startled at the speed the bag filled. Sorry if I appear ignorant It is all still very new to me.
GillianA ellen12819
Posted
Hi Ellen,
You want copies of all your lab reports.
You want your DNA report so that you can see what gene mutations were tested and what your results were. There are many mutations that cause iron overloading, and often standard medical testing looks for just a few of the most common ones.
You want your blood work results so that you can see what the normal ranges are and so you can track what is happening to your hemoglobin, ferritin, and transferrin saturation over time.
Just to make sure I'm correctly understanding your question about your hemoglobin drop –
· You have been having weekly phlebotomies starting August 25 (Friday), so your phlebotomy on Oct 3 (Tuesday) would have been your sixth phlebotomy?
· And your hemoglobin always gets checked from your arm either after the phlebotomy or after they get the needle established but before drawing off the blood to fill the bag?
· How much blood is taken at every phlebotomy?
I'm asking because the testing routine used on me was different - I started with weekly phlebotomies and had to go to the lab a few days ahead of time to get my hemoglobin and ferritin tested.
Also - I’m pretty sure I have a different type of hemochromatosis than you do because my highest transferrin saturation was 44%.
However, just in case my experience is helpful: I started with a hemoglobin of about 124 g/L and a ferritin of about 1400 ug/L. My hemoglobin hung in around 124 g/L until my ferritin was down to just over 300 ug/L. At that point, my hemoglobin went down and hovered around 115 g/L – except once when it went to 107 g/L and my next phlebotomy was cancelled and rescheduled. As I mentioned above, the closer to being de-ironed I got, the further apart my phlebotomies had to be to give my hemoglobin time to get back up, but that’s probably because of the type of hemochromatosis I have.
Eventually, after I had a total of about 7500 cc blood removed, my ferritin got down to 50 ug/L and I went on to maintenance to keep it there. Since I went on maintenance, my hemoglobin has gone back up and has been around 125-130 g/L ever since.
My suggestion is to ask your doctor to tell you what your hemoglobin and ferritin will do as the extra iron is removed - that way you'll know what to expect and you won't be worried.
ellen12819 GillianA
Posted
You are very helpful. I apreciate your time.The surgery are leaving me copies of my blood and Dna in the morning so I hopefully can dissect them and understand a bit better.
ellen12819 GillianA
Posted
Okay... I have my reports but don't know what I am looking at.
Serum folate 5.1
Ferritin 530
eGFR 82
That is some of my blood work results, below was an attatchment sheet which said:
Ferritin and iron up
HFE GENOTYPE (HAEMOCHROMATOSIS)
HFE genotype.
This patient is homozygousfor the p. Cys282Tyr pathogenic variant.
All of this comes under the heading of confidential pathology report.
The doctors secretary (G P) said this was all she had, I dont think this is the DNA report?
There are more results on the top sheet but didn't know which ones to give you.I appreciate any help you can offer.
Ellen
GillianA ellen12819
Posted
I’m sorry for the delay – my computer was having difficulties. (I think it’s fixed now!) I’ll just go over the lab results you have mentioned:
Folate (also known as folic acid and vitamin B9) is a B vitamin. It is called “folate” from the Latin “folium” for leaf, because it is a vitamin found in leafy greens. The lab I use (in Canada) reports folic acid in nmol/L. Your lab report should give you the units your lab uses and the range they consider to be normal. Folic acid is usually measured if homocysteine levels are high or if red cells are bigger than usual (called macrocytosis), or if hemoglobin is low, because low folate can cause all of this. Low B12 can do the same, so B12 levels and folate levels are usually measured together.
Ferritin is reported in Canada as ug/L (micrograms per litre). For people with no iron overload and no inflammation, the normal range for adult women given by the lab I use is 15-247 ug/L. As you know, a ferritin of 530 ug/L is high. Ferritin can be high because of excess iron (getting rid of the excess iron fixes high ferritin caused by excess iron) or because of inflammation (getting rid of excess iron won’t fix high ferritin caused by inflammation) or both.
You don’t give the results for your serum iron level or transferrin saturation, but I assume that at least one of them is up, based on the attachment sheet saying, “Ferritin and iron up.”
eGFR, aka “estimated glomerular filtration rate” is a measure of kidney function – the glomeruli are the little filtering units in the kidney and the GFR measures how fast they process fluid. In Canada, eGFR is reported in mL/min (millilitres filtered per minute.) My lab gives a normal range for eGFR of greater than 59 mL/min for an adult Caucasian female my age and weight based on measuring my serum creatinine (in umol/L). However, the Kidney Foundation of Canada says that a normal eGFR is from 90-120 mL/min. So the normal range varies depending on the lab – your lab report should say what they consider to be the normal range for eGFR.
Having the Cys282Tyr mutation of the HFE gene on both chromosomes (also called HFE C282Y homozygous) means that you have the most common genetic cause of iron overloading.
Other lab tests that you might find helpful would be a sedimentation rate (“sed rate”) and/or a c-reactive protein (CRP), either or both of which can be used to find out if inflammation could be a problem.
Measures of red blood cells that are usually tested and might give some helpful clues as to why your hemoglobin went down include red blood cell count (the number of red blood cells in a litre of blood), and the mean cell volume (MCV, the average size of the red blood cells), mean cell hemoglobin (MCH, the average amount of hemoglobin in a red blood cell), and the mean cell hemoglobin concentration (MCHC, the average concentration of hemoglobin in a red blood cell.)
I do think it would be helpful to make an appointment with your doctor to go over all your blood test reports to explain why the tests were done and what the results mean, because your doctor should have all your medical information.
I hope some of this helps -
ellen12819 GillianA
Posted
Hi Gillian, I hope you are keeping relatively well? Your help has been invaluable. Monday I had my bloods tested and today I had my first Venesection in six weeks, because of becoming anaemic... the weekly vens were stopped.
My Iron has dropped 300, the biggest drop since this began in July. They seem hopeful that with my way of eating and your advice with hydration, rest, and big feed before the bleeds, again your advice we may have a formula that works. I am feeling optomistic and my head has been clear for nine days straight. People/ patients on here really need to know how important these things are, again I wouldn't have known any of it if it wasn't for you and the advice gleaned on this site. Thank you fingers crossed I keep on the right track ' ding ding!' Going down. *crosses fingers*.
GillianA ellen12819
Posted
I am so glad to hear this - thank you for letting us know!
Best wishes,
Gillian
Clare1966 ellen12819
Posted
Hi Ellen,I've just had same thing happen to me,my levels started at 1995 and after first ven dropped to 1575,after 3 more had a call from hospital saying they were making me anaemic,and to miss next appointment, I'm concerned now because I was starting to feel really good. Did you get sorted and how are you feeling now?
ellen12819 Clare1966
Posted
Hi Clare,
I was scared and thought numbers would climb. I drank a pint of blood temp water with a splosh of lemon juice first thing, it cleans your liver and helps with the running of blood. I watched my diet as if my life depended on it. Was feeling a little breathless and tired by ten but better than i had for years. I had the bloods done two days before the venesection and was scared. At that appointment my numbers had dropped dramatically. I have /am having the best *fingers crossed * two weeks ever. My mind is sharp, i have been able to do most things and the last 2 days slept until 8 something i don't ever remember. The doc said if they take me to the edge of aenemia they could force the tissues to let old iron go. They have left me 3 weeks this time, then a fasting blood test on 14th and a venesection the following wednesday. So farso good. My fingers are staying crossed incase its a fluke. Xx good luck i will keep you posted as I hope you do me.