Iron deficiency from venesection how low is too low advice please

[Cityreach]

Hi, I have PV, recently diagnosed in June and on venesection only so far and aspirin, meds route being decided just waiting for next consultation on 24th October, my last bloods on 26th Sept showed my iron was 4.3 with the range being 11-27. I know the venesections cause the iron deficiency and understand why, I had another venesection on 6th October without a blood test, I just wonder how low is too low for Iron as I get very light headed/ dizzy many times a day only last momentarily but happens many times I have this whooshing sound in my ear in ntune it seems with heart beat that comes and goes, does anyone know how low is too low, am due to go away end on month and would like to get rid of these feelings, any advice would be appreciated

[LittleLuna]

i am about to start my first venesection in Tuesday so very interested in others views on this.

Hope you get balance right. I expect there should always be blood tests before venesection to confirm levels before they draw more blood.

[Cityreach in reply to LittleLuna]

Hi LittleLuna,

Yes there are always blood tests before a venesection it was just that my bloods were done the week before and was told to have the VS the following week were they would normally repeat the blood test on VS day but there was an issue with the analyser on the day and results were taking a few hours instead of usual 40 mins as the consultant asked for the VS from my bloods the week before they done the VS anyway without the additional blood test, I never used to feel this way and I been having VS since May its been last 4-6 weeks and increasing light headiness dizzy spells have occurred my guess is that the lower the iron goes symptoms creep in, wondering how low is too low at 4.3 when range is 11-27 is there a danger if too low

[ainslie]

it’s fine in fact better to have bloods done a few days or week before, you don’t really need to test on day of vs also. The point of the venisection is to make you iron deficient so you make less blood cells and hence lower Hct. Do you have the numbers for Hct, HgB, MCV. Also it is quite common to feel a bit up and down when you start venisecting, your body can take quite a few months to get used to them. It’s prob wise to check blood presssure is okay and discuss all of it wit Haem or Haem nurse

[Cityreach in reply to ainslie]

Hi Ainsle Hct was 44.3 HB 131 on 26th when consultant said VS next week because I had climbed from 40.4 back up to 44.3 whilst no VS over 4 week period that HCTwas in range, so they wanted VS i have had around 10 + VS now but its lately the dizziness light headiness and ear whooshing has started and wondering if its because my iron is so low, just wondering how low is too low for iron level

[ainslie in reply to Cityreach]

certainly at 44 a VS is a good idea, do you know your MCV that’s the size of your red cells, that’s how most haems monitor your iron deficiency. A normal level is 80-90ish if not venisecting but as you get more venisections the MCV will drop and when most people get down to MCV in the 60’s they need much less venisections because your red cells are getting starved of iron effectively. Most people need quite a lot of venisections initially until MCV drops then most settle down to about one every 3-4 months. It took me quite a few months to get used to them as the body needs to adjust, others feel better from the first venisection but others find them hard to tolerate. I hope that helps but feel free to as more if needed.

[Cityreach in reply to ainslie]

Hi Ainslie, MCV was 83 on 26th Sept from the full blood count

another separate iron & iron building blood test was done same day 26th said

iron level 4.3 , 11-27 is range range with ! after the result

Total iron binding capacity 69, 41-77 being the range

Trasferrin saturation 6, 9-47 is the range with ! After the result again

This particular iron test has not been done since 23rd May where results were

Iron level10.91!

Total iron binding capacity 51

Transferrin saturation 21

So its quite a drop in iron level from may to September

10.9 to 4.3 when level is 11-27 so am low in that iron test just trying to work what is causing this dizziness light headiness which have had for good few weeks now along with the whooshing in ears, have never experienced it with earlier VS, I have fluids replacing the bloods at same and have always felt ok byt this dizziness etc is getting to me a bit

[ainslie in reply to Cityreach]

although your iron levels in the blood are lowering it’s not lowering the MCV enough yet, if you are getting fluids when VS it’s important the fluids go in after the VS and not during or before because if not you are venisecting diluted blood which is a bit pointless and means you would need more venisections. Re your symptoms, some may be VS related but maybe not so if it were me I would get them checked asap.

[Cityreach in reply to ainslie]

Thanks ainslie, I have seen before what you say about diluted blood being VS but they dont do it that way they set the fluids running then start the VS and they both finish same time, I did ask that question ages ago they said its fine how they do it, I have emailed my CNS this morning will see what she says when comes back, thanks for your time I will let you know what they say

[Cityreach in reply to ainslie]

Hi ainslie, just to update you as I said I would, haem team don't think symptoms are related to PV or iron and to refer back to GP again it was GP who told me could be iron related, to be honest GP has had no involvement since was referred to heamotologist feel hit brick wall now, which dues nothing for my symptoms thanks for listening and responding

[ainslie in reply to Cityreach]

Unfortunately it’s quite common for one doc to say it’s the others responsibility, I have found in that situation that being persistent and not taking no for an answer can work, tiring as it can be. Was it Einstein who said success was 10% inspiration and 90% perspiration, I hope you succeed.

[hunter5582]

The answer to your question is a bit complex. there is more than one type of iron measurement to be considered.

• Serum iron. This test measures the amount of iron in your blood.

• Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.

• Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.

• Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.

• Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.

webmd.com/a-to-z-guides/iro...

I expect you already know that the point of the venesection is to make you iron deficient without inducing anemia. Looking at your erythrocyte levels (HGB, HCT) is the best way to determine iron that is too low. For a male, my doc does not want to see HCT drop much blow 40%. For a female this number would be lower. It is best to discuss the acceptable range for erythrocytes with your MPN Specialist.

It is also very important to let your care team know what you are experiencing. Anemia can certainly cause significant symptoms. Iron deficiency in the absence of anemia can also symptoms. i experienced decreased energy, decreased concentration, alopecia, and reactive thrombocytosis. Ultimately, the iron deficiency symptoms were worse than the PV symptoms for me. That is why i started on the IFNs.

It seems you are experiencing what sounds like pulsate tinnitus along with some other concerning symptoms. This certainly needs to be followed up with your MPN care team.

Please let us know how you get on and what you learn.

[Cityreach in reply to hunter5582]

Thanks Hunter for your reply, your right it is very complex. There is so much to try to learn and take in on the start of this journey, I will message my CNS today

[Cityreach in reply to hunter5582]

Hi Hunter just for update I didn't really learn anything that will help my symptoms today, CNS spoke with heam team they say they dont think its related to PV or iron and to go back to GP and to stay hydrated which i already do 2L a day of water & anthing else i have , I already went to GP first on Friday who told me could be low iron causing symptoms so now feel like no one is that interested and its like going round in circles

[hunter5582]

That most certainly is frustrating to get bounced from pillar to post. I would think about getting a second opinion at this point. Perhaps your GP can assist you with this. The symptoms you are reporting could be iron deficiency related as your GP suggested or could be PV related, or something else entirely. You certainly deserve to get an answer to your very reasonable concern about the symptoms.

Hope you get answers soon.