Ferritin going down very slowly.Alcohol?

Allergies, blood and immune system
1

Since around the 400 mark my ferritin has been going down very slowly.

14/3/17,13th venesection,SF 408,TS 88%,

26/4/17,16th v/s,SF 327,TS 45%,

19/6/17,20th v/s,SF 305 TS 52%.

       At my last appointment in March the assistant gastro told me I could drink up to 21 units of alcohol per week (yes,I know they are the old guidelines).I'm due to see the main gastro next week,who is more zero tolerance about alcohol.Could it be that even such relatively small amounts support ferritin levels or has anyone else had it going down like this,an average of 15 per treatment?

     I have mild arthritis and had a slight cough the day my last bloods were done.

2

I drank several glasses of red wine every night and my ferritin went from 1887 to 54 in 17 weekly phlebotomies. I don't think alcohol has any effect on it.

3

Thanks Chris.I'll be armed if he tries to blame it on that,then.Has anyone else got a contribution?

4

Only from my own experience. Both my GP and my gastro were concerned that I had haemochromatosis and I had all sorts of tests. So I stopped drinking and it came back to a normal reading.

I will say, I was a heavy daily drinker, no where near the weekly guidelines. It may be that it is down to the individual or maybe it affects all to a certain extent or if you moderate it, you'll be fine.

5

Thanks RHGB.The gastro didn't seem to think it was because of alcohol.Because my platelets were a bit low(about115,000 and rising) and my spleen is at the upper end of normal,I.e.not excessively enlarged,he has decided to do an endoscopy to check for varices,something you know about.

    My GP says he's mystified as he doesn't think it warrants it.My ALT has been 21 for months,even though I drink moderately (I know yours appears normal despite cirrhosis but I'm guessing it would shoot up if you drank,so I'm assuming I don't have liver disease.).My GP also says I haven't got it.Presumably the gastro doesn't think so either as he says stick to 5 pints a week.If he'd said we'll do this to rule varices out I would have understood.Perhaps he didn't mean it but I thought he was talking like I may have them.

6

Most of what came about them finding out about me, was from brain haemorrhage. Until my legs started to giveway, I only then started to feel bad. This was caused by high BP (I knew I had it and had not bothered with the tablets for some time) caused by a mixture of stress and too much alcohol. My point being, that until that bleed on the brain, no one was the wiser.

My platelet level is about the same as yours, the reason for which I had quite a few platelet/plasma transfusions in hospital to try and stablise me. My low level is down to my liver, normally low platelet level is down to the liver not being able to absorb vitamin k and therefore produce the clotting proteins.

You talk about your spleen being enlarged, have you had an ultrasound? If the gastro wants an endoscopy, it is because there is something that he wants to check, naybe a pattern he has seen before, a hunch or just to be on the safe side. I would take the endoscopy, it is very good for having a general look inside you, not just for varices. Two tips, one, if you ever get told by a gastro (or any consultant) for this sort of procedure, always ask why, ask them what they're thinking. Secondly, if you have a gag reflex, go for the sedation, the scope is about as thick as the forefinger.

I would doubt you have varices, because as far as I know, they only come with severe liver problems. They are caused by portal hypertension in the liver. On the bright side, mine had gone on my last gastroscopy, so non drinking plus a special beta blocker for it, does seem to do the trick.

I must admit, I am trying to think why your gastro wants to check for varices, but I would certainly welcome an endoscopy. I would also want an ultrasound if you haven't had one. I got a print out on the day, telling me there was no sign of varices, but mild gastritis. If you're not give anything, might be worth asking for a copy.

Please do come back and let us know the results.

7

Hi Eric. I started at a very high 4000 and am down to 305. The ironic thing is that it took me forever to clear the 400 range. My drops were maybe 10 points, one time only 2 points. Then I cleared the 300's (almost) in two sessions. This happened while taking wheatgrass, which has given me mixed results. If you want to try it, use powdered form with food. There's more clinical support for it than other non pharmaceutical choices, but my anecdotal evidence and the small trials only give some hope, nothing I would swear by yet.

I had to stop drinking so I can't speak to that.

8

Thanks Bruce.I'll look into the wheatgrass if there's no change soon.I mentioned IP6 to the gastro but they don't seem to know anything about herbal treatments.

9

Sorry for my late reply but the email went straight into my spam tray.The latest bloods show my platelets now in range at 156,000(the figure I quoted before was from 1-2 years ago).My spleen was at the upper end of normal and all other organs looked okay.The consultant told me that with Haemochromatosis you have an ultrasound every year.This will be my third in 18 months.I think he had decided to do this procedure before he saw me so didn't listen to my protestations that I didn't have liver disease.I will get back to you after the appointment.

10

One thing he did say was try to keep to 10 units of alcohol per week,half of what his colleague said.This was purely from a liver health perspective.Perhaps they really think everyone should do this.As you mentioned you like a drink,have you had any adverse effects and does your gastro or GP try to restrict you?

11

Finally had the gastroscopy yesterday.No varices or h pylori but mild gastritis and hiatus hernia. They gave me a printout without asking.Ultrasound next week so will chat to them and get report.

12

Had the ultrasound.All okay.The spleen is still the upper end of normal but is one centimetre smaller than last time,possibly because my ferritin is lower.My liver has a good texture and my kidneys are nice!

13

I'll echo this. I was a heavy drinker as well, toned it down a bit during treatments but didn't see much of a result. I quit drinking and my ferritin levels took a nose dive down to normal levels. It may very well depend on the person, but for me, no booze helped a ton. My doc told me 2 drinks a sitting, 3 days a week. Unless they are yards or fishbowls who the hell wants to stop at 2? Haha. Try chilling on drinking for a bit and see if it helps

14

Sounds good.