new to all this.....
Posted , 6 users are following.
Hi,not been officially diagnosed but consutant seems pretty sure,my iron levels are 2000,I had first venesection last friday morning and by the afternoon felt awful,I felt drunk and really out of it and unbelievably tired which continued all the following day. Sunday felt quite alot better. is all this normal and will it get easier as so far been given 10 weekly appointments. Originally went to doctors thinking I had IBS had blood test and high iron levels came back and going back through previous test it had been 500 in 2008 and nothing was mentioned about it. Looking at other peoples experiences makes me concerned about any lasting damage. Stomach issues are ok now after cutting back on alcohol,sorry that makes me sound like I have a problem but I do like a couple of glasses of vino from time to time. Anyway, any advise or pointers would be much appreciated.
1 like, 6 replies
GillianA Clare1966
Posted
Hi Clare,
My advice would be to inform your doctor as soon as you can about how you felt after your first phlebotomy, and definitely before you have your second phlebotomy, in case she or he wants to make changes to your phlebotomy orders.
That said, here are some general ideas that might or might not apply to your situation –
Do the numbers 2000 and 500 refer to your ferritin (in ug/L)? Ferritin does go up when body iron goes up, but it also goes up with inflammation, so a high ferritin could be due to high iron or due to inflammation or due to both. If someone doesn't have inflammation (i.e., their c-reactive protein blood test – also called a CRP test - is normal), then a high ferritin means high iron. However, you mention IBS - if by that you mean inflammatory bowel disease, then inflammation may be the reason, or part of the reason, for your high ferritin.
Possible reasons for feeling awful after a phlebotomy:
1. (unlikely but maybe worth asking about?) - IF your ferritin is up ONLY because of inflammation and your iron levels are actually low, having a phlebotomy to take iron away could make you feel worse rather than better.
2. If "drunk and really out of it and unbelievably tired" includes high heart rate and feeling woozy when standing up fast and maybe a bit nauseated, then you might not have had enough fluid on board before having blood removed. They tell you to be well-hydrated before having a phlebotomy and they're not kidding. One sign of being well hydrated is passing good volumes of pale urine - dark urine means you need to drink more water.
3. Based on my own experience – nobody told me to make sure I had enough salt on board before a phlebotomy, but if you are on a low-salt diet or if you suffer from chronic diarrhea you may need to increase your salt intake the day before a phlebotomy. It's actually easy to be on a low-salt diet if you cook all your own food from scratch (using no pre-processed ingredients). In my case, once I clued in that I had to increase my salt intake before being bled, I stopped feeling yucky and woozy after a phlebotomy and started feeling *better* afterwards, an effect that lasted for about a day or so.
4. Not having had enough to eat before a phlebotomy. A good solid “stick to your ribs” type of meal a couple of hours before being bled really helps; i.e., protein, fat, fibre, complex carbs, and no rapidly absorbed carbs (sugars, starches like flour or white rice or potatoes).
Another fluid hint is to take an electrolyte drink of at least 500 cc along with you when you go for a venesection, so that as you’re being bled, you can put 500 cc back in to help replace the blood being taken out of your arm. You can use commercial electrolyte drinks or mix your own. I mix my own because I think it tastes way better - 250 cc (1 cup) of REAL juice to give potassium and a bit of sugar, 250 cc water, and 0.625 cc (1/8 tsp) salt. I mix this up in a bottle and take along with me to drink during the phlebotomy. Juices that are good sources of potassium include mango, guava, papaya, prune, orange, pineapple, grapefruit, carrot, tomato. “Cocktails” that are mainly sugar and water don’t count even if they have a bit of real juice added in. Coconut water is another good source of potassium, if you like the taste of it.
I hope some of this is helpful -
Clare1966 GillianA
Posted
Thanks alot for your reply,it's really helpful and I will take it on board this Friday and I will let you know how I get on. The IBS stopped as soon as cut down on acidic drinks so I now don't think it was related as my stomach has been fine for over 3 weeks. Thanks again.
Clare1966 GillianA
Posted
Hi,took on what you said about hydration and made sure I had loads to drink before and after this week's phlebotomy and hey you were right,feel fine,bit tired yesterday afternoon but nothing like last week,and levels have dropped by about 400 so things seem to be progressing nicely. Thanks again.
GillianA Clare1966
Posted
That's great to hear - thank you for letting us know that hydration worked!
lynnsk1 Clare1966
Posted
Hi Claire, in January I was diagnosed GH & I’ve had 37x weekly VS . I was 2000 with TS 105%, (caused liver cirrhosis through undiagnosed HH/GH) but my iron count last week was 93 & TS 36% so now I must have blood tests to check to see if iron stays at 50. & have VS when necessary. There is hope for all. As long as you gave good veins and you take it easy, exercise and eat sensibly yours will come down too. Now I’m just hoping my Liver will not get any worse , fingers crossed all good . P.s I enjoyed my bubbly but I don’t drink at all now. It’s easy when you want to live. Good luck Claire. X
ellen12819 Clare1966
Posted
Hi Clare,
I have read your replies and Gillian is always spot on with her knowledge they are a smashing group and are giving you good advice. I have a pint of water with half a lemon every morning before i do anything. On venesection days, I have two pints plus milky tea with my breakfast it makes my head clear and my blood flow quickly. My previous woozy sleepyness doesn't happen at all now. Good luck.