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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> CH and Anaemia Question
        
(Message started by: LeLimey on Dec 5^th, 2007, 5:32am)

Title: CH and Anaemia Question
Post by LeLimey on Dec 5^th, 2007, 5:32am

Hello everyone,

I had a bit of a nasty surprise really as my blood results are deteriorating rapidly again. Usually when I get bad my hits cease (I put it down to my calcium levels etc being so low) but this time the hits are incessant. I put the fact I'm feeling so ill down to the effects of the hits so as I said, it was a bit of a shock when my bloods were so wafty.

This time my iron levels are very low as are my B12 and folic acid which have always been okay in the past. My doctor said that my iron levels for a woman should be between 16 and 11.5 and mine are 7.9

Now I know iron is needed to carry O2 around the blood so could this be why my hits haven't stopped this time? I realise I'm clutching at straws but you never know what may be instumental in thinking up possible treatments so I thought I'd ask!

For the record I am taking 1800 mg of iron a day which I know sounds excessively high but its been prescribed that high precisely because of my absorption problems. I alwaystake it WITH folic acid and Orange Juice too as both are supposed to help you absorb the bloody stuff UGH!

I'm telling you, I've really had enough of this game now, can we play something else please?!

Helen

Title: Re: CH and Anaemia Question
Post by aloneuk on Dec 5^th, 2007, 7:49am

Helen [smiley=hug.gif]

Tams levels were very low to and she had trouble absorbing aswell, she takes iron and things seem a little better, could you not get the b12 shots ?

red bull has loadsa b12 in it too ;;D

I dont really know what else to say other than you know where i am and we are all rooting for you, if theres anything i can do

hugs to you.
Ike and clan

Title: Re: CH and Anaemia Question
Post by LeLimey on Dec 5^th, 2007, 8:53am

I'm having b12 injections again too - joyful things that they are! I'm knocking back the old red bull shite at a far greater rate than I like admitting too.. and you KNOW I hate that gagging stuff!

I tohught it might be a stretch it sort of a question but it was worth asking!

Oh well - back to me jobs! ::)

BTW - do you want any GF stuff? If you're coming next week I'll get you some

Title: Re: CH and Anaemia Question
Post by LeeS on Dec 5^th, 2007, 11:43am

Have you tried sticking spinach up your arse? ;;D

Seriously though, as before, I bet you (a case of Meurseault) that the B12 injections help significantly with the hits; and that your iron and calcium levels will subsequently get better.

Not sure what we can do about all your other problems though ;)

-PeeWee

Title: Re: CH and Anaemia Question
Post by HeadhurtinMama on Dec 5^th, 2007, 12:14pm

Helen,
I have issues with iron absorption as well. When mine got that bad, I saw a hemotologist and had IV iron infusions. Each one took 8 hours and it looked like a big bag of rust going into my arm, but I got better much faster than I would have trying to take the iron orally.

Bridget

Title: Re: CH and Anaemia Question
Post by Maffumatt on Dec 5^th, 2007, 12:47pm

Wishing you'd catch a break Helen.....

Title: Re: CH and Anaemia Question
Post by Monty on Dec 5^th, 2007, 1:10pm

What form is the iron? Ferrous sulfate is the most common supplement for women that need iron, but it is poorly absorbed. I hope they have you on the chelated stuff ... ?

Also, ferrous sulfate (by not being absorbed and generating free radicals on its way out) can damage the digestive track. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=9989688

Title: Re: CH and Anaemia Question
Post by LeLimey on Dec 5^th, 2007, 3:39pm

Hi Monty thank you so much for your concern. Thats moved me to tears (which is going to really freak those who know me out big time!)

I've had huge problems with absorption this year, not just of iron. My doctors are very careful about every damn drug they give me which is why I can't buy anything OTC - everything I use comes from them or I ask their approval before buying it and asking permission to shop does not sit well with us females as you probably know!! ;)

I've had the bags of rust as Bridget describes it before but before it got as low as it is now. Last time I had a transfusion I was having half a pint of blood every 12 hours to avoid too big a shock to the system. I don't know because I was more pissed off at a hospital stay than paying proper attention but I think I got blood as it would be less traumatic than iron alone at that stage but I don't know - I'm guessing.

I'm "happy" enough about the way they are dealing with the whole iron/potassium/PTH/calcium/phosphate etc etc etc thingy Right down to zinc is screwed at the moment LOL

I was just thinking (too much probably) and wondering if poor quality blood, specifically re iron as the others have never shown an issue within my CH before - could e why my hits haven't decreased as the other symptoms have ramped up this time. It kind of made sense in a convoluted way that if iron is needed to carry O2 around in blood and Iron is deficient then so would be O2 and thats the stuff I use to abort CH!!

I promise not to think again ;)

Thanks Bridget as well, I'm very grateful for the suggestions 'cos at least I have something I can ask about now!

Helen

Title: Re: CH and Anaemia Question
Post by Annette on Dec 5^th, 2007, 3:57pm

Helen, so sorry to hear you are getting hit hard and getting sick at the same time. It must be awful !

Iron can be given as IM injections ie shots into your muscles as well, your GP can give 1 shot every week or every fortnight for you. Its not as quick as the iron infusion but it will save you a trip to the hospital.

The only problems with iron injections are firstly they hurt like hell, secondly they may leave a stain under the skin at the injection site of a brownish colour due to the colour of the iron. Otherwise they give you a dose boost and since you are absorbing them through the muscles any digestive problems wont affect it.

Sending hugs and prayers, take care of yourself hun :-*

Title: Re: CH and Anaemia Question
Post by LeLimey on Dec 5^th, 2007, 5:10pm

Annette I've had iron injections before - I actually don't think they hurt as much as the B12 but they still hurt like hell! I'm not sure why they aren't considering those to be honest, you know I prefer anything that avoids trips to the horsepiddle LOL

I don't know - but I'm guessing the extremely low rates of everything else (bar PTH which is somewhere over the Atlantic) is the reason. I don't know all of the results 'cos I was only talking to the doctor over the phone but calcium is 1.9 (has been lower!) and my phosphate was below the level of the test. When I see the Prof I usually write them all down myself. I'm seeing him on Monday so hopefully between me and Paul we can remember most of them!

I will update when I get back, I have to admit to being a bit nervous to be honest. I know I've overdone it this week because I was decorating and putting up Christmas decorations etc but I've given myself a really big fright this evening and I swear I'm taking it easy from now on!

Helen

Title: Re: CH and Anaemia Question
Post by Annette on Dec 5^th, 2007, 5:23pm

Helen, you can ask your doctor to give you print outs of all of your blood test results, old and new, so that you can study them if you wish, or at least compare them to see how they have progressed over time. If you keep a headache diary you can cross check with the blood test results and see if there is any pattern. Maybe you will see that each time your iron or whatever else drops what sort of effect they seem to have on your headaches.

If there are too many results, you can ask the print outs of those relevant ones or only those that had been abnormal. On those lab results they always highlight the ones that are abnormal and then on the right hand side they will give you the normal range so you can see very quickly how bad yours are.

Good luck with the specialist appointment. I hope they have the answer for you. I will pray for you Helen, that you will get better soon.

Paul, please take good care of her.

Title: Re: CH and Anaemia Question
Post by Grandma_Sweet_Boy on Dec 5^th, 2007, 6:17pm

Lord Helen - if anyone should catch a break, it's you.

Sure wish I could do something besides send you a hug and some wishes for better health.

Hang in there.

Hugs
Carol

Title: Re: CH and Anaemia Question
Post by sandie99 on Dec 6^th, 2007, 4:03pm

Helen.... [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Lots of vibes & prayers are on their way from us. I hope that they can finally figure out what will help you for good.

Sanna

Title: Re: CH and Anaemia Question
Post by DennisM1045 on Dec 6^th, 2007, 4:42pm

Hi Helen,

I didn't see this earlier. Vibes are coming your way hon. Try and get some rest if you can.

-Dennis-