ferritin
During a pulse I had blood work taken not related to the pulse or my MSi. Just odd timing. The results came back to show very high ferritin levels. 1903 which is in fact exceptionally high.
Does anyone know if doing flagyli, zithi or doxyi can cause this type of odd blood work result? I'd like to investigate further but as this was done privately through BUPA and I don't have enough of an allowance on my policy to allow further testing it would have to be a GP referral which would allow me to look into this more deeply.
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Most likely culprit is Hemochromatosis....a genetic disorder that causes you to absorb much larger quantities of iron. The iron is stored in the tissues as ferritin and can, over time cause damage to the organs.
This is a common disorder, especially in people of celtic origin. I am assuming you are in the UK, since you talk about BUPA.
I have this disorder, and when I was diagnosed 4 years ago via blood tests and then genetic testing, my family were all tested and my father and brother were also positive . I found that once I was treated by phlebotomy, many symptoms that I had previously put down to Lyme etc. improved.
http://www.haemochromatosis.org.uk/
www.irondisorders.org
Although this is one of the commonest genetic disorders, it is estimated that only about 10% of people with it are every diagnosed. Doctors still have many misconceptions about it, like women can't get it, and young people cant get it, and carriers can't get it.
The blood test that you need is a FULL iron panel, which includes Ferritin, Serum Iron and Transferrin saturation.
Check out the web site before you go see your doctor. Most GPs will never have seen a case .
I have heard of hemochromotosis. At one stage I'd hoped I'd had it and the whole MSi thing was just a big mistake lol. I understand sometimes it can cause neurological problems.
But as part of the same set of blood work all my other iron levels were normal, serum iron is smack in the middle of the normal range. I don't see transferrin on the list of results however. I should make an appointment with my GP and at least get the blood work re-done to see if the ferritin has come down now that I am not on a pulse. I will do that and let the board know about this. Its helpful to know if flagyli can cause this as at least someone else doing one knows that it may cause wacky blood work results and its no cause for alarm.
I have come across high ferritin with inflammationi, but never THAT high. maybe Flagyli can do that?
In HHC circles, levels above 1500ng are associated with tissue damage and usually warrant a liver biopsy.
When I was diagnosed, my Iron was 'normal' and my Ferritin was about 350 ....but the Transferrin saturation was almost 100% and I needed about 18 Phlebotomies to get the levels down to acceptable. That is why you need the FULL iron panel, including TS% done.
Are you a blood donor, by any chance? Not likely, I know, since you are ill.
Now I am a bit more concerned. I thought not having high iron serum let me off from hemochromtosis. I will speak to my GP this week for sure and get the full iron panel done. Not not a blood donor, with MSi I don't think I can be one...I'll update of course now that am reliant on the NHS could take a while!
Do your homework first so that you can plead your case ! A Ferritin
level that high is not normal and merits investigation.
Hemochromatosis has to be top of the list in the UK...at least to be
excluded. Look at you family and their medical issues and see if any of
that fits.
You could ask for a referral to a Hematologist, but could get the
bloodwork done up front so that you can take it with you. You might
want to contact a local HHC group to get a recommendation for a
doctor. Sometimes this is checked by Hematologists, sometimes
gastroenterologists ( because many people present with Cirrhosis or
need a liver biopsy )
I did get the genetic test and I have 2 copies of the bad gene C282Y
....so I am C282Y/C282Y. But I load fairly slowly. My brother is only a
carrier, C282Y/ - , and yet he was the one with Ferrtin of around
1800 and had a liver biopsy, and ,after getting his levels down, he
now needs a maintenance Phlebotomy every 3-4 months . The
"specialists" say that if you are only a carrier of the gene, you will not
load iron. My father has a copy of the bad gene, and one of the not so
bad gene, C282Y/H63D, but he has been a blood donor for about 35
years and so, was effectively treating himself. After a couple of Phlebs,
he is now not loading iron at all !
Although they check for the 2 or 3 most common HHC genesi, there
are clearly many more that affect iron loading, as my family picture
shows.
This is a common genetic disease......it is called The Celtic Curse for a
reason......thought to have originated in Ireland.
Having the genetic test is important because of figuring out who else in
the family might be affected and whether this might be passed on to
children.
I am from the UK, but live in Canada now, so can't help you out much
with the doctor suggestion.
Get copies of your blood work . www.toomuchiron.ca has a good
Forum if you need to ask others their experiences.
Iron Defence Witholding Mechanism :
http://www.ncbi.nlm.nih.gov/pubmed/18546145
an update on my situation. I went to my GP and gave her the blood work results from the private work done through my private medical insurance. I did not suggest hemochromotosis but she did and said its the first thing that should be looked at. She sent me off for more blood work and wrote on the forms for me to bring to the hospital -hemochromotosis? and requested that I fast to check if iron deposits were accumulating on my liver and pancreas.
My ferritin is still rising apparantly as I've just gotten back from the follow up visit. Its now 1973. But all other iron tests are normal, Fe binding Sat %, etc.
So she has said it does not point to hemochromotosis but has requested a visit with a specialist. I've yet to receive the letter so not sure which type, I should have asked. But I did ask if not hemochromotosis than what else could create such very high ferritin levels but normal iron measures. She mentioned porphyriai. I have heard this term mentioned on this site but not gone further than to wiki it.
I am very concerned now. The first set of results were done while doing a pulse. I did mention the possibility here that it could be the flagyli causing this results. But this time I purposely avoided all of the abxi protocol to make sure that this was not the issue. Up to the 2nd set of blood work, I hadn't touched an abxi for well over a month maybe two. Now back on the abx but not sure if I should be?
Does anyone understand how porphyria could inter-link with MS? My MS had been stable and non-active (well at least no relapses) for 4 years after visiting Dr Weldon and starting the protocol. I had felt so well for so long that frankly I gave up on the protocol and had half convinced myself it was just concidence that maybe I was lucky enough to have a benign form of MS. But since September 2010, I've lost vision in one eye, and had 2 other relapses involving numbness and sensory syptoms. I also had a two day period of such extreme vertigo I could not lift my head without feeling nauseous. For that reason I opted to re-start the whole process. Now however am feeling quite confused, as to what the heck I should be doing anymore!
I was diagnosed today with Type 4 hemochromotosis and had straight away my first venesection to remove blood to reduce my ferritin levels. The type I have means while my ferritin is super high my actual iron levels are just within normal still.
Should I give up on the antibioticsi? I may have a clash of diseasesi here. MSi and HH (just learned that acronym today). Apparantly I have to cut way back in Vit C as it build up iron and that's not what I need. Has anyone heard of someone with MS getting HH as well? It seems mad to have both and Type 4 apparantly is a rarer type of it. Type 4 has only been discovered according to my consultant in the last few years as researchers have understood better the human genome.
Will a CBC reveal Hemochromatosis? if so what would an abnormal reading be?
Thanks
DAILY: NACi 2400MG , DHEAi sublingual , CoQ10 200 mg, vit D3 2,000 IU, multi vits, Folapro, Doxyi 200 mg. 2 or 3 PER WEEK Astaxanthin, Azithromycin 250 mg,B12, Coffee retension enema, Flagyli 6 day pulse, Thyme Thujanol twice a week
I am so glad that you have an answer at last. Have you had investigations to check out your liver etc. to see if you have damage from the high Ferritin?
http://ironic-health.com/articles-of-interest-on-hemochromatosis/type-2-...