Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 I have my ferritin checked cause hemochromcytosis is in my family and I am a carrier..my ferritin levels are always normal...and I had the rash the high fevers the exhaustion,,the arthritis.and about 5 rheumy's have said it is stills... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 --My ferritin was normal also, but I have all the other symptoms so my dr said you dont need to have them all Love Pat from Ma- my ferritin levels are always normal...and I had the rash the high > fevers the exhaustion,,the arthritis.and about 5 rheumy's have said it is > stills... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 --My ferritin was normal also, but I have all the other symptoms so my dr said you dont need to have them all Love Pat from Ma- my ferritin levels are always normal...and I had the rash the high > fevers the exhaustion,,the arthritis.and about 5 rheumy's have said it is > stills... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Dear LYNN,I keep getting my Ferritin checked every month..the last was 5000...my doctors say I still have stills and it is very active....Hope you are not stills...Please take care.God blessEugenieFrom: Lynn D [mailto: ldudette@...]To: stillsdisease@...: Tue, 14 Oct 2003 20:02:59 -0500Subject: FerritinHow many out there have had their ferritin levels checked? The doctor I saw today said you must have an increased ferritin for Stills?Lynn---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.525 / Virus Database: 322 - Release Date: 10/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Dear LYNN,I keep getting my Ferritin checked every month..the last was 5000...my doctors say I still have stills and it is very active....Hope you are not stills...Please take care.God blessEugenieFrom: Lynn D [mailto: ldudette@...]To: stillsdisease@...: Tue, 14 Oct 2003 20:02:59 -0500Subject: FerritinHow many out there have had their ferritin levels checked? The doctor I saw today said you must have an increased ferritin for Stills?Lynn---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.525 / Virus Database: 322 - Release Date: 10/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 wrote " I was told by a rheumatologist who specializes in Stills that once you are being actively treated for Stills, your ferritin levels may go back to normal. " Yes leslie this is true im glad you said it, I forgot about it but just like the sed rate your ferritin can return to normal once the disease settles down, ferritin seems to react to inmflammation GO DAWGS !!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 wrote " I was told by a rheumatologist who specializes in Stills that once you are being actively treated for Stills, your ferritin levels may go back to normal. " Yes leslie this is true im glad you said it, I forgot about it but just like the sed rate your ferritin can return to normal once the disease settles down, ferritin seems to react to inmflammation GO DAWGS !!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 et all, I am finally reading a few of the most recent messages between coughs. My doctor told me the same thing and [i think] said he was not sure that every SD patient had elevated ferritine levels. We were going over my records trying to find what my level had been. He also said that the ferritin level is raised usually only in the beginning of SD. I will clarify that with him the next time I see him, make sure I understood correctly, lol. I know he has at least five SD patients. Another interest to me is that and Liz both had negative pregnancy tests. With my last pregnancy I also never got a positive blood test, we finally gave up testing when the doc could hear the baby's heart beat. I KNEW from early on I was pregnant regardless of the negative test. That there are others in our group with this experience is interesting and I wonder if it has anything to do with inflamitory diseases. Does anyone know how common it is to get neg. pg test when there is actually a viable fetus?? Interesting questions, take care, Louise. Jay wrote: > wrote " I was told by a rheumatologist who specializes in Stills > that > once you are > being actively treated for Stills, your ferritin levels may go back to > normal. " > > > Yes leslie this is true im glad you said it, I forgot about it but > just like > the sed rate your ferritin can return to normal once the disease settles > down, ferritin seems to react to inmflammation > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 et all, I am finally reading a few of the most recent messages between coughs. My doctor told me the same thing and [i think] said he was not sure that every SD patient had elevated ferritine levels. We were going over my records trying to find what my level had been. He also said that the ferritin level is raised usually only in the beginning of SD. I will clarify that with him the next time I see him, make sure I understood correctly, lol. I know he has at least five SD patients. Another interest to me is that and Liz both had negative pregnancy tests. With my last pregnancy I also never got a positive blood test, we finally gave up testing when the doc could hear the baby's heart beat. I KNEW from early on I was pregnant regardless of the negative test. That there are others in our group with this experience is interesting and I wonder if it has anything to do with inflamitory diseases. Does anyone know how common it is to get neg. pg test when there is actually a viable fetus?? Interesting questions, take care, Louise. Jay wrote: > wrote " I was told by a rheumatologist who specializes in Stills > that > once you are > being actively treated for Stills, your ferritin levels may go back to > normal. " > > > Yes leslie this is true im glad you said it, I forgot about it but > just like > the sed rate your ferritin can return to normal once the disease settles > down, ferritin seems to react to inmflammation > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Hi Lynn, Judy here I have my ferritin level check eveyother month with my regular blood work. I am one that my ferritin level was extremely low (2ml) this way below normal. But my doctors still insist that it is Stills I am just one of the few that don't have high ferritin level. Judy, Collegeville, PA > How many out there have had their ferritin levels checked? The doctor I saw today said you must have an increased ferritin for Stills? > Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 I have a low ferritin level as well. The docs use that to query the diagnosis of Stills. Actually, none of them can make their minds up, particularly since I was in hospital and they couldn't decide why orally I had a normal temp, yet with a tympanic thermometer I had a fever! I am considering leaving my body to medical science. Will they pay me up front, do you think?! C 2 On 4 Nov 2003, at 19:00, Judy Moyer wrote: > Hi Lynn, Judy here >   I have my ferritin level check eveyother month with my regular > blood work. I am one that my ferritin level was extremely low (2ml) > this way below normal. But my doctors still insist that it is Stills > I am just one of the few that don't have high ferritin level. > Judy, Collegeville, PA > > > > How many out there have had their ferritin levels checked? The > doctor I saw today said you must have an increased ferritin for > Stills? > > Lynn > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Thanks Judy!! Re: Ferritin Hi Lynn, Judy here I have my ferritin level check eveyother month with my regular blood work. I am one that my ferritin level was extremely low (2ml)this way below normal. But my doctors still insist that it is Stills I am just one of the few that don't have high ferritin level.Judy, Collegeville, PA> How many out there have had their ferritin levels checked? The doctor I saw today said you must have an increased ferritin for Stills?> Lynn> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Mine was 28,000 at my onset but that didnt last long, then it went down to 5 which I think the normal is 45-150 or something like that so anyway mine dropped below normal fairly quickly after that first test. GO DAWGS !!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Mine was 28,000 at my onset but that didnt last long, then it went down to 5 which I think the normal is 45-150 or something like that so anyway mine dropped below normal fairly quickly after that first test. GO DAWGS !!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Hi: (Nelly, , & Rich) Thanks everyone for " putting a bee in my bonnet " regarding possible reasons for my low ferritin and to Rich for helping me to understand anemia. Knowledge is power! Best Regards, Teena On Mon, 06 Feb 2006 23:00:52 -0000 " " <usenethod@...> writes: > There is no doubt that iron security is a part of antibacterial > immunity. We keep almost all our iron complexed to other molecules, > but pathogenic bacteria are still able to acquire some of it by > releasing, then resorbing, iron-binding molecules of their own > (siderophores). > > I have heard from an unreliable source that immunoactivation > (specifically, activated macrophages) can cause significant > sequesteration of ferritin out of circulation. Please note I > personally have no clue whether this is true. But pubmed should be > able to tell you. > > I tend to agree with Nelly that persistent bacterial infection is > the > likeliest cause for most CFS cases. Many CFSers are greatly helped > by > antibacterial treatment, tho many are not. Personally, based on my > reading of anecdotes, I tend to suspect that a heavy combo regime > involving a nitroimidazole drug is far better than, for example, > just > taking doxy. It seems to me that just taking doxy is rarely > effective > at all, tho there are a lucky few. > > > > > > > Teena, > > > > Have you (or your doctors!) ever thought of trying to find the > CAUSE of your ferritin being low, and getting low again after your > iron stores have been repleted? > > > > My ferritin was extremely low (7-range 20-200).Taking iron if your > > ferritin is low because of a chronic infection will only feed the > bugs (the ones that thrive on iron). The only mode of intervention > that made it rise significantly was...taking antibiotics, not iron. > > I rest my case. > > > > Nelly > > Re: /Re: Ferritin > > > > > > Hi : > > > > Since right before I was diagnosed with CFS, I started to have > issues > > with my ferritin levels being very low. It is my understanding > that > > ferritin levels relate more to the body's iron stores. My Hct > has > also > > tended to be low; being in the range of 32-35 (which as a female > > makes me > > anemic). I have seen the diagnosis on my chart of " anemia of > chronic > > disease " . I guess I am wondering if a significant number of > other > PWCs > > have low ferritin also and what would be the mechanism of > " anemia > of > > chronic disease " . I am currently receiving IV iron therapy > (INFED) to > > build my iron stores back up. This has happened twice. The iron > therapy > > seems to help some when I have gotten it -but not as much as one > > would > > expect. I have tried some other things (DHEA x 1 month, Trans-D- > Tropin > > for two months). So far, nothing has really seemed to have much > effect on > > me. It gets discouraging & expensive. > > > > Teena > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi Val, I stopped mine for 6 days before both my latest test and the previous test but this time it dropped quite a bit...... odd. Luv Bella > > Just wondered how long you all stop taking iron meds for when you have ferritin blood tests? I have just not taken it on the blood test day, but perhaps I should stop a week or so before? > > Val > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Co-incidentally I have just come back from the doctors. He said my ferritin was OK at 55. He said that they get concerned if it is below 20. I said that I heard it should be 70 - 90. He said nobody here thinks this and asked who told me. I just said that I had heard it somewhere. He told me I was wrong. I asked if I should take some iron (bearing in mind my haemoglobin is marked Low by the lab) and he said no, because I could get iron overload especially as he would expect me to have a fatty liver because I am overweight. Lilian I'm really confused now. I have just had a full blood count and my ferritin levels checked. I was told that everything is fine. My ferritin levels are 24. Is this good or bad? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Hi Jus - the answer is bad. As I have just written, ferritin levels for a woman should be around 70 to 90 or even higher. Having a low ferritin for some time will mean you may well go anaemic and you need to build up your iron. Look at the recommendation I wrote to Winston. Luv - Sheila Hi, I'm really confused now. I have just had a full blood count and my ferritin levels checked. I was told that everything is fine. My ferritin levels are 24. Is this good or bad? Many thanks Jus No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1332 - Release Date: 17/03/2008 10:48 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Hi Jus, Did you get a test range?, but this does sound low Subject: Ferritin Hi, I'm really confused now. I have just had a full blood count and my ferritin levels checked. I was told that everything is fine. My ferritin levels are 24. Is this good or bad? Many thanks Jus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Hi , No, I'm now waiting to get my private FT3 results and then I'll be seeing the GP again armed with info It's getting him to listen that is the problem. If he's not prepared to do anything, I'll then be seeking advice of one of the private doctors recommended. I think it's awful how we have to diagnose ourselves! Jus Hi Jus, Did you get a test range?, but this does sound low Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 HI Lilian This is an interesting article with good references: http://www.clinicalanswers.nhs.uk/index.cfm?question=326 http://www.hoslink.com/LabResults/refranges.htm - this gives the reference range for men and women. http://www.goodhope.org.uk/departments/pathweb/refranges.htm - this shows an even higher range. You should get the reference range for Ferritin that your local laboratory uses Lilian, as they are all different. Attached is the article in our files where it recommends where a ferritin level should lie. I can't find any specific papers unforotunately, but not really looked for these for very long. Somebody else may come up with something. Luv - Sheila Ferritin Can someone please give me some references, articles etc. where it says that ferritin should be 70 - 90. Mine is 55 and the doctor says this is perfectly all right and when I said I thought it should be between 70 and 90 he asked for my sources. I guess if we ask the doctors for their sources when they say T3 is irrelevant or Armour is not stable, they are entitled to ask us for ours when we make statements. I would therefore like to have these to hand when I next see him, which is likely to be sooner than later because I have just finished a course of antibiotics and am still not right. Lilian No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.0/1342 - Release Date: 25/03/2008 10:26 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Lilian http://www.nlm.nih.gov/medlineplus/ency/article/003490.htm Normal Results Return to top Male: 12-300 ng/mL Female: 12-150 ng/mL Note: ng/ml = nanograms per milliliter The lower the ferritin level, even within the " normal " range, the more likely it is that the patient does not have enough iron. best wishes Bob > > Can someone please give me some references, articles etc. where it says that ferritin should be 70 - 90. Mine is 55 and the doctor says this is perfectly all right and when I said I thought it should be between 70 and 90 he asked for my sources. > > I guess if we ask the doctors for their sources when they say T3 is irrelevant or Armour is not stable, they are entitled to ask us for ours when we make statements. I would therefore like to have these to hand when I next see him, which is likely to be sooner than later because I have just finished a course of antibiotics and am still not right. > > Lilian > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thanks Sheila. The most interesting one, which I would like to take to the doctor is the attached one, however that does not say who wrote it and where it is from and without that it will have no significance. Lilian Attached is the article in our files where it recommends where a ferritin level should lie. I can't find any specific papers unforotunately, but not really looked for these for very long. Somebody else may come up with something. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 http://www.goodhormonehealth.com/ It's from here Lilian. Luv - Sheila Thanks Sheila. The most interesting one, which I would like to take to the doctor is the attached one, however that does not say who wrote it and where it is from and without that it will have no significance. Lilian Attached is the article in our files where it recommends where a ferritin level should lie. I can't find any specific papers unforotunately, but not really looked for these for very long. Somebody else may come up with something. No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.0/1342 - Release Date: 25/03/2008 10:26 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Thanks Sheila - spot on. I will have some printing to do when I get back later today. Lilian http://www.goodhormonehealth.com/ It's from here Lilian. Quote Link to comment Share on other sites More sharing options...
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