Ferritin again

[Porphyriamaniac]

Ferritin has jumped up again 3 months after last treatment, need 2 bags blood out 🙄, if this is every 3 months my veins will be caput, theyre already scarred and are rubbish to start with, treatment takes ages because blood is thick, I'm effing knackered, balled off, even my toenails have gone lumpy n weird, I think down to some mineral deficiency or another from being bled dry. I know there's worse things, sorry for whinging, I just assumed itd be an annual/twice yearly thing, as I supposedly don't have haemochromatosis. Haemotologist just says it's the nature of the beast as to why it's risen, that's not a good enough explanation for me, as most of you know, I need to know the crack. Anybody know about ferritin rising naturally without inflammation? Googles not being kind in this instance. Cheers for listening, Stacie. Xxx

[GrandmaDylan]

Hi Stacey, I'm so sorry for your ongoing health issues. My ferratin is really low and causes restless legs which drives me crazy. I'm beginning to lose confidence in the medical profession as I've had different diagnosis with different liver specialists. I'm seeing my new hepatologist on Tuesday as mine has now left the hospital Trust I was being treated at. I hadn't realised that you have been told you don't have haemochromatosis. Don't they know why your iron is so high? I hope you get the treatment you deserve. X

[Porphyriamaniac in reply to GrandmaDylan]

Hi grandma D, have they still not given a definitive diagnosis then? My hep Dr just left too, I've no idea who I'll be seeing. My condition, porphyria, causes iron to build up in the liver, attached to pigment cells called porphyrins, these cause symptoms. Once they'd taken the excess iron along with porphyrins, I assumed porphyria would be in remission and I either wouldn't load or would load slowly, which is what's suggested, my ferritin needs to be kept at 50 or below for on going remission. It's all a bit complicated, I've been lucky that my liver is ok, but im annoyed at his explanation as to why it's risen, before I could ask anything he had me out the room n down to infusion unit for treatment. I was negative for the CY gene so they never tested for other haemochromatosis genes, of which there are a few. Maintenance in haemochromatosis usually, is blood out every 3 months or so, this is why I'm questioning it, as I've loaded in that time. I hope this all makes sense, and I hope they get you a concrete diagnosis and treatment soon, the not knowing is the worst! Xxxx

[Hidden]

My apologies for the long detailed reply however I believe that if you are going to look at something it is better to do it well which can sometimes result in a lot of detail.

Here in Australia the normal level for ferritin is 30-300 ug/L. My last ten blood test results for ferritin were 535, 440, 422, 436, 390, 397, 435, 385, 437, 390. All above normal but not high enough to warrant doing anything. All of my other iron study values (Iron ,Transferrin ,TIBC (Cal) & Saturation) have always been roughly in the middle of the normal range. If I gave blood to lower my ferritin level (which is only one type of iron) I'm afraid it would lower some of the other iron values to unhealthy low levels & produce unpleasant side effects (e.g. fatigue if my iron level dropped too low) & my ferritin would just rise back up above normal anyway once the blood I gave was replenished by my body. I've tested negative to haemochromatosis.

Needing to keep your ferritin at an artificially low 50 ug/L or below to get remission from porphyria seems odd to me. Dr Melissa Palmer in her book 'Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease' mentions giving blood to reduce iron levels if other measures to control Porphyria fail. She may be referring to the iron that is an important component of haemoglobin, the substance in red blood cells that carries oxygen from your lungs to transport it throughout your body, for which the normal level is 5.0-30.0 umol/L. Ferritin is another type of iron—a blood cell protein that contains iron which is measured separately & for which the normal level is 30-300 ug/L. If some of your other blood test iron studies values (Iron ,Transferrin ,TIBC (Cal) & Saturation) as well as ferritin are above normal I can understand giving blood to lower them but Melissa Palmer makes no mention of giving blood to get ferritin level below 50 (which is very low) to control Porphyria.

The only mention Dr. Palmer makes for Porphyria in her book is in Chapter 10 UNDERSTANDING HEPATITIS C. Dr. Palmer states that the hepatitis C virus (HCV) is the primary cause of Porphyria with alcohol, excessive iron intake & estrogens making it worse. She says that treating the hepatitis C virus with the drug interferon reduces or eradicates the hepatitis C virus & then the Porphyria goes into remission. Have you been checked for hepatitis C? Note that her book is now at least 15 years old so more has probably been learned about Porphyria since the book came out.

Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease:

"Porphyria cutanea tarda is a skin abnormality due to accumulation of porphyrins, substances involved in making blood, under the skin. Porphyria cutanea tarda usually manifests as blisters on the back of the hands and on the forearms, neck, face, and other sun-exposed areas. These blisters bruise and bleed easily, especially when subjected to mild trauma or sun exposure. Other manifestations of Porphyria cutanea tarda include areas of increased or decreased skin pigmentation and increased hair growth, known as hirsutism. Blood tests will indicate an iron overload. Patients with Porphyria cutanea tarda often have high sugar levels, diabetes, or fat deposits in the liver known as a fatty liver. In addition to the causative factor of the Hepatitis C Virus, alcohol consumption, excessive iron intake, and estrogens may precipitate Porphyria cutanea tarda in predisposed people.

Treatment consists of avoidance of all alcohol, estrogens, and iron supplements. If iron overload is present, foods high in iron content (such as red meats and foods fortified with iron, such as some cereals) should be avoided. If symptoms persist after these measures are taken, phlebotomy (removal of blood though a vein to reduce iron levels) should be started. Drugs such as chloroquine or hydroxiquin, used to treat malaria (a parasite), may also be beneficial for treatment of Porphyria cutanea tarda. Improvement or total remission of Porphyria cutanea tarda will normally occur when treatment of the hepatitis C virus (HCV) with interferon reduces or eradicates the virus."

[Porphyriamaniac in reply to Hidden]

Hi Edward, Ive been checked for hep c and every other possible contributing factor, I don't have any of them. With all due respect, I trust my porphyria specialist in knowledge and treatment of my condition. Some information you've copied here is correct, but some contradicts the many studies I've read and medical advice I've been given. Keeping ferritin below 50 is standard treatment for pct where iron stores are high, regardless of tibc and transferrin saturation, pct is not a skin abnormality or caused primarily by hepatitis c (☹ I find these parts upsetting), it's a metabolic disorder and iron levels aren't always high, regardless of dr Palmers statements. Though i respect and value your input and Dr Palmers expertise as a gastro Dr, one reason i post here aside from support is that maybe others with my condition might see it, id hate for them to read misguided information presented as fact via Dr Palmer, who i assume doesn't fully understand the mechanism behind pct and the effects of venesection on it, if she did, she wouldn't suggest diet as treatment maybe don't quote if it's 15 years old? Only a porphyria specialist is properly knowledgeable in this area, my haemotologist really struggles as does my hepatologist. But for clarity,I'll try and explain. Pct, is a chronic hepatic porphyria (there are different types,erythropoietic/neurovisceral) all are errors in metabolism, all missing a specific enzyme in haem synthesis. The ferritin measured in my blood correlates with my iron stored hepatically, porphyrins are bound to this iron In my liver(they give haem it's red colour), venesection gets rid of the stored iron along with the attached porphyrins, restoring correct cellular metabolism of Uroporphyrinogen decarboxylase(the enzymatic step that is missing in haem synthesis in pct) and it's precursors and successors, halting back log of these incomplete haem synthesis products, which are what causes my symptoms, no excess ferritin In liver = no excess porphyrins to leach out into my blood and affect me cutaneously and normal synthesis should resume. My maintenance ferritin levels are set by my Drs according to the literature and study's done on this, as long as my haemoglobin levels are steady( a measure of anaemia unrelated to stored iron/ferritin only the transport of it), venesection is carried out, I trust that literature and my Drs regarding my treatment, though I am unhappy with haemotologists response to my ferritin rising quickly, I will try to rectify that at next appointment. I tried a low iron diet prior to treatment, not only is it nigh on impossible to implement, when asked, the Dr told me it was not recommended as I could get malnourished/anaemic with low haemoglobin levels, making me unable to tolerate venesection, it made no difference to my iron stores either. The anti-malarials are for people that can't tolerate venesection and are extremely hepatotoxic, so much so, I would be prescribed half a tablet a week, it's not been recommended and neither would I take it.

I hope that clarified it a little, it's a confusing condition poorly understood even by the best haemo/hep/gastro Drs.

Thanks again for your input,

Stacie

🙂

[Hidden in reply to Porphyriamaniac]

Thanks for your reply. I didn’t realise that you had researched your condition to the extent that you have. I’d do the same if I had the condition. It’s a pity the cause in your case is unknown but I’m glad that it’s not hepatitis C. In her book Dr. Palmer attempts to cover just about every type of liver pathology so it lacks the sort of in depth analysis you have done. By all means be guided by your specialist who I’m sure is up on the latest knowledge about your condition. Hopefully others with your condition will be able to contribute based on their experience.

[Porphyriamaniac in reply to Hidden]

Im sorry if it came across in any way offensive, I know you were trying to help and I do value anybodys efforts and input. I didn't realise research had moved far in 15 years, my specialist told me most of it is based on old studies as theres no money in it, it clearly has though, primarily from hep c!? 😱 Ive had to research it to get answers Edward 🙂 as i said the haemo/hep can't answer me mostly.

[Hidden in reply to Porphyriamaniac]

You didn't come across as offensive. On the contrary it was refreshing to see someone who researches their condition the way that you have. I'd do exactly the same thing.

I don't believe in the saying 'ignorance is bliss'. Knowledge is power makes more sense. If I had known what I now know about the liver I'd have cleaned up my lifestyle a lot earlier but my GP made light of abnormal blood test values like a low platelet count & in my ignorance I trusted his judgment too much. Now I know more about the liver than he does & when I spoke with the gastroenterologist I saw he realised that I was not the typical patient & that I knew quite a lot about the liver. He gave me the impression that he was happy to have a patient like me who wanted to be actively involved in his treatment.

[Porphyriamaniac in reply to Hidden]

Knowledge definitely is power, especially with your health, you only get one life, doing all you can to look after it makes sense aswell. He sounds like a good Dr, some Drs are threatened by it I find 😁

[Porphyriamaniac in reply to Hidden]

Your ferritin levels may be normal for you? the guideline levels are just that, some people may be naturally higher or lower??

[Hidden in reply to Porphyriamaniac]

Quite possible.

Another possibility is that I have arthritis & a painful spine & neck plus I exercise pretty much every day so my ferritin level could be a little above the normal range because there's inflammation always present in my body. The recommendation for ferritin levels like I have is monitoring & as long as they don't rise do nothing. The gastroenterologist I saw did suggest giving blood to lower my ferritin but if it resulted in my other iron study values dropping too low I could find myself tired & unable to exercise. A ferritin level like my last one of 390 is no big deal. I'm more concerned as to why my platelet count is often below normal despite my liver being in good shape according to all of the tests done.

[Porphyriamaniac in reply to Hidden]

It could be inflammation, for sure. If you give blood though, you will generally get a drop of 30-50 ug/l in your ferritin per bag removed(everybody's different). This would take it down to nearly normal, I would personally do this. Only with aggressive de-ironing like mine will you get fatigue and such, a bag out weekly/fortnightly, you need to be prescribed this. But giving blood, one bag of blood every 12 weeks as is allowed by law(uk), should take your ferritin down to nearly normal and help save lives. They won't take your blood if your haemoglobin levels are low, so should be no fatigue. I dont know much about the platelets except what theyre for I'm afraid 🙂.

[Hidden in reply to Porphyriamaniac]

I've considered giving blood however I was infected with TB as a child & I couldn't give blood at a normal blood bank because my blood contains TB antibodies. Special arrangements would be required for me to give blood at my local hospital & it would then have to be thrown out. I'm not sure it would be worth the hassle of contacting the hospital & arranging for this to be done.

[Porphyriamaniac in reply to Hidden]

That's exactly what happens to mine, straight in the bin! I have mine out sat alongside chemo patients and people having blood put in, which makes me realise what a waste it is, it is incomplete blood I suppose. It's up to you, It may be worth trying if they're willing to do it, might get it down to normal, the nearer normal the better really, so a lot of the literature suggests, even good for the heart and metabolic syndrome I read somewhere or other recently. 🙂