Is there a difference between US guidelines and U.K. Guidelines for treatment of PA? Also iron treatment question...

[CH52]

This may be a stupid question but here goes! Do doctors in United States abide by or refer to the U.K. guidelines since this is where treatment for Pernicious Anemia originated? My oncologist/hemotologist did his internship in London but was a US citizen and is in practice here. He is following the U.K. Guidelines but if he ever leaves the area I would be forced to go to another physician. That thought scares me. I've come so far to getting my strength back and feeling almost normal with my current treatments so sure hate to start all over with someone new who isn't with the program!!!!Just curious.

2nd question: My new Medicare insurance and supplement (I turn 65 in August) which starts August 1 will only pick up 80% of cost of injections and infusions. B12 injections no problem but I will be getting my last iron infusion this Friday (July 28th) as on the current insurance it's picked up 100%. The infusions average 1200.00 so that would be a hefty copay each month that I can't afford. My doctor said he totally understood and I can take iron tablets but he will keep close eye on my numbers and if my numbers go too low he'll give me the occasional iron infusion to boost my system. Do tablets normally work adequately enough?

[Cobalamin4Life]

Hello, CH52. I am so glad you have a competent doctor and he is on top of your PA. I'm in the US also and to be honest I don't know what guidelines the doctors here follow. (I actually felt lucky to find a doctor or two who even understood what PA was.) The guidelines here don't seem to be the same as the UK guidelines and the UK has a longer acting form of b12 (hydroxycobalamin) that we cannot get here. My b12 saga has been a bit of a bumpy road. I have found NIH guidelines here: nhlbi.nih.gov/health/health... .

Regarding iron supplements, maybe this is useful info. I had to bank several units of my own blood about 20 years ago for major surgery. I was able to build my blood back up between appointments at the blood bank by using an iron supplement (a prescription) called Niferex Forte and eating iron rich foods. I was doing everything that I could to avoid a transfusion of anyone else's blood besides my own. I ate a lot of spinach salads with cooked beef liver and raisins, that was my own "secret recipe". I could not tolerate the over the counter supplements. I'm not a doctor or medically trained person, so I can't really advise regarding the necessity of future iron infusions. I've been functioning with a ferritin level between 3 and 8ng/mL (12-150ng/mL is normal for females) for at least the past 10 years and only advised to take iron tablets. I've had a very long history of iron deficiency anemia, at least 20 years. I'm still trying to find an iron supplement that I can tolerate or absorb with PA since they haven't prescribed the one that worked before yet, I'm not certain that I've gotten the best medical advice regarding this but my hemoglobin and hematocrit have been normal for about a year so maybe that's right.

I wish you all of the best!

[CH52 in reply to Cobalamin4Life]

I posted a reply late last night but it's not showing up this morning for some reason. Thank you for taking the time to reply and also wishing you the best in this journey. It can be a lonely one that's for sure!

[Gambit62 Administrator]

As far as I can work out there are no federal guidelines for treatment of B12 in the US and it doesn't really appear as if there are any state guidelines. The CDC did have a microsite on B12 but it got lost when they revamped their websites.

Worryingly in the US there is an increasing tendency for medical insurance not to pick up costs of injections for B12 at all but to go for oral supplementation instead - despite the evidence that whilst oral B12 can be effective for many people it doesn't work for all people.

I'm afraid I don't know about protocols for treating iron absorption problems either in the UK or the US (I'm UK based). Although iron absorption problems are common with B12 absorption problems it isn't an issue I have ever had to deal with personally.

Have you asked your GP if he is aware of other practitioners locally whom he could recommend?

[CH52 in reply to Gambit62]

Hi Gambit62! Thank you for the info. I have an absorbsion issue with B12 so tablets won't do me any good. The cost of the injections aren't too bad it was the iron that was cost prohibitive. Iron infusion costs have skyrocketed here. If my oncologist leaves the clinic I still have my internist who is excellent. He can help hook me up with a new hemotologist but I'm hoping I don't lose my current guy as his treatment is more aggressive than normal. I'm doing well under his care and making progress towards normalcy. I was curious about US treatment standards because of the care I'm getting currently is helping a lot and if I do lose him, i planned on showing any new doctors the treatment protocol in the U.K. Guidelines. If it happens, I will anyway!! Can't hurt to try! Thank you again for your reply!

[KimberinUS]

If using spinach to increase iron make sure it is cooked!!! One cup of cooked spinach has 6X as much iron as raw spinach. I didnt know that until recently.

[Cobalamin4Life in reply to KimberinUS]

Thank you for that info Kimber, there is a ton of info on the internet about that too! I missed out on all that knowledge as there was no internet when I banked my blood for my surgeries. I suppose with this new info I'd recommend a stir fry of spinach, beef liver and raisins but I don't see it catching on.

[CH52]

Hi all, I eat a diet rich in high iron foods such as soy, kale, chickpeas, mushrooms and dates plus occasional red meat lots of chicken but iron is still low. I even cook a lot in cast iron! My iron still stays low without the infusions. It all started with my not making red blood cells on my own and it's taken 3 months and 7 blood transfusions and aggressive B12 treatment and iron infusions to get to where my red blood cells are normal in size and shape. I tested positive for intrinsic factor and doctors put me through every gastro scope while in hospital: upper gi, colonoscopy and even swallowed a camera pill and all came out healthy. I know red meat is best source but only eat that once a week. I hate liver but love liverwurst and in Upstate NY there is a great German butcher who makes his own without preservatives and I get that about twice a month. Rest is vegetable iron which isn't as potent or as readily assimilated as animal meat iron. My problem with taking iron tablets is that they didn't bring my iron levels up fast enough so they gave me the infusions which have worked well for my situation. I checked the iron pill bottle that pharmacist gave me and the type of iron was ferrous sulfate. I will ask about the niforex forte.

Thank you both and I am sorry you are dealing with PA issues too but knowing I'm not alone sure helps!

[Cobalamin4Life in reply to CH52]

Hello again, CH52, you've really been through it with the anemia/low iron problem and I hope they get it resolved for you soon. Your diet sounds great and you are doing all that you can. Forgo my secret liver recipe lol.

In terms of cost of infusions if you need more, maybe the negotiated rates from Medicare will be different from those of your current insurance and you won't be responsible for 20% of $1200 each time. Just a thought, I hope it makes sense.

Medicare uses a "maximum allowable cost" for things that they cover so they would be basically telling the billing department what a fair price is and you would only need to pay 20% of that rate.

If you have PA as a result of a stomach issue that also lowers stomach pH there might be a difference in how well certain types of iron supplements are absorbed in a less acidic stomach. I read an article from 1969 that shows the solubility of 6 iron compounds in pH ranging from pH2 to pH8. If that applies to you maybe print a copy of this out and ask your doctor what he thinks, if you think he'd be receptive. gut.bmj.com/content/gutjnl/... (I found the article because I was trying to decide which type of iron to take because I have autoimmune gastritis that caused my PA).

Most of all, take good care of yourself and soak up the b12 and iron.

[CH52]

Thank you so much for all the good info!!!! You have been very kind to take the time to help me. This forum has been a sanity saver for me!!!! It's great that everyone is so eager to share! Sounds like you have been dealing with this for a very long time. I'm at the beginning of this journey and it's mind boggling at times! So much info you have to know about! Thank you again and you take care also!

[Cobalamin4Life]

You are so welcome! I was actually only diagnosed in March of this year, I was so confused! My PA was "accidentally" discovered by my gastroenterologist because I was having digestive problems, unexplained weight loss, difficulty eating and abdominal pain. Neurological and cognitive problems soon followed. It was hard for me to understand because probably the majority of cases of PA are diagnosed by blood tests taken for anemia. As far as I knew, I didn't have anemia, just extremely low ferritin levels. I've been anemic for most of my life, even as a child but my hemoglobin and hematocrit levels had been going back to normal in the past year or so.

I really couldn't comprehend what was happening to me and I couldn't read to understand anything, if I did understand something it was only briefly, then almost instantly my brain lost the handle on it. I know how hard it can be to try to put things together mentally with PA and if my experiences can help someone along the way to getting better then we're all the better for it. I am so glad there are so many good people here with sound advice. The admins and forum support members are top notch. We're all in this together!