Living in U.S. and recently diagnosed with PA

[dakota15]

My husband was diagnosed with PA in mid- November. He has been on weekly b12 injections since then. He is better, but it's not consistent. He hasn't worked in 3 months. I have looked on-line for a support group or blog like this in U.S. where we live, but haven't found anything. I'm mainly interested in symptoms people experience, long term outlook and how to manage PA day-to-day. Any insight will be appreciated. Thanks.

[Galixie]

I have found it to be a two-steps-forward-one-step-back process. I'm also in the US. I was first prescribed monthly cyanocobalamin injections but I found out rather quickly that going a month between injections just wasn't good for me. I'm currently on weekly injections but I still struggle at the end of the week with a few randomly returning symptoms (it's not always the same symptoms that return). I've managed to keep working through it all (although there are definitely days that my ability to think straight is kind of missing and I probably shouldn't be working). What type of work did he do previously? What types of symptoms is he experiencing?

Dealing with it day to day, for me, has mainly involved figuring out my limits and not exceeding them. For example, I might have the urge to weed the entire yard in one weekend, but if I try to actually do that it'll result in a pretty bad crash where I'm too fatigued to do anything at all for days or weeks afterward. Knowing this about myself, I have gotten to the point where I can look at the task of weeding the yard and draw mental boundaries for a section that would be realistic for me to accomplish. It takes longer to get the whole thing done, but it is much better for my health.

[dakota15 in reply to Galixie]

Thanks for responding. He works in an office, but at times he has to climb ladders and get up and down from the floor to check equipment.

He still has tingling in his leg, balance and memory issues.

He is going to try to go back to work part time on Monday.

We have talked about setting limits on what he does. He is less fatigued than before, but it doesn't take much to tire him out and he still has many of the same symptoms.

Dakota15

[Gambit62 Administrator]

There is a group called B12 awareness in the US but they don't seem to operate a forum

b12awareness.org/

I'm not in the states so can't comment on all the difficulties that you are likely to have but the following may be of use:

a) people respond differently to different formats of B12 - cyano, hydroxo and methyl being the main ones. I find that methyl works well for me with neuro symptoms - numbness/tingling in feet - but hydroxo works best for the psychological - depression, anxiety, generally being a grumpy so and so

b) B12 itself isn't toxic and there are no known downsides to having high levels ... though there are some concerns about the cyano in cyanocobalamin ... but at least that means there is room to experiment and work out what works best for your husband as opposed to what the text books say.

c) your body needs folate as well as B12 so worth keeping an eye on your husband's folate levels.

d) people vary a lot in how much B12 they actually need - I seem to need more than 1mg a day and it wasn't until I started supplementing at 3-4mg a day that I really started to recover - and I was actually continuing to go backwards before that.

e) whilst it may be the most efficent way of delivering B12 injections aren't the only option - some people find sublingual tablets (absorbed through membranes in mouth) helpful - there are also sublingual sprays, skin patches and nasal sprays (my main source) ... which can have the advantage of being easier to use when you need if they work for you.

[dakota15 in reply to Gambit62]

Thank you for the information. I asked the hematologist about methyl vs. cyano (which my husband is taking) and he said it didn't make a difference. I have read in different sites that people are having problems getting methyl because it's not being manufactured. You mentioned the sublingual sprays .... are they also by prescription? For a while he was getting 2 injections a week but his B12 went up to 900 so they told him to go to once a week. He has had a problem with low potassium for years so I worry about him taking to much B12 because I've read it can cause low potassium.

His neurologist figured it out after months of fatigue and migraines so we felt very lucky. But the general attitude of neurologist and hematologist is you're getting b12 so you should be better. He is less fatigued but still has many symptoms.

We read Living with Pernicious Amaemia and Vitamin B12 Deficiency this week and after seeing the list of symptoms he realized he has many more than he originally thought and it has been going on for years instead of months.

Thanks again,

Dakota15

[Gambit62 Administrator in reply to dakota15]

I'm based in UK rather than US so I'm not familiar with FDA regs etc that apply in the US - generally where there are problems with B12 being on prescription its the injectible forms and other formats tend not to be covered - that's certainly the case in UK but couldn't say for sure about US - know someone posted a day or so ago about trying to get to the bottom of what reg it is that makes B12 in US prescription only.

Hope that you find a solution soon - the attitude you mention of 'you are having B12 shots so you must be cured' is unfortunately the norm ... and as for symptoms going back years - I had depression and problems with tingling in hands and feet and pains that went back decades - I wasn't expecting the depression to go when I started treating myself but it did. The malabsorption that causes deficiency can just take a long time to progress.

[cdragin in reply to dakota15]

I have not tried the sublingual sprays, but they do carry them at the Vitamin Shoppe (vitaminshoppe.com). I get all my supplements through them; if you order $25 worth (easy to do) shipping is free. Plus if you register, you get "points" which add up, and the beginning of the next year you get a discount based on your points. One year I had enough points that I earned a $30 discount, my first order of the year cost me only 13 cents!

[BabsJean]

I'm also in the States, rural. I went to the "big city" to see hematologist and neurologist. Nero said I have nerve damage, sent me to hematologist. Hematologist told me I could go for 3 years without injections because B12 is stored and that cyano is only form and that if I'm getting shots I'm cured! So yeah, he hasn't a clue! I started crying out of frustration and he started talking depression. So frustrating. I'm still getting monthly shots of cyano, and I'm trying sublingual methyl. Some improvement in fog and fatigue, but still tingling fingers and toes. Maybe I need b complex or folate? I don't know. It sickens me that this is the state of medicine for PA...that we have to figure it out for ourselves.

[dakota15 in reply to BabsJean]

Yes it is frustrating. Where did you get sublingal methol?

[dakota15 in reply to dakota15]

His iron was low so he's taking a supplement and vitamin D3. I'm considering adding B complex also.

[slfwx in reply to dakota15]

Get your b12 up to 1500 or so. Vitamin D to 70 or higher. Keep them that way for life.

[dakota15 in reply to slfwx]

Thanks slfwx . After last lab b12 was 1035 on weekly injection. 3 months prior it was 1248 on bi-weekly injections so doctor said to go down to weekly. He's also taking D3 supplement but that wasn't checked on any of the lab work.

[slfwx in reply to dakota15]

My nuerologist says its important to find your most therapuetic range. He has experience of pernicious anemia from his residency with the mayo clinic. So pay close attention to levels and symptoms. Also daily Vitamin D3 should go by body weight. However intially 50,000 i u can be prescribed. I did that once a week for a few months. Now i maintain with avg daily dosages. But i will take 50000 once per month on my own. Upper higher values are better for fatigue and energy. It takes awhile too. I was a 7. My doctor told me lifeguards are around 100! I never felt different until close to 70. It was great for muscle weakness and muscle twitching. B12 got rid of my tremors, severe palpitations, diagnosed inconsistent arrythmias of all kinds, shortness of breath, always tired, slow thinking, slow speech, stuttering, memory issues, icy prickly stinging on forearms and hands, drooling and teeth clinching when asleep, etc.... my tremors are not 100% cured. But 90%. Heat in the summer and cold meds can make them act up. But never as bad as before. Not even close. Almost all neuro symptoms resolved but not 100%. I was misdiagnosed for so long that my heart rate wouldnt stay down. I began to get extreme varying arrythmias. Enough to have a cardiologist involved. But now im cured in that area as well. I dont even get palpitations that i had most of my adult life. A strange side note and odd coincidence is that i was diagnosed with geographic tongue as a child. But i now know that too was low b12. So no wonder i got so bad off in my early 40s! Its been a process to say the least. I think im as cured as can be . Also i dont have intrinsic factor.

[dakota15 in reply to slfwx]

You're lucky you have Dr. wth experience. We were fortunate his neurologist diagnosed him but his Dr.s don't offer much help with managing it on a daily basis. We would be totally lost if it wasn't for this site.

He takes 1000 iu daily of d3. His neurologist recommended that mainly because he wasn't getting enough sun. Then when he saw hemotologist he said he needed iron so he takes 325 mg daily. His last lab results showed that iron was back to normal.

He was feeling better, but since he went back to work a lot of his symptoms have returned.

[sebbousie in reply to slfwx]

How long did it take for your slow speech to improve on B12?

[BabsJean in reply to dakota15]

I ordered sublingual methylcobalamin (Jarrow) from Amazon.com.

[dakota15 in reply to BabsJean]

Thanks I will check into that.

[BabsJean in reply to dakota15]

Dakota? As in North or South Dakota? I would love to find a B12 expert in this area.

[dakota15 in reply to BabsJean]

I'm originally form South Dakota so I know how challenging medical care can be in rural areas. I still have family there but none of them have PA. I now live in Florida.

[cdragin in reply to BabsJean]

Depression is the doctor's first resort when they can't figure out what the F is wrong with you.

[_tracy_]

Hi I'm also in the US. Your husband is very lucky to have you looking out for him. There is also a Facebook group for PA, but like this site most members live in the UK.

It's been a real struggle for me, I was diagnosed very late and have nerve damage to my feet plus stomach problems, etc. I have had to buy my own B12 as my HMO will only inject on a specific schedule (cyanocobalamin) and my symptoms return more quickly than that. Similar experience to many of those on this forum who live in the UK.

I've bought sublingual and spray on Amazon. Look carefully at label pictures to be sure you are getting the exact form of cobalamin wanted and to avoid any additives he might be sensitive to.

I did find injectable methylcobalamin at trimnutrition, they are in Florida. Requires an initial phone consult which has an extra charge. MethylB12 is much more expensive than cyanoB12, and requires refrigeration and protection from light. I wrap the lower part of the vial in foil for extra protection in the hope later doses stay potent. They do include everything you need in the kit: syringes, alcohol wipes, special water and syringe to reconstitute the B12 which ships dried.

I also bought Yuliv hydroxocobalamin nasal spray through detoxpeople in the UK, they ship to the US.

[dakota15 in reply to _tracy_]

Thanks for the additional info _Tracy_. Did you need a prescription for the injectable methylcobalamin?

A little over a week ago he added subliminal methylcobalamin and just like when he started b12 shots he feels worse. Unfortunately he also had a sinus infection that week. It's not a fun time, but he's trying to stick it out and hoping for additional improvement.

In the month he's been back to work he only worked a full week the 1st week.

[_tracy_ in reply to dakota15]

To get a prescription there is a phone consultation that you set up from their web site. I think the person I talked to was a naturopathic doctor, I explained my situation (that I have PA). I then got a prescription that is good for a year. The consultation costs $50.

This is what I did: I went to trimnutrition dot com, selected methylcobalamin from the vitamin category (skipped those that include other B vitamins, just wanted B12). I think I had to put it in my shopping cart, register for an account and (I think) pay before I got to the part where I scheduled a phone consultation. They then call you at your scheduled time. There may be state laws involved so I can't guarantee that you'll be allowed to get a B12 injectable prescription. I live in California, was no problem for me.

I also often feel worse after I get my shot. I've been told it can be due to potassium depletion. The body kicks into gear making new blood cells and other repairs, requires potassium. I suggest having your husband eat more potassium rich foods like bananas, spinach, avocados, etc. after a shot (google potassium rich foods). You can also use potassium supplements but be extremely careful as too much is dangerous. My HMO doctors have no clue about this, I've been through several by now, I think PA must be extremely rare in the US. I learned about the need for potassium (and magnesium) through this forum and the Facebook PA group.

I'm still trying to find a balance between shot frequency, supplements, and diet to maximize the time I feel (relatively) well.

[dakota15 in reply to _tracy_]

Thanks _tracy_. My husband has suffered with low potassium for years so he is already on a prescription supplement. Our endrocinologist has done many tests to determine cause without results.