Running and PA / IDA

[still_elsewhere]

Hi, everyone — like I said in my first post, my ferritin’s 8 (recently treated with infusions) and I have a positive IFAB test (I’m two B12 injections in) so it looks like I’ll need to more carefully monitor / inject my vitamins from now on!

This is my first tango with any kind of disorder, so I have some questions. Namely: having recently turned 30, I’m used to being an athletic person. College cross-country trained me to run at least 35 miles per week even now, in adulthood — though recently that’s been more and more difficult (i.e. my pace is slower than it’s ever been, I couldn’t hit 35 miles if I tried, and I find myself lightheaded, weak, and in need of a nap even after a very short run).

So, is it possible to have IDA and PA and still train to run competitive marathons and half marathons? Even if my endurance and speed return with treatment, is there any risk of harming myself through extreme exertion?

Thanks for your help!

[wedgewood]

If you can get rid of your iron Anaemia , and get the correct regularity of B12 injections to keep all of your P.A. symptoms at bay , I see no reason why you should not be able to resumé your athletic ambitions .eventually . You know , I assume that, as a P.A. patient, you will have to have B12 injections for life . It cannot be cured . But given the correct treatment , it will not impact on your life at all . I’m afraid I don’t have much knowledge of iron Anaemia , as this forum only deals with vitamin B12 Anaemia .

For the time being though, you should confine yourself to light exercise, and be patient, which is difficult .

It is often difficult in the U.K. to get the correct regularity of injections needed from your G.P. That’s why I have had to resort to self injecting . We are all different in our needs, which is not recognised by most of the medical profession . who hand out a “ one size fits all “ treatment of one injection every 2 or 3 months.

I think that the correct regularity of injections depends on the length and severity of the B12 deficiency. Also genetics can play a part . There is very little research done on P.A.so we are really rather on our own, except there are always fellow members on this forum who are very willing to share their knowledge and experiences . Very best wishes .

[still_elsewhere in reply to wedgewood]

Thanks for this information! It’s revived my optimism and makes practicing patience a little easier.

Yeah, the difficulty of receiving frequent-enough injections seems to be a theme on this forum, which sounds really rough. My doctor’s prescribed them monthly, which seems to be the common treatment here in the US (though our headaches come from interactions with insurance companies, which is difficult in its own way — I’ve spent a total of 4 hours recently arguing over a surprise $1300 bill for my iron infusions!).

And yes, I’m grateful for this forum, as medical opinions definitely seem to be either absent or divided. Immediate experience counts for a lot!

[Romany8]

Hi, have the doctors given any explanation or ordered any tests as to why both these levels are low, I started off initially with PA after feeling shocking for many months, then my iron was low at 3, and my vitamin D was low, all found within few months of each other, however I was eventually diagnosed with chrohns disease and it all made sense as to why all my vitamins depleted, however on a happier note, after my iron infusions and b12 injections I feel fit as a fiddle so I’m sure you will be able to get back to running without feeling so tired afterwards, maybe worth asking though why the docs believe you’re losing all your vitamins.. good luck with everything 🙂

[still_elsewhere in reply to Romany8]

I’m sorry about the Chrohn’s but glad to hear you’re feeling much better!

I was supposed to have an appointment with a hematologist today for further testing (to figure out if anything else is going on), but had to move it back a few weeks given some insurance issues / uncertainty (yay America).

Thanks for the luck!

[Nackapan]

Have you been given a reason your ferritin so low? My daughter a little younger than toh also has PA /b12 deficiency. Initially with megabolistic anamia which was corrected and low folate. B12 83 2 years on and her ferritin 10 but no treatment advised ??

So just wondered if a reason found for yours?

Dont push your body too hard. Let it recover then build up exercises again.

[still_elsewhere in reply to Nackapan]

I’m in early days, so I’ve been told I have IDA and need B12 shots forever, but I had to move my first appointment with a hematologist (and subsequent further testing) back a few weeks given insurance issues and fears about surprise costs (America is fun). So, I’m hoping I’ll know more soon!

I’ve always attributed my low iron to endurance exercise: low ferritin was common enough on our cross-country team that our coach made everyone get tested and a lot of us took liquid iron, so I just kind of thought it was normal. I stopped taking the liquid stuff after college when my activity level became more moderate, but after reading more, I now know how important iron is!

I’m also a vegetarian, but I eat a diet that’s full, daily, of just about every plant- sourced form of iron there is...

I haven’t been tested for levels of any other vitamins but D, so am waiting on those with interest.

I hope your daughter gets some answers too.

[Nackapan in reply to still_elsewhere]

Thank you. You too

[2020marypa in reply to still_elsewhere]

Just reading trough your posts and it’s like reading my own. Was marathon running up to last year and got knocked with Ferratin at 4 firstly and then taking the iron for that masked the fatigue resulting in not discovering b12 until it was nearly 100. What I can say is that I was so breathless and it made no sense. Felt like I was training to get less fit. Anyway I was also vegetarian for at least 10 years of my running and though I thought I was eating lots of the good green stuff it really wasn’t enough for the level of endurance as a woman. You’d have to be super vigilant with all the grains and pulses at every meal and being honest I was in the beginning but later as you are getting 35+ miles a week in, a weeks work, time to sleep travel etc... couldn’t be doing it for every meal. Of course hindsight is wonderful!!

It takes a bit of time and I made mistake of running through the Ferratin low which meant I had know chance really of restoring and building a reserve. So could be worth sticking to waking for 3 months and start back from scratch. It’s better than months of bad runs and slow recovery.

Best of luck with it all. Keep us posted how you are doing.

[still_elsewhere in reply to 2020marypa]

I’m sorry that we’re both dealing with the same thing — but honestly, I’m also glad not to be alone!

I think most of my running friends (even one who’s an internal medicine resident) don’t really see the need to take a step back from training, so I’ve been feeling badly about doing so for the time being. But it’s also no fun to run at 9-minute pace when you’re used to being much faster (and each run feeling much better).

Have you stopped being a vegetarian? I’m so torn — it’s such a part of my identity (I’m at 16 years) and I know we can’t absorb B12 anyway, so part of me wonders if it matters at all? Really curious as to your thoughts, though!

[2020marypa in reply to still_elsewhere]

Absolutely good to know you’re not dealing with this solo... there are so many days that you can feel that you are esp when your running group is doing some session or there is a race that you’re doing steward for again! We will compete again, hold on to that! Some of my club mates are running PB marathons at 40 so you have millions of miles of running ahead of you!

I was a real foodie and almost stubbornly insisted that food was better than supplements and admittedly I was a bit ignorant about the variant levels of need of some people (probably especially women, though not the exclusively) for Iron and B vitamin maintenance. It may be the case that absorption is the problem but I decided not to be so stubborn as to continue to deny that vegetarian didn’t help my deficiencies. It would really be too coincidental that there be no correlation.

I understand your dilemma completely. I went through the diagnosis and the loading injections and then a number of months battling to get the Ferratin up. It got so difficult to manage it all as the iron tablets were exacerbating stomach issues. So I thought to myself I’m just letting stubbornness make this more complicated and can simplify for a short time.

So long way round, here is what I decided ... I started eating salmon for lunch (I didn’t eat fish either) and chicken once per week and beef twice per week. I started with really small amounts, like a 2-3 pieces of chicken or one lean mince meatball or thumb size bit of steak and I increased over a few weeks. It was hard at first and textures were strange. I took the decision that I will do this for a year and then hopefully I’ll be at a really good base line and have stores replenished as well as taking on regular top ups. Then I can renew vegetarianism with a better knowledge of supplements and awareness to monitor.

I think between running and vegetarian and being female I was so depleted that unless I changed some of those things I was always chasing my tail, just getting enough for current day and really have to try and get those stores up!!

Sorry was so long winded, I’m nothing if not thorough ... also stubborn behavior is just talking about my personality. You might have very different logic for your decision and your journey to this point could be very different. I don’t assume that everyone is in this place for the same reason as I. Some days I could just kick myself when I think of al the times I ranted about the billion dollar supplements industry!

Hope you are having a good week

[still_elsewhere in reply to 2020marypa]

Thanks for your response! Yeah, I was ignorant about vitamins and supplements until just now — I also trusted my diet to do all of the heavy lifting!

I love that you recognize the unique nature of everyone’s journey — what a good philosophy to live by.

[JanD236]

In answer to your question, I would think that you’ll have to resolve the IDA and also treat the PA with an adequate injection regime. I can’t see how you’d be able to run marathons whilst anaemic!

My first brush with an autoimmune illness started almost immediately after I ran a marathon. I couldn’t recover, was breathless, high heart rate and many other symptoms within a few weeks of running it and I just couldn’t pick myself up. A few months later I was diagnosed with Graves’ disease (over active thyroid).

It took a couple of years to recover and I resolved never to push myself beyond my limits again. I still ran, but no more than half marathons, and I did a lot of cycling, but neither at full on race pace.

10 years later I was diagnosed with PA. For a year or 2 my cycling performance (and motivation) was poor but once I recovered and had established the injection regime that worked for me (twice weekly) I’ve been fine. In the last 6 days I’ve had a 100 mile ride, a 65 and a 55 all at a good pace (but I never go through that limit though). I won’t always cycle that much but I’m probably at peak fitness in the year and it’s been a last blast before the weather changes.

So the reason I’ve given my story is that I feel you will get back to the running you love but some patience will be required. First whilst you treat the IDA and then to build up your fitness very slowly whilst you discover the B12 injection regime that works for you.

Good luck!

[still_elsewhere in reply to JanD236]

Thanks so much for this reassurance! It really does help — with cultivating both patience and hope.

[Jengastar]

Hi! I don’t have the answer but I’m in the same place as you! I was diagnosed by dr with iron deficiency 6 years ago. I was given iron tablets and my levels were fine after 6 months but I had fatigue. It would pin me to the bed and I would just feel so unrested after any sleep and then on and off I was so ill. A year ago I had other symptoms such a burning and pins and needles in feet, loss of coordination and memory, and depression. I started daily B12 injections in May and 80% of my symptoms disappeared. While I can function day to day fine on that I can’t run. I used to run ultramarathons and was a sponsored athlete, well still am somehow! I last ran competitively about 2.5 years ago. My body just can’t train and adapt properly at moment and I feel weak trying to push any pace. I have started working with a physio to help recover proprioception as I was having run looking at my feet. I also have an appt with a private sports dr next month - My GP dr is useless and won’t help me, and I feel if I saw a private dr they wouldn’t see it as very serious I couldn’t run as I can work and walk, so that’s why I went to a sports dr. However, I am sort of expecting that I need to be more patient and that based on some helpful comments here that it takes years and not months to recover. Good luck and would be interested in your journey as I am in a similar place so keep me posted!

[still_elsewhere in reply to Jengastar]

Thanks so much for sharing your experiences. I’m sorry things got so bad for you — yes, here’s hoping you’re on the upswing now!

Like you, I knew my iron levels had been low in the past, but I didn’t fully realize how important iron is — and I definitely had no idea how important B12 is. I trained for the Boston Marathon last spring, and now some of the symptoms I experienced during that cycle — angular cheilitis, severe gastrointestinal pains (couldn’t eat anything without pain for two weeks), fatigue, headaches, etc. — seem related to either PA or autoimmune gastritis (still working out the relationship between those two — AG leads to PA, right?).

I’ve only done two marathons so far, and I was hoping to run more of them, competitively, throughout my 30s and 40s, if not for the rest of my life! I’m a little afraid that my chances of any future PR have evaporated. It sounds like you are, too. I’ll keep my fingers crossed for both of us — and yes, please reach out if you discover any useful tips or tricks!