Little advise from a 14 years post-op

I marked my 14 year post-op anniversary this year. I would do it all over in a heartbeat and only wish I would have known about it 10 years earlier. With that being said, wanted impress upon those who are thinking about this surgery or have recently had it, please please please be diligent about taking your supplements. This is something I did not do, and it has most definitely caught up with me.

My reason for not taking them was simply, I felt fine without them. That is until I no longer felt fine. I would say for about the last 3 years, I have been experiencing extreme fatigue/exhaustion. My immune system is compromised so when I get the typical winter cold, it lasts for about 3 months. It runs the gamete, cold turns into bronchitis, upper respiratory infection, double ear infection, in and out of urgent care. I was experiencing brain fog, easy bruising, brittle nails, etc etc.

I finally got real with myself and requested my doctor order bloodwork for EVERYTHING.

My results were pretty much what I expected.

I'm deficient in just about everything.

Calcium, Iron, B12, D, K, E, Zinc. Extremely anemic with a ferritin level of 4, and I lost 12.2% of my bone mass in the last 13 years put me in the osteopenia range.

I'm working on getting my levels up and have made progress with the D and B12. The toughest had been my iron level. Even superdosing at around 200mg of elemental iron a day, it wouldn't budge. I just completed 2 iron infusions. For the record, a bag of infusable iron runs $3500 each.

Please let my stupidity be a warning to everyone. Taking your supplements is NO joke.

Congrats on being 14 years out! I hope your labs can get back up to normal and you feel better soon.

Liz

Jill - thanks for posting this as a reminder to everyone (including us old timers) about the importance of keeping on top of labs, vitamins, supplements, etc.

With regard to your statement about the cost of infusions , do you not having medical insurance and if you do, do they not cover the infusions? I've had issues with anemia for years (I'm also 14+ years post-op) but have always been fortunate to have insurance cover the majority of the costs for infusions (and anything else I've ever needed medically related to my DS).

My last infusions (April 2017) were with a drug called Injectafer. My hematologist recommended it as a new drug designed specifically for people who have trouble absorbing oral iron. It required two infusions one week apart. That's it. I get my labs checked next month but my last labs (November 2017) my ferritin was still over 200 and I still feel great. Hopefully the infusions are helping.

Even being diligent we still run into issues. I've had bone loss (but I'm also 61) and dealt with anemia.

Hope you start feeling better soon.

Yes I have insurance, and they did cover the infusions. I was just very surprised at the actual cost of that little bag of iron. I do feel better and 2 weeks after the infusions my ferritin was 346.1. Obviously that's high, and we are rechecking in a couple months. I was surprised that my other levels related to iron weren't where I expected them to be after the infusions. My actual iron went from an 8 to 37. 37 is the very low end of the acceptable range. Further, my iron saturation was only at 10% when it should be between 15-50%. My hemoglobin barely made it to normal range, my RDW actually went up. I go see my doctor on Thursday, so hopefully she'll have some answers. It's a bit of a struggle because my DS surgeon is in another state and there just aren't many DSers here. The bariatric centers here won't see me because I didn't have surgery here. Been hard to really obtain proper post care.

Honestly most bariatric surgeons are so clueless about vitamins and aftercare that you're further ahead with a family doc or hema that listens. I'm only 4yrs out but use my family doc for all testing. He understands what I want and that I will adjust my vitamins, not him, he's there for the weird stuff or if I need referral for hematology, etc.

Glad you're feeling better. Hopefully you live in an area that has a good selection of doctors. My surgeon is local but I would never go back there. Most surgeons have terrible follow-up care, unfortunately. I struggled finding a doctor (I did use my surgeon to at least get my annual labs done). I finally found a good internist who was willing to learn about the DS and work with me (instead of fighting with me). Try to find a good internist who's willing to learn about (or who already understands) malabsorption. Also try an endocrinologist. I was also lucky that I found a hematologist who understood malabsorption (most have experience with RNY so they get it).

Such an important message! Thank you for describing your experience. At 13.5 years out, I also have iron deficiency anemia requiring infusions. This is despite being compliant with oral doses of iron. Good for you for your dedication to fixing your deficiencies and for educating others! Whatever I have learned from my surgeon's staff (which is a lot), I've also learned by reading on my own and on the various forums. I highly recommend looking into a high-dose K2 and D3 regimen for osteopenia. As early DS veterans, we may not have had the benefit of current nutritional recommendations at the start of this journey, but we can change the future.

Do you have a good vitamin regimen to follow? Vitalady's plan is a good one. Have you learned about taking dry supplements for D, A, K and E and not a multi for those? Surgeons and nutritionists are often not aggressive enough to address a DS patient's needs...even those who claim to know it.

JILL,

I also bought that lesson. Iron infusions are not possible for me.would take almost 2.5 months of our income....

Once you get your iron up in acceptable level you may be able to keep it up the same way i am getting mine up. I take 2 dessicated liver capsules a day. I get them from a supplement site. just put in buffalo calf or beef liver caps...in search engine. there are several brands and price is very similar. they are organic, grass fed for this purpose. these capsules contain everything one needs to absorb the iron including the Intrinsic factor according to one of my internists. I have also added K2 to my regimine.. . according to info that was released recently K2 ..controls the use of minerals and moves magnesium and calcium back into the bones and teeth. and away from arteries and palque formation. FYI, Vitamin K is the one that thickens blood. there are also several other K vitamins with numbers 3-8 those do not have a known action at this time..but have been isolated.

You may want to look into beef spleen, it actually has more iron than the liver does. Ancestral Supplements carried that. Also, if you look on the Feraheme website, there is a program for the uninsured or underinsured to assist with the cost of the infusions. That stuff was the main expense of the infusions. The hospital and nursing fees were only like $200 and the Ferahem was like $3500. I?m pretty sure Injectofer has some type of assistance program too. Good luck to you!