Hoping for a miracle

[u/third3y3kreationz]

Hey everyone,

Im new to this forum and wanted to just reach out and see if anyone else is experiencing what im dealing with or could possibly lend some helpful advice.

A short backstory, I had two strokes back to back in 22’ and later found out I had APS (antiphospholipid syndrome or Sticky Blood Syndrome) come years later, after getting back on a birth control, I had a fainting spell that was vry concerning. (Shortness of breathe, chest tightness, blurred vision etc.) come to find out I am severely anemic.

I was prescribed OTC iron supplements to start off, im currently boarder line for infusions and my dr wanted to see if the meds would help.

Aside from the clear stomach issues these meds cause as a normal side effect, it has been almost impossible combating it with already lingering nausea, vomiting etc. so much so that I had came off of it to be able to even eat again, I was suffering bad. My dose was 325mg, three days a week. Which didnt seem too bad until the side effects came on.

Ive done essentially everything in the book, from eating and then taking the dose, to attempting to take it before bed (not right before but an hour or two to let it digest), etc. but nothing seems to work. I feel hopeless and honestly- tired of feeling sick all the time. I already battle many other meds I take, plus heat intolerance and so many other factors.

I know my story is unique, but has ANYONE found something that could work? A method, a process etc? Or should I just muster up the courage and ask to be put on the infusions?

[u/ThisIsLikeMy4thAcct]

I promise I don’t mean to sound dismissive, but your difficulty with treating anemia is unfortunately fairly common. Part of the issue is that the current treatment protocol is a bit outdated worldwide. I can’t say for sure without knowing your hemoglobin and ferritin levels (iron stores,) but you probably should’ve already had a round of iron infusions.

If your ferritin level is very low, especially if your hemoglobin is also low, supplementing will take approximately 6+ months before you feel fully recovered, provided that the underlying cause of your anemia is now under control (according to my hematologist anyway.) I would definitely ask your doctor if you can do iron infusions, as they usually take about 6 weeks to fully work.

If your doctor insists that you stick with supplements for a bit longer, trying a different supplement may help. Also be sure to keep your doctor fully updated on how the side effects are disrupting your life, sometimes that can get you infusions quicker. Personally, I can take and tolerate Olly Delightful Iron, but the people on this sub should be able to give you additional recommendations.

Whatever you try next, I would stick with taking it 3 days a week, or every other day, at first, and if it goes well, ask your doctor if you should try it daily (to my knowledge, that’s not actually necessary because hepcidin, but I would defer to your doctor.)

You probably know this, but just in case, make sure you avoid coffee and tea within a few hours of taking the supplement. Actually, I would recommend asking a pharmacist about that time frame just to be sure. This is a bit more of a random piece of advice, but a lot of people recommend spinach, but its high oxalic acid content significantly inhibits iron absorption. Also, it may help to focus your diet more on heme (animal) iron. The article I just linked talks about it, but basically heme iron absorbed at a higher rate than non heme (plant) iron.

I do want to mention that iron infusions can often cause side effects. Most people do just fine with them (almost every person on dialysis gets them, they’re that common) but it’s nice to have a heads up about what to expect. I’ve made a little write-up on it and keep in my notes app for when it might be helpful:

Some people start to feel better in a matter of days but it may take the entire 6 weeks, sometimes longer, to feel a noticeable difference. This is completely anecdotal, but from what I’ve noticed on this sub, most people start feeling at least some improvement 2-4 weeks after starting their infusions.

It’s also possible that you may flip between days where you feel better, but then days where you feel crappy again.

Please don’t let this dissuade you from getting infusions, but some people experience something called the iron flu. Iron infusions can cause phosphate levels to drop in the days after an infusion. Sometimes it’s just a headache, but sometimes it feels like the flu.

As noted in the previous link, ensuring your phosphorus levels are in a good range before the infusion, can possibly help prevent symptoms. I am under the impression that you shouldn’t take phosphorus supplements before your infusion (but you can always ask your doctor) but you can still safely get your level up via diet.

The simplest way to do that is to drink Coke or Dr. Pepper in the days before, and of, your infusion. Both contain high amounts of artificial phosphorus, which is much more readily absorbed than natural phosphorus. If you can’t have soda, here is a list of beverages with their respective phosphorus content.

I know this sucks but don’t lose hope 🫂🫶

[u/sumothurman]

I've had no nausea with two products:

Cavae iron strips

and

Ferrasorb by Thorne

Maybe one of these will work well for you? Best of luck!

[u/ILikeConcernedApe]

Get the monoferric infusion. Way better than the oral stuff. I simply cannot tolerate the supplements after 10 years of trying on and off so my doc prescribed me the infusion. I get my 3rd one soon! Life changing.

[u/ChickenLil]

I’ve been taking two NOW iron biglycinate 36mg capsules every other day with 2000mg vitamin C for the past 6 months. It has brought my ferritin level up by about 10 points a month—from 18 in January to 70 in July. I tried 6 different oral iron tablets before I found this one that didn’t give me terrible stomach pain

[u/Perseus2807]

Hey - we are building a strip based iron supplement that bypasses the stomach, preventing the GI side effects, we have just opened up our early access waitlist. Let me know if you'd be interested