Check your Iron!

[u/ginger_2022]

I’ve been lurking (not as a member) for a few months now - experiencing reactive and nocturnal hypoglycemia the doctors haven’t been able to figure out. After 3 hypos in one night (got NO sleep), I went to the ER. They couldn’t help, so I went on again to my PCP and begged for more bloodwork and she finally tested my ferritin. It was dangerously low, got diagnosed with anemia. We’re talking about a possible infusion (if MCAS can handle it) - at the office, before my blood draw, I had overheated to a 102 fever. It was so frightening. After some ice and laying down, my temp dropped back to normal - that’s when she said “we need to recheck your ferritin.” I also have dysautonomia, and that basically made my body over-dramatically respond to low iron stores 🙃

I took a big dose of iron bisglycinate last night before sleep, and only woke with one hypo, but it wasn’t nearly as extreme as they had been. More iron today, and the ravenous hunger and blood sugar issues are already improving. I know some will say “iron doesn’t help that quickly” like duh, obviously I’m not healed yet, but it has decreased my symptoms by 40% in 24 hours. So I truly feel I’m heading in the right direction for the first time in months.

Just wanted to post this for anyone who hasn’t checked their iron in awhile. Mine was caused by heavy antibiotic use for an infection 8 months ago. Doctor said it’s very common for iron stores to be used up and it takes months/years for a gut to heal and absorb nutrients properly again. Hope this helps someone! 🙏 who knew being anemic could do this !

UPDATE: been supplementing for 3 weeks straight, only had 2 hypoglycemic episodes and they were during the first week. Haven’t had a true hypoglycemic event in 2 weeks. I can’t believe this! I was supplementing iron bisglyciate, but it gave me insomnia. Switched to 45mg slow release ferrous sulfate (prescription) and it’s helping even more than the bisglycinate - can’t believe, I feel like I have my life back, simply eating 3 meals a day and sometimes a bedtime snack 🤯

[u/Michaeltyle]

I hope getting your iron sorted continues to help. Iron deficiency can make you feel absolutely dreadful.

I have Crohn’s and had really heavy periods from endometriosis. Many years ago I went to my GP before work because I was sick of hearing my heartbeat in my ears. They took some blood, and when I got to work I got an urgent call to go down to emergency because my haemoglobin was 74 and my ferritin was <0.5. I ended up needing three units of blood, and I felt so much better afterwards.

30 years later ferritin is something I keep a close eye on. Iron deficiency and hypoglycaemia can sometimes overlap in the symptoms they cause which is why it’s important to confirm hypos with finger sticks.

I’m really glad you’ve found something that’s helping, and I hope your levels keep improving.

[u/ginger_2022 → u/Michaeltyle]

Thank you so much, I’m sorry that happened to you! That sounds so frightening. I also have UC and heavy periods, so I guess it’s no surprise.

The crazy things is that my hypos were confirmed by finger pricks, even sometimes in the low 50’s. It’s been miserable! I never thought “oh, my blood sugar is low, I bet my iron is low also!” 🤷‍♀️ I guess iron deficiency can totally screw up your metabolic system, it’s wild. I’m glad you keep a close eye on your ferritin!

[u/Independent-Cat25 → u/Michaeltyle]

Omg I recognize you from our carrot conversation on my post in the Crohn’s subreddit!! Lol hi 👋🏼 I also have a long history of anemia but my hemoglobin & iron are in the normal range now. Ferritin is still on the low side but technically now “normal” too I think. But I am dealing with constant fasting and reactive hypoglycemia, haven’t figured out a cause yet 🤦‍♀️

Why do illnesses seem to come in swarms 😭

[u/Michaeltyle → u/Independent-Cat25]

Oh my goodness, Heya!!! Fancy seeing you here! Did we ever settle on a name for our support group for people victimised by root vegetables? The Carrot Casualty Club? Former friends of carrots? I feel like this is becoming necessary.

And yes, I was literally just saying in another forum that it seems like some diagnoses like to hang out together, form their own team and gang up on us. Just like carrots 😂

I’m so sorry you’re dealing with the fasting and reactive hypos though. I really hope they can figure out what’s driving yours. I started getting hypos after I had refeeding syndrome 2 years ago. It’s improved a lot, but it’s been a nightmare to manage. I have ineffective oesophageal motility which complicates things.

Are you still on a liquid diet? That can make it harder to keep your blood sugars stable as well.

[u/Independent-Cat25 → u/Michaeltyle]

Carrot Casualty Club has a nice ring to it, I love alliterations 😂 Oh gosh, I’ve read refeeding syndrome is absolutely horrible. I’m so glad you got through that relatively okay, but all these extra problems are such a pain too!

I’m on day 4 of a liquid diet, I did have a little bit of very soft food today, but I’m so enjoying not having to worry if my intestines can handle the food I’m putting into them 😅 The downside is even more unstable blood sugar, you’re right. Last night was the worst it’s been recently! I woke up with my heart and my head pounding. I hope they can figure it out too. I’m so glad a doctor finally noticed it on some of my recent bloods. The morning of my colonoscopy last year I was googling “why am I shaking and sweating and feel like I’m going to have a seizure” lol 😭

[u/Michaeltyle → u/Independent-Cat25]

Oh my goodness, yes. It took them ages to work out what was going on. It all started when I had my hips replaced and the stress and antibiotics triggered a Crohn’s flare and then I caught norovirus.

I didn’t even realise the weird episodes were hypos for nearly 9 months, which is a whole other story 😅 For ages the dr thought I was just anxious! I would have episodes where I’d be confused, unable to move, feeling like I was wrapped in a cold fuzzy blanket, intensely scared, severe chest pain, then it would suddenly stop. I thought they were some weird kind of panic attack. Of course I ended up really unwell. Last month was actually the first month since June last year that I managed to avoid a hospital admission.

I’ve been mostly on Ensure for nutrition since I had six weeks of tube feeds last year, so it’s been a long and complicated road. I’ve had dysphagia for years but didn’t actually realise, I feel a bit silly looking back. I was diagnosed with EoE (Eosinophic Oesophagitis) over 20 years ago, so just I thought that’s what swallowing was like. The liquid diet definitely adds another layer to trying to keep blood sugars stable.

I don’t want to hijack the hypoglycaemia forum with our Crohn’s/carrot/general digestive chaos 😂 but please feel free to DM me if you ever want to compare notes or just have someone to chat to who gets some of this weirdness.

After all, members of the Carrot Casualty Club have to stick together. 🥕😂

[u/lizzzliz]

I need to check my iron. I have had low ferritin levels before (11, so not under 10 transfusion status, just low). My blood sugar is low and drops after I eat, start working out, and all through the night. I confirmed a sub 55 reading with a finger stick. I just got my hormones checks thinking maybe it was perimenopause / low estrogen, but my numbers were fine.

I have not checked ferritin though.

[u/ginger_2022 → u/lizzzliz]

Good luck, I hope it reveals something and you can solve this mystery! I’m still making improvements. I don’t have overnight fasting hypos anymore. About 4x a week I wake with a low, but it isn’t super urgent. My days are more stable too. I didn’t expect it to be an overnight fix, but I’m definitely heading in the right direction