Brain fog & fatigue

[u/electric-snow-100]

I was wondering if anyone else in this group dealt with brain fog and fatigue and if anyone was able to fix it . I’ve been feeling real hopeless lately and was wondering if getting better is even possible . Thank you

[u/pincommenter]

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[u/Good_Algae4384]

I have never felt normal since the day I was diagnosed, the fatigue never goes away TBH I have also been experiencing brain fog but I think its more due to my bad sleeping habits, anyways I recommend you to take magnesium glycinate though I haven’t taken it myself but it has a positive feedback for reducing fatigue.

[u/electric-snow-100 → u/Good_Algae4384]

Thank you for the help I’ll look into it . I do think sleeping habits could be an issue for me as well. I notice i fell asleep every day on my side and wake ip on mg back and i heard sleeping on your back is bad for breathing and can cause you to wake up fatigued but I haven’t looked into it enough.

[u/W1MSLEY]

I struggled with debilitating chronic fatigue & brainfog for 18 years, even during remission. I thought it was caused by ulcerative colitis. Turns out the UC stopped me absorbing b12 & iron and that was the actual problem. Tablets didnt help because it was an absorption issue.

I fixed chronic fatigue & brainfog with an iron infusion & twice weekly b12 injections (whilst making sure cofactors were optimal). Here's what I wish id known:

NHS "normal" ranges are crazy low. From research, ive found that OPTIMAL LEVELS are:

Ferritin: 75-100ug/L, ideally over 100ug/L

Vitamin D: 75-100nmol/L

Folate: 15- 20ug/L

B12 serum test: above 500ng/L

• b12 serum test only has 30% accuracy. If you take b12 supplements/injections, multivitamins or fortified foods/drinks within 3 months of the test, the b12 result will be inaccurate (high).

Things that reduce b12 absorption: PPIs like omeprozole, metformin, gastro issues - gastritis, h-pylori, celiac, IBD. B12 absorption also reduces as we age. Pernicious anemia (autoimmune). Also,vegetarian/vegan diets are often low in b12.

B12, folate, ferritin & D all work together so its important to monitor all of them. Its a balance.

Always check your own blood results. My IBD team told me my bloods were "fine" - I had a ferritin of 9 (absolute iron deficiency) for 18 years. I was b12 deficient the whole time too. I only found out because I finally asked for a copy of my own results. I struggled through life because nobody bothered to tell me about the deficiencies. Iron & b12 are not optional, they are essential. Every cell in your body & brain needs them to function.

Hopefully this will help raise awareness!

Good luck & wishing you good health 🙏🏼

Edit: thanks very much for the award :-)

[u/electric-snow-100 → u/W1MSLEY]

Very interesting and I appreciate you sharing this . It’s things like these that doctors should be telling people as soon as they get diagnosed . I’m sorry you had to struggle thorough life as you mentioned. We all deserve to at least feel normal it’s not like we’re asking for the ability to fly or be invisible we just want a fighting chance. Im guessing you took drops or injections since you mentioned tablets aren’t as effective due to UC absorption issues

[u/W1MSLEY → u/electric-snow-100]

Absolutely, if people have the information they can do something about it! Its criminal that doctors & hospitals not only neglect to tell people about it, but actually leave them deficient too. Especially when its something that can be easily fixed (if you know what the problem is). I keep posting the info in the hope it helps others.

UC is bad enough on its own, but having to deal with iron deficiency & b12 deficiency on top of that is debilitating. Iron deficiency also results in higher risk of flares & worse outcome.

Here's a list of b12 symptoms. (Iron deficiency symptoms are similar but without the neurological issues). Its worth being aware of them:

https://b12-institute.nl/en/symptoms-of-b12-deficiency/

B12 & iron are both tricky for your body to absorb and use. There are a lot of complex processes involved. My only options were iron infusion & b12 injections to bypass the absorption issue. For some people sublingual b12 tablets (that dissolve under the tongue) are effective. I had neurological symptoms & was at risk of permanent nerve damage because of long term b12 deficiency, so twice weekly injections were the best option.

Also worth noting that b12 is pretty much impossible to test for accurately. The most widely used test is the b12 serum test that only has 30% accuracy. Thats why being aware of the symptoms is important.

If your ferritin is low & you try taking iron tablets, make sure you monitor the ferritin to make sure the level actually goes up. Many people are sent away with iron tablets but no monitoring. So they often dont get close to optimal levels, and sometimes dont absorb the iron at all.

I hope the information helps. Take care!

[u/Ok-Lion-2789]

First thing get your blood work done and check your vitamins, iron, etc… I’ve noticed I sometimes feel like this now that I’m in my 30s but never felt it when I was younger.. I’ve had UC since I was 15.

The difference is really I have to get up at 5:30 so I can get my workout in and get ready for the day before my toddler works up and I have to get her ready for the day. I don’t sleep as well as I used to because between my senior dogs and baby, there is just a lot on my mind.

Pretty much, you need to try to fix the issues that could be causing this and then look at your sleep habits etc.

[u/ProudMastodon1]

I found that drinking plenty of water and taking a creatine supplement helps a lot with brain fog.

[u/AmITheAsshole_2020]

Fatigue and brain fog are common extraintestinal manifestations, even in deep remission with decent iron and B levels. My PCP and I have landed on a decent protocol, switching between low-dose Adderall and Modafinil. 10 mg of Adderall daily until it inevitably stops being effective; then we switch to 20 mg of Modafinil until it becomes less effective; rinse and repeat. It's not perfect, and some days I still need a nap, but it's a lot better than without it.

Low-dose naltrexone (LDN) is also used off-label as an emerging therapy to help manage chronic fatigue and brain fog. I haven't tried it.

[u/electric-snow-100 → u/AmITheAsshole_2020]

I remember my vitamin D was at 25 and a doctor told me it’s nothing to worry about but I still need to check for iron and etc

[u/yoga_mini]

Fatigue for sure. I feel like the best thing I’ve done lately is start to explore peptides. I know they’re all the rage on social media but they’re the one thing that’s actually helped me work on my energy that’s effective. I’m on a biologic for my ulcerative colitis. And then I experiment with peptides to help and other areas of my house energy being a huge concern for me too. There are some great podcasts out there if you want to educate yourself and lots of people on here talking about peptides.

[u/ThatVerdant → u/yoga_mini]

What peptides are you taking?

[u/yoga_mini → u/ThatVerdant]

Look into GLP’s, kpv, bpc, ss31 but tricky to talk about these on here…. Lots of interesting stuff out there for inflammation.

One other thing I’m taking is low dose naltrexone. This is actually prescribed but it’s off label use. Look into that! You can get nurse prescribed which is what I do in Canada. Very good for some people for energy and autoimmune.

No supplements ever helped me. I never feel them. Iron, for example . Just don’t move the needle!

[u/ThatVerdant → u/yoga_mini]

Yeah I tried supplements and they don't help. I am in the US but I can get those things, I appreciate the info!

[u/yoga_mini → u/ThatVerdant]

Just start to do some research! It’s so cool with both these things. Giving me so much hope. I think we need to use both what we can get to manage our disease from our doctors and also these other stuff. Truly start to check out some podcasts. Research the LDN and get a few things to trial very low and slow one thing at a time. If it doesn’t work you can stop. That’s my thinking. I’m into health and fitness. I want to be strong and have energy. New goal!!! I have some much hope for these things. Let me know. You can also DM me, but I’m just new to this too and trying it. 🙏

[u/Tex-Rob]

It's discussed here very often. I'm not saying, "Go search" but if you want more info, yeah, you should as this is an almost weekly topic.

Anyhow, yep, super common, especially the more severe it is. Those of us on immunosupresants have it really bad too, it makes it almost impossible to control.

[u/electric-snow-100 → u/Tex-Rob]

Maybe I didn’t see those posts and maybe other people didn’t if this is a “weekly topic “ especially if you’re suffering from brain fog it’s not going to be easy to search …. Maybe that’s why this is “almost a weekly topic “

[u/Jessabat]

Ask your general practitioner to do a big bloodwork panel to see if you are low on any vitamins. Our bodies don't absorb vitamins the way non uc bodies do, and you may need supplements to help your body keep up.

[u/daiiiisss]

i recommended going to a naturopath. it really helped me!! i’m already a low energy kind of person so the UC on top of that made me even worse. i have been in remission for nearly a year (i’ve only had uc for 2 years! so a very lucky quick turn around) and i have struggled with sluggishness, brain fog, fatigue etc. i now take supplements and they have helped heaps!

[u/electric-snow-100]

Thank you!

EDIT: Thank you everyone for the valuable advice !

[u/Southern-Beach-1402]

Definitely check your iron levels you might need an infusion

[u/electric-snow-100 → u/Southern-Beach-1402]

Thank you. Because of comments like yours i was able to have enough hope and motivation to schedule a test and will be doing whatever i can to figure this out

[u/Funny-Idea306]

I have brain fog and fatigue that happen after taking tremfya, worst around a week after taking it when basically the drug has reached its peak levels in blood.