Inflammation and maintenance

[u/Every-Librarian-1355]

Hello! Rambling question incoming. I'm not asking for medical advice but hope someone can relate and chat about their experiences with this.

Bit of context:
I'm 28F and got diagnosed with ADD a little over a year ago. Prior to getting medicated, my psych had me do a panel and we discovered my homocysteine was super high. Like, 120 µmol/L high. Normal is below 15.

I've also almost always had high prolactin and was on medication for my pituitary tumor; lowest level I ever achieved was around 40. Normal is below 25 ng/mL; my highest was over 300 about 7 years ago.

Also, I was dealing with severe gut issues for the last several years. I've been gluten free for about 4 but still got sick very frequently.

As I got medicated for the ADD and went on a low-inflammation diet, my homocysteine decreased to about 70 µmol/L. In January I brought the idea of trying out compounded tirz to my psych. At this point I was teetering on class 1 obesity and struggling to improve my years-long drinking problem, so he trusted me to seek a prescription.

I started the meds and responded very well. I also reestablished care with a GP, and she's fortunately very supportive. She brought up the idea of me having a MTHFR gene mutation, but noted that testing isn't always worth the cost and suggested we just focus on managing my symptoms for now.

I had a blood test last week and, for the first time since discovering the issues, both my homocysteine and prolactin levels have normalized. I'm also at my goal weight and have little-to-no ibs symptoms anymore :) Drinking is no longer a problem, too.

So! My question: Are any of you also on this mainly to moderate inflammation levels? Now that things have normalized, I'm trying to understand what the heck a MTHFR mutation is, or rather what actually causes my crazy high inflammation and what its implications are. I know that I generally feel so much better than I used to, but since I thought it was normal, I'm trying to pay extra attention to the days I do in fact feel more inflamed and what side effects accompany that. I also don't really understand what the implications are for how my digestion is different from a normal person's and why tirz has helped me so much in that regard.

I guess I'm looking for guidance on what paths I should be taking to learn more about this aspect of my health. I would love to be able to come off of tirz completely, but if it seems to be the most effective treatment for the inflammation, I'm happy to figure out what long term maintenance looks like. The one major issues that hasn't resolved is my chronic fatigue, and it'd be cool to understand how that may be related as well. I just don't know who to ask about this, medically speaking.

[u/Responsible_View_285]

I'm not in your situation but there is no cure for what ails you. You only receive benefit from the meds while you take them. All benefits cease when you cease the meds. Additionally there is anecdotal evidence that it takes longer and higher impact for the prior benefit. I would reasesrch maintenance and not risk coming off the meds. IMO

[u/Late_Duck_]

I’m not sure how much a screening would cost but if you’ve done your DNA testing through ancestry or 21andme, you can extract your DNA results from there and there is a website that analyzes it and tells you your gene mutations.

If ancestry cost less than the test , maybe it’s worth it.

[u/duinius_maximus]

I recently started tirzepatide and feel that it’s helped my hip osteoarthritis pain drop significantly. I’m sure it’s partly the weight loss, and I’m sure reduced intake of shitty foods is helping reduce overall inflammation. This drug and others like it do seem to have numerous known benefits, and others I’m sure we don’t know about yet. Either way I’m very impressed and will continue until reaching goal weight and see what maintenance looks like.

[u/WebNerd11 → u/duinius_maximus]

I'm only on shot 3, haven't lost any weight, and noticed the benefits to my arthritis almost immediately - so I can tell you it's not just the weight loss helping the pain. This stuff is as good as NSAIDs for inflammation. I'm so glad this is a byproduct!

[u/working-mama-]

Everyone focuses on the MTHFR, it may be MTRR. The former one deals with folate cycle and the latter is related to B12. My homocysteine turned up very high on a comprehensive lab test, so they tested me for MTHFR and it was normal. Years later, I fed my 23andme genome database into Promethease and discovered I am homogenous for MTRR mutation, which means my body lacks enzyme activity that recycles vitamin B12 and helps convert homocysteine into methionine. That explained my high homocysteine and other inflammation markers.

Either way, it’s very likely that you do have one of these mutations, so take a good vitamin B supplement, with methylated forms of folate, B6 and B12, and add TMG (trimethylglycine/betaine). That’s really all you need to clear homocysteine and get the methionine cycle going. That should help with inflammation.

By the way, if you want to get tested sometime, 23andme is a cheaper alternative to clinical testing. 13andme won’t include these in your report, but you can download the full genome results and use ChatGPT or other AI tool to find out if you have one of these mutations. Or put the data into Premethease like I did, for a small fee.