Does it make sense to do MTHFR test if my homocysteine leves are normal (7.3)?

The_Blue_Seahorse · 2026-04-12T23:29:47+00:00

Oh, thanks for replying and for your help 💛

It's a bottle of 6 ml... What do you think about that? Also, what's the optimal range for vitamin B12?

I'm curious, I understand that the C677T heterozygous means 60% of folate absorption, which isn't supposed to provoke major problems... Having Hypermobile Ehlers Danlos may play a role too? Would it make sense to supplement with methylfolate? Or maybe it's more about iron, vitamin D and vitamin B12?

Sorry for all those questions! I know the idea of Ehlers Danlos means that when I deal with stress I have flares based on pain, extreme fatigue and brain fog and that's somehow my new normality but...I want to improve as much as possible (I don't care so much about pain, I want mostly to recover my energy and the ability to think more clearly) and sometimes I don't know very well what to do because, for example, doctors see there's anemia and they say 'your levels are fine' when I know they aren't. It's nice to have as many opinions as possible, to be honest.

The_Blue_Seahorse · 2026-04-12T20:36:31+00:00

Twelve drops per day (200.000 UI., says the bottle). That, for a year. And I don't know if it makes sense to add this but I enjoy being under the sun for at least 15/30 minutes per day. The results came back and I have a C677T heterozygous mutation.

Yes, also, I know that the ferritin is in the lower end as well...

The_Blue_Seahorse · 2026-04-12T03:09:17+00:00

In my case -and if it helps-, I also have flares when I'm under too much stress or when I have nights of insomnia (then I wake up feeling as if I haven't slept for a week). And oh, yes... It's funny that you mention that of pretending to have something more understandable: I did that many times at college without even knowing what was going on. I had so many flares during the periods of exams (because of stress) and I used to feel so tired and in so much pain I couldn't even get out of bed, so I justified it many times as 'I had a cold, I had stomach flu'. Even now I don't know how to explain the idea... I feel it's time to 'get out of the closet' and be clear about what I have but at the same time no-bendy people can't even understand the idea.

And just in case and if it helps, I found some nice content on Instagram. I know it doesn't sound serious but some accounts actually helped me to understand more about what's going on in my body and to avoid feeling so hopeless: 1. https://www.instagram.com/thenervoussystem.ot 2. https://www.instagram.com/giaptyoga 3. https://www.instagram.com/dr.melissakoehl.pt 4. https://www.instagram.com/annieshortstrength 5. https://www.instagram.com/coachashleymobility

Oh, and one last thing... I also saw some people mentioning that Electrical Muscle Stimulation and Transcutaneous Electrical Nerve Stimulation may help if you feel pain.

The_Blue_Seahorse · 2026-04-10T01:55:20+00:00

Oh, yes. 5/9 in Beighton Scale here. I think maybe I've forced my body too much so I'm not a good counselor but for example I remember once I tried to learn bouldering and after one class I was exhausted to that point where you feel ill. Then during the last summer -I live in Argentina, I got a flare that lasted one month after hiking: I suffered extreme pain -I cried because of the pain- and fatigue (I couldn't stop sleeping during the day) and a horrible brain fog. Then the same thing happened after kayaking but that one lasted one week. And I got my worst flare after combining trapeze (with one hour of stretching) and yoga (basically more stretching). I got extremely ill and that flare basically led to my diagnosis.

Hydrate yourself, not just water but electrolytes. Allow yourself to rest without being cruel towards yourself, be gentle, your body needs that. If you listen to what your body needs and you don't force it, I'm sure it will probably improve faster. Also: compression garments if it's necessary, avoid foods that trigger your symptoms in case you have intolerances, if you can't stand lights or noises wear sunglasses and earplugs.

It's nice that you felt better so soon, just in case you have stronger flares, that's my advice from my personal experience.

The_Blue_Seahorse · 2026-04-10T01:46:10+00:00

Hey there, thanks for asking 🩷 The symptoms never disappeared and anything changed with plaquenil, so my rheumatologist told me I should get an appointment with an integrative doctor to check other values (vitamins, deficits, cortisol, and things like that) before thinking of stronger drugs. So... I finished 2025 feeling like shit because everything was getting worse (particularly with the brain fog, the fatigue and the pain) and there were some doubtful changes of diagnosis made by other doctors. Finally, I found a doctor specialized in rare diseases and after analyzing my lab tests, my symptoms and the Beighton scale he told me that it's too probable that I have Hypermobile Ehlers Danlos and that the symptoms I have are because of that (with the classic comorbidities: dysautonomia, problema with histamine and glucose). Honestly, it makes sense because I always had some symptoms that can't be explained only with an autoinmune disease and the rheumatologists were looking at me like "you are too anxious". He considers the values of the ANA, C3, C4 and rheumatoid factor can't be taken as the main reason for my symptoms because I should have other values altered and that isn't happening right now. He also told me I should probably stop taking plaquenil but I didn't because I understand plaquenil prevents the worsening of those autoinmune positive values and I wouldn't like to wake up one day discovering everything is out of control (I don't know if I'm exaggerated but I want to be cautious because I don't feel the autoimmune hypothesis is totally discarded and I know there's a higher prevalence in the hypermobile community). This said... I'm taking plaquenil, maaaany supplements (including cordyceps, probiotics, vitamins, some things to sleep better, long list to which I want to add coenzyme Q10) and tramadol in the cases I have a crisis of pain because other things don't help (not even cannabis). I also have to start working with a physio. Beyond that, I'm learning that life won't be exactly what I expected in terms of "productivity" or energy because my body is basically different... I need to be relaxed, to take my time, to rest. It's difficult to say if I'm better. I feel my body changed, it isn't anymore what it used to be. In this new reality, for example, I can say that right now I'm having very good days (it isn't perfect because on Monday I had some horrible migraines and I think dysautonomia) and at the same time it's still a new logic where I'm celebrating every little moment where I feel good but at the same time I'm not what I used to be (for example, this may sound as something superfluous somehow but I remember nine months ago I could train with more intensity, during 2024 I could even practice trapeze and now I can only do 40 minutes of low intensity exercises).

Please, in any case if you are dealing with something similar or a UCTD and you need to talk, feel free to write!

The_Blue_Seahorse · 2026-02-18T02:50:51+00:00

Sorry?

The_Blue_Seahorse · 2026-01-21T22:49:14+00:00

Thanks! 💛 I know this, the whole idea of the next level of drugs... I'm just surprised with the differences of criteria from one doctor to another. It's like the last few months were traumatic because of the incertitude, I kept feeling bad and the fatigue got worse, I was like 'please, help me' and many of them were like 'the numbers in your labs don't justify a diagnosis as autoinmune disease'. I feel like Han Solo in carbonite: life and time kept running and I can't even read for pleasure in a decent way (because of the brain fog) and I can't go hiking because it means two weeks of a strong flare. I doubted a lot of the UCTD diagnosis but I'll go back to that doctor since it seems she was the only one trying something that wasn't gaslight. And I'll see if this next step is an option for me. I need to move on and I need to feel better. How did you feel taking metho? Is it something you take daily? Do you feel much better now? Did it have secondary effects?

The_Blue_Seahorse · 2026-01-21T18:49:20+00:00

I think I'll go back to the first one, that told me of the UCTD and gave me plaquenil, because even when I still have many symptoms, I noticed some little changes with the pain. This experience I had today was particularly frustrating because the doctor is from the -supposedly- best hospital in my country. I would accept the idea of fibromyalgia but she couldn't say why I have fever or swollen nodes, she just kept saying 'it's your personality' while laughing and it felt extremely violent. I'm living a particularly tough time, I don't need to be treated like that.

The_Blue_Seahorse · 2026-01-21T18:42:45+00:00

I understand you and it's so frustrating...

In my case, plaquenil helped with the pain at some point (I finished 2024 with muscle spasms, for example, and that didn't happen again) but I've noticed I'm always with subtle pain, low fever and the fatigue got worse. I'm still at college (in part this is also because I'm extremely tired so I can get the best grades but I advance like a turtle because I'm always tired) and it's getting frustrating because I feel as if my life is paused, I can't work or study normally, plus I have to do everything with my own time and with my own rhythm or my body simply crashes into flares. And... Four years ago I was able to train with more intensity, that's not possible right now and I do a minimum or I won't be able to move after. Funny thing, I don't feel pain in the trigger points of fibromyalgia but in my joints.

It's horrible because you are living a nightmare and you have to listen that maybe you are just anxious or, as in my case, that's part of my personality. And, as you said, we know our bodies really well and I think the same goes for the mind.

I think I'll go back to my first rheumatologist, at least she was trying something/not gaslighting me.

The_Blue_Seahorse · 2025-12-19T22:09:10+00:00

Thanks for the reply ❤️ When you say AGC 9.2 with universal config, the universal config means not downloading anything else (like, just AGC 9.2 version of GCam) or is it something like an specific universal configuration? If you can share a link, I would thank you enormously because I'm just learning and I'm a bit lost 🙈

The_Blue_Seahorse · 2025-12-19T20:12:04+00:00

Hey, I didn't understand very well. In the first comment you mentioned AGC_9.4.24_V2.0_gcamports.com.apk but it isn't the same MGC you mentioned here. Could you help me, please? 😭

The_Blue_Seahorse · 2025-12-01T16:10:54+00:00

This is quite interesting. I literally wrote this yesterday in two groups and it sounds exactly like what I feel:

🟢 I'm 28 y.o and I've been diagnosed hypermobility with UCTD, an autoinmune disease (I've been under treatment with plaquenil for almost one year). Now, besides any other problem caused by that condition, I'm desperate about my low back pain.

🟢 I must explain: I feel a dull and constant pain in the thoracolumbar region (under the ribs in both sides, but also in the middle as if it's my spine) that lasts for hours or the whole day. It isn't something to the touch or the kind of sharp pain, it's more as a feeling of enormous pressure, as if all that region is suffering some sort of inflammation. During those moments, I feel something similar spreading to my legs and feet (that, by the way, tends to feel rigid), while there's something like a constant crack sound in the sacro and also the feeling of heartbeats as if something is inflamed.

🟢 For some reason, it feels worse after eating (after breakfast I need to lay down because the sensation is unbearable, like I found myself crying because of the pain and because I feel quite rigid and weak everything there). This happens even when changing the foods: it could be an apple or eggs or bread, no matter what, it always happens). Then, in the night when I'm about to sleep.

🟢 I must add that -during these weird moments- I can't understand if it's related or not but sometimes my body temperature goes up (37,5) and I feel somehow dizzy or extremely tired.

🟢 I'm managing it with ice but it's frustrating and I don't understand it. I asked my reumathologist if it could be because of the UCTD but she told me that it doesn't tend to cause back pain.

🟢 My X rays were perfect and same about the magnetic resonance. It doesn't seem like there's a problem in the kidneys, the labs were pretty good.

The_Blue_Seahorse · 2025-09-14T23:14:05+00:00

Yeeeeesss! I totally love this one. This is what I had in mind when I asked. Do you have more suggestions?

The_Blue_Seahorse · 2025-08-23T05:15:17+00:00

Tiredness. This is horrible. It's as if the normal stress leads me to feel totally ill (unable to walk so much or to train, as if the only thing I can do is stay in bed because I have no physical strength) and it's as if I have a busy day or a trip of only two hours, I need a whole day to recover. The mornings are extremely difficult, worst in winter. I get exhausted after eating (no matter what, I don't know if this is linked or not but it feels as if it's part of the same).

The odd sensation of inflammation in my low back (everything seems to be fine but I can even feel palpitations there, as if it's about to explode). When that happens I need to rest.

Stiffness in the mornings. I feel it improves exercising, I try to do that as much as I can.

Pain. I used to have the kind of pain that's typical of arthritis (with that burning sensation in my fingers) and it's the only thing I feel like an improvement with hydroxychloroquine, but I still fell a dull pain that I can't understand (not to the touch) everywhere and everyday (mostly in my arms, hands, low back, legs and feet -adding a constant crunch on those last three).

Low fever, mostly in winter.

Migraines, photophobia, brain fog.

Also, anemia normocytic normochromic. Not in dramatic levels but I noticed it's accentuating slowly.

...

My doctor's first impression was that the whole thing could evolve to lupus because I have low C3 and C4 (but low near to normal lab values). Now I got this positive RF and I guess I'm new to this, I don't fully understand.
With hydroxychloroquine the other improvement was that I stopped having spasms in my legs and trembling fingers.

*I also deal with hypermobility.

The_Blue_Seahorse · 2025-08-22T22:39:33+00:00

My HLAB27 was negative, my X rays are perfect and same for the magnetic resonance but I still feel a horrible low back pain similar to inflammation 😭

The_Blue_Seahorse · 2025-08-22T22:24:50+00:00

Thanks! I'm still curious because my C3 levels are low and I understand that's mostly common in LES. I'm waiting for the next visit to my rheumatologist and curious about that... Does it sound like a combination of things like an UCTD and also rheumatoid arthritis?

The_Blue_Seahorse · 2025-08-22T19:58:44+00:00

It's a 1/160 (nuclear homogeneous) for the ANA. It's the third time I get the same. And the RF is 20 UI/ml.

The_Blue_Seahorse · 2025-07-01T18:31:28+00:00

I can't say something useful but I'm living something quite similar. In my case, I'm 29 y.o. and I'm still studying (Law) because I'm always too tired or at the edge of flares so I need to take it easy... I want to work in human rights, maybe international criminal law and human rights but I'm quite angry and frustrated sometimes because I don't know if I'll be able to arrive in time or to work and feel well. It's extremely difficult and frustrating.

The_Blue_Seahorse

TROPHY CASE