for once, the bloods did not lie
Jun. 1st, 2025 01:20 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
requiemsSo, the bloodtests I went for? Something wrong with me confirmed. This is very exciting, because not only does this never happen, it's actually treatable. What a novelty.
Folate (B9) and B12 are typically lumped together as they cause similar symptoms. My B12 is comfortably sat smack dab in the middle of its two ranges, so it's just folate.
And the thing is, I think my folate has been consistently low and causing me problems forever. These are the symptoms of low folate:
* Fatigue and weakness
* Shortness of breath
* Paleness of the skin
* Tongue swelling and soreness
* Mouth sores or ulcers
* Changes in hair, skin, or nails
* Irritability or mood swings
* Depression
* Reduced sense of taste or smell
* Digestive issues like diarrhoea and indigestion
* Headaches
* Problems with memory, understanding and judgment (cognitive changes)
I have every one of these symptoms. :') most are ME symptoms - there's a lot of overlap - but low folate can exacerbate and make the ME worse. Did they take any of this into account themselves? Of course they did not. That would require having ME on my health profile or them knowing what it is. So once again I'm off to riddle out the intricacies of my health myself.
Having low folate fatigue on top of ME fatigue would explain a lot, actually. There's been a level of excess fatigue from doing simple tasks I've never had before for the last eighteen months, where I now have to go back to bed to rest following any kind of exertion for 3-8 hours, where I simply pass out over and over again whilst horizontal. What was a okay, I can't look at written words for the rest of today has become 3+ days. The quantities of payback are so much more skewed than they used to be, and whilst ME is known to worsen, the decline has been rapid and brutal. I can have worse PEM putting away groceries for ten minutes than I can being out of the house for 1.5 hours for a blood test (significantly worse based on triggers, lots of sensory stimulus, talking, concentrating etc), and this previously was not the case.
I do groceries in stages. My dad brings everything, in bags, and he puts these bags on chairs at a height I don't have to bend down. I move all these items onto the counter in the kitchen, two steps away. I have to do this to make sure I have everything. I then sit down and rest by eating something with sugar for ten minutes. I transfer everything that's perishable to the fridge by sitting down and having my dad pass items to me, minimal movement, no stretching. I again have to do this to know where everything is, else I'd have to repack the fridge or give vocal direction which would exhaust me even more. Everything that goes in cupboards simply stays on the table for 5 days until I then put it away. Doing groceries wrecks me physically and mentally for minimum 3-5 days, sometimes 10-14, depending on how the forced rest following goes. Sometimes I am too exhausted to sleep... it feels like my body can't sustain itself whilst asleep; if this happens it will be longer. And, yeah, low folate can also cause issues with falling asleep.
In true nhs fashion, I was only contacted over low folate because my result is borderline (it's not. It's below the reference range! That means it's low), and they're assuming it's dietary. Without asking me. Once again: it's not.
Folate content of selected foods, from here. This is what I eat every day that has folate. 400mcg is the recommended daily amount.
Fortified breakfast cereal - 100mcg, 25%
White rice - 90, 22%
Asparagus - 89, 21%
Lettuce or peas - 64/47, 16%/12%
Like, that's 70%. That's 300mcg. Folate is still low. I don't think it's dietary. My understanding is the body does not hold folate, and that it's retained in water. So having daily diarrhoea would lead to me losing all the folate fairly soon after I have it... right?? I don't think it's dietary. All things considered I eat pretty well these days. If anything should be drastically affected by my going vegetarian/pescatarian, it's B12, not folate, because you can't get B12 from plants. I was unknowingly eating so much food with folate in for the fibre content until my body threw a temper tantrum in November. This isn't going to be fixed by eating some spinach; when I could eat tomatoes and beans I was closer to 100%. Instead, it's malabsorption. Why, I don't know, other than that it's been happening so long it's stuck. It's losing so much from the diarrhoea that is potentially being caused by the lack of folate in the first place that the only way to fix that is to jump start the system, imo. Once it starts working properly the rest should hopefully follow suit.
When I said to myself, it feels like my body is failing to digest food properly, that it just didn't have the energy for it, I was actually pretty close to the mark.
I still think there's more going on (naturally), but if I had the energy to tackle the GP about it would be a radical start, lmao. If anything I'm more unimpressed they dismissed it as IBS and left me to needlessly suffer an additional six weeks, but, that's the NHS for you...
I've researched these less (researching folate during PEM was bad enough) but there are two results my GP did not contact me about which are actually borderline and have been things causing me problems for years.
One is my thyroid and TSH levels. An under active thyroid was brought to their attention before - I have all the symptoms - and was dismissed, because, wait for it, the NHS can set their own parameters of what qualifies as high enough TSH levels per region to provide treatment for it. If I lived where my grandparents do, it would have been treated. As it's been ten years, perhaps they should do something about it.
The second was for CA-125, that measures the amount of that protein, and high levels can be a sign of something wrong with the ovaries. It's usually used to check for signs of cancer, but other things can lead to false positives.
Like, endometriosis.
Me, pointing: YOU. WHY IS IT ALWAYS YOU AT THE SCENE OF THE CRIME. EVERY TIME.
But yeah, idk. If that's coming back as borderline maybe we should have an ultrasound and find my ovaries for real this time, considering my maternal grandma has had ovarian cancer, instead of them just filing it away. Just a thought!!
My plan right now is, supplements, surviving the next few weeks as every week has something on until the end of June (I am already in the bad place, I am not looking forward to it), and seeing how those change things. Either way the NHS should do a follow up on folate with another blood test but lol, they have not motioned for that, so I am going to ask them for one in say, three months, so end of August, where I'll also ask them for a full thyroid check and CA-125 again.
This entry is kind of rough, my brain has been on fire for days but it's important so I tried to order my thoughts before groceries happen again and I will once again be worse. Do not get sick. Comorbidities bad.
Folate (B9) and B12 are typically lumped together as they cause similar symptoms. My B12 is comfortably sat smack dab in the middle of its two ranges, so it's just folate.
And the thing is, I think my folate has been consistently low and causing me problems forever. These are the symptoms of low folate:
* Fatigue and weakness
* Shortness of breath
* Paleness of the skin
* Tongue swelling and soreness
* Mouth sores or ulcers
* Changes in hair, skin, or nails
* Irritability or mood swings
* Depression
* Reduced sense of taste or smell
* Digestive issues like diarrhoea and indigestion
* Headaches
* Problems with memory, understanding and judgment (cognitive changes)
I have every one of these symptoms. :') most are ME symptoms - there's a lot of overlap - but low folate can exacerbate and make the ME worse. Did they take any of this into account themselves? Of course they did not. That would require having ME on my health profile or them knowing what it is. So once again I'm off to riddle out the intricacies of my health myself.
Having low folate fatigue on top of ME fatigue would explain a lot, actually. There's been a level of excess fatigue from doing simple tasks I've never had before for the last eighteen months, where I now have to go back to bed to rest following any kind of exertion for 3-8 hours, where I simply pass out over and over again whilst horizontal. What was a okay, I can't look at written words for the rest of today has become 3+ days. The quantities of payback are so much more skewed than they used to be, and whilst ME is known to worsen, the decline has been rapid and brutal. I can have worse PEM putting away groceries for ten minutes than I can being out of the house for 1.5 hours for a blood test (significantly worse based on triggers, lots of sensory stimulus, talking, concentrating etc), and this previously was not the case.
I do groceries in stages. My dad brings everything, in bags, and he puts these bags on chairs at a height I don't have to bend down. I move all these items onto the counter in the kitchen, two steps away. I have to do this to make sure I have everything. I then sit down and rest by eating something with sugar for ten minutes. I transfer everything that's perishable to the fridge by sitting down and having my dad pass items to me, minimal movement, no stretching. I again have to do this to know where everything is, else I'd have to repack the fridge or give vocal direction which would exhaust me even more. Everything that goes in cupboards simply stays on the table for 5 days until I then put it away. Doing groceries wrecks me physically and mentally for minimum 3-5 days, sometimes 10-14, depending on how the forced rest following goes. Sometimes I am too exhausted to sleep... it feels like my body can't sustain itself whilst asleep; if this happens it will be longer. And, yeah, low folate can also cause issues with falling asleep.
In true nhs fashion, I was only contacted over low folate because my result is borderline (it's not. It's below the reference range! That means it's low), and they're assuming it's dietary. Without asking me. Once again: it's not.
Folate content of selected foods, from here. This is what I eat every day that has folate. 400mcg is the recommended daily amount.
Fortified breakfast cereal - 100mcg, 25%
White rice - 90, 22%
Asparagus - 89, 21%
Lettuce or peas - 64/47, 16%/12%
Like, that's 70%. That's 300mcg. Folate is still low. I don't think it's dietary. My understanding is the body does not hold folate, and that it's retained in water. So having daily diarrhoea would lead to me losing all the folate fairly soon after I have it... right?? I don't think it's dietary. All things considered I eat pretty well these days. If anything should be drastically affected by my going vegetarian/pescatarian, it's B12, not folate, because you can't get B12 from plants. I was unknowingly eating so much food with folate in for the fibre content until my body threw a temper tantrum in November. This isn't going to be fixed by eating some spinach; when I could eat tomatoes and beans I was closer to 100%. Instead, it's malabsorption. Why, I don't know, other than that it's been happening so long it's stuck. It's losing so much from the diarrhoea that is potentially being caused by the lack of folate in the first place that the only way to fix that is to jump start the system, imo. Once it starts working properly the rest should hopefully follow suit.
When I said to myself, it feels like my body is failing to digest food properly, that it just didn't have the energy for it, I was actually pretty close to the mark.
I still think there's more going on (naturally), but if I had the energy to tackle the GP about it would be a radical start, lmao. If anything I'm more unimpressed they dismissed it as IBS and left me to needlessly suffer an additional six weeks, but, that's the NHS for you...
I've researched these less (researching folate during PEM was bad enough) but there are two results my GP did not contact me about which are actually borderline and have been things causing me problems for years.
One is my thyroid and TSH levels. An under active thyroid was brought to their attention before - I have all the symptoms - and was dismissed, because, wait for it, the NHS can set their own parameters of what qualifies as high enough TSH levels per region to provide treatment for it. If I lived where my grandparents do, it would have been treated. As it's been ten years, perhaps they should do something about it.
The second was for CA-125, that measures the amount of that protein, and high levels can be a sign of something wrong with the ovaries. It's usually used to check for signs of cancer, but other things can lead to false positives.
Like, endometriosis.
Me, pointing: YOU. WHY IS IT ALWAYS YOU AT THE SCENE OF THE CRIME. EVERY TIME.
But yeah, idk. If that's coming back as borderline maybe we should have an ultrasound and find my ovaries for real this time, considering my maternal grandma has had ovarian cancer, instead of them just filing it away. Just a thought!!
My plan right now is, supplements, surviving the next few weeks as every week has something on until the end of June (I am already in the bad place, I am not looking forward to it), and seeing how those change things. Either way the NHS should do a follow up on folate with another blood test but lol, they have not motioned for that, so I am going to ask them for one in say, three months, so end of August, where I'll also ask them for a full thyroid check and CA-125 again.
This entry is kind of rough, my brain has been on fire for days but it's important so I tried to order my thoughts before groceries happen again and I will once again be worse. Do not get sick. Comorbidities bad.
