Extreme fatigue - low folate

[Extremefatigue24]

For the past 2 months I've been feeling extremely tired. I finally went to the doctors a month ago and told them about my symptoms of the extreme fatigue, light headedness, headaches, limb and body feeling like lead along with tingling. I also mentioned that my skin which I know I suffer with was having a particularly bad flare up and was finding myself itchy a lot.

They sent me for bloods and after 2 tries (something happened to the first lot) I finally got told I have low folate and vitamin d and was put on 5mg folic acid for 4 months and 20,000 of vitamin d everyday for 2 weeks and then one every 2 weeks for a further 10 weeks.

It's now been 2 weeks and if anything I am feeling worse. My lymphnode in my neck under my chin is up (it's been like that for ages but i'm becoming more aware at the moment) and I'm just worried. Basically as soon as I stop and sit down at home I fall asleep. At weekends I'm absolutely useless as I can sleep through the night and wake up tired and if I sit down on the couch you can guarantee I will be asleep for 3-5 hours at a time. I do make myself go out but its hard. Fed up of feeling so crappy and the extreme fatigue is getting me down. I've read that it can take some time to see improvement but i'm worried as feeling worse. I've lost appetite and not hungry like I usually am.

Not sure if to go to docs and raise it again along with my hard raised lymph node (while not physically noticable I can feel it all the time and it's definitely up).

Has anyone had this and can advise me on time to feel more myself?

Other than this I'm healthy 36 yo woman.

I will put my blood test results down below in case anyone has any other insights.

Sorry for the long post!

HbA1c levl - IFCC standardised
40 mmol/mol
Haemoglobin estimation
130 g/L
Total white cell count
9.4 109/L
Red blood cell (RBC) count
4.19 1012/L
Haematocrit
0.37
Mean corpuscular volume (MCV)
88.3 fL
Mean corpusc. haemoglobin(MCH)
31.0 pg
Mean corpusc. Hb. conc. (MCHC)
351 g/L
Red blood cell distribut width
11.8 %
Platelet count
355 109/L
Mean platelet volume
10.3 fL
Platelet distribution width
11.6 %
Neutrophil count
5.1 109/L
Lymphocyte count
3.4 109/L
Monocyte count
0.7 109/L
Eosinophil count
0.1 109/L
Basophil count
0.0 109/L
Immature Granulocytes
0.03 109/L
Percentage nucleated RBCs
0.00 %
Serum sodium
141 mmol/L
Serum potassium
4.5 mmol/L
Serum creatinine
65 umol/L
eGFRcreat (CKD-EPI)/1.73 m2
> 90 mL/min
Serum total protein
72 g/L
Serum albumin
46 g/L
Serum alkaline phosphatase
80 u/L
Serum ALT level
17 u/L
Serum bilirubin level
4 umol/L
Serum globulin
26 g/L
Serum calcium
2.42 mmol/L
Calcium adjusted level
2.43 mmol/L
Serum inorganic phosphate
1.27 mmol/L
Serum TSH level
0.25 mu/L
Serum total 25-OH vit D level
25 nmol/L
Serum free T4 level
14.6 pmol/L
Serum C reactive protein level
2 mg/L
Serum ferritin
210.0 ug/L
Serum vitamin B12
348 ng/L
Serum folate
2.6 ug/L

Did you mention the lymph node when you saw the GP?

The GP absolutely needs to know about the lymph node.

@AnnaMagnani no I haven’t while it’s been there for a while I forgot to mention it when I went.

I’ve got to have my bloods taken this week to check my calcium levels haven’t been affected by the vitamin d so I will bring it up when I go for the results.

You would need to put the normal ranges in for those blood tests as they differ from lab to lab. Being slightly low or high isn’t too much of a worry.
Have you been checked for Coeliac disease?

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/?&&type=rfst&set=true#cookie-widget

Definitely go back to the doctors asap op!

No idea about your test results or lymph nodes but people with a common mthfr genetic mutation cannot metabolise folic acid as efficiently as people without this mutation leading to a deficiency in folate levels.

Some people think that taking regular folic acid can result in a build up of unusable folic acid and that that methylated folate should be used instead.

Having said that I think you should go back to your doctor as you could possibly have more than a folate deficiency going on.

Considering your ongoing fatigue, skin issues, and persistent lymph node swelling, it might be worth investigating the possibility of food intolerances. Sometimes, certain foods can trigger immune responses and lead to symptoms like fatigue, headaches, and skin problems.

A food intolerance test could help identify specific foods your body may struggle to tolerate. I did mine here: https://www.intolerancelab.co.uk/food-intolerance-tests.
It costs £49.

Updated to include the ranges in brackets in case that helps

HbA1c levl - IFCC standardised
40 mmol/mol (0 - 41)
Haemoglobin estimation
130 g/L (115 - 155)
Total white cell count
9.4 109/L (3.8 - 11)
Red blood cell (RBC) count
4.19 1012/L (3.8 - 5.5)
Haematocrit
0.37 (0.37 - 0.47)
Mean corpuscular volume (MCV)
88.3 fL (80 - 96)
Mean corpusc. haemoglobin(MCH)
31.0 pg (27 - 32)
Mean corpusc. Hb. conc. (MCHC)
351 g/L (320 - 360)
Red blood cell distribut width
11.8 % (9 - 15)
Platelet count
355 109/L (150 - 400)
Mean platelet volume
10.3 fL (N/A)
Platelet distribution width
11.6 % (N/A)
Neutrophil count
5.1 109/L (2 - 7.5)
Lymphocyte count
3.4 109/L (1.5 - 4)
Monocyte count
0.7 109/L (0.2 - 0.8)
Eosinophil count
0.1 109/L (0 - 0.4)
Basophil count
0.0 109/L (0 - 0.1)
Immature Granulocytes
0.03 109/L (0 - 0.5)
Percentage nucleated RBCs
0.00 % (N/A)
Serum sodium
141 mmol/L (133 - 146)
Serum potassium
4.5 mmol/L (3.5 - 5.3)
Serum creatinine
65 umol/L (45 - 84)
eGFRcreat (CKD-EPI)/1.73 m2
> 90 mL/min (59 - 120)
Serum total protein
72 g/L (60 - 80)
Serum albumin
46 g/L (35 - 50)
Serum alkaline phosphatase
80 u/L (30 - 130)
Serum ALT level
17 u/L (0 - 32)
Serum bilirubin level
4 umol/L (1 - 21)
Serum globulin
26 g/L (18 - 36)
Serum calcium
2.42 mmol/L (2.2 - 2.6)
Calcium adjusted level
2.43 mmol/L (2.2 - 2.6)
Serum inorganic phosphate
1.27 mmol/L (0.8 - 1.5)
Serum TSH level
0.25 mu/L (0.27 - 4.2)
Serum total 25-OH vit D level
25 nmol/L (30 - 200)
Serum free T4 level
14.6 pmol/L (11.9 - 21.6)
Serum C reactive protein level
2 mg/L (0 - 4)
Serum ferritin
210.0 ug/L (30 - 400)
Serum vitamin B12
348 ng/L (191 - 663)
Serum folate
2.6 ug/L (3.9 - 26.8)

Sorry for the delay in replying to people who've been kind enough to respond :)

@ThursdayTomorrow I haven't been tested for coeliac not something I thought of as do not have the stomach related issues but might be something to look into

@dreamworld44 managed to get my bloods booked in for tomorrow so I will get a same day appointment on Monday when I know my results should be in and I'm off work to follow up. Also gives it a few more days for the supplements to kick in

@5byfive That's interesting I will read up a bit more on it all

@lemontart13 it's something I'm looking into I'm also trying to think if i've introduced anything new into my diet since this all started that it could be as well

Thanks for everyones response really appreciate it

How are you feeling now @Extremefatigue24? I had very similar symptoms and low folate and iron. I see your haemoglobin was normal - so was mine, but my serum ferritin and iron was low (I didn't even know there was a separate iron blood test, just thought haemoglobin and ferritin were relevant). I had 3 months worth of 5mg folic acid and felt so much better after a few weeks! My skin improved massively, I've lost weight and the tingling/pins and needles/bone aches went away. However within 2 weeks of finishing the folic acid, the symptoms are back 🙄 I have my follow up bloods tomorrow, so will be interesting to see what they say.

I also noted your tsh was a bit low and your hba1c a bit high. Were these discussed with you?

@OdeToBarney Thanks for your message. I wish I could say that things had improved I've been on everything for 7 weeks and I am not feeling any better it's been going on for a total of 3 months now with other symptoms for about 2 months.

It's surprising that my Iron/Ferritin is so good but it is.

I ended up having tests redone 6 weeks after starting and my TSH had gone from 0.26 to 5.21 and my T4 had dropped down to 9.9 so I am now on levothyroxine and am having a follow up in 4 weeks. When they redid my bloods (which they asked for btw) I questioned why my folate / B12 and something else came back N/A and they said the lab will never test for these regularly and will only do them every 6 months which I find a bit odd since how do you know your levels are back up.

To be honest he was very dismissive of me as a whole (he has not been the doctor I've seen throughout this but rather the lead doctor at the practice).

My Hba1c was not discussed - if anything is within normal range they just ignore and even though top end of normal they won't address it.

I am still suffering with the extreme fatigue, loss of appetite (i'm down to 1 main meal a day which is not me as I love food), lightheadedness which feels like it's getting worse. But will have to wait another 3 weeks to have my follow up with the GP who has been the one i've seen since all this started and is much more understanding that this is having a massive impact on my life.

How are your symptoms as a whole and did you have anything else?

@Extremefatigue24 I'm sorry to hear things aren't any better. To be honest what you have described with your thyroid is exactly what happened to a family member of mine. Hypo to hyper. They were diagnosed with hashimoto's disease as they had a positive antibody test. Not that this makes any difference to their treatment, as far as I know.

It's weird they wouldn't test your folate and B12 again. Mine were only done 4 months ago and were redone today. Plus I understand being on folic acid can affect B12 levels, so it seems strange. My bloods today were a straight copy of the last lot.

In terms of symptoms, I had:
Awful skin
Hair falling out
Crushing tiredness
Pins and needles/ tingling in my lower legs
On waking, every tiny joint in my body hurt, even my individual finger joints!
Irregular menstrual cycle

The folate fixed everything. Now I have stopped taking it, my skin is getting worse, I am aching again and my cycle is all over the place. Sigh. Still, my results should be back by Friday, so we'll see what they say. I really hope you start to feel better soon, it's just awful to feel like this and have a GP that is dismissive.

@OdeToBarney

That's interesting re: hashimotos. I did have an antibody test but they said it was negative, they did run other autoimmune tests but all came back as N/A and the doc said normal but I will clarify with my normal doc when I get in to see them as when other tests came back as N/A it means either they weren't run or were unable to be run.

I read on NHS that its normal to retest so not sure what he was spouting to be honest once again something I want to recheck in a few weeks when I see the doc whose been with me through this 'journey'

I'm sorry about all your symptoms I can sympathise with you. It just feels like your body is against you! Since having this stuff just feels like my whole body is rebelling for lack of a better word as I got infected eczema and 2 fungal nail infections in my big toes which I've never ever had before! The exhaustion is the one that gets me as I love my job and have kept quiet about what is going on with me as I just push through at work and then collapse at home. I'm looking at what lifestyle changes I can make and also alternative therapies (as at this point I am willing to try anything). However, I do know there is no magic cure for this just patience and if it is the hypothyroidism getting my dose at the correct level.

I'm glad the folate fixed everything but sorry to hear it's backed once stopping. The doc did mention to me that he would recommend I should always be taking over the counter supplements anyway - maybe this is something you can do?

Thanks for your well wishes I hope you get some answers on Friday - please keep me updated!

@Extremefatigue24 I am still taking ferrous fumerate but I haven't been taking an OTC folic acid because the dose is so tiny compared with the 5mg prescribed, but maybe I should? I will let you know how I get on once my results are back - no follow up with GP as told I didn't need to book one "at this time" so we'll see...

@Extremefatigue24 did you ever find out what was causing your symptoms last year? I have virtually identical blood results (along with the infected toenails!!) and the exhaustion/brain fog and memory issues are driving me insane.

@Boysworld I wish I could say yes, but it's now been a year, and I'm still trying to find out more. I was diagnosed with hypothyroidism, so I am now on Levothyroxine permanently.

However, I am getting infection after infection since October I've had 3 lots of antibiotics and just seem to get illness after illness and my eczema on my hands has flare up after flare up with infections.

My folate has dropped even more and this is after my 4 month intensive course last year. My lightheadedness has been very bad so while it might related to the folate my GP sent me to have brain and IAMS (auditory) MRI scan to check that.

I've also now been referred to gastro to have a camera put down my throat to see if we can find out why I am not absorbing my folate as after my course it shouldn't have got worse and my calprotectin results came back normal suggesting no inflammation.

So basically I am still on a journey. I will be honest I am feeling it's all connected to my thyroid but because I am now within range they are not bothered.

It's still very frustrating and it's affecting me on so many levels. However, I am just going through what the doctor says and noting everything I feel so we can see if we can get to the bottom of it all. I do feel like I'm a pain in the ass to the GP but I know my body and something is just not right with it.

Feel free to DM me and I can see if there is anything else I can help you with!

Hey OP @Extremefatigue24, sorry if this is a zombie thread and you're all better now (hopefully so!), but I was reading through and your post concerned me.
Have they biopsied the lymph node? I think ruling out lymphoma would be important x

@GloriousBlue no it’s still on going. The exhaustion has reached a whole new level and affecting my work now. I upped my thyroid medication but will be getting bloods to see how the levels are now.
going back to gp tomorrow for an emergency appointment as like I mentioned the exhaustion has just got to an unsustainable level in my life.

It sounds very similar to my long Covid. Before it floored me, I got infection after infection till one day I woke up and was basically bedridden. Doctors have been hopeless. I hope for your sake it isn’t that but if it is something like this, the best thing you can do is to really scale back everything and rest as much as possible. Keep pushing for the tests in case it’s something they missed.

I’m so glad I found this thread as I am exactly the same. I’m on folic acid but makes no difference.last week I went to A&E thinking I was having a heartattack but it’s the palpitations from being low in folic etc. need to get back in for bloods as I can’t cope with this daytime tiredness.