low folate

[Angie10116]

hi all, I’m sorry for another post. I’ve just been to the doctor. He will check my stool but said my folate as low. 3.4 (range 3.00- 17.00). Could this be the culprit? Extreme extreme tiredness, very bad headaches, weakness, feeling low, irritability. Hot flushes..

[TiggerMe Ambassador]

Low folate certainly makes you feel 💩 have you had any other tests done? Chances are you are going to be low in B12, Vit D and ferritin which all add to the crappiness 😕

[Angie10116 in reply to TiggerMe]

My b12 is 390 ( 180- 900) and my D is 62. I don’t have range for the one. Iron was 130 I think, or that might’ve been Ferritin, apologies I’m not sure

[Buddy195 Administrator in reply to Angie10116]

Ask your GP for a print out of all results and ranges of recent tests. It is so easy to get mixed up if they are provided verbally. Remember, you are legally entitled to copies of all tests (but it may take a couple of days for the GP admin to have them available).

[Confused01 in reply to Buddy195]

If not already, sign up to your PatientAccess . You can then access your gp records, including blood test results.

[Angie10116 in reply to Confused01]

I didn’t know that’s possible, thank you!

[Confused01 in reply to Angie10116]

It’s very helpful as you can follow. Be warned, dependant on how efficient your gp’s admin is to records being up to date and correct. If you have ongoing issues maybe screen shot appropriate results, or print.

[Buddy195 Administrator in reply to Confused01]

I think you meant to reply to Angie10116

[destiny234 in reply to Confused01]

Not if you are in Scotland unfortunately, they make it difficult to get your results in writing, and certainly can`t see them online, it`s crazy.

[Confused01 in reply to destiny234]

That’s a shame…it’s one of a very few good services nhs England….otherwise on its knees .

[destiny234 in reply to Confused01]

when I asked why ( I’ve just moved up from England ) the doctor said “it’s for the best ‘ !

[Confused01 in reply to destiny234]

Do you mean why they don’t offer PatientAccess?

[destiny234 in reply to Confused01]

yes, I said to the doctor that I could see all my health history online on patient access in England. He said , ‘we don’t have that up here and it’s just as well ‘. I couldn’t believe what I was hearing! You have to insist on seeing your records , then they post out a paper form to sign , and eventually you get a paper reply. It takes forever.

[Confused01 in reply to destiny234]

Wow…that’s crazy as it benefits patients and GP surgeries surely 🤷🏻‍♀️

[destiny234 in reply to Confused01]

I know, I think they mean that patients will be constantly at the doctors having seen their results (of blood tests for instance), but surely we have to look after ourselves nowadays as they certainly don’t (not all I should add)

[Confused01 in reply to destiny234]

They should be looking at it as a good thing as it can save them time example…results come back normal etc. And removes all the admin time to provide requests results and records. Same for patients. If the same as England, 99% of GP surgeries are like independent businesses that just contract to nhs. Therefore the surgery has a choice in what facilities to pay for etc. Could be yours don’t want to provide this service by their choice..maybe.

[birkie in reply to destiny234]

Yes my gp hid all my high calciums from me.. One being 2.89..I requested my medical records in 2020 and found countless over range calciums.I saw a private parathyroid surgeon in 2022 who looked over them, he asked "why my gp didn't do any parathyroid hormone with these high calciums" I told him I had no idea I had these high calciums until 2020 gp never told me🤦‍♀️

So I would have loved to have had that app on my phone to look over my results 👍 BTW it took months to acquire the flipping medical records 😡

[destiny234 in reply to birkie]

Sorry to hear that , it is disgraceful . Where are you based ?

[birkie in reply to destiny234]

Flipping Cumbria, I saw another post a few days ago by a member who also mentioned Cumbria 🤷‍♀️ it's really awful up here, it took my gp over a year to Diagnose me with an overactive thyroid 😡blamed the menupause 😡 I actually had graves thyrotoxicosis, lost the thyroid, and I blame my gp for that, he actually had a report from an endocrinologist (which I found in the records) saying.. "this lady has 2 suppressed TSH" (blood tests) "she also has thyroditis"."subclinical hyperthyroidism"

Please do regular thyroid blood panels to keep an eye on her TSH"

He never did.. Not one thyroid blood test after that report, both myself and my son went through all the paperwork and found no thyroid bloods😡

[destiny234 in reply to birkie]

There’s grounds for malpractice there, but who wants the stress of it all, and we rarely win as they look after their own

[birkie in reply to destiny234]

I was going to go down that route, not for money but for other patients, but I became ill again 2 months after thyroidectomy took into hospital passing a kidney stone.My calcium came bk as over range, they did parathyroid hormone and that was over to, got a letter saying I probably have primary hyperparathyroidism, then after my calcium went just within range I was dismissed, I told my gp I'd been diagnosed in 2004 with primary hyperparathyroidism and left... So your doing it again 😡 not this time, my son got me to a private parathyroid surgeon, who identified a nodule on the left, saw a specialist in Liverpool who as now diagnosed me with primary hyperparathyroidism 🙌 not one endo up here in Cumbria would admit I had it😡 so I'm afraid I'm not well enough to fight my way out of a wet paper bag, let alone the medical establishment, who do watch there own backs😡😡

And it shows you just how stuck up these endocrinologists can be, because this endo I saw on Dec 27th 2023, was one of the click that said I don't have primary hyperparathyroidism, I showed her the letter of diagnosis from Liverpool, she said "look I think you should see this endo if she's so sure you have it" (she's a surgeon not an endocrinologist you nut!) talk about having her nose pushed out of joint🤣 it gave me great pleasure showing her that letter🤗... Think I may just get it framed 😂

[destiny234 in reply to birkie]

I bet it makes you want to relocate! So sorry to hear of all your troubles, stay strong xx

[TiggerMe Ambassador in reply to Angie10116]

Last one is likely ferritin, which can be a bit misleading as it rises if you have any inflammation or infection... so with the other 2 that low you are going to feel more like curling under a blanket than going for a walk... you could try taking a loading dose of both to get things moving and then lower the dose

This is useful.... you are looking to get to 100-150 grassrootshealth.net/projec...

[Angie10116 in reply to TiggerMe]

I think my ferritin and D is okay, b12 is lower and folate is low. Thank you for the reassurance

[TiggerMe Ambassador in reply to Angie10116]

If this is an NHS Vit D result then you'd fall into sufficient, if you want to optimise then 100-150 is recommended with a top end of 250... generally at this time of year we all need to supplement and us Hypo often need a little extra 🤗 we need good levels of Vit D to convert the T4 into fT3

[Angie10116 in reply to TiggerMe]

Thank you for explaining 😊I appreciate it

[SlowDragon Administrator]

low B12 and low folate extremely common on replacement thyroid hormones

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This will also help keep all B vitamins in balance

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[Angie10116 in reply to SlowDragon]

can I please ask, the doc prescribed me 5mg of folic acid to get my levels up. The Igennus b complex only has 400mcg (0.4mg). I told my doctor I take this one and he told me to ita not a high enough dose and he’s never heard of methyl folate. Told me to take the folic acid instead. I’m feeling stuck as not sure which one to take.

[Angie10116 in reply to SlowDragon]

Also I just read that taking folic acid when low in b12 can cause neurological symptoms. I was tested for pernicious anemia and test came back clear. Am I safe to takin folic acid when my b12 is 350?

[SlowDragon Administrator in reply to Angie10116]

You should be starting B12 first ….then after 3-4 days add folic acid

When you finish folic acid prescription, take daily vitamin B complex going forward

[Angie10116 in reply to SlowDragon]

Thank you. And for the b12, sublinguals are okay I presume? 1000ug of methyl b12? Thank you for your time around Christmas, I really appreciate it.

[SlowDragon Administrator in reply to Angie10116]

You could take 2 or 3 per day of B12 sublingual 1000ug initially

[Angie10116 in reply to SlowDragon]

Thank you. I don’t know why I’m scared of taking higher doses. My health anxiety isn’t doing great rn! Hence all the questions…

So to confirm, 2000-3000ug of methyl b12 and start 5mg of folic acid tomorrow.

[SlowDragon Administrator in reply to Angie10116]

Yes assuming you have been taking B12 for a few days already

[Angie10116 in reply to SlowDragon]

Yes I have. Wonderful thank you very much

[FancyPants54 in reply to Angie10116]

Don’t worry about high levels of B12. It’s a water soluble vitamin. If you take too much your body just expels it through your pee. I inject 1mg every other day because I have neurological symptoms. It’s fine. You won’t get even close to that level of dosing with oral. You are safe.

Your doctor not having heard of methyl folate means nothing. They have barely heard of thyroid!

[Angie10116 in reply to FancyPants54]

thank you for the reassurance. There’s soo much information, it’s soo overwhelming and scary at times, especially when you don’t feel well

[FancyPants54 in reply to Angie10116]

We have all been there sadly. Learn in small chunks.

[Katherine123]

Hi Angie, I am similar to you. Your B12 is low and needs further checks. With a folate that low you will not be absorbing your B12 properly. Low folate will make you feel crap and along with possibly not absorbing your B12, a double crap If it was me I would start bringing my folate up. I am not able to absorb the chemically made folic acid from doctors. I had to go on natural high dose folate 5000 mcg once a day. Once you start bringing up your folate your B12 will go down more as it is being use. I would suggest, if it was me you then have another B12 test in 6 weeks time. I am sure you need B12 as well with those results. I do not absorb B12 tablet form and had to go on B12 injections.

[Angie10116 in reply to Katherine123]

Hi Katherine, thank you so much. Can I ask what kind of symptoms you went through with low levels? I’m taking 2000mcg of b12 per day and have incorporated 5mg of folic acid today. I will retest end of Jan. Thank you very much 😁

[Katherine123 in reply to Angie10116]

Hi Angie, as you are now taking 2000mcg of B12, your next B12 results will be invalid as B12 hangs in the blood and it will show high. Even though you may be low B12 is a funny thing. If it was me, I would just go with the high dose 5mgs of folic acid at the moment. Leaving off the B12. This will give you a more accurate B12 picture when you test again. I had to change from 5mgs folic acid to 5 mgs natural folate, but that is me, I could not absorb folic acid. Low folate made me lack in energy, sleep not good, and it caused me anxiety. A lot of anxiety is due to low folate, or low B12, or low B2, or thiamine B1. Folate is responsible for DNA repair.

[Angie10116 in reply to Katherine123]

Thank you Katherine. I’m worried about stopping b12 because I have a lot of mental symptoms from low b12 , I had the same a few years ago. I’m worried that it will drop even more and I’m starting a new job next month, I need to be able to work. Not sure what to do

[Katherine123 in reply to Angie10116]

If you are absorbing the B12 and it is making you better, then you could be ok. I could not absorb it. I could the Jarrows high dose sublingual B12's that you dissolve under your tongue. Unfortunately although they were 5000mcg, you only absorb a little bit of it. I was popping them all day long. How was your MCV's, MCHC's and MCH's on your complete blood count?

[Angie10116 in reply to Katherine123]

Yes I think I’ll stay on it for now. I’m not sure what those are! Doc said all okay

[Mixteca in reply to Angie10116]

The doc has no knowledge of such things and best ignored. Any B12 questions best asked on the PAS forum - it's their forte. 😉

[Angie10116 in reply to Mixteca]

Thank you 😄

[Katherine123 in reply to Angie10116]

You need to get print outs of your complete blood test counts. Then post them here. It will allow for a more thorough look as some doctors are a little lacking in this department. I have high MCV's, MCHC's and MCH's these all mean the size of your blood cells and how they are carrying oxygen around in your body. They show what type of anemia you may have. Mine are all over range I have megaloblastic anemia due to B12, folate and hypothyroid.

[Angie10116 in reply to Katherine123]

Thank you Katherine. I shall keep taking the vitamins for now, then in a month or two I’ll get tests and post in here. Thank you!

[HistyFit]

I’d strongly encourage you to ask for an MTHFR gene mutation lab test. It’s a mutation that makes you poor or unable to process Folic Acid and un methylated Folate. If you’re not getting methyl folate the folic acid builds up in your system and the symptoms are all very similar to what you listed. It can become serious if allowed to go on like that.

[Angie10116 in reply to HistyFit]

Thank you. I don’t think they’d offer this on the nhs tbh, but I have been taking methylated versions so all good!

[HistyFit in reply to Angie10116]

My doctor who I consulted with about this is a neurological nurse. She said to get any benefit it has to be between 5-15mg and you can’t jump up to 15 or you could get a manic episode. It needs titrating.

[Angie10116 in reply to HistyFit]

5-15 methylated folate?

[HistyFit in reply to Angie10116]

also you can order this test on your own at an independent lab if you wanted it.

[Angie10116 in reply to HistyFit]

Yeah I have heard about it but it’s very expensive

[HistyFit in reply to Angie10116]

It’s a pretty serious condition that can lead to heart problems and dementia and worth checking into. It’s so easily managed if it is the case. Bring it to your PCP and see what they say.

[Angie10116 in reply to HistyFit]

I will, thank you!

[Riggles46]

m son was low in folate. He took the he methylated version as it’s easier for the body to absorb. If your folate is low then I would advise you take B12 too as they go hand in hand and if your active B12 is not at your optimal level your folate supplements will not be efficiently absorbed and it will be pretty pointless taking. I would also take vitamin D for a few months too.