Evening everyone I’m just wondering if anyone has any advice/experience with folate deficiency please? This is the third time my folate has dropped <2 I’m on my 2nd month (of 4 month prescription) of Folic Acid (5mg daily) but to be honest I still feel quite poorly, dizzy/off balance, extremely tired and forgetful, anxious and just generally fed up.
I’ve spoke to my GP to see if we can get to the bottom of why it keeps dropping, the only thing he suggested was to monitor me more closely instead of waiting for me to feel ill before testing again. Oh and he did a blood test for coeliac which came back “normal” I did mention about the MTHFR gene mutation but he didn’t seem to have a clue what I was talking about!
My last TSH was 0.45, (100mcg levothyroxine daily)
B12 “normal”
I want to swap from Folic Acid to methyl folate but I’m just not sure what amount I should take? Any suggestions welcome 🤗
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Shazy-B
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I had what my GP described as 'practically no folate' and other than the standard 5mg a day nobody seems remotely worried and I struggled to find support
I'm not a medical professional and therefore can only share what I've learned the hard way, so please do look into this very carefully because I'm not in any way qualified to advise anyone. If someone more experience d than me offers you advice, take it!!
The brain fog from low folate is enormous, when due a jab I'm losing words mid sentence, have diarrhea and can't sleep. Happy to share my own experience but it's only how I manage my own health.
The max you can take orally is 20mg a day, so you could also safely try doubling your oral folate, I tried that first and it helped a little. All of this was on my own bat and from reading. I was better on 10mg, taken in 2 5 mg doses, one morning, one at night.
Also you can buy methyl folate on Amazon and try that, you don't need your GPs permission to take that instead. Make sure you still take at least 5mg, I read you could take less of methyl but struggled big time when I tried it. If you think your 5mg folate is doing nothing, try switching to 1mg methyl folate, because it feels like you have been slapped by a panda!
A lot of people don't fare well on methyl, it can increase mental health symptoms so just be aware of how you and your body respond. It's also expensive.
My Mum was on regular folate injections although she died when I was young, so I knew they existed. I tried oral methyl folate but didn't really get much more benefit from that. The MTFHR question got a blank look and MY GP didn't know you could even get folate jabs.
I was already SI B12 but I couldn't find anyone who could give me guidance or a protocol to follow for folate deficiency other than a 5mg a day oral dose.
My GP seems to think if you take enough you will absorb some even if you have malabsorption -despie ulcers, 10 years of oneprazole and an inherited b12d. It seems folate is even less understood.
It's not one size fits all when treating PA and folate deficiency but sadly the medical approach to pa is often exactly that.
In the end I gave up on looking for answers from the GP and decided if it had worked for Mum it may work for me. I ordered strong folate jabs along with my b12 from Germany and that has worked for me, but it was daunting without support or guidance as to dosage, translating from German I found a recommendation of every 1-2 weeks. Thankfully they really help, and therefore I set the frequency by symptoms.
They are called folsaure hevert and need to be done via IM rather than SC. I hate IM and tried SC but it came up in a large lump so don't try it! I started on twice weekly as it hits me like a ton of bricks when they wear off, but now do them around every 10 days as my symptoms have really improved. Whereas B12 is a gradual deterioration the impact of low folate is massive and fast. My other half notices the mental slowness, slurred speech and struggle to recall words, it's quite noticeable.
I hope this helps - again, it's only what I have found myself in managing my own folate deficiency and if you find someone with more knowledge or experience please listen and share with me, as it's very difficult to manage, I was terrified the first time I jabbed folate because I couldn't find anyone else who had done it!
Shazy-B - if your folate levels keep dropping despite good dietary intake that would suggest a folate absorption problem.Having an absorption problem with folate makes it extremely likely that you have an absorption problem with B12.
If you have a previous B12 test and it was significantly higher than the current one (ie 20% higher), that would be evidence that you have a B12 absorption problem and your levels are starting to drop below the level you particularly need to make sure enough B12 is getting into cells.
MTHFR is the gene that controls one particular protein used to run processes using folate in your cells. Some variants make this process less efficient. It won't explain the absorption problem and why your serum folate levels keep dropping - that's back to an absorption problem.
Suggest you refer your GP to the BCSH guidelines on cobalamin and folate disorders which can be found here
Also I’d like to add that you enquire about your B12 results which you say was “normal” .Have you a copy of your results? I was told that my B12 serum test was normal , but I eventually found out that it was below range . ….
It is possible to have B12 deficiency symptoms with a normal range serum b12 result although some GPs may not be aware of this.
I have read that if a patient is getting folate treatment then it's vital that any co-existing B12 deficiency is treated as well or there is a risk of causing neurological problems.
In a patient with both B12 deficiency and folate deficiency, treatment for the B12 deficiency would usually be started first.
The best advice I ever got was to always get copies of or access to blood test results.
I am one of the ones who despite being told everything was normal on several occasions, found some abnormal and borderline results when I got copies.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency and Folate deficiency.
Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I had severe B12 deficiency with dementia and spinal symptoms with all my serum B12 results apart from one, well within normal range eg 300 - 500 ng/L
Best advice I ever got was to always check blood test results. I was told everything was normal and when I checked some of the results weren't normal.
UK guidance suggests that people who have the symptoms of B12 deficiency should be treated even if serum (total) b12 is within normal range. See BNF, BSH and NICE CKS links in my other reply on this thread.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
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