Morning all I hope everyone is well! So what a palava I’m having at the moment to cut a long story short my migraines have been getting progressively worse since October to the point I had to attend A&E on Thursday, I was awoken at 6.30am with the most horrendous pain in the left side of my head and could hardly stand because I was so nauseous and dizzy. I have had this previously on the right side also waking me at 3 am but without the nausea/dizziness and it was suggested it could be occipital neuralgia. This pain is different to my classical migraine with aura symptoms which I’ve been having once/twice per week additionally.
On my last 3 visits to my GP and also the A&E attendance my blood pressure has been extremely high which is very unusual for me as it’s usually on the low side of anything. I’m wondering if anyone knows much about folate deficiency and whether this could be causing my problems?
A&E
Right 167/101
Left 103/101
I was tested privately in October and it came back as deficient but my GP insisted it was normal. I was tested again (NHS) 2 weeks ago and low and behold it has come back as deficient 2.8 so I am now on 5mg of folic acid again, the same thing happened last year and I had to supplement for 4 months then too.
My TSH has gradually gone back down to 1 after being put back on 100mcg from 75mcg, I was thought to be over medicated as my TSH was suppressed at 0.25 so my GP in her wisdom thought it necessary to reduce my dose...to my detriment I feel!
Any advice is much appreciated and very welcome, I’m really fed up of feeling so ill at the moment this has gone on for so long.
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Shazy-B
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The discussion has gone beyond masking B12 deficiency - which it can do. It is also suspected of precipitating subacute combined degeneration of the spinal cord.
Are you saying that you were on 5 milligrams of folic acid/folate last year for four months. Then stopped?
If so, I cannot understand why you were not advised to continue with the "safe" dose of 400 micrograms a day indefinitely.
High doses of folic acid/folate can cause many problems and should only be prescribed when absolutely needed. But most of us can take 400 micrograms a day without any problems. Doing so helps to maintain a reasonable level and can be continued pretty much forever.
I was taking 5mg of folic acid from January to April last year and wasn’t tested again until July when I was told it was normal again (10) then gradually I have become more unwell since the beginning of October. I was never advised to take a maintenance dose.
High dose - with the possibility of side effects. Then nothing. Then high dose again.
I'm trying not to make assumptions, but it is at least feasible that a maintenance dose (typically 400 micrograms a day) would have kept your folate level up. It would not usually be prescribed at that level but is available as one of the least expensive supplements in supermarkets. For example, Morrisons:
Valupak Folic Acid 400ug Tablets 90 per pack £1
After all, it is likely you were not getting enough from your diet when you started the high dose (for whatever reasons - not pointing my finger at you) otherwise you would not have needed that prescription. So it stands to reason your level will drop when you stop.
I don’t recall any side effects when taking the folic acid last time, I’ve only been back in them for about a week at the moment and I’m not sure now whether they’re causing the issues or if it’s my raised blood pressure. I’ve had a headache (tight band around my head) since the incident on Thursday. I would honestly be lost if not dead without this forum! I have no faith or trust in GP’s with my health anymore 😔
Folic acid is generally well tolerated although the following side effects have been reported:
Blood and lymphatic system disorders:
Folic acid may worsen the symptoms of co-existing vitamin B12 deficiency and should never be used to treat anaemia without a full investigation of the cause.
Bear in mind, B12 ranges tend to go quite a lot higher than "absolutely fine". Largely because there is no issue with B12 being high until it reaches the "very high" area when it could indicate various issues.
When adequately treated on levothyroxine TSH is frequently below range. Never agree to dose reduction based just on TSH. If Ft3 wasn’t over range you weren’t over medicated
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
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
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