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What would you recommend for a good folate supplementation?

Chancery profile image
45 Replies

Hi, I suspect I'm running low on folate and I'm going to discuss supplementing it with my doc tomorrow. I suspect my doc won't have a clue about low folate, or what to prescribe, so what would everyone recommend as a good dose to help my B12 shots work well?

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Chancery profile image
Chancery
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45 Replies

Hi Chancery ,

I am absolutely sure your GP will know about folic acid and what it may do to your current meds. Folic acid 5 mg is prescribed for those who are deficient and then only for 4 months, as in the end to much folic acid (the artificial form, not the natural form found in veg etc) stays un metabolised in the body and it is currently not conclusively known if that does harm, but some research implies harm.

See:

emedicine.medscape.com/arti...

"•Formerly cited evidence regarding the role of folate in the prevention of cancer is now being heavily questioned in the medical literature; increasing evidence suggests folic acid supplementation may increase cancer risk[7, 8, 9, 10, 11, 12]

Folic acid supplementation clearly has significant public health implications. This article explores the mechanisms and manifestations behind folate deficiency, as well as its ramifications with regard to health and disease at large. "

Considerring you are on anti convulsion meds (these are folate antagonists I believe) you serum folate at 7 point something is not to low with the ref range you supplied if I remember rightly.

Please be aware I am very cautious, will always make sure I do not go out of any ref range for normal, and will try to get what ever I need from natural foods, so hence my reply to you, believing its safer for you to get GPs advice on this as you are not deficient.

Many others here may be far more assertive and believe in far more aggressive treatment, and it has helped them, so I am not saying I am right, I am not right, just would not give you any other advice than what I'd do.

Kind regards,

Marre.

Chancery profile image
Chancery in reply to

Thanks Marre, I appreciate your concern. Don't worry, I won't take it if the doc says no (sounds like 'the computer says no'!). As far as my research has so far revealed, folate is only dangerous to pregnant women on anti-convulsants, as it causes birth defects. I am so not pregnant there isn't a name for it, so I should be safe.

No, I was just more interested in what those who had needed to supplement found to be a useful dose. Although I'm (pretty) sure my doc will have heard of folic acid, I seriously doubt if he will know what a good supplementation might be for B12 deficiency so thought I might get a heads-up from the experts here, and you have indeed stepped up to the plate. 5mg gives me a ballpark figure to go in with tomorrow, so thanks again!

Clutter profile image
Clutter in reply to Chancery

Chancery, my folate was deficient and I was prescribed 5mg folic acid for 4 weeks. When retested 4 weeks after the prescription stopped folate was good in range. NHS don't prescribe unless you are deficient but you can buy 400mcg folic acid or methylfolate or used a B complex to get the RDA of folic acid.

Chancery profile image
Chancery in reply to Clutter

Hi Clutter, thanks for confirming Marre's recommendation. If the doc thinks it's ok, I'll skip, but it's good to know anyway, just in case.

in reply to Chancery

5mg folic acid tabs is only available on prescription in UK, given when you are folate deficient and then only for a SHORT TIME.

Chancery profile image
Chancery in reply to

Hi Marre, saw the doc today and he was of the opinion that my folic acid was fine, as per the last test results, but there was no harm in me taking tabs if I wanted to. There was no way he would prescribe them so I bought a simple multivitamin that has 200ug of folic acid and I'm taking that twice a day, for no longer than four months - marked on the calendar! I reckon that way I'm erring on the side of caution both ways - not doing my body out of it but not overdosing on it either. Hopefully going for a middle of the road approach will be effective.

By the by, I was right about the injections. He wants to put me on maintenance shots at the end of my three week shot-loading. I think I can get him to give me them bi-monthly, but that's my lot. It was very depressing and frankly makes me want to top myself. It was ever thus.......

pvanderaa profile image
pvanderaa

To hold you over till you get your Folic Acid supplements: Eat Green leafy veggies: Kale, Brussels Sprouts - These are full of natural folates. Also these have other good things that don't come in the purified supplements.

Chancery profile image
Chancery in reply to pvanderaa

Ooh, I'm a big sprouts fan - that won't be any grief for me!

Lindylanka profile image
Lindylanka

Wow, I knew there were problems with folate supplementation, and actually stopped taking my 5 mg daily prescribed tablet some months ago to see whether I would feel better for it after reading here. A lot of brain fog disappeared within a couple of weeks.

I had been taking it daily since spring 2011 and when I have discussed b12 issues with my practice they've always said it's important to continue the supplementation. They've kept it on repeat for me. So not all GP s do know about this either. Very concerning. The first part of this year is a complete haze to me, I am presuming that the folate supplementation would have been worsening my b12 deficiency, as I am on bimonthly shots?

in reply to Lindylanka

Hi Lindylanka ,

Re:" The first part of this year is a complete haze to me, I am presuming that the folate supplementation would have been worsening my b12 deficiency, as I am on bimonthly shots?" I can not see why you are drawing that conclusion? Normally a good supply of B12/ folate/ iron is needed for good blood production, having to much of one and not enough of the other may cause a problem. If you are on prescribed folic acid then I assume you need it? You mau be on other meds that may deplete your body of folate? Read you are on Parkinson forum, perhaps its those meds?

If you are not sure why you are on folic acid tabs then you should ask your GP and if necessary have a blood test to see what your levels are perhaps?

Kind regards,

Marre.

Lindylanka profile image
Lindylanka in reply to

Hi Marre, and thanks for your reply. When diagnosed with b12 def. which was at the time explained to me as PA I was folate deficient too I was put on a b12 injection for three weeks, this was in March 2011. I had no effects from either that I could discern, but continued through several three monthly injections and felt different. I've written about this before, and am trying to keep this short. basicly I got worse and came to understand this was because what i thought was a worsening of my long term Parkinson's was actually a result of lack of b12. I fought for aand was allowed every other day shots which really got me a lot better. Then they stopped them. Through all this I was taking the same amount of folate but have not as far as I know been retested for folate deficiency. My every other day shots were discontinued a year ago, I have had four shots in that time. On a hunch I discontinued the folate for all but the two weeks immediately after my summer shot and the fog almost all lifted. The fatigue didn't. I get about four good day from a shot and then the benefit tapers off very quickly. The fatigue is unbelievable - unless, I guess you've had this problem. So three years on folate with no monitoring. Yet a post on this thread mentions 4 months as a suitable time to take it.

I've been hard hit by this thing, I'm pretty much housebound, and unable to do most ordinary household tasks. I can walk with difficulty, but balance is haywire. I recently discussed this with my neuro, and while he is not that sure about b12 he agreed to ask my GP to give me a shot a week for three months. My gp has blocked this and is questioning it. Dreading Christmas because I'm not due any more till the 29th, and dreading the spring because my brother has bought me tickets for the trip of a lifetime, to see my family in my other home, perhaps for the last time as I'm in my mid sixties, and life on a sofa isn't exactly helping my general health.

I guess what I'm saying about the folate is that I was more fatigued and fuddled with taking it all the time, so perhaps it was using up what little b12 was still around.

I know what the other options are but can't get anyone to teach me,mand given I have other longterm treatment going on really want the blessing of my doctors and a decent record of my deficiency to follow me.

My apologies to the person who started this folate discussion.

Poppet11 profile image
Poppet11 in reply to Lindylanka

Oh, for crying out loud. What a ..... mess!

Did you know the Michael J Fox Foundation, has, for the last couple of years, been researching the links between b12 deficiency and Parkinson's?

You know why you have landed in this mess?

Because they don't understand what b12 deficiency does, that's why!!!!!!!!

None of them. Absolutely none of them.

... and, science aside, if people listened to patients and believed them, this garbage wouldn't be allowed to happen.

You go to a GP, you get your b12 and you tell them it makes you feel better, so they stop the b12.

You get another recommendation for it and the GP vetos it!

Marvellous.

You need to go back to your doctor armed with the BMJ article. You tell him to read through the lot of it online and he needs to read the Responses section and CME comments section.

BMJ online

Vitamin B12 deficiency

Hunt, Harrington and Robinson

4th September 2014.

It only talks about the metabolic processes and diagnostics but it does give a basic disclaimer regarding the current treatment regimen - which you can see the research team basically think is a crock.

When it comes to folic acid -

Folic acid is not folate. Folic acid is the synthethic version of folate - it is not metabolized in the same way. Neither is folate metabolized in the same way as B12.

Many people are being advised to take 5mg of folic acid per day when they go on to b12 treatment. Some are told for how long and others are told indefinitely.

I know, in part, why this mega dose (and it is a mega dose) of folic acid is advised. Yet I don't agree with it and I have substantiated scientific evidence as to why I don't agree.

I too, feel much more foggy on high dose folate and, on the occasions I have tried it, I didn't try for long.

You might want to get re-tested to establish your levels but this whole pig's ear is a juggling act. Each patient is different, each patient sustains different levels of damage - trying to treat everyone the same when it comes to possible permanent neuro injury is ridiculous.

Some patients will have, it has to be said, 'minor' b12 deficiency which is caught in the early stages and the symptoms are primarily those of the fogs, low mood and fatigue. Others won't be picked up until the neuro symptoms are advanced and some neuro damage is permanent. That is PHYSICAL damage. Trying to treat both sets of patients in the same way is negligent.

elkievin profile image
elkievin in reply to Poppet11

Poppet11

I tried to read the article but can only read a couple lines what do you think I'm doing wrong? PA sufferer.

in reply to Lindylanka

Hi Lindylanka ,

Thank you for your reply, now I understand your post and , gosh, you should never be on high doses of folic acid with out B12. I can understand that if they stopped your regular B12 and kept up the 5 mg folic acid daily, then the high folic acid may well be using up the little B12 you may have, and will be masking any signs of B12 def, but allowing the neuro damage of possibly not enough B12 to continue..so yes get serum folate tested, seems to me the best start of seeing how much is to much for you.

I hope for you that you will get more frequent B12 injections, some do find the spray works and injecting subcutain is a lot easier should you wish to look at self treating.

Perhaps have a look at these 2 topics, they may help you further see:

pernicious-anaemia-society....

cmft.nhs.uk/directorates/me...

I hope this helps,

Kind regards,

Marre.

Lindylanka profile image
Lindylanka in reply to

ThankyouMarre and Poppet11. Yes it is a mess. There is also the evidence based approach, which I think plays into the B12 situation. I've just spoken to my GP, and from her point of view they have to satisfy themselves that treatment are safe, effective and that they won't authorise something that might be harmful. And of course because the patient feels it gives benefit isn't enough. I can see the dilemmas that are there for them. Which is why if I do get this trial three months I hope to use the b12 app and one for Parkinson's to track what happens to me. This should create at least some personal evidence. I've had contact with the fox foundation, there is some evidence that it is helpful for Parkinson's, but it has also been found that the two medications I take are implicated in some way in higher levels of folate and b12 def in Pwparkinsons.especially in older people.

I will know next week whether my practice will allow my to have this trial. I'm trying not to think further than then, in reality I havent a clue, as i kkow they won't teach me and I haven't found anyone who can.

Thanks also for confirming what I thought about folate. When I read up on it I was bemused that it is prescribed with no limits, it seems more problematic than b12.

.

Best wishes

Lindylanka.

pvanderaa profile image
pvanderaa in reply to Lindylanka

I think 5 mg is it maximum Folic Acid anyone should be taking with a full B12 injection. I believe you can overdose on too much Folic Acid.

Right now for me at 1ml Cyano-B12 per week, I can only handle around 2.4 mg per day. Any more than this I get thumping in my ears when I awake and sit up in bed.

It is a balancing act between B12 and Folic Acid. I've found that taking the 1.6 mg Folic Acid every morning and along 800 mcg with the evening injection works for me.

That said, if I see any red patches reappearing on my tongue, I take extra Folic Acid. Till they go away. This only seems to happen if I get too stressed or too much sunlight as I've also become photosensitive since taking a lot of B12.

Chancery profile image
Chancery in reply to pvanderaa

Ah... ah, red patches on the tongue! Forgive my excitement, but maybe you can help me here. I have the most hellish sore tongue. I've had it for about a week now and it will not let up. I wondered if it was something to do with B12 or folic acid. I'm only taking teeny OTC doses of folic acid, albeit twice a day when they are only supposed to be once a day. Do you know what might be causing it? It feels cracked and raw although I can't see anything wrong with the damn thing. Really hurts though. It feels like I've eaten a pound of pear drops without stopping - those rough ones with sugar coatings!

pvanderaa profile image
pvanderaa in reply to Chancery

Chancery,

Speak of the devil. Yesterday I cleaned the outside of several windows. It was just a real "quick" job so I didn't bother to apply subscreen. But, I guess I got too much sunlight.

Last night I had my injection and took an extra 1.6 mg of folic acid with my multivitamin. This morning I took my normal 2.0 mg of folic acid. I had a fairly easy day so I don't think I was too stressed. I drank a couple of large cups of coffee with sugar and had some chocolates. Breakfast and lunch were normal.

I started having the first of three bouts of diarrhea around noon. This was the first indication that something was unusual today. This evening on the drive home (about 24 hours after the sunlight exposure), two red oval spots appeared on the left side of my tongue.

Deep red cuts - I don't get these. I only get the geographic red patches. The only thing I know of to get rid of them is more B12, Folic Acid and time for the surface of the tongue to heal.

Since I'm not due for another injection for two more days, if the red patches are painful tomorrow, I'll take a couple methyl-B12 sublinguals.

I'm thinking some cookies I baked last night had milk chocolate chips. I had a few last night and a fewer more as a mid-morning snack. The cause of the diarrhea was probably two fold. Detoxification from the sunlight and the casein in the milk chocolate.

My folic acid is also OTC in two forms. 600 mcg gel caps with DHA and 400 mcg pills. I typically take two of each in the morning to get 2.0 mg.

Thanks,

Paul

Chancery profile image
Chancery in reply to pvanderaa

I'm fascinated, Paul - what do you mean "detoxification from the sunlight"?

P.S. I'm sure it's a coincidence, but your day yesterday sounds like you live off chocolate!

pvanderaa profile image
pvanderaa in reply to Chancery

I figure that B12 (some version of it in the body) decomposes under my skin in the presence of UV light from the sun. The photosensitivity started once I started getting the B12 injections so I'm pretty sure it is the B12.

If I get too much sun, I get hives about 6 hours later. These places then turn into eczema which immediately flares up when exposed to the sun again. A couple of applications of hydrocortisone the first two days and then sun screen for a month sorts my skin out again.

After exposure to sunlight, I get Brain fog about 24 hours later, which disappears shortly after a bout of diarrhea.

If I take B12 and folic acid after exposure, I think it helps sort out the byproducts from the exposure to the sun. With my current schedule, I may get sunlight exposure on Saturday or Sunday. I take my injection on Sunday evening before going to bed

This "detoxification" occurs after getting B12. The metabolism and the liver, I presume, clean the blood and dump the byproducts into the gut. When these get to the large intestine, I get the brain fog until they and finally eliminated by the bowel movement.

Regarding my meals:

I typically have coffee and eat eggs, sausage and salsa for breakfast. Lunch is a meat and rice casserole. I snack on a couple of apples or a packet of ready salted crisps (potato chips).

Unfortunately, if chocolates are available, I'll be sneaking those too.

Chancery profile image
Chancery in reply to pvanderaa

That is surely an interesting theory, Paul. I know B12 injections can cause rashes and itchy skin; I've certainly experienced them, although they are gone by the following day, except for the injection site, which itches for a few days afterwards. But your photosensitive rash sounds a lot more like urticaria, which is an autoimmune disorder. I don't know if you have PA or not, but if you do, you have autoimmune problems anyway, so urticaria is a distinct possibility. It has nothing to do with B12 though, as far as I know, unless by some complicated interaction as yet unmapped. And who wouldn't sneak chocolate if it was about?

pvanderaa profile image
pvanderaa in reply to Chancery

So what is the theory on the decomposition of B12 by UV light? Why is there a warning on the bottle to store it in a dark place.

Chancery profile image
Chancery in reply to pvanderaa

That would be B12 in the bottle, not inside you! Inside you would be quite dark, I imagine. Inside you, B12 will be doing some spectacular things, I am sure, but I can't imagine any of them could be influenced by light on your skin. Skin is fairly impervious to most things, including light, otherwise our internal organs would cook in hot countries! But hey, I'm sure it helps if you have a tan - me, I'm a typical Northern European, if anything is happening to B12 via the skin, I'll be the first to go. Of course, if you clean your windows in the nude, you could really be in trouble...

pvanderaa profile image
pvanderaa in reply to Chancery

Interesting read about the breakdown of B12 by UV light:

forums.phoenixrising.me/ind...

I also looked into urticaria (hives), and talking to my wife, we think I was photosensitive in Aug 2009 which was a couple of months before I was diagnoses with the B12 deficiency. I joined PAS on May 05, 2010.

in reply to pvanderaa

There is some more about B12 and sensitivity to sun light on old PAS forum, see:

pernicious-anaemia-society....

Chancery profile image
Chancery in reply to

Hi Marre. Yep, there seems to be some weird confusion going on in some people's heads about B12's alleged tendency to biodegrade in light and the photosensitivity it causes in skin. Some folk seem to think it is biodegrading inside their skin if they are exposed to light and this is making them come up in rashes. An alarming combination of truths coming up with a bizarre lie, which is then being passed onto others!

Poor Paul had heard it somewhere and was scared to wash his windows. I'm kidding, but it was making life a whole lot more confusing for him. I know how he feels; I've fallen prey to this kind of misinformation more often than I'd care to admit. But I didn't know B12 caused photosensitivity, although I did know about it being unstable in light and heat. I have to say though, that the rashes and itching the shots gave me had nothing to do with light, in this miserable dark-by-half-three Scottish winter!

pvanderaa profile image
pvanderaa in reply to

Marre, The third entry was mine! Thanks for reminding me.

Chancery profile image
Chancery in reply to pvanderaa

Hi Paul, I think looking at your link, and more particularly Marre's, I can see where this confusion about B12 and light is coming from. When people are talking about B12's sensitivity to light they are talking about it in two ways:

1. In the body. Here it affects melatonin production. This means that if you have a big, fat B12 injection then go out in the sun you will get sunburn, or heatstroke or, perhaps, if you are a urticaria or a psoriasis sufferer you will come out in a worse rash than normal. This is because B12 is increasing YOUR photo-sensitivity (in your skin). It's not damaging the B12 - the B12 is damaging you, if you will.

2. B12 in the vial. B12 seems to be degradable by light. That is, if you leave your vial sitting out in sunlight (or maybe even daylight) it will degrade and lose its properties. So effectively you will be injecting nothing but some preservatives and a weak B12 solution, at best. But there does seems to be some uncertainty and debate about how quickly this happens, and some of that discussion seems frankly hysterical. If you keep your ampoules in a box, cool and out of the light they'll be fine.

People seem to have mixed these two things up and got some very weird ideas. What B12 does to you in sunlight is not related to it biodegrading in light. These are two separate things. But you definitely shouldn't be practicing nudism after a shot. That's asking for trouble. And I do wonder what role it might play in urticaria. I suffer from chronic urticaria and have done since the mid nineties. Unfortunately it's the wrong time of year or I could have experimented on myself and reported back to you on how it affected mine. Do you think you might have it then? Tell me your symptoms, if you want, and I'll tell you if it fits. I'm a bloody expert. A very unwilling one!

Chancery profile image
Chancery in reply to pvanderaa

Just read over your original comment about your photosensitivity, Paul, and your symptoms fit sunstroke - the 'brain fog', dia, etc. You will often get a pounding head and nausea too with sunstroke. So rather than a detoxification I'd say you are getting sunstroke. You sound like you are very sensitive to B12's effects in sunlight so I'd stay well out of it after I'd had a shot, if I was you.

pvanderaa profile image
pvanderaa in reply to Chancery

So what really is going on in the body with sun stroke? I can appreciate that B12 makes me more likely to get a sun burn. For me, I think I can handle up to 20 minutes in the fading evening sun without applying any sun screen. The UV intensity is much less in the evening.

Chancery, Thanks for the clarification. We are all still learning every day about this condition.

I get my prescription 4x 1ml bottles at a time. The pharmacy used to put all 4 into a brown pill bottle with a child proof cap. Recently however, they have been issuing them in a ziplock sandwich sized bag with the prescription label stuck to the outside. I transfer them to a brown pill bottle at home and keep them in a drawer. I feel that the fourth 1 ml of B12 is never as "strong" as the first.

This was the case this past week when the red spots reappeared on my tongue. This has been about the third time this year that the spots came back. I injected the fourth vial the next day and they are now starting to fade. I'll need to pay more attention to which of the four I'm using in my log of symptoms in the future.

So back to sun stroke. I figure the UV light reacts with something in the body which causes a chemical reaction and results in the symptoms.

For me, the hives only appear on patches of skin that get exposed to the sun. Even with sunscreen, it typically is the back/top of my hands, where is wears away or is rubbed/washed off where the hives appear. So far nothing in the V of my shirt or on my face. I figure that, since they are always exposed, they have been desensitized.

Thanks,

Paul

Chancery profile image
Chancery in reply to pvanderaa

Sunstroke is just the body overheating. If you are getting it regularly you are either overtaxing yourself regularly or you have had heatstroke before and now have more of a tendency towards it. It occurs more frequently in people with chronic health conditions (and babies and the elderly). What they all share in common is that for one reason or another the body isn't regulating their temperature properly. It also happens through overexertion (like mountain biking up a hill in 86 degree temps) or dehydration (because the body can't cool itself through sweat).

Your urticaria, if that's what you have, is simply being triggered by heat and/or light. Mine's is triggered by both. I get it round my ankles if my feet get hot, no matter what from. This means I can even get it in winter, if my feet are hot. For obvious reasons it's more common in summer. But mine is also triggered by exposure to sun. And I get it occasionally on my chest too, if I've been in bright sun too long. I've also had it triggered by allergic reactions, which is actually what the reaction round my ankles was triggered by originally. I have an Elastoplast allergy - specifically to the adhesives used. I used to get hives on my thumb where I once had an allergic reaction to a plaster. That went on for years any time my hand got hot, and drove me mad, then I realised one year that I hadn't had it in ages, so they can spontaneously go away. Unfortunately the ones I get on my ankles are showing no signs of abating!

I think they are at root an autoimmune reaction. Your body decides to go into overdrive at something it sees as a threat - in my case heat or sun. Some people are VERY unlucky and are actually sensitive to touch, or to certain chemicals or foods. When my brother was a child if he ate anything with raspberries in it one half of his face would come up in a bright red rash. No kidding. But it went away eventually and now he can down raspberries with the best of them.

To my knowledge none of it is related to B12, other than, I suppose, B12 does a lot of different things in the body, so it might regulate something involved; I really don't know. I'm very new to B12 related things, so my knowledge here is limited. But I can say I've never heard of any theory that urticaria is B12 related, so I assume it isn't.

As for your B12 ampoules, I can't see them aging as you fear, UNLESS you expose them to light. I imagine they have a shelf life, yes, but I suspect it's probably pretty long, if they are sealed and kept away from the light. I have an old box from them here in front of me and their expiry date was 9 /2015. What is that? September. So I got these about a month ago, so they would have been good for almost a year. These were probably old stock too, so maybe they're good for longer than that. If you think about it, the company that makes them has to be able to ship them to chemists and have them in stock for same. If they were SO unstable they would have to be treated like fresh produce and kept refrigerated, which they're not. At the end of the day, I think that as long as you are storing them well they are giving you as much of their goodies as the day you first get them - as long as you are not keeping a box past their sell-by date.

Are you injecting yourself? If so how long do you keep a batch for? Not more than a year? Or are these ones you are using for your three-monthly NHS injections?

pvanderaa profile image
pvanderaa in reply to Chancery

I'm currently injecting 1ml of cyano-B12 per week (normal regime in the USA is 1 ml per month). So the 4 vials (rubber stopper bottles) last me one month. I keep them in the drawer. There is no need to refrigerate B12 as it is very stable when heated. I was just observing that some injections don't last as long as others and I plan to monitor if the order on the vials plays any part in this.

Long before I was diagnosed with the B12 deficiency, I did suffer one bout of heat stroke while working the Saudi Arabia. It was around midnight, so no sun, the air temp was still around 100 Deg F. I was walking home from the Rec Center on the compound (about 200 yards) and I fainted. The blood vessels all dilated from the heat and my blood pressure dropped. I awoke looking at the world sideways, totally confused, and a scrape on the side of my face where I had slid against a wall.

Chancery profile image
Chancery in reply to pvanderaa

Hi Paul. Well, there's every reason that bout of heatstroke might have made you more vulnerable to it now. Or it could be you just don't drink enough! Maybe you need a big hat, Australian style, and to always go everywhere with a bottle of water!

pvanderaa profile image
pvanderaa in reply to Chancery

It's actually a panama hat - very stylish too.

Chancery profile image
Chancery in reply to pvanderaa

I think we should totally get a pic of that!

Hillwoman profile image
Hillwoman in reply to Chancery

I wonder if the sensitivity to sunlight is related to SLE, another auto-immune disorder? I've had periodic tests for this and other auto-immune disorders, and was told by a rheumatologist that Lupus, which mainly affects the skin, SLE (the systemic form) and I think also Scleroderma cause sensitivity to UV light which manifests itself in all sorts of ways and makes people feel unwell, sometimes to the point of relapse. Pernicious Anaemia is, of course, an auto-immune condition. If you have one such condition you are, unfortunately, predisposed to develop others. Perhaps this sensitivity to UV light is a warning sign and an indication for further investigation?

Chancery profile image
Chancery in reply to Hillwoman

I don't know, Hillwoman, but the odds are low on Paul having it, since it's a woman's disease by 4 to 1. The trouble with SLE is it's a mimic disease and can often be mistaken for lots of other things and thus go undiagnosed. The rash is quite distinctive though, so I should think Paul could diagnose it through that and looking through a typical symptom list. It has anaemia as a feature too, so definitely worth looking into, I should say, as long as you don't end up as a hypochondriac, imagining you have every disease under the sun!

Hillwoman profile image
Hillwoman in reply to Chancery

There is always that risk! I was also told that early stage symptoms of SLE can resemble other illnesses, and we can also see the similarities in symptoms and signs of hypothyroidism and PA. It just occurred to me because a lot of my relatives have auto-immune illness, including the UV reactive conditions.

Chancery profile image
Chancery in reply to Hillwoman

Oh dear, you poor things. Your family really has not hit it lucky with the gene pool. Maybe when you 'mate' you should insist all your potential partners are tested for heritable autoimmune diseases!

Hillwoman profile image
Hillwoman in reply to Chancery

Bless you, but that ship has sailed. :) Actually, concern about what I might pass on was one of the reasons I decided against having a family.

Secondchance profile image
Secondchance

I was low end of normal range for folate and had enough trouble getting my GP to prescribe any B12 injections for deficient reading and classical symptoms that I didn't even consider asking them about folate supplementation. I started using a basic B complex multivitamin daily when I started B12 injections but after reading up on it and the good advice here I changed to solgar B 50 complex and solgar methylfolate 800mcg supplements. If you read BCSH guidelines they mention using lower doses than 5mg to correct folate deficiency. Mine was >20 when last checked. I now only take those supplements on the day or 2 around my B12 injections which are currently fortnightly and I feel very well, better than I have ever felt.

Chancery profile image
Chancery in reply to Secondchance

Hi Secondchance, yeah, I've ended up buying a simple multi-vitamin which has 200ug of folic acid and taking it twice a day for a few months. I'm hopeful that will cover all the bases - that and eating a lot of sprouts, of course!

in reply to Chancery

Multi vitamin OTC is good as you are not risking any inbalances of to much of one and not enough of the other.

Chancery profile image
Chancery in reply to

I hope so, Marre. I'm working on the general principle that OTC is never strong as it is made cheaply (69p from Lidl's - for anyone who's interested!) so it's not going to do a job on my metabolism by throwing my vitamin profile through the roof. Incidentally, far too early to say, as it is only the second day, but I appear to have had a spectacular result from taking it. I'm not saying anything more as it could be, and probably is, a fluke, but at least I'm thrilled for today. I don't get health thrills that often, so woohoo!

in reply to Chancery

Yeah! Goodie, a good day is a good day, worth celebrating!

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