Folate issues ....: Hello lovely people, I... - Thyroid UK

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Folate issues ....

Emjaytee profile image
25 Replies

Hello lovely people,

I purchased a good quality methyl folate after starting B12 injections because I read that many people are low in it if they have thyroid problems, but have found that within two days of taking it, I get all my joint and muscle aches and pains back ..... it took me a while to realise it was the folate causing this because I've started and stopped several times just to isolate the cause. I was just wondering if anyone would know why folate does this to me.

Any insight would be much appreciated.

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Emjaytee
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25 Replies
PinkNinja profile image
PinkNinja

If you are on injections, methyl folate may not be the right one for you. You may actually be better with folic acid. I remember reading somewhere that if you are taking methyl B12 you should take methyl folate but if you are taking cyano- or hydroxycobalamin (B12 injections) folic acid is better. Taking the wrong kind for you may cause a build up of homocysteine which could account for your symptoms.

Also some people just do not get on with the methyl form of B vitamins just like some don't get on with the other forms.

Do you know that your folate was low? Sometimes we're getting plenty of folate in our diets but not enough B12. Just because we may be deficient in vitamin B12 doesn't automatically mean we are deficient in folate too (although the two often occur together).

If you know that your folate is below 12, try supplementing with folic acid instead of methyl folate and see if that helps. If you get the pain returning perhaps you just don't need that much folate/folic acid and a lower dose may be more suitable. Also check you aren't already getting folate/folic acid from other sources such as multivitamin preparations.

I hope that helps give you some ideas of where to start looking :)

Carolyn x

Emjaytee profile image
Emjaytee in reply toPinkNinja

Brilliant, thankyou so much for your reply Carolyn. I still become very easily confused and wasn't getting anywhere reading lots of different articles and you've just made it very easy to understand, that makes perfect sense, will see how I get on with folic acid :)

PinkNinja profile image
PinkNinja in reply toEmjaytee

You're welcome. It's quite a complicated subject and I'm still learning myself. There are some more knowledgeable members than myself who are also members of the pernicious anaemia society so that is another place you can go if nobody here can answer a B12 related question.

Let us know how you get on :)

Coastwalker profile image
Coastwalker in reply toEmjaytee

Hi Emjaytee, I replied (PM'ed) back to you again wondering if you saw it :)

Emjaytee profile image
Emjaytee in reply toCoastwalker

Thanks for letting me know Coastwalker :-) My battery is about to run out so shall check when I get home.

fornels1 profile image
fornels1 in reply toPinkNinja

Not to be argumentative here. But I thought that both are forms of Vitamin 9 and theoretically they help to regulate homocysteine. Methyl folate is supposed to be easier to process than folic acid.

She may want to check if the folate she got contains something else that is triggering those joint pains. A low level of potassium is more associated with that symptom.

PinkNinja profile image
PinkNinja in reply tofornels1

I agree that most people get on best with methyl folate but a minority don't. Methyl folate is usually the best option but not always. I take methyl folate.

As for the pain, you may be right and it is certainly worth looking into. as well as the low potassium, low magnesium would be another possible cause.

I didn't consider you argumentative at all. Your comments were very helpful :)

fornels1 profile image
fornels1 in reply toPinkNinja

Thanks Carolyn I did not know that low levels of magnesium would have that effect.

PinkNinja profile image
PinkNinja in reply tofornels1

This is rather a simplistic view on my part but magnesium and calcium work together in balance a little like sodium and potassium. Where sodium and calcium are responsible for sending signals for muscles to contract (including the heart) potassium and magnesium have almost the opposite role, relaxing and recovering the muscle. As I said, this is a very simplistic view. I don't pretend to understand all the ins and outs.

Many times, people have plenty of calcium but not enough magnesium (a bit like with sodium and potassium). This can cause physical tension in the body, muscles cramps and pain, headaches, insomnia etc. Restoring that balance with a magnesium supplement can significantly reduce those symptoms. It is not, however, something to be gung-ho about. Magnesium should be supplemented carefully after some personal research or under supervision of a medical professional if you have a heart condition or other serious health problem.

I find it rather interesting that it is usually potassium and magnesium that are usually deficient rather than sodium and calcium.

PinkNinja profile image
PinkNinja in reply toPinkNinja

Vitamin D deficiency is another potential cause of joint and muscle pain. When supplementing with vitamin D3, it is very important to also ensure an adequate intake of magnesium. Careful supplementation of magnesium may be required. I always take magnesium with my vitamin D :)

fornels1 profile image
fornels1 in reply toPinkNinja

Now that you mention this I wonder if my Dad was low in magnesium since he experienced muscle stiffness. I was blaming it on hypokalemia since he is taking spironolactone, which is supposed to be a potassium sparing water pill. Needless to say that his MD advice was not very consistent. That is how I got into researching PH and cirrhosis.

PinkNinja profile image
PinkNinja in reply tofornels1

It could be. I just looked up spironolactone and, as well as being potassium sparing, it is also magnesium sparing. so, as well as helping with his potassium, it may have helped his magnesium level. Perhaps it was a combination of both potassium and magnesium deficiency that was causing the problem.

Incidentally, the serum magnesium blood test is pretty much pointless as only about 1% of the body's magnesium is found in the serum. As a result, hypomagnesia can be easily missed. An RBC magnesium test is much more reliable.

PinkNinja profile image
PinkNinja in reply toPinkNinja

It seems that even if it is magnesium sparing, it does tend to cause a drop in magnesium levels. This should be monitored with an RBC magnesium test.

Emjaytee profile image
Emjaytee in reply tofornels1

Thank you both very much for your input. I am taking good quality supplements, all the main ones mentioned on this forum, though only recently started magnesium, which smells disgusting and makes me retch!

Interestingly, I am also on spironolactone for hypertension but have been trying to cut down on it as I become generally healthier.

The strange thing for me is, after starting the recommended supplements and B12 injections, the painful joints pretty much disappeared, it's only when I start taking methyl folate again that they come back very quickly and with all the intensity as before.

My muscle fatigue and muscle seizures upon exercise such as walking up just a slight incline, has not yet recovered but am hoping to resolve that with some amino acid supplements I ordered yesterday.

I just wondered if there was some sort of

commonly known link between methyl folate and joint pain issues for people with certain health conditions, which would help me figure out the root cause of my health problems. I believe all the other (or specific ones) supplements I'm taking have "cured" the joint pains, but then methyl folate seems to eradicate the improvements immediately. Maybe I have too much folate already. I have given up on my GP's so don't have any idea what my blood levels currently are.

PinkNinja profile image
PinkNinja in reply toEmjaytee

I don't know about any link with folate and pain but it is entirely possible. Sometimes the dose is just too high. Often people have low B12 but this is masked by the fact they have good levels of folate. Maybe this is what is happening here? Perhaps you are getting enough folate for your needs in your diet. If you can get a test (stop supplements for a while before) that would help clear things up.

The PAS community might be the place to ask about B12 and folate issues. They have some experts in this area. It may even be that you are missing something else that is preventing a good methylation process or it could be low potassium or magnesium. It's a good idea to test before supplementing and as you are on spironolactone, it is quite reasonable to ask for these tests (along with sodium and potassium).

You may find the magnesium helps but you really could do with testing vitamin D too as deficiency can cause pain among other things.

Emjaytee profile image
Emjaytee in reply toPinkNinja

I see, that is probably what's going on then. I shall ask the doctor for tests but won't hold my breath, as I'm just not very good at being assertive with those in "authority".

I've been taking a good quality D3 for a few years now so I imagine my levels should be ok, though I do quite quickly notice depression creeping in when I run out, so shall continue that particular supplement for years to come.

For now, I am going to do the magnesium and see what happens. I'll wait a month or two to start the amino acids as I won't know which of them is helping, if I see an improvement. Fingers crossed.

I don't know how magnesium managed to fly under my radar. I've been doing nothing BUT read up on various supplements and reviews and health articles for the last few months.

fornels1 profile image
fornels1 in reply toEmjaytee

Anytime! it is a learning experience as we discuss these things.

PinkNinja profile image
PinkNinja in reply tofornels1

Our later replies seem to have temporarily disappeared.

I've just found out that Spironolactone can cause magnesium levels to drop. This is something worth keeping an eye on.

Emjaytee profile image
Emjaytee in reply toPinkNinja

I can see your replies Carolyn! I have only just started taking magnesium, I shall continue for a month and then try methyl folate again.

Emjaytee profile image
Emjaytee in reply toPinkNinja

Wow, just reading up on magnesium, didn't realise how important it was and certainly may explain my heart problems and severe muscle fatigue!

PinkNinja profile image
PinkNinja in reply toEmjaytee

Yes. It is very important but it's important to get the right sort and build up slowly in case you have calcium issues. Most people have plenty of calcium, especially if you eat well and live in a hard water area.

Emjaytee profile image
Emjaytee in reply toPinkNinja

I'm not taking calcium because I read that somewhere and I do eat as healthily as possible. I bought calcium citrate, I've only had it for about a week but after having just read up on the recommended dosage, think I should double the amount I'm taking. Thank you very much for sharing your knowledge :)

PinkNinja profile image
PinkNinja in reply toEmjaytee

I take it you mean 'magnesium citrate' :)

That's what I take too. Seems to suit me quite well :)

Emjaytee profile image
Emjaytee in reply toPinkNinja

Ooops, yes that's what I meant :)

fornels1 profile image
fornels1 in reply toPinkNinja

Carolyn:

If that is the case then it makes sense that my Dad was having stiffness in his joints. I even started to doubt whether spironolactone was truly a potassium sparing. Besides that is known to cause gynecomastia and replace testosterone with estrogen. This fact makes me wonder about its effect on the bilirubin values. His were slightly off range.

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