Folate deficiency: After giving up on my Edo... - Thyroid UK

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Folate deficiency

scottishkitty profile image
9 Replies

After giving up on my Edo eventually have went back to my doctor as I have been feeling rubbish for what feels like years now. My blood tests has come back indicating that my tsh is at a great level but my folate level is through the floor. My doc has given me a months dose of folic acid and seems to think this will sort me out. I have to see her in 3 months and she has said if its still a problem then I might just need extra folic acid for the rest of my life.

I've a bit of. Problem with that..... surely she should be trying to find out what is causing the folate deficiency???? This is the second time that this has shown up low on my blood tests alongside my MCV being marked as over range in every full blood test I have had!!!

Why do doctors always seem to want to just treat the symptoms and not find out the cause.

I am sick and tired (literally!!) Of feeling like this. I have huge dark circles under my eyes as I always have a nightmare sleeping, my fingers are constantly numb and swollen, my body aches, I always get hot feet and irritated legs about 10.30 pm EVERY night, I constantly feel tired, and according to her this is all because I need a months dose of folic acid!!

Grrrrrrrrr

Anyway rant over...

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9 Replies
Orangelady1 profile image
Orangelady1

Hi, wow, I have been given 2 months supply of folic acid also, I went with all the same problems as you. My doc neither told me why, just that it came back low on my blood work???? I am starting to think that doctors will just say anything to people with thyroid issues because they have no clue themselves! I do hope you soon are feeling better, and I suppose we will just keep taking the folic acid and hope for the best. X

helvella profile image
helvellaAdministrator in reply toOrangelady1

See my reply to scottishkitty below. It might be relevant. :-)

helvella profile image
helvellaAdministrator

That is worrying.

You seem aware that high MCV is an issue. You realise that is often an indicator of low vitamin B12?

If you take folic acid without treating for low B12, your MCV will return towards "normal", your folates level will increase, but the damage due to low B12 will continue regardless. Simply, the high MCV will be masked by the folic acid.

You simply MUST do something about B12.

You have one big choice - do you get tested, by NHS or privately, before treating?

If you get tested, I am pretty confident you will find low B12. And it is a good thing to have that on your record. But if your doctor is being uncooperative and you can not afford a private test, you might feel you have to start taking B12.

If you treat "blind" (without a test), you might find it difficult to get a doctor to take you seriously in future because further tests will reflect any supplements you have been taking. Further, you might be so low that you should get injections of B12 and taking ordinary over-the-counter supplements will simply not be enough. I encourage you to get tested if you possibly can.

Private test information here:

thyroiduk.org.uk/tuk/testin...

Blue Horizon's home blood testing arm allows you to do a finger-prick blood test from home. Blue Horizon do the new Active B12 test which is widely regarded as a much better test than the standard serum B12 test.

Treatment depends on test results. Could be injections, or B12 supplements which are available in a wide range of forms (patches, tablets, sprays, etc.). Typically doses from 1000 to 5000 micrograms.

Do not take this as a diagnosis - I am pointing you in one direction to try to make sure that the possibility does not get missed which seems a strong danger from your story.

It is widely known that pregnant women are regularly told to take folic acid. It is possibly less well known that there was a lot of discussion within medicine about the possibility of that masking B12 deficiencies. On balance, they decided the modest folic acid dose used probably wouldn't completely mask the B12 issues. And, anyway, the benefits were all too positive. Maybe they were right, but the idea that your doctor appears unaware is the bit that really is concerning.

Rod

poing profile image
poing in reply tohelvella

Rod, I think the B12 and folate tests are usually run as a pair in the NHS, and there's a good chance that B12 was already tested here...

maybe the B12 was in range, unfortunately most doctors don't seem to think that being low in the range is signficant.

Scottishkitty, you could phone your GP and find out if there is a result for B12.

Moggie profile image
Moggie

Unfortunately unless you ask them WHY and keep asking then until they give you an answer that makes sense or that you can then research with a view of making sure their answer tallies with what you have research then you will always be kept in the dark.

I had this with my heart palps - both my GP and endo mentioned beta blockers and warfarin on several occasions but I told them both (in no uncertain terms) that they were just trying to put a sticking plaster over the problem and I wanted to get to the bottom of the problem and not mask it. The results, four months down the line, is no heart palps and more importantly no beta blockers and no warfarin.

You need to get into the habit of asking why and if you don't understand then ask your GP to explain in more detail. He/she wont like it but you need to understand as much as you can so that you can check, and double check, what meds/treatment you are being given is correct.

Great answer from Rod by the way.

Moggie x

Just to back up the great advice you have been given, my serum B12 was around 300 (normal?!), folate off the bottom of the range. I was told I was normal but insisted on further testing which, fortunately for me, my Endo agreed to and was paid for by my medical insurance. I had an MMA test which was elevated indicating B12 deficiency. It would be brilliant if you could get Active B12, MMA and homocysteine tested, but start by asking your GP what your serum B12 was, this would definitely have been tested at the same time as your folate. It's not a good idea to take folate or any over the counter B12 supplements until you've got a proper diagnosis.

scottishkitty profile image
scottishkitty

hi guys thanks for all your comments. yes my b12 was tested and was fine. think it was 500 something. i asked my doctor for a print out of my results but she said that she didnt do that as it seems to cause more trouble with people reading more into results than there is and googling all sorts of conditions.

in reply toscottishkitty

Oh dear, GP on the defensive, I do feel for them sometimes, they must hate the internet! However, you are entitled to a copy of your medical records, she can't deny these to you (I think its under the freedom of information act)? I would politely ask for a copy of your lab results again. I would also say serum B12 is not a great indicator of your B12 status. It measures total B12 in the blood, some is active, some is inactive. Also, if you were taking any supplements with B12 in them at the time of the test your results will be skewed. It might be worth getting the Active B12 test done privately to put your mind at rest.

khank profile image
khank

Got to see doctors if you have been feeling this for a long time. Drink vitamins to help you with your health problems. Edited by Admin due to advertising

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