How to get help for hypothyroid B12 deficiency?

[Nanaedake]

I have a GP apt forthcoming and I want some advice about what to ask and what to say?

After about 7 years of being ill following hemithyroidectomy surgery, I had blood tests at GP that came back normal for vitamin B12 and a bit low but still in (NHS) normal range for folate.

I had a range of growing symptoms. Gasping for breath, breathless up hill, even small slope, tachycardia, constantly yawning in the afternoon, joint/muscle pain from head to toe, anxiety and unexplained acute pain and svere pain at one point in my jaw, an abscess, cognitive disfunction a numb hip, back pain, utter misery and inability to cope with work and life.

I saw several GP's, a cardiologist and 2 endocrinologists and nobody had any suggestions except to take nurofen or antidepressants or see a shrink. I saw on this forum about vitamin B12 so even though my blood tests came back normal I took methylcobalamin 500mcg along with a B multivitamin. I was cautious but began to feel a bit better. Then I took Methylfolate 400mcg for a couple of months and felt a bit better. A while ago I stopped the methylfolate and increased to 1000mcg of methylcobalmin and felt a lot better. Then I increased to 1500 mcg of methylcobalamin and I'm returning to the land of the lliving. When I ran out of B12 vitamin I felt terrible very quickly and my face kind of scrunched up so that people thought I looked sad and miserable and people I didn't even know commented on it.

How much methylcobalamin is too much? Is it the right form of vitamin B12 to be taking? What should I ask my GP? Do I need to keep buying pills and what if I run out? Is this a temporary problem and why didn't my blood test show any problem? I've got so many questions to ask, can anyone help me? I'm worried that I will not taken seriously as for so long I feel I've been treated as though I was a hypochondriac coming up with strange symptoms so what do I say to help me get the right help and treatment?

[Clutter]

Nanaedake,

As your serum B12 levels were within range and will be high in range after supplementing methylcobalamin you may not get much sympathy from your GP. 1,500mcg isn't a high dose and there isn't too high a dose of methylcobalamin to supplement as excess is excreted in urine.

You will get better advice about folate and B12 on healthunlocked.com/pasoc

If muscle and joint pain hasn't resolved your GP to test ferritin and vitamin D. Low/deficient levels are common in hypothyroid patients and you will benefit from correcting deficiencies.

[Nanaedake in reply to Clutter]

My joint/muscle pain is hugely improved and I got my D tested and it's in range, ferritin was ok. As far as I can tell it's the B12 that's made the difference.

[greygoose in reply to Nanaedake]

Do you have the actual numbers for the vit D and ferritin? Because 'in range' and 'ok' are meaningless. Unless your vit D is around 100, and your ferritin around 80, they are too low. Your B12 test probably did show a problem, you you didn't recognise it. B12 should be at least over 500.

[Nanaedake in reply to greygoose]

B12 was 619, Range 191 - 663. Folate 7.3 range 4.60 - 18.70.

Ferritin 53, range 13-148.

It seems like it's the B12 is making the difference so I can't understand what's going on.

[greygoose in reply to Nanaedake]

Well, your ferritin is too low. You do need to supplement that. How about the vit D?

[Nanaedake in reply to greygoose]

I got vitamin D tested and it was good. Mid range.

[Nanaedake in reply to greygoose]

I did try taking floradix but it upset my stomach.

[greygoose in reply to Nanaedake]

Did you try taking vit C with it? That protects the stomach.

[Nanaedake in reply to greygoose]

No, I haven't tried that. I take 1000 mcg of vit C in the morning but could swap it to the evening and take it with the iron.

[Nanaedake in reply to Nanaedake]

I can actually breathe since taking methylcobalamin and I'm not out of breath, waking up feeling like I'm suffocating or yawning all afternoon despite working in a hot room.

[greygoose in reply to Nanaedake]

I'm not saying you don't need B12, but you do need iron, too.

You don't give the range for the vit D, but mid-range is rarely the same as optimal. It needs to be around 100.

[Nanaedake in reply to greygoose]

I can't find the note but I think it was about 90

[greygoose in reply to Nanaedake]

OK, well it could be a bit higher. And it's probably lowered a bit, being winter.

[shaws in reply to Nanaedake]

It is now recommended the top of the range should be around 1,000. I know different levels in different areas but around 1,000 is the most recent.

[shaws in reply to Nanaedake]

I believe it is the B12 that has helped you and any excess we take is excreted, so there's no worry. Methylcobalamin is the right one.

I posted a link re B12 yestetrday and Marz a video today. The video is well-worth watching if we've to avoid dementia/alzeimers.

[Nanaedake in reply to shaws]

Have you any idea why my B12 results didn't show that I needed any? How long will I need to keep taking it?

[Jazzw in reply to Nanaedake]

According to the Pernicious Anaemia Society there are serious shortcomings with the current test used to determine B12 status in patients. The current test, the Combined Binding Luminescence Test gives false high results in between 22 and 35% of patients (depending on the manufacturer of the test machine).

In other words, people can be a lot more B12 deficient than a test result would suggest. And once you start supplementing B12, the results will look fine. I think you have to stop taking B12 for several months to know what your results might be without it! Not something that most people who find it helpful want to do...

As for how long you might need to take it, it depends on why you're deficient. If it's dietary and you can face eating lots of liver maybe that will work. You could have undiagnosed coeliac or gluten sensitivity. You could have pernicious anaemia (in which case you'll always need to supplement). It could be you're not on enough thyroid hormone and thus your stomach acid is too low for your gut to absorb nutrients - are you on thyroid hormones? If so, what were your most recent blood test results?

Edited to add - just found your post from 4 months ago where you gave thyroid blood results. They looked reasonably ok, so most likely not the reason unless something's changed.

[Nanaedake in reply to Jazzw]

What do I do about the unreliable blood test results? Should I ask my GP about it? It's making such a huge difference, if I stopped taking B12 I would not be able to work.

[Jazzw in reply to Nanaedake]

Does your GP know that? Would be worth explaining that. If you have pernicious anaemia the test can work even if you take B12. But - it doesn't always come back positive even when it should. One of those annoying tests - like the rest for coeliac disease which also doesn't always come back positive when it should...

You might do better with B12 jabs.

[Nanaedake in reply to shaws]

Where can I find the link?

[helvella in reply to Nanaedake]

Click on the blue name shaws to go to her profile. Look at list of posts. Click on relevant post.

[Nanaedake]

Yes, I take 125 mcg of Levothyroxine and my results were TSH 0.35 last test so ok. I've had terrible trouble with Levothyroxine wiith up and down results but last 6 months on Actavis have been better but I still had many symptoms just blood test results have been ok and not all over the place. I do wonder if I have some kind of absorption problem.

[Jazzw in reply to Nanaedake]

You might have. Some people with gluten sensitivity don't have any symptoms (I do - I suffer horribly if I get glutened ).

[Nanaedake in reply to Jazzw]

How do you find out if you have gluten sensitivity or not?

[Jazzw in reply to Nanaedake]

Well... It's best to ask your doctor to get tested first. There's a blood test that can be done that indicates whether you have or not. And there are endoscopy-based diagnoses as well.

If you just stop eating gluten, the tests won't detect a problem if there is one.

I didn't know that when I stopped eating gluten. But I get so ill now if I accidentally have any it's kind of a no brainer.

[pixychik]

I too have hypothyroid (hashimoto's) and have some of the same symptoms, severe fatigue, joint pain, burning sensation in arms and tops of feet. I tested positive for the C677T gene mutation for b12 however when I try to take methylated b12 in pill form and get sick, it's like any supplement I take to try to help myself builds up in my system and I get sick and have to stop taking it. I believe that is because I just found out a month ago I also have very low stomach acid (and I believe I've had this for a long time) and have been taking hcl with betaine pepsin for a month. My B12 labs a year ago showed it to be in the high normal range. So I believe I haven't been absorbing it thus causing some of my problems. I'm going to get a B12 MMA test done to see if that shows a deficiency.

Are there liquid forms of b12 that are easily absorbed and if so how much would I need to take daily? Would the liquid b12 bypass the stomach so that it would get absorbed? HELP!