B12 deficiency

[Meerkat1234]

I have every symptom of B12 deficiency. Dr didn’t want to give me any. Agreed to one then a blood test. I have had neurological symptoms for three years and can’t eat protein. I can’t walk or stand and am scared I will be in a wheelchair for ever. Dr said my B12 was normal but it is almost out of range. What do I do.

[SeasideSusie Remembering]

You had lots of helpful replies to your post a couple of weeks ago here:

healthunlocked.com/thyroidu...

You could post on the Pernicious Anaemia forum here on HealthUnlocked, I'm sure they have come across this sort of thing before and may be able to offer some advice:

healthunlocked.com/pasoc

[SlowDragon Administrator]

If a different GP won’t prescribe B12 injections

You will need to self supplement

B12 drops 

Suggest you initially only take one drop

After 2-3 days….increase to 2 drops etc

Slowly increasing to full dose

natureprovides.com/products...

after 2-3 weeks on full daily dose …..add vitamin B complex

Perhaps initially try Igennus tablets…..as you can cut into 1/4’s to add slowly

Once you get up to a whole tablet daily…..then look at changing to Thorne B complex

[Meerkat1234 in reply to SlowDragon]

Lots of people are injecting themselves SlowDragon. As you responded to me first on this forum do you not recommend this.

[SlowDragon Administrator in reply to Meerkat1234]

well personally not tried it

I would experiment with B12 drops first….cheaper and easier

[Meerkat1234 in reply to SlowDragon]

I will try them. I have also now got vitiligo on my arms and face which I read you dealt with. I have gone up to 50 mcg today.

[Meerkat1234 in reply to SlowDragon]

what strength b12 do I get.

[SlowDragon Administrator in reply to Meerkat1234]

Suggest This one

natureprovides.com/products...

Full dose is 13 drops

Start with just one …..see how that is

Increase slowly up

[RedApple Administrator]

Meerkat1234, what do you mean by 'can’t eat protein'?

Without sufficient protein in your diet, you risk muscle atrophy at the very least I would think. No amount of B12 supplemenation will make up for that.

[Meerkat1234 in reply to RedApple]

If I eat protein of any kind I can’t digest it and it makes me number and in agony for days.

[RedApple Administrator in reply to Meerkat1234]

You are very much focussing on your B12, but what about your thyroid? Insufficient thyroid hormones will cause digestive problems. Are you on levothyroxine? If yes, what dose?

[Meerkat1234 in reply to RedApple]

I have gone up to 50 mcg of levothyroxine today.

[RedApple Administrator in reply to Meerkat1234]

Ah, so your dose of thyroid medication is probably much too low and that's causing you to be unable to digest food properly. You definitely need to focus on getting your thyroid levels sorted, as this is likely to also be the cause of so many of your symptoms that you are attributing to B12 deficiency. See here thyroiduk.org/if-you-are-un...

[Meerkat1234 in reply to RedApple]

Thank you for that information. What dosage do I need to get to so I can digest my food. Was I wrong to ask the doctor for a B12 injection as he didn’t want to give it to me. I am virtually bedbound and just like everybody else want to feel better. I was feeling unwell for years not knowing why.

[RedApple Administrator in reply to Meerkat1234]

I can't say what dose you need to get to because we are all different. The chances are you will need at least 75mcg, possibly more. It takes time to get to the right dose.

No you weren't wrong to ask for the B12 injection, but it's very likely that lack of thyroid hormone is what is really causing you to be so incapacitated.

How long have you been on 25mcg levothyroxine? And do you know what your thyroid blood test numbers were when you were diagnosed?

[SlowDragon Administrator in reply to RedApple]

RedApple

If you read all Meerkat1234 previous posts …..she knows she’s extremely under medicated for thyroid and is having to increase extremely slowly having been left on 25mcg for months/years and become extremely unwell

Dealing with an extremely ignorant GP who refused point blank to increase dose

Now slowly making progress at long last 😀

[Meerkat1234]

I have been on Levothyroxine 25mcg for about a year,went up to 37.5 eight weeks ago and have gone up to 50 mcg today.

On31st January my Free T3 level was 4.3 pmol/L

3rd April my Free T4 level was 11.9 pmol/L

3rd April TSHllevel was 0.79 multi/L

Thank you for the link.

[SlowDragon Administrator]

What dosage do I need to get to so I can digest my food

This should slowly improve as your vitamin levels and thyroid levels improve

Low stomach acid is extremely common hypothyroid symptom. We need high stomach acid to digest protein, red meat especially

50mcg is only the standard STARTER dose levothyroxine

Unless extremely petite likely to eventually be on at least 100mcg per day

Guidelines is that most people will eventually be on full replacement dose of approx 1.6mcg Levo per kilo of your weight per day

But having been so badly managed, you’re having to take increases in dose of levothyroxine very slowly

Bloods should be retested 6-8 weeks after being on 50mcg every day

Then highly likely ready to go up to 67.5mcg daily

Wait 6-8 weeks….retest …increase Levo etc

[Meerkat1234 in reply to SlowDragon]

Thanks SlowDragon. My doctors have really let me down. When this all started I asked to see an endocrinologist to be told that would only put the medication up so I thought that was a bad thing. I feel really angry about their mismanagement. Should I see a endocrinologist.

[SlowDragon Administrator in reply to Meerkat1234]

as soon as we start on levothyroxine, this will reduce TSH, so almost everyone, on replacement thyroid hormones will eventually be on full replacement dose

Taking any dose of levothyroxine will lower TSH, reducing your own thyroid output of hormones significantly or totally

So dose levothyroxine should be increased up, as fast as tolerated.

Levothyroxine doesn’t “top up” your own thyroid…..it replaces it

This is something many many medics still fail to understand, despite clear guidelines

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

cks.nice.org.uk/topics/hypo...

And here

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

So having been been left on ludicrously low dose of 25mcg levothyroxine far too long, your metabolism ground to a halt and very low stomach acid as a direct result.

Low stomach acid results in poor nutrient absorption and low vitamin levels and inability to digest protein

It’s then a very slow process to increase dose levothyroxine up, improve vitamin levels and for the rest of your endocrine system to also recover…..especially adrenal levels

Sadly your experience is far from unique

We see steady stream of U.K. thyroid patients left grossly under medicated, months, years or even decades ……including myself 25 years ago…..left on just 75mcg for 5 years…..by then in a wheelchair/bed bound. Only with help of this forum did I make full recovery

[Meerkat1234 in reply to SlowDragon]

Thank you so much for explaining all this to me and for sharing where you were. It is very kind of you and gives me such hope. I really appreciate the time that you have taken with me since I joined the forum. You are the one I knew first and who I feel comfortable with.

Thank you once again and at last I am taking 50mcg. Take care of yourself.

[Meerkat1234 in reply to SlowDragon]

Is it 3000 mcg B12 drops I need.

[SlowDragon Administrator in reply to Meerkat1234]

yes on that link I gave you

[Meerkat1234 in reply to SlowDragon]

Thank you SlowDragon.

[Bertwills]

if you’re having difficulty digesting food some digestive enzyme supplements could be very helpful. I have found them so. They also help release nutrients from you food

. There are many on Amazon or at Holland & Barrett. I take Time Health ones.

Dried papaya or pineapple fruit also helps break down protein. You can buy supplements of these too.

Good luck I hope things improve for you soon.

[Meerkat1234 in reply to Bertwills]

Hello Bertwills. Thank you for replying and the helpful things you suggested. I tried Betaine hcl to digest my food but they made me feel very sick. Take care.

[Bertwills in reply to Meerkat1234]

I didn’t get on with Betaine either, too acidic for me. The enzymes are different. There are specific ones for different food groups. Protein, gluten dairy etc. Worth reading around the subject or read some reviews on Amazon. Many people find them helpful & I’ve never had any side effects.

[Meerkat1234 in reply to Bertwills]

I found betaine very acidic too.where do you get your enzymes from. I am gluten and dairy and soy free.

[Bertwills]

Amazon or directly from Time Health by post.

[Meerkat1234 in reply to Bertwills]

Thank you very much.