Newbie: Hi I have symptoms of memory... - Pernicious Anaemi...

Pernicious Anaemia Society

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Lvo77 profile image
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Hi I have symptoms of memory loss, tiredness, pins and needles, constipation, tingling around mouth, weakness, feeling sick.

I have thyroid peroxidase antibodies of 703.5 (<34) thyroglobulin antibodies of 575.3 (<115)

B12 92 (180 - 900)

Folate 1.5 (4.6 - 18.7)

Thankyou

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Lvo77 profile image
Lvo77
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5 Replies
JanD236 profile image
JanD236

You are deficient in vitamin B12 and folate. What has your doctor suggested?

You may also have thyroid issues, presumably with an auto immune cause. Are these being dealt with?

Lvo77 profile image
Lvo77 in reply to JanD236

Thankyou doctor has not suggested anything yet and thyroid issues not being dealt with yet either

clivealive profile image
clivealiveForum Support

Hi Lvo77 Are you in the U.K?

If you are in the U.K. you are both Folate and Vitamin B12 deficient and should be treated in accordance with the N.I.C.E. Guidelines. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

I cannot comment on your thyroid problems other than to say that they may put you at risk of developing a B12 deficiency and I suggest you post your questions about your "thyroid peroxidase antibodies of 703.5 (<34) thyroglobulin antibodies of 575.3 (<115)" within the Thyroid U.K. Community.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well.

Lvo77 profile image
Lvo77 in reply to clivealive

Thankyou yes I am in UK

Foggyme profile image
FoggymeAdministrator

Hi Lvo77. Has your GP seen these results?

You have a severe B12 and folate deficiency and should be treated immediately, for both.

There are two treatment regimes for B12 deficiency in the UK:

1) when no neurolgical symptoms are present - 6 x 1mg Hydroxocobalamin every other day and then and injection every six months.

2) when neurological symptoms are present - 6 x 1mg hydroxocobalamin every other day and then continue with injections every other day until no further improvement (for some, this takes many months). This is called the neurolgical regime.

You have neurolgical symptoms so you should receive the second regime of treatment. Many GP's are bit aware of the neurolgical treatment regime - your GP can look it up in something called the BNF - they will have a copy (your GP may have to read further than usual - neurolgical regime is about the third paragraph down). Here's a link to the BNF:

bnf.nice.org.uk/drug/hydrox... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Suggest you print this and take it in with you...just in case...

Be aware that some GP's think that this only applies to those with pernicious anaemia. However, the treatment for PA is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same (whether PA is the cause, or not). And you most certainly have B12 deficiency.

The usual treatment for folate deficiency is 5mg folic acid daily, for three to four months, followed by a re-test and dose adjustment (5mg is a large dose and few people need this much once the original deficiency has been addressed).

It's important to note that B12 injections should be started 24-48 hours before the first dose of folic acid. There have been rare cases where neurolgical damage has been caused through not raising B12 levels before folic acid is commenced.

Your GP should want to investigate the cause of your B12 deficiency (pernicious anaemia is only one cause).

Ask to be tested for IF antibodies - though 40%-60% of those with PA test negative, so a negative result does not rule out PA.

Also worth asking for ferritin (a marker of iron deficiency anaemia) and vitamin D levels to be checked. Those with B12 decency often have other absorption problems and deficiencies in iron or vitamin D can make you feel very ill, so need addressing, if present.

Because you have neurolgical symptoms, it's important that treatment commences immediately to prevent the potential for irreversible neurological damage, so I suggest you make an urgent appointment with your GP and ask for B12 injections to begin immediately. These are usually given by a surgery nurse but if no appointments are available there is no reason why your GP can't give you your first injection right there and then (mine did).

Your thyroid results show that you have something called Hashimoto's thyroiditis, an autoimmune condition that results in an under active thyroid. You should be treated for this.

Hope your GP also tested TSH, FT3 and FT4 (needed to assess true thyroid status). Not many GP's test FT3 and FT4 and those in the thyroid forum here on HU say that it’s essential to know these so that appropriate dosage of thyroid hormone can be prescribed. The best place to get advice about this is the thyroid forum and if you get all your thyroid results and post them on that forum, they will be able to give better advice than we can here.

Here's a link to that forum:

healthunlocked.com/thyroiduk

Unfortunately, it has to be said that many GP's are not well informed about B12 deficiency and often fail to provide appropriate treatment. I sincerely hope that you GP is not one of those 😉.

The main thing is that you should begin B12 injections immediately, and folic acid supplement 24-48 hours later.

If you have trouble accessing treatment from your GP, post again and we can give suggestions on how to deal with this and also provide links to current treatment guidelines that you can share with your GP.

In the meantime, there is more information about PA, B12 deficiency, and treatment regimens in the pinned posts to the right of this page (or at the bottom, if using a phone). Well worth a read.

Finally, I cannot only image that you must feel very ill indeed. Really hope that you GP takes swift action on this.

Very best of luck, lets us know how you get on, and post again if you need further advice or support.

👍

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