How long does it take to improve - Pernicious Anaemi...

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How long does it take to improve

Millerk
Millerk
8 Replies

Hi I'm new. Never had blood test but suffering from Underactive thyroid. Depression and extreme tiredness and feeling very cold after exercising and so out of breath. Injecting 0.5ml of saline so 1mg of b12 when should I notice the difference?

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Hidden
Hidden

Is your thyroid optimally treated, what are your latest results with ranges, and why are you injecting b12 if you have no test results?

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Millerk
Millerk
in reply to Hidden

Hi

Because of all my symptoms. Yes thyroid is good, tsh is 1.5. I had brain for, terrible tiredness, pins and needles and very itchy burning soles of feet and white patches appearing on skin, go refused to test

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Foggyme
FoggymeAdministrator

Hi Millerk. Your GP is wrong not to test you for vitamin B12 defieiceny so first, I suggest you go back and and ask again. Or go to another GP in the practice, if you can.

Vitamin B12 deficency had many cross-over symptoms with other conditions, a prime candidate being thyroid disorders - and there are many others (low folate, low ferritin, vitamin B12 deficeny - along with a whole range of other potential medical conditions).

Your GP may say that your TSH looks okay but over on the thyroid forum here at HU, they would tell you that TSH alone does not give a true thyroid status. Have you had a full thyroid screen to TSH, FT3, FT4 and thyroid antibodies? I suggest that you post any blood results you have on the thyroid forum and ask advice there - they're very good at all things thyroid and will be able to advise. It may be that your thyroid condition is not being controlled properly - many of your symptoms could also (but not necessarily) be down to this.

I note in one of your replies below that you say you have neurological symptoms (the pins and needles). This should be investigated further by your GP, especially if he is convinced that your symptoms are not due to B12 deficency (though how he knows this without testing is beyond me). Ask your GP for a referral to a neurologist. This would not be an unreasonabl request from someone suffering neurological symptoms with an as yet unknown cause.

Whilst some of your symptoms do sound like the symptoms of B12 deficiency, it is impossible to know this until investigations have been undertaken and other causes for your symptoms ruled out.

There is a possibility that other things are going on and in self-treating an undiagnosed vitamin B12 without medical advice there is the possibility that other underlying conditions (perhaps in addition to B12 deficency) are being left undiagnosed and untreated.

If you do have vitamin B12 deficiency, one injection of vitamin B12 will not be sufficient to repair any damage and control your symptoms on a long term basis. And please can I add a note of caution: B12 injections can sometimes (but rearely) cause a severe allergic reaction (anaphylactic shock) which requires immediate medical attention. This has the potential to occur each time you introduce a different type of cobalamin (methylcobalamin, Hydroxocobalamin, cyanocobalamin) so it would be very unwise to try injecting a different cobalamin to the one already used unless under direct medical supervision and in a location where immediate medical assistance is available, if required.

So...where does that leave you...

First, I think it would be a good idea to read all the PAS pinned posts to the side of the page when you log on. They will give you lots of information about the diagnosis, treatment and guidelines relating to the treatment of vitamin B12 and/or folate deficiency. More importantly, they will give you the knowledge to approach your GP from an informed position and request the medical attention and investigation that your GP should have offered you. It's a good a idea to highlight anything that is relevant to your particular case and make sure your GP reads them while you are there in front of him/her. If you can take someone with you that would be a good idea. GP's are often more attentive and less hostile if a witness is present. Sad, but true.

Unfortunately, any test your GP could do for B12 deficiency will now be skewed as your levels will have raised to within what is referred to as the 'normal' range. However, this is only part of the story - and your GP may not know that.

As you read through the PAS pinned posts, you'll see information that tells about the unreliable nature of all the B12 tests, that where symptoms of deficiency are present, then treatment should begin immediately. Especially where neurological symptoms are present. This is the information to focus on to take to your GP. The golden rule - always - is to treat the symptoms, not the blood results. Your GP may not know that.

Here are some guidelines about the importance of commencing treatment, even if B12 levels are normal or high. Print these and show them to your GP:

archive.is/hbPHE

And here are the guidelines about the diagnosis and treatment of B12 and/or folate deficiency:

LINK: BSH Guidlines: Treatment B12 / Folate Deficiency

onlinelibrary.wiley.com/doi...

If your neurological symptoms are due to vitamin B12 deficency, your GP should put you on an intensive regime of B12 injections - loading doses x six, then every other day injections until no further improvement - again, your GP may not know that. It's in a book called the BNF (on his/her desk) and they can look it up - but will have to read further than usual - it's the second paragraph down.

Usually we would advise that your GP undertakes the following blood tests (as a minimum) FBC, serum B12, folate, anti-IF antibodies (test for PA), vitamin D, ferritin, potassium, magnesium. MMA (in particular) and homocysteine are often a better indicator of B12 and / or folate deficiency but are not always available on the NHS (and these would be skewed because of the B12 you have already taken).

It's worth noting here that folate deficiency has the same symptoms as B12 deficiency (folate and B12 also work together so if your folate is low, then your body cannot use B12 properly). However, if your folate is low your GP should not give folate supplements unless the B12 deficiency is also addressed as this can cause neurological damage. This may be problematic since your levels B12 levels will now be high and will mask any potential underlying B12 deficiency, if you have one. Perhaps your GP would like to err on the side of caution, assume you do have a B12 deficency - you have all the symptoms - and treat you with B12 and folate (if your folate is low).

When neurological symptoms are present it would be usual for a GP to test for diabetes.

Your GP might also like to check CPR and ESR (inflammatory markers): these will not diagnoses a specific inflammatory condition but if they are raised would indicate to your GP that further investigation is required.

One more thing to think about - if you have a family history of autoimmune conditions it is more likely that you could have one also (PA is an auto immune condition). If this is the case, your GP should run an antibody screen to determine if you have an underlying autoimmune condition (they tend to come in clusters, so you could have several simultaneously).

Finally - and this might be difficult 'cause GP's can often be unnecessarily hostile - it would be a good idea if you told your GP that you have injected vitamin B12. As your B12 levels may now be quite high (and could remain so for many months) your GP will need to know the reason for this and take it into account when assessing your blood test results. The high level of serum B12 tells you nothing about what is happening at the cell level (no test can do this either) and your GP should be made aware that B12 deficiency can be present even if B12 levels are within range or even way over the top of the range (information about that in the pinned posts).

About the self - injection: some here do turn to self-injecting but this is usually as a last resort after medical investigation and when other potential causes for their symptoms have been ruled out. Or when a greater frequency of injections are required and they are unable to access these via the NHS system. So I really would urge caution and advise you to re-visit this with your GP (though I do understand how difficult this might be).

I'm sorry that there aren't any easy answers to this and it sounds from what you say that you may have some trouble getting your GP to take your symptoms seriously and investigate and treat you properly. So you may have to be brave and very determined. All here will sympathise with that 'cause many have been down that tortuous route.

If you have any questions after reading the material flagged here or if you need further advice and support on how to deal with your GP, please post again. Lots of folks here will pop along to help you.

Take care and good luck. Let's us know how you get on 👍

P.s. GP's will often say blood results are 'normal' when they're not. If you want to get copies of all your blood results (you are entitled to have these) and post them on the forum, together with reference ranges, forum members will be able to help with interpretation. 👍

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Millerk

Thank you for your support. I injected out of desperation as falling asleep all the time and go said everyone gets tired. I'm taking 150mcg of levothyroxine. I have had very heavy periods all my life and take iron about once year for three months. They just said I'll be fine after the menopause. I have to work to pay bills I just started self treating after not knowing what to do. I have had more energy lately since injecting every other day. My pins and needles have been investigated no diabetes and nerve tests for carpet tunnel have come back negative. I'm so depressed to fight the doctors any more. I'll post previous test results. Thanks

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Hidden
Hidden

Very heavy periods... does yr gp refuse to test your serum ferritin regularly too? Are you currently anaemic? Sounds as though your low iron is also playing into your symptoms... what supplements are you taking?

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Millerk
Millerk
in reply to Hidden

Yes he just fobs me off with iron and after a couple of months I stop because I get so constipated. I eat a very varied diet including liver. And greens but I don't think I absorb properly. I take a high strength multi vitamin and fish oils and b vitamins.

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Hidden
Hidden
in reply to Millerk

I agree, there is malabsorbtion. Ferrous fumerate or iron bisglycinate should not constipate as much as ferrous sulphate.. we use Gentle Iron by Solgar, but cheaper iron is just as good.

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Millerk
Millerk
in reply to Hidden

Thanks xxx

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