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Pernicious Anaemia Society

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Ref my first post

holehead profile image
6 Replies

Hi

Thanks for your comments I have enclosed the details

Serum B12 149 ref 150-1000ng/l

Serum folate 4.5 ref 2-18.8 ug/l

Serum ferritin 12 ref 12-250ug/l

RDW 14.7% ref 12-15%

RBCount 4.6 ref 4.5-6.5

Haemoglobin 142 ref 130-180g/l

Serum TSH 2.1mlU/L ref 0.3- 4.5

All on a downward trend other than RDW which is upward

Many thanks Mark

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holehead
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Foggyme profile image
FoggymeAdministrator

Hi Holehead

Copy and paste of my comments from previous thread (which are new, so you may not have seen them)...and so others can see what has already been said 😀😀...as follows....

The serum B12 result indicates that have B12 deficiency, which your GP should now be treating with B12 injections.

Your folate is also very low. B12 and folate work together so you need good folate levels so your body can utilise B12 properly. Folate levels should be in top third of the range.

It is important that your GP does not give you folate supplements unless your B12 deficiency is treated (folate should commence 24 hours after your first B12 injection). If your GP treats the low folate without treating your B12 deficiency, you will be exposed to the potential for irreversible neurological damage. Some GP's don't know this.

Your serum ferritin is very low and this can make you feel very ill indeed (breathless, weak, tired, difficulty swallowing etc.). Some of these symptoms are also the symptoms of B12 deficiency, so you could be getting a 'double whammy' of symptoms.

Although the RBC and Haemaglobin are within the reference range, the downward trend, together with the increase in RDW (which indicates that your red blood cells are getting larger - indicative of macrocytic anaemia).

Macrocytic anaemia can be present in pernicious anaemia and in view of your proven B12 deficiency, your GP should test anti-IF antibodies to see if you have this condition (note - the test is only 50% accurate so you can still have PA, even if you test negative).

TSH - think this is slightly high, though your GP will say it is normal. But not very knowledgable about this. Try posting your result on the thyroid forum - very knowledgable folks there will be able to a advise on that (and they'll probably tell you to get FT4, FT3 and thyroid antibodies tested too).

So...back to the B12 deficiency. If you have neurological symptoms, it is important that you are treated with B12 injections immediately, in order to prevent potentially irreversible neurological damage. And you should have the neurological regime, in order to prevent potentially irreversible neurological damage. Your GP may not know this.

If you do have neuro symptoms, you should get 6 X loading doses of Hydroxocobalamin on alternate days, then 1mg Hydroxocobalamin every other day until no further improvement, the 1mg Hydroxocobalamin every eight weeks. Your GP may not know this.

If you don't have neuro symptoms, you should have 6 X loading doses on alternate days, then an injection every three months.

If you have a read of the PAS pinned posts to the right of this page when you log on, they give lots of information about diagnostic testing for PA, the treatment of B12 deficiency, guidelines that GP's should follow, and a checklist (you'll be able to identify neurological symptoms - and you might even find that you have symptoms that you didn't know we're symptoms).

If your GP is reluctant to treat your B12 deficiency, Print and highlight anything that is relevant to your case and take it along to show your GP. Unfortunately, many GP's are very ill-informed about B12 deficiency and PA so don't be surprised if you end up having a battle on your hands when trying to get treatment.

If you have trouble getting treatment or you are not sure if your GP is providing the correct treatment, then please put up a new post and people can help and offer advice about this.

Certainly, your B12 deficiency, low folate and low ferritin should be addressed by your GP.

Good luck with your GP...please let us know how you get and and, as I said, lots of people here to help, if needed.

Take care 😀

Foggyme profile image
FoggymeAdministrator

Hi Holehead. Just to let you know....I've edited my reply above and removed the reference to surgery...realise that you're not having this.

My bad...foggy head 😖 so sorry for that.

Sense now prevails 😀👍

holehead profile image
holehead in reply to Foggyme

Many thanks know the feeling😨

Foggyme profile image
FoggymeAdministrator in reply to holehead

Phew...thank you Holehead 😀

Really hope you get some treatment soon...please let us know if you need any further help...

Take care 👍

holehead profile image
holehead in reply to Foggyme

Hi

Back again,been to see the doctors again and re emphasised my symptoms and blood tests but very disinterested just upped my anti depressants saying the fatigue is due to depression. resigned to the fact I will have to live with my symptoms

Foggyme profile image
FoggymeAdministrator in reply to holehead

Holehead...this is just dreadful.

Your GP seems totally incapable of seeing the evidence In front of his eyes - proven B12 deficiency, folate and ferritin that are far to low and raising red cell distribution width (RDW) - indicative of macrocytic anaemia, B12 and folate deficency. Your ferritin is so low that it will be making you very ill indeed.

You need B12 injections, folate and ferritin supplements.

If these issues are not addressed you will become increasing I'll and there is potential for potentially irreversible neurological damage if you are not treated for your B12 and folate defieiceny. (Please don't be tempted to take folate tablets unless you are treated with B12 injections as this can cause neurological damage).

In view of your blood results I'd say that there is virtually no chance of increased anti-depressants being the answer to your poor health. (Even if you do have depressions and anxiety, your GP seems completely unaware that these can be symptoms of B12 Deficieny).

You should not have to put up with these symptoms. I cannot imagine what your GP thinks he's doing.

Did you take along evidence from this site to show him (guidelines, treatment protocols etc.)

Your could put your concerns in writing, including the evidence, and ask him to write to you with an explanation as to why he is refusing to treat your proven B12 deficieny - and ask him to include medical evidence to support his decision. He won't be able to - there isn't any.

Or escalate this to the Clinical Director for your health area (you can find this on the Internet) or to NHS England. The problem is, all is take time and you really need treating quickly if you are to return to full health.

I think I would seriously consider moving surgeries (and hence your GP) quickly - your current GP is doing you no good whatsoever and may well be doing you a great deal of harm.

Can I stress again - you should not have to live with these symptoms.

Some here decide to self inject B12 when they are left with no option and all GP routes have been exhausted. If this is something you decide to consider, then are plenty of folks here who can advise and help with this.

Please don't give up - I know it's very difficult to keep pushing for treatment when you feel so very ill - but it's your body, your health, and you deserve to be offered the best treatment to make and keep you well.

Please do change your GP - and let us know how you get on x

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