Pernicious Anaemia Society

Struggling with doctors


I have been having the following symptoms for the last two weeks;

extreme fatigue

Numbness in toes and fingers- especially little fingers

Joint and back pain

Loss of balance and difficulty walking.

Generally weak


Tingling lips

Sensitivity to touch, cold, hot

Freezing cold hands and feet

White tongue

I have accessed several doctors, including a&e when my legs got really bad but most have been unhelpful. My GP has now done a b12 test and thyroid check and I should get results on Tuesday.

I am worried I am not getting any treatment yet and this is the fourth week of the symptoms. I can't go to work or look after my son alone.

Any help/ ideas would be appreciated. I feel concerned if the bloods aren't low then I still wont get and help.

8 Replies

Hi, it can be a scary wait but i think that would be the best thing to do, especially as you dont really know what is causing your symptoms at present.

Only thing you could possibly do is go to somewhere like holland and barretts and get some boost spray or b complex drops both of these are pretty quick response but short term effect. They might give you a bit of ummph while you wait on your test results.


Hi, try not to worry, as lisahelen says there can be many reasons for your symptoms so make sure you get the actual numbers for your tests and don't let them tell you normal. Once you have them you can tackle whether you need treatment and how to get it with help from people on this forum.

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There are other tests that can help to identify whether or not someone has b12 deficiency or has PA (pernicious anaemia). eg homocysteine, Active B12, MMA , IFA (Intrinsic Factor Antibody). The IFA test is not always reliable and a person can still have PA even if they test negative.

Taking B12 before B12 diagnostic tests may effect the results and in some cases can make it difficult to get a diagnosis. See links below.

Have you looked at B12 symptoms lists?


B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12" by Sally Pacholok and JJ. Stuart

When I realised I might be B12 deficient, I read as much as I could. My experience taught me that b12 deficiency is not always well understood by Gps and consultants. if you have time, you could read the pinned posts on this forum.

There are many possible causes of b12 deficiency

You mention you have a child. If you gave birth recently, did you have gas and air? Gas and air used for pain relief contains nitrous oxide which can cause problems for some people.

There is a UK document "BCSH Cobalamin and Folate Guidelines" which I found helpful to read.

Page 29 is a diagnosis flowchart which shows the recommended process a medic should follow with someone they suspect may have B12 deficiency. My experience is that some GPs/ consultants are unaware of this document.

I am not a medic just a person who has struggled to get a diagnosis.


I forgot to say that one of the things I learnt was to always get copies of my blood test results. Sometimes I was told everything was normal but when I got a copy of results , sometimes there were results that weren't normal.

As well as b12 and thyroid , have you had folate, ferritin and a full blood count(FBC)?

There can be useful clues on a FBC. High MCV and high MCH on FBC can indicate the possibility of macrocytosis(enlarged red blood cells). Macrocytosis is sometimes found in people with b12 deficiency and can also occur in those with folate deficiency.

Macrocytosis can be masked in someone who is b12 or folate deficient if they also have iron deficiency. low iron can lead to microcytosis (small red blood cells).


Rachf1986 Please do NOT take any B12 until you have the results, because further testing might be needed!! Read some of the links given above and our Pinned Posts on the homepage of this forum while you wait. I know it seems long, but it's only a couple of days. Ask for a copy of the results tuesday to take home with you.

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Thanks everyone. I Will get a copy of my results and then hopefully go from there.

I was taking a multivit daily anyway from when I was breast feeding. I did have gas and air but baby was born back in November.

I had a look at PAS at their symptom list and I have a lot of the symptoms but also Tick a lot of symptoms for hypothyroid. My main concern is my legs as they are just seem to not work properly and so weakand heavy.

Thanks again for all advice/ help xx


Have same symptoms and am on supplements but never knew til this site what i had. Be firm with your Dr. I'm lucky, all I have to do is ask and he orders tests. As for thyroid, insist on the '6 panel test' as the one done in office is not reliable and you get detailed results. Be well & Stay safe...will be thinkin of and hoping good things for you



I date some of my problems back to when I gave birth, had lots of gas and air, but at that point I knew nothing about the risks of it causing B12 deficiency.

During my pregnancy, I just accepted when i was told "all your blood tests are fine" and never queried or asked for copies. I wish I had done so. I had post natal depression which I now think may have been triggered by the effect of nitrous oxide on B12 levels. I also had a severe migraine with a few days of giving birth which I also suspect was due to a fall in b12 levels.

I think that after a drop in B12 levels due to nitrous oxide, levels might take a while to build up again.

More links about nitrous oxide.

There is a chapter in the book "Could It Be B12" that mentions the effects of nitrous oxide.

I also wondered if you had ever been tested for Coeliac disease. Having Coeliac disease can lead to B12 deficiency as it can affect the gut and therefore lead to absorption problems.

Info about thyroid problems

There is a Thyroid Uk forum on Hu which is very active.


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