Newbie and Advice would be greatly appreciated

[Maud04]

Good evening,

I am new here and have recently been diagnosed as hypothyroid but this week I finally got a B12 test from my GP (I cheated and asked the nurse)

It turns out it is low .....but I am to do nothing and have it checked again in one month Is this the usual protocol?

After reading posts re symptoms I now wonder whether at least some of my symptoms are B12 related.

Dizzy and really struggle to walk in the dark (I am like a drunkard)

Clumsy bang into things a lot

Sore mouth particlarly my tongue Some days it is like pins and needles in my toungue other days it is just sore and especially painful to eat.

Apalling memory (Never been good but recently some days I cannot remember the names of people I have known for years (for a few minutes or find words for things).

Numb big toe and part of the ball of my left foot.

Pins and needled in hands.

Sore back/ribs but not all the time.

Heavy/painful legs and arms

I have left out the ones i think are definately connected to thyroid issues.

The following are the results I got from GP on Thursday

Any help would be greatly appreciated

VITAMIN ASSAYS

Vitamin B12 176 pg/ml *L( >200 )

Serum folate7.1 ng/ml (>2 )

GENERAL BIOCHEMISTRY COMPOSITE

sodium 139 mmol/L (133 - 146)

Potassium 4.1 mmol/L (3.5 - 5.3)

chloride 101 mmol/L (95 - 108)

Urea 5.2 mmol/L (2.5 - 7.8)

creatinine 73 umol/L (50 - 100)

Estimated GFR >60 ml/min/1.73m^2

Bilirubin 9 umol/L (<21)

Alk, Phos. 50 u/L (30 - 130)

ALT 20 u/L (5 - 55)

Albumin 41 g/L (35 - 50)

Calcium 2.38 mmol/L (2.20 - 2.60)

Adjusted Calcium 2.36 mmol/L (2.20 - 2.60)

C-Reactive Protien <5 mg/L (0 - 9 )

GLUCOSE

4.4 mmol/L (Random 3.5 - 5.5)

FULL BLOOD COUNT 10^9/L

Haemoglobin 131 g/L (118 - 148) white blood cells 8.2 (4.0 - 11.0)

RBC 4.09 10^12/L (3.9-5.0) Neutrophils 4.6 (2.0-7.5)

HCT 0.383 (0.36 - 0.44) Lymphocytes 2.7 (1.5-4.0)

MCV 93.8 fl (80.0 - 98.0) Monocytes 0.4 (0.2 - 1)

MCH 32.0 pg (27.0 - 32.0) Eosinophils 0.2 (0.1 - 0.7)

MCHC 341 g/L (310 - 360) Basophils 0.2 (0.0 - 0.2)

RDW 13.4% (10 - 14) Myelocytes

%HYPO 1.9 Promyelocytes

PLATLETS 261 10^9L (150 - 400)

MPV 9.2 fl

[fbirder]

No it's not standard protocol.

The recommended process is to start fixing the deficiency ASAP - with a course of injections - before serious damage can happen.

Once you start injections monitoring B12 is pointless.

The next step is to attempt to identify the source of the deficiency.

I'll bet your doc is one of those that think Pernicious Anaemia means large blood cells (macrocytosis). But your blood cells as shown by the MCV (Mean Cell Volume) are within range (although near the top of it). Many people with PA do not have large cells.

Read through the pinned posts (over on the right on the main PAS page) and you should find plenty of information to support your case.

[Maud04 in reply to fbirder]

Thank you fbirder,

That is what he told me that my blood cells were normal and usually people with B12 deficiency had enlarged cells so they would need to check again in a month.

It would seem from what you have told me and the good folk on the thyroid site that my doctor is a muppet

Thanks again for your reply, just not sure what to do now.....

Kind Regards

Maud04

[PAS-admin Partner in reply to Maud04]

yes, he's a muppet..

Read up on B12def and maybe print the guidelines for your doc. Make an appointment and insist on immediate treatemnt as you have clear B12def symptoms and neurologic. You should have been put on injections straight away. Point out to the doc (it's in the info and links) that enlarged read blood cells are often absent as is anaemia. This has been known for about, well, more than a centuray. He might try and read up a bit and get in to the 21st like the rest of us...If he refuses, get a referral to a specialist or get another GP asap. With neur symptoms it is extremely important to get treatment and the right one quickly. Goodluck.

[Maud04 in reply to PAS-admin]

Than you PAS-admin,

I just do not know why everything has to be such a struggle...

Kind regards

Maud04

[Secondchance in reply to Maud04]

B12 and folate deficiency both are common causes of macrocytosis (large red blood cells) but not all people with deficiency have it. BCSH guidelines state 25% present with neurological symptoms. These are obviously harder to treat as guidelines recommend more B12 loading doses and maintenance treatment.

Unfortunately most doctors do not seem to know this.

[Polaris]

Page 3 under 'Neurological Features' of the latest BMJ research document might help. It also has a useful summary :

cmim.org/pdf2014/funcion.ph...

"An estimated 20% of patients with neurological signs do not manifest anaemia.13 Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia. Neurological symptoms can occur in isolation so it is important to consider a diagnosis of vitamin B12 deficiency in the presence of neurological symptoms of unknown cause, as neurological features may progress and become irreversible.

Subacute combined degeneration of the spinal cord involves demyelination of the posterior and lateral tracts. Initial bilateral peripheral neuropathy can progress to axonal degeneration and neuronal death if left untreated. This is followed by disturbances of proprioception, vibratory sense, and areflexia. Patients may mention clumsiness, poor coordination, and difficulty walking. Without treatment, weakness and stiffness may develop, manifesting as spastic ataxia. Damage to peripheral nerves results in sleepiness, altered taste and smell, and optic atrophy"

and more links you may not have seen:

ukneqas-haematinics.org... :

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. "

b12deficiency.info/what-to-...

I hope all goes well for you Maud04

[Maud04 in reply to Polaris]

Thank you Polaris,

Now to find the courage to tackle my GP

Kind regards

Maud04

[Polaris in reply to Maud04]

Good luck Maud04.

In many other European countries and Japan, your B12 levels would be considered very low so what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', an excellent book by Sally Pacholok and Dr J.J. Stuart.

[Sleepybunny]

I found Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" useful and gave a copy to my GPs along with a copy of the PAS Symptoms list with all my symptoms ticked.

pernicious-anaemia-society....

I also gave them a copy of the "BCSH Cobalamin and Folate Guidelines" I found page 29 and page 8 particularly useful.

Page 29 is a diagnosis flowchart that shows the process a GP should go through if they suspect someone has a B12 deficiency.

Another symptoms list

b12deficiency.info/signs-an...

I can't see a ferritin test amongst your results.

If iron levels are low then macrocytosis (enlarged red blood cells) may be masked because low iron can lead to microcytosis (small red blood cells).

If a person has both low iron and low B12/low folate then a test called a blood smear (also known as blood film)may show both macrocytic and microcytic cells in the same sample.

b12deficiency.info/b12-test...

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

martynhooper.com/

b12d.org

[Sleepybunny]

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

[Maud04]

Thank you Sleepbunny,

I thought it was strange that I basically had to wait a month to get tested/treated because I cannot see that the results would improve very much when I have been told by the GP not to self medicate, but as previosly mentioned I think he is a muppet .... have thought I had a B12 deficiency for months now and have been asking for a test which he never arranged. I was just cheeky and asked the nurse who kindly obliged.... but think I will have to go to Blue Horizon and get bloods done as I do not think he will do folate ferretin and Vit D !

I am going to read all the links you have posted for me I am extremely grateful for this as with my brain fog it can all get a little tricky

Many thanks and kind regards

Maud04

[Foggyme Administrator in reply to Maud04]

Hi Maud04. Just to let you know...as you have. B12 deficiency, your doctor should do folate, ferritin and vitamin D blood tests as a matter of course! Your GP may not know this.

You should be forced to go and pay privately...but many do!

Why not go back armed with your new information and insist that a) you are given the appropriate treatment and B) that you have the blood tests....according to the guidelines!

As others have said, and especially as you have neurological symptoms, it's really important that you a treated with B12 immediately.

The treatment for B12 deficiency with neurological symptoms is 1mg every other day until no further improvement and then 1mg every eight weeks....although this is not always be ought to keep some people symptom free.

Your GP may not know about the '1mg every other day until no further improvement' regime (many don't). It's listed in something called the British National Formulary (BNF). Your GP will have a copy on their desk so,it will be easy to as him / her to look it up. You may have to encourage them to read further than usual....it's the second item down!

Good luck.....let us know how you get on xx

[Maud04]

Thakyou Foggyme

I will try and pluck up the courage to do this Must make some notes and try get some of the links sent to me printed off to take with me.

Kind regards

Maud04