Low B12 *Update after seeing unhelpful GP*

[Eoperez]

Hi,

I've been advised by thyroid page to post my recent results here to see if anyone can help me please.

After feeling lousy on my 175mcg of Levothyroxine I eventually convinced my GP to do some further blood tests that I'd read up on on various forums.

My last 2 thyroid blood results are as follows:

21/08/2017

TSH <0.05 (range 0.35 - 5.5)

Free T4 17 (range 9-23)

22/08/2016

TSH <0.05 (range 0.35 - 5.5)

Free T4 17 (range 9-23)

Free T3 5.1 (range 3.5 - 6.5)

She would not test free t3 or t4 again this time but had Ferritin, Folate, Full blood count & Vit D tested on 11 October and I'm still waiting Vit D result.

I got phonecall from receptionist to tell me my B12/folate was low and to supplement with high B12 foods and be re-tested in 6-12 weeks. Great I thought, until I started to look into symptoms of low B12 and I could tick loads off the list which also put my mind at ease a bit as thought I was going mad and wondered why I've been struggling to take a deep breath (which I thought was anxiety) and keep bumping into things (thought I had crap spacial awareness) and why I keep going dizzy. Other symptoms I have are night sweats, tinnitus (which I've had for years), mood swings, irratibillity, memory loss, brain fog, fluttery feeling in chest (like I'm excited), extreme fatigue all of which I've put down to my thyroid (Other than the shortness of breath and struggling to take a deep breath and clumsiness). I suffer numbness in my hands and feet which I thought was related to Raynauds. I also get part way through a conversation and then forget what I was going to say & my concentration is seriously lacking...which I put down to having a16 month old daughter.

Now I don't think I should be waiting weeks to have another blood test especially when I eat plenty of B12 rich foods (other than fish).

My results are as follows:

Serum B12: 172 ng/L (range 190.00-910.00)

Serum folate: 5.2 ng/mL (range 3.30-99999.00)

Serum ferritin: 14.7 ug/L (range 13.00-300.00) .

My white blood cell count are as follows:

Neutrophil Count: 2.9 (range 1.70-7.50)

Lymphocyte count: 1.7 (range 1.50-4.50)

Monocyte count: 0.3 (range 0.20-0.80)

Eosinophil count: 0 (range 0.00-0.40)

Basophil count: 0 (range 0.00-0.10)

They all have 10*9/L next to them although I'm unsure of the relevance of this.

Full blood count is as follows:

Total white cell count: 5 10*9/L (range 4.00-11.00)

Haemoglobin estimation: 137 g/L (range 115.00-165.00)

Platelet count: 258 10*9/L (range 150.00-400.00)

RBC count: 4.6 10*12/L (range 3.80-5.80)

Haematocrit: 0.42 1/1 (range 0.37-0.47)

MCV: 91.3 fL (range 80.00-100.00)

MCH: 29.8 pg (range 27.00-32.00)

MCHC: 326 g/L (range 320.00-360.00)

Red blood cell distribut width: 12.5% (range 11.00-14.80)

Any help would be greatly appreciated.

Thanks

[clivealive Forum Support]

Hi Eoperez if as you say you eat a healthy diet of B12 rich foods it may be that you have an absorption problem and if you have thyroid issues they may put you at risk of developing a B12 deficiency.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

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

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your Folate level is "bumping along the bottom of the range.

Your doctor may wish to test you for Intrinsic Factor Antibodies to rule out (or rule in) Pernicious Anaemia.

I am not a medically trained person so cannot comment on your thyroid results but there are others on here who will be able to give you good advice.

I wish you well

[Eoperez in reply to clivealive]

Thank you for your support and advice. Do you think I'm best asking for intrinsic factor antibodies test before asking for treatment?

Thanks

[clivealive Forum Support in reply to Eoperez]

More learned forum contributors than I have written:

"Times for testing"

"Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status.

You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12).

For testing intrinsic factor antibodies: keep one week between an injection and the test".

"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same."

The symptoms of PA are the symptoms of the B12 deficiency that it causes.

If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially.

Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life

"

I hope this helps and I bid you goodnight.

[Gambit62 Administrator]

you may have problems getting GP to act on the low B12 because your blood work isn't showing any obvious signs of macrocytosis - larger rounder red blood cells. If so then draw their attention to the fact that 25% of people who are B12 deficient don't initially present with macrocytosis. the guidelines also stress the importance of prompt treatment where there is neurological involvement and the treatment is slightly more aggressive than that where there is no neurological involvement.

source : BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies. GP can access these through the BNF but they are also available here

onlinelibrary.wiley.com/doi...

[Grannyweatherwax]

Woah

"Serum folate: 5.2 ng/mL (range 3.30-99999.00)"

I think you've typed that or copied it wrong - higher range of 99,999?

[Eoperez in reply to Grannyweatherwax]

That's what it says on my report!

[Grannyweatherwax in reply to Eoperez]

Fine, but no need to shout. *backs away under her rock*

[Eoperez in reply to Grannyweatherwax]

Sorry I wasn't shouting, just saying that's what my report shows, could very well be wrong, I have very little faith in the NHS at present

[Eoperez]

Well I've been to see the GP armed with my list of symptoms and some important facts about low B12 and she totally fobbed me off! She's told me she won't treat me as I'm not anaemic and that a lot of my symptoms aren't caused by low B12 and tried to tell me I'm depressed and anxious, highly surprised she didn't just write me a prescription out there and then for antidepressants.

She said if my b12 was like 60 then she'd start treatment even though I pointed out to her numerous times that it was below their range of 190 and asked would I not feel better if was at least within the huge range?

I feel totally deflated and fed up with being fobbed off and have had a few tears, partially cos I'm so frustrated but also cos I feel sorry for myself!

She told me she will retest me in 6-12 weeks as result might be a blip! She then agreed to test my intrinsic factor and paretial whatever in mid november then if pernicious anaemia will start me oon B12 injections once every 3 months for life probably. She didn't want to commit to lifelong treatment to which I told her I've been taking Levothyroxine since I was 15 so that really doesn't bother me! She told me to take a multivitamin containing B12 but not sure what to recommend as she was not read up on mutivitamins!

I mentioned that for many years I took metformin but she said that won't have effected my stomach at all.

Anyone got any further advice or do I just have to wait for next bloods?

[KimberinUS]

H pylori!!! It takes b12 and iron.

My hemoglobin looked fine but i wasnt. My MCV was only 95 so no overt macrocytosis but could have been masked by a high enough folate level, as foods in US are fortified. Of course my folate wasnt tested. My b12 was as low as 169 originally and came up to 246 after 16 months of supplimenting b12 with a good multivitamin AND a b100. And i felt worse by then!!! Granted i had had laughing gas at the dentist office between these readings because i was unaware it inactives b12, at the time.

I could take a deep breath the day after my first b12 shot (May 22, 2017) . I didnt even know i was struggling because it had developed over such a long period of time. I Stopped bumping into walls. My balance improved. My Face color suddenly matched the rest of my body after my 6th injection. I had always thought my face was a lighter color than the rest of my body because I used sunscreen on my face daily but that was not the case. I had paleness and stupid me didn't realize that was an issue either.

H pylori wasnt tested for until August of 2017, after i basically demanded it, because i had no stomach pain/overt symptoms. I was the only one looking for the root cause of my issues.

I was positive. Got h pylori treatment. Continued almost weekly b12 injections, additional 9 for a total of 18. Still felt somewhat crap. General fatigue (not the brutally crushing fatigue of a B12 deficiency which required 8 hours of sleep at night and a 3 hour nap daily), concentration issues, blurry vision, lack of motivation, and irritability. Started iron 3X daily. 5 days and im WAY better. I think all my iron/ferritin stores got used up over the last 5 months, due to getting the b12 injections which resulted in new healthy red blood cells which iron was able to attach to. My ferritin was 98, when it was tested on June 9th, after my 3rd b12 injection. My serum iron was at 69 and saturation rate was 20%. So i stopped taking iron at that time. Half moon has appeared on my left index finger with the increased dose!!