Results help..: Hi everyone, I wondered... - Pernicious Anaemi...

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Results help..

Daisya31 profile image
Daisya31
ā€¢16 Replies

Hi everyone, I wondered what you thought of the following, if you saw these results and knew my symptoms - what would you say?... I have constant exhaustion, flickery eyes, peripheral neuropathy, mild alopecia, ulcerative colitis, poor memory, thinking fogs, bad mood swings, depression and anxiety - I'm sure there is more but I don't want to bore you all!

Magnesium 0.83 (0.7-1)

Copper 27 (12-20)

Iron 21 (7-30)

Transferrin 3.1 (2-3.4)

Transferrin saturation 27 (20-60)

MCV 87.1 (81-100)

Serum VitD 54

Free T4 14.2 (9-22.7)

Serum TSH 2.04 (0.35-5.5)

Thyroid antibodies <33 (0-60)

Ferritin 14 (10-291)

Folate 8.5 (2.8-19)

B12 238 (211-911)

Sorry! I'm getting nowhere with my GP, now just goes on about lifestyle choices, anti-depressants and counselling.. I've just had enough. Please help me interpret these - I feel like something is off in me but can't get any help šŸ˜•

Many thanks x

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Daisya31
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Sleepybunny profile image
Sleepybunny

Hi,

Are you UK based?

The symptoms you mention can be found in people who have B12 deficiency. Have you looked at these lists?

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Symptoms Checklist in here.

Your B12 is at a level where some people find they are symptomatic for B12 deficiency. I was symptomatic with levels in 300s and 400s.

Blood Test Info

b12deficiency.info/b12-test...

These tests are available privately if GP won't order them. A blood film aka blood smear can also help in diagnosis of B12 deficiency.

patient.info/doctor/macrocytosis-and-macrocytic-anaemia

patient.info/doctor/pernici...

patient.info/doctor/periphe...

patient.info/doctor/full-bl...

patient.info/doctor/folate-...

Recent Documents

Recent articles make it clear that patients who are symptomatic for B12 deficiency should be treated even if B12 levels are "normal" range.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

The PAS website has a summary of above document in library section.

Useful websites

b12deficiency.info/

b12d.org/

pernicious-anaemia-society....

01656 769467

Office open 8am till 2pm every day except Sundays.

If you leave a message they will get back to you.

martynhooper.com/

Useful books

"Could It Be B12" by Sally Pacholok and JJ, Stuart

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

Martyn Hooper is the chair of the PAS and has written several books on PA and B12 deficiency.

2Old profile image
2Oldā€¢ in reply toSleepybunny

You're great with the links, SleepyBunny.

Daisya31 profile image
Daisya31ā€¢ in reply toSleepybunny

Wow! Thank you! Now at least Ivan read and be informed before I go in next. Much appreciated x

Clarealbinson profile image
Clarealbinson

The experience of most people here is that no matter how much evidence you provide to your GP unless you have very low blood serum they wont even think of testing or treating you for low B12. If you want to know for yourself you could start taking sublingual methylcobalamin and see what happens. I've heard of a test that requires taking 50 mgs of it. (You cannot overdose on B12) If it helps you, it means you were deficient. If you are made worse (the healing symptoms can be awful) you are deficient. If you notice no difference then you dont have it.

I didnt have the guts to do that, but I have been taking sublingual B12 at increasing doses of 1/5/10/20mgs and do feel a lot better for it. Unfortunately there were a lot of healing symptoms along the way.

Daisya31 profile image
Daisya31ā€¢ in reply toClarealbinson

Thanks for your help! What symptoms did you have?

Clarealbinson profile image
Clarealbinsonā€¢ in reply toDaisya31

Oh boy. Do you really want to know?? Such a lot...

Poor nails - got better almost immediately with B12.

Brain fog - a bit better with B12

Poor sleep- much better after b12

Depression (quite bad at night). -much better after B12 hydroxocobalamin seems to help a lot with this.

Blurred eyesight- not helped as yet by B12 -often worse.

Extreme thirst and increased urination - better after B12

Mucus and congestion - better after B12

Extreme tiredness - better after B12

Peripheral neuropathy (tingling in hands and feet and feeling thy weren't there) - better after B12

Diarrhoea -better after B12

Difficulty swallowing - better after B12

A lot of the symptoms did get worse at first, brain fog, eyesight, also I got glossitis (red and sore tongue) and a feeling of pressure on my chest, which was a bit scary. The last two have gone, the other two are still there.

2Old profile image
2Old

Sorry, I don't generally know what test results mean, but by the symptoms:

B12 deficiency most definitely, magnesium deficiency, other b deficiency B2, B6, D3 deficiency, and possible thyroid trouble.

Start taking sublingual B12 right away -- 20,000 mcg a day, and one general tablet of the others. You should notice some changes within a month.

Daisya31 profile image
Daisya31ā€¢ in reply to2Old

Thanks - I have started supplementing but no real changes yet, how long do you think they'd take to show any signs of working?

2Old profile image
2Oldā€¢ in reply toDaisya31

When I first started taking sublinguals, my feet and legs hurt so much, I could barely walk. Within a month, I saw a great improvement. It took about three months before every little thing I had to do seemed too overwhelming. I still get tired really fast, and have days at a time where I am exhausted, but not as bad as before. It has taken three years to feel like I CAN get better altogether. So, it varies, but in a month or two, you should definitely notice a change for the better.

BTW, there are also B12 oils that you can rub into your skin. See Chris Kresser's B12 site.

Laura5 profile image
Laura5

Your ferritin is way too low. Are you taking iron supplements?

Daisya31 profile image
Daisya31ā€¢ in reply toLaura5

Only started last week, thank you!

Polaris profile image
Polaris

You are in at least two high risk groups for B12 deficiency Daisy - autoimmune thyroid disease (great advice on thyroid UK site here) and colitis, which could mean that you are having absorption problems with B12, as your serum result is low, despite many GPs considering this a normal result:

"deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550pg/ml".

This is probably leading to the neurological symptoms, as B12 is specific to the myelin surrounding the brain and spinal cord, which should be treated with B12 injections without delay to avoid irreversible damage - as per the BNF - see BCSH guidelines given by SBunny.

SBunny also give links to B12 deficiency site, which has templates for writing to your GP and it may help to take someone with you to your next appointment to emphasise the seriousness of not treating as soon as possible.

If GP still refuses to treat, many people on the site self inject successfully.

I do hope your GP will listen and act promptly. Very best wishes.

Daisya31 profile image
Daisya31ā€¢ in reply toPolaris

Thank you! I think my problem with my GP is that I went to him initially asking for all the above tests with a view it was my thyroid and he says no... Therefore I feel going back again to stress the b12 and ferritin will fall again on dear ears... I'm tempted to self inject just to see if I feel better... Thanks for your advice, I'm going to get a letter together again for him! šŸ˜‰

Sleepybunny profile image
Sleepybunnyā€¢ in reply toDaisya31

"I'm going to get a letter together again"

This is a link with examples of letters to write to GP about B12 deficiency.

b12deficiency.info/b12-writ...

"I have started supplementing"

"I'm tempted to self inject"

People have to make their own decisions on whether or not to self treat but sometimes taking supplements can affect blood test results and can make it difficult to get a diagnosis.

See link below.

b12deficiency.info/b12-test...

I did in the end choose to self treat because I could not get treatment from NHS even though I was highly symptomatic but I sometimes wonder if I made the right decision. Selt treatment has made it virtually impossible to get a diagnosis from NHS.

Galixie profile image
Galixie

As Laura5 pointed out, you are on your way to iron deficiency. Your serum iron level is good and you have a good level of transferrin, but your level of stored iron "Ferritin 14 (10-291)" is becoming depleted. That will eventually bring your serum iron level down and cause iron deficiency anemia.

As others have pointed out, there is a wide gray-area where serum B12 levels can appear in the normal range but still be functionally low.

The extra challenging part is that if a patient has both iron deficiency and B12 deficiency at the same time it can cause a 'false normal' on some of the other tests. For example the MCV will appear normal instead of elevated. This happens because one type of anemia causes red blood cells to become smaller (iron deficiency) while another type causes red blood cells to become larger (B12 deficiency) and the MCV, mean cell volume, takes the average size of all the cells sampled and thus comes to a very normal looking result. If the same sample of cells were examined under a microscope, however, it would be apparent that the cell sizes are not homogenous and the wild variation would indicate co-existing anemias.

I'm not a doctor, I've just had some experience with false normal results due to having multiple anemias. The UC does put you at a much higher risk for malabsorption of all nutrients. Have you managed to get that fairly well controlled? It is important to have a good balance of iron and folate as well as B12 in order to get the maximum benefit.

SAMBS profile image
SAMBS

Hi Daisy A31,

Can't help with blood results but a lot of of what is going on your head,/I.e, BRAIN, could well be caused by meds that dont go well together. Some of your symptoms could also be connected with a Thyroid problem, have you been checked for that?

Finally, antidepressants are the worst thing to take, if you are also on other meds, whether shop bought or prescribed, they do all get processed through the liver at some point,where they may have collected as toxins, before the blood circulation sytem takes it to the brain, and that does start messing with your Brain, giving rise to many of the other symptoms, I.e. Eyes/vision - mood swings - peripheral neuropathy,

I speak from personal experience and hindsight knowledge now ! Having been prescribed 2 meds thT didn't go well together, 1 for a condition It turns out I didn't have. I did have a spontaneous aneurysm and brain haemorrhage the following year though in 2013 so I know only too well effects of a Brain Injury, all same as your symptoms plus a few physical ones, like talking And walking properly. All followed by unspecified cirrhosis,,the obvious things ruled out like Can and Al. I'm also now autoimmune, which is probably not connected.

It's your neural symtoms that concern me though and I'd say it's likely down to what's meds you are on, if you are taking them correctly or not, as well as the food you are eating or not. Many of today's conditions, seem to stem from the Endocrine System, if that is out of sorts, it seems to lead to neurological problems. Check out your meds on drugs.com. Possibly even do a detox!

I'm not medically trained at all , but I've recently done a lot of research for my own health, via Hon Code and Trusted websites. I know what are my BI effects as well as wrong med effects, but the fog, vision, anxiety, depression could well be caused by meds and stress.

For your Thyroid results check out Thyroid UK, also a HU Community, the admins there are brill there with test results related to that. they usually recommend asking for a test for Free T3 and FreeT4, folate, ferritin, Vit B12. So just post your Thyroid related results on there for now!

You can even see for yourself which tests are within Norm. Some of your Thyroid results are within range, a couple at the low end. Dont know about the Vit D.

I'm on a monthly liquid prescription only dose of Vit D3. But copy and paste from your Vit D result down to the end and also post on Thyroid UK.

Hope it helps.

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