What next? Test results are normal....

Hi all, after many months of lurking, have finally signed up as I'm at my wits end as to what to do.

Back in May 2017, after many years of prevaricating for fear of being treated like the village hypochondriac, I finally went to see my GP about the myriad of symptoms I was feeling. He ordered a full range of blood tests, and we both suspected it was going to come back indicating I was Hypo.

Results were:

4/5/17:

FBC

Haemoglobin Concentration - 128g (115.0 - 150.0)

Total White Blood Count - 6.3 (3.5 - 11.0)

Platelet Count (observation) - 263 (140.0 - 400.0)

Haematocrit - 0.374 (0.36 - 0.46)

Red Blood Cell Count - 4.41 (3.8 - 5.0)

Mean Cell Volume - 84.8 (80.0 - 99.0)

Mean Cell Haemoglobin Level - 29.0 (27.5 - 32.5)

Mean Cell Haemoglobin Concentration - 342 (310.0 - 350.0)

Neutrophil Count - 3.58 (1.7 - 8.0)

Lymphocyte Count - 2.02 (1.0 - 4.0)

Monocyte Count (observation) - 0.62 (0.2 - 0.8)

Eosinophil Count (observation) - 0.04 (0.04 - 0.4)

Basophil Count - 0.02 (0.2 - 0.1)

Nucleated Red Blood Cell Count - 0.00 (NA)

Bone Profile:

Serum Calcium - 2.15 (2.2 - 2.6) low

Serum Albumin - 44 (35.0 - 50.0)

Serum adjusted Calcium Concentration - 2.07 (2.2 - 2.6) low

Serum Inorganic Phosphate Level - 1.26 (0.8 - 1.5)

Serum Total 25-hydroxy vitamin D Level - 21.1 (>50 indicates suffiency, <30 indicates deficiency) low

Electrolytes

Serum Sodium - 142 (133.0 - 146.0)

Serum Potassium - 4.2 (3.5 - 5.3)

Serum Chloride - 108 (95.0 - 108.0)

Serum Creatinine - 64 (48.0 - 128.0)

Serum Urea - 5.6 (2.5 - 7.8)

GFR calculated abbreviated MDRD - >90 mL/min/1.73m*2 (NA)

Serum C Reative Protein - 7 (<10.0)

Liver, Kidneys and Diabetes

Serum Total Bilirubin - 15 (<21.0)

Serum Alkaline Phosphatase - 63 (30.0 - 130.0)

Serum Alanine Aminotransferase - 10 (<40.0)

Acute Kidney Injury Warning Stage - AKI Stage NA - No Flag Alert

Haemoglobin A1c level - IFCC standardised - 33 (20.0 - 42.0)

Misc.

TSH - 1.2 (0.2 - 4.0)

Serum Vitamin B12 - 187 (211.0 - 911.0) low

Serum Ferritin - 57 (10.0 - 291.0)

Serum Folate - 7.6 (3.0 - 14.4)

As you can see, it flagged B12, vitamin D and Calcium levels. The GP expressed concern that my sodium and chloride levels were so high and told me to cut back on the salt. I told him that I tried, but as I'd noted in my symptoms diary, I craved it all the time. He just shrugged and said I should ignore my cravings and cut it out of my diet.

As for the B12, I was put on the 2 weeks of loading doses and then 3monthly injections, and given 7 weeks of tablets for the vitamin D. After discussion, the Calcium wasn't supplemented because we assumed it was due to the D deficiency rather than lack of calcium in my diet.

We did discuss my diet, and we came to the conclusion that it wasn't lack of B12 in my diet causing the deficiency, but GP was uninterested in discovering the cause, so do I have PA or is it something else? Unknown.

In June I was tested again to check my levels:

12/6/17

Serum Vitamin B12 - >2000 (211.0 - 911.0)

Serum Folate - 7.1 (3.0 - 14.4)

I can't find the sheet with the D results, but I recall that they were 57. I was told this was just over the line of sufficiency, so I was to supplement with OTC and we would retest in the New Year.

The only thing is, I didn't feel great. In fact, many of my symptoms, particularly tiredness, aphasia, memory fog etc. continued. So I did some googling and roaming and came across the guidelines for B12 treatment when there are neurological symptoms. So off I tootled back to the Doc in Sept. He told me that the neurological symptoms I were suffering was an issue of my known mental health issues (depression and anxiety) and that extra B12 injections wouldn't help. In fact, he added, the fact I felt reasonable for 3-4 weeks post injection before dropping off again suggestion that it was all physcological and that I should return to therapy and perhaps start on anti-depression medication. To offer me 'reassurance' that it can't be my B12 causing this, we retested them.

29/9/17

Serum Vit. B12 - >2000 (211.0 - 911.0)

Serum Folate - 6.5 (3.0 - 14.4)

And that, apparently, was that. I have already come to the conclusion that if the NHS won't offer more frequent injections, then I shall have to do it myself. I have got some sublingual drops, but haven't started on them yet as I didn't want them to impact on some private tests I've paid for.

Roaming in the thyroid section of this board has made me well aware that TSH levels don't necessarily mean much on their own. So I paid for thyroid checks:

11/10/17

Thyroid

TSH - 1.21 (0.27 - 4.2)

FT4 - 19.8 (12.0 - 22.0)

FT3 - 5.3 (3.1 - 6.8)

TT4 - 129 (59 - 154)

Thyroid Peroxidase Antibodies - 21 (0 - 115)

Thyroglobulin Antibodies - 21 (0 - 34)

Misc

Serum C Reactive Protein - 1.9 (<5)

Serum Vit. B12 - >2000 (197 - 771)

Serum Ferritin - haemolysed

Serum Folate - haemolysed

I've been sent another kit for the ferritin and folate so hopefully in the coming week I can get it right this time and get some results on those levels.

But to my untrained eye, those thyroid results look pretty fine and dandy, so it's not my thyroid.

I do resent being fobbed off with the "it's all in your head" and will seek a second opinion with another GP - I'm just not entirely sure what to advocate. What exactly do I push for? Is it worth the agro of trying to get more B12 injections if I'm using the drops at home? God only knows. Is the first GP right, in the sense that it isn't my B12? But if it's not, what is it? As I said at the beginning, I'm at my wits end and have no idea what to do.

Thanks in advance for working your way through the wall of text, and I'd be grateful for any advice.

[Hidden]

Apologies for the lack of gaps to make paragraphs more readable - every time I try I get a bar saying my post has been flagged as inappropriate, so I'm not entirely certain as to what I'm doing wrong.

[JMN2017 in reply to Hidden]

Hi Hidden

First of all, {{{Hugs}}}

As for the paragraphing, it looks/reads fine, in my opinion, so don't worry any further about that

Well, it sounds to me that your GP could be listening more to your symptoms than looking at blood results. I understand depression and/or anxiety can be symptoms of lack of B12 so I wouldn't consider antidepressants/psychiatric therapy required, although certainly councelling could be very useful, if only to get tips on how to convince your GP!!!

As for seeking a 2nd opinion / another GP, you could run into the same issue. It does very much seem that medical staff, no matter how well trained, what speciality etc, do not give much, if any, importance to B12 issues. They'd rather prescribe costly medications to treat symptoms rather than much cheaper prescription of B12. This is very widespread and not doing us any favours.

Experience with my own GP, and others in the Practice, has been that they don't recognise B12 deficiency unless ALL the blood test results are out of range and, even then, still tell you it's in your head etc. As a result, many sufferers self-inject, myself included. I now feel so much better, have seen my GP to 'enlighten' him but he still maintains I am NOT B12 deficient - on the basis that all results are within normal range!!! Ha, in fact, my B12 is below range and Folate above range, with high Homocysteine but still he's not convinced. I've left him with Martyn Hooper's book and copies of NICE and BNF guidelines, plus articles from BMJ so I don't know what else will convince him!

So, only you can decide whether to keep researching, pushing your doctor and give him copies of articles (preferably written by recoginsed doctors published in BMJ etc) and / or upping your amount of self dosing / going on to injections (not expensive to do)

There is a lot of experience, knowledge etc on here and I'm sure someone, with much more experience and knowledge than myself, will be along with some good advice.

Wishing you all the best

[Sleepybunny]

Hi,

Here's some links and info that might be useful

Are you in UK? I'm asking as patterns of B12 treatment vary from country to country.

If in UK, I'd suggest reading following

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Cobalamin is the scientific name for B12.

Document outlines diagnosis and treatment of B12 deficiency including PA (Pernicious Anaemia).

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK.

Also makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat people who are symptomatic for B12 deficiency even if b12 result is within normal range.

3) BNF British National Formulary Chapter 9 Section 1.2

Details of UK B12 treatment.

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

B12 Deficiency Symptoms

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 Books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

B12 blogs

May be relevant stories on Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

Also an interesting blog on "B12 Deficiency Info" website

b12deficiency.info/

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone]

If you think PA is a possibility, it may be worth joining PAS. They can offer support and info.

Blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Lots more B12 info in pinned posts on this forum. I found the summary of B12 documents in third pinned post useful to read.

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of neurological symptoms.

GP may not be aware that untreated or inadequately treated B12 deficiency can lead to permanent neuro damage including spinal problems.

I think some forum members struggling to get correct level of treatment have included info about SACD in letters or shown their GPs articles about SACD sub acute combined degeneration of the spinal cord.

PAS members can access an article about SACD on PAS website. Costs £20 a year to join PAS.

pernicious-anaemia-society....

SACD is mentioned in this PAS news item about neurological consequences of PA.

pernicious-anaemia-society....

CAB

citizensadvice.org.uk/health/

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

[Hidden in reply to Sleepybunny]

Sleepybunny I am indeed in the UK, yes.

My GP didn't mention anything about a test for Intrinsic Factor - as I said, once he'd established that a deficiency was there and it wasn't dietary, he was unconcerned about following it further. Will having injections skew this result if I try and push for the test with another GP?

When I returned to my GP in September, I tried to advocate for more frequent injections, citing what I'd read about treating B12 deficiency with neurological symptoms; his response was to tell me that my continuing symptoms were psychological in nature and that more frequent B12 injections would not help and I should consider additional therapy and anti-depression medication.

I'm not well. I know that. The list of symptoms you linked to - I could tick off the vast majority of them even though treatment for my deficiency has started. In some cases, they're getting worse. But when I try and point that out all I get is "it's your depression," with no consideration that it could be anything else. My GP told me that it can't be anything physical, because he's done all the tests so what I'm feeling now is pyschological in nature.

I just don't know whether he is right - is my B12 fine dabby doozy now, and that it's something else causing those issues? Because I didn't expect an overnight cure, but I didn't expect to get worse. That's my issue - do I go to another GP and push for more B12 treatment, or do I assume GP 1 is right and pursue something else?

Can I also ask - what I have noticed is that each time I have a folate test, it's going down. Yes, granted, it's nowhere near being underrange, but is that normal when treating B12? Is it best to supplement folate?

[Sleepybunny in reply to Hidden]

Hi,

"Will having injections skew this result if I try and push for the test with another GP? "

I think having an IFA Intrinsic Factor Antibody test close to a B12 injection can lead to false positive results.

This link below mentions leaving at least 48 hours and up to 2 weeks after a B12 injection before having an IFA test.

labtestsonline.org/understa...

PAS (Pernicious Anaemia Society) might be able to tell you more about IFA test.

pernicious-anaemia-society....

PAS tel no [phone]

Good idea to try another GP...they might be more receptive to info eg flowchart from BSH Cobalamin and Folate Guidelines that specifies an IFA test for those who are symptomatic for B12 deficiency.

stichtingb12tekort.nl/weten...

"when I try and point that out all I get is "it's your depression,""

Reading this is like reading about myself. I was told that depression was causing my symptoms and I kept trying to say that I was depressed because my symptoms were preventing me from living the life I wanted to.

"I just don't know whether he is right - is my B12 fine dabby doozy now,"

If you have PA, it will require lifelong B12 injections whatever your B12 level...

Have a look at the link in above post about writing letters.

A letter can take away some of the confrontation of face to face meetings although it can irritate some GPs.

If you can tick a lot of symptoms on PAS checklist (link in post above), perhaps it would be worth talking to PAS (pernicious Anaemia society)?

clivealive often comments about folate.

People on forum often comment that symptoms get worse for a while when treatment starts. Some people experience a drop in potassium levels when b12 treatment starts. Is GP monitoring potassium?

b12deficiency.info/what-to-... See Point 13

Problems with diagnosis

This link is to introductory page on B12 Deficiency Info website, it lists some of the problems patients with B12 deficiency face

b12deficiency.info/

Misconceptions about B12 deficiency

stichtingb12tekort.nl/weten...

[Hidden]

He's not monitoring anything, to be blunt. The only reason he did the most recent blood test was to prove to me that my B12 was fine so what I felt must be in my head. I wasn't aware of the possibility of potassium dropping, so thank you for the heads up. I've booked an appointment to see one of the senior GPs at my surgery, and am going down Thursday, so i shall bring that up. Just hoping this GP will be a bit more sensible and willing to listen.

Symptoms wise, of the symptoms on the page you linked to, I can still point to 50% of them even though treatment has started. That's not including symptoms not on that sheet.

[lunez22 in reply to Hidden]

I would also point out that your TSH is a little low, some people need to be higher in the range to feel okay (me included) one size does not fit all

also did anyone mention that salt cravings are a possible adrenal insufficiency sign? which could also explain fatigue and some other issues

and yes we all know anxiety can cause many things and/or exacerbate issues but my thyroid was slowing sliding hyper with pounding heart etc. trust your gut, and maybe you can get another gp?

good luck

[Hidden in reply to lunez22]

But all the rest of my thyroid tests:

TSH - 1.21 (0.27 - 4.2)

FT4 - 19.8 (12.0 - 22.0)

FT3 - 5.3 (3.1 - 6.8)

TT4 - 129 (59 - 154)

Thyroid Peroxidase Antibodies - 21 (0 - 115)

Thyroglobulin Antibodies - 21 (0 - 34)

Look alright. Or are they not alright? This is so confusing. I thought anything between 1-2 was pretty much ideal?

And Addison's did come up in our initial discussion, only because yours truly plays Dr Google and has a bingo card of what diabolical illnesses her symptoms can conjure up, but I was told that as I had neither hyperpigmentation or vitiligo then it was highly unlikely to be addison's so there was no point testing for it. I could always raise it again with GP #2 on Thursday.

Editing in - also, does addison's not usually manifest with LOW serum sodium levels? Mine are barely in range on the upper side.

[Hidden in reply to Hidden]

Got the Ferritin and Folate back (did it right this time! lol):

Ferritin - 57 ug/L (13 - 150)

Folate - 4.9 ug/L (>2.9)

So my folate has continued to drop, and is heading towards deficiency if I don't do anything soon.

I had my appointment with GP #2 today. He was very supportive - he agrees that it's a bit early to be heading down the "it's all in your head" route. As it's the first time he's dealt with me in regards to this issue he's taken all my symptoms lists and private test results away to ruminate upon, and is going to ring me next week to discuss where we go from there. He suspects, after looking at the multitude of symptoms, that it's going to be a refer to a specialist job, he's just not sure which one(s) it needs to be.

He's asked that I don't start any new supplements. I can continue my vitamin D supplements but doesn't want me on any more in case he has to order any tests which may get skewed by me dosing myself up. He did acknowledge that this request could leave me feeling rotten in the foreseeable future as my folate is quickly heading that way, but until next week at least, when he decides what to do, he needs me to stay as I am now.

We discussed the B12 guidelines re: extra dosing for neurological symptoms. He said it was something he would keep in mind whilst looking at my previous test results and symptoms lists. We also discussed the intrinsic factor test. Again, he will keep it in mind whilst he reads everything.

So all in all, he was much more supportive than GP #1, and hopefully he has some constructive thoughts for me next week.