Need some help.

[EmJai]

Hi,

I have been out of sorts physically for about 5 years now and i'm trying to get things looked into, but i think i am going to have a fight on my hands.

In 2009 i started feeling unwell physically, just mild things, tiredness, very mild weakness/dizziness, I also started developing Rosacea. The thing is, these things were never looked into as i was suffering quite badly from Mental Illness and was highly medicated. Also, any blood tests at the time were just standard and as far as i know were normal.

In 2011 my health took a turn for the worse, i had a barrage of symptoms. Cognitive issues, weakness, fatigue, exhaustion, vertigo, mild pins and needles in arms and legs (on and off) Tinnitus, really bad stomach (constipation and diarrhea), strange shortness of breath sensations but not all the time, and some other things, including some strange (possible) psychological symptoms.

I was chatting to my Mum, whom at the time was having her own investigations about her health, explaining what i was going through and she told me she had just been diagnosed with PA and she has to have B12 shots for life. She also told me that My Nan and My Great Nan were also diagnosed with PA. She mentioned i get tested.

So off i went to the GP, armed with a list of my symptoms. All blood tests came back normal.

B12: 279pg/mL (246-911 pg/mL)

Folate: 5.5 ng/mL (2.5-17.0 ng/mL)

TSH: 1.85 mu/L (0.35-5.00 mu/L)

These are the only ones that i have to hand for my 2011 blood test.

My GP told me that i'm fine and perhaps i was becoming depressed and may need to talk to my Psychiatrist about upping my medication. I was also diagnosed with Hidradenitis Supparativa at this time, something i had been suffering with for years.

The kicker is, around this time i realised i was quite addicted to the z-drugs and benzodiazipines used to help with my Mental illness and was suffering from tolerance withdrawals, which could have explained away all the symptoms i was suffering from. So i got help with coming off these very slowly, which took just over 2 years to come off of, with all sorts of strange and weird symptoms which i just attributed to withdrawal throughout that time.

Now fast forward to now. I have been off the Benzodiazipines for about 6 months, bearing in mind i tapered slowly down to nothing over a long period of time and didn't just stop them. I am still struggling with my physical health in the same way and i'm at a point now where i can't possibly attribute all of these symptoms to the tablets i no longer take.

I feel absolutely awful on a daily basis, and i had a text from my Mum recdently telling me my Brother has just been diagnosed with PA (That makes 4 members of my family) after suffering with pins and needles in fingers and toes.

I haven't had a blood test for a while, so i went a long to GP and had a chat and she sent me for one. Other than Cholesterol, everything is normal and no action to be taken. I'm totally confused and wondering whether it is all in my head after all, wondering whether I should try and persue this any further. Any advice would be greatly appreciated.

Sorry for the length.

EmJai

Here are my results:

Serum Folate: 3.3 ug/L (2.00 – 17.00 ug/L)

Plasma B12 Level: 307 ng/L (200 – 900 ng/L)

Full Blood Count:

Total White Cell Count: 8.2 10*9/L (4.00 – 11.00 10*9/L)

Red Blood Cell Count: 4.62 10*12/L (3.50 – 5.50 10*12/L)

Haemoglobin estimation: 143 g/L (115.00 – 165.00 g/L)

Haematocrit: 0.44 ratio (0.37 – 0.47 ratio)

Mean Corpuscular volume (MCV): 96.3 fL (75.00 – 105.00 fL)

Red blood cell distribut width: 12.8 (11.00 – 15.00)

Mean corpusc. Haemoglobin (MCH): 30.9 pg (26.00 – 35.00 pg)

MCHC: 320 g/L (290.00 – 350.00 g/L)

Platelet count 243 10*9/L (150.00 -45.00 10*9/L)

Blood film microscopy:

Neutrophil count: 5.8 10*9/L (2.00 – 7.50 10*9/L)

Lymphocyte count: 1.6 10*9/L (1.00 – 4.00 10*9/L)

Monocyte count: 0.4 10*9/L (0.20 – 0.80 10*9/L)

Eosinophil count 0.2 10*9/L (0.00 – 0.40 10*9/L)

Basophil count: 0.0 10*9/L (0.00 – 0.10 10*9/L)

Bone Profile:

Serum Calcium: 2.30 mmol/L (2.10 – 2.60 mmol/L)

Corrected serum calcium level: 2.20 mmol/L (2.10 – 2.60 mmol/L)

Serum inorganic phosphate: 0.83 mmol/L (0.80 – 1.50 mmol/L)

Total alkaline phosphatase: 72 iu/L (30.00 - 130.00 iu/L)

Serum albumin: 45 g/L (35.00 – 50.00 g/L)

Erythocyte sedimentation rate: 18mm/h (00.00 – 10.00 mm/h)

C Reactive Protein: 26mg/L (00.00 – 10.00 mg/L)

These were high in 2011 if I remember rightly, but was told it was likely because of my Hidradenitis.

Serum TSH Level: 2.0 mu/L (0.32 – 5.00 mu/L)

Serum free T4 Level: 13.9 pmol/L (9.00 -24.00pmol/L)

Serum Cholesterol: 6.4 mmol/L

Liver Function:

Serum ALT level: 17 iu/L (0.00 – 50.00 iu/L)

Total alkaline phosphatase: 72 iu/L (30.00 - 130.00 iu/L)

Serum total bilirubin level: 4 umol/L (0.00 – 21.00 umol/L)

Serum albumin: 45 g/L (35.00 – 50.00 g/L)

Blood Glucose: 5.0 mmol/L (4.10 – 6.00 mmol/L)

Renal Profile:

Serum sodium: 139mmol/L (133.00 – 146.00 mmol/L)

Serum potassium: 4.7 mmol/L (3.50 – 5.30 mmol/L)

Serum creatinine 65 umol/L (49.00 – 90.00 umol/L)

Serum urea level: 4.8 mmol/L (2.50 – 7.80 mmol/L)

GFR calculated abbreviated MDRD: >60 mL/min (60.00 – 99999.00 mL/min)

[Gambit62 Administrator]

Although your B12 levels are in the normal range they are towards the low end of the range.

The Serum B12 test isn't the most accurate test available as it looks at total B12 and not just at the level of active B12 that you really need for healthy cell reproduction. You can get a test for active B12 done but the chances are that you would have to pay for it - but may be worth discussing with your GP. For a proper diagnosis of PA though you need to be tested for the relevant antibodies (IFA and PCA) that are destroying the mechanisms that normally allow you to absorb B12. However these aren't the only things that can cause you to have problems absorbing B12 - changes in acid levels in the gut being another potential cause. The CDC (US equivalent of NICE) has an area on its website devoted to promoting awareness of B12 which starts of with the headline that 1 in 31 (just over 3%) of people over 51 will be suffering from B12 deficiency.

Another stumbling, from my experience of GPs, is that they hear PA and seem to assume that this means you must have anaemia but that is actually a result of the cause - lack of B12 - and as people vary so much in the way deficiency progresses - it isn't a factor for everyone, particularly if B9 (folate levels) are good.

Both BNF and NICE guidelines are starting to move away from treatment on the basis of test results to treatment on the basis of symptoms so this might be another route to explore with your GP

There are checklists of symptoms available on PAS website and B12D.org

b12d.org/what-vitamin-b12-d...

pernicious-anaemia-society....

The fact that so many members of your family have been identified as having PA makes it much more likely that you may have or develop PA yourself.. Unfortunately as an autoimmune problem, it is also likely that you will have more than one autoimmune problem and as symptoms of B12 deficiency have a high overlap with other conditions that makes diagnosis quite difficult ... and doesn't rule out the existence of other conditions.

Depression itself is one symptom of B12 Deficiency, along with mood swings. B12Deficiency can be made worse by taking some anti-depressants (SSRIs) as they can affect B9 levels, but from the drugs you mention it sounds as if you haven't been treated with SSRIs. I have suffered from depression most of my life - though it does come and go I have certainly found that since I got to a point where I was able to keep my B12 levels high, the depression has gone though I still suffer from periods of intense anxiety (menstral cycle) but these aren't tipping me into depression and I am coping much better with stress than I have for many years.

Hope this helps a bit. Also hope that others can provide more support in interpreting all the other figures in your results.

[engels]

I'm no expert when it comes to interpreting blood test results but your folate (B9) level is far too low and your B12, given that the test is pretty useless, is at least borderline. I know from tests that I have had in the past that I would be feeling quite unwell with a blood serum B12 level of 307. B12 and folate are interdependent so you really need high levels of both. Supplementing B12 without also supplementing folate will almost certainly reduce your folate level even further.

[Hidden]

Hi Emjai,

From your blood tests it seems you have quite some inflammation going on, re:

"Erythocyte sedimentation rate: 18mm/h (00.00 – 10.00 mm/h)

C Reactive Protein: 26mg/L (00.00 – 10.00 mg/L)

These were high in 2011 if I remember rightly, but was told it was likely because of my Hidradenitis."

I can not find any info or know what Hidradenitis is, can you explain?

Your serum B12 loks OK, folate on the lower side but still OK, MCV getting high, it looks like its only a matter of time before you may end up with obvious blood results showing a p0roblem.

With your family history of PA and symptoms it seems you should have the active B12 test and most likely MMA to make sure you are not in the early stages of developing a B12 def/ PA.

See the new British Society for Haematology Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders:

bcshguidelines.com/document...

Summary of key recommendations

 The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency.

 Serum cobalamin remains the first line test currently, with additional second line plasma methylmalonic acid to help clarify uncertainties of underlying biochemical/functional deficiencies. Serum holotranscobalamin has the potential as a first line test, but an indeterminate ‘grey area’ may still exist. Plasma homocysteine may be helpful as a second line test, but is less specific than methylmalonic acid. The availability of these second-line tests is currently limited.

 Definitive cut-off points to define clinical and subclinical deficiency states are not possible, given the variety of methodologies used and technical issues, and local reference ranges should be established.

 In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.

 Treatment of cobalamin deficiency is recommended in line with the British National Formulary. Oral therapy may be suitable and acceptable provided appropriate doses are taken and compliance is not an issue.

 Serum folate offers equivalent diagnostic capability to red cell folate and is the first line test of choice to assess folate status.

Introduction.

For info about Active B12 test see:

active-b12.com/home

I hope this helps,

Kind regards,

Marre.

[engels in reply to Hidden]

A folate level of 3.3 isn't OK at all and the B12 serum test is useless so shouldn't be used as a guide to anything.

[BLVD]

Hello, I find it incredible that the NHS think that B12 readings under 500 are ok. In Japan they acknowledge that neurological damage starts at that level. One indication of a problem is macrocytosis. So you have that? I'm not an expert but just been suffering from the same problem. My B12 is now 1272 !!!!!! That's because I've been taking supplements but I still have symptoms. If you look up cyancobalamine (which the NHS prescribes) and methylcobalomine you will see the difference. I don't think the B12 is getting into my cells although my blood is full of it. My intrinsic factor is though.Is yours? This is when you get pernicious anaemia. It's strange. You HAVE p a deficiency at that low level. See if you can get hold of the methyl B12s, Amazon sell them. And good luck Lynn.

[engels in reply to BLVD]

The standard NHS treatment for B12 deficiency is hydroxocobalamin injections, not cyanocobalamin. Cyanocobalamin tablets are sometimes prescribed in the rare cases where the B12 deficiency is related to diet.

[BLVD in reply to engels]

My doc said injections were too expensive and if I had a deficiency (being vegan and taking H2 blockers for a hiatus hernia) he would prescribe the cyancobalamine B12s! Never heard of methylcobalamin ( which is far better and doesn't contain cyanide! )

[engels in reply to BLVD]

A hydroxocobalamin injection costs the NHS 69p so can hardly be called expensive. I suppose the real cost is in the time for a nurse or doctor to carry out the injection but that is easily overcome by teaching patients how to do their own injections at home.

Saying that methylcobalamin is better is far too simplistic. Methyl may work for you but some people do not respond to methyl at all. I've never tried methyl injections but back in 2007-2008, when I was struggling on the standard 3 monthly hydroxo injection regime, I tried methyl sublingual tablets and a methyl sublingual spray and they did not help me at all. There were a lot of similar experiences on the old PAS forum. I eventually took my treatment into my own hands and started doing my own hydroxo injections at the frequency I felt I needed them.

Hydroxo doesn't contain cyanide either, by the way.

[BLVD in reply to engels]

Thank you. Lynn

[EmJai]

Thank you for all your informative replies

I will try and answer some questions;

Gambit62: I still take Psychiatric mediaction in the from of Quetiapine (anti-pshychotic) and Citalopram (SSRI). The medication i was addicted to that i reduced and quit was Valium/Diazepam and Zopiclone, treated for anxiety and insomnia.

My Mental health has been kept in check by my meds, but i still get low moods and mood swings, albeit not quite as severe as i have unmedicated.

Mental illness is something that runs strong in my family also in varying degrees of severity.

Marre: Hidradenitis Suppurativa, here's the wiki - en.wikipedia.org/wiki/Hidra...

engels: When you say supplementt, do you mean injections or tablets? I kind of though from reading around that my Folate was a bit on the low side, it has also dropped from 5.5 in 2011 to 3.3 recently.

BLVD: I'm not sure i have macrocytosis in the clicinical term, but as Marre has stated my MCV is kind of getting to the high end in terms of normal range. I haven't had my Intristic Factor tested.

I think the big issue for me at present is trying to get my GP to take me seriously.

In 2011 my GP was great, listened to my issues, looked me over and sent me for a range of blood tests. But as soon as those blood tests came back normal, she pretty much insinuated that everything is OK physically and perhaps everything that's going on is my Mental Illness.

In 2011, My B12 was slightly lower at 279 and she was fully aware of my Family History. She just said that it should be kept an eye on just in case and that was that.

So i feel that if i approach her again after this round of blood tests, which also state that everything is normal and no action to be taken, she will just be the same and fob me off.

I don't want to get to the point my Mum and Brother did where they were severely symptomatic, with obvious macrocytosis and a B12 Level through the floor. It's mad that a lot of people have to wait until that stage before anything is done.

In regards to the active B12 test, i've read some things about it. Am i right in understanding that it can be taken at St Thomas in London?

Sadly i don't think i would be able to cope physically and mentally in getting there via public transport (although not massively far away from London) i would still have to brave the Overground and Underground. I struggled enough getting these last blood tests in local hospital via a short bus ride. Money is a big issue as well due to being unemployed at present.

They don't make it easy for you do they lol.

[BLVD in reply to EmJai]

Obviously the answer is to have your intrinsic factor tested. Another sign of B12 def. is high homocysteine. I had both tests but both came back neg. I would suspect yours would be positive, I think you have a right to demand these tests in your circumstances.

[Hidden in reply to EmJai]

Hi Emjai,

Yes St Thomas will do the Active B12, it costs £18,- , and you can have blood sample posted, so if your GP is willing (and I can not see why not with a copy of the new British Society for Haematology Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders supplied if you can), then it should not be to much of a problem (and to expensive) for you I hope. It really would be very worth while doing I think!

For info on how to get it posted perhaps contact Nutristasis Unit at St Thomas' St Thomas' Nutristasis ring: :02071886815 / 89543 - See more at: viapath.co.uk .

No they do not make it easy, but if you show you have read up, understand and are willing to pay some of the costs involved then I sure hope your GP is willing to help you further, I do believe with your family history that it is very worth while to have the active B12 test.

If active B12 is in the grey area you may need to have MMA tested which is far more expensive, but cross that bridge when you need to I'd suggest. Homocystein is not a good test for B12 def as it also can be raised in folate def, so not that precise, plus not cheap either.

Kind regards,

Marre.

[engels in reply to EmJai]

Re supplementing - if you are going to have the Active B12 test then you should not supplement with B12 as it will affect the test results. I would also not advise taking folic acid to raise your folate level at this stage as a high folate level can mask some of the symptoms of B12 deficiency while allowing neurological problems to develop undetected. Much depends on the attitude of your GP to the Active B12 test. Many seem reluctant to give the necessary referral and I have also read several cases where the GP sanctioned the test but subsequently refused to accept the results when they showed a deficiency.

In my experience, the most effective way of treating B12 deficiency is with hydroxocobalamin injections but that is difficult without the cooperation of your GP or at least someone to show you how to inject. The alternatives are cyanocobalamin injections, methylcobalamin injections, oral tablets (usually cyanocobalamin), sublingual tablets and sprays (usually methylcobalamin), nasal sprays (usually methylcobalamin) and patches (cyanocobalamin, hydroxocobalamin and methylcobalamin). Some trial and error is usually required as not everyone responds to the same form of cobalamin or delivery method. In most cases, folate can be supplemented successfully with folic acid tablets either on prescription (5mg) or over the counter (up to 800mcg). Some prefer methylfolate but this can have some nasty side effects.