B12d, FM, VitD or all three???

[Devonie]

I am finding it impossible to figure out what is going on inside me. I had blood test results in November 14 showing that my B12 level was at 1509 in ref range of 191 - 663. This was 2 weeks after a 3 x monthly B12 injection. At the same time my intrinsic factor was tested and found to be normal. Ok, so my GPs words were "you do not have PA as your intrinsic factor is normal and you have enough B12 for 3 people". I reminded him it was himself who had diagnosed by PA in 2007 and had told me then that my body wasn't absorbing B12 and I would need injections for life. I asked why then had I been put on injections and had no discussion around other forms of treatment eg diet and oral supplements. His reply was “Well I must have got it wrong”. Shocked, Angry and Confused are all understatements!!

I also had a private "Active" B12 test done at the Nutristatis Unit at St. Guys Hospital (Oct 14) and the result from that was 76 pmol/L (Ref range 25 - 108)

Ever since my PA diagnosis I have felt that the B12 injections were not providing any benefit and that I was getting worse instead of better. Eventually I was also diagnosed with Fybromyalgia in 2012. Following what has been, for me, a steady decline GP finally referred me to Endocrine clinic which at my hospital is the Chronic Fatigue Syndrome clinic (Got told it is same thing). I won't argue with that because I cannot remember the last time when I felt normal. Tiredness and exhaustion are part of my life. Anyway, Endo ordered Synacthen test (Adrenal), B12, Folate, TSH, Prolactin, Testosterone, SHBG, Magnesium and Bone Profile. My follow up appointment is 21st of this month and I will be asking for a copy of all results. The only results I have so far are the Synacthen (result normal) and Vit D. My Vit D measured at 21 and GP informs preferred level is about 70. So, I am now taking Adcal D3 Caplets (Calcium Carbonate 750mg and vitamin D3 200 i.u.) not sure what this means but am taking one in the morning and another at tea time as well as Naproxen 250 one tablet twice daily, Amytriptyline 50 mg 1 tablet once daily at night, Fluoxetine 20mg 2 tablets once daily, Aspirin 75mg 1tablet daily, Atorvastatin (high Cholosterol) 1 tablet every night and Omeprazole 20 mg 1 tablet daily. I try very hard to just get on with life but this is now interfering with work (office worker) as i am having to take time of "Sick" more frequently am generally not depressed but am I kidding myself?? GP said Fluoxetine is to help lift pain threshold of FM which is constant but I note this is also prescribed for depression. Have also been prescribed Co-Codamol as and when needed. To cap it all my husband is getting fed up with disturbed nights because of my "noises" which he seems to think is a mixture of groaning and snoring as well as the heat that comes off me (I know, I'm just a bit of hot stuff!! ). Joking aside I regularly have night sweats that render me soaking and occasionally am not sure if it is sweats or losing urine. (PJ bottoms wet but sheet ok)

I know others on this forum, Thyroid and FM forums can empathise with some parts of this but not sure if this is common with other sufferers. I would love to hear that I am not alone in this and I am not going mad???

[Gambit62 Administrator]

Your result at 1500+ after supplementation with shots doesn't mean very much - results are only really significant if they continue to show low levels of B12.

The IFA test is notoriously inaccurate and people can test several times with different results on each occasion so doesn't really rule out PA.

Not sure how long you have been on omeprazole but that is known to inhibit the uptake of B12 so could be a source of the B12 deficiciency. NSAID - which would include Naproxen - are known to have a similar effect on B12 absorption - but that would only be a factor if you started using these before you were identified as B12 deficient.

Amatriptyline and Fluoxetine and both used to treat depression and anxiety but are also both used to treat chronic pain. Fluoxetine (prozac) is an SSRI which can affect your folate levels but if they are coming back as normal then that isn't an issue. Your body needs folate as well as B12 for a lot of the processes in which B12 is used, and also needs folate to absorb B12 properly.

Vitamin D deficiency is quite common in B12 deficiency.

I found that I seemed to be going backwards on the normal treatment with B12 and only actually improved when GP told me it couldn't be B12 and refused to talk about B12 which drove me to go and find other sources of B12 and experiment to find the doses that worked for me - I mainly use nasal sprays but find I need to take around 3mg a day (shot is 1mg) and a mixture of hydroxo- and methyl as they seem to deal with different symptoms. You can't overdose on B12.

You can be driven to total distraction by attitudes of GPs.

Unfortunately, even though B12 does appear to be a factor that doesn't rule out other things.

B12 Deficiency occurs either because you don't have enough B12 in your diet (eg vegan) or because you develop a problem absorbing B12 - which is why oral supplementation isn't recommended- the mechanism for absorbing is quite specialised - particular cells in the ileum and combining with particular proteins. PA (an autoimmune response) is one possible cause of mal-absorption but others include drugs (as mentioned above), gastric surgery and even acid levels lowering in the gut as you get older.

Sometimes PA (strictly an autoimmune problem) is used as a general catch-all for B12 deficiency - which can at best be confusing.

Have you tried getting hold of copies of your records from 2007 when the 'diagnosis' was made?

you could also think about looking for another GP though there is no guarantee that the next one won't be just as bad if not worse, unfortunately.

You might find this useful in terms of a) reassuring yourself that you aren't mad or alone and b) giving you some ideas about how you could go about following things up with GP

b12deficiency.info/b12-writ...

I can't comment on the being hot stuff ... though I do find that I vary quite a lot in how many bed clothes I need in the night. Don't know if it is relevant but problems with night sweats is very common during the menopause - just from looking at your age on your profile.

[Maxfactor1 in reply to Gambit62]

Hi I was diagnosed with PA a couple of years ago and since then everything seems to have gone wrong! Not only did I have B12 def I also had folate, iron and vit D def?! Two years on I am better but still suffer from tiredness, headaches, tingling, visual disturbances ect....I also have awful nightmares which are very vivid!!

I do believe that menapause makes my symptoms worse.

[KTMac in reply to Maxfactor1]

I have B12 deficiency & I'm on 6 week injections (2nd one today after 6 injections one a week) my mouth ulcers return after about 2 weeks

I also have Zinc deficiency & I take a supplement

I also have Vit D deficiency & I take a supplement

I also have CFS & FM (CFS=mainly tired, FM=mainly in pain according to my specialist they are opposite ends of a spectrum - how I have both??) & IBS (very restricted diet)

With these I was starting to have relief from some of my symptoms (less tired, more energy, less diahorrea & more pins & needles)

I saw a neuro who said I have no significant neurological symptoms

So my GP suggested 10mg of Amatriptyline which I started on Wednesday & I am cautiously optimistic; I am sleeping better (longer & less disturbed) & I wake up feeling like I slept, my stools are better, I am cautiously able to add food into my regime. & I feel more 'normal' (whatever that is - not sure if I recognise it after 20 years) but I do have a bit of a muzzy head, some indigestion & I can't 'do' anything after 8pn when I take my tablet

[Gambit62 Administrator in reply to Maxfactor1]

Sorry to hear that the menopause has made things worse.

Other deficiencies seem to be quite common with B12 deficiency - don't think there is a definitive reason and it may just be down to a common digestive problem - which rather makes sense.

I find that hormone changes also affect my symptoms - haven't quite started on the delights of the menopause yet.

Sorry to hear about the vivid nightmares - I can imagine that is very disturbing - I was put on serataline at one point to treat depression - lasted 3 days because the dreams were so vivid - even though they weren't unpleasant - I just freaked out that I would loose my ability to distinguish reality and fantasy.

[Devonie in reply to Gambit62]

Hi Gambit- thanks for your detailed reply and sorry not been on sooner. Working full time with two computer screens means that by the time I get home I'm usually shattered and the last thing I want to do is open my laptop! I have appt with Chronic Pain clinic on Wednesday, 1st since Vit D deficiency diagnosed so hopeful of some answers am also due for a med review so I will be asking questions at both. Yes, definitely nice to know I am not going mad and am not alone. As for the sweats I have been suffering night sweats for the last 18 years and yes, I am post menopausal. I had been prescribed Clonidine for it but stopped taking them round about March last year as I was fed up and felt the meds I was on then were causing half the symptoms. These days tho it feels more like I am burning up rather than hot sweats and am on just as many meds again.

[Gambit62 Administrator in reply to Devonie]

Worked with an IT manager once who didn't even have a TV at home let alone a computer

Hope you find an answer to the night sweats.

[kontrolla]

Sorry to hear you are suffering so much. I hope things start to improve soon.

I also tested normal for the IF antibodies but really that makes no difference to the fact that I am B12 deficient and need B12 injections for life and your doctor should understand that. PA is only one cause of B12D. Also the test for IF antibodies is very inaccurate.

My vit D level was measured at 24 a few months ago when my neurologist had some blood tests taken. She asked my doctor to prescribe supplements and he prescribed 20,000 IU twice a week. You say you are on 200 IU twice a day. This is nothing like enough to raise your blood level to what it should be. I have seen research that shows that 400 IU a day has no impact on blood levels at all - it is simply not enough. The NHS advice to doctors on how much vit D to prescribe was recently increased significantly and I think it is now the 20,000 IU twice a week that my doctor prescribed. 400 IU a day is enough to stop you getting rickets but that is about all it will do.

Also there is growing evidence that getting your vit D levels up can prevent numerious diseases as shown on this graph:

grassrootshealth.net/media/...

I suggest you ask your doctor to check the current NHS advice and increase your supplements or you could source your own supplements which is what I am now doing.

I also recommend reading this book on the subject:

amazon.co.uk/gp/product/B00...

[Devonie in reply to kontrolla]

Thanks Kontrolla - i will definitely check this out before med review due next week.

[Chancery]

HI Jescamping, you really are going through the wars, aren't you? Is it just possible that you are taking too many medications? You really are taking a LOT, and most of them are fairly nasty with strong side effects. Statins are very dangerous, for example, while aspirin will effectively destroy your stomach long-term, then you are taking Omeprazole to stop that, presumably. I should think all those meds alone could be making you feel as crap as you do. No wonder you are having night sweats, you poor thing. Is it possible to thin any of them out? Why do you need a statin AND aspirin, for example? If you could perhaps lose the aspirin you could then lose the Omeprazole, which would help your B12, and rest your gut. And maybe you could lose some of the others (I'm sorry, I don't know what half of them are!), if you changed to a better medication perhaps?

I am absolutely NOT suggesting you give up essential meds, but I'm just wondering if you haven't been a victim of lazy doctoring, i.e. just handing you out more and more meds without really trying to pinpoint what's wrong. Medications cause a whole host of problems just by themselves. My illness, Trigeminal Neuralgia, needs strong anti-convulsants and just the act of taking them creates a whole new mock 'illness' all by itself. I can't begin to imagine what your horrible diet of a thousand meds is doing to you. It might be a good thing to try asking your doctor if you could sit down and review all your medications to see if you could combine/lose any.

I hope you can sort something out and get onto a more even keel. I'm only on three different medications (not counting B12!) and that's bad enough - my heart goes out to you, battling through all that. I'm amazed you're still standing!

[Devonie in reply to Chancery]

Hi Chancery - A few people have commented on the effects omeprazole has on absorption of B12 and perhaps I need to look into that more. I was put on aspirin, statins and omeprazole in 2010 after symptoms were suspected to be a TIA. An MRI showed some infarction so a lumber puncture was carried out to rule out MS. I may be wrong but am sure i read somewhere that B12 deficiency damages myelin sheath which I think in turn causes infarction?? I did stop taking statins but cholestorol shot up and had to go back on them to bring them down again. I am overweight and am addressing that - hoping in turn this will reduce some of my problems. Like everything else - dieting is such an effort You mention TGN and my heart goes out to you. I also have this diagnosis but have not had a bad "bout" for about 4 years now. My first episode was over 20 yrs ago and they can be extremely debilitating. Just hoping I don't have another bout on top of everything else. Lazy doctoring is a good way of describing how I feel, and my faith in local GP is completely gone. Gambit62 mentioned possibly finding another surgery but as he also said I may get another GP who is just as bad. Thanks for you thoughts and comments they have been really helpful

[Chancery in reply to Devonie]

Hi Jes, I am amazed to hear you have had TN. It's a rare condition and I have been desperately trying to find any connection between it and B12 deficiency. That's why I am having B12 treatment - as a long shot, but at least worth a shot. It certainly seems to help the pain, even if I'm not sure it's actually curing anything!

I know it was a long time ago that you last had it, but can you remember how long your bouts last? I use the TN forums and people talk about remission periods, but I have never had one. I've had the condition for 9 months and the pain has been with me all that time. The worst of it is managed by the drugs, of course; if it wasn't I would have jumped off a bridge by now, but it never really goes away. A remission is my secret dream. Can you remember how long your bouts last, and if there is any pattern to your remission and attack periods?

[Devonie in reply to Chancery]

Hi Chancery, sorry not been on for a while - was struggling with another flare up of Fibro and now on Stage 1 of absence management policy at work. If I have no time off sick for next 3 months I will be ok. Otherwise move to stage 2. Such is life! To answer some of your questions my first diagnosis of TN was late 1984 (omg where did all the time go!!!) My son was about 8 months old and I thought I was having dental problems, dentist said no all ok, tried to get second opinion but this frowned on in the 80's. Eventually managed to get someone to see me at a University Dental Hospital and they told me I needed to see GP. Pain had started in the Sept/Oct time with intermittent pain and eventually continuous. I saw my GP on Xmas Eve 84 and he asked me how long had I been in pain. I was at breaking point and was put onto some really strong medication that needed a second medication to keep my mood up. Think it was Carbomezapine. Anyway I was on these meds for about 6 months when I started to wean off, I lost well over a stone in weight as I could not stand anything near my mouth. All in all I would say that was my most serious bout and from onset of symptoms to completely off meds was probably just a little less than a year. I didn't have another attack until around 2004 (yes about 20 yrs) and of course as you will know it is a pain that you do not forget. I went to GP told Him TN was flaring up and he put me straight onto Gabapentin. Since then I have had another 3 bouts but get treated as soon as symptoms appear. On average I would say each bout lasting around 4-5 months. I don't think there is any set pattern of remission and flare ups, they just "happen". What I do know is that as soon as symptoms start I avoid travelling as much as possible as even the shortest car ride to my dad's (about 2.5 miles) exacerbates the symptoms.

I find it a bit odd that this is not considered along side other neuropathic pain/problems. I get a lot of pain in my legs, hips and lower back and this usually starts a few minutes after I start walking. It seems to start from my shins then calfs, knees, hips and lower back. When I have to stand for any more than a few minutes (eg washing up) My lower back starts and I am in a lot of pain within minutes. I also feel like my whole body has pins and needles when waking and GP feels this is all also neuropathic so she has added Gabapentin to my current concotion of drugs whilst waiting for yet more blood results.

I hope your TN is starting to subside, there is nothing worse than having to carry on with pain like that of TN. I always get it both sides which I have been told is unusual. I do hope you are starting to feel much better.

[Chancery in reply to Devonie]

Many, many thanks for coming back to me, Jes - you have no idea how helpful it has been to hear from you. You're the first solid connection I've had between TN and B12. I KNOW it's out there, but TN is so rare you never really encounter anyone with it, let alone someone with a B12 deficiency too. I suspect also that there are a lot of TN sufferers walking around with B12 deficiency and they just don't know it. A neurologist (or GP) would never think to test for it. It's a big part of the problem with compartmentalising illness. I actually asked my neurologist about any diseases or conditions he might know that linked B12 to TN and he just said "No", flat, end of discussion. He had never even heard of the connection, and if he hadn't looked up PubMed in front of me he'd have dismissed me as a superstitious village idiot. As it was, he just dismissed me as a time-wasting neurotic woman. Bless.

The trouble is, you, personally, have such a catalogue of disasters it's difficult to pick out what's going on, and I'm none the wiser about mine either. I've just had a restest done for coeliac disease today, plus I've had my thyroid tested. But I see you WERE diagnosed as having PA at one point and then the doc changed his mind. That means you did have low B12 assumably, at some point? Or was it something else that made him think PA?

I've never, technically, had low B12 (although I do by B12 experts' measures) , but it has proven to work for pain control in my TN when the anti-convulsants haven't been able to shift it, so as far as I'm concerned that means it plays a part, and the hell with the doc's scepticism (read, closed mind).

I wish the two of us could sit down and compare medical history and lifestyle and see where we have things in common and see if we might learn something. The trouble is, as you know, you have no idea where to start looking and doctors aren't interested in helping you sort through it - they just want to give you tablets and throw you out the door. It's just as likely that you will go off on a wild goose chase and focus on the wrong thing as the right thing, especially when you only have internet research to back it up!

Can I ask you, with your TN remission, how did you know when to lower your meds? Did you wait till all the pain went away and then start lowering them? Until I took B12 I never got pain-free. I've started lowering the drugs now, but I'm not confident it's going to work!

[Devonie]

Hi Chancery, My B12d was first diagnosed in 2006 as the red blood cells were not the right shape and size and B12 low. I was given loading dosage and 3 monthly injection. 6 months in was informed my levels were back to normal so all well and injections stopped. Within 12 months I was back at my surgery with the same symptoms all over again. After more tests my GP informed, in a rather long winded way, that I had PA. The way I got to this diagnosis was by asking him if he was saying I am "borderline" PA and his reply was very distinctive in the way he said "I am saying you have PA and need injections for Life" This tells me that IF must have returned abnormal at that time. More recently my IF returned "normal" therefore (according to GP) I "no longer have PA and he must have made a mistake"!!

With my TN once medication had kicked in, which generally takes about 4 weeks I continue on meds for at least another month then gradually start to wean down. if pain returns I increase back to full dose for a few weeks then try again. It really is a b*tch of a pain but I tend to go on the belief that if I stay on pain relief how can I know if it is getting better. Very much trial and error I'm afraid. I hope you are beginning to feel some relief.

[honor1a]

You are not alone, been through most meds on B12 every 8 weeks for PA unable to work since 2002 age now 55 was office worker also, not had the adrenal glad test don't want to go there either, I've weaned myself off all prescribed meds except B12 injections pain type slightly different but pain severity no difference, reason I came off all meds was, I felt I was taking toxins in with a likelihood off causing further health problems, my GP totally supports my decision, re your sweats, I presume you're through the menopause! you should ask for your thyroid to be tested xx

[Legion in reply to honor1a]

Further to the above, don't just accept 'normal' for your thyroid test. B12 def. and hypothyroidism often go hand in hand. Many people don't feel well even when their TSH is 'in range'. Mine was just over 3 when first tested and over 4 (and just over 'range') three months later, but my doc still said I was fine (symptoms totally irrelevant!!). After months more of no treatment/diagnosis I took matters into my own hands (thank goodness for t'internet). Without taking levothyroxine I have horrible night sweats, my vertigo worsens and I feel even more tired (as if B12d tiredness isn't enough). I'm on 50mcg now and suspect I need a bit more, but am still hoping I might get through to my doctor eventually, given that what I'm doing is helping to a degree. Still suspect I need B12 shots though as I can't get rid of the breathlessness.

[honor1a in reply to Legion]

Hi Legion,

Scary ordering thyroxine on line & taking it without doctors knowledge or supervision, should have paid for private blood tests x