I'm hoping someone could give me some advice and help me work out what's going on with me. Sorry if this turns out to be a long post.
I have low thyroid function and many food intolerances, I've also been anaemic on and off for many years. For just over a year I've had neurological symptoms including numbness and tingling in my hands, feet, legs and back, twitches in my fingers, toes and face, memory loss, brain fog (which started 5 years ago), I've also had bladder control problems, fatigue and a feeling of being 'disconnected'. I've had 2 MRI's and evoked potentials done this year which thankfully came back clear.
Over the last few months the fatigue has worsened and over the last week I have felt completely exhausted without having done anything, if I walk further than 5 minutes from my house I feel like I'm going to collapse or something. I'm weak and shaky, having a groggy heavy head and headaches. I rang my gp today and said I was concerned about my iron and b12 levels as I strongly believe they could be the cause and was told my blood levels were fine when last tested in March so he ruled b12 out but will test my ferritin level. The results of the blood test in March were:
Folate 11.5 (no range available apparently)
B12 498 (range 120 - 625) this range seems odd to me as most ranges seem to be around 200 - 900
Haemoglobin 144 (range 120 - 160)
I have read that the general blood test for B12 is unreliable. On pushing my gp he has agreed to test this again but I can't get an appointment for the test for another 2 weeks. I can't go on like I am for another 2 weeks and have ordered a B12 spray which should arrive in the next few days. If I take this before the blood test in 2 weeks would it make much difference to the test result in that short time? Does all this sound like a B12 issue? I need to get to the root of my symptoms and feel like I have no faith in doctors anymore, I ended up self medicating with NDT for my thyroid because they couldn't it right due the 'ranges', I've had to deal with my intolerances on my own because they don't seem to understand my 'extreme' case and now I feel like I'm having to deal with this on my own too!
Thanks for reading and sorry it's long but I think I needed to vent!
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pixieforest
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I forget to mention I have been taking spatone for the last few days and feel slightly better but not much yet. I also don't get any B12 from my diet as I have been a vegetarian for over 30 years and became intolerant to dairy and other animal products a year ago.
Hi pixieforest I'm not a medically trained person but I would hold off taking the B12 supplement before the test as it will definitely "skew" the result and possibly preclude you from getting treatment from your doctor.
Although your B12 and Folate appear to be "normal" your doctor should be looking at your neurological symptoms rather than at his computer screen
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosis
Treatment for B12 Deficiency guidance notes. Click on the link below then on "Management Scenario" and scroll down
Make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement".
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.
I wish you well and hope you get the treatment you need and deserve.
Hi Clivealive, thanks for replying you've been very helpful. I think I'll see if I can get an appointment tomorrow and talk this through with someone, my surgery insists on telephone consultations rather than face to face appointments which makes things difficult!
I won't take the B12 for now and see if they can bring the test forward.
Hi Pixieforest. Just a couple of quick comments...(sorry, not much time this evening)...
I note from your posts on the thyroid forum that you're self treating with NDT so...just wondering if you've had all,your thyroid levels checked recently. There are many cross-over symptoms between hypothyroid and B12 deficiency. Worth checking to make sue that your thyroid issues are under control (thyroid forum can best advise about that if you have results that you can post).
The serum B12 blood test is not a reliable marker of B12 deficiency - as clivealive says, your GP should be looking at symptoms as well. It's possible to have 'normal' or even high serum B12 levels and still have B12 deficiency.
Ask your GP to do an MMA blood test. If you have B12 deficiency, the MMA result will be raised (sorry, no time to explain this further right now - if you enter MMA blood test in the search box at the top,right of this page, the search will return other posts about the MMA blood test. Or perhaps others will spot this and leave more information for you.
Also ask your GP to do a full blood count (FBC) - fairly standard blood test, surprised if it hasn't been done - and also a full iron panel as well as the ferritin test (full iron panel gives a better picture of true iron status - ferritin is only one small part of the iron story).
Also - if anybody in your family suffers from an autoimmune condition it's mor likely (though not certain) that you will too. If this is the case, mention it to your GP and ask him to test you for pernicious anaemia, an autoimmune condition (IF antibody test - though you can still have PA if this tests negative).
Some other things to think about...because the symtpoms of B12 deficiency are also the symtpoms of many other things too - which makes it very tricky...and what you say suggests there may possibly be other things at work as well 😣...So...
If you do have autoimmune conditions in the family, also,worth asking for a full antibody panel. Again, won't identify any particular condition but if any are raised, does indicate that further investigations are necessary (these would be done via referral to a rheumatologist).
I also note that you have many food intolerances - ask you GP to consider absorption issues as cause of potential B12 deficiency (PA is not the only cause of B12 deficiency). Also - have you been tested for coeliac or crohn's disease - other causes of B12 deficiency?
Also a good idea to ask for CRP and ESR blood tests if not done. These are called inflammatory markers and if raised indicate that some kind of inflammatory process is taking place in the body. Wouldn't identify any specific condition but would indicate that further investigations are necessary. Often raised if IBS, crohn's are active - and also raised if you have another autoimmune condition that is in an active stage - so helps as a pointer to other potential underlying health conditions.
Please don't take any B12 supplements prior to seeing your GP again. This will skew any further blood tests and make it very difficult to get a diagnosis and hence any treatment you may need.
Having said all this, it's clear that you are feeling very ill, so your GP should want to investigate thoroughly...and keep investigating until he/she identifies a problem and finds a way to help you.
Good luck with your GP, hope they find some answers for you. Please post again if you need more help: lots of lovely folks here to pop in and help you.
Hi Foggyme thanks for this, lots of things to go on here.
I haven't had my thyroid checked since starting NTD so I'll ask for that as well. I'm the only one in my family with any autoimmune condition as far as we know.
I'll definitely ask for the other tests you mention as I really need to sort this out, it's not just my life but my children's lives are affected because I'm too exhausted and ill to do anything or take them anywhere.
I'll have another good read of your reply tomorrow when I can take more in.
Hi Pixieforest. Left a couple more replies to some of your replies below - more information for you.
About thyroid test - most GP's only test TSH and this alone does not give s true picture of thyroid status. Ask for TSH, FT3, FT4 and thyroid antibodies (TPO and Tg) -. It I expect the folks on the thyroid forum have already told you that 😉.
It does sound like you're struggling to get control of that thyroid 😣. Has you GP referred you to endocrinologist - the specialist who deals with thyroid issues (amongst other things). This would be the usual thing to do - if I was you I'd ask for a referral, especially in view of the problems you're having. Making this request would not be out of order and you are quite within your rights to ask for this.
Also thinking - your current GP does not seem to be serving you well (understatement). And goodness knows how they a going to best help you and get to the cause of your ill health if you can't even get a face-to-face consultation. Have you thought of changing surgeries?
Good luck and put up a new post if you need more help.
Morning Pixieforest, just wanted to say you are not alone with the way you are feeling, I am in the same position as you and I understand how hard it is to battle with the illness and then battle to get a diagnosis. Lots of good information given here some of which im going to pinch for when I go to the gp. Wishing you good luck with your gp and I hope you start to feel better soon xx
Hi Pomart. Oh dear, another GP who does not know that the IF test returns 40-60% false negative results: its possible to have a negative result and still have PA!
And whether you have PA or not is a bit of a moot point. The treatment for PA is treatment for the B12 deficiency that it causes - and there are other cause of B12 deficiency (not just PA), and the treatment for B12 deficiency (whether caused by PA or not) is...B12 injections.
Here's something that will give you more information (see point four for information about the IF test - you could show it to your GP):
Also - a link to the UKNEQAS B12 treatment alert which advises doctors to treat B12 deficiency I medicated if neurolofgical symptoms are present - even if B12 levels are within the 'normal' reference ranges:
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
If you need more information about all things B12 deficient and PA (including the guidelines for treatment that your GP should be following) then let me know and I'll post more links for you.
Good luck with your GP...post again if you need more help or advice.
If the IF antibodies come back negative, you could still have PA (the test is prone to false negative results).
If your GP treats you with B12 injections it will because a) you have a serum B12 blood test that shows you are B12 deficient and/or b) you have the symtpoms of B12 deficency which the GP is sensible enough to recognise and treat.
Or, of course, you have a positive IF result.
Your GP should not refuse treatment simply on the basis of a negative IF test - there are many other causes of B12 deficency, not just pernicious anaemia...so, you can be B12 deficient without having PA 😉
If you have the symtpoms of B12 deficency and your GP is reluctant to treat you, put up a new post and folks here can advise what to do next (if you have any test results, post them too - together with the reference ranges) - FBC, folate, serum B12 would be useful if you have those.
Morning syl123, thanks for replying and I'm sorry you're in a similar situation. I've kept a lot of this to myself for so long as friends and family don't seem to really understand what it's like so it's good to reach out to others who understand.
I hope you get some answers and start to feel better soon too x
Hi syl123. Just to to let you know...posted various bits of new information for Pixieforest and Pomart if you want to check out the replies again - might help you too 😉.
And if you're struggling to get treatment or want more information /advice specific to your issues, please put up a new post and the folks here will pop along to help.
Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test and start initial b12 treatment. This applies whether B12 is low or within range.
IFA test can help to diagnose PA (Pernicious Anaemia) but test is not always reliable and it is still possible to have PA with a negative result in IFA test (called Antibody Negative PA).
"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).
"Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)
Other B12 info
1) Pinned posts on this forum. I found it helpful to read fbirder 's summary of B12 documents. Link to summary in third pinned post.
2) BMJ B12 article
Emphasises the need to treat people who are symptomatic for B12 deficiency even if there is no obvious deficiency in blood results.
This is great thanks. I'll have a good look through those links. I was thinking of emailing my gp as it's so difficult to get an appointment, and outlining the tests everyone has mentioned here and also the guidelines on starting treatment when someone has symptoms even though their blood test is in normal range.
Here's a link to the UKNEQAS B12 treatment alert that instructs doctors to treat for B12 deficiency if neurological symtpoms are present - even if serum B12 levels are with 'normal' limits (to present potentially irreversible neurological damage):
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)
Worth printing and showing to your GP - many are not aware of this - nor the fact that where neurological symtpoms are present, six loading doses should be followed by every other day injections until no further improvement - sometimes for many months.
And here's another link to information about some of the strange misconceptions that GP's often have about B12 deficiency, it's testing and treatment. Well worth a read - you'll be able to recognise when your GP is talking nonsense - and perhaps share a printed version (ask for it to be included in your patient records to 'evidence' and support any B12 treatment request 😉.)
Hi Pixieforest. Sorry things went badly with your GP.
I've had a look at the new post you've put up and can't really add much to,what has been said there.
Agree with what others say about writing to your GP and including evidence to support the things you say. A letter becomes part of your medical records so GP has to read what you include.
Also think - along with those who have commented - that the best way to determine whether you have a B12 deficiency or not is to get an MMA blood test (this will be raised if you have a B12 deficiency).
Sorry I forgot to say yes I'm in the UK. I did the health check yesterday on the b12d.org website you gave a link to and scored 10 - severe deficiency with neurological.
I ticked all my symptoms on the PAS Symptoms Checklist and gave a copy to my GPs. Link to PAS checklist in post above.
I also gave my GPs a copy of Martyn Hooper's book (mentioned in post above) and a copy of the BSH Cobalamin and Folate Guidelines. Not all GPs are receptive to being given lots of info though.
My personal preference when writing to GPs is for letters.
My understanding is that in UK, letters to GP are filed with medical records so are a record of issues raised. I always keep my own copies of any letters written. I'm not sure if copies of e-mails are filed in the same way.
You mention neurological symptoms. Time is of the essence if B12 deficiency is suspected as untreated or inadequately treated B12 deficiency may lead to permanent neurological problems.
Have you seen a neurologist?
Have you considered contacting PAS (Pernicious Anaemia Society)?
B12 blogs
There may be stories on these blogs that are relevant to you.
"Living with Pernicious Anaemia and Vitamin B12 deficiency"
Although a vegetarian diet is a risk factor for B12 deficiency, it's possible for someone to have more than one cause of B12 deficiency at the same time.
I'm just writing a letter to my gp now, I will email it to him and also send a printed copy for my records. As I'm writing it I'm wondering how all the links and information I've provided will be taken, I've just changed to a new gp and don't want to get off to a bad start! However I also need something done about my health!
I have seen a neurologist who has been very thorough and all tests are clear, he did say there is some wear and tear on my spine bit it wouldn't be causing my symptoms.
I'll have a look at the checklist and send a copy of that with the letter.
My experience has been that some Gps are receptive to letters but I did find it irritated one of my GPs.
I think it's a balancing act between risking upsetting a GP against the potential need for treatment.
To my mind, ensuring good health should be a partnership between GP and patient and a good GP should be willing to listen and to read information of potential benefit to patients.
When I've written letters in the past, I've tried to keep them as brief and polite as possible.
I'm going to take a chance with the letter I've written and hope for the best. Although I'm losing faith in them all the time. I've just rung the surgery to try and move the blood test appointment forward as I feel really bad today I can't go outside the house I feel so awful. (You can't get an appointment at my surgery unless it's an emegency, so you have to have telephone consultations which i had yesterday with my gp), a snooty receptionist just said to me if the doctor thought I was that ill he would have put it down as urgent, so I told her the doctor can't see how ill I am over the telephone! I'm so upset, as if feeling this bad isn't enough I don't need to be spoken to like that by a receptionist!
Sorry I've gone off track..... I'very kept my letter as brief and to the point as possible and polite. Thanks for all your help.
i am not a doc, I am an INTP personality type, and finding solutions is my hobby and my passion as well.
You get your b12 checked again, seems there is something wrong with your test. You are right b12 tests are unreliable ways to deduct serum b12. You can find some videos on youtube how to get real b12 test done. In any case you can take a b12 shot and see if that helps, 2-3 shots each 500 or 1000 micrograms wont harm anyone.
Now the important stuff, your problems are with nerves mainly and usually nerves are directly connected to stomach problems, even b12. So i am recommending you to eat chicory leaves (not root). Add chicory to your diet only one leaf per meal should be great. Do it for 1 week, it will restore your bacteria in gut and stomach and make life easy.
once that is achieved your problems 70 percent will be gone, rest 30 you can manage with your gp.
Thanks I'll look into how chicory can help. I'm also looking into kefir grains for restoring gut bacteria, although I can't have dairy I've read you can eat the grains themselves so I might try that.
sorry for that thyroid comment, you didnt mention anything with thyroid ...
please take chicory for a week or so and let me know, Kefir is good but it is not what you need, you can use kefir once your habitat is established in large intestine.
And also if you eat sugar, stop eating sugar, sugar degenerates nerves. If you smoke stop smoking as well, smoking is very bad for nerves. If you wacth porn stop watching porn as well, it runs havoc to your brain and hence nerves. You may or may not stop srinking tea / coffee although bith are stimulants hence bad for health on daily basis.
Now what you will replace these with, you will eat more protein diet, less carbs. You will drink milk in morning, add egg if you like is better boiled agg. You will exercise daily atleast 50 squats per day whether you like or dont. You will drink as much water. And eat lots of friuits which your heart desires.
Last but not the least you will stop medication doc has given you temporarily while you go on chicory for a 2 week thing. Also add garlic, ginger and green onions to your diet.
Now this is hard i believe, but if you love your self you must do it.
Pixie forest .. going through the list of your symptoms i have an intuition you have a liver problem most probably ALSO. Please get it checked at well i suggest
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Veggie since 11 years old , have symptoms of B12 deficiency, yet levels are normal.
Normal B12 levels?
What level is normal after B12 injections
B12 levels- low or normal?
