Doctor won't help - can you advise

Hi all,

Am hoping someone can advise/help me. I am at my wit's end. I've been experiencing problems with my memory, fatigue, foggy head, brittle nails, tingling hands etc for years, but everything worse since last April - to the point where my concentration, memory and energy have declined rapidly.

I had a full raft of tests done after i had spoken with various people and a couple of people indicated it could be b12 deficiency. My tests came back as 234ng/l for serum vitamin b12 and 84 ug/l for serum Ferritin. Obviously as these are in the normal range for the UK, i was advised there is no problem with my b12 levels.

I am convinced that some further investigation into this would help, but rather than them listen to me, i was refferred to a CFS facility. I went there yesterday and due to being quite distressed - understanding i think waiting ages for a referral, having very little energy and a declining memory at 33, the person who saw me had made their mind up about me as i started speaking. I have had problems with my sleep and anxiety in the past, and i am now understandly depressed through the fact i feel noone is listening to me, and my memory and energy continue to decline - so cried when i met with the specialist - who turned out to be a psychiratrist... He did not look at any of the forms i had filled in and picked at my sadness saying i was clearly depressed - looking at this as the cause and not the effect. I was having issues way before this low mood - but he decidd there and then this was the root cause, which distressed me further.

He told me that my levels were normal and there was no point in me exploring other areas and wasting my time and money on things that would probably yield no results - telling me that i need to be patient and that anti-depressants and physio were the answer. Whilst i am not adverse to taking anti depressants, i truly do not believe this would be treating the cause and left the place feeling trapped by this specialist and my GP. It's important to mention i had depression when i was 18 - and i know what that feels like - i have a great life, but the way i am feeling has brought me down.

I have private medical insurance and so as my GP and this specialist are not willing to help, i want to try and take this on and see a b12 specialist to at least rule out any problem here - can that really hurt? I just want an answer and not more years of waiting and being condemned to being in the system as an anxious person who has created these symptoms.

I need help with how to go about this - i need to find a specialist who would be able to help, as then i would need a GP referral. If i have a name and someone who will agree to see me, my insurance will cover it if my GP at least writes a letter - but i need to find someone, and then i need their co-operation with the referral - which i am also scared will be a problem.

Can anyone help me with this? Has anyone been in this situation and knows the best course of action? please help x

22 Replies

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  • My serum folate was 8.5 too in case that helps. x

  • Hi Lazarus1983 you don't give the ranges <from - to> of your blood tests but even so you are probably in the "grey zone" for B12.

    On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

    However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

    At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml.

    The book is well worth while the purchase as is Martyn Cooper's "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency" both available via Amazon - and no, I'm not on commission :)

    You could also join The Pernicious Anaemia Society - it costs just £20 for a year's membership and their staff will be able to advise you and answer your questions.

    I wish you well

  • Thank you for this, and your comments. The range was 200-1000.00ng/l if that makes sense?

    I have joint the society today so will field questions to them too. It's more who i can maybe get referred to and how to tackle it as i know i won't get any help from the NHS now, other than a potential referral to a private doctor that my insurance will hopefully cover.

    Thanks

  • Well on a scale of 200-1000.00ng/l 234 is way down near the bottom.

    Here is a list of typical B12 Deficiency Symptoms

    Symptoms tend to develop slowly and may not be recognized 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

    Diarrhea

    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

    Do you "see yourself" with any more of the above other than those you have mentioned?

  • Am wondering if you have been correctly tested for your thyroid - TSH - FT4 - FT3 - Anti-TPO and Anti-Tg. Often LOW B12 can go hand in hand with low thyroid function and many symptoms overlap. When Hypo - it is better to have B12 towards the top of the range - bearing in mind that only about 20% of your result can reach the cells where it is needed. That makes your result even lower. The range in Japan starts at 500 - ummmm :-)

    They are far too quick to jump for the prescription pad and give you anti-depressants without ruling out other root causes. Maybe your VitD is low - as is often the case during long dark winters .... along with the other basics mentioned above.

  • Hi Marz, I used to have an underactive thyroid which I took thyroxine for. They then stopped treating me over 4 years ago - as levels normal. They say normal on my test results too but all combined i am sure this is what is making me feel so tired, have the memory problems and my overall mood.

    I'm just distressed in the sense i have no idea what to do now/who i can contact as a specialist to help to at least rule out anything like b12

    Then these signs of distress are what they are taking notice of, and nothing else.

    Thanks for your response.

  • I am not sure why your GP stopped your Thyroid treatment. Do you have the results with ranges from that time ? Always a good idea to request copies of your test results so you are able to monitor your own progress. You are legally entitled to them under the Data Protection Act. Normal is an opinion and not a result. Docs usually mean the result is in range when they say * normal * - but where you are in the range is key. Of course your results would have fallen within range as you were receiving treatment.

    If you prefer you can obtain a Home Testing Kit from Blue Horizon - go for the FULL Thyroid Profile and the VitD - Ferritin - Folate - B12. ( albeit if you are supplementing B12 then the result will be skewed )

    thyroiduk.org.uk/tuk/testin...

    On the above link you will also see a link to signs and symptoms - you can tick the relevant boxes to help you on your journey. Lots of other good Thyroid Info too.

    b12deficiency.info/signs-an...

    The above link takes you to lots of good information on B12 deficiency too - starting with the signs and symptoms.

    There are excellent Pinned Posts on this forum explaining the detail of B12D/PA.

    Maybe pop across to the Thyroid UK Forum here on HU and have a read. Lots of stories of people struggling to obtain the correct testing and then finding Docs rarely understand the results correctly......

    so many good people around to help and support you so keep asking questions and reading :-)

  • Hi, in my opinion the easiest way to rule out B12 is to have a few shots, and see if you notice any considerable difference in your symptoms. This is what I did, haven't looked back since I started. I'm sick of GPs wasting my time. My b12 was 190, and been around to see heart specialists, etc, till one mentioned B12. Being desperate, jumped on Google, had my first few shots within a week, and a page long symptoms (similar to yours) have disappeared within days!! Like a curse had lifted! I have no memory problems any more, have normal energy levels, no dizziness, no depression, no racing heart, no panic attacks... Should I continue?

    I know it doesn't work for everyone, it did for me. I now self inject once a month, and carry on with life!

    I might add, I live in Australia, where I can buy the injections from the pharmacy without prescription, though GPs don't want you to know that! :)

    I'll send you a box of three ampoules if you wanna try it. It saved my life! (Literally!) It should not be as hard to obtain this life saving vitamin, as it is in some parts of the world! You can't overdose on it, it is water soluble! Your body only absorbs as much as it needs!

    By the way, I was also a bit low on vitD. I take a tablet of that too whenever I remember!

    Let me know if I can help! The above book, "Could it be B12?" is excellent, I've read it, and is spot on! Highly recommend it too!

  • Self injecting since aug 2014!

  • How about posting your county or area. I had similar problems of lack of correct treatment from my NHS GP's, and posted my county. One of the members (bless you) came up with a wonderful private GP actually in my town.

  • My G.P. was exactly the same. I had all the symptoms of B12 deficiency, so asked for a test. Mine came back at 250 and I was told to go away, it's all in your head, you're stressed and depressed, you aren't deficient! I got angry at that point and basically bullied my G.P. into taking an Intrinsic Factor and Parietal Cell blood test. They told me it was a waste of time because my serum B12 was normal, and I wasn't anemic. They finally did the tests, which both came back positive - I have P.A.

    Go with how you feel, not by what the numbers on a bit of paper say. Badger your G.P. for the extra tests or pay to get them done privately somewhere. At the end of the day, your health is the most important thing and you need to get to the bottom of why you feel bad. Good luck and I hope that you feel better soon.

  • Thank you both! topazrat and beginner1 I think i'm going to have to go down the private route or a different GP because they have referred me to CFS service where the psychiratrist has just decided that the low mood i am feeling is the be all and end all of it - when as i keep saying - it's a result, it really, really is.

    i love in London - Clapton/Stoke Newington so yes if anyone knows of a helpful GP that would be great.

  • Hi Lazarus,

    UK B12 documents make it clear that someone who is symptomatic for B12 deficiency should be treated even if b12 blood levels are within range.

  • pernicious-anaemia-society.... click on symptoms checklist

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    see following

    1) BSH Cobalamin and Folate guidelines. Has your GP seen these guidelines, I gave my GP a copy. Details of UK b12 treatment can be found a quarter through document.

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" which should be on page 3 or put "cobalamin and folate guidelines" in search box.

    Link to flowchart in BSH Cobalamin guidelines that outlines recommended UK diagnostic process for B12 deficiency and PA ,mentions when to order an IFA (intrinsic Factor Antibody) test which can help to diagnose PA (Pernicious Anaemia).

    stichtingb12tekort.nl/weten...

    2) BMJ B12 article. See 5th summary point.

    bmj.com/content/349/bmj.g5226

    3) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS. The book is up to date with UK guidelines. I gave a copy to my GPs.

    4) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart. very comprehensive book about B12 deficiency.

    5) Pinned posts on this forum. I found the summary Of b12 documents fbirder compiled very useful. Link to his summary in third pinned post (last link in list)

    6) PAS website

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    7) B12 deficiency info website

    b12deficiency.info/

    8) b12d.org

    Another UK b12 website

    b12d.org/

    9) if you have time, it might help to read through other people's posts.

    I know what it is like to spend years suffering from symtoms typical of b12 deficiency with no-one paying attention. I know what it is like to feel scared because your body is deteriorating. In the end I felt forced to self treat but saw this as an absolute last resort after failing to get NHS treatment.

    I am not a medic.

  • Thank you so much, i will read through these and print these all out tonight. I think its so bad that they make people feel crazy and would rather hand out various tablets then actually look at the causes and things that COULD help

  • I think in UK, that a person diagnosed with PA or B12 deficiency who has neurological symptoms is supposed to be referred to a haematologist but sadly this does not always happen.

    Neurological symptoms can have many causes other than B12 deficiency so I think it makes sense to refer someone with neuro symptoms to a neurologist. However it's pot luck as to whether you get a neurologist who fully understands B12 deficiency.

    Rheumatologists, endocrinologists, gastro-enterologists, podiatrists, dentists and other specialists can all have a role in picking up signs of B12 deficiency because B12 deficiency affects so many body systems. My experience was very few of the "ologists" I saw had a full understanding of b12 deficiency even though I raised the possibility of B12 deficiency with all of them. I had to push hard to get referrals to all the specialists I saw. I got worn out and felt I was doing the GPs' job for them.

    See BNF (British National formulary) Chapter 9 section 1.2

    UK GPs will have access to the BNF, either a copy on their bookshelf or online access.

    evidence.nhs.uk/formulary/b...

    Some people on this forum join the PAS.

    pernicious-anaemia-society....

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    citizensadvice.org.uk/healt...

    HDA Patient Care Trust

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

    hdapatientcaretrust.com/

  • am i right in thinking the specialist i would need to go to is a haemotologist or would it be a neurologist if i did try and go private? sorry for another question

  • Hi,

    You symptoms are like that of a lot of conditions that have similar symptoms, in my case I had both B12 deficiency and a Parathyroid adenoma I had a huge battle to get a diagnosis and had many incorrect diagnosis before one blood test lead me on a long road to eventually finding the Norman Parathyroid Centre parathyroid.com/Dr.Norman.htm I had an adenoma removed and my life was changed overnight. I would suggest having your calcium and parathyroid levels checked. Of course it could be many other things but it is worth a try.

    Good luck!

  • You are absolutely right not to accept this diagnosis of sadness and depression.

    This is a physical illness and needs to be diagnosed and treated as such.

    I know from a relative's experience, and to some extent my own, that a life of utter misery and decline will follow for you and all around you if you go down the route of anti depressants and counselling for years when your symptoms are actually being caused by a physical illness/illnesses.

    In itself, being told you are sad and depressed, or stressed, when you are actually physically ill can cause someone to doubt their sanity. It is a form of gas-lighting. Lives are being ruined by this attitude on the part of some of the medical profession.

  • Am still puzzled as to why your thyroid treatment was stopped. Do try and obtain copies of your results for thyroid. Low mood is linked to low thyroid ...

  • Like Marz I'm extremely dubious about the fact that your thyroid treatment was stopped. People's thyroids generally don't just get better. If you have autoimmune thyroid disease (also known as Hashimoto's Thyroiditis) then thyroid function test results can fluctuate quite dramatically.

    I think you desperately need to get some blood tests done. And you can do that without involving an insurance company or a doctor if you are prepared to pay.

    bluehorizonmedicals.co.uk/T...

    If you pay for the above test you can get tested with a finger prick test (a microtainer test). (There are other options but most of us find the finger prick test the easiest.) You order the test for £99, a kit is sent to you through the post. The kit is described here :

    bluehorizonmedicals.co.uk/W...

    Do the test before 9am, preferably about 8am if you can, on a Monday, Tuesday or Wednesday. Package up your blood sample immediately. Take the package to the Post Office without delay and pay for "Guaranteed Next Day Delivery By 1PM". Results are sent to you via email.

    Once you have your results you should post them, (including the reference ranges) on the Thyroid UK community and ask for feedback. And obviously you can post them on the PA Soc forum here as well.

    healthunlocked.com/thyroiduk

  • I just have to say what excellent advice all these posts advise. Hard to believe that all are not Doctors or specialists as everyone actually sounds a lot more knowledgeable. Take note of these experts and you will get there as best as you can be for you and your health.....good luck and keep your fighting spirits up.

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