Should I get further testing ?

Hi everyone I got some tests done to check my B12 , thyroid etc and these are the some of the results .I thought the B12 was ok but now see advice that if under 500 should be supplemented I have had numerous symptons over the years, memory terrible, brain fog, confusion, Thyroid is struggling going towards Hypo and several others on PAS symptoms list also am I right in thinking even if BT12 was ok I can still have Pernicious anaemia ? Can you advise should I get other tests done? Or am I OK Here is some.

Vitamin B12. 368.6........ Ranges pg/ml 191.000 - 663.000

Folate (Serum) 6.04........... ug/L 4.600 - 18.700

25OH Vitamin D 7.81..........nmol/L 50.000 - 200.00

Ferritin 57.45................ug/L 13.000-150.000

CRP - High Sensitivity 7.4......mg/L 0.000 - 5.000

Ferritin 57.45..........ug/L 13.000 - 150.000

Thank you.

14 Replies

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  • Hi, I won't comment on all your results ad I'm not knowledgeable , however your vitamin D is dreadfully low, you must feel really ill. Hopefully someone will be along soon to advise you properly

    Looking at those results I'd guess you feel awful

    Lu x

  • Thank you Lulu_65 I can not remember the last time I ever felt well,seems like I have been tired and ill since I was about 20yrs old. I posted my results over on the Thyroid thread and I can not at the moment get appointment with the doctor I want to see.

  • Your VitD is VERY LOW. What did your GP prescribe ? Needs to be nearer 100.

    B12 also very low. Of course some people can function with lower levels but do remember only about 20% of that result is available to be utilised at a cellular level where it is needed.

    Ferritin also needs to be around mid-range.

    You mentioned Thyroid tests - cannot see any results.

    To confirm PA you would need testing for anti-bodies to IF and PC.

    I would suggest you are needing loading doses for VitD.

    I am not a Medic - just a Hashi's gal with a B12 issue 😊

  • Hi Marz Functioning is definitely not a word that describes me. :) I haven't got to see the Gp I want to see yet so on nothing yet. Other results are,

    TSH 7.13............................mIU/L 0.270 - 4.200

    Free Thyroxine 13.19.............................pmoI/L 12.000-22.000

    Total Thyroxine 105.3...........................mnoI/L 59.000-154.000

    Free T3 5.09 .............................pmoI/L 3.100 - 6.800

    Antibodies

    Thyroglobulin Antibody 18.110...........IU/mL 0.000 - 115.000

    Thyroid peroxidase antibodies 9.8 .............IU/ml 0.000 - 34.000

    CRP- High Sensitivity 7.4................mg/L 0.000 - 5.000

    So Hashi's ruled out even though my daughter was diagnosed with having a low thyroid before she was 1 year old that's 21 years ago!

    Appreciate the heads up about getting tested I'd still be none the wiser if I hadn't joined Thyroid Uk, if I can not see the doctor I want to see I will be moving Gp surgery sooner rather than later.

  • Your TSH is OVER the top of the range - so you need treatment asap. The FT4 is also low - just above range. So in spite of the Pituitary Gland pumping out Thyroid Stimulating Hormone your thyroid is unable to produce sufficient T4. Strangely enough the Free T3 is reasonable - which does confuse me :-)

    Once you have started T4 treatment you will need to be re-tested and to have your dose adjusted after around 6 weeks.

    As your Anti-bodies are low then it would seem you do not have Hashimotos.

    I would insist on the treatments that others have suggested as so many things can go wrong with Low B12 and Low VitD.

    It's a lot for you to take on board - so take it slowly and hopefully you will soon feel stronger.

  • Thank you Marz seem to have a bit of a virus at the moment feelling a little better tonight. Sent a e-mail of to the Patient and Client Council hope that they will give me some support, I know they will hopefully write me a letter requesting that I have copies of my medical records and that should make my GPs surgery sit up and deliver :) .

  • You are entitled to have copies of your test results - they are legally yours. The only charge should be for paper and printing - some surgeries do not charge.

    nhs.uk/chq/pages/1309.aspx?...

    Here in Crete we have to keep all our own records :-)

    Hope you soon feel stronger and let us know how things go for you. Am not familiar with the Patient and Client Council you mentioned.

  • Hi Tobie. Your B12 level is in what's called the grey area - you are not classed as deficient but some people do suffer symptoms of B12 deficiency at that level. But please note, it's important at this stage that you do not take any B12 supplements (more on that later).

    I see that you've posted thyroid result on the thyroid forum so I'll leave the folks there to comment fully on them. However, your TSH is high, so something is going on thyroid wise.

    And this is where it gets difficult: there are a lot of cross-over symptoms between B12 deficiency and thyroid conditions and it's often quite difficult to tell which condition is causing which symptoms. Your current symptoms could be due to either condition, or a mixture of both!

    However, as you do have symptoms that could be down to B12 deficiency your GP should act in accordance with the guidelines and treat you with B12 injections (see NEQAS guidelines, second PAS pinned post - as discussed below). The golden rule is always treat the symptoms, not the blood results. Your GP may not know this.

    So first...I see you had these blood taken privately. I suggest you take them along to your GP, for further discussion, as follows:

    If you want to be tested for pernicious anaemia, ask your GP to test anti-IF factor (this is only accurate 50% of the time and you can have PA even if it tests negative). Your GP will probably want to re-test your serum B12. You should also ask for MMA and homocysteine (one or both will be high if you have B12 deficiency). I note that you have been advised elsewhere to supplement with B12 - don't - at least until your blood tests have been completed (by your GP and possibly a consultant, if referred). If you raise your B12 level through supplementation before testing, you will never get a B12 deficiency diagnosis, and that's going to be difficult enough with a result already in the grey area. Your GP should also do a FBC.

    Your CRP (c-relative protein) is raised - this is a marker of inflammation, infection, autoimmune disease, or some other long-term disease. It is non-specific in nature so your GP will want to investigate further to see what is going on (something is).

    Your vitamin D is extremely low - your GP will want to (most certainly should) prescribe for this and keep a check on your levels until they rise.

    Your ferritin is nearly ok - it could do with being a bit higher - between 80 - 100.

    Your folate is a little on the low side (it could do,with being in the top third of the reference range. But this is important - do not supplement with folate until your B12 issues are sorted out. Taking folate without first addressing a low or deficient B12 status can cause neurological damage.

    If you read the PAS pinned posts to the right of this page when you log on, this will give you more information about B12 deficiency and pernicious anaemia. GP's are notoriously ill-informed about these conditions and many here find that the only way to deal with that is to educate themselves so that they can help their GP's to help them. Some GP's can become quite hostile so be prepared for that and stand your ground.

    So...I suggest you read the pinned posts and take yourself and your results along to your GP. I think you may have to be persuasive to get treatment for B12 deficiency. All the guidelines state that you should be treated with B12 injections - you may have to take the guidelines with you and show them to your GP. Most certainly, don't let you GP give you folate without also giving you B12 injections - injections should commence 24 hours before you take any folate.

    i'm really sorry that you've been ill for so long. We hear that so often here so there are plenty of people who will understand and be here to offer advice and support as and when needed.

    Very good luck with your GP...please post again and ask for help if he refuses treatment..

    Take care 😀

  • Hi Foggyme I am so tired at the moment, I read everything and reread so hard to remember what I've read so I make notes and print off somethings, so forgetful. I will try and get the Vit D sorted out with one of the GPs unfortunately Dr C the one I had been seeing at the practice seems intent on proving I'm well. I wrote to the practice manager re seeing my medical notes and got a letter two weeks later with less than a days notice to see them for 10 mins! I was done after about five anyway when the tiredness and confusion set in ! Again thought I would be capable and couldn't hack it totally unprepared ! What I do remember is that by going to locums I had Thyroid tests done from June about 4/5 blood tests and TSH was high, one mentioned risk of Hypo. However the last test was seen by Dr C and as the clerk was pointing out TSH normal, LFT GGT which has not been below 98 now within normal range think it was 42, CRP Normal, I'm at a loss as to what's going on . Clerk also went back to see how far blood tests went back on computer and noticed that blood tests from the year 2011 are missing, she said they might be in my paper file but she could not see why. I have my own idea and feel shattered. Next step is to request copies of blood results. The practice manager said a couple of times how busy they were and the clerk kept trying to put me off applying for them but I am determined if weary. I will not be taking Folate or anything else, first I think as you say get Vit D sorted out also want to try and stop the Gabapentine with advice of doctor so I'm not getting side effects scared as I do suffer from neuropathic pain however feel that it need to be done. Thank you for the advice, do not know what I would do if it was n't for the support of the people in HealthUnlocked. xx

  • Hi Tobie. Oh dear...I really don't know why they have to behave like this! It's your absolute right to have a copy of your medical records so please don't think that it's you being unreasonable.

    Any luck with the B12 injections? They certainly should be treating you, all the guidelines say this, as do your symptoms. It would make such a difference to you and certainly won't do you any harm.

    All here will know how very hard it is to stand up to doctors, especially when feeling so ill. I know only to well the feeling of sitting in a doctor's office and being shouted down before even finishing my sentences 😖.

    Have you got anybody who would be prepared to read your information, get some knowledge about B12 deficiency, and go to the doctors with you, for support. GP's are often less dismissive and more attentive when there's a witness in the room. Sad, but true.

    Really hope that you manage to get them to act soon.

    Or have your thought about changing your GP surgery - though there's no guarantee that a new GP would be any better. Only a vague hope.

    Take care and please let us all know how you get on.

  • I would follow up on the vitD first as that is definitely out of range and needs addressing.

    Once that has been dealt with it should be easier to evaluate the B12 position - which may come down to looking at your symptoms - as much as the test results.

    Other tests to look at would be

    -full blood count (for any signs of macrocytosis - though this is only a symptom of a B12 deficiency - not a defining characteristic

    - MMA and homocysteine can help to clarify if there is a B12 deficiency when results are in the grey range - both look at waste products that will build up if there isn't enough B12 available to run the processes that recycle them - homocysteine will also be affected by folate deficiency and your folate isn't great.

    IFA looks for one specific absorption problem that will cause a B12 deficiency - PA. The symptoms of PA are the symptoms of the B12 deficiency it causes - so you can be B12 deficient as a result of absorption problems without having PA.

    The IFA test is also prone to give false negatives about 50% of the time so a negative result doesn't rule out PA as the cause of a B12 deficiency.

  • Looking at past history Tobie, I'm horrified that, with the neurological symptoms you describe - weak legs: asthma, Myelopathy, spastic paraparesis, Functional Neurology Disorder , neuropathic pain, memory loss, fatigue/tiredness Spasms, Jerks, tremors, Paresthesia and humming in ears - you have not been diagnosed or treated for B12 deficiency before now, as there is a short window of opportunity before neurological symptoms may become permanent.

    In many European countries and Japan, your B12 would be treated if below 500, (deficiencies can begin to appear in the cerebral spinal fluid below 550 pg/ml.)

    Nevertheless, your symptoms indicate B12 deficiency and should be treated urgently with B12 injections '1000μg intramuscularly every other day until no further improvement' as per the BNF/BCSH guidelines. This latest BMJ research document also recommends treating on symptoms without delay as you will see from the summary there is, in fact, no reliable test:

    BMJ Research document:

    cmim.org/pdf2014/funcion.ph...

    More excellent links:

    b12deficiency.info/b12-writ...

    stichtingb12tekort.nl/surve...

    "Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately"

    ...........

    As others have already said, vitamin D levels are also extremely low and need to be addressed urgently too:

    amazon.co.uk/Oxford-Vitalit...

    The K2 is important as it ensures vitamin D3 goes to the bones and not the arteries:

    ..............

    High TSH would also aggravate all symptoms, and many people only feel well with a much lower or suppressed TSH. If you haven't already read it, 'Understanding Thyroid Disorders', written by Dr A. Toft, gives good advice and it is published in association with the BMA :

    "Typical results would be a fT of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l. In some patients, a sense of well being is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/1 and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."

    ..........

    Finally, many researchers believe leaky gut/intestinal disease is the source of autoimmune disease and I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/B12 problems.

    I hope you receive all the treatment you need to feel better soon.

  • Hi, just read ur blog about ur b12, I was told just recently that my b12 went upto 314. My Gp then told me to stop my b12 tablets as I'm no long b12 deficient. Still feeling awful, tummy troubles, numbness of feet and arm etc. So bloody forgetful, struggling to get my words out sometimes. After reading it, if I can get Gp appointment will go back? What do you think? Would be grateful for feedback.

    Tea123 😊

  • I can imagine the outcry if diabetics went back to their doctors to hear them say - "Well, your blood sugar is fine now, so we'll stop your medication".

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