I am new and desperate for help!

Hello Everone, I am 62 yo female vegetarian of 30 yrs.

I have hashimoto thyrtoxosis diagnosed 20trs ago, i have fibrous dysplasia in c2 spine R ulna and humerus. I also have long qt syndrome and gerd. I have been lurking on ther HU forums for about a year now, and managed to open 2 accounts miglet54 amd mumzie54, profile on the mumzie account. These are my recent BH bloodtests. Unable to upload so typed. I am on 100 thyroxine for 12 years and 25 for the previous 8. I had loading b12 jabs 8yrs ago, GP then retired and new one said I didnt need anymore now.I used to take Omeprazole and other ppi 40 daily for 30 years, stopped now as its on the list of drugs to avoid with long qt. I would really appreciate your help as I suffer from all the symptoms less one on the list. I have had help from @jazzw on the TUK forum.

CRP 4 <5

FERRITIN 24.1 (20-150)

TSH 9.88 (0.27-4.20)H

T4 TOTAL 80.1(64.5-142.0)

FREE T4 11.85 l (12-22) L

FREE T3 4.82 (3.1-6.8)

ANTITHYROISPEROXIDASE ABS 103.5 <34 H

ANTITHROGLOBULIN ABS 187.2 <115 H

VITAMIN D (25OH) 59 INSUFFICIENTN25-50

VITAMIN B12 152 <140-250) INSUFFICIENT L

SERUM FOLIATE 14,41 )8.83-60.8)

38 Replies

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  • Hi miglet54 as I understand it Vitamins B12 and D are derived naturally from eating animal products (unless you can sit in the sun for twenty minutes a day for your D) so maybe you are not getting enough from your diet. Your Folate level is not high despite your diet so if you start supplementing B12 you may need to keep an eye on your Folate level as this gets used up processing the B12.

    I am not a medically trained person but I think you should ask your doctor to recommence B12 injections until there is no further improvement and prescribe Vitamin D3 - both probably ongoing.

    I wish you well.

  • As I understand, the amount of vitamin D in most foods (other than those which have been specially treated or had it added) is too low to maintain decent levels. Perhaps if we were eating only animal produce that was raised entirely outdoors? I really don't know.

  • You may well be right helvella - I'm permanently on D3 supplements but then I'm 75, not vegetarian and no amount of sunshine will help.

  • Thank you so much.

  • Your B12 is definitely low . As you are a vegetarian , it could be to do with diet . If you eat neither meat or fish , your source of dietary B12 would be milk, butter cheese, eggs and any of the cereals which are fortified with B12. Omeprazole will have totally nullified your stomach acid which you need to absorb vitamins and minerals . Have you been tested for PA? (Intrinsic Factor test ) it is unfortunately unreliable . You can test negative , but still have PA . Whatever - with such a low B12 serum reading and your symptoms , you need loading dose injections of B12 . I'm surprised that your GP hasn't suggested this . You definitely need to supplement with folate/folic acid also.

    As regards Gerd, it can be caused by low stomach acid . The oesophageal sphincter closes when the stomach acid is normal ,to guard against reflux . When acid is low (PA patients have this ) the sphincter doesn't get the message and does not close properly . Reflux occurs, and even low acid can cause burning. Low acid will result in stomach flora unbalance , and vitamins and minerals being mal-absorbed . Probiotics can help to re-establish healthy stomach flora . Raw organic sauerkraut - never heated - can help enormously , and other probiotics .

    But for a start get a loading of B12 injections , with plenty of folate / folic acid . That will be a start . Best wishes to you .

  • Thankyou, I will make an appointment in the morning. The last time I saw GP it was for my memory, I felt like I was losing my mind. She has done the dementia tests twice, on a double appointment which I can tell she resents. I suspect she thinks me a timewaster. I can't add up in my head anymore and can't remember numbers especially at all now.

  • Scary isn't it? I couldn't figure out what was wrong with me and why I couldn't remember my multiplication table (couldn't remember the answser to e.g. 8x6 or even 5x7) or add two double digit numbers in my head. I'm an engineer and used to have a super sharp mind, and now I can't even do simple arithmetic, very depressing (and I'm just under 40!!). :-/ The decline was gradual in the beginning so I just chalked it up to tiredness etc.

    You look *severely* hypothyroid - that can also affect your cognitive skills, as well as the other symptoms that overlap with B12D. Are you on the thyroidUK forum? Perhaps they can help you, as 100 T4 is obviously not nearly enough for you. And with ferritin, Vit D, and B12 values as low as yours, I'm surprised you can function at all! I hope you can start addressing them.

  • Thanks for the post, it's really appreciated. I have an appointment for Monday next. Will post with developments.

  • Thankyou for you kind words they are much appreciated. Appointment at GP surgery on Monday. Will post how I get on.

  • Great ! Best not supplement with B12 because the doc will surely take a blood test and you don't want it to be elevated . You should also be tested for the abtibodies to the Intrinsic Factor . We are all concerned about you and we know how ignorant many doctors are on the subject of PA . Very best of luck .

  • When I had a B12 serum reading of 159 , I was in a terrible state like you . My GP thought 159 was OK. ! I had to resort to a private doctor to get the diagnosis of PA . I now self inject as I can only get one injection every 3 months and I need one every 10 days . Cost ? About £1 each - that's the price of my good health now ! I think that's very very cheap ! All the best miglet54 Always get back to us whenever you need us !

  • I'm sure that it cost them more than £1 a day for the antidepressants that I didn't need or take. They did give me some heavy duty vit d as it was just 30, although my daughter with pa was only 7. Thanks for the kindness, I may go the route of self medicating if I don't get enough support from gp.

  • I'm sure that it cost them more than £1 a day for the antidepressants that I didn't need or take.

    Actually, it's more like 5p per day (paroxetine is £1.60 for 30 x 20 mg tablets; fluoxetine, aka Prozac, is less than 3p per day).

  • Well that accounts for the doctors prescribing them so readily , instead of doing a proper investigation .

  • Appointment on Monday next, thanks for the kind words.

  • Hi

    Nice to hear your health has improved.

    I'm currently in UK where you can't get B12 injections without a prescription.

    Can I ask where you get your B12 injections. Are they Methycobalamin or Hydroxocobalamin(which is the only form you can get in UK).

    I've tried Methyfolate injections which I ordered from outside of UK which has hardly any effect but is almost impossible to get the B12 Hydroxobalamin injections unless it is prescribed which the doctor won't do,

    Wish you good health in the future and look forward to your reply.

    Just one more thing if you could shed some light on.

    My B12 was very low and my doc put me on B12 injections saying that my body doesn't absorb B12.

    My wife is also on them, my mother, my father and even my 2 kids (18 and 16).

    My wife is of no blood relation to me. My mum and dad are not blood related. (It's common to be of some kind of blood relation in Asian culture).

    I was thinking how can all of us not absorb B12 !

    We are non vegetarian so have plenty meat, chicken, fish in our diet.

    Could the doc be wrong about all of us not being able to absorb B12 ?

    How does he come to that conclusion without any of us trying oral supplements for B12?

    Sorry for the long post but it's confusing and wierd that non of us can absorb B12! That's 6 people in the same household.

    I also have a 13 yr old who is low on B12 ???

    Hope you or someone else reading this post can help or advise me.

    Thanks to all the great helpful people on this forum.

  • First of all,I use I use Hydroxocobalamin . I have used Methylcobalamin in the past , but for me it didn't have any advantage over Hydroxo . When I used Methyl . I got it from Germany from a small pharmaceutical company in Munich called Arnika . They supply it in ampoules . They are the only company in Germany to produce it in ampoules for injections . They now have given a UK company the rights to sell here . Can't remember the name . But someone on the forum will know. It is now more expensive. You can obtain dried Methylcobalamin from Oxford Biosciences , but you have to get the saline from Germany to reconstitute it . ( they tell you how to do that)

    I get my Hydroxo from "versandapo.de in English " yes just google that and you get straight through to the site in English ! Magic! I buy in bulk -100 at a time . Much cheaper, and P&P costs the same as for 10. You can get 1 mg in 1 ml or 1 mg in 2ml . Search for Vitamin B12 , and you will get all the possibilities . Enlarge the pictures , because they stock Cynocobalamin ampoules as well,, and Hydroxo is really superior , nearer to absorption . Hevert are good , coming in 1 mg in 2 ml saline . Rotexmedica also good in 1 mg in 1 ml saline . But do enlarge to see what sort you are looking at ! , as they do both Cynon and Hydroxo .

    As for your other question that is very difficult . First of all it could be a giant coincidence ! If the doc says that you don't absorb B12 he must be able to say why. We know it's not diet . Could be P A. Has he tested for that ? He should have especially if you have symptoms . You are unable to absorb if you take PPI s (Proton Pump Inhibitors )long term which nullify your stomach acid . which you need to absorb B12. Fish tape worm do the same- raw fish or insufficiently smoked fish .

    I hope that you get some better answers than mine . There are some clever people on this forum !

    Best wishes to you and your family

  • Thanks Wedgwood, I bought my first hydroxocobalamin from versa apo, I only bought 4 x 10 as I thought that they only had a shelf life of 8 or so weeks. GP appointment Monday am, I have missed the last 2 appointments as I forgot to go. In fact I forget everything! Will let you know how I get on, I'm glad to have picked up so much in the time that I have been reading posts and replies.

  • Well done , miglet54. The ampoules have a long shelf life as a rule . Yes , the bad memory is one of the symptoms of PA/ B12 deficiency !

    Wishing you all the very best !

  • You will get help from this site if you do decide to go down that route The thought of self -injection horrified me , but I can assure you it is an absolute doddle once you are used to it. It has made all the difference to my life . I got all the help I needed from this site!!"

  • You're a gem, thanks.

  • Hi Miglet54. Hello and welcome.

    As Jade_s says above, your thyroid results indicate that your thyroid meds need adjusting - your look severely hypothyroid - have you posted these results on the Health Unlocked Thyroid forum? Folks there are very knowledgable and will be able to advise about meds etc.

    Your ferritin, folate and vitamin D are are low - this can make you feel very ill indeed.

    Your B12 is showing insufficient. As your result does not show deficient, this result is in what's called the grey area - some GP's will treat this, some won't, unfortunately.

    Many GP's are unaware that they should treat the symptoms and not the blood results. A complicating factor in your case is that there is a lot of cross-over between the symptoms of thyroiditis and the sypmptoms of B12 deficiency and your GP may well say that your symptoms are simply due to your thyroid being out of control. But... Although p.thyroid issues and B12 deficiency go hand in hand and have similar symptoms, they are two different conditions and each should be treated independently and at the same time.

    I note that you have Hashimoto's thyroiditis (an autoimmune condition) and that your daughter has been diagnosed with PA (another autoimmune conditions). As autoimmune conditions run in families and you have one autoimmune condition yourself, it is likely that you also have pernicious anaemia. Has this been diagnosed? Certainly, your gastric symptoms could be down to PA. I'm surprised that your GP has just left you on PPI's (which lower B12) for so many years and not investigated your symptoms further.

    Your GP should test your anti-IF antibodies and also do a FBC to check for macrocytic anaemia (enlarged red blood cells seen in PA) and other things too. The IF test is only 50% accurate so,you can still have PA even if you test negative (called anti-body negative PA). Your gastric issues may be complicated or caused by a heliobactor pylori infection - your GP can diagnosis this by doing a breath test - I'd certainly for this. (Interestingly, infection with HP can also lower B12 levels).

    As you obviously have autoimmune things going on, it would also be a wise for your GP to check your anti-nuclear antibodies (ANA) and inflammatory markers (C-reactive protein and ESR) as a diagnostic to determine whether further auto-immune investigations are necessary.

    So...the obvious thing to say is that your GP should treat your low vitamin D and folate and your B12 insufficiency. Please do not let your GP give you folate unless also addressing the B12 insufficiency (folate and B12 work together so if your folate is low your body cannot utilise B12 properly. But...giving folate alone can mask a B12 deficiency and allow neurological damage to take place).

    Becuase on your long-standing gastric symptoms and the family history of PA and autoimmune disease it would be appropriate to ask your GP for a referral to a gastroenterologist for further investigation and diagnosis (gastro should want to do an endoscopy and also test you for heliobactor pylori bacteria).

    If you read the PAS pinned posts to the right of this page when you log on, they will give you lots of information about diagnostic procedures and the treatment your GP should offer and provide. See in particular the NEQAS guidelines - about treating B12 insufficiency when in the grey area - and fbirder's document (Frank Hollis document) which summarises all the relevant guidelines relating to,PA and B12 deficiency. As GP's tend to be very ill-informed about these conditions, many people here become their own experts so that they can help their GP's to help them...so this might work for you too 😀.

    Please also be aware that it will not be enough for your GP to simply give you six loading doses of B12 - this should be followed up with the appropriat regime of B12 injections (every other day until no further improvement then every eight weeks - if you have neurological symptoms and loading doses followed by every three months - if you do not have neurological symptoms. (There is a symptoms checklist in the PAS pinned posts it you're not sure about which symptoms are which).

    It's worth mentioning that the golden rule to treating B12 deficiency (or insufficiency) is to treat the symptoms, not the blood results. Your GP may not know this.

    GP's can be quit difficult (and sometimes hostile 😖) about treating B12 deficiency, especially when results are the grey area. This is because they simply do not understand B12 deficiency. Some will listen to,knowledgeable patients. Some will most definately not.

    If your GP proves to be one of the ones who will not listen and will not treat you, please post again and people here will be able to advise further about things that you can do to try and get treatment.

    Good luck with your appointment and please let us know how you get on 😀

  • Thank you for the very lengthy post, it must have taken an age! My b12 was either 350 or 250 in March this year when I had blood tests re the Fibrous Dysplasia. I think that is an autoimune thing. So if they are difficult about it it won't be long until I am deficient, although I don't really want to get any worse just to tick the GP's boxes. My daughter has pa but it was diagnosed in Southern Ireland and not treated here. She is treated like Mummy Munchausen. Her daughter has been back and forth to GP with tiredness mouth ulcers etc TSH was 2. 65. My daughter insisted something was wrong with her but the doctor said that she was putting her health problems on her daughter. She the grand daughter now has EBV. Not something that can be imagined.She's just 16 and doing her mocks. So it looks like things are running in our family.I will let you know how I get on. I have the STTM book on kindle but have ordered a paper copy as it's easier to go back and forth also Sally Pachalok' book could it be b12? So I am armed for the fight, let's hope my words come when I need then, they have the habit of not being there when I'm in a tight spot.

  • Hi Miglet54. I know what you mean about words...mine always fail me when confronted by a surly GP or consultant 😖.

    Now I always make a bullet point list of all the things I want to cover. Also take someone to act as 'witness' - medic's always seem more accommodating and less hostile when there is a witness in the room. Sad, but true.

    Some people print the PAS posts, highlight what's relevant to their case, and hand these to their GP or consultant to read. All from recognised guidelines so can't be accused of reading Internet rubbish (what patients are often told).

    And what has happened to your daughter and grand daughter is shameful - but unfortunately not the first time we've heard that here. So very sorry that they have been treated like this.

    And don't worry, post didn't take too long 😀. Just like having a chat only with fingers madly bashing away on the glass 😉😉😀. But correcting all the mistakes from auto-correct is sometimes very interesting 😱

    Good luck, hope all goes well and let us all know how you get one 👍👍

  • "although my daughter with pa"

    The fact that you have a blood relative with PA makes me surprised that the GPs are not considering PA as a potential diagnosis in your case. Are there other blood relatives with PA either now or in past generations?

    PA and family link

    pernicious-anaemia-society.... See section on Genetics

    Have you considered joining the PAS?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    martynhooper.com/

    Other B12 info

    1) Pinned posts on this forum

    2)

    b12deficiency.info/

    3)

    b12d.org

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    5) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart

    I found it helpful to read the whole "BCSH Cobalamin and Folate guidelines"

    About three quarters of the way through there is a diagnosis and treatment flowchart that shows the recommended process that UK doctors should follow with someone who has low b12 and/or is symptomatic for B12 deficiency. It's possible that some GPs may not have read this document. About a quarter of the way through is info about UK B12 treatment.

    I gave a copy of this document to my GPs along with a copy of Martyn Hooper's latest book and the PAS symptoms list with all my symptoms ticked.

    b-s-h.org.uk/guidelines/ Click on "Diagnosis of B12 and Folate Deficiency"

    B12 symptoms lists

    pernicious-anaemia-society.... click on Symptoms Checklist

    b12deficiency.info/signs-an...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thanks for the post and the links, they are very helpful. My mother died at 39 yrs when I was 21, she was adopted and all she knew of her parentage was that her mother was 15 yrs and the father was a Norwegian seaman. I gather that folk from that area have a higher incidence of pa. I do have the recomended books, thanks. I'll post my news after my appointment on Monday next.

  • Do post these results up on Thyroid Uk too miglet :)

  • I have done, Thankyou. I did get one reply, however there were a lot of posts and I think mine was swamped. Dr's appointment Monday.

  • How did you get on at your doctors miglet54 ?

  • Next Monday.

  • He Miglet. Your levels are very low, (deficiencies begin to appear in the cerebral spinal fluid below 550), and, with history of vegetarianism, autoimmune and neurological symptoms, your GP should be treating you with B12 injections urgently as per BNF/BCSH guidelines in the pinned posts on the right hand side of this site:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement."

    However, few GPs understand PA/ B12 deficiency, so it would be a good idea to go armed with your history, list of symptoms and information, in case needed. It might also be as well to take someone close to you for support, to ensure these results and symptoms are taken seriously. Without wishing to alarm, the longer you are left untreated, the longer it will take to recover and greater the risk of permanent damage.

    To start with, here are some helpful sites you may not have seen:

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

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

    The above latest UK research document has a useful summary and important information re. blood tests - bottom of page 4 under 'how is response to treatment assessed'.

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

    Hashimoto's and PA are both autoimmune diseases, with symptoms overlapping, and many researchers believe the source is 'leaky gut', so following a gluten free diet usually helps.

    Also, your TSH appears high - 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 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."

    Very best wishes for a good outcome Miglet.

  • Thank you, I have an appointment Monday week and will go armed with my facts. I'll post my experience, not holding my breath either. Receptionist said none of the doctors at the centre has any special interest in pa or thyroid. Just to say I was sent out of classes at school for continuously yawning when I was 12, that's 50 yrs ago, I wasn't a vegetarian then.

  • Good luck with your appointment.

    Yes, Martyn Hooper describes it as 'the sighs' - just one of the very subtle symptoms that can take years to creep up and manifest in different and more serious ways......

    There seems to be a frightening lack of awareness amongst GPs of how many people are showing the varied and overlapping symptoms of autoimmune disease, or that B12 deficiency builds DNA, so that family history is important in identifying PA/B12 deficiency.

    I can identify with so much of your family history Miglet, beginning with my mother, who had rickets as a child and came to England before the war to escape poverty. She died in her early fifties and I'm now sure was B12 deficient most of her life.....

    My daughter, granddaughter, (also studying for A levels and just misdiagnosed ME and borderline Hashi's), vegetarian sister (misdiagnosed ME for years, more recently dementia and psychosis!) and niece, all have autoimmune problems with overlapping symptoms.

  • Thank you polaris, gp has sent my grand daughter to 16 weeks CBT , it's so easy to send people down the psychiatric route rather than them stick their necks out and try a loading dose of a cheap but powerful medication. They put her on the pill too, rather than a address the rising TSH levels. All her vitamins were low too. I'm going to get her a Thyroid plus 11 from Blue horizon, and if I can afford it the active b12 too.

  • Hi,

    I take the following to appts where B12 might be discussed..

    1) BCSH Cobalamin and Folate Guidelines (link to this in my post above)

    2) A copy of the summary fbirder compiled. It's the last link in third pinned post or on his profile page. lots of useful quotes from mainly UK B12 documents that I have found handy when faced with a medic who hasn't done their homework on B12.

    3) In past I took a copy of PAS symptoms list with all my symptoms ticked plus added any extra not on list.

    pernicious-anaemia-society....

    It might be helpful to talk to PAS before your appt.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Have you ever got a copy of your complete medical records?

    Some GP surgeries have online access to a summary but this might not contain everything. There was at least one person on this forum who found out that they had been diagnosed with PA in past but had not been told at the time. Can be expensive, think tens of pounds, but can be interesting to see what has been written in past. In my opinion it's more difficult to get records from hospitals.

    england.nhs.uk/contact-us/p...

    Link about writing to GPs about B12 if unhappy with treatment....

    b12deficiency.info/b12-writ...

    HDA Patient Care trust

    A charity that offers free second opinions on medical diagnosis and treatment. They are normally quick to respond to enquiries.

    hdapatientcaretrust.com/

    HDA pct tel no 0207 935 8366

    HDA pct online contact form hdapatientcaretrust.com/con...

    "it's so easy to send people down the psychiatric route rather than them stick their necks out and try a loading dose of a cheap but powerful medication."

    Yes I totally agree with your statement.

  • HI there Miglet,

    I am a veggie to , unmedicated with B12 over 2000.

    I also have top of the range Folate.

    I would suggest that with a vegetarian diet, your folates should naturally be really high? What is your diet like - are you eating loads of green every day?

    If you previously had B12 shots, did you replace with supplementation when they stopped? As someone else has said, folate is really important in processing.

    I have similar to you but no diagnosis.

    Years on PPIs - recently weaned off then with help of slippery elm every morning for ten months. Still have to watch diet as big carbs give me acid reflux and I cannot drink alcohol at all.

    Tired all the time

    Numb patch on foot

    mood changes

    massive weight gain

    etc etc

  • Hello Hedgehog2893,

    I eat the same as I cook for everyone else but without the meat and fish. I eat eggs and cheese lots of lentils. I don't eat tons of greens, just a regular portion. We grow our own veg so eat what is in season.

    I didn't replace the shots with anything, my GP said that I was fine now, people of my generation take their doctors word as law until they realise that they are wrong. After being poorly for some time I realise that changes need to be made.

    Its not clear to me how we are the same, you being top of the range for both b12 and foliate, mine are in my boots. Are you supplimenting b12? Do you mean we both have the same symptoms? I am hypothyroid too I gat her that the symptoms cross over, have you inv estimated? . Will you struggle to get a diagnosis with the levels you have? Thanks for the reply and sorry to be so thick that I cant make out the comparison.

  • Investigated, sorry autocorrect.

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