Pernicious Anaemia Society
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B12 neuro symptoms appear worse Advice before GP appointment please

Hello, I am hoping for some advice please before GP app next week. I have posted before. Lots of severe neurological symptoms. I have been on at least 2 B12 injections weekly for past year.Diagnosed June 2016 b12 166 ng/L. I have been feeling recently that I am deteriorating. The sensations in my feet and ankles are getting worse. The burning or ice cold symptoms are constant. The soles of my feet are changing texture and look like leather. My toes and heals feel like they are stuffed with cotton wool and my toes most of the time will not bend as they feel full. My ankles lock in the evening when I sit down and I feel I am walking with broken ankles. I am taking magnesium for spasms. I have cut out all gluten as this appeared to cause spasms, and sugar seemed to aggravate the nerves. Also I think maybe my thyroid could be contributing to my symptoms. I had tests done some months ago and again a few weeks ago. I was reluctant to go back to my GP as she thinks nerve damage means antidepressants. My thyroid tests were similar 10 months ago and GP would not hear of me being treated. A locum has started in the practice and I am hoping maybe will have more insight. My thyroid test a few weeks ago was

Serum free T4 level 14.4pmol/L range (10.6 -23.2)

Serum THS level 3.67 mU/L range (0.3 -4.2).

Vitamin D 69

Folate 13.1ug/l.

I take 400 mcg folate 3 times weekly.

I really don't know what else to do. Whether I should up the b12 to 3 injections again per week, but feel after this time I must be swimming in b12. My GP thinks I am on one B12 injection weekly which was prescribed by Consultant last October. Not sure how I should approach appointment. Just feel helpless. I appreciate any advice.

Thank you.

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Hi Potter5,

I've only got time to leave a very short reply. I've written some very detailed replies recently which may have some useful B12 info if you search for them on the forum.

You mentioned in your older thread that you did not have PA. Do you know what has caused your B12 deficiency?

Risk factors for PA and B12 deficiency

Sorry about the bold script. Not sure how to get rid of it.

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Is your doctor aware that it is possible to have PA even if Intrinsic Factor Antibody test is negative or normal range?

Links below mention Antibody Negative Pernicious Anaemia

BSH Cobalamin and Folate Guidelines (UK document)

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

If you think Antibody Negative PA is a possibility, it may be worth joining and talking to PAS (Pernicious Anaemia society).

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

"Also I think maybe my thyroid could be contributing to my symptoms"

Might be worth posting thyroid results on Thyroid UK forum on HU.

I am not medically trained.

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Hi Sleepybunny, thank you for your reply and so much information. I read posts here every day and have gained so much information from your posts and that of others. I am just concerned that I may be going down a bit. I had tests done for PA but these were negative. I know they are only 50% accurate. Yes I explained to my doctor that my grandmother and aunt died from PA and my mother had lots of leg symptoms but not diagnosed, and all my mothers brothers and sisters and I also went grey very early. I started going grey as a very young woman and I believe this is another indicator for PA, but my GP takes none of it on board. Marz had suggested retesting of thyroid and I am just trying my luck with new GP in the hope of treatment but not actually sure if these readings are sufficient. Just feel something needs done as I am really struggling. Thank you again. Best wishes.

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Hi again,

PAS might be able to point out useful info to you especially official documents. I'd suggest talking to them soon if you are concerned about further deterioration.

In some cases they can intervene on behalf of PAS members although I think this is easier for them if a person has confirmed PA.

PAS membership costs £20 for a year.

pernicious-anaemia-society....

PAS members can access details of PAS support groups which can be a source of info on helpful GPs etc.

pernicious-anaemia-society....

I think if you are symptomatic for PA and have several blood relatives with PA there's a strong possibility that you could have PA. PAS could tell you more about family link in PA.

The flowchart in post above outlines when PA or Antibody Negative PA can be diagnosed.

My understanding is that if a person is symptomatic for B12 deficiency, other causes of B12 deficiency have been excluded, IFA test is negative then they can be diagnosed with Antibody Negative PA according to flowchart.

Has your GP seen the BSH Cobalamin and Folate Guidelines and this flowchart?

Link about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

When you were first diagnosed with B12 deficiency, how many B12 loading doses did you have?

In UK, people with b12 deficiency with neuro symptoms are supposed to have a B12 loading jab every other day for as long as symptoms continue to improve (this could mean loading jabs for weeks even months) then normally it's a jab every 2 months.

Did you have every other day loading jabs for at least a period of weeks? If not perhaps GP would consider repeating the loading doses?

UK B12 treatment info in

1) BNF Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

cks.nice.org.uk/anaemia-b12...

GP probably has a copy of BNF on desk.

2) BSH Cobalamin and Folate Guidelines, a quarter through guidelines.

When did you last see a neurologist? There are many causes of neuropathy.

Have other conditions been excluded eg diabetes,

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Hi Sleepybunny, thanks for PAS information, I probably will join, just hesitated because the test said I didn't have PA. I was diagnosed June 2016, I asked GP to test b12 after doing research on line. For a number of years I had been going to GP with vertigo, palpitations, tiredness, restless legs, IBS . No connections were made . Then around February 2016 the fluid behind my left eye changed density and I am left with a thick wavy line and circle and impaired vision. I asked my GP what would cause this she said "these things just happen". In my view, nothing just happens. It was also at this time I was experiencing strange sensations in feet and ankles. Feet stuffed with cotton wool and tight banding sensation around ankles among other things. And mentally in a dark place that I never new existed. GP said sensations were vascular and put me on waiting list which was going to take 2 years to see a vascular surgeon. At this time I was desperate for help and information and searched online and found health unlocked. With the information and pointers to research I started to put connections together and asked GP to do b12 test. It was really low. 166. I was given 6 loading doses then was prescribed B12 injections 1 every 3 months. I was really struggling and in the meantime went privately to Vascular surgeon He said sensations were neurological not vascular and referred me to Neurologist around October 2016 who prescribed me 1 b12 injection weekly and said the nerves take several years to heal. I didn't argue with the frequency of b12, just glad to have prescription to take to GP. I also si 1 b12 injection weekly and for about 4 months after consultation had two at home weekly. Although lots of symptoms flare up much less frequently, feet improved very little and I feel I am placing my feet down very heavily. Can't control body temperature and am always cold, freezing cold . This coldness made me think perhaps thyroid, clutching at anything really. Don't want to waste opportunity to get positive outcome from app next week. Thank you again Sleepybunny and apologies for this long post. Best wishes.

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getting confirmation of PA is very difficult - the IFA test gives false negatives 40-60% of the time depending on the assay method - which means a negative result is a long way from proving that you don't have PA.

You don't have to have a firm PA diagnosis to join the PAS

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Hi potter5....have you had a test to see what level your b12 is now...you can get the same symptoms from too much b12 and having not enough and also too much in one hit or too close together Google this The side effects of too much b12/LIVESTRONG. Com. My b12 was also 160 but 275 now with taking just a 1/4 of 1000mcg tablet every week...even taking that I got more dizzy and more loss of balance and pins and needles I did'nt have before. My PA was also negative. You only need 2.4 mcg a day if you are healthy but of course you need more when deficient but I worry when you take 1000 upon 1000s mcg of b12 it's too much. I saw on line it is reversable but it takes time. Anyway just trying to help...all the best

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I've seen you mentioned this before, but my understanding is that B12 is definitely NOT toxic and is not harmful even at very high doses. I personally don't trust Livestrong as a reputable source of medical information.

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Hi Curlygal, I get worried because of the length of time I have been injecting with little progress and sometimes think I am getting worse, but as my symptoms flare after a few days I need my injection. Sometimes I feel I will never be well again, very frightening. The coldness for instance is much worse and I am heavier on my feet and I was always light. That's why I was wondering if the thyroid was contributing and that it was not alll b12 related. GP doesn't listen and thinks nerve damage means depression and anti depressants so this site is a lifeline. Thank you. Best wishes.

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I can see why you would be getting discouraged after doing it for a year! I've been SI for about 4 months, alternate days for 3. I started with the Dutch protocol but felt worse on day 3, so increased it. I have the cold freezing feet and neuropathic pain, but in the last month the feet have improved after being worse than when I started. My other symptoms have not improved particularly so the GP is doing more blood tests in case there's something else going on. I too thought of thyroid but apparently the lab will only do the other thyroid tests if TSH is abnormal.

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Hi Curlygal, I had 3 injections a week for about 4 or 5 months initially and went down to 2 because I thought 3 was a bit much for me but now even after a few days Iknow I need my injection. You mention thyroid I think you need to get a copy of your tests and not just take GP stating all is normal. I hope you continue to make good progress. Thank you again. Best wishes.

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Hope you can find a way through this. Yes I got a copy of my test results, they have only ever tested TSH for thyroid, but it has been going down not up from about 3.5 to about 1.5. My mum is hypothyroid so they check it regularly.

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Thank you Curlygal and I am glad you get your text results and able to keep an eye on things. I hope you keep well. Best wishes

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And to you. Thank you.

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From personal experience, I believe that different types of b12 "react" differently in the body. If I take methyl b12 supplements, my neuro symptom of balance problems gets worse. I also thought I'd taken too much but for me, once I'd started on hydroxocobalamin sublingual tablets, my balance improved. Now with injections, this has further helped.

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Hi Highland49, thank you. It is hydroxocoblamin injections I use. Occasionally I take methyl sublinguals but not enough to say what difference it makes. I did have half a 5000mcg once each week over last few weeks. My feet were burning like crazy with hot needles, so not sure if there was a connection there. How often do you inject? Thank you again for reply. Best wishes.

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Alternate days but I'm quite a newby to this. Hopefully the hydroxo sublinguals will help a lot more. All the best.

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Hi Highland49...that explains it then..I'm taking Methylb12, I will have to change to Hydrox. Thanks

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Hi again, yes some people do say that when nerves are repairing you get certain sensations, I am not sure either haven't seen any studies but just after an injections and just for a small amount of time the stuffed cotton wool feeling goes out of my toes, short lived but it makes me feel that it is the b12 which will repair the myelin sheath. My GP hasn't a clue about this condition and I am forced to research and try and to look after myself. I may be taking too much and do get concerned but if I leave the injections for more than four days verything gets worse. I appreciate your thoughts and comments, if I felt a little better I would consider cutting down. Best wishes.

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HI potter5. I have had this burning feet and felt toes problem so started doing 2 weekly injection at middle of July. That worked but was like falling off a cliff at the end of the 2 weeks. The worst was after a wonderful 12 days in Canada at the beginning of August so the burning and sore feet kept me well occupied on the 7 hour flight home. Since then I have upped the injections to every 7 days, no point trying to expand it yet as it just comes back bad until the next injection. There are other problems too.

I have mentioned before on another thread I have found just soaking my feet in a bowl of hot water is very beneficial, especially in the late evening before going to bed. I then keep my socks on in bed - I use bamboo socks as they have a good balance between softness and warmth. Even if it doesn't actually make a difference it does make you feel so much better whilst your feet are soaking especially sitting with a noggin of your favourite tipple, alchofrolic or not.

The felt toes have gone, my toes feel as though they belong to me now. Mind you the nerves have all woken up and are having to get used to it again. I can walk much better as well.

It felt last evening as if I was going to have to do something similar with my hands as they were tingling and having shooting pains all over. This morning they are fine and even if they do get a bit irritating this evening I know they are getting much better - I am also getting my keyboard skills back after a 17 year lay off and some of the faster pieces are now as they should be again.

It was so disappointing at the start of this trial to find the symptoms all got better at first then gradually returned, not to quite the same level, perhaps 9 out of 10, just before the next injection was due. But when starting from the new level at 10 going down to 2 or 3 then getting back up to 9 meant the level was always improving and it is still doing that. I am intending to carry on with this weekly regime until there are no improvements then see about extending the injection interval.

I haven't felt this lively for ages.

If there is one thing I have learned from the experience of B12 deficiency and from this forum it is that there isn't an instant fix but perseverance pays off in the end.

All the best potter5.

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Thank you for your reply kcbrecks. I will try the soft bamboo socks, I really need soft socks and not tight. I am inclined to keep my boots on all day as when my feet are enclosed in them my walking is easier, when I take them off at night they go crazy, lots of sensations, burning, ice cold, pins and needles and stabbing. toes stick together and ankles lock. Practically crawl down the hall to bed. Driving me crazy.I will try the foot bath also and maybe add a little epsom salts, I think someone mentioned this. So good you can enjoy a little tipple. Alcohol seems to aggravate my nerves so only have a glass of wine occasionally. Although I did say to my partner earlier if it wasn't for this condition I would have loved a hot toddy with lemon, cloves and honey this cold evening. Salivating. lol. I am glad you are making progress on the 1 injection weekly. I have come to think that all the symptoms come and go in cycles. Some less frequently. For instance I get a burning tongue, lasts for a day and disappears. Mouth ulcer, every few weeks , lasts a couple of days and gone. Feet have never really recovered. I mentioned in a post earlier after my injection the cotton wool feeling leaves my toes and they feel normal but maybe only for half hour or a little more. Then they fill up again. I am much worse at night when I am tired. I don't know if this means the nerves are dead or not. I just keep hoping for improvement. Thank you again, it is just good to know you are not alone. Best wishes kcbrecks.

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I had a telephone consultation with the GP yesterday. My Folate level is 17 on a scale of 3.4 to 13 so I can stop the 400 mcg daily top-up pill but he is now concerned as my triglycerides levels are up to 12 which is very high on the scale used. So now it is a fasting blood test next Wednesday and a meet with GP the week after,

You get one thing about right and then something else goes wrong. This is the penalty of surviving beyond the 3 score and ten.

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Hi cjbrecks, yes every day something new. I hope all goes well for you next week. Take care. Best wishes

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You're very welcome, I hope they help.

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There were a few other posts with the same thing...I just think if your symptoms get worse or you get symptoms you did'nt have before then that is a warning sign. It's the same with b6, everyone knows if you get pins and needles while taking b6 then that is nerve damage but if you get pins and needles while taking b12 that is supposed to be nerves reconnecting, I don't think I believe that, sure b12 probably is reversable and b6 sometimes is'nt but why go through all that. I just think it is safer if you feel you are getting worse to cut it down

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Stayfocused. For clarification...in the presence of neurolgical symptoms (which appear to get worse), it is not advisable to cut down on vitamin B12 injections:

Apparent worsening of symtpoms can, in fact, be due to neurolgical repair taking place.

To reiterate from my reply to you above:

With time and treatment, your symptoms may change; this indicates that your nerve is healing. A common example is how you may experience weakness, then numbness, then tingling, and then burning pain. This shows the nerve is healing and returning normal sensations. (Extracted from : sralab.org/lifecenter/resou...

Undertreatment of vitamin B12 deficiency can precipitate an irreversible neurological condition called sub-acute degeneration of the spinal cord, which is potentially irreversible.

See my reply to you (below) for further information...and if you need more advice about your particular problems, please put up a new post asking for further advice.

Good luck 👍

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Hi Foggym... thanks for reply...I'm just really concerned about potter5's feet, they are cold, numb and heavy, I had those heavy legs and feet once years ago, I'd taken some herbal naturapathic drops given to me by a Naturapath, I had blood poisoning, it only lasted for 2 days but scared me, I was just looking on the b6 forum and their was someone on there with heavy legs and feet trying to overcome b6 toxicity. It might not be b12, it might be multib's or even folic acid (hopefully taking folinic acid if has MTHFR gene) that potter5 is taking. Maybe good idea to write down all vitamins being taken and take to drs next week. All the best

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Hi Stayfocussed, I am always trying to put connections together and thank you for advice. When I was a young woman I did take B6 for a while, and vitamin E and primrose oil. I didn't have any sensations at the time and haven't taken them for over 30 years, but yes now wondering if that could have kicked things off. I am very careful when taking the multi vitamin and only take one each week as I now understand about the danger of taking too much b6 for instance. I take magnesium 140 mcg per day for spasms and cramps and intend to supplement vitamin d for a while to get levels up. Again with folate I have 3 x 400 mcg weekly. Unfortunately my GP has no understanding of this condition and would try and prescribe antidepressants or anticonvulsants. I know she would put me in a bad place. I am seeing a locum Monday, I think going on bloods, my thyroid is struggling, maybe that is contributing to my really cold feet, on the other hand it may be b12 deficiency not being able to control body temperature. Strange thing is, I had the best day yesterday that I have had for some time. The sensations in my feet eased and the banding slackened. I was walking upright and quite light on my feet. Normally by evening I am barely able to walk down the hall to bed. This condition is frightening, and you don't know what each day will bring. I appreciate the help and advice from the members of this site. Who else could possibly understand. I hope you keep well. Best wishes.

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Hi potter5...glad you had a good day yesterday. I'm still waiting to have a good day. Anyway all the best at doctors next week

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Thank you stayfocussed. Good day totally out of the blue but gives a little hope. I hope you have a good day and many more soon. Best wishes.

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Hi Stay focussed, thank you for your reply. My B12 is now over 2000, but that is because of the frequency of injections and what is in the blood not that which is being metabolised. I do worry that with so many injections I have not made more progress and constantly look at frequency other people inject. After a few days the sensations in my feet, in particular, flare up and the banding gets tighter and after my injections everything relaxes a little. Also because I understand it is the B12 that heals the myelin sheath I am trying it give the nerves the best chance. Yes my Consultant said it can take several years for the nerves to heal but I think I have been deficient a long time and they may not healfully. I had read the Dutch protocol was 2 injections each week for up to 2 years for neurological symptoms, so thought it was safe enough . I am sorry your levels were also very low, and it is really good that you have found the right amount to keep your symptoms at bay. Thank you again. Best wishes.

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Hi potter5...I was just wondering if you had your active b12 done, that way you will know how much has been processed and maybe you could ask to have all your other b vitamins tested. The bs like to work together and having high b12 like you have could have wiped out your other b1,2,3 and 6 which could give you those symptoms. Take care

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Hi Stayfocussed. Never had active b12 done and too late now I think. I would probably have to reduce or stop b12 for this test, maybe I am wrong here. Anyway I know my GP would have me off b12 in a blink. I think that to ensure enough b12 gets through to cells when taking large doses you need to keep levels up. I take a multi vitamin once or twice weekly and 400mcg folate 3 times weekly. Also take magnesium daily which definitely keeps severe cramps at bay. Vitamin D is 69, a bit low I think but also part of multi vitamin I take. I also am gluten free and the only sugar is from fruit in morning with breakfast and have replaced milk in cereal with Almond milk, no sugar there, so try everything but sad that like so many others we are trying to treat and manage our condition. Thank you again for input and I wish you well. Best wishes.

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According to the vitamin D council your levels should really be over 100. 125 being ideal, the amount of vitamin D in a multi vit probably wouldn't even be a maintenance dose. 'Dr Best' do a good high dose (1000-5000iu) without fillers or other nasties. Also, I've read that once you are deficient in D you may need to supplement for life (not sure if this is correct if you emigrated to sunnier climates!) Try increasing the dose with vitamin k2 added. Just a thought.

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Than you so much greenbexy, I will look into this. The multi vitamin I take is Pure Encapsulations O.N.E. multivitamin. The Vit D is 2000 iU but I only take it once or maybe twice weekly. Dark grey clouds and cold don't do much for us I am afraid. I always function better when in warm sunny climate. Thank you again and I will look into this. Best wishes

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Stayfocused. Curlygal is right. For clarification:

Vitamin B12 is non-toxic, you cannot overdose on it, there's no such thing as 'too much' (any excess is excreted in the urine), and it has a proven safety record.

Here's more information, backed-up with referenced research papers:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

And here's a 2017 research paper from an American Consultant Haematologist that confirms the safety of vitamin B12 for frequent use:

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

Whilst it's true that some people do get side effects from vitamin B12 injections, many don't, and the side effects are not associated with 'getting too much' B12 or 'having injections too close together' - they're just side effects that sometimes happen.

B12 should be used with care when there are certain pre-existing medical conditions (i.e. high blood pressure; heart disease; congestive heart failure; liver disease; kidney disease (or if you are on dialysis); if you have ever had a severe allergic reaction to hydroxocobalamin, Vitamin B12, or cyanocobalamin (Nascobal, Cobolin, Cyomin, and others) and in these cases, treatment should always be under the guidance of a medical practitioner.

Note: serum B12 levels following supplementation of any kind is not a reliable indicator of how successful treatment is...and if you have been diagnosed with B12 deficiency and are receiving treatment, a level of 275 would still be considered very low - and additional B12 would be given.

Please also note the following in reference to neurological repair:

With time and treatment, your symptoms may change; this indicates that your nerve is healing. A common example is how you may experience weakness, then numbness, then tingling, and then burning pain. This shows the nerve is healing and returning normal sensations. (Extracted from : sralab.org/lifecenter/resou...

Your apparent worsening of symptoms may be due to neurological repair rather than the assumed assumption that they are due to too much vitamin B12.

Also note: lack of treatment for B12 deficiency is fatal. Undertreatment of B12 deficiency can lead to potentially irreversible neurological damage.

I'm saying this because it's possible that you are under treating your B12 deicency and may suffer neurolgical detriment, as a result.

If you are one of the rare people who allergic to vitamin B12, the Pernicious Anaemia Society website contains details of two consultants who address those issues (both in London). If you live in the UK and are struggling with your treatment, it would be a good idea to discuss this with your GP, and perhaps (if necessary) ask for a referral to one of the specialists who deal,with those issues.

The key to reversing neurolgical symptoms is gettting enough B12 to properly effect neurological repair.

On a side note, there's much on the internet about B12 deficiency and it’s treatment, some right and some very wrong.

A good thing to look for is if what's written is referenced back to research papers...if not, it's not likely to be reliable.

Good places to look for reliable information: Search in google scholar ( scholar.google.co.uk ) or try ncbi.nlm.nih.gov/guide/all/ for research papers.

If you need more information or help, please put up a post and folks here will offer support and advice).

Good luck

👍

P.s. apologies for intruding on your post potter5 - clarifications and signposting sometimes advisable to help others 😉

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Hi Foggyme, I have read the extract you posted re sensations. Maybe the sensations I am experiencing are due to repair. I hope so. Today I am not to bad, I can wriggle my toes, they don't feel so stuffed tonight they may get worse. I hope I am right in thinking that as long as you have some sensations the nerves are not dead. When I saw the neurologist last year, it was just a short consultation. He looked at my bloods and had no hesitation in prescribing 1 injection each week for as long as symptoms flared up. He understood that some people get every other day and the Dutch Protocol 2 injections weekly up to two years but in his view because nerves take time to heal he felt one was enough. He was confident that nerves do heal. I didn't argue the frequency of injections he prescribed I was just glad to have a prescription to take back to GP who would have had me on 3 monthly. For meI decided to go with the Dutch Protocol. I think when symptoms go on for a long time it does wear you down, especially when you do everything to help recovery. I would not consider taking less than 2 injections weekly while I have symptoms, I eat well and take encouragement from posts here. I'm so grateful that people share their experiences and what has worked for them, I have learned so much. I know it is frightening when you are si large doses of b12 but I really believe it is the only thing that heals the nerves. Thank you Foggyme. Best wishes

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Hi Potter5. Yes...it does wear you down when symptoms go on for so long 😖. But unfortunately, treating B12 deficiency is a long-game, especially if deficient for some while before being diagnosed and treated. So, you're doing the right thing by continuing with the intensive B12 regime. Your neurologist is right...neurological repair can take a long time

Also - neurolgical issues can occur in motor, sensory, and autonomic nerves: autonomic nerves effect things that we are not conscious of (like temperature control, breathing, gastric action etc.) so B12 deficiency can have some surprising neurological consequences (and may explain some of your ongoing symtpoms).

Here's a couple of links that give more information about neurology:

webmd.com/brain/nerve-pain-...

nhs.uk/conditions/periphera...

Also - I note that you have a family history of autoimmune conditions. Autoimmune conditions can (but not always) run families so, just wondering if your GP has done a full antibody screen to rule out the possibility of an underlying autoimmune condition (irrespective of whether yo do or don't have PA - and you may well have, even given the negative IF test, and considering your strong family history of it - antibody negative PA is a strong possibility if there is no other identifiable causes for your B12 deficiency).

Might be a good idea to ask your GP to run a full antibody screen if not already done. This won't identify any particular condition but if any of the results are raised, it would be usual to refer to a rheumatologist for further investigations.

Also ask for ESR and CPR (so called inflammatory markers). If these are raised, it would show that some sort of inflammatory process is occurring and again, necessitate referral to a rheumatologist for further investigation.

It is not unreasonable to ask for these tests given your strong family history of autoimmune conditions and your ongoing symptoms.

Even given that you have B12 deficiency your GP should want to rule out other potential underlying causes for your symptoms (like diabetes, and -as others have said - thyroid (including TSH, FT3,FT4, and the thyroid antibodies TPO and Tg (to rule out Hashimoto's - an autoimmune condition), again, especially in view autoimmune disease family history). And TSH does look high (thyroid forum can advise about all things thyroid - some excellent people there).

Also worth noting that autoimmune conditions tend to arrive in 'clusters', so if you have one, it’s quite possible (but not certain) that you can have others too 😖.

Have to say, I'm quit horrified by your GP's comments about your eye problems (change in fluid density, thick wavy line / circle, and impaired vision). If you still have these...or any ongoing eye problems...ask for a referral to an opthomologist. Or perhaps your optician can refer you.

Eye problems like this can sometimes be caused by dry eye syndrome - perhaps due to B12 deficiency but also can be caused by underlying autoimmune condition. Whatever, if you are still having problems with your eyes, ask for a referral to an opthomologist.

The reason why I'm mentioning a possible underlying autoimmune condition is because that's what happened to me (family history, symptoms/abnormal blood tests ignored for years, late diagnosis/undertreatment of B12 deficiency etc.).

Finally had to insist on antibody tests...they were raised, referred to a rheumatologist: after trawling around multiple 'ologies' to rule out other causes for ongoing symptoms, have been on steroids for a year and just started immunosuppressants...so fingers crossed.

Curiously, I also developed a problem with thickened skin on my feet - and feet were so painful that I could barely walk (more to do with 'walking on glass' feeling and swollen painful tendons, than ankles). This has resolved, but no idea whether this is due to intensive B12 or steroids 🤔. But it’s gone 😀.

Not suggesting that all this is applicable to you, but certainly worth getting antibodies and inflammatory markers checked...just in case 😉.

In the meantime, keep up with the intensive B12...and continue to keep an eye on ferritin, folate, vitamin d and calcium levels 😉.

Good luck with GP and post again if you need mor help.

👍

P.s. researching to see if I can find more comprehensive information about neurolgical repair and how symptoms appear to get worse. Neuro research papers are almost incomprehensible (to me, anyway) somtrying to find something more accessible. Not too much time for research right now but will post inthe forum if I manag to find anything (it's some thing that comes up a lot 😳).

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Foggyme, thank you so much for such detailed reply. This condition is so complex and I appreciate all the links. I hope with the treatment you are now receiving you continue to make steady progress. As I said before without this site and generousity it's of members in sharing information, I certainly don't know how I would cope. Thank you again Foggyme. Kind regards.

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Thank you for your reply Gambit. Yes I think I shall join. Certainly, until I found this site I felt really lost. Best wishes.

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mine were worse too, after failing the babinski test again, ,u neuro told me that my pains were not from b12 def but something else ...I await a brain mri. Best to you, keep us posted. hope you find answers soon.

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Thank you gg317, Ihope your MRI gives you answers and you get the right treatment. Best wishes.

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seems like most mri are negative unless your super far advanced in something so I am not expecting anything but my drs thinking I am nuts. lol, true story

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Hi, is your Vit D reading 69 nmol? If it is then accordi g to the VitD council you are Vit D deficient. Im not saying that is causing your health problems but I have peripheral neuropathy and my Vit D was 63 nmol recently and I was advised to supplement with Vit D to get my levels up to optimal levels over 120 nmol by a leading B12 Specialist in the UK

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Hi owenybhoy, Thank you for reply. Yes, 69 nmol/L. It shows on the range anything over 50 is sufficient but I do think it is hovering at the bottom. My GP would have you below range before doing anything. Greenbexy also mentioned this as low reading. I am trying to do everything to help improve my symptoms, I think with 2 b12 injections weekly I should be making more improvement so I will supplement with Vit D. I take a weekly multi vitamin with 2000 iU but obviously not enough. Has supplementing vit d improved your neuropathy, and how much do you take? My feet are going crazy, ice cold, burning, like hot needles and of course the stuffed cotton wool feeling and banding round ankles. I also think my thyroid is struggling. Everything counts, I believe. I appreciate your comments. Best wishes.

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Hi, potter5. The honest answer would be I don't know yet. I have good days and bad days. I had bloods taken by GP earlier in the year when I first started with symptoms. My GP thought it was low b12 (unfortunately I supplemented b12 b4 bloods and my b12 showed up as 400). My Vit d was 36 nmol/l so I started taking vitd. In September my Vit d was 63 and the Nhs said it was adequate but I have since found out it should be well over 100. Like you I am trying to ensure all blood levels are at optimal levels.

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Hi owenybhoy, thank you and I hope you are getting the right treatment to continue to make progress. I am going to get and take vitamin d supplements, and get the level up. Can only do goo, I think. Take care. Best wishes.

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