Help Please

Hello I am fairly new to this forum, although reading posts since last June. I have responded to a few posts but am really in need of advice. I am 64 . I was diagnosed last june with b12 deficiency serum 165. Although I had many symptoms for several years, vertigo, restless legs, palpitations, the fluid behind my eye changing density resulting in thick black wavy lines, floaters, Electrical shock feelings in hands Mentally getting into a very dark place, memory loss brain fog. . None of these symptoms picked up as b12 deficiency by my GP. Not until my feet got to the point that they felt stuffed with cotton wool and tight bandings round ankles that I could barely walk did I start to investigate and finally asked for b12 blood test. I don't have PA. I had initially been put on loading dose then 1 injection 3 monthly. . I saw a neurologist and was prescribed 1 b12 injection weekly. I have also been self injecting, at least my partner gives me the injections since last December a further 2 times weekly. Sometimes I feel a little better but the cotton wool feeling never fully goes. Sorry for rambling, but I feel I am loosing the battle as I feel little improvement. These last few weeks I have started to have fluttering under my left breast and am really worried, although I have had palpitations in the past, had ecg, which was fine but these are new symptoms, also sore tongue and ulcers have returned. I suppose I am looking for reassurance I don't know anyone with this condition, my GP has little knowledge of it and I now feeling desolate and in the wilderness. I eat well my folate initially 6 it is now 12, eating really good diet, potassium 5, ferritin I think 60, not sure. Should I feel more improvement with so much b12 after all these months and is it safe to keep taking 3 injections weekly. My other worry is that even with all this b12 could I be getting worse. Without reading posts on this site since last year I would have been totally lost. Any help appreciated. Thank you.

26 Replies

  • Sorry to read you are struggling. Have you had your VitD tested - if low it can affect how you feel along with many other symptoms. Often low when other vitals are too ...

    Am wondering if you have had your thyroid tested thoroughly and not just the TSH ?? Often low B12 - Ferritin Folate - VitD can lead to low thyroid as optimal levels are required to enable the T4 your thyroid produces to convert into the active hormone T3 - needed in every cell of your body. I am on the Thyroid forum with over 55,000 people - and I am almost certain every thyroid sufferer has reported low levels of the aforementioned. Chicken or Egg ??

  • Thank you Marz, yes I had my vitamin D tested and it is within range, also had thyroid. test which is just inside range for under active, 3.5 TSH also in range. I take a good multi vitamin weekly to help keep all vitamins up, I absolutely believe that everything counts. I just dont seem to be getting better. Thank you again. I think I will ask for thyroid test again although GP won't do it for several months. Thank you again for your reply.

  • Sorry to be a pain - but if you read my Profile by clicking onto my name above you can read how I found wellness !! Only a couple of minutes :-) vitD needs to be around 100. Am still reading and learning and fine tuning :-)

    Just testing the TSH is only part of the story - and is Pituitary hormone - tells the Thyroid to produce T4 - which is a storage hormone and which must convert into T3. So a TSH of 3.5 is indicating a struggling thyroid - so I am thinking your FT4 and FT3 will also be low in range.

    Also Anti-bodies must be tested - Anti-TPO and Anti-Tg to rule out Hashimotos. It is the most common cause of low thyroid in the world.

    The link I posted above takes you the Thyroid website where there is a section on Understanding Test Results - and you will see that with a TSH over 2 Hypothyroidism should be considered.

    A multi-vitamin is often not giving you enough of any particular vitamin or mineral - and if you increase the dose then you can run the risk of overdosing on certain things. Best to be tested and take what you need.

    I doubt your GP will agree to FULL testing of the Thyroid - due to costs - and so people remain unwell. Finger Prick Testing sent to the home is available from several companies .... see below. Medichecks have Special Offers on Thursdays !

    The above link takes you to - Understanding Thyroid Testing :-)

  • Thank you so much Marz for so much information, I will look into it al. I do think my thyroid is struggling, At home my heating is on 25 degrees and in evening I sit with rug wrapped round my feet which are ice cold, so yes I will definitely look into this and the thyroid site.

  • Happy to help - it can be confusing and information overload :-)

  • Your B12 was very low potter5 and It may be that you need to increase B12 self injections for a while as well as take a good multivitamin and mineral supplement.

    I started to experience very similar symptoms after two viruses this year. and suspected that, although taking sublingual B12 supplements for a while now, I probably had not been absorbing enough B12 - possibly owing to hydrochloric acid diminishing as you get older, as well as past gastric problems, h/pylori and Hashimoto's.

    Having already seen the rapid deterioration of a close relative, who had been misdiagnosed with ME/CFS for many years and not given early and adequate B12 injections, I began self injecting.

    Bearing in mind all the research pointing to early and adequate treatment and the fact that you cannot overdose, I self injected 1000 ml Hydroxocobalamin (Rotexmedica B12 Depot) every other day (sometimes every day) over the last five weeks and also carried on supplementing with Jarrows Methylcobalamin 5000 mcg. SL.

    I walked briskly for an hour and half yesterday with no ill effects today. 🤗TIngling tongue, fingers and toes, as others have found, became worse to begin with but all symptoms, especially fatigue, concentration and eyesight, are improving. Generally, I feel more alert and mentally positive.

    I hope this helps forestall any worry about overdosing on B12 potter5. As you've probabably discovered, all the research emphasises early and adequate treatment for neurological symptoms.

  • Thank you so much Polaris for reply. Like you I inject with Rotexmedica hydroxocobalamin every other day but because it has been almost six months now I am starting to panic. I will get some Jarrows SL, do you take on the days you don't inject. I am glad you are making progress. I also take Pure Encapsulations multi vitamin, but just once or maybe twice weekly. Thank you again.

  • I understand how worrying it must be to feel little improvement after doing all you can.

    Marz has given good advice about the thyroid, linked with B12 def. and, being autoimmune, often has the same root cause - leaky gut. Many researchers believe a gluten free diet helps heal the microvilli, the little brushes lining the digestive system that enable absorption of essential nutrients, especially B12.

    Dr Datis Kharrizian, in his books, 'Why Do I Stll Have Thyroid Symptoms' and 'Why Isn't My Brain Working', recommends a g/f diet and believes this, combined with other remedies, will often reverse or prevent borderline Hashimoto's progressing. I certainly found a g/f diet and daily spoonfuls of sauerkraut healed all the digestive problems that plagued me for years.

    Re. supplementing injections, Sally Pacholok recommends this and I still take Jarrows every day, even though injecting.

    Just wondering if you are on any other medication at all, even otc painkillers, as some research found groups not taking these had better response to B12 over group that did.

  • Hi Polaris, thanks again. and yes Marz, did give good advice which I took on board when I had an app with my GP earlier today because of fluttering under breast. GP said my heart was ok and that probably it was due to b12 deficiency. I broached the thyroid issue explaining my feet are freezing cold even in warm environment and that I thought my thyroid was struggling. GP wouldn't consider treatment , said my thyroid was fine even though it is close to bottom of range. When I explained how distressed I was she tried turning it around and wanted to give me anti depressants, which I refused. My nerves are damaged, not depressed. GP just doesn't get it, but I will keep on top of thyroid issue and get retested in a few months.

    I also have gone gluten free for about 4 months now and eating a very healthy diet. Watch sugar and salt intake and take lots of leafy green vegetables and add lemon juice, also eatplenty of fruit and potassium rich foods.The only other medication is 75mg aspirin as I have a some pheripheral arterial issues, also caused I believe by b12 deficiency. I have also recently started taking a few drops of medical cbc oil daily, It has definitely helped, it is very calming and helps me sleep. My sleep pattern has been poor for some time, waking up at 3.00am and not getting back to sleep and exhausted and since taking the oil I have a good night's sleep. I just want to feel well. Thank you again for advice and reply. Best wishes.

  • You've obviously done good research potter5🤗 and those of us who've experienced undertreated thyroid will know the frustration you're feeling by rigid tests and GPs general lack of knowledge. TUK forum is really helpful with excellent advice.

    Really interesting and coincidental about the medicinal CBC oil as a friend sent a link mentioning it yesterday!

    I find a daily supplement of combined garlic, olive leaf and hawthorn rather than aspirin works for me after heart issues in the past from undertreated thyroid - now no need for the high doses of beta blockers etc. specialist insisted I take years ago....

    Very best wishes to you Potter5 and I hope you start to feel much better soon.

  • Thank you Polaris, I hope you keep making improvements also. I am a garlic head but have not heard of olive leaf and hawthorn combined, is it a supplement. I have decided if I can keep away from my GP for some time it would be better and can I ask one more thing, please, the Jarrows sublingual you take, have you ever had any adverse reactions, I read some reviews people saying they thought their brains were being fried, sounds scary, thank you again.

  • Well, there's a thing! just looked at sites where I last bought Bional Garlic Olive Leaf Hawthorn and noticed price is higher and everywhere is out of stock, apart from Amazon - price again is much higher than I paid. Sending this link to old fashioned family herbalists but even here price is high & they're also out of stock - they do sell the herbs though so may have to make my own... Forgot to mention that I also take Q10 & magnesium for heart and BP issues.

    Re. Jarrows B12 capsules, they work better for me than anything else - take long time to dissolve under tongue so it could be more B12 is absorbed ?

    I'd not heard or experienced any bad effects - quite the contrary - as all the 5 star reviews for neurological symptoms on Amazon confirmed. Though I noticed last time I looked that these have been removed ! ? 🤔

    I think I'm beginning to get a bit paranoid wondering about all ththe above and why it is now so difficult to get thyroid treatment, T3, NDT, B12 injections, etc. BIgPharma?

  • Thank you so much Polaris, I will look into garlic, olive and hawthorn also will go ahead with Jarrows sublingual. May just help with my cotton wool stuffed feet. I take Pure Encapsulations O.N.E multivitamin which includes CoQ10 and magnesium but only once or twice a week . I think you are right about Bigpharma, closing doors on people getting what they need. Just have to keep searching. Again, thank you for so much information. Kind regards.

  • Has your GP checked your thyroid?

  • Hi Hmstgirl, yes I have had thyroid checked T4 15 the other part 3.8 I think, ap which is high but not over range although it had been 4.2.2 in February and GP still refused to treat. While I was at surgery yesterday I asked my doctor if it would be beneficial to treat, she totally refused. As Polaris and Marz have suggested I think I will look at Thyroid forum and get more information. I just don't think GPs put connections together and always leave symptoms until they are outside the range when it might be better to investigate further. Thank you for your reply.

  • Have you had a good look at the website for Thyroid UK testing I posted for you above ? You need FULL testing - TSH - FT4 - FT3 and the Thyroid Anti-bodies Anti-TPO and Anti-Tg. The anti-bodies need testing to rule out Hashimotos. Healthy people have a TSH of around 2 or under. Testing for anti-bodies will secure a diagnosis if positive and I can then provide you with the correct information to show your GP. They really are pretty hopeless when it comes to thyroid issues as well as B12/PA.

    We have to take control to enjoy good health :-)

  • Hi Marz, my GP refused further testing, I was only just within range. Just the standard testing. She said nothing wrong with thyroid. I will go back in a couple of months and have full bloods done again and may suggest I have the thyroid done privately if she refuses again. Gps get very annoyed when you challenge them. She has upset me so much I really don't want to go near her and to be honest changing gps not good idea for me. Little confidence in any of them when it comes to b12 thyroid or similar issues. I have started some months ago using organic milk and yogurt, feel I will get iodine through these and a multi vitamin weekly containing iodine. I will broach the thyroid issue with her again. Thank you so much for information and follow up. Without the advice, information and support on this site I would feel totally lost. Thanks again. Best wishes

  • If you thyroid anti-bodies - aka Hashimotos - then extra iodine is not always good. So it would be good to know how you stand. Also important to test for iodine before adding in extra ....

    Even if your Doc ticks all the boxes for your thyroid tests - it is more than possible that if your TSH is in range the lab will not test the FT4 - FT3 and Anti-bodies TPO & Tg. Sad but true ....

  • Hi Marz, thank you for the information about iodine. As I said I use organic milk and yogurt, romaine lettuce and dark green vegetables, and the only iodine supplement is part of multi vitamin once weekly 150mcg. That is 100% daily dose. I am trying to do the right things to improve my thyroid markings so hope I am not overdoing it. I will also try and get thyroid tested again soon. Thank you so much again, I really appreciate the support. Best wishes.

  • I doubt you will get the required tests done so hope you have made a note of the link above about Private Testing through Thyroid UK .....

    Hope all goes well.

  • Thank you Marz, I have taken a note and will look into private testing. Unfortunately my gp would blow a gasket if I broached this with her. With most of these issues you have to go it alone. I hope you are well and thank you again. Best wishes.

  • Once you have seen what the NHS allows you can justify private testing. An hour on Thyroid UK forum will soon have you aware of how lacking the NHS is 😊

    I am really well - looking after my own health which is much easier here in Crete !!

  • So you have 3 injections a week since December.

    Yes I think it's too much you should stick to 1 per week until no further improvements then cut down to possibly 1 every 2 weeks.

    I had problems when having 3 per week, palpitations, tight chest, fast heart rate, fluttering, amongst many more problems. I cut down to 1 a week for 9-10 weeks and felt much better. It was too much B12 which caused all those symptoms, you need to introduce it slower. I now have 1 every 2 weeks. You should be also supplementing with Folic Acid daily about 400ug.

    Also get your Vit D tested and Iron levels.

    Are you in UK ?

    Are you injecting Hydroxocobalamin ?

  • Hi Ryan thank you for your reply. Yes I am in the U.K. and inject with Hydroxocoblamin. I saw a consultant neurologist last November who recommended 1 injection each week but I knew the NICE recommendations said every other day until no further improvement. I was just glad to have something in writing from neurologist as my GP would have had me on 1 injection 3 monthly. Self injecting the further 2 times weekly. After injection I get a little relief from the cotton wool feeling in feet and toes so much I can wriggly my toes but it flares up again within a short time and thy feel stuffed with cotton wool again and I can barely move my toes or feel soles of feet. also the banding in my ankles get tighter. I know what you mean about thinking you are getting too much b12 also. The day after my injection I feel awful, the next day less so. I had been trying over the last number of weeks to cut down to 2 each week but I have been feeling I am getting worse so was going back to 3. Just don't know what to do for the best. Some people have three weekly injections and take sublingual as well. After 6 months with so many injections I had hoped to feel more improvement. My vitamin D was 60 not sure about iron numbers, folate had been 8 but now up to 12. Eating lots of leafy green vegetables and potassium rich foods. I also take multi vitamin couple of times a week. I think I have been deficient for a considerable time and afraid the nerves won't repair although the consultant said it takes time for the nerves to repair. I am very concerned that as I said I haven't had more improvement. and could actually get worse. It is a difficult one. I don't know what to do any more to get better. Thank you again for reply I hope you continue to make good recovery.

  • Hi potter5, I describe my foot problem as them being as if they were blocks of felt. This is something I have had for several years now and had changes to hypertension medication as this has been listed as a side effect on their literature. The felt toes didn't really go away so I was resigned to them.

    Now I know of another possible cause, and for the tinnitus, sore tongue, mouth corner break outs, electric shocks and nerve pains I have started firstly bi-weekly injections and latterly 1 weekly. My toes now feel like they are mine, my fingers are more supple and the tinnitus is quieter. Red wine still tastes like diluted dog dung, but I can drink white wines now and the odd larger. I took up playing a piano and electronic organ again just over a year ago, thinking the finger and feet exercise would be helpful only to find I was limited by the limbs and digits being less flexible and responsive - not any more - I will never play the Minute Waltz or the Flight of the Bumblebee again but Rustle of Spring and the Bach Toccata and Fugue feel well within capability.

    I am walking much faster and for longer so I think the treatment is working. I do have concern about needing more injections but also find the odd evening when my feet are tingling and twitching can be controlled with a bowl of hot water. I also wear bamboo socks and find they are very helpful as they are so soft and silky and don't cause the feet to sweat.

    This is a voyage of discovery and any gain, however small, is making life more enjoyable. We had a couple of weeks in Canada in July/August and by injecting the day before we went I was fine, apart from a bad evening in the middle, but a hot bath sorted that, and the return of the tingling and twitching in my feet on the way back gave me something to think about other than a cramped backside in the Air Canada Rouge Economy cattletruck seats. (Every cloud and it's silver lining and all that.)

    We can also say that wherever there is a winge there is life: if your feet hurt then you know you are still here.

  • Hi kcbrecks, thank you for your reply. I am glad your weekly injections are beginning to improve your condition. Some people describe their sensations as cotton wool, marshmallow feeling, or felt like, or dead feet. It is very distressing and the thought of no improvement or progressively getting worse is very worrying. I am always trying to put connections together and after some research had been on a gluten free diet for some months,then during the summer I bought alcohol free and sugar free beer. Bad move, should have had a glass of wine, my cramps got so severe my toes turned up, as did my ankles and the pain also in calf muscle was excruciating. I realised there was gluten in the beer and that was put to the side. I started magnesium maleate and had no further major crampingJ until last week when I had gluten in my diet over a few days and also a couple of glasses of the same non alcohol beers, and again the excruciating spasms. I realise now gluten aggravates my damaged nerves and will continue with gluten free. I still have my b12 injections twice weekly. After three days my symptoms flare up. When I go on holiday my b12 serum, needles and syringes travel with me. You are right about comfortable socks and keeping your feet in good order. With this condition it is day at a time as symptoms change by the day. I hope you continue to make good progress. Kind regards.

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