Pernicious Anaemia Society

Worsening symptoms- I’m so scared!

Hi everyone, i had my loading doses 5 weeks ago and have not really noticed any benefits since Fridayl last week I feel my symptoms have worsened especially the visual disturbance, loss of balance, lightheaded also had a feeling that my legs won’t work Yesterday and today I have really struggled walking and have had panic attacks both days, I am incredibly anxious so not sure whether the anxiety is causing walking problems. As of Friday last week I also have pins and needles/ burning in the tips of some of my fingers on both hands which my doctor diagnosed as carpal tunnel, do you think though this could be the b12 deficiency and not carpal tunnel at all? Not sure whether I’m imagining it but think I have the numbness in my big toes too. I have read that symptoms can worsen as the b12 starts to heal nerves, do you think this could be what’s happening. I did have a b12 injection today so not sure whether that has made symptoms worse today Anyone else experienced this, I’m so scared by what’s happening to me. Any responses greatly received.

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Hi EJG79 ! wrote to you two days ago saying that "it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly".

What you are experiencing could actually be taken as a "good sign" and worrying about it is not doing you any favours. Have you spoken with your doctor?

I wish you well and hope you start to feel better soon.

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Hi Clivealive, thanks for your response again. I have spoken to my local doctor who now thinks maybe it isn’t b12 she is sending me to an ear, nose and throat specialist to see if it’s my ears that are causing the vision problems, unsteady feeling and slight dizziness. She said my levels weren’t that low anyway and I am not anaemic. Beginning to wonder whether actually my problem is anxiety as that was the first symptom I noticed. I’ve suffered with anxiety for many years but with different symptoms. Do you think this could all just be anxiety? I have been stressing a lot just lately over everything and am just so concerned that I am developing new symptoms each day at the moment as I did not have the tingling in my feet and toes or the feeling that my legs won’t work until the beginning of the week.

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I'm not a medically trained person so I cannot "go against" what your doctor is saying about the ENT appointment.

However ideally, according to the N.I.C.E, guidelines, if you still have neurological symptoms the loading doses should have continued until there was no further improvement.

Did you feel any benefit from the B12 loading doses and is your next scheduled January injection still going to be given?

Are you able to check what your Folate level is?

Anxiety and stress may well "use up" B12 but there are many other causes like poor diet, medications, other autoimmune diseases like Hashimoto's, diabetes etc.

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No benefit as of yet from the b12 injections Clivealive just seem to be getting worse. The doctor will still give me the injection in January. I have been seeing a private doctor too who has agreed to give me monthly injections. I also started on Citalopram yesterday which I know can heighten anxiety to begin with and will take time to take effect. Are folate levels tested in routine blood tests? Back in October they tested me for B12, Full blood count, liver function and I think thyroid. All came back fine apart from b12.

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Clivealive can you get symptoms that you didn’t have before when treatment starts or is that unusual?

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Do you know I've never thought about that before but I wouldn't be in the least bit surprised.

A B12 deficiency damages the myelin sheath at the end of the nerves so when that gets repaired by the B12 it may well trigger some "re-awakening" of feelings in places we'd forgotten about.

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Do you have any "new ones" from the above?

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Yes unfortunately I do. I think that I have had this for quite some time and now my symptoms are maybe permanent and will continue to worsen I guess? I fear the future may be bleak for me

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Whoa whoa! It's still "early days" yet.

I cannot now remember how long it took for me to see any improvement once injections started 46 years ago but before that I was a "walking Zombie" and it was 13 years since I'd had major surgery to remove two thirds of my stomach at the age of 17 - so you can imagine how low my "store" of B12 had got.

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Thanks Clivealive for your response. I just wish I could see a bit of an improvement rather than feeling worse now than I did before.

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Hey do not loose hope.. When u feel ur first neurological symptom.. I mean symptom (dizzy/off balnce) appear .. 6 mnths ago, 1 year ago or when?

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Hi Shalinee, I first started noticed july of this year also had disturbed vision and anxiety. I feel that i have lost some night vision do you have this? I also get pressure at the base of my skull and a tremor, pressure in my head. Have you had this Shalinee? But I have had anxiety issues about 12 years. I wonder if this has been coming on since then.

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Maybe it is bcz of anxiety.. Maybe b12 def.. U should also join anxiety forum.. U know i m also vry anxious nd really dont know whts happening wth me..

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U hv neurological symptoms.. Nd nerves healing is long process.. Be patient.. I hv same symptms lik urs (neurological) nd its almost 5 mnth past diagnosed ... But i feel still balnc prob/ dizzy-visual disturbnc.. But if ur dr. Suggest ENT go nd clear it out.. But i m sure this is all due to b12 low.

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Do u feel sometimes neck pain also ?

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Yes Shalinee I get neck pain at times. I think I am very tense all of the time at the moment. Do you get symptoms that are worse at night?

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Yeah.. In evening i feel bad.. Many negative thoughts at evening.. anxiety and b12 def sucks evrone s life... I m on Etilaam (anti-anxiety medicin)

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Had the medicine made any difference to your anxiety Shalinee?

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Not really.. Only feel little bit calm down.. I m stil sick vry anxious all the time... I also do yoga for anxiety ..i dnt know how much times take to feel normal..

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Btw my neurologist says ita take time almost 1 year to watch any improvmnt... I m on mnthly injection wth daily b12+ folic acid tablets.

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Anxiety is a horrible thing to experience without having b12 deficiency. Fingers crossed we both feel better very soon.

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I had anxiety past 5 years but not severe only light anxiety... b12 defcncy dgns 5 mnth ago.. B12 def makes anxiety worst.. Btw in February its my marriage.. Nd i m too anxious or ill to get mrry after 2 mnths... 😐

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Shalinee have you had tests to find out the extent of damage to your nerves?

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No.. But my neurologist is vry confident nd she said ..it takes time...

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I m. Too young ..nd i feel lik i m 80 years old.. 😁

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I feel for you, I do hope you feel better soon. 😘

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Tqq i will also pray for u.. 😊 btw u just go wth ur dr. Suggestion ENT.. Nd clear it out.. R u taking daily b12 tablets ? Or wht is ur shot time.. I mean mnthly or weekly?

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My local doctor is giving me another injection in January but I have gone to a private doctor and he has agreed to give me them monthly. Do you find your symptoms are worse at times than others? Today I feel better than yesterday and the trouble walking is better.

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Ya exact..i feel some times worse .. U need more injections... If dr. Giv u weekly it is the best.. My b12 was very low.. Nd in 5 mnths i take 21 or 22 injections wth daily b12 tablets but still i m nt well.. It takes time.. My b12 defcncy was late diagnosed almost 1½ years after symptoms apper.. So it takes time..

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Hi,

Sorry to hear things are hard for you.

"have had panic attacks both days, I am incredibly anxious"

B12 deficiency can have a strong influence on mental health.

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

"I have read that symptoms can worsen as the b12 starts to heal nerves"

Some of my symptoms worsened for a while eg tingling.

I believe you mentioned neuro symptoms on your other thread.

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

"doctor is giving me another injection in January"

"i had my loading doses 5 weeks ago"

It reads to me as if you are on standard UK B12 treatment eg 6 loading jabs over 2 weeks then a jab every 3 months. This is different and less intensive than the neurological treatment regime outlined above.

How many loading doses did you have?

My feeling is that in a person who has been B12 deficient for a long time, it may take a period of weeks even months to show signs of improvement (it did in my case). It may be hard to convince a GP to continue B12 loading jabs if improvement is not obvious fairly quickly.

UK b12 treatment info can be found in...

1) BSH Cobalamin and Folate Guidelines, quarter through guidelines

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

2) BNF (British national Formulary) Chapter 9 Section 1.2

GP will have access to copy of BNF.

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

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

B12 Deficiency Symptoms lists

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

Do you know why you are b12 deficient?

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Flowchart below indicates that in UK, people who are symptomatic for B12 deficiency should have an IFA (Intrinsic factor Antibody) test.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Have you had an IFA test? IFA test can help diagnose PA (Pernicious Anaemia) although it's not always reliable and it is possible to have PA even if IFA result is negative or normal range.

Some more links and book suggestions below about B12 deficiency.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

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

If you have PA or suspect PA, may be worth joining PAS. They can offer support and info about PA. There are PA support groups in UK .

pernicious-anaemia-society....

B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I think the above books mention anxiety linked to B12 deficiency.

BMJ B12 article

bmj.com/content/349/bmj.g5226

"they tested me for B12, Full blood count, liver function and I think thyroid. All came back fine apart from b12. "

Did you see all your actual results?

I learnt to always get copies of blood test results after being told everything was "normal" and then finding abnormal or borderline results on the copies.

nhs.uk/NHSEngland/thenhs/re...

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

nhs.uk/chq/Pages/2635.aspx?...

May be worth posting any Thyroid results on Thyroid UK forum on HU. GPs sometimes only order TSH test. Other thyroid tests are needed to give a full picture of thyroid function. Thyroid problems can sometimes influence mental health.

More B12 info in pinned posts on this forum.

I am not medically trained.

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Hi sleepy bunny, I had 6 loading doses 5 weeks ago. The private doctor checked my levels 3 weeks after and levels were at 1600. He has agreed to give me monthly injections. The tingling in my hands and feet have only started this week. Anxiety was my first symptom. She thinks it’s diet but I am an anxious person so maybe my stress levels have made my levels low. Do you know if you can still be absorbing b12 even if your levels are low? I’ve had no other tests to find out why my levels maybe low. Can I still heal with monthly injections?

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"Can I still heal with monthly injections? "

Everyone's response to treatment is very individual, some people are fine on a jab every 3 months but a lot of people on this forum seem to need more.

I am not medically trained but I am surprised that you are on the B12 standard treatment regime. Has your GP explained why you are not on neurological treatment regime for B12 deficiency?

You mentioned symptoms in your other post that would normally be considered as neurological eg loss of balance when walking, twitching in eye, tingling , feeling dizzy.... It's possible that GP is not aware that B12 deficient patients with neuro symptoms need the neurological treatment regime. GP may not have read this part of BNF, info is in Chapter 9 Section 1.2

My experience has been that some UK GPs are not as well-informed about B12 deficiency as they could be so I think it's helpful to do some homework on it in case GP hasn't.

I gave my GPs

1) A copy of PAS Symptoms checklist with all my symptoms ticked (link in post above)

2) Copy of BSH Cobalamin and Folate Guidelines (link above)

3) Copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

PAS website has a section for health professionals. Health professionals can join PAS as Associate Members for free. See link below.

pernicious-anaemia-society....

"She thinks it’s diet"

Are you a vegetarian or vegan? These types of diet can be a risk factor for B12 deficiency.

Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs? If yes then dietary B12 deficiency become less likely and an absorption problem becomes more likely.

Does your GP know what your typical weekly diet is? If you are eating lots of b12 rich food it might help to write your diet out for GP.

If she can see you are eating plenty of B12 rich food , she might consider the possibility of B12 absorption problems.

"I’ve had no other tests to find out why my levels maybe low."

I'm surprised you have not had an Intrinsic Factor Antibody test which can help diagnose PA but test is not always reliable. Still possible to have pA even if IFA result is negative or normal range.

If you think an absorption problem eg PA is a possibility then might be worth joining and talking to PAS (tel no in above post).

I am not medically trained.

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The private doctor didn’t seem to think that i needed more injections as my levels were at 1600. It was only that I asked for the monthly that he agreed to do it. Did you get new symptoms after your loading doses or just worsening of the symptoms you already had? If I go to a neurologist will they be able to tell the extent of my nerve damage from the b12 deficiency

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Hi EJG79....like you I am also very anxious but worse when I take b12 because it is a stimulant. My b12 has gone from 160 to 275 with me just taking a 1/4 of 1000mcg tablet. I also got pins and needles, more dizzy and loss of balance after taking it. You can get the same symptoms from having too much b12 or not having enough so you have to be careful. Google this..The side effects of too much b12 /LIVESTRONG.com. I'm just going to go slow and try and avoid nasty side effects. I don't know how low your b12 was and if you have PA or not, but you said the doctor said it was'nt very low and you are around 1600 now. For me personally I don't want to go 1000 Take care

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Hi Stayfocused, my levels were 185, Really hoping I start to see some improvement soon. I did have a shot on Friday and have started anxiety pills, hoping I will see improvement soon. Good luck to you, hope you feel better soon.

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Thanks EJG79.....I think I will have to take something too...my nerves are shot. The only thing is they can deplete your b12 and so can antacids as I found out when I had reflux, but your b12 is high so It won't be a problem. All the best

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Hi,

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Link about safety of high dose B12

stichtingb12tekort.nl/weten...

"Did you get new symptoms after your loading doses or just worsening of the symptoms you already had?"

For me it was worsening of symptoms I already had.

Do you think your original low B12 was due to diet? See my post above.

Have you ever been tested for Coeliac disease? This can lead to B12 deficiency as it can affect the gut.

coeliac.org.uk/coeliac-dise...

pathways.nice.org.uk/pathwa...

Do you have blood test results for folate, ferritin and full blood count (FBC)? It's important to have good levels of iron and folate .

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Hello EjG75 and others out there! I was very interested in comment about vision issues EJG75 mentioned. What exactly, is happening with your vision.? I've not seen any comments on vision since joining this forum many months ago and it was the one thing that caused me a great deal of anxiety as I thought on top of everything el

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Helo u r talking about vision then i also want to share tht my vision is really playng wth me.. Like i see movement in objects like when i concentrate

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Hi Ch52, Really hard to explain but I feel I have lost my night vision, sometimes it’s blurred when l look at things hard to focus, in my, sometimes it feels like I can feel my pupils dilating. I know that sounds weird. How was your vision affected? Is it o.k now?

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Ejg79 I was very scared also when my vision was distorted and it felt like I was going blind. I imagined the worse. My symptoms for night vision were awful even with my prescription glasses that had a coating to keep the glare down. It would blur out and I honestly would have to pull over and stop to rest my eyes and then could continue. I had areas of my vision that were like looking through water spots. After my blood transfusion (I had 7 units of whole blood then I was started on B12 injections and iron infusions via IV while in hospital. Following my release from hospital I was able to walk across the room without falling and extreme dizziness. I still had vision issues until all my loading doses of B12 were complete and my doctor is a specialized hemotologist/oncologist who also has PA and he has me in same schedule as he himself is on : which is B12 every 2 weeks. My water spots have gone totally away! I still have the black stringy floaters but they are way better than they were prior to treatment. To eliminate anything physical with my eyes I was sent to an eye surgeon and tested judiciously for everything they could think of . It was finally concluded that my severe Depletion of both B12 and iron was the cause. It was the one symptom that I was most frightened about. Falling, not being able to catch a breath, heart pounding out of my chest, migraines, my legs and arms not functioning and trembling constantly and feeling like I was dragging wooden arms and legs plus not being able to swallow food because my throats muscles quit working were nothing compared to the thought I might be going blind. I wasn't afraid to die I was terrified of being blind. Going to an eye surgeon and my internist and oncologist was best thing I did. It took away the anxiety and the rest I knew I could deal with. It's the unknown that is the worse enemy to my psyche. Over the past 7 months after we tried just using diet and iron tablets it was discovered that I not only have a B12 absorption issue but also cannot absorb iron through my gut so am back on iron infusions once a month. Today, my vision is back to almost normal and only occasionally have the black stringers and shadows. I still have night driving issues but think that's normal for my age group (65) years . My suggestion is to Make an appointment to see a good eye surgeon (ophthalmologist not an oncologist.) When eye surgeon has run all his tests have them shared with your GP and work it from there? Just know it took me 7 months of stepped up treatment to get to where I am today and everyone responds differently. My folate levels are only thing that seems to be running pretty normal onceI got my blood transfusions .

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Let me continue as I messed up my response: ...else I was going blind! I had what I can only describe as large areas of water spots on my eyes blurring section of my vision that would eventually clear. I was left with black stringy floaters which was very disconcerting! I was checked by an eye surgeon who said floaters were part of aging process but could also be due to my extreme B12 deficiency and also dehydration. My hematologist said it could be a B12 symptom but had never heard of this particular symptom. After 7 months of B12 and iron infusions the symptom of water spots went away but I still have occasional floaters which are pieces of protein that get trapped in the viscous liquid of your eye sack as the eye shrinks away from the walls of the socket and that has gradually gotten better also. Do t know if this is what you are experiencing but the thought of going blind freaked me out!

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The movement I would experience were like shadows in my peripheral vision as the spots or water droplet like things and stringers would float across my vision. I thought I was going bonkers and it was really bad after trying to concentrate on a book or while driving.

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Is it true late diagnos wth neurological symptoms cause permanent damage?? I diagnos b12 defcncy after 1½ year 😐

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Every case is different. I suffered a good year and probably longer with symptoms that I just kept pushing through and ignoring. My deficiency was so severe I was hospitalized within 2 hours upon getting a doctor appointment. I was not expected to live as my blood counts were dangerously low and was given emergency blood transfusions. I am feeling way better with only slight lingering symptoms like the pins and needles, burning in leg muscles, and stringers in my eyes and am more susceptible to heat and cold but I am looking at it in a positive way: if I can feel them I'm ALIVE!!! I'm a 65 years old woman and I'm still able to Cross country ski and cut down trees and blaze trails and live my life in the woods by myself with my dog and live a very rustic lifestyle without a lot of amenities. I am grateful for the ability to do this so will not fret the smaller issues that are still on going. Thinking positive has helped me a lot. Being frightened and scared kept me crippled. By not pursuing a doctor and treatment sooner because I was scared of what the outcome would be made things much worse for me. I wish you the best in your treatment and pray for your and others here that you can get your treatments and have improvement in your health where you are functional and happy despite a few lingering symptoms. This is a lifelong battle.

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Tq.. I m 22 year old female nd u r ryt i do nt loose hope.. 😊👍

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Don't get me wrong: We all have low points and scared moments but that's what this forum is all about! I'm alone in life but this has been a lifeline for me. I wish you well along with courage and always faith that eventually things will even out for you. This is a tough road to be on and a real balancing act to get all our numbers back to functioning levels. Plus the challenge of keeping them there!!! Best of luck to you!

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Sorry CH52 I’ve just seen the rest of your posts. Definitely feel like I have shadows in my vision sometimes too

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