Has anyone ever been to the doctors knowing something isn't right and you're always tired? I've had several blood tests taken and although my vitamins levels come back low my doctor keeps insisting that my fatigue is caused by depression, and wants to put me on anti-depressants but I always refuse. Are there any questions/answers or tests I could do that would change my doctors mind to taking my concerns about suffering from vitamin deficiencies?
B12 Misdiagnosed as Depression. - Pernicious Anaemi...
B12 Misdiagnosed as Depression.
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Cubies
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I've been offered alot of antidepressants also. Infact she at one point got obsessed by raising my serotonin levels. Saying good for brain and headaches I tried amitriptyline and hrt. For 3 weeks each.
Sertraline I've actually paid and got it twice. Never taken it .
With my head pain I think I appear down. I am. I am not depressed though otherwise I would take a Turkey to Arlo me. Anxiety apparently is causing f ot if problems .
I'm open minded . I di get anxiety at times but it's not the cause of symptoms. Sympto s cause it ad scary at times.
I asked about ferritin levels and shaking ess ect. She said to take iron but my ferritin was fi e. It wasnt as when I finally managed to raise levels the shaking stopped!!
Its si difficult as if you at tild enough to.ed you ate depressed tou csn then question it too much.
You know. I know. Iexokain that when I get a chink of well being I'm bright as a button.
She stopped but ladt time I saw her she said duloxatine as can help nerve pain.
I'm not on anything apart from painkillers at times of need.
Doctors are not trained in vitamins.
When I raised my vit d it helped. She actually said I don't need to take any vitamins .I replied hats how I got so ill as nobody mentioned ed tou could get a sorbtion problems post menopause. It's quite common. I also asked as a risk factor why is b12 not tested at 50 + health check.
She didnt answer
I've also said ti het if I understand what's actually happening and get a diagnosis I would try another pill.
Si far b12 is the only thing that's helped.
So just ask for the bloods you want and supplement by results.
I'm so weary of Gps now.
I asked her why she thought I git I'll
She said it was dietry and I should take b12 tablets and reduce I jections
I cant absorb tablets. Im not taking any now simply si the nurse can put on my notes I feel no different on of off them.
I si wish that on 2 occasions I said I was too tired they did the right blood tests including b12.
They didnt .
It's actually patronising to keep saying g we are depressed. We should know.
Sertraline is really pushed. But I know ad with other drugs not si easy to stop.
You know tour body. So I wouldn't eadye your breath. Just get the bloods you need.
How did the b12 injections make you feel afterwards?
I’m just half way through the loading doses of B12 and feel worse sometimes, however many on here say that this is often the case early on in treatment
Hi Cubies.
Apparently B12 levels include active and inactive.
Just wondering if :
1. You have asked to be referred to a neurologist and / or haematologist ? It seems a lot of GP’s don’t understand PA and the routes to its diagnosis. Mine I believe missed it for years. Depression / Fibromyalgia !
2. you have seen the PAS ‘flow chart’ for PA diagnosis and blood tests to request including :
IFBA - Intrinsic Factor Anitibodies
MMA - Plasma Metgylmalonic Acid
tHcy - Plasma Total Homocysteine
Holo TC - Serum Holotranscobalamin
PCAB - Parietal Cell Antibodies
Although you may have to get these via the Neurologist or haematologist - my GP‘s didn’t understand these.
Not sure how to convince you Dr but I was tried on 3 different types before refusing to take anymore as they didn't work!
He then did a FBC & said I have PA.
Been fine since self injecting every other day for 14 months.
Good luck 👍
What is a FBC and how did you manage to get the test?
It's a full blood count.
After a couple of days of having it, my Dr asked me to come to see him as he had the results. He said my B12 was 124 if I remember right. That I had low folate, PA & Macrocytic Anemia.
I'm gonna ask my doctor about a inactive/active b12 blood test and to check my folate levels. Would this be a good starting position?
I believe you would need to ask for an active B12 test
Yeah I've been thinking about asking for an active b12 blood test after I stop taking supplements for 4-6 weeks for more accurate results. Apparently those it can be limited as referrals otherwise I'll have to go private either with an online self test kit or by booking an appointment.
Good luck
Hi,
"Has anyone ever been to the doctors knowing something isn't right and you're always tired? "
You're describing me...
I knew something was wrong for years, tired all the time, mild neuro symptoms such as tingling that spread and got worse over time, new more severe neuro symptoms started, my brain started to fail me and much more.
I was told continually that it was depression, tried various antidepressants none of which worked. When I persistently insisted on other tests and referrals to specialists and asked about conditions that matched my symptoms, I was told it was hypochondria, MUPS (medically unexplained symptoms) , psychosomatic symptoms, that depression was causing my physical symptoms etc.
Further persistence led to diagnosis of ME/CFS, fibromyalgia even though I kept asking about the possibility of B12 deficiency.
It's quite common for people with B12 deficiency to get a ME/CFS/Fibro diagnosis.
martynhooper.com/2018/02/10...
b12deficiency.info/misdiagn...
I became my own medical detective, got all my blood results and saw I had had below range B12 in the past; a light bulb moment.
I researched B12 deficiency from various causes eg PA, Coeliac etc. Looked at PAS website, read B12 books and spent hours searching for info.
Everything fitted, found studies/research that linked virtually all my symptoms to B12 deficiency.
I insisted on being tested for PA and Coeliac but results were negative. Didn't know until later on that PA tests are often unreliable and GP did not do both recommended Coeliac tests or tell me to eat plenty of gluten before test. I went gluten free and that led to some improvement; IBS symptoms disappeared.
Tried for a couple of years to get GPs to trial me with B12 injections, pointed out I had not been treated according to guidelines when I'd had low B12 result years ago, pointed out my symptoms matched B12 deficiency and that other possible causes of symptoms had been excluded by other tests.
GPs wouldn't listen as all my more recent B12 tests were well within range.
I made the decision to treat myself when I realised I was getting nowhere with NHS and that I was headed for dementia and spinal damage if I didn't get treatment (already had dementia type symptoms and pins and needles in my spine).
It took months of treatment to see changes but I'd been ill for well over 10 years and I suspect some permanent damage. I eventually found a GP who listened , actually read my medical history and the info from PAS and UK guidelines and agreed to treat me. I need far more B12 than is recommended in UK guidelines though.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
If you're in UK, I suggest reading document below.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
I wrote a very detailed reply on another forum thread which has links to other B12 books, other B12 websites, symptoms lists, UK B12 documents and other B12 info.
healthunlocked.com/pasoc/po...
I'm sure you'll find some useful info in it.
I am not medically trained.
You really are a self medicating detective Would you mind if I get another blood test to run the results past you? Also if my b12 and other vitamins are within "normal" range whatever that means, are there any other tests that might show low results?
I suggest you add your blood results to your original post or start a new post with them.
Take care not to include any details that might identify you or your doctors.
If you get copies of all your blood test results then you should be able to see the reference range for each test result.
For example in UK, a typical ref range for serum B12 would be 180 - 1000 ng/L.
The reference range will usually be next to the actual result eg
Serum B12 140 ng/L ( 180 - 1000 ng/L)
Sometimes the laboratory that did the tests will highlight results that are above or below range eg they might write Low (L) or High (H) next to the results or highlight them with an asterisk or in a different colour etc.
Do you mind me asking which country you are in?
The reason I am asking is that patterns of treatment for B12 deficiency vary between countries and sometimes the type of b12 used varies. Also the units of measurement and reference ranges will vary between countries.
I'm in UK so some of the info I refer to is specific to UK but hopefully still of interest to forum members not in UK.
An important lesson
One very important lesson I learnt was that when the GP, GP surgery or specialist doctor says all the results are "normal" that's not necessarily true. Always get copies and check for yourself.
I found abnormal and borderline results on mor ethan one occasion after being told everything was normal/no action.
Even if all blood results are "normal range", if they are all at the bottom of range or all at the top of the range or a mixture of top and bottom of ranges, that could be significant.
More B12 websites
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Access to Blood test results (England)
nhs.uk/using-the-nhs/about-...
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
Symptoms of peripheral neuropathy (PN)
nhs.uk/conditions/periphera...
Peripheral neuropathy (damage to peripheral nerves is often associated with B12 deficiency.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
If you're in UK, has GP followed guidelines below?
NICE guidelines Coeliac Disease (UK document)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Any chance of H Pylori infection?
patient.info/digestive-heal...
NICE guidelines H Pylori (UK document)
pathways.nice.org.uk/pathwa...
Click on boxes in flowchart for more info at right of page.
Any exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw or uncooked fish eg sushi, smoked salmon? There are other parasites associated with B12 deficiency in humans eg other tapeworms , Giardia Lamblia and others.
Diet
Has your doctor asked you questions about your diet?
Do you eat plenty of b12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?
If yes to b12 rich diet then diet as a cause is less likely and it's more likely that there is an absorption problem in the gut eg PA, Coeliac, H pylori , Crohns disease etc.
Might be worth writing out a typical weekly diet; food and drinks so GP can see whether or not you are eating plenty of B12 rich food.
PA (Pernicious Anaemia) tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
UK B12 documents
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
BNF Children
bnfc.nice.org.uk/drug/hydro...
NICE CKS
cks.nice.org.uk/anaemia-b12...
If you're not in UK, perhaps you can track down national or regional documents for treatment/diagnosis of B12 deficiency?
Next link includes links to support in several countries and a Facebook B12 group.
Oh yes!!! I had undiagnosed P.A. for decades, and during that time almost every doc that I saw said that there was nothing physically wrong with me - take these antidepressants, they'll make all of the symptoms go away. It got to the point where I dreaded going to the Doc, because I knew what they would say. I went in with an ear infection once, and it was so painful when the doc examined it, that it made my eyes water. There - you're crying, you're depressed!!!! What?!?!?! He even gave me the details of a mindfullness tutor to make me feel all better.
I found my vit D levels were off the bottom of the scale, and folate was off the top (Due to supplementing for years with no B12, so it built up.) Once I'd got those two back in normal range, I felt a lot better.
You've reminded me I need to add checking my folate levels to my to-do list before seeing my local GP. I'm really pleased you're starting to feel normal and hopefully I'll be joining you soon.
I have a history of "depression" going back 50 years. Ten years ago I was diagnosed bipolar disorder type 2 - this is where long months of depression are interrupted by perhaps 6 months of hypomania - no psychosis but very active and creative times. The last episode of depression lasted for 3 years and my psychiatrist and I decided that none of the many medications we tried were helping so we stopped them all. I have been self injecting into a muscle now every other day for 6 weeks - the depression has lifted more and more as well as many other neurological symptoms such as psoriasis, intense pain, bleeding gums, ataxia, memory loss, poor mental processes of all kinds etc. etc.
I believe that this incorrect diagnosis of depression has ruined my life. Had I been diagnosed with PA much earlier I would have had a much happier and fulfilling life.
CherylclaireForum Support
Yes- I was offered antidepressants quite often in the beginning. I told the GP that in the end, this would become a self-fulfilling prophesy, because it is quite depressing constantly being told you are depressed when you aren't !
I started to think that this might be go-to diagnosis for post-menopausal women presenting with almost anything "difficult". How to prove to GP that you do not have depression ? That's the really difficult bit.
Serum B12 - Is it low or low-range ?
Have ferritin, folate, vitamin D and thyroid also been checked ?
Quite often ferritin, folate and vitamin D are low/ low-range if B12 deficient - unless supplementing. Thyroid can struggle - GPs generally test TSH and T4 only. Full-panel thyroid test, including antibody tests, might give a broader picture - but privately available only, I think. Can be done by post with online results.
It is entirely possible to have depression as part of B12 deficiency - for instance as one aspect of "mood swings". It is also entirely to have depression as a result of feeling low in energy and isolated or unemployed because of B12 deficiency. It is also possible to have depression that coincidentally occurs separately but at the same time as B12 deficiency- but way less likely.
Other tests: usually only offered if B12 deficiency/ PA suspected or serum B12 low result:
IFab : anti-Intrinsic Factor antibody test, used to test for PA specifically - but will give false negatives 40-60% of the time (a positive result is 95% accurate for PA - keep a copy !)
Parietal Cell antibody test: testing for autoimmune atrophic gastritis (atrophic gastritis can also be caused by Helicobacter pylori) - can show a false positive (positive in 80% of PA subjects but also 10% of "normal" people)
MMA (methylmalonic acid) test: A reliable second-line test. MMA links to B12 in system so if MMA very high, it is likely that B12 very low- so link not occurring (laywoman's explanation). This should return to normal levels soon after B12 levels replete, so not useful after B12 injections administered ( unless a functional problem suspected at cell level). High MMA can also be due to renal problems or small intestine bacterial overgrowth (SIBO) - both of which can be tested for and ruled out as cause. Not usually available at local labs and results very high to be acknowledged as functional problem.
Homocysteine test: Another second-line test. Not thought to be as specific as MMA test.
Holotranscobalamin (HoloTC or active B12 )test: differentiates between the active and inactive(holohaptocorrin) B12 in bloodstream. Can't however differentiate between the active B12 introduced by injection and that which is occurring naturally in system - so no use once B12 injections administered.
All of these are available on the NHS. I have had all of these, some more than once, some many times. My GP got an MMA test requested (with difficulty) - but in the main these tests are secondary and ordered by consultants.
Be aware that you could still end up, years later, with no useful conclusion, or conflict of opinion between specialists: wouldn't want you to get depressed !
I hope this helps you. This information, and much more, can be accessed in Martyn Hooper's latest book: What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency.
Thank you very much for this. I think my next plan is to start writing down all the available test that my GP can either have a nurse do or as a referral somewhere else. Then I'll start collecting information. I'll come back with figures and numbers. (Although I've been self medicating with large amount of vitamins so I've been told to stop taking them 4 to 6 weeks prior to any blood tests.)
If your GP won't order the tests you think you need, you could get them done privately.
In UK, NHS GPs often won't accept private blood test results but if the private tests show an obvious problem it might persuade GP to order the test themselves.
Another way to get tests is to get a referral to a specialist doctor and hope they order the necessary tests.
NICE CKS link in my other post suggests GP should contact a haematologist for advice if patient has b12 deficiency with neuro symptoms.
If you have neuro symptoms then GP should refer you to a neurologist.
If gut symptoms present then worth asking for referral to gastro enterologist.
NHS is cash strapped so GPs are often reluctant to refer....you may need to build up a lot of evidence and refer them to national guidelines/documents to get referrals.
In UK and I think in other countries as well, there is no guarantee that seeing a specialist or going private will lead to better treatment.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
There's a lot of useful B12 info in above link so suggest reading it thoroughly; some info in link is UK specific.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic with an in range serum b12 result.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Warnings
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some UK GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
nhs.uk/common-health-questi...
"I've been self medicating with large amount of vitamins so I've been told to stop taking them 4 to 6 weeks prior to any blood tests."
It's possible that some test results may still be affected by prior supplementation even after several weeks without.
B12 deficiency and Mental Health
b12deficiency.info/b12-and-...
martynhooper.com/2017/01/22...
Next link has upsetting details.
I have had the same problem for many years , I wake up with a hangover even though I haven't drank , bumping into walls and stumbling when walking , mind fog , had to quit my job 2012 still feeling the after affects now but just started self injecting , I was shaking all over and couldn't lift a cup of tea that was 3 days ago but the b12 has cured it , I have pernicious anaemia which is alot different from a b12 difficiency as the blood cells that carry the oxygen are misshaped like a figure 8 than a circle anyhow thanks to the guy who gave us the supplies for hydroxocobalamin it really is a life saver and best to everyone here.
I've had the same problem in USA. So many physicians are not curious enough to investigate. I was told by my last hematologist that I needed to seek psychiatric help and there was nothing he could do for me. Thankfully the next one has a nurse practitioner that is actually interested in the pernicious anemia issue and is open to a deep dive of what I tell her I am feeling. Too many physicians only operate within the small box of their comfort zone. And the patients suffer because of their lack of knowledge or compassion. The best piece of advice I ever received in my training was "Listen to your patient" I always made that a major point to all of my staff.
What do you do for a living? What are the next steps with the nurse practitioner?
Well, nowadays if I work at all, I work as a musician. But after training as a music major many years ago I discovered that I was not likely to make a living as a rock star, so I went to school for nuclear medicine technology and later in ultrasound. Did 20 years of clinical work, then 20 more years as a radiology practice administrator, then retired after a stroke almost 5 years ago. I figured it was a sign I didn't need to be working 70 hrs a week and traveling all over the country any longer. Testing for PA using radioactive cobalt was a big part of nuclear medicine back in the day.
The NP I am working with now has given me iron infusions and I am scheduled to have follow-up labs in a couple weeks to see if my H&H have improved or not. More visits to ophthalmologist and endocrinologist coming up also. I have multiple co-morbidities so it gets complicated.
Would it be okay if I ran my test results across you? You seem very experienced and intelligent. I'm not wanting to not constantly want to lie down all the time. I wake up feeling tired.
Cubies. Just so you are aware...we do not recommend emailing individual members for advice...and there's a very good reason for this: the safeguarding of both those who give and those who receive advice.
Information and advice exchanged in the main forum is open to scrutiny and challenge (as it should be) and this is what helps to safeguard everyone - if anything is inaccurate or inappropriate, there's an opportunity for others to raise questions - this acts as a good safeguarding mechanism for all concerned. Another advantage of posting in the main forum is that it allows access to a support from a wide range of members (some of whom are very knowledgable).
Also - on another note - if you have been taking B12 supplements and intend having further blood tests (serum B12, active B12 etc) it's recommended that supplements are stopped 3-6 months prior to further testing. For some, it takes even longer for blood levels to revert to a pre-supplement level. So, waiting a few weeks before testing may not have the intended effect.
Really sorry for all the problems you’re having. Unfortunately not unusual, as you'll see from the responses to your post. Hope all the advice helps and that you manage to find some solutions...GP's can be quite tough to deal with, so hope things go well for you 👍.
can I just give some advice that if you have a b12 deficiency it's alot different and easier to treat than having pernicious anemia which is lifelong , get a blood test and know the difference , lots of people have low b12 but that is not the same as pernicious , just to make it clear.
Yes I understand, but this is the only place I can come to for advice.
There are other causes of b12 deficiency that require lifelong treatment besides PA eg patients who have permanent damage to their terminal ileum.
Terminal ileum is where B12 absorption in gut takes place.
I've got a diagnosis of b12 deficiency. It's not been easy to treat at all. I think if caused by diet it csn be turned round.
I was told it would be easy but I'm still struggling
I started by taking huge dosages of b12 supplements (prescription) while I was homeless for about three months. This has helped the most in my recovery, yet here I am feeling better but still waking up wanting to fall back asleep. Even while I'm sat right up typing this message my body keeps sending me signals to lie down and rest. If I do I'll get comfortable and sleep, but then I won't be able to sleep at night time.
Yes your cycle can get mucked up. I take supplements in the morning.
I was initially bedbound but tried to stay sitting up in the day.sometimes couldnt lay down as head pain or dizziness wouldnt allow it.
If you fall asleep in the day try and keep it to an hour .
I'm still going to bed by 6pm as light sensitive . So try and stay awake until at least 8 as then awake from 4.
I'm appreciating being able to sleep without pains almost the time in my head or skull. Ot other horrid symptoms.
Rest is healing.
I'm sure you can work on your sleep cycle. Do get enough though. Even if its yo to 12 hours so your body can heal.
well this is a great place to learn and hear the truth from people who are suffering and trying to get help whether self injecting or not it's hard , in my opinion you really need a doctor to look at your blood cells ie a full blood count , don't be scared to ask for one because it is your right as a person to know exactly what is going on , they then will tell look at your blood cells and tell you if it's P.A if not then maybe low b12 which is better ! my p.a was caught by accident and god knows how many years I had it for , they don't usually screen for P.A or low b12 so checking and asking is key , from a person with P.A since 2012 .
I think I'd ask for a blood test to check thyroid hormones. It is a pity that doctors only test the TSH and T4 and these aren't informative on their own. You can however get a 'home' bood test and I'll give you a link just in case you want to follow up yourself..
I think a blood test of your thyroid hormones would be worthwhile as that would consist of "T4, T3, Free T4, Free T3 and thyroid antibodies. Also request B12, Vit D, iron, ferritin and folate.
All blood tests should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from last dose of hormones (if you've been diagnosed and prescribed levothyroxine).
Post results on a new post for comments and ensure the ranges are also quoted as it helps members to respond.
I myself remained undiagnosed due to inept doctors but they didn't return the money I paid them and there was not any explanation to what was on a barium swallow as they told me it was a 'web' that I'd choke to death if not removed.
Just in case GP refuses you can get a private test and be well-hydrated a couple of days before blood draw:-
TSH, T4, T3, FT4, FT3 ,.GP should test B12, Vit D, iron, ferritin and flate.
Post results in a new post for comments and also the ranges of the tests.
CherylclaireForum Support
Whether you have Pernicious Anaemia or undiagnosed Pernicious Anaemia or B12 deficiency or functional B12 deficiency, you will probably feel roughly the same ( ie: rough )!
This is because the thing that makes you feel so ill is the lack of B12.
Some people, like Bellabab above, have had to wait for many, many years to get a correct diagnosis of PA. Some people, then, we must assume, will never get their diagnosis . They don't suffer less than those who do. Ask Bellabab if s/he felt worse the day after that long-awaited PA diagnosis.
If you have B12 deficiency due to a dietary cause, it is perhaps possible to rectify things by taking tablets alone if it hasn't been going on for too long - but it is likely that by the time anyone has noticed that you are B12 deficient, at the very least you will need loading injections. It still could be a long way back.
The problems with lack of diagnoses and misdiagnoses is a huge one.
If PA was just about enlarged red blood cells (macrocytosis), then there would be no problems at all, since a simple FBC (Full Blood Count) would suffice. This includes an MCV (mean corpuscular volume) which measures red blood cells. Easy then to tell macrocytosis (indicating PA) from microcytosis (indicating iron deficiency)- unless of course you have both !
Another problem is that only about 60% of those with PA will have macrocytosis anyway .
In fact in one recent study*, only 5% of patients with low B12 and low folate had macrocytic anaemia: which would mean then that 95% did not have PA -if this was a reliable indicator.
So maybe that "low B12" (considered better by Davy28 ) is just undiagnosed PA after all.
All those currently in limbo know how difficult this situation can be.
Let's look to support each other at whatever stage we happen to find ourselves.
* See video of Pernicious Anaemia Conference 2019 - available to PAS members on website.
I was told I had depression for 15 years. Before I let myself down by loosing it at doctor. Rattled of everything that was wrong. And he finally said oh it might be B12. Sure enough Sent for Shilling test. Consultant was shocked at how bad the result was. Because i was getting paralysis etc. He said I was so lucky I lost it with doc.
I also used the diagnostic sheet from the site to get docs to check my mum. Who no surprise has it too. Her doc asked where I got sheet. He asked me to drop of a blank copy for surgery use..
Yeah my doctor tested my b12 which were "really low" and I was on prescription supplements for approximately three months while homeless. Then I couldn't take anymore when my results came back as "normal". They've helped me a lot almost 50% recovery but I'm still waking up very tired and sleepy. So I'm gonna have to keep going back to the doctor I've been sick for too long now.
As your doc is at least showing some interest, perhaps they would be interested in ...
1)Section on PAS website for health professionals. It is free for your GP to join PAS as an associate member.
pernicious-anaemia-society....
2) PAS library section with useful leaflets. If you join PAS you could print these out for GP.
pernicious-anaemia-society....
3) I gave one set of GPs a copy of Martyn Hooper's book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info so you may need to include a note about this with book.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
Yes I gave them my copy of the book to read. But doc that wanted it has left now. I moved house and new surgery a waste of time. After a fight they agreed to 8 wkly injections. So I self inject. New surgery said PA Society untrust worthy. Need to listen yo them. Told them they were nuts.
Hi Cubies
It is not uncommon to be told you are depressed. My true diagnosis of PA took years but I always resisted the antidepressants despite the constant pushing. I knew there was a problem but it wasn’t until I had suffered for ages and then accidentally came upon an article about B12 deficiency and asked for a test that I got the real answer. GP did the test to humour me. It is enough to make you depressed that this pushing of antidepressants continues before they rule out other medical issues.
They may help some but they can also muddy the water and mean you never get a true diagnosis .
Hang in there and if you really are sure there is a physical reason for your fatigue then seek other tests first. Beware being labelled with chronic fatigue as the guidelines for that seem to tell GPs not to test for B12. Ridiculous.
Good luck.
Yeah. Been there done that. Took about 18-24 months. Been on fluoxetine for bout 10 years anyway but I also now have B12 injections
How do the injections make you feel now?
I have them every 12 weeks and I normally start to feel crap and exhausted about week 9. Oh and they really hurt
How do you feel before week 9?
Hi AngelSarah1980
If you're in UK, check that the GP has put you on the right treatment pattern for B12 deficiency.
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
If patient has neurological symptoms, my understanding is that they should be on second treatment pattern.
Both treatment patterns allow for jabs every 2 months.
Have a look at my other posts on this thread for more info.
Ask the Dr. to check for PA. There are times when one must be direct. It's your health and welfare .
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