in Sweden guidelines says if iron def, and if the diagnosis of b12 def is correct you will have lowered iron in four days after starting treatement as a proof of the b12 def diagnosis.
As I now after 4 months with eod injections have a decline in iron and got iron sub, as well as lowering mcv from 96 to 92, my doctors do not believe in my theory of having b12 def as an explanation pf my health issues.
Do anyone know any scientifique paper or article with time references? I just feel gasligthed.
I'm 4 years in and still baffled by these questions.
My HB and ferritin ect was okay when my first ever b12 was 106pg (200-900)
Diet unchanged . Meat fresh veg pulses diary the lot .
Got one Gp to believe not dietary!!
But triggered by the menopause .
Another gp said b12 level not that low??
To cause such symptoms.s ??
My ferritin and Iron level dropped ( not out of range)
Ferritin 29. But enough to give extra symptoms.
Took me over a yesr to get the level back to esr where I started.
61 level now 58.
Fir ne above 4o ferritin level gets rid of the extra symptoms.
Restless legs.
Shaking.
Breathless.
Heart palpitations.
Hair loss ( still a struggle with a dry itchy scslp)
I can't find more scientific papers.
Have read up on ferritin.
As my daughter did have megobolastic anaemia and a ferritin level of 9.
She had symptoms of hypothyroidism.
Read and since proved.
Low ferritin levels can mimic symptoms of hypothyroidism.
Even her body shape changed back.
Its so complex.
More PhD study needed !!
All I could find was this - ncbi.nlm.nih.gov/pmc/articl...
As for gaslighting I am also familiar with regard to that issue. 😡
Hi Annaunge,
Welcome to the forum.
This next link mentions support for Swedish patients with B12 deficiency
b12deficiency.info/very-use...
I suggest you try to find regional and national guidelines for treatment of B12 deficiency in Sweden. See if the Swedish Society of Haematology has published anything.
List of European Haematological societies
esh.org/national-society-of...
Some useful B12 links
It's possible that some may have details that could be upsetting.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring and an online contact form.
PAS membership is separate to membership of this forum.
Testing for PA
pernicious-anaemia-society....
I've also read that a pepsinogen test may help to diagnose PA.
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute - Netherlands
The above website mentions a B12 deficiency conference in Rotterdam, June 2023 that your doctors might be interested in.
Two useful 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 (US authors)
Very comprehensive with lots of case studies.
Films/videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
"my doctors do not believe in my theory of having b12 def as an explanation pf my health issues."
Some doctors and other health professionals can have misconceptions (wrong ideas) about B12 deficiency.
B12 article from Mayo Clinic in US
This is one of the best research articles I've found on B12 deficiency. Might be a good one to show to your GP.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from other countries)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)
b12-institute.nl/en/diagnos...
I'm in the UK.
May be worth searching the forum posts with term "Sweden" to see if you can find other forum members from Sweden or living in Sweden.
I did come across a BMJ (British Medical Journal) article that said high dose oral b12 is used widely in Sweden. Search online for "BMJ B12 deficiency Sweden"
Many forum members here find that high dose oral B12 does not work for them and they need B12 injections.
Links about oral treatment for B12 deficiency
Note on oral treatment - from B12 Institute (Netherlands)
b12-institute.nl/caution-no...
Search online for Cochrane review of oral B12 treatment and read the conclusions.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes, symptoms, UK B12 documents, other B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some of the info will be specific to UK and you may find that you cannot access some links as you're not in UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I'm not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.
many thanks for your very helpful answer! I am very grateful. I will go through your articles. It is very strange in Sweden, I do have a contact with another swedish woman. Some statistical reasearcher made studies were they examined the B12 value in blood……after that, in 2005 , many are convinced that this will be the truth! And , patients wanting injections or more frequent injections are typical hypocondrials! Than you!
Having had b12 deficiency in the past is a possible explanation for current health problems, because 6+ months of b12 deficiency can cause permanent nerve problems that do not reverse as soon as b12 levels are restored. Blood normalises quicker than other parts of the body, because red blood cells are renewed every few months. Red blood cells last for about 100 days. Neurological problems often take longer to heal and may not heal completely.
The Swedish guidelines you mentioned, are they available online?
only in Swedish.
That's OK, I understand Swedish 
nationelltklinisktkunskapss...
Have you found and read the guidelines?
Yes, and the only thing I found was
Vid vitamin B12-brist kan folat- och järnvärden vara falskt förhöjda, vilket kan demaskeras vid behandling med vitamin B12.
Which I interpret as Iron and folate may be falsely elevated because of b12 deficiency, and can revert to true levels whith b12 treatment.
I couln't find anything in the text that it must happen within 4 days.
thats right. Sorryit is mentioned in a longer version, I will try to find it.
All nyinsatt behandling med farmakologiska doser vitamin B12 eller folsyra skall följas av behandlingskontroll. Ett hematologiskt svar utgör bevis för att brist förelåg. Efter påbörjad behandling med vitamin B12 eller folsyra sjunker S-Fe snabbt, inom 12-24 timmar. Retikulocyterna stiger efter 3-4 dagar och når sitt max runt dag 6-8. Genom att följa transferrinmättnaden kan man dels kvittera ett snabbt behandlingssvar, dels demaskeras ev järnbrist, vilken också måste behandlas för optimalt hematologiskt svar. Även sådan järnbrist skall utredas förutsättningslöst. Hypokalemi förekommer vid snabb cellökning. Hb stiger som mest med 1 g/L/dag och normaliseras, liksom MCV, först efter 2-3 månader. Uteblivet behandlingssvar innebär kompletterande anemiutredning
Scientist, not medic.
I don't have a reference to this, but it's 'fairly widely accepted'. Treatment of a megaloblastic bone marrow with B12 and/or folate will see a reversion to normoblastic bone marrow within around three days. This can be seen by the quite rapid diminution of the number of hypersegmented neutrophils in the peripheral blood, but that's not something that is likely to be identified on a random blood count. Neutrophils have a much shorter lifespan in circulation than red cells so you see the difference very quickly. A reticulocyte count will reflect the increase in effective erythropoiesis within a few days, but once again, it's a specially requested test, not part of a routine FBC. The MCV will fall gradually, but it'll take 3 to 4 months, assuming you don't have a co-existing iron deficiency. RDW, [when reported], will start rising within a few days, peak in a few weeks and then return to normal when stores are replete.
Good luck, and stick with what you're doing!
tanks!
I found the link by googling a sentence in the text, here it is:
internetmedicin.se/behandli...
Though it doesn't explain why you're having lowered iron now, after such long time. Has the recently low iron been followed up as a possible absorption problem?
According to the international b12 def group and Pat Kornic, it usually takes 4 months for iron def to show up after starting b12 inj. I had a gastroscopi last week, but no results yet from biopsis taken.
The article Jillymo linked to earlier in the tread shows that reduced iron values is common after 1 to 3 months of b12 treatment, when the b12 deficiency was considered cured. Here's the link again:
Grate! Thank you! I am prepared for next app with hematologist……and neurologist….. neither believes in my b12 def theory! Nore does my gastroentologist…. Each of them just refer to each other…….this is a battle!
Feeling better so soon after B12 injections?!?
B12 levels 6 months after loading injections
Started B12 injections, What else can I do to help?
GP comments about B12 levels after injections started?
