Hello nice members, I am new to this group although I do belong to the thyroid group. I have not felt ‘well’ for about 6 years and am trying my best to now get myself back to health. I have a good GP who has agreed to give me a trial dose for hypothyroidism as I have so many of the symptoms and a private blood test showed a possible development of the condition but through researching the internet, I am now wondering if I might have PA (I have SO many symptoms that indicate this as a possibility). I would be so grateful for some advice so that when I see my GP next, I can talk to her about it.
I have attached my most recent blood tests to this post. I’m not able to attach more than 1 photo so here is the other result that I think is relevant:
Serum vitamin B12 level 773 ng/L[197.0
- 771.01
Above high reference limit
Serum folate level 17.1 ug/L [3.7 - 18.7]
I tested negative for Ceoliac
My dear old mum had PA.
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KimNancy
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Hi KimNancy welcome to this forum you are very welcome,
Are you willing to say which country you are in and and also your age, kind of diet etc?
You say "I have a good GP who has agreed to give me a trial dose for hypothyroidism" was that a dose of Vitamin B12 and if so how long before the above test results.
I am not a medically trained person but I understand that thyroid problems can cause a vitamin B12 deficiency and the serum blood test is not good at detecting how much is actually in the cells.
In addition P.A can be an "inherited" condition.
Hopefully someone on here with more knowledge will be able to help you more than I can.
Hi Clive, I live in the South West of England, I am 58 and have a normal diet (meat eater, avoid sugar where possible). The GP has prescribed 50mg of levothyroxine to see if it helps the symptoms I’m having
Ah OK - silly me - so you weren't given a B12 dosage which I had thought might have explained your serum level being "Above high reference limit".
P.A. is caused by a lack of intrinsic factor. Pernicious anemia is an autoimmune disease that attacks and potentially destroys gut cells so that intrinsic factor is not present, which is crucial for vitamin B12 to be absorbed.
It would appear that your diet is providing sufficient B12 although as we age stomach acid levels decrease making absorption more difficult.
Perhaps it would be best for the time being to see whether the course of levothyroxine improves your symptoms.
Thank you very much Clive, I really do appreciate the advice. I am thinking I might well be someone who doesn’t absorb the b12 properly so will wait until my next hypothyroid test and based on the results, try to discuss the possibility of this with the GP
You are absolutely correct EiCa which is far more than the IF test 🥵
I was "fortunate" fifty years ago at the age of 30 to have the "Schilling" test and even then I'd had to have two, four years apart, before I got the P.A. diagnosis - thirteen years after having had two thirds of my stomach removed at the age of 17 due to a burst ulcer,
My doctor in 1972 gave me two years to live unless I ate raw liver three times a day or injections of B12 every month for the rest of my life.
I chose the injections and I'm still "clivealive" at the age of 80.
Are you currently taking supplements that contain B12 or getting B12 injections or eating a lot of B12 rich food?
A high level of B12 when a person is not taking any supplements or having B12 injections should be investigated as it can sometimes be associated with a serious health condition.
May be worth writing out a typical weekly diet, food and drink so GP can see what you are eating.
Has GP checked liver and kidney function?
UK guidelines indicate that people who have the symptoms of B12 deficiency should be treated even if serum (total) B12 is within range.
It is possible to have functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
If you have the symptoms of B12 deficiency with a family history of PA, I would expect your GP to test you for PA even though your serum B12 result is just above range.
If you have other auto immune conditions, this is also a risk factor for developing PA.
I am going to post a lot of info that could be helpful so I suggest you take at least a week to sift through it so it's not so overwhelming.
Some links I post may have details that could be upsetting.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Have you been checked for coeliac disease?
UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum as to how B12 deficiency is managed.
Many of us on the forum have met health professionals with misconceptions (wrong ideas) about B12 deficiency. Worth knowing what some of the common misconceptions are in case you meet a health professional who has some.
Links to forum threads where I left other detailed replies with lots of B12 deficiency info eg more on causes and symptoms, more UK B12 documents, more B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you so so much Sleepybunny, I will take my time and read each link. I am very grateful for the time you have taken to put together the information, it will invaluable for my conversation with my GP
If you have queries about treatment /diagnosis I would recommend putting them in a brief, polite letter to GP as this makes it harder to ignore a patient's concerns. May sometimes be useful to copy letter to practice manager as well.
Having a paper trail can be useful if a formal complaint is necessary in the future.
I think your GP should try to find out why your serum B12 level is above range.
It is possible to have the symptoms of B12 deficiency with an above range serum B12 result.
Tests such as MMA, Homocysteine and Active B12 (Holotranscobalamin) may be helpful in diagnosing B12 deficiency where serum B12 is normal range/above range.
To add to the good advice above, I believe you are right to suspect B12deficiency. Two or three significant signs, which you’ve probably picked up on are:
* High MCH - macrocytic anaemia ?
* Family history
* A connection with thyroid disease - (research shows 40% of those with thyroid disease go on to develop B12 deficiency and vice versa - four in our family have both - passed down the maternal line)
I agree with Sleepy Bunny’s suggestion about writing to your GP. Tracey Witty’s B12 deficiency website has helpful suggestions about this. b12deficiency.info/what-to-...
It wasn’t until I wrote to my surgery last year, quoting BMJ research document, UKNEQAS etc. and family history, that I was taken seriously:
BMJ Research Document (summary only):
bmj.com/content/349/bmj.g5226 extract:
“The clinical manifestations of vitamin B12 deficiency (fig 2⇓),3 5-7 9 13 represent the effects of depletion on multiple systems and vary greatly in severity.”
“Mild deficiency manifests as fatigue and anaemia, with indices suggesting B12 deficiency but an absence of neurological features. “
“Moderate deficiency may include an obvious macrocytic anaemia with, for example, glossitis and some mild or subtle neurological features, such as distal sensory impairment. “
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