hey all.
so my thyroid levels are eventually back to normal but I’ve still been feeling crap.
My b12 levels were 202 . 2 months later they’re now 192 but my doctor is saying this can’t be treated until the levels are 180 or lower?
I’ve requested all my blood work and asked to be referred to endo as I am so fed up of feeling like this and getting nowhere.
I am on folic acid 5mg daily and 125mcg levothyroxine daily
Your GP should run a test to exclude Pernicious Anaemia. P.A. is a condition which means we who have this condition need regular B12 injections.
The usual dose is one jab every few months but I get a monthly jab and GP said I could have as many I want until I feel well with no symptoms.
I have very little confidence in the majority of GPs and the following might be helpful for you:-
hoacny.com/patient-resource...
Hey. Thank you for your reply.
I don’t have any blood work as I need to request it which I have done.
The only numbers I know is that my b12 is 192.
My GP has been very unhelpful and basically saying i was to come back when my levels were at 180.
My forte levels have came back up (she never said to what) and my cholesterol is still high.
I have every single symptom and have done for months now. I’ve requested she contacts the endocrinologist for advice as I feel at a loss.
I’d have thought with it being on the lower end she would want to further investigate but nope I had to argue my case for her to even consider the endos advice.
If someone is feeling very unwell, we rely upon a GP to be knowledgeable so that they, through certain blood tests, confirm if the patient has one condition or another.
Before I diagnosed myself a GP phoned to tell me that I had no need to worry as my blood tests were fine!
Unfortunately for me, he had no clue as to what a TSH of 100 indicated.
We, the patients, shouldn't be searching the internet for an answer.
However, due to this forum there are many members who are more knowledgeable than GPs about some conditions and who will suggest tests be taken to either confirm or clear a certain autoimmune condition.
There is also a routine to follow in order that we, the patient, get the best possible results. The next step then begins. Always get a print-out of your blood test results, for your own records and you can also post for comments from members.
I also had a tsh of 100 and was told I was depressed for years before they done this test. I was so poorly so I can totally sympathise with you xxx
I feel for you too, no-one who hasn't experienced this grave condition can possible understand how very unwell we can feel and GP might probably prescribe 'other medications' before checking the Free T4 and Free T3 and antibodies.
Yeah I was put on sertraline (antidepressant) for years. Since I’ve been medicated with levothyroxine I’ve never took or needed an antidepressant. Just shows how wrong they can be.The way I was treated even with trying to get someone to listen to be back then was terrible. They just kept blaming being depressed until I took myself to A&E xx
I wouldn't be surprised to know how many people are given anti-depressants due to making more visits to GP or hospital as they are not being diagnosed/prescribed what is necessary.
1123ayoung
Low B12 is low B12, Hashimoto's or not.
Do you have the unit of measurement for your B12 result? pmol/L or ng/L or pg/m. (the latter two amount to the same).
My b12 levels were 202 . 2 months later they’re now 192 but my doctor is saying this can’t be treated until the levels are 180 or lower?
This is presumably because 180 is the bottom of the range and he wont treat until it goes below range.
With B12 it's symptoms that should take precedence over numbers.
Do you have any signs of B12 deficiency – check here:
b12deficiency.info/signs-an...
b12d.org/submit/document?id=46
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml (147pmol/L) to at least 450 pg/ml (332pmol/L) because deficiencies begin to appear in the cerebrospinal fluid below 550pg/ml (406pmol/L)".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml (738pmol/L)."
I am on folic acid 5mg daily
B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.
Your doctor is handling you extremely poorly.
Someone with low, or very low, B12 should NEVER start folic acid before B12.
Check vitamin B12 levels in all people before starting folic acid — treatment can improve wellbeing, mask underlying B12 deficiency, and allow neurological disease to develop.
cks.nice.org.uk/topics/anae...
5 milligrams of folic acid is a high dose. Most people should NOT be on that dose long-term. Typically, one to three months, then see how it is going. You might need some folic acid long-term, even forever, but usually not that much. There have been numerous reports of people on that dose feeling poorly and improving by reducing to, say, 400 micrograms.
I suggest you post in the Pernicious Anaemia Society forum here:
Concentrate on the B12 side but be very clear about the folic acid.
I have every single symptom and have done for a few months now. All this information is so helpful.
I have been prescribed folic acid 5mg for over 2months now which she said today that those numbers are away back up.
I’m glad you wrote this as I was just looking at buying b12 supplements or even considering paying for the injections. I’m just desperate to feel like me again.
I just hope after she’s wrote to the endo that he is on my side and sees where I’m coming from.
I’ve been back and forth at doctors with symptoms and just get turned away because levels aren’t low enough.
They also do a standard full b12 count and not an active b12 blood test.
My cholesterol is also still high.
Appreciate your help.
I wish my GP had as much knowledge and understanding as you xx
Very few NHS facilities do Active B12. But yours is so low it is ridiculous. It doesn't need an Active B12 test.
I will categorically state that you need injections. You need to start them as soon as possible. (No, I am in no way trained in medicine.)
Please post on PAS forum. There are many there who have been in a similar situation.
Looking for advice as my head is all over the place and not sure what I should say.After putting a complaint in to the doctor about how I’m feeling and my levels being low the doctor called me this evening and has asked me to go in tomorrow to discuss further and check out my stomach.
She was arguing the point that my levels at 192 would NOT make me feel the way I do as they are not low enough. She is saying it could be down to something else.
I’ve argued my point back that my thyroid and folate levels are now ok but b12 isn’t.
Do you have any suggestions on what I should all say tomorrow?
I’m going to take a note of all my symptoms and write them down but if the guidelines are 180 or lower then I doubt I will get the b12 medication. Looks like I’m going to have to get sicker before they help which I’ve told her I find absurd xx
Do you have a printer?
If so, go here:
cks.nice.org.uk/topics/anae...
And print the following pages:
Diagnosis
Assessment
Signs and symptoms
Investigations
Interpreting investigation results
Confirmed deficiency
Then work your way through them with a pen/pencil and identify the symptoms you have, etc. Mark tests you think you need.
(If you don't have a printer, you can copy the words yourself. 
)
I'd be much happier if you were asking people who really know about B12. I don't know very much at all. 
The Pernicious Anaemia Society forum is here:
healthunlocked.com/pasoc
Thank you so much xxx
Ignorance from GPs and/or doctors is not warranted as we, the patients, remain undiagnosed with very disabling symptons.
Your B12 result indicates the amount of B12 circulating in your blood. NOT the B12 in your cells where it is needed. Only around 20% of your result is able to make it to your cells.
Are you taking any medication that could be affecting your B12 - eg Acid lowering drugs ?
Hi.
The only medicine I take it’s levothyroxine 125mcg, folic acid 5mg and cocodamol 30/500. Would any of these cause it?
There are, broadly, two causes of low B12.
First, there is not enough in what you eat.
Second, you are not absorbing what is in your food.
(Of course, both could be contributing together.)
That is why Marz asked about acid lowering drugs which reduce absorption of B12.
But even if drugs were causing it, and I doubt they are, you MUST do something about it. Imagine you stop taking a drug which affects absorption, it will take at least months for B12 to rise to be just about acceptable, possibly years. Throughout that time you will be living with symptoms and accumulating issues.
I have put a form in to request my blood work. All I know is my b12 is now 192. My last bloods they were 202 so I’m 2months they have dropped again.My doctors argument is that my b12 needs to be 180 or under before they can treat. She said that is the guidelines. Is that correct? I’ve asked for a second opinion of the endocrinologist which she’s agreed but like you say I’m just getting worse so how long do I wait? I’m stuck what to do next?
No it is NOT correct.
They should take into account symptoms.
There is a Clinical Knowledge Summary for B12 and folate deficiency available from NICE. However, that is not a formal NICE guideline, just some general advice.
You should have an Intrinsic Factor antibodies test.
New B12 guidelines are being developed but are not expected for at least another year.
cks.nice.org.uk/topics/anae...
Again, please join the Pernicious Anaemia Society forum here:
It seems to me that few doctors are aware of how to diagnose or prescribe for those of us who have autoimmune diseases.
My mother had Pernicious anaemia and had injections of B12 regularly (maybe not as regular as it should have been). Then.........her GP after a few years of B12 injections told her that the B12 was fine and she needed no more B12 injections. Both my sister and I thought that was 'good news'.
Unfortunately, that doctor's decision caused my mother to develop stomach cancer and as I have been diagnosed with the same condition, my GP has told me I can have as many B12 injections as I require. I get it every month now instead of quarterly.
Due to me now having several autoimmune diseases I have had the diagnoses of a Polyglandura Autoimmune Disease No.3.
originalText
Omg I am so sorry to hear that 😔 that is absolutely shocking to say the least from the doctor that was supposed to care for your mum.
I am now being referred to have my bowels looked at as I have blood, bloating, soft and hard poo which I have had to complain about to get this appointment. This has been going on since April and even after telling 2 different drs on the phone not one of them asked for a face to face appointment until I complained and got one today.
This scares me as I never knew there was a link with stomach cancer and b12.
I hope my tests are ok 😞
Try not to worry too much at present and hope that your GP/doctor treats you properly.
By putting a fresh post onto the forum with your results/ranges members will respond. Ideally you need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
We can get well and have relief of clinical symptoms and I am one of them.
Ideally we need doctors who are sensible and knowledgeable but that sometimes seem impossible. We have a sort of "DIY" and quite a number of members resolve their conditions thanks to members who respond.
Intrinsic Factor is released from Parietal cells that line the stomach ( not the gut - the stomach ) Stomach acid breaks down proteins in food and releases B12 which binds with the Intrinsic Factor to protect the B12 on its journey through many yards of gut ! It is then metabolized in the Terminal Ileum and returns to the liver via the bloodstream - clever stuff.
So any gut problems - colitis, IBS, Diverticulitis, Crohns etc will interfere with B12 metabolism.
I was diagnosed with Crohns around 50 years ago and Gut TB resulting in lots of surgery affecting the Terminal Ileum. So have learnt a few things along the way 😢
This is very interesting you have wrote this because I have always had issues with my bowels. I have just sent an email of complaint as I’m at my whits end as to what to do. ( it’s not perfect as my head is mush but hopefully got my point over) Here’s what I have said -
I want to make a complaint about my treatment regarding my blood work.
I have been back and forth getting bloods done for symptoms of low b9, b12 and high cholesterol.
I have been treated for low b9 but not b12 even though all my symptoms are clearly stating that my b12 needs treated.
I am told that my b12 needs to be 180 or lower before it is treated yet guidelines on the nhs would state otherwise.
I would think that b12 should be treated along with or before b9.
My levels in 2 months have went from 202 to 192 so they are getting worse even with the treatment of folic acid.
On the phone call about my results I was initially told that my b12 and b9 were fine. My b12 levels are not fine and even if due to guidelines you can not treat (which I find absurd) then I am sure further testing would need to be carried out as to why the levels are low.
After feeling desperate and asking the doctor if she could contact the endocrinologist to see what he thinks about the blood work. Dr Duncan did agree but I was given no time on when I would receive an answer and this just is not good enough. My health is getting worse and not only I am suffering but mg family are too.
I have also stated to two different doctors about my bowels. I have bloating, hard and soft stools and I am having a lot of blood when I poo (I have been photographing to document this) and not one of those doctors have asked me to come in for a face to face meeting.
Instead the doctor seemed more concerned about how cocodamol is addictive and has sent me letters for pain management.
Right now I have no energy to even dress myself let alone go to physiotherapy.
I am not a doctor but I know my own body. I am a shadow of the person I used to be with the deliberating symptoms I have.
I would like a second opinion on my recent blood work because to me these are not “fine”.
Regards
Ashley young
For your privacy and safety, you might want to take out your full name and Drs name from your letter.
I am livid that they have left you in this state for so long. Have you been referred to a gastro yet? And proper coeliac testing, if not already done and still eating gluten. Sending a hug.
Hi, sorry you are having to deal with this. Your doctor is ill-informed. It is perfectly possible to have a cellular B12 deficiency with low or normal or even high-normal serum B12. The process is long and complicated and there are many places where things can go wrong or just function slightly poorly, which over time can produce considerable symptoms. If you were an otherwise fit and healthy person who had just had an incidental low test but was not symptomatic and was perhaps vegan, they might have suggested diet changes or supplements. I still wouldn't have expected them to leave you for it to drop further. But you already have one closely linked autoimmune condition, feel rubbish and are presumably symptomatic (and not vegan), so you need better investigation and treatment. The folic supplement prescription may well have made that tricky process even harder, as it can correct some of the diagnostic markers used. Folate and B12 deficiencies have very similar symptoms as they are very closely interlinked. Being low in one makes it very likely that you will be struggling with the other. Folic acid supplements work for some but a few cannot process it well and are better with a methylfolate (I'm one of them). But only a small amount, you do not want to be taking a lot of folate and especially not a lot of folic. My (unsupplemented) folate was high in blood tests because I couldn't use it properly, and it actually came down to a proper level when I started taking methyfolate at approx 400mcg daily, divided into three doses, as well as my B12. Do any family members have B12D or PA? B12 metabolism is strongly genetic and your doctor may take more notice if you can tell them about a history of either B12 issues or other autoimmunity, especially commonly linked ones like vitiligo, coeliac and thyroiditis. Private tests are available if you have to and have the means to do it, but hopefully will not be necessary. I'm glad that you are getting copies of results, which can be very useful, particularly the full blood count which will have other indicators of possible deficiencies. The picture can be confused if you have both low B12/folate and low iron though. Good luck
You don't necessarily have to have Vit B12 by injection. You can try taking an over the counter B12 tablet and then have another blood test to see if it has improved.
See post from Marz below. Low or deficient B12 could be by caused by another auto immune disease. You could have a blood test for antibodies to the parietal cells. However, there are other causes including diet.
I have similar B12 levels to you (for 20 years!) and also parietal cell antibodies. However, given there is some B12, I think it unlikely you would need injections. Some people have none and the thinking seems to be that the B12 in tablets will not be absorbed but if there is some activity I think they will.
I noticed a big improvement in energy and memory almost immediately. I only bought the tablets because I read on this forum good levels of B12 were necessary for the take up of levothyroxine which I started a few months ago.
I'm afraid the NHS only covers critical illness or disability (ie if you are going to die soon or can't walk for instance). It is not the role of the GP to treat you for this type of condition which is pretty chronic. Their main role is to act as a gatekeeper and stop you accessing medical treatment on account of cost. There are limited funds and they limit treatment to critical conditions. I only paid £5 for two bottles of B12 tablets. I know hte potential effects of under active thyroids the the very wide ranges which are aimed at picking out the most serious cases. The NHS stance seems to be that people can put up with these conditions and if they find they don't want to then to try and force them to pay.
You have a valid point about getting over the counter which I have asked today if I should. The dr has told me no as it will interfere with the tests she is doing. I have the symptoms of fatigue , weakness, shakey, palpitations etc but I’m also having a lot of issues with my bowels like a lot of blood in stool. I think once the next bloods are taken and the endoscopy is done and everything else ruled out then I can think of self medicating.
To me it would seem the obvious thing to do but dr advised not to today xx
I have a friend who has injections for pernicious anemia. It is an auto immune condition caused by anti bodies attacking the parietal cells lining the stomach. Her first and only symptom was that her arms started going wobbly when driving. Her blood tests showed B12 as non existent so the injections were needed to restore B12 urgently before serious damage set in. She suspected it because it runs in the family and it was easy to investigate because of one specific and relevant symptom.
I have the same thing - antibodies to parietal cells. However, my B12 levels were similar to yours for about 20 years - 230 . I think unless the B12 deficiency is total, it can be treated with tablets. I did not have symptoms I was aware of. However, I had out of range TSH blood tests (6 - 7 on a range of 0 to 5) for 20 years but no antibodies., but the readings changed to almost 9 recently and I developed a goitre. I had to pay to see an endocrinologist. The NHS will only treat conditions once they become serious or dangerous and they were still saying the TSH had to be over 10. It is not the GPs per se but they are governed by the local health authority. The NHS lab used to request antibody tests, not the GP, and directed the GP not to treat me for an underactive thyroid. They seem to try to push the less serious cases to pay privately. This is why they have such huge normal ranges - it is only when results go out of those ranges that there is a serious problem. So far as they are concerned, patients can just put up with the condition if the results are within range - or pay.
You should include a parietal cell antibody tests in the blood tests but, better still if you can get it, ask for a full range of anti body tests covering all auto immune conditions.
If B12 tablets skewed the results of a B12 blood test, it would be good news because it would prove that you do not need injections which must be a nuisance.
it depends on your local Integrated Care System (the old Clinical Commissioning Group) 's own guidance says. Usually the lower limit is 200 pg/ml. Gloucestershire Hospitals is 180 gloshospitals.nhs.uk/media/...
Hull and East Yorkshire say 115pmol/L) - 150pmol/L) should be assessed on an individual basis.
The British Haematological Society recommend a serum cobalamin cut-off level of either 148 pmol/l(200 ng/l) or one derived from a local reference rangeshould be used as evidence of cobalamin deficiency inthe presence of a strong clinical suspicion (Grade 2B)
but also say: The interpretation of the result should be considered in relation to the clinical circumstances.
onlinelibrary.wiley.com/doi...
Getting an Intra Muscular injection of Vitamin B12 at your surgery is likely to be very difficult.
I've resorted to buying it from the internet and inject myself.
Graves’ disease and low ferritin?
Has anyone being classed as clinically vulnerable for COVID-19 having Hashimoto’s thyroiditis which is an autoimmune disease?
Still unwell..now saying low B12 ?
Did anyone have a misdiagnosis before being diagnosed with Hashimoto disease?
Addison's Disease and Hashimoto Hypothyroidism
