Why is it that my b12 went from 219 in 2019 to 77 today ? I don’t understand how it went so low as I though b12 stays in your body for at least 5 years ?
Clueless pls help ?
B12 question : Why is it that my b1... - Pernicious Anaemi...
B12 question
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Reembow
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If you've been diagnosed with Pernicious Anaemia you need regular B12 injections.
I have this condition and have a regular B12 injection.
I used to get a quarterly injection but now I get a monthly one. GP stated I can have as many injections I feel I need.
My Mother also had this condition but after a while GP stated her 'bloods' were now fine and she needed no more B12 injections. Both my sister and I thought that was 'good' but it wasn't. We had no access to the internet at that time.
I believe that the doctor's advice caused my Mother to develop stomach cancer which caused a premature death.
Can you share more context?
219 is quite a low reading anyway. But were you taking supplements? Are you a non-meat eater?
So this is what I mean, if you look at these results you will see that I went from 219 to 77 , how is that possible ? I do eat meat ?
Results
What was the reason for your test in 2019?
You probably have an absorption problem and need the advice and investigation of a Doctor
well I had a baby a year earlier and wanted to get a general blood test done, this year upon receiving the latest blood test that showed the b12 at 77, the dr asked for me to get a biopsy done which came back negative for celiac, I am now being treated as if I had pernicious anemia until the test results come out and actually confirm that I do
Are you perimenopausal? Any gut problems or IBS?
If not then it's possible it is PA but I think the Doctor should be able to confirm
yes I do have ibs but not perimenopausal, Im just wondering how it went that low after being higher in 2019, isn’t b12 supposed to stay in the body for at least 5 years.
I think, like most vitamins, its an art and a science. It's a variable amount, e.g. you could test yourself one day and get a slightly different reading the next day But the body needs regular B12 intake because it uses it up in different ways. E.g. in times of stress its recommended to increase B vitamin intake as the nervous system uses them up.
If you had a baby, that's a stress on the body. So it probably will use up alot of B12 and folate, right. So now, with a dropping level, either you're not taking in much B12 and have been stressed or you have an absorption problem. In which case it will drop over a few years and there's nothing you could do about that but get a diagnosis and injection treatment.
IBS could be at the root. But maybe don't rule out perimenopause as many women experience B12 deficiency during that stage of their life.
I was very stressed come to think about it I had post partial depression
would you have been taking folic acid whilst pregnant, as that will utilise B12 & can lower levels.
hi yes I was taking folic acid but at that stage 4 years ago I was still in the 200s it only happened to be this year that it dropped to 77, you see I was pregnant 4 years ago. My levels were higher post pregnancy and in the 200s
Did you have nitrous oxide during labour? That could have inactivated a proportion of your B12 (which would only have shown if they tested active B12, or MMA etc) and precipitated an underlying problem.
"I am now being treated as if I had pernicious anemia until the test results come out and actually confirm that I do."
This is exactly what the doctor should be doing. It sounds like you are one of the fortunate people who have doctors who have an understanding of B12 deficiency with neural (as opposed to hematologic, ie, blood) symptoms. When there are indications that B12 levels are so low that nerve damage could be occurring, doctors are supposed to begin treatment immediately immediately to prevent possible further damage, with no less than weekly injections and as often as every other day, and continue for three months, before reassessing. Only one test confirms pernicious anemia (in which the immune system attacks a protein in the digestive tract called "intrinsic factor") and that is a positive test for immune system antibodies for intrinsic factor. (There are few false positives for this test; there are many false negatives, so a negative test result has no meaning regarding whether the patient does or does not have pernicious anemia.) But pernicious anemia is only one of many possible causes for B12 deficiency, and there is no gold-standard test for any of those. Therefore B12 deficiency is often a clinical diagnosis not based on lab test results. For example, if there are symptoms of nerve damage, and after three months of provisional treatment with B12 injections the severity of at least some of the symptoms subside, that's a strong clinical indicator that the person was experiencing B12 deficiency.
Again, from what you have said you have a doctor who actually understands B12 deficiency, and if that is so, then you are one of the lucky ones.
I am not medically trained and welcome correction for any errors on my part.
thank you WiscGuy I really appreciate your input as every little bit of information helps !
Often this does happen ( right treatment started) but if the IFA test is negative treatment is wrongly stopped or greatly reduced or you can be put on oral b12
'Stores last 5 years'
Was it a serum b12 test ?
Not if you can't absorb it from your food.Your stores will just deplete.
That's if you csn use them
Were you on b12 injections?
If so you obviously need a regular maintenence regime.
Are you symptomatic?
Was your folate iron and vit D okay.?
If you have a normal level of B12 and not not taking in more (or not enough), then it can take 3-5 years to exhaust your body's supply of B12. You did not mention what units your B12 is being measured in, but it sounds like it is too low and you should see a doctor.
Thank you for input !
Scientist, not medic.
It's confusing, isn't it? The 'five years' is the estimate of the amount of B2 stores a 'normal, healthy adult' [whatever one of those is!] Quite how that figure was arrived at, I'm not sure. However, it's assumed that, if you stop absorbing B12, it will take up to five years to deplete your stores. Replenishing your stores back to 'normal' is another matter, from a severe deficiency state. You need very regular injections, or if you're fortunate enough to be able to absorb oral B12 in megadoses, plenty of those too.
Good luck, and Happy New Year!
The five years claim seems to be based on someone with working entero-hepatic recirculation.
Your liver reservoir has enough to make up for the tiny losses of B12 each day when everything is working well. If that is disrupted, it won't last.
If we take the losses as 3 micrograms a day, then we'd need to store only about 5.45 milligrams to withstand five years of losses. But, in health, it is suggested we actually release up to 125 micrograms of B12 a day. It is recirculation that collects 122 micrograms for re-use but misses just 3 micrograms. Without recirculation, that would last just 43 days. (All based on extremely simplistic arithmetic approach.)
Think of the small water features that recirculate their water. Measure at the spillway and it looks as if there is a vast amount of water continuously flowing. But that is only possible because of the hidden pump and pipe.
You only need to top up losses from evaporation or spillage.
Break that system, maybe develop a leak, and the water stops quite quickly. Topping up, even generously, only allows it to run for a short time.
An imperfect analogy, I know.
Recirculating water feature
Hello Reembow,219 is quite low, so 77 is rock bottom.
You may want to Google pregnancy and B12 deficiency. There is interesting info about it. Some info can be a little scary if you are new to this, but it's important to know.
Do you breast feed? It is important for the baby to get enough B12 to develop DNA and build red blood cells and nerve myelination etc. I think if your B12 is low, maybe you should test the baby to make sure they have enough B12 too. Just a suggestion.
Also, did they run an IFAB intrinsic factor test on you before giving you any B12? All tests should be run before you ever take B12 if possible. B12 can cause false positives, or muddied results. Many doctors make the mistake of ordering tests after they already start you on a B12 treatment.
PA can be hereditary so think back on relatives with stomach cancers, or other unexpected gut issues.
what is reference range for the 77 result?
QUE6T-33
B12 test result
slightly confused as your result only lists ‘optimal level’ being 30-75 doesn’t it. Whereas my results are set against a reference range indicating low, mid range, optimal. So from my perspective your result sits in optimal doesn’t it?
hi I was not breast feeding at the time as I had not gained any weight whatsoever diluting pregnancy and I’m fact I had lost wait and looked like a skeleton. They have not yet done the test for IFAB but the doctor ordered it to be done. I am already on my 4th loading dose. Do you think I should not do the test now ? He also ordered and MMA test to be done ?
my son is 4 years old now btw 
I also already started my loading doses when they gave me my IFAB test. It came back positive for pernicious anemia, and now 8 months later they don't want to accept that as accurate because I had B12 in my system. They say you only have to go without B12 for 2 weeks to get another test, which is complete and total nonsense, but I did it and I depleted myself for 2 weeks and suffered a lot for it to take a test and have it be undeterminable. My B12 was still greater >1500. So once you get B12 in your system, 2 weeks is not enough time for it to be out. If you inject your B12 will still be high even after 2 weeks even after 6 months. So it's best to get all those tests done before they start putting B12 into your body, but none of the doctors ever do that. And then you get stuck like me where nobody wants to believe their own test results. Yes, get the tests, but whether or not your doctors are going to accept them because you have B12 in your system is another story. But definitely get all the tests you can.
I’m sorry you’re having to deal with this. Here’s some more info:
There are only 2 reasons the body’s B12 levels get low:
1) The person is vegetarian or vegan (because we get B12 from animal products like meat and dairy), and they have not been taking the necessary B12 supplements.
2) The person has a malabsorption problem, where their body is not properly absorbing B12.
The body absorbs B12 in the stomach and in the intestines.
Intestines: Your doctor checked for celiac disease, because celiac can cause inflammation in the intestines and prevent B12 from being absorbed properly there. If you were negative for celiac disease, that doesn’t completely rule out the possibility that the issue is in the intestines, but it does rule out the specific autoimmune disease called celiac.
In the stomach, the body absorbs B12 by creating special proteins called Intrinsic Factor, which bind to B12 molecules from food. These intrinsic factor glycoproteins attach to the B12 in your stomach and help carry the B12 off to get absorbed/used by the body. But sometimes there is an issue where the stomach has a hard time producing Intrinsic Factor.
There are two somewhat common causes for this:
1) There may be an “environmental” cause, such as a bacteria known as h.pylori. When a person has an h.pylori bacterial infection, the bacteria gets in the stomach and hangs out in the stomach lining, causing irritation. This irritation interferes with the stomach’s ability to create parietal cells, and parietal cells are needed in order to create intrinsic factor. Your stomach lining can become chronically inflamed for years, because your body is struggling to fight off the h.pylori in your stomach lining.
Chronic stomach inflammation (“gastritis”) can also be caused by other environmental issues, like certain medications. For example, if you are taking a proton-pump inhibitor (like omeprazole) for a very long time, that can interfere with the stomach’s normal processes and lead to a B12 absorption problem.
2) There may be an “autoimmune” cause. Sometimes the body gets mixed up about which cells are your cells and which cells are not-yours/bad/invader cells that the immune system should attack. This can happen for many reasons, but you mentioned a somewhat recent pregnancy: when there is a fetus in the womb, the body has to make sure not to attack the not-yours cells, since the baby is 50% you but also 50% not-you (the father). During and after pregnancy, the body can have autoimmune issues, some of which will clear up naturally over a few months or years. But some autoimmune issues linger or become permanent.
If you do have an autoimmune issue, it might not be because of a recent pregnancy. Pernicious anemia, for example, is an autoimmune disease that can happen with or without pregnancy — and there are many others.
With an autoimmune cause, the body starts identifying parietal cells (in the stomach lining) as bad, and it attacks them. It creates parietal cell antibodies (PCA), which your doctor can do a blood test for. Parietal cell antibodies can be present if you have pernicious anemia, autoimmune atrophic gastritis, or a few other autoimmune issues. If you test positive for PCA, your doctor can run more tests (blood tests, biopsies, etc) to try and figure out the exact cause.
If the body is also attacking your intrinsic factor, it creates intrinsic factor antibodies (IFA). Your doctor can do a blood test for these: if you have them, there is a 95% chance you have pernicious anemia. But only around half of people will test positive for IFA even when IFAs are present, so testing negative for IFA doesn’t fully rule out pernicious anemia.
It is good that your doctor is starting you on B12 injections. Chronic low B12 is a serious issue. It takes years for the body to deplete its B12 stores, which means the malabsorption issue has likely been ongoing for years. The longer a person’s B12 is too low, the more likely they are to develop permanent nerve/neurological symptoms (like tingling in the hands/feet, memory issues, etc). Other symptoms of low B12 will improve as your B12 gets replenished. But until your doctor identifies the specific cause of your low B12, you and your doctor need to continue to monitor your B12 levels and continue to treat your B12 deficiency.
Ask your doctor what the next steps are for identifying the cause of your low B12. Some doctors will just start with injections of B12 without continuing to investigate the cause. If you are not vegetarian or vegan, then your body is having a problem absorbing this essential vitamin. To find out why, your doctor may test for:
- h.pylori bacteria: if you have a lot of antibodies to h.pylori, you likely have a current infection that needs to be treated with antibiotics. If you have only a few antibodies, you likely had an h.pylori injection in the past. If you have 0 antibodies, you likely have never had an h.pylori infection. The symptoms of an infection can include issues with appetite, nausea, feeling full after only a few bites, weight loss, and more. (Other things can cause these symptoms too, which is partly why h.pylori infections can often go undetected for a long time.)
- PCA: your doctor should test for this if they haven’t already. If you have parietal cell antibodies, that shows an absorption issue in your stomach. Your doctor would then need to see what’s causing your body to attack its own parietal cells. It could be several things.
- IFA: Your doctor could test for intrinsic factor antibodies. Again, these are trickier to detect. But if you test positive for PCA, your doctor should test for IFA.
- biopsy: your doctor may want to do an upper endoscopy. If you haven’t had one before, it’s a procedure usually done under sedation, where the doctor sticks a camera down into your stomach to check for visible issues and to take a few tissue samples. I’ve had two of these and woke up feeling fine (if a little loopy).
If your doctor discovers that you have one autoimmune issue, your doctor should check you for other common autoimmune issues, because autoimmune diseases usually come in groups. If your body is mistakenly attacking good cells in one organ, it is likely attacking good cells in another area too. These areas can include the thyroid, adrenal glands, pituitary/hypothalamus, ovaries, and other organs. Your doctor can do blood tests to check for antibodies to your thyroid, antibodies to steroid cells produced by your adrenal glands, and more. Sometimes you can have auto-antibodies without having a symptomatic autoimmune disease. (For example, I have antibodies to my thyroid but my thyroid levels are always normal.) If you have auto-antibodies without symptoms, your doctor and you should keep an eye on your levels; although you might not have symptoms now, you might in the future.
I know this was a lot, but I hope it was useful. I am not a doctor, just a researcher (and someone with several autoimmune issues). I hope you find answers soon.
I believe that lack of properly functioning terminal ileum will also prevent adequate uptake of B12.
Hi thank you so much for your response. I really really appreciate it! The information is gold!!
I have a question for you, since having the biopsy also under sedation wouldn’t the doctor also have been able to rule out any stomach issues? He did say that there was chronic inflammation of the duodenum but he said that was a normal thing and common. I have checked for H. Pylori two years ago since I was having a strange bout of acid reflux for a few months but I came out negative at the time thank god. If I take an IF test now do you think it might be skewed because I am taking the loading doses or is that not the case ? Also I will attach my thyroid results so that maybe you can help me see if I’m missing something
Hi Reembow , I'm glad you found this info useful.
"since having the biopsy also under sedation wouldn’t the doctor also have been able to rule out any stomach issues?"
The tissue biopsies and the endoscopy help to rule out several things. It can rule out things that are very visible to the eye, like ulcers, areas of gastritis (very red/inflammed), areas of metaplasia/dysplasia (abnormal cellular growth that can sometimes lead to cancers), polyps, and other things. The biopsies are sent to the lab and the pathologists check for signs of cellular abnormalities by looking at the tissue samples under a microscope. They can also see signs of infections or bacteria (like h.pylori). Stomach biopsies are usually focused on what the tissue looks like, rather than what kinds of antibodies might be causing the issue to look weird.
If your doctor said there were signs of chronic inflammation in the duodenum (the first part of the small intestine), this is worth looking into further. I started having chronic stomach issues in late 2014. In 2017, the doctor ordered my first upper endoscopy; the results came back "normal" except for signs of inflammation/irritation. Five years later in 2022 (after years of a wide range of symptoms), I found out I have a B12 deficiency, which led to finding out I have parietal cell antibodies in my stomach, which led to my second upper endoscopy just last week — the results for which I'm currently waiting on. But all of this shows that it has taken 8 years for doctors to find out why my stomach has been bothering me continuously since 2014. Chronic inflammation is not good for your cells because it can promote abnormal cellular growth. It is worth finding out the cause so you can treat/stop the inflammation.
Having said that, chronic inflammation of the duodenum could be caused by a bunch of things. If you take NSAIDs (like ibuprofen, acetaminophen, etc), that can irritate your stomach/intestines. If you drink or smoke, that can cause inflammation too. But because you have an unexplained B12 deficiency, there needs to be more investigation. A B12 deficiency is a serious issue that needs to be monitored and treated — which it sounds like your doctor is doing. It is important to find out why it is happening.
helvella shared a good example of an intestinal issue your doctor could check for. An autoimmune disease might be in the terminal ileum part of your intestines, causing your B12 deficiency. One autoimmune disease associated with the terminal ileum is Crohn's disease. Crohn's disease can also affect your duodenum, so if the reason for the inflammation in your duodenum (and your B12 deficiency) is an autoimmune reason — and Celiac disease was ruled out — then your inflammation might be due to Crohn's disease. (Or something else.)
There is no official test for Crohn's disease, but you can ask your doctor to do a CBC blood test (to check for anemia) and a stool study (to check for blood/organisms/parasites in your stool). This can help point your doctor in the right direction.
You could also ask your doctor to do an ANA blood test (an anti-nuclear antibodies blood test); this test is a very general "is my body making auto-antibodies" type of test. It is not a sensitive test, but it can be somewhat useful. If it is negative, then it's unlikely that you have an autoimmune issue — that is the most useful part. If the ANA blood test is positive, that can mean two things: either you do have an autoimmune issue (somewhere), or your body has just a few auto-antibodies floating around but they are not actually causing an autoimmune issue. If it's positive, all that really says is, "It might be useful to check for specific auto-antibodies, like ones against your stomach, thyroid, etc." But if it's negative, it's less likely there's an autoimmune issue.
You said that your doctor checked for h.pylori a few years ago. Do you remember the exact measurement of the results? For example, my h.pylori test came back as follows: H. Pylori Ab IgG (by EIA) — Result: 2.1 U, Negative
What that means is that my H. Pylori Antibodies had a result of 2.1 units. This is a "negative" result in the sense that it doesn't indicate an active h.pylori infection. However, the fact that the measurement is not 0 units (it's 2.1 units) indicates the presence of these antibodies, which means I had an h. pylori infection at some point in the past. A past h.pylori infection can cause long-term issues, especially depending on how long the infection went on.
The way h.pylori survives in stomach acid is by nestling into your stomach lining and releasing an enzyme that causes your stomach to become less acidic and causes inflammation. Your body wants to fight this, but when the h.pylori bacteria gets attached to healthy epithelial cells in the stomach, the body has a hard time finding it and clearing it. This chronic inflammation leads to destabilization of the normal stomach processes as your immune system tries and tries to fight off the infection. Your immune system can mistakenly start creating antibodies to good cells — like the parietal cells in your stomach lining — to try and fight the invading bacteria.
I am a biased patient right now because of my own autoimmune journey. But in my opinion, it might be useful to double check your h.pylori antibody measurement (if they gave you a number). If it was not 0, and if you have a B12 deficiency, consider asking your doctor to do the parietal cell antibody (PCA) test. If you are positive for PCAs, that can be a very useful clue regarding which tests to do next.
As for the IFA (intrinsic factor antibodies) test, EDIT: See my next reply, where I specifically address the B12/IFA test issue.
The B12 loading injections are just to get your B12 up to safe, healthy levels. This will have a beneficial, cascading effect on some things over the next few months, but it will not impact all things. For example, the bone marrow uses B12 to make red blood cells (and other things). When your B12 is low, the bone marrow struggles to make healthy red blood cells. This can lead to a bunch of symptoms, and your B12 injections can help clear up many of these symptoms over the next few months.
White blood cells (WBCs) are created in the bone marrow, but they are "trained" on what antibodies to create when they travel to the thymus gland. In the thymus, WBCs learn what to attack (and what not to attack). These special WBCs learn to make antibodies for the bad stuff, but sometimes they get taught to attack good stuff (like parietal cells or intrinsic factor). Your B12 injections won't teach your body not to attack those good cells. So your actual PCA and/or IFA levels would not be impacted by your B12 loading injections. However, your test results might be impacted. See my other reply.
You mentioned that your iron is "15" — do you know the exact units of measurement? For example, your results might have been "15 umol/L" or "15 mcg/dL" or something else.
For the thyroid, I'll start a new reply.
I want to edit/addendum my comments about how B12 injections may or may not impact further blood tests:
CBC test: Your B12 injections will definitely impact your CBC (complete blood count) test results, because B12 is used by the bone marrow to create blood cells (and more). So your B12 loading doses will positively impact your CBC results. Meaning, if you were experiencing anemia prior to your B12 injections, that anemia may no longer be apparent in your CBC test results now. (Your B12 injections could be helping to address a prior anemia.)
IFA test: As for the intrinsic factor antibodies test, the information I shared (about how white blood cells learn to make antibodies and how B12 levels wouldn't impact how the thymus trains WBCs) is true. However, today I learned that the test to check for IFA levels can be impacted by the B12 injections.
The IFA test is a "competitive binding assay," which means two or more molecules (ligands) bind to the same receptor to help the test determine the level of the thing being tested. So, if your B12 is excessively high (due to the B12 loading injections), that can skew the IFA test results, because of how the test is done.
According to Mayo Clinic (a long-standing, reputable medical research institution):
"Patients who have received a vitamin B12 injection or radiolabeled vitamin B12 injection within the previous 2 weeks may have high serum vitamin B12 levels, which can interfere with this assay leading to falsely elevated results."
mayocliniclabs.com/test-cat...
And LabCorp, a massive, international medical lab/testing institution) says not to do their IFA "immunochemiluminometric assay" test within 1 week of a B12 injection.
labcorp.com/tests/010413/in...
However, according to this thread, there may be a test that was created in the last 10 years that would not be impacted by excessively high B12 — so ask your doctor which type of IFA test their lab is doing.
healthunlocked.com/pasoc/po...
PCA test: The parietal cell antibody test is an "enzyme-linked immunosorbent assay." Mayo Clinic does not indicate any need for caution for this one; your B12 injections should not impact your PCA test result.
mayocliniclabs.com/test-cat...
I hope this is useful to you.
@pante helvella
Thyroid test results
Hi Reembow , here is a little bit of info on the thyroid numbers you shared.
First, after years of blood tests and feeling like it was hard to easily sort through my data, I started using an online app. It's not free, and I'm not trying to advertise for them, but I do want to share the link briefly because of how useful I have found it: selfdecode.com/
I input my blood test results and it helps me see when things are within optimal/normal range, or when things are "sub-optimal" or "low/high." It gives me graphs over time so I can see trends, and it gives me full explanations of what the blood test looks for. If my results are sub-optimal or low/high, it gives me more information on what the cause might be, with links to all the scientific studies it is using to make that determination. I wanted to explain this briefly so that you know where I'm getting the following information. (I will start a new reply after I post this image, so things stay in order.)
When I input the thyroid levels that you shared, the app gave me these results:
This image shows three line graphs for thyroid-related blood tests.
Reembow , looking at the above screenshot, you may see some differences between the results you received from your doctor and the results that the Self Decode app is providing. That is because different labs/hospitals/studies use different parameters for how they decide whether something is too "low" or too "high." Also, your demographics (age/biological sex/pregnancy/etc) can impact what your "optimal" levels would be, so while the Self Decode results can be useful to help guide further investigations, they don't override what your doctor is telling you.
With that disclaimer aside...
TSH (Thyroid-Stimulating Hormone): Your TSH levels show how your pituitary gland is responding to the hormones your thyroid is producing. Your TSH levels go up when your body thinks you need more thyroid hormones. The Self Decode app says that 2.9 mIU/L is sub-optimal because it is slightly higher than the "normal" range. (Again, the "normal" range varies somewhat, depending on which lab you're asking.) Your doctor's test result screenshot shows that they consider the healthy range to be 0.27-4.2 mIU/L, so your doctor says that for your specific demographics (presumably), you are within the normal range. Also you mentioned you were pregnant somewhat recently, and pregnancy can cause big changes in thyroid hormone levels. So more information is needed.
Lets look at the other levels for a moment.
Free T4 (aka thyroxine, a thyroid hormone): This test looks at how much of this specific thyroid hormone is floating "freely" around in your blood. The Self Decode app says that 11.06 pmol/L is within a normal range. Your doctor's test result screenshot says that the normal range is 12-22, indicating that your Free T4 levels are low. (Again, every lab/hospital/study has slightly different numbers for what it considers "high" or "low" and every person has their own demographics indicating what is normal for them.)
A low level of Free T4 can indicate that your body isn't producing enough thyroid hormone — also known as hypothyroidism (hypo = too little, hyper = too much). This can be because of many things, including an autoimmune issue (which might be suspected if your B12 deficiency is caused by autoimmune-related malabsorption). Low Free T4 can also be caused by a recent pregnancy, diet, medications, or something else. Here's more information: mayoclinic.org/diseases-con...
Free T3 (aka triiodothyronine, a thyroid hormone): Just like with Free T4, this test looks at how much of this specific thyroid hormone is floating "freely" around in your blood. The Self Decode app says that 3.69 pmol/L is a low result. Your doctor's test result screenshot says that the normal range is 3.1-6.8, indicating that your levels of T3 are normal. And just like with Free T4, a low Free T3 can indicate signs of hypothyroidism.
Interpretations: Again, I am not a doctor. I am a researcher and a person with autoimmune issues. But for each of these three test results, one lab says your results are normal, and the other lab says your results are not optimal — your TSH is slightly too high, and T3 and T4 are slightly too low. These results could be caused by several things, and again, pregnancies can mess with your hormones (and your body's natural immune response).
However, given that you have a B12 deficiency that is not caused by diet (which means it is caused by either environmental or autoimmune issues), there could be a common thread here. The common thread could be post-pregnancy related. The common thread could be autoimmune related, either because of a recent pregnancy, or not because of pregnancy. Or the B12 deficiency and the thyroid levels might not be connected at all. None of this is helpful, which means...
More tests are needed.
Testing: Several possible tests were highlighted in my prior comment about the possible stomach/intestinal causes of B12 deficiency. Ask your doctor what they think about doing those tests.
But for your thyroid, ask your doctor what they think about doing a thyroid peroxidase antibody (TPO Ab) test. These TPO enzymes help produce thyroid hormones. If you have antibodies to your TPO enzymes, your body might be having trouble producing enough thyroid hormones. It's worth noting that I have TPO antibodies and my thyroid levels are normal, which is to say, you can have antibodies to something and it might not be the real cause of the problem. The specific amount (level) of antibodies present in your blood is helpful in identifying what may (or may not) be causing an issue.
There is another thyroid-related antibody test that you might consider asking for. The thyroglobulin antibodies (Tg) test can help your doctor confirm hypothyroidism (or Hashimoto's disease). There are also other thyroid-related antibodies that could be tested for, but the two tests mentioned above — the TPO Ab test and the Tg Ab test — would be useful since your T3 and T4 are low(ish), and your TSH is slightly elevated. All of these results are (sort of) suggesting hypothyroidism, so it may be useful to rule that out.
I hope this was helpful, and that your doctor works with you to help you find answers soon.
Pante helvella
Thyroid test results
How do you guys get actual copies of your blood test results? My surgery don't ever give a printed version, they tend to get snotty if I ever even ask for the numbers to be read out to me that I can write it down myself 
Apparently having the numbers "turns the patient into doctor Google so is not needed" grrr.
However snotty they are, it is still your legal right to have them.
If you are in England, the NHS app should allow you to access them.
helvella is correct. It is your legal right to have your test results made available to you. That includes blood test levels, images, biopsy results — anything and everything your doctor tests you for, you have a legal right to view. This is true if you are in the USA also.
It doesn't matter if the patient becomes "doctor Google." Doing your own research on your own body using the information gathered during testing is both important and essential to being a good advocate for your care. Any doctor that is trying to prevent you from accessing your medical data needs to be reported. Let them know you will be doing so if they do not provide you access to (or copies of) all your medical data.
Doctor Google did a much better job for me after 2 years of worsening neurological symptoms following poor nutritional B12 supplementation advice from a doctor - advice that if I'd continued to follow , would eventually have killed me. I would advise everyone to get copies of their results. Obviously you need to be careful not to jump to conclusions on numbers without learning and discussing with those who have experience reading what the numbers mean but there are many cases of clear out of range results being overlooked or pooh poohed by doctors while a patient's health declined. As other mentioned, you have a right to the results, don't be fobbed off. Taking charge of your own health is more work and research but the payoff and peace of mind is significant.
I'm in the US, and all of our test results are put online in a medical app tied to my doctors. There's different portals for different doctors and a lot of times they tie together but sometimes they don't so I have to log into four different places to look at my different records. But everything in the United States is online and you can print it out. You have every right to ask for all of your medical records. You are your best advocate for your own health. Dr Google has been my life saver.
hi Reembow,
I noticed that your vitamin B12 levels are sitting just above the normal limits, do you have symptoms?
Of more concern is your vitamin D levels which were also suboptimal in 2019. Do you have symptoms?
When my vitamin D levels were very low, I had very painful feet.
Do you wear an Abaya and headscarf when you are outside?
Vitamin D deficiency is very common in women and babies in Arab countries because women cover up in the sun and tend to keep new babies at home to protect them from the heat.
This is all very understandable in very hot countries and of course culture and traditions.
You could ask the doctor to check the baby’s vit D and start both of you on supplements.
If your doctor has established a Pernicious Anaemia, I assume that you are being treated with B12 injections?
Are you currently taking vitamin D? You mentioned taking Folic Acid because of your pregnancy but we cannot see your results for Folate, Iron and Feratin.
This is important because you will need to replace everything that your body needs in order for you to feel better. More importantly, vitamins and minerals rely on each other being at optimal levels in order for you to be healthy. Therefore, replacing some and not others won’t make you feel better.
Ask your doctor for a vitamin and mineral profile and start to feel better soon.
Hi I do believe I have symptoms. The tips of my fingers have sometimes burn when I touch any metals. Sometimes not always. Also sometimes in extreme heat I feel a weird feeling as if little fishes are going up and down my legs. And I’ve had anxiety on and off since I was 19, so mental health also
Random question: have you ever fainted or collapsed?
I went through a phase where after delivery where I would wake up feeling very dizzy and as if my heart was beating really slow. I sometimes feel faint but only if I miss a meal or my sugar levels go down. I have symptoms of hypoglycemia sometimes. I think it is what you call “insulin resistance” ..
Okay, this one is important: please have your doctor check for signs of “adrenal insufficiency” as soon as possible.
It’s great if you do not have any issues with your adrenal glands. But you have a B12 deficiency, signs of hypothyroidism, and symptoms of feeling dizzy (after birth, when your body is recovering from a major “stress”), plus feeling faint if you haven’t eaten, plus weird sensations when you are in extreme heat…
All of this, to me (not a doctor!), suggests autoimmune issues. And if you have (autoimmune-related) adrenal insufficiency, that can cause big problems.
I tested positive for 21-hydroxylase antibodies last month. This means my body is attacking parts of my adrenal glands that make cortisol. This interferes with the body’s natural response to stress. So when my body experiences “stress” (like you when you are in extreme heat, or when you haven’t eaten, or when you were recovering from giving birth), my cortisol is too low to help manage my blood pressure or regulate other body systems.
This might not be a thing that is impacting you. But to me, the variables you’ve mentioned add up to “it’s worth making sure your adrenal glands are working normally.” I’ll attach a link and image below, if useful. I hope you find answers to all your health questions soon.
mayoclinic.org/diseases-con...
A screenshot showing adrenal insufficiency symptoms.
that is so interesting! At the time I didn’t understand what was happening and I went to get an ecg done because I felt like my heart might not have been pumping properly … God willing i will try to get tested for adrenal insufficiency.. it sounds super scarey … thank you for all your efforts … what is your background may I ask and if you don’t mind how old are you lol
no, that’s not insulin resistance
hi @mauschen please elaborate if you don’t mind
hi Reem,
With the greatest respect, I think you are digging too far in a mine field of information.
The majority of people on this website have been diagnosed for many years and investigate new things as they present themselves.
Newly diagnosed people are mostly looking for answers to understand the way they are feeling.
You are jumping between 2 scenarios.
1. The way you felt during pregnancy and the blood results at that time.
2. The way you feel now and the blood results associated.
While your history is very important, you cannot compare directly because in one situation you were pregnant.
Pregnancy related Insulin Resistance is different from the insulin resistance you might be diagnosed with now.
If you feel hypoglycaemic now when you miss a meal. Then eat something! It’s normal for blood sugar to dip in these circumstances.
Concentrate on how you feel now and don’t compare with the post natal period when your hormones were all over the place.
If you are carrying too much weight around your tummy, this can predispose you to insulin resistance.
You are of child bearing age. Concentrate on returning your body to a healthy state.
Look at your diet and how it might be improved to prevent you from becoming vitamin and mineral deficient.
Engage in current treatment and ensure that you and your children are exposed to 20minutes of morning sunshine (before 11am). Have a walk every day, a chat with friends and a good laugh.
Theses things cost nothing but will make you feel better.
Give your doctor a chance to treat you and let’s hear how you get on.
💕
hi mauschen thank you for your response. The reason why I am digging is because for the last 4 years I have been from doctor to doctor trying to understand the dizziness and the fatigue. For the most part the doctors would just ignore my complaints and I would become so frustrated and more tired. I actually am so grateful to all those who have replied to me in this thread ! It made me feel so warm and special because I felt like I was being listened to and the pieces of information that I have shared have been put together. Like a puzzle being solved. It has meant so much to me and I feel very thankful for it. When it’s been several years back and fourth between doctors who don’t listen, this forum is a miracle x
You are correct Reem, this is a super forum and there are people with academic skills, knowledge and information to share. Equally so, there are self taught people out there with very real lived experience.
No one wants you to have Pernicious Anaemia or a B12 deficiency caused by your lifestyle or other factors. I would imagine that we all want you to feel better.
Dizziness can have many causes and your doctors won’t be able to pinpoint a cause, especially when you have other symptoms suggestive of a vitamin/mineral deficiency and perhaps a metabolic imbalance?
If you read the many stories shared, you will realise that we all presented with many strange symptoms. Symptoms I might add resonate with your story which is why many of us have suggested asking for treatment.
All I am suggesting, is that you let go of the symptoms of the past and give the current treatment a chance to work.
We do care about you and we want you to feel better as soon as possible.
Many of us have gone from doctor to doctor seeking a diagnosis . This is probably because there is generally a lack of understanding about B12 deficiency.
Unfortunately, that’s very unlikely to change anytime soon which is why forums like this exist.
All I am saying, is give your treatment a chance to make you feel better. Make your next decisions from a better state of health. 🌷💓
it would appear that you do have symptoms which fit the profile of both vitamin D and B12 deficiency.
If you are getting treatment, it might take a few weeks for you to feel better.
Everyone has mental health issues during their lifetime. Some more so than others.
For women, hormones play a big role, especially after having a baby or as someone else mentioned, during the menopause. At these times, your hormones levels are adjusting and levels of anxiety, even depression can shoot up and down.
However, if you feel that you can’t engage in the daily activities that you used to, then it’s time to seek medical help.
One of the causes can be B12 or vitamin D deficiency . Which means that life can improve with replacement of your vitamins.
Why don’t you give your supplements a few weeks to start working and come back and let us know how you feel.
It will be interesting to hear if the wee fish are still swimming or some people describe it like ants crawling under the skin. Personally, I prefer your description 😀
I hope you feel better soon and please let us know how you get on in a few weeks.
Xx
yes the little fishies come out when it’s super hot which is not always might I add. I was around 19 when this started, but only went to a neurologist after delivery since I did get them a few times indoors when not exposed to the heat so I found it a bit strange. That’s when the dr figured out that I was b12 deficient ( was still higher than 77 ) …. And I remember going from dr to dr telling them that I was dizzy and they didn’t suggest that I do anything.. one dr had me do a 24 hour blood pressure test (the one they leave on you for 24hours) to check my blood pressure
I have just clicked on your results table and can see more now.
The B12 results are in pmol/L but the reference range does not contain a descriptor for the stated values.
Vitamin D levels contain descriptors in both sets of values which is strange.
I see 16 results in total. It would be helpful to post all of your results in order to get the best advice.
Take a look here for some information:
so many replies and hopefully they have proved helpful.
B12 lasts 2-3 years for the majority, not 5.
It tends to fall off of a cliff edge, so I understand so, you are likely to have been deficient for around 3 years, or perhaps heading that way.
Hi,
I hope you are getting support from those around you...it can be hard for people to understand what B12 deficiency does to people.
Sometimes doctors and other health professionals struggle to understand.
When you had your baby, did you have gas and air mix, sometimes called entenox during your labour to help with pain relief?
Gas and air mix contains nitrous oxide. Nitrous oxide turns B12 into a different type of B12 that the body cannot use.
You may want to search online for information about nitrous oxide and b12 deficiency.
I've just read that you didn't have nitrous oxide during your labour.
A few links that may be helpful.
Some links may have details that could be upsetting to read.
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.
PAS membership is separate to membership of this forum.
Testing for PA
pernicious-anaemia-society....
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort
(Dutch website with English articles)
stichtingb12tekort.nl/weten...
B12 Institute - Netherlands
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper started 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.
B12 article from Mayo Clinic in US, aimed at researchers and health professionals.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions (wrong ideas) about B12 deficiency that health professionals may have.
It might be helpful for you to see if there are any national or regional guidelines on treating B12 deficiency in your country.
I am not medically trained.
Thank you so much ! I really appreciate it. God willing I hope we are able to figure it out so that at least we can start with a treatment plan ….
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