I have PA, diagnosed 2008, but did not start treatment until 2017, because my levels were always good.
I also have Hypothyroidism. And have been treated for 9 years.
I recently had a blood test my B12 was 2000. And my Ferretin levels were 40.
I have read that the B12 should be 2000 and that Ferretin should be 80 for my Thyroid to work properly.
Does anyone have any information on what levels should be.
My doctor sent a message to have my B12 injections at four months after my last one because my B12 levels are high.
I also have double the amount of Red blood cells than the dance says. Mine are over 10 and the range should be under 5. And I don't know if that is something to do with high B12 levels, if they are high.
Sorry for the long post.
I would be grateful for any advice on my levels.
Thank you in advance.
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Mannequin18
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Hi Mannequin18 what frequency of B12 injections are you on at the moment and are you coping OK at that? Do you feel the need of the injection in the run up to the next one?
Having high levels of B12 in the blood is inevitable and poses no danger at all as any excess is excreted via your urine. Click on the link below:
I think your doctor is wrong - having a "knee-jerk reaction" to the high level - and you must tell him if you have neurological symptoms returning now or in the future.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
Is your doctor going to look into your red blood cell proliferation? I think that's the bigger problem. What are your hematocrit and hemoglobin numbers?
"Many individuals with polycythemia vera slowly development a variety of general, nonspecific symptoms that are common to many disorders such as headaches, fatigue, weakness, dizziness, excessive sweating especially at night, and itchy skin that, in severe cases, may be worse after taking a shower or a warm bath. Additional symptoms may occur in some affected individuals including blurred vision, ringing in the ears (tinnitus), and abnormal redness of the skin especially on the face."
"A diagnosis of PV is considered if the patient’s red cell count is elevated. Three measures of the concentration of red cells in the blood can be used to diagnose PV: the hematocrit, the hemoglobin concentration and the red cell count. These measurements are included in a standard blood test called a “complete blood count” (CBC). Blood counts are usually measured in a machine that simultaneously measures the hematocrit, hemoglobin concentration and red cell count, and these three measurements closely parallel each other.
For example, in a patient with PV, if a normal hematocrit concentration of 45 percent is increased by one-third to 60 percent, the corresponding normal hemoglobin concentration of 150 grams/liter (g/L) of blood would also be increased by one-third to 200 g/L of blood. The corresponding red cell count would be increased by one-third as well. Thus, for diagnostic purposes, any of the three measurements could be used."
My doctor hasn't requested to see me at all. This is the second blood test in 6 weeks, and the other one was the same result. I have at least 4 symptoms that you have listed, I also have stomach erosion which is agony, and was prescribed Omeprazole. But I am reluctant to take it because I have low acid due to PA.
I will check my blood results against your very helpful Information, and make an appointment to see my doctor. If I get somewhere, I will post on here.
Hi genesurf. Saw my GP today. I was right to be worried. Because my B12 levels are high, he is going to test me before giving me an injection. He wants my levels to come down. I told him that I always had high levels even before injections, I don't know why that is, but that is how it was, hence I did not get treatment for 8 years, even after being diagnosed.
And now it looks like I am going back to square one. He also said that if it were him he would not take the B12, because you don't need all these vitamins, so clearly he must think that B12 is just ordinary vitamins.
My levels will be high and I won't get my injections.
He also asked me if I had ever had any depression in the past.
I have just written him a letter about my disappointment, and telling him that doctors have moved on from the 50's, and that women really do get ill, and it is not all in the mind.
I really had a rant.
Surely, he cannot take me off something I need. There must be someone to turn to in these situations.
I'm so angry.
He was ready for me, so he knew I had been checking my test results on their web site. He had everything up on his computer before he even knew what I went for.
He just said all my levels were normal. I downloaded my results from their web site, so I said that I would send him a copy, because he clearly had a different one from me.
I will see anther doctor. Why do some do good for you, and others want to change it.
This is always subjective. It does depend on each individuals overall health. Plus we all have to be careful not to over-do a good thing. Here is a great article to highlight the paradoxical side.
I believe high b12 levels are only a concern if you are not supplementing or having injections. In this instance it indicates the body is not processing b12 correctly.
You would expect to have high serum b12 levels if you receive injections.
Hello Mannequin18. I think others here have answered you pretty well so I won’t stick my oar in. 3xcept that I’m intrigued by something. You say that for the thyroid to work properly B12 should be 2000 and ferritin 80. Do you know where you got that info? I have had PA for some time, though I lack a diagnosis currently. A blood test a few years ago indicated I was sub clinical hypothyroid. I’m pretty sure it’s packing up. My sister has hypothyroidism. Symptoms of B12 def and hypothyroid seem quite similar. I am wondering whether getting ferritin and B 12 levels up to the values you suggest would sort my thyroid out though... hmm.
I've also read your ferritin levels affect thyroid function. My daughter is borderline hyporthyroidism . What I read was good ferritin level eg 70-100 helps keep your thyroid healthy. I asked her to get ferritin levels checked on next blood test. I haven't read about b12 levels. That is very interesting as she is on 3 monthly b12 injections. Certainly worth looking into. Would definitely aid the awful fatigue. Let's hope so for everyone concerned
Hi, yes I read on the Thyroid UK forum that ferreting needs to be 80 for propper thyroid function, and that B12 is normal at 2000 when you are having B12 injections.
Are you both autoimmune Hypothyroid and B12?. I am so I don't know if that makes any difference to levels. Good luck.
Good levels of Ferritin are needed for the conversion of T4 into the Active T3. A result around mid-range is good. Also mid range for Folate. 500 for B12 and 100 for Vit D.
Did you have FULL thyroid testing - TSH - FT4 - FT3 and Anti-bodies TPO & Tg. Rarely are all the tests done in the NHS. The link below will explain everything Thyroid including information about Private Testing Kits sent to your home ...
Hi l don't know if this helps but l also think your GP is wrong, I'm a member of the P/A a few years ago, l found on their site a B12 trial at Cranfield University, to see how often l needed the injections, it lasted 2 years and at the end of it, l have my injections every month, l do feel better, as for high range this or that any excess B12 you wee out any excess that your body does not need. I think the GPs have learnt one thing and appears to be that, l do from time to time get approached as to why I'm on monthly B12.
It's not dangerous to have B12 monthly I've been having them for years now. There seems to be an awful lot of the internet about it, l stick to the P/A site they are very good.
I do hope this helps. At the end of the day l suppose it's like everything else, everybody is different
Good for you. I've been putting up with drs who don't understand about autoimmune diseases for decades.
In the end, I was diagnosed with 3 different ones by 3 different drs as I have elevated ANA but they couldn't figure out what I had (so they just "guessed")
I don't have any of them but probably PA - strangely no dr thought of that alathough I've been struggling with IBS for almost 30 years now.
I wasted so much time and energy.
Now I've taken charge of my own health and I also order the B12 vials and self inject.
I do have a new GI though who talked about PA (without me mentioning B12d and injections) , she cannot comprehend how no other dr saw this based on the blood results from the past 7 years (instead of giving me wrong autoimmune diagnoses and constantly putting me on the wrong path).
She also wants my thyroid checked. We'll see if she can help me making progress understanding what's going on in my body.
Why don't doctors know about autoimmune conditions?. And why don't they listen to people who do, you would think that they would want all the knowledge that they could get. Makes no sense.
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