In May this year my routine B12 blood test was 240 (range 170 - 800) with the lab commenting that less than 250 can be considered a deficiency in a symptomatic patient, especially the elderly. Because I have been very fatigued for a very long time (the reason for my clinic visit), my GP started me on Hydroxocobalamin 1,000 mcg once a month for 3 months.
Now 3 months later, my followup blood test a week ago was 1231 which my doc said is 'very high'. She has stopped the injections, told me not to take any supplements and booked another blood test in 3 months time. Does this sound reasonable? I was only just starting to feel better, in the last couple of weeks before the final 3rd injection! And now I'm starting to feel fatigued again. I realise that a level of 1231 is high and well out of range, but as I said I was just starting to feel a bit better and now I feel the rug has been pulled out from under me.
My background is that I have been taking oral B12 supplements of 50mcg 3 times a week for several years. Back in 2015 my level was 458, then 323 in Feb 18, 277 in Oct 18, and finally 240 in May 19. So a slow and steady decline. in early 2016, as part of a panel of tests investigating stomach problems, I had a Gastric Parietal Cell test and an Intrinsic factor test which were both negative. Endoscopy showed mild gastritis.
I was diagnosed with Hashimotos Thyroid ten years ago, with high anti-thyroid antibodies and high antinuclear antibodies. I am 63 years of age, and wonder if I have PA, especially in light of my thyroid disease. How would I know? The reason I don't feel confident to rely on blood test numbers, is that even though my thyroid is apparently well controlled, with T4 at the high end of the range and TSH in the low end, and the docs insist I cannot be feeling hypothyroid, I actually do. I have a slow heart rate, feel cold all the time, as well as fatigued.
I am healthy in all other ways. Can I still be B12 deficient with a level of 1231? Is it possible that B12 deficiency or PA or thyroid disease or a combination of all, causing my fatigue despite blood tests say no it's not?
Sorry this is so long, thanks for reading.
Written by
chicolini
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Your b12 levels will be high if you are having the injections, I would ask your doctor or nurse to explain this to you, and also insist you can carry on with them especially if the injections of b12 help. Good luck
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I am not medically trained. More B12 info in pinned posts on this forum. I have some very detailed replies recently on other threads, may be worth searching for them.
Sorry your Doctor is not correct in saying you cannot have Hypo symptoms with those results for thyroid - without the T3 result. T4 is a storage hormone doing little in the body. It needs to convert into T3 - needed in every cell of the body. It is low T3 that causes symptoms.
Hashimotos trashes absorption of vital nutrients so it would help to know your levels of Folate - Ferritin - VitD. All need to be optimal for your thyroid meds to work well. How much levo are you taking ?
I am a member of Thyroid UK here on HU - many of us are on both - lots of good advice there too !
Your GP should also know that once supplementing B12 - your levels will be raised and further testing is of little value. ( As laid down in the Guidelines )
Thanks Marz, Folate, VitD, Ferratin are all good. , and I take D3 supplement daily. I take 75mcg Synthroid daily, early in the morning 2 hrs before eating. Im not taking B12 supplements anymore, since I started the injections, and doc said not to take any from now on,, as we need to see what the blood test at end of November says. I dont know where to turn re the T3 . My T3 has always been below range and none of the 3 different GPs I have had in the past 10 years have been interested in that. I have tweaked my dose numerous times to try and get T3 in range and have never succeeded. Finally I asked to be referred to an endo, but in NZ you can only see an endo thru the health system, if you are referred by a hospital physician. So I was referred and saw him and he totally dismissed me and refused to refer me to endo. He was able to actually see my low body temperature and slow heartrate, but he dismissed them as within normal range (in the ams my temp is usually 35C), on the day I saw him, it was 36 (as high as it ever goes). He had to accept my slow heart rate, he just diagnosed bradycardia and shrugged it off as normal. I have fatigue, dry skin, am always cold, plus the slow heart and low body temp. over the years these have been dismissed and I have been fobbed off, and of course now that I am over sixty, they are starting to say "it's to be expected in the elderly".
I suggest joining Thyroid UK here on HU for good advice. Many of us self medicate and support each other. Currently moving countries so a little busy to write more !
Hi again, so I have just had the blood test to follow up my last test in August which was 1231, after three B12 injections over 3 months. It is now 429 (range 170 - 800). So its dropped by 800. I wonder then, where does all the B12 go? I always thought B12 was stored in the liver and lasts for years there. I realise the 1231 was well out of range and high, but should it drop down to 429 in under 3 months? And if it drops 800 in that time, does it follow that it will continue to drop? I was told not to take supplements between tests, so I haven't taken any. I was eating food products with added B12 though. I would feel happier if my level was up towards the top of the range, not just in the middle. To be honest, I was only just starting to feel a bit better energy-wise, after the last injection in August. Now I feel back to square one with fatigue. I dont know what my doc will want to do., With my level now well in range, she might not want to give more shots. Anyone have a similar situation and outcome?? Thanks.
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