Hello all, please will you offer suggestions. I am prescribed T3 (20 mcg am, 10 early pm + 10 mid pm) and have been okay for years. 6 months ago I was very ill with something (just lay on sofa not eating or drinking - grown up family said they thought I was just going to lie there and die!!!) and have gone from before the illness enjoying long walks with my young dog, quite often trotting or even running with her, to only managing much slower walks and being exhausted by the end of the day. I had been improving until a couple of months ago when I declined further, now, for instance, I may make myself a hot drink in the evening and put it on the mantelpiece but then find it's too hard to move from the sofa to fetch it so go to bed thirsty. From doing normal things like cooking a few times a week I now mostly sit and listen to the radio and sleep a lot in the day.
I have many of the symptoms of B12 deficiency but now have a problem with diagnosis. Once I realised it could be B12 deficiency (I have been vegan for around 20 years and stopped supplementing when B12 was found to be way above range) I requested a B12 blood test. Surgery said not without an appointment so I had to wait for the appointment and then once seen wait for a blood test appointment, altogether three weeks. I did not want to risk 3 weeks without B12 if I am deficient since some of the neurological damage can be permanent so asked for the blood test to be done before the appointment - declined. I therefore started B12, which I told my GP, who is very kind and seems very caring, but I didn't remember to tell the nurse when taking the blood. Apparently the results have come back 'normal' (I can't be certain because it's a new surgery and I am still waiting for access online to test results and don't want to be labelled a nuisance patient so am being patient).
Can anyone please suggest what I need to do since I think the 'normal' is inaccurate as I was taking B12 but being new to the surgery I really don't want to start telling the GP this kind of thing, I really don't want to start off on the wrong foot. I am pretty certain, from the questions he asked, that the GP thinks I had covid 6 months ago and have long covid which makes me want to curl up in despair and cry because I had undiagnosed underactive thyroid for so long, which was diagnosed as ME. My TSH was over 95 (range 0.5 - 9) with 95 being coma level before I finally persuaded my GP to refer me. I have loved being well, even though I can do far less than others my age, it's been so, so much better than before. How can I tactfully handle this? Is there a way to test for B12 deficiency even when taking it, say tissue testing or something?
(I do realise I might be wrong and the GP will be assessing differential diagnoses so there may be no problem, but all the same B12 deficiency seems highly likely)
Thank-you all
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thyr01d
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Looking baack on your previous posts you are vegan and have had low ferritin for a long time. Do say if that has changed. What are you doing to raise ferritin?
Have you had all your levels tested recently, if so what were the results?
What are you supplementing with?
We need OPTIMAL levels of all key vitamins for our thyroid hormone to work well.
For accurate testing of B12 you need to be off all supplements for 3 months.
Hi Jaydee, I took prescribed ferrous fumarate for 2 years and the ferritin level barely changed. I take iron every other day (said to be better than daily) and love leafy greens, avoid eg spinach and dried apricots other than with vitamin C so they don't impede absorption of the iron. The iron comes with vitamin C and I take a little extra. I take enzyme digest, supplement D in winter, magnesium calcium and K3, iron, C, B complex and now B12 as well.
I have recently had blood tests but don't know what was tested, have a telephone appointment with the GP on Tuesday and as mentioned cannot yet see my test results online.
I know about being off supplements prior to testing B12 but explained in my post that I did not want to take the risk of neurological damage when the blood tests were not going to be done for 3 weeks. With hindsight the obvious answer would have been to test privately but I am struggling with thinking clearly at the moment.
I would get an active B12 test. That way you could tell how much B12 is actually being used by your body even if supplementing.
Try and find out what the actual result of the B12 test is and where it sits in the range. If it's low or mid-range with supplementing it suggests it would be much lower without.
You can request one from the GP but they may refuse. You can get it privately - I got mine with Blue Horizon. I think Medichecks also do one. I had it done by blood draw at the doctor's laboratory walkin clinic in London and a private hospital the second time.
If the results of the active B12 are low then you have really serious B12 deficiency. You could go back to your doctor and explain that the last test didn't show how much B12 you are absorbing and that you suspect you could have pernicious anaemia. And a doctor really can't look past a low result on an active B12 test. It's possible they may even agree to give you a short course of B12 shots.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Thank you SlowDragon. Sadly it's not as straight forward as it sounds. To my surprise my endo found that my B12 was very high, way over top of the range, a few years ago when I'd been vegan for nearly 20 years, so I stopped supplementing. Likewise neither of my daughters is ever low on B12 and one has been vegan longer than I have. Now I realise, as you say, I should have monitored levels.
If one type of iron doesn't work for you then you need to try a different type. For hypo people although foods can make a difference, due to our low stomach acid we do need to rely on supplements when levels get low.
Which B complex and B12 are you taking as it's important to use an active type with a high amount of vitamin?
Get hold of your results in a printed form and post them here, otherwise we are just guessing.
In future, when you are supplementing it doesn't matter if your B12 goes over range. Any excess is excreted via your urine and its not an issue at all as its water soluble. You need that B12 daily regardless.
low ferritin symptoms
I think we need to see your thyroid panel. Your condition may have gotten worse and you Kay just need more T3.
Yes, that's worth exploring, although since my thyroid was, according to the excellent endo I am lucky enough to have seen, "doing nothing" and since TSH was over 95 I don't think my condition can have gotten worse. I can't see more T3 being prescribed, I'm already on more than the endo is happy with, but I think I'm so tired I am only seeing negatives. It's that circle - if I had a little more energy I could be more active in pursuing good health, but I'm sleeping through a lot of the day (and night) and my poor brain is so weary I can't think up a tactful way to handle this situation. I really, really want to remain on good terms with the surgery.
I don’t think a historic TSH is all that relevant now tbh.
I think if you want to know what’s going on you need a full thyroid panel, otherwise this is all just guesswork. Surely your excellent endo is monitoring all your levels regularly?
Hello again and thanks for your quick reply. I think the relevant bit is that I had undiagnosed Hashimoto's, the endo believes, for decades and so my thyroid cannot do anything, he doesn't test TSH. I have not had an appointment or check from the endo for about 18 months, he relies on GP's tests. As mentioned I don't yet have access to online test results and feeling so tired I don't have the will to drive all the way to the surgery and obtain a print out. GP has just run bloods and will ring me on Tuesday so I may be able to give more information then. I don't feel the way I did with thyroid tiredness and do have loads of the B12 deficiency symptoms and along with having being vegan for so long I think that this is far more likely to be the cause. Really though, what I'm hoping for, is a tactful way to handle the B12 situation.
OK, ideally you’ll get a proper full thyroid panel from the GP and not just FT4 and TSH. I don’t completely understand the problem. If your results come back with B12 deficiency then you just need to supplement or begin eating meat again, does the doctor need to be involved in that? 🙂
Hello again and thanks for continuing to think about this. The problem is that I began supplementing B12 before the blood test therefore the test results will not show a deficiency, even though I am sure this is the problem. I would like to be sure of the cause of the symptoms I am experiencing, as many are neurological, and not be guessing or supplementing B12 when there's no deficiency, because if that's the case, I will not get better. But how do I put that to a GP who wouldn't agree to the B12 test before an appointment without causing offence? The GP would have to eat a little humble pie. Have I explained better now?
I am so sorry but I still don’t see the issue 🤦♀️ sorry if I am being slow. If you are now supplementing B12 because you believe you have a deficiency then why are you worried? You are now supplementing so you’ve already begun to remedy the situation, does the GP need involvement? It seems like there is no further action needed?
I don't think you are being slow and thanks for caring. The thing is, it may not be B12 deficiency in which case taking B12 won't help and could leave me worsening. Or, it could be an intrinsic factor problem which is very likely since a GP about 20 years ago said there was an immuno problem related to my stomach that needed monitoring. I believe that will have been masked by taking B12. Has that made it clearer? However Alanna suggested I have an active B12 test and I think that is the answer, and perhaps the NHS will do it. After Tuesday when I have a phone appointment with the GP I may know more, including test results.
You have explained yourself perfectly well but, in this instance, patience would certainly have been a virtue. You are where you are now and the only conclusion is to see what your B12 level is after supplementing. Come clean with your GP, tell him you were worried about waiting so long for a blood test that you decided to supplement anyway, it’s all you can do.
Hello Gingernut, I think you have said something that's helped. I have been assuming that my GP knows because I messaged the surgery (that's how it's done) to ask for the blood test to be done before the appointment (I had only requested a blood test anyway not an appointment) so that I could delay supplementing and the message came back that the doctor had said no, the blood test would not be done until after the appointment. Your question has made me realise I am assuming my own GP saw my messages and explanation but it will have been triaged so he may not know. It wasn't lack of patience that made me start supplementing but the possibility of permanent neurological damage if I delayed for three weeks.
I do understand your worry but I don’t think 3 weeks more would have made a great deal of difference. All you can do now is hope he understands it all.
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