should I be concerned?
I’m feeling my best but …: should I be concerned? - Thyroid UK
I’m feeling my best but …
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Noelnoel
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Active B12 is about 54%. High enough?
A little bit OTT and I'd certainly want to boost the B12 up... how are you feeling?
Hello Tigger
I feel good
I stopped taking B12 complex probably eight months ago to try to work out if I’m capable of maintaining dietary levels
Best add that back in then 👍
Trying to ascertain if it’s PA so can’t add it back yet
Ah yes … I see. Hope you don’t feel too awful trying to prove it. A week without supplements sends me a bit haywire 🌱
I've no real knowledge of PA but I thought your levels crash pretty quickly so mid range without supplementing for 8 months suggests a reasonable ability to absorb... no?
I feel good but we’ll see if that continues if/when B12 falls
Why is that? Absorption issues?
I just don’t seem to manage to maintain the internal recycling of B12 from food alone… its job 2 after I sort job 1 which is fibroids 😊
Isn’t it more about absorbing what’s in the food you eat rather than making it from food. Please correct me if I’m wrong
I’ve edited my response sorry I was rushing and didn’t explain myself. There is a super video on the PA forum healthunlocked.com/pasoc/po...
Dr David Morris talks about how much of our B12 is recycled which explains why people without a condition maintain levels from food and others (like me I guess) can’t and need constant top ups and food alone isn’t enough because as you say we don’t absorb enough either.
🌱
When you dont recycle B12 (Like Regenallotment and I) you have nothing in storage . The liver should have stores of B12 that can be drawn upon if needed day to day, if you don't get enough from the food you have eaten that day . If you don't need all the B12 you have extracted from food you have eaten that day the excess should go into storage and be available in times of need. Pernicious Anaemia is where you cannot extract B12 from food and absorb it, sort of thing and is a different problem. These stores should be enough for 3,5 or 7 years type of range.The methylation cycle ,which relies heavily on b12 and folate, should recycle your B12 round and round so that the miniscule amount of about 3 units is all that is lost daily in the urine and faeces. If you have no issue with B12 all you should need per day if supplementing b12 is about 3 units, the typical amount in a multi vitamin tablet. It is to do with methionine and homocysteine and folate and b12. (methylation cycle)It is like a central heating system which has water going to your radiators , going round and round and round. If there is a fault where a leak causes the water volume to drop, you need to top up the level so that there is enough water going round and round to heat your radiators properly. If you can find and fix the leak , you shouldn't need to top up your heating system again. If you can't find the leak you will have to keep topping up the water in your heating system. B12 recycling is like that.
If someone with a perfectly working methylation cycle suddenly decided to become vegetarian and stop eating any food that contained B12, they would not be deficient in B12 for about 15 years. Their intake of B12 would be nil. They would have B12 in storage which would be released to meet their daily needs. They would recycle their B12. They would lose about 3 units per day. It would take about 15 years before they ran out.
There are multiple reasons to have a B12 problem, apart from pernicious anaemia and not being able to recycle it.
Googling B12 is the source of the information over the years and the video Regenallotment referred you to.
I see. Didn’t realise Regenallotment had a recycling issue
Yes, I realise PA isn’t the only cause of deficiency. I’m trying to rule it out because I eat plenty of B12-rich food and wonder why in the past my numbers weren’t too good. It was before I knew better so I blithely started supplementing imagining I was doing myself a favour. I wasn’t, far better to know the reason for deficiency and addressing it in then appropriate way
Thank you for explaining recycling
I didn’t either till I watched that vid recently, he explains it so clearly.
Have saved it to watch
You might never know the reason for the deficiency, to address it in the appropriate way.. Our (REG. and me) B12 drops quickly if not highly supplemented . The video Regenallotment referred you to points out ( I think) that only something like 27% of pernicious anaemia sufferers get picked up when tested. The other 73% are told they don't have it , when they do. If not injecting, which Regenallotment is now, it can take a very long time to get levels up again. What were your numbers like when not too good? The video points out that every patient the doctor has seen who has long Covid suggests that it tanks your B vitamins, especially B12. If have a period of high stress, it is my opinion that you use up a lot in this way.
The other test for B12 is MMA and homocysteine which is a hospital test. Your chances of being referred to test these are probably non existent. It is difficult enough to get a pernicious anaemia test. Most NHS staff believe that if you are deficient in B12 , you can take B12 tablets for 4 months , then don't need them. If at a level of 444 after supplementing they think this is great and you can stop supplementing. My personal opinion is that this is far too low and my level sinks quickly. A G.P. will tell you that is fine as the body will pee out what it does not need. The body should pee out about 3 units and put the rest into storage if not needed, not pee it out. The serum B12 test is b12 stored plus B12 available to the cells. The active B12 test cannot differentiate biologically active b12 from biologically inactive B12. Neither can the serum B12 test. You would need to read the Australian P.A. site and b12 oils .com and watch the video Regenallotment recommended to get a proper idea of B12.
Until optimally dosed for your thyroid you likely do not have optimal levels of b12. If you do not have optimal levels of B12 you cannot optimise thyroid. Ferritin, VitD, folate and B12 need to be optimal to have optimal thyroid levels.
As TiggerMe points out, if your levels of B12 are mid range without supplementing for 8 months I would have thought you do not have PA, but I am not an expert either. I wouldn't think you would have such good levels of FT4 and FT3 either if you had pernicious anaemia, but don't really know enough to say if this is right or not. Are you just on Metavive or T4 too or T4 and T3 too. If Metavive only (I know nothing about this) your T4 and T3 being as high as they are I don't think would be achievable if you had PA and hadn't supplemented B12 for 8 months. I defer to others who know more than me re, this. I am just learning the ropes. You seem to be saying you are Metavive only.
You mention symptoms which could be B12 related.
Thank you Wua for all the info. Some very interesting points to ponder
When I started B12 complex:
B12 263 (211 - 911
Folate 7.4 (>5.38)
Levels rose well quite quickly but I didn’t conduct any tests to ascertain cause of low levels and continued on a maintenance dose not realising there was a possibility of PA. That came much later when we started investigating reasons for my husband’s and son’s low levels. We knew it wasn’t a dietary matter because there’s lots of B12 and folate-rich food in our daily diet. According to Dr Klein husband in B12d likely due to dysbiosis. Waiting for follow up appt to discuss
I also had:
MCV very high but within range
MCHC was below range (possibly linked to my high liver enzymes)
but in my ignorance the above had no significance
IFab is always negative although I know it’s an unreliable test and recent MMA was definitively negative, very low. All good there then but I know none of it is conclusive and I just have a niggling suspicion it could still be PA because most of my ducks are now in a row and have been, more or less, for some time and by that I mean nutrient and thyroid numbers being excellent. Yet the one unattributed symptom of a sore, swollen and cracked tongue, is persistently with me no matter what. Sometimes it’s larger than at others, to the point that I bite it as I talk or eat. It’s really irksome and a total puzzle as to why it never improves. Have had it at least 35 years. It’s very likely due to longterm untreated hypothyroidism but I would’ve expected a small improvement now that numbers (at least) are good although I know that numbers in a lab report don’t always equate to the reality of the disease. Perhaps it needs a bit more time of being well covered in terms of thyroid replacement. I do know it’s working in some areas because for more years than I care to count I’ve been battling weight gain to the tune of 3st and having lost a stone in the last six months, at last(!) things are shifting. I’ve always been very active so it wasn’t for lack of exercise and my diet, apart from struggling to stay away from gluten, has been consistently good throughout. Nothing has changed so it has to be because the exogenous thyroid hormone is finally high enough to its job
Balance not perfect but ok and I don’t have paresthesia in my right cheek any more. Memory has improved significantly but could be much better
Yes, I take Metavive only. No prescription T4 or 3
Very high MCV can be B12 deficiency. I had over-range MCV prior to surgery in 2007 and it was ignored by the hospital and I believe I was B12 deficient then. They would ignore it and write it off to stress. Your MCV is not out of range , like mine was.
Your swollen , sore and cracked tongue is the give away and the key to unlocking your continuing problems. and are symptoms of Vit B2 deficiency. I recommended you read on the Pernicious Anaemia Australian site and B12oils.com site, also Australian. Your answer lies there and is very involved. It explains the interplay of B12, thyroid, folate, iron , vitD and other minerals etc. It backs up the forum advice that 4 core vitamins must be optimal in hypothyroidism, but gives the scientific explanation of why. I have deduced that the amount of B2 in the Thorne B complex is not enough for my needs. Unless your urine is yellow when supplementing B2 , it is not high enough.
You seem to have a very clear indication that you are likely Vitamin B2 deficient. The sites explain that without sufficient B2 , B12 can even show as high in a blood test , as well as low (you were almost deficient), but be biologically inactive. There is no test to show if levels of B12, even if at 10,000, are biologically active or not. FAD and FMN from Vit B2 are crucial in the equation of a healthy working thyroid, biologically active B12 etc, etc,etc
The MMA test you did is linked to the active B12 type adenosylcobalamin. The other active B12 type is methylcobalamin.
Can’t thank you enough. It’s all very interesting. The Oz PAS is proving difficult to find
You may be able to get to it from b12oils.com . I want to join the Pernicious anaemia , Australia facebook site, but don't know how to work facebook.All the info might be on b12oils.com, but you need to work your way through all the sub categories and there is a lot of info. I got to that site by clicking through from a site called Phoenix Rising. I not techy at all!
Will do a blood test first. Found a B2 one by Medichecks who I trust but also found this one by Smart Nutrition
smartnutrition.co.uk/shop/b...
Anyone ever used this company?
£199! Very useful, but very expensive.
There’s a Medichecks one that’s for B2 only which is much cheaper but I may as well get them all checked because I don’t want to start yet another supplement unless I really have to. I haven’t taken selenium, b12 complex, iron, folate or D3 for months which has saved many £s
Fully expect and accept that I’ll need to start supplementing them all again but enjoying a break for now
Will be useful to know if B2 deficiency is responsible for the sore tongue and other niggles in which case I’ll look into whether it’s ok to take B2 without the other Bs. Probably not because nothing’s ever that simple in the PA or thyroid world 🙁
This is a test report from Smart Nutrition/Biolab
I’m either stupid or the reference range is insane. Is it me? It seems to suggest that everything > equals deficient
Black and white
I'm not at all sure why nearly fifteen year old vitamin tests need comments?
😂😂😂 It’s not a real test it’s an example of a report. If you look top right you’ll see it says: Mr Test Patient
I’ve sent it because I’m considering the test but I don’t understand the numbers at all! Why is everything above a certain number, deficient
Because it is not testing what you seem to think it is testing.
It is NOT how much thiamine is in the patient's blood. However, what it is is far too complicated for me to get my head round let alone manage to explain!
Erythrocyte transketolase activity coefficient (ETKAC) assay protocol for the assessment of thiamine status
pmc.ncbi.nlm.nih.gov/articl...
Check all the tests individually.
It’s testing Bs 1,2, 3 and 6 or have I missed something?!!
Yes - you are missing that it is not a measure of thiamine (etc.). The result is an activity coefficient.
Erythrocyte transketolase activity coefficient (ETKAC) assay protocol for the assessment of thiamine status
The result is not "this much thiamine is present". But "is this person thiamine replete or deficient".
Ah, right. Thank you for explaining. Still useful though or not?
I would be wary of using a service that apparently hasn't changed in fifteen years. Surely things have moved on since then!
It’s just a sample report but you may have a point. I emailed on Friday because Biolab Medical Unit rang some (alarm) bells. Wasn’t it in trouble a couple of years ago
Will call them tomorrow. There’s phone number provided
I don't know anything about the test itself. It says "expressed as a ratio of activated to basal activity." I don't know if it is actually telling you if the vitamins are biologically active. If it is that would be excellent. The ETK, EGR and EGOT activation in brackets after each reading might be suggesting that they are measuring biologically active levels? I don't know. B2 needs FMN and FAD to biologically activate.
You would be best to email the company to clarify what the sample test results mean and to ask if it is serum blood levels of B1, B2, B3 and B6 or if they are able to tell if the levels of the b vitamins are biologically active.
It is still of interest to you what your B vitamin levels are, whether biologically activated or not. It is likely just serum blood levels they are testing.
It would be quicker and cheaper to add extra B2 to a b complex and see if your mouth symptoms improve or disappear, using this as a barometer. Bright yellow urine is excess B2 being excreted. If your urine is not that colour you have no excess B2 to excrete. It is supposed to be harmless to excrete bright yellow urine. It is an indicator that the body is excreting the B2 it doesn't need.
You’ve raised some interesting questions, thank you. Will be speaking to them tomorrow
It would be quicker and cheaper but I really don’t want to take something if I don’t need to. As you’ve pointed out I’m very likely B2 deficient but I’d rather know for sure. After all, I’ve been without a B12 complex for eight months now, long enough for them all to go into decline if I’m not absorbing well from food
My diet provides more than enough of the Bs so if I’m deficient I can then be certain there’s an absorption problem
They are all activity coefficients - not levels of the actual substances.
Ah, you have explained it in a reply to Noelnoel.
It seems that a lot of tests done are a bit unfathomable to lay people. An example of this is an Oats or Hair test. I have read somewhere that where there is an over range reading it can mean that you supplement what is already over range. Not something that I would be prepared to do' without the advice of a trusted functional practitioner.
It seems that a lot of tests done are a bit unfathomable to lay people
You’re not kidding!
I see. Know of a test that measures levels?
No - and the paper I linked explains why that would not be a good approach. Therefore I doubt any reputable lab would offer such a test.
Really sorry but I can’t find your link
Eight months! That’s quite a test, how are symptoms? Tingling parasthesia, balance, brain fog?
I’ve never really understood what brain fog is. Is it clarity of thought . If so, I have a bit of brain fog but balance ok. I used to quite regularly get paresthesia in my right cheek but haven’t for a good while now
For me it’s like being hung over mixed with memory loss, at its worst I found myself in front of a class not knowing anything about any of the material I had prepared a few weeks earlier.
That happens sometimes. A family member might mention a film we’d watched together a few weeks ago and I’ll have trouble recalling it until they start going into details and eventually I recollect
It’s troubling and annoying when it happens but it’s not so frequent now
RegenallotmentAmbassador
I’ve had this happen felt blooming marvellous and then within weeks felt jittery, face sweats, anxious, loose bowels etc etc.
my presciber and GP were less worried than I was, they both said stick for 12 weeks and test again. By then I was FT4 28 and FT3 10 same range as yours with the symptoms I mentioned. So listen to your body, if you need to drop 50mcg a week or stop FT3 for a few days, half the dose and build back to 2/3 what you are on now etc and test after another 8 weeks, you are only a smidge over FT4 and FT3 as one of my better GPs said, some people are like that all their lives and are fine. There are long term health risks people like to point out and they aren’t wrong but 12 weeks is a mere blip. TSH often (not always) comes back up a bit after a long time on a stable dose. 🌱
Thank you for your suggestion
A couple of months ago FT3 was over 10 with FT4 much lower but I feel much better since lowering the dose these last couple of months. It’s a bit tricky because I take Metavive so it’s guesswork, trial and error involved. I also want to experiment with switching to pm dosing
Haven’t quite got it right since lockdown when endo instructed me to stop taking thyroid replacement. Stupid of me to have listened. Much wiser now
Could it be that Metavive may not be completely consistent dose to dose?
Or could it be that you have optimised well and absorb better?
My experience of Metavive is that it’s consistent. I think it’s more that I’m finally taking the right combination of bovine and porcine. I take a comparatively small amount of porcine otherwise I feel overmedicated
The 'normal range' only covers 95% of the population. 2.5% are under this range, 2.5% are above this range. You may be one of the 2.5% who needs to be above it. Though to be fair the normal range are a bit iffy as for example they could contain people who are developing hypothyroidism/ hyperthyroidism but are undiagnosed. So not much help really.
When you say you 'feel your best', is this just the best yet, or is it feeling good?
I can't see ferritin or B12 results. What's your ferritin level? It needs to be at least 70 to process the T4, though above range can indicate inflammation. It might be worth doing a rT3 test next time to see if a lot of the T4 you're taking is being metabolised into rT3 instead of T3. Alternatively, you could avoid the expense of having to test if you have ft3 and ft4 blood test results from when you weren't on thyroid meds.
I think you meant to reply to Noelnoel I’ve tagged her.
Thank for tagging them. That's a glitch in the system. I clicked on reply, realised it was replying to you, so I went up to the top and clicked reply to NoelNoel, but it looks liked it still kept the reply to you.
Earlier in this post TiggerMe quite righty asked how I’m feeling because I erroneously thought everyone would understand that I must feel good. That was stupid of me, so to explain …
Physically, I’ve never felt bad, except when overmedicated, despite almost 24 years of insomnia but as you’d expect, it affected me mentally in that I was irritable, lacked concentration and focus, moody and unpleasant to be around. I now feel myself. I feel present and engaged
I don’t have FT3 levels before Metavive. Can you explain why T4 might be metabolised into rT3? Read about it in the past and filed it but of course I don’t remember anything about it now
Test result
”When you say you are feeling your best, is this just the best yet, or is it feeling good”. BB001 well spotted!
Noelnoel your post caught my thinking exactly this morning. I have been feeling pretty bad since I followed a false trail recently, experimenting with dosage and a truly dreadful cardiology ‘contact’.
I am finally back four weeks on my previous longest period of ‘safety’ at 100mcg of Levo.
I am presently “feeling my best”. However BB001 has hit the nail on the head for me. I do not feel good. My symptoms are ‘sufferable’ only.
Thank you both you guys for sorting that out for me. It’s truly much appreciated.
Strangely, I’ve always felt good apart from when overmedicated and then I’m anxious, jittery, trembly, sweaty
Before diagnosis my main symptom was insomnia and even taking Metavive, although it improved significantly it was still bad but I never felt unwell physically, only mentally. Other physical symptoms were weight gain, hair loss, constipation
As I said earlier in this post, I feel good and what I meant by best is that I’m more myself. I’m a better person who’s content and enjoying life and nicer to be around
I hope quite soon you’ll begin to feel much better on your previous dose, not just “sufferable”. Feeling as you do is no way to live but 4 weeks in is early days, as you know, so more improvements should be on their way. In the past was 100mcg the right dose for you and why was it reduced?
No that’s great. I am pleased for you. It’s just it’s such a good question and spooky because I was wondering the same thing at exactly the same time. I was going to post when I saw yours. It allowed me to see that there truly is a difference between the two, on the face of it, questions BB001 .
You too seem to have at least partly answered your own question. My result is I will continue to testing in about another three or four weeks.
I landed in this present mess because (I am almost ashamed to say) I trusted an endo who discussed strategy with me about a trial of T3 and then five weeks later wrote and said he was not going to treat me. So convinced was I by our discussion, I made preparations by lowering my levo by 25%. He said I would have to lower it by 25% or even 50% for the trial. I am sure (as they seem to be on a different planet) as usual they have no inkling that we are looking for a way to get better. We are denied help all the time. I have just seen helvella new post and frankly incensed by it. They are determined not to treat us it would seem. Why? I just don’t get it. Anything that foxes them hurts us but we don’t matter. It’s inhumane.
I too got into a mess because of an endo. I felt really stupid afterwards but don’t beat yourself up, you’ve learnt a good lesson and won’t make the same mistake again
Thing is, we ought to be able to trust them
Why did the endo renege on the deal, so to speak. I hope you got a good explanation
Long story really but he chickened out (even although he had all the details from cardiology in front of him during the consultation). Cardio trumps everyone it would seem. No-one, not even the endo who did the research into the heart/thyroid connection I was reading, had the courage to treat me. The eminent cardiologist freely admitted “I leave endocrinology to endocrinologists”. If only they would take responsibility for their profession and keep up their education, that would be a good start. I could have got any amount of heart drugs/interventions at huge cost to the NHS. Those drugs would have slowed me down even more (I know because I have tried them previously) - totally inappropriate and the intervention offered I can hardly bear to think about. My research says it’s not appropriate for my heart condition. All for the cost of a very low dose of T3. Of course like other non-worked out treatments within the NHS, they are too lily livered to sort it out, therefore the patient gets either ineffective treatment or nothing at all. What a bunch of …..
So what will you do?
Although I am reluctant to self medicate and it’s clearly/frighteningly becoming more and more difficult to acquire certain thyroid meds, it’s my main option. I am presently appealing against this endo’s decision. Whether that gets me anywhere I don’t know. Just working it out as I go along.
I am very apprehensive about supplies running out, doctors and endos insisting on reducing dosages, or even removing meds altogether like helvella post just this morning. It seems our rights in the U.K. are not just eroding they are being ‘disappeared’! Like dead patients etc. Just disappeared - nothing to do with me! Medics are too worried about their own lives and livelihoods to care for patients it would seem.
I usually work on 1:3 ratio for reducing T4 when adding T3, so if you are adding 5mcg T3 you would need to reduce T4 by 15mcg. Endos usually work on 1:4 or 1:5. I can't remember which research I read that this was in. With research, I tend to read it, take note of what's important for me, then forget the rest 😆 including the citation for the research! It was probably from thyroidpatients.ca as Prof Tania Sonia Smith does some good good analyses.
I don’t know if you meant this answer for me but I think Tania Smith is a Godsend. However I really liked PaulRobinson explanation of the same 2019 paper that seemed to say T3 was safe even for patients with ischeamic heart disease. However no medic is playing with that as far as I can find.
I think Tanya was a bit over excited with that paper and her explanations were not quite up to her usual standard (No insult intended Tanya). Totally understandable as this affected her very own case. Me too.
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