I've popped over from the PA forum and would be very grateful if someone would kindly take a look at these results:
TSH - 2.22 (0.27-4.2)
Free T3 - 4.7 (3.1-6.8)
Free Thyroxine - 15.2 (12-22)
Thyroglobulin Antibodies 379 (0-115)
Thyroid Peroxidase Antibodies 39.1 (0-34)
Potted history. Was treated with thyroxin for about 18 months for under active thyroid many years ago. No further thyroid treatment as occasional TSH tests by GP ok and they don't check antibodies as you know. Diagnosed with B12 deficiency and received injections for over 10 years until 3 years ago when the were stopped as don't have PA antibodies and levels show still sufficient. Was really not feeling well last year and a Medichecks blood test showed a borderline MCH level and it was suggested a liver and thyroid check - liver all good, thyroid showed Thyroglobulin antibodies at 451 (TSH 1.42, Free T3 4.3, Free Thyroxine 14.5). A recent test now also shows Peroxidase Antibodies. Would anyone know if these could make me feel unwell? Many thanks.
Written by
Tanitha
To view profiles and participate in discussions please or .
Test was done at just before 10am. Vitamin D was 82 (50-200), folate 24 (8.83-60.8) and ferritin 131 (30-650) but not full iron panel. Age 63, good diet - eat good quality meat, fish and veg, cook from fresh (hardly anything processed), moderate amount of red wine, non-homogenised milk.
Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden
Not taking any Vitamin D, thought it should be naturally a bit higher at the end of summer.
Had a diagnosis of PA however now disregarded due to no PA antibodies. Was really well on injections but as that is no longer an option I feel the only option is to try to get a bigger picture of what may be going on.
I will read through what you have recommended, thank you. Three main problems - brain fog, tiredness and shortness of breath. All pretty vague I know but quite debilitating. Was wondering if there may be a diet which would help reduce antibodies to see if I could get back on track.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Injections won’t be considered. I haven’t supplemented as wanted to try and see what was happening naturally it’s just impacting more than I’m comfortable with. I don’t tolerate cyanocobalamin very well - strangely it gives me a cough. I’m also extremely chemically sensitive - however again this reduced considerably on injections. I’m quite clued up on the B12 side but think there may be some connection with thyroid. Your point about Thyroglobulin antibodies and PA is interesting - I hadn’t been able to find a reference number to compare how high mine were and was pleased they had reduced since the last test. It hadn’t occurred to me they may be “quite high”. At least there is evidence there is something going on,.
I tolerate Spatone quite well so shall start on that tomorrow. Thank you again.
Its a shame that you can’t have b12 injections it sounds as if you need them. If you supplement with them now with capsules etc. they will skew your blood results for months and docs will consider you ok. Just something to be aware of depending on which way you handle this. You’ve come to a great place here. Good luck.😎
This is what I'm considering Mary and at the moment am leaning towards seeing if my b12 levels keep dropping whilst keeping myself as well as possible. I don't know whether I had antibodies when on injections either, just that my symptoms are a little different - in particular a few short episodes of anxiety which I have never experienced before and am keen not to repeat. Perhaps b12 injections kept thyroid antibodies at bay? Perhaps my thyroid is the issue. I don't know. Initially think I shall look at maintaining Vit d levels and increasing ferritin and see if that helps with shortness of breath which is my most physically debilitating symptom. It's hard to believe I have a diagnosis of PA on my records but that is now being ignored as I don't have the 'required' PA antibodies. Skewing the numbers would certainly ensure I never received the correct treatment. If I drop back down to deficient I would be entitled to receive loading doses and from previous experience know it would put things right if there is nothing else going on. The diet I consume is rich in b12, iron and folate so levels should be maintained naturally. Many thanks.
I can't take cyanocobalamin supplements or injections , I get side effects and don't absorb the cyano synthecized B12 anyway.
If you do choose to add in some supplements to your diet taking the simple active B12 Methylcobalamin can help for those with intolerances and absorption problems that are not totally caused by PA. I have found this through trial and error as well.
One of the few B supplements that uses Methylcobalamin is Holland and Barrett B complex tablets . Oddly , they still choose to use cyanocobalamin in their single Vit B 12 supplement.
Another tip is to be sure you take your B 12 supplement with food but no Vitamin C food or products , as Vitamin C can reduce of absorption of B12 for some people. Its a good idea to have one meal a day rich in Vitamin B12 with no vitamin C in it and take your B12 supplement with that.
For other supplements , including Vitamin D , C, and K and iron , it's best take them after your fattiest meal of the day with a vitamin C drink to get the most absorption of the fat soluble vitamins and iron. Its good to take your full vitamin and mineral daily supplement with this meal each day as well.
Additional B12 , Active Iron , K2 and Magnesium are good to take daily even if your health balances again if you have suffered symptoms from deficiencies in these in the past , and if you have any other chronic health condition , including thyroid problems.
Often , with metabolic health issues or commonly undiagnosed absorption problems , even the best diet in the world still won't give you the average amount of daily nutrients you need. I've learnt this over the years .I have a great diet , adapted over the years to benefit all my health issues, and spend a lot of time outdoors, and I already took a daily supplement but have still been diagnosed regularly with Vitamin D deficiency , anaemia and now B12 deficiency anaemia.
I now also use Better 4 U Vitamin D , K2 and Magnesium spray and an extra D supplement prescribed by the GP . I use Solgar Gentle iron on a double dose , as it is easier to absorb and doesn't cause the stomach problems of other iron tablets. The GP also agrees with this as oddly , the only way you can get the active iron on the NHS is via hospital with certain conditions.
Drinking the recommended amount of water each day is also vital with metabolic problems as even if you aren't thirsty internal dehydration makes all illnesses worse because you need the water to help with movement if nutrients in the blood stream and messaging across the blood / brain barrier.
You can have Hydroxocobalamin and in some cases Methylcobalamin as your injection. I have Hcobalamin , which is the standard option in the NHS anyway. You don't have to have cyanocobalamin injections it isn't the only option.
Even if your B12 levels appear to be back to normal , it's usually worth staying on the B12 injections three monthly for life if you were diagnosed with B12 deficiency anaemia not just for a PA diagnosis.
Low B12 , or functional B12 issues , can have a big impact on thyroid function and results . It seems to be a vicious circle which makes you wonder why they don't test both B12 and thyroid function at the same time when symptoms appear or get worse. B12 can trigger thyroid dysfunction and an autoimmune response of thyroid and other antibodies , and then thyroid Dysfunction can make it harder to transfer all l active vitamins and minerals from digestion to the blood stream and beyond.
Anxiety and Palpitations with no obvious cause are common neurological symptoms of B12 deficiency, and if they occur suddenly they are a warning sign to get your B12 level checked before the deficiency begins to cause heart and breathing issues. You are right , you don't want to get to the point of Anxiety symptoms again , especially if you can avoid sinking back into the deficiency problems again.
Just to clarify, I for one am not aware of any B12 product that is NOT synthetic. (Other than things like liver or meat extracts which have a certain B12 content.)
Cyano-, Hydroxo-, Methyl- and Adenolsyl-cobalamins are all, as I understand, manufactured via some form of microorganism/fermentation processes.
I’m sure they are all manufactured. It may be that different additives cause problems for some rather than type of cobalamin. Cyano gives me a cough but my mother had monthly cyano injections for 8 years without any issue.
Yes, they are all manufactured when made in to supplement form. The difference is more to do with the form that is produced and type of synthesis . Methylcobalamin is a simpler , more active compound which is easier to absorb. Cyanocobalamin contains a cyanide molecule which can both make it harder to absorb , makes the body work harder to eliminate the cyanide molecule component, and the cyano element of the product is the potential cause of side effects and intolerance for people , like myself , with hypersensitivity to chemicals in foods , skin products and medications.
Completely understand. When I use the term 'simple' I'm using it in relation to that type being easier to process in the body , rather than molecular structure.
Methylcobalamin in supplements or injections is the type closest to naturally occurring B12 we ingest in food. It is easier , therefore, for the body/ brain to recognise and process efficiently. Cyanocobalamin's additional cyanide molecule needs extra work by the liver , the cyanide molecule is processed first in order to eliminate the toxin. It causes extra work for the liver. It can also be the main side effect issue for those people with sensitivity to various chemicals or with poor liver function.
I assume this is the reason that Methylcobalamin is becoming the injection of choice in much of US complementary health care , and is the injection given in the NHS in hospital for more vulnerable patients with liver issues or on dialysis.
Cost , as ever , is the reason that Methylcobalamin supplements and injections are not the routine choice , and the reason supplement manufacturers choose Cyanocobalamin over Methylcobalamin in their products. Fine for the healthy individual whom just takes supplement as a healthy life choice and are able to absorb products easily , but not so helpful for those whom need the extra supplementation for health reasons and absorption issues.
I tried to switch over from methylcobalamin from cyanocobalamin when I was first diagnosed, no go. There are quite a few of us on the PAS forum that do not do well with methylcobalamin injections. I can actually feel it in my system in sprays as well, one I thought was complete hydroxocobalamin. I turned over the bottle on feeling off & voila.
I don't understand as I have that gene mutation, MTHFR homozygous, that people are always going on about how one needs the methyl form, but nope, nope and nope (obviously not said as exquisitely as radd - laughing -because that is impossible)
Only ever had hydroxo injections - just methyl sublingual (Jarrow). Apparently only methyl injections are used in Japan, hydroxo here and cyano in US/Canada.
Yes I am in Canada & therefore have cyanocobalamin. I tried both methylcobalamin and hydroxocobalamin privately. I just have the fewest side effects on cyanocobalamin. Although I did love the lasting effects of hydroxocobalamin.
Yes, it's definitely individual , as it is with all illnesses .
What can be a miracle for one is murder to another. It has a lot to do with your unique combination of conditions and genetics , but unfortunately most GPs and Consultants don't take these things into consideration, even for people like myself with a number of multi systemic health conditions. They still insist on trying to heal or treat one condition at a time without considering the effect of the others , or how one treatment could alter the efficiency of other treatments you are on .
And don't get me started on the amount of times I have heard , " you can't have that " or , " we don't do that " . In the past when I was more ignorant of the way the system works I'd take it as Truth. Now , I've usually researched the guidelines and actual treatments available before an appointment so that I'm forearmed to say , " Well , actually you can because ....". At least I get some enjoyment from watching their faces drop when they realise they've been caught in a lie or watching them checking the computer and having an epiphany. Its nearly worth all the hours I've spent having to research my illnesses to get stuff done.
Although a genetic code can not be changed, the purpose of supplementing methyl-version supps is to support gene expression & protein synthesis by improving up-regulation and avoiding buildup bottle necks, ie everything works in synch.
Almost every body biochemical reaction involves methylation, which is when methyl groups are added to molecules, ie, carbon metabolism in detoxification, immune function, neurotransmitter function, how we control inflammation, etc. Because all cycles are interconnected (ie, folate, methionine, urea cycle, transsulphuration pathway, etc) they are influential on each other.
I too am heterozygous genotype for MTHFR meaning (on the surface) risk of up to 40% reduction in gene function impacting supply of methyl-folate (5-MTHF) but it is not guaranteed without examining this variant in the context of the whole methylation cycle, ie the knowing of only one mutation isn’t a guarantee of impairment to that cycle, only increases the risk. To know more would be to have further tests carried out on methylation genetics.
Other negative influences would be poor diet, chemical/drug exposure, uncontrolled stress, inadequate thyroid hormones levels, and insufficient dietary cofactors such as the B vits, zinc & magnesium and amino acids such as methionine that turns into SAMe.
Great Reading is ‘Dirty Genes’ by Ben Lynch, and genetic testing of further methyl-groups allows better chance of correct supplementing/supporting of impairments.
Thank you for that useful information. Methyl suits me too and I used to take the Jarrow sublingual between injections which I found excellent. I hadn’t come across b12 and vit C conflict so will look into that. Unfortunately injections (hydroxo on nhs) have been stopped - it’s not a choice - as they are regarding levels as well within range. Previous diagnosis has been dismissed and they will not be restarted unless deficient which makes experimenting with supplements, which may raise raise blood serum but not treat an underlying condition, such a difficult decision. Time to read up more I think.
Have you checked if that is just a choice being made at your surgery or in your region.
As far as I know , when I researched it before they started my loading doses , Hydroxocobalamin and Cyanocobalamin injections were still the two options available on the NHS both in England and Wales. The Hydroxocobalamin was what they had prepared anyway as my first injection as my surgery said it was the more common first choice.
I have it in my notes that I am intolerant to Cyanocobalamin just so that the nurse knows not to just take the first ampoule at hand or to give it to me if the run out of hydroxo.
Even if they have chosen to change to Cyanocobalamin in your area you can still request the Hydroxocobalamin based on the side effect and intolerance , a cough would be a warning sign of intolerance causing potential breathing issues.
The NICE guidelines do point out that injections should carry on regardless of blood test levels , unless too high , as that is the point , your levels are back to normal because of the treatment and you shouldn't have to get to the point of having severe symptoms or a deficiency to prove you need the B12 treatment. It annoys me so much when I hear of this working ignorance on a surgery care level. They also specify that the treatment should continue and no more B12 blood tests are required unless new symptoms occur. Probably to prevent unnecessary costs and this habit of GPs terminating the treatment based on test results which only prove that you are responding to treatment not that you don't need it anymore.
I recently managed to get to the point of getting neuro symptoms again despite the supplements , letting my symptoms prove that I needed to be on the two monthly injections as stated in the guidelines , as without them seeing my condition they would not work outside their Surgery rules , but inside the real guidelines, and give two monthly injections.
It is so difficult juggling the choices in getting the right treatment because if the way the system works and the lack of knowledge there is about multisystem conditions. The point they always seem to forget is you can have more than one health issue happening at once , it isn't either /or, and that Nutrient and Metabolic deficiency disorder usually cause other conditions to get worse because the lack of nutrients can cause dysfunction.
Good Luck with your search for the right treatment , it can be a full time job!
I suffered your symptoms for over two years, despite being on thyroxine for Hashimotos disease the fatigue & brain fog were overwhelming. I went gluten free & the symptoms began to lift within a week. I've now been strictly gluten free for seven years, & the symptoms have not returned. Cooking gluten free is easy & there are now plenty of gluten free options at restaurants, so it might be worth you trying a gluten free diet for six months to see if you feel better. If you are sensitive to gluten You must be 100% gluten free, even a few crumbs of gluten can affect your system for a few weeks.
Thanks cat, yes, over the years I've tried gluten free but before the b12 injections which solved all my issues in a short space of time. It is a good thought at the moment though as it may reduce any overload on my digestion which is certainly not as good as it could be. Thank you.
Can PA resolve itself and is a negative antibody test a reliable diagnostic for such a resolution? Given that you have had b12 deficiency and PA the withdrawal of b12 injections is a risky medical strategy compared with their continuation. See
Thank you for replying. My understanding is that PA cannot resolve itself. Many doctors are adopting the stance antibodies are required for a diagnosis though it has been, and still is as far as I know, also widely accepted you can have PA and be antibody negative on the basis intrinsic factor antibodies are only seen in 50% of people with PA (this was the basis of my diagnosis). I have never had a positive antibody test and all have been post treatment.
The article you mention is very interesting. It's sad to see it's only dated 2019 and think it gives a true representation of where monitoring and treatment of b12 deficiency sits.
Latest active b12 is 89 which sits mid range though has dropped from 150 in 2020; serum was over 1500 in 2020 and 349 earlier this year.
I'd say those figures speak for themselves . They are declining despite your efforts since your injections stopped. You can't rule out B12 deficiency as a complication of your health issues even if they also discover thyroid issues , and in your case , the changes in thyroid antibodies could be directly related on your B12 levels starting to decline and beginning to effect thyroid function and other body functions in general.
This is especially possible if you had previously found all of your symptoms improved very quickly and you had no further problems arising while on injections.
B12 levels in the liver and blood stream can take up to two years to fall to a deficiency level but with the fall inevitably happening if you have a B12 issue with your symptoms increasing gradually as the figures drop. If it was only caused by low B12 in your previous diet , and you have changed to diet to compensate for that , the decline in figures you are seeing wouldnt be happening it would have balanced out at a higher level . The decline , even though still in normal range to that extent should prove to your GP that some form of absorption issue is happening.
It might be worth discussing this point with the GP and taking in some links to research about the link between thyroid dysfunction , ( when not linked to a specific or autoimmune thyroid condition), antibody changes if various types , Chronic Fatigue , and Vitamin B12 deficiency.
It would be better for them to take a positive treatment approach , resuming your B12 injection then testing your thyroid panel again rather than doing it the other way around. It could make a difference to an accurate thyroid diagnosis or the type and level of thyroid treatment you need. If all your symptoms improve , it proves the fact that it is better to continue the injection , thyroid issue or not.
If they aren't happy to do it , get a second opinion and ask for a referral to gastroenterology.
Your comments are in tune with my own thoughts. The thyroid antibodies are what is highlighting the fact it may still be b12, not only because I have had thyroid issues in the past which disappeared, but because prior to my diagnosis for b12 deficiency I also had a Coeliac antibody which promptly disappeared with b12 injections. I do fear other things are starting to be affected which is why I am feeling so unwell. I very much want to avoid another relapse but I am now unable to approach my gp as it has been made explicit clear they would not be doing their job to ignore my current b12 levels. I also can't ignore the fact my mother had an overactive thyroid and non-alcoholic sclerosis of the liver as I think it puts my risk of autoimmune conditions in the pretty high category. Thank you for your valuable comments - it's very much appreciated.
Did you get a positive PA antibody test & then someone tested again? Which makes no sense as you stated and know negative on the test does not denote that you do not have PA. But a positive does, did you get that to have the original diagnosis?
I am concerned for your health. I know you're educated in b12 deficiency, I understand that.
But there should not be constant testing of your levels. Nor does it really matter if you have PA. You have an absorption issue nonetheless, as I assume diet-related has been crossed off. So until that absorption issue is found and unlike PA found to be something fixable - injections continue.
Never had a positive PA antibody test...other antibodies, thyroid and one for coeliac which prompted further investigation but no coeliac evident, just b12 deficiency. Of course they don't check for thyroid antibodies so they are unaware of these latest results but I know they aren't right and I don't feel well. I stressed my levels should not be rechecked re NICE recommendations but was told, very strongly, a positive antibody result is required. I'm not the only one of course but I'm not comfortable self injecting - nothing against those who do I must add. Interesting I thought thyroid may be the problem due to the antibody results but now leaning towards b12 being my big issue. Thank you.
I am so sorry. My sister is in the exact same situation. They will only give injections to those with PA, although they truly don't know if some have PA because they are only tested once. And disregard the positive health outcomes in front of them. I give her injections due to this change and completely stopping injections during the hard part of Covid at her office (I self-inject and my doctor's office never stopped during Covid) & her doctor thought the world was exploding. Laughing.
But of course they are fine with making people ill, wasting money on testing on things that are really b12 deficiency & quite possibly causing irreversible damage.
I know it is none of my business, but why no self-injecting for you?
I want to find a definitive answer to my health problems and would rather not mask/skew results. A big ask I know, especially as I have spent most of my adult life trying!
Okay, I am an optimistic person but that is a big dream when they don't even follow their own medical information in front of them.
My thyroidectomy was because of a blockage & out came a diseased thyroid despite numbers very much like yours a la everything is absolutely fine.
Remember that people do get definitive answers a la You have MS, I am sorry it is dementia, you have trigeminal neuralgia when some simply have PA or b12 deficiency. All of those people would think they had the definitive diagnosis. How would they know any better?
I don't mean to pick at you but the lack of knowledge known about both your possible issues is insane in the professional world. So I worry about that stance.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thyroid Peroxidase antibodies
Thyroid antibodies 
positive thyroid peroxidase antibodies
Thyroid antibodies and vitamins and minerals
Thyroid Peroxidase Antibodies 
