Has anyone tried Neovos for an MMA urine test please?

[Jo5454]

Hi...wondering if anyone has tried these for tests please? I've used St Thomas hosp in past but they stopped over covid and am awaiting to hear back from them about current testing. Meanwhile these came up as offering a b12 urine test for £63,which is for MMA considerably cheaper than others available ?Many thanks...

[Dancer57]

Hi

I have never heard of Neovos I must admit but interesting to read your post. I approached St.Thomas's a few months back and they said they were not doing private tests anymore and didn't suggest anything else.

I just checked out the Neovos site and the price is indeed a lot cheaper than the one I did last year so worth noting.

I actually had a serum MMA test done today on the NHS, however, I won't hold my breath as to whether it gets done by the LAB. This is the second test in two weeks. The first one included an Active B12 and a serum MMA. Mysteriously the Active B12 draw has gone missing and the MMA was too old, 1 day.

Hope someone comes back as having used Neovos.

[Jo5454 in reply to Dancer57]

Thanks for your reply. I’m waiting to hear back from the consultant who was in that department as he mentioned some home testing that was being set up,will put it in here when I hear…

I contacted Neovosvthen they brought to my attention it was there that I’d done an omega test, though via another firm. Not been too well lately, thus hadn’t registered that’s where the omega one had been tested. That was all done very well, so I but the billet and ordered one this afternoon! So I will indeed report back.

Oh dear that all sounds a disappointing waste of your time! Are you waiting to start treatment, so it’s holding you up?

Yes I’m concerned about the time in it arriving, know I had to do the St Thomasvlate in the day, so in transit as little as poss, so providing this isn’t fasting guess I could do the same again and up the postage to next day if need be? I should’ve done this before loading dose like first time around, but was told Actove b12 was going to be tested by NHS, then assumed MMA would follow if need be. Not the case, my serum was too high for that. Thought I’d test and see how it is after loading dose anyway, if it shows higher could help with getting more frequent inj!

Fingers crossed yours gets to its destination this time!

[Dancer57 in reply to Jo5454]

Sorry to hear you not been well. All this fussing around with tests doesn't help. If only it was more straightforward!!!!

Not sure having injected with B12 how that will affect the tests. My knowledge on that is very limited.

My total serum B12 via NHS was well within range last Oct. I tested privately Active B12 in the September and it was 28.6 borderline low. I tested MMA urine privately and that was high. I left it as the GP said B12 ok and they don't do MMA tests.

Under new B12 guidelines I took this and another query on bloods to a new dr surgery. Alas, same thing total B12 is ok, no problem.

I am not supplementing or injecting. It seems from previous results I may have an absorbing issue but I want the NHS to take ownership of it!

Anyway, I do hope you get on ok with the testing. It will be interesting to know how you get on.

Good luck.

[Jo5454 in reply to Dancer57]

Thank you...Well I'd consider your Active b12 to be very low so I'm sorry yve not had right support from your GPs! St Thomas were referring any Active b12 results between 25-70 for MMA so they must think so too!Like you, had a job to convince symptoms were b12 related first time around. My serum level was 500 when I learnt abt b12 & id had ME for many yrs by then. After treating low ferritin, B12 lowered further & quickly to 262 & after months! Active b12 27, mma over 700 so called a Functional def & advised inj every other day until improvement. Of course,could only get the 6 loading dose, but then monthly, so grabbed that!

It changed through covid , plus my health had deteriorated so l had a spell of being concerned I was overdosing & had sublinguals instead.

Know differently now & seems blood results at that time were indicating not enough b12, rather than too much,prob due to a sickness bug I'd had.

Health has deteriorated badly since,which I've partly blamed on other problems,but after coming to a halt,quite severe neuro symptoms luckily been given loading doses.

have higher mch to.indicate b12 defic,but because serum higher due to sublinguals, can only have 3mnthly now which I'm now in debates with due to the neuro symptoms!!

Unfortunately the Active b12 didn't get tested as said, I'd have done one myself had I known, so no evidence there to help. Thought I'd do an mma myself out of desperation/interest just to check if that's OK this time around,but realise mma usially lowers quickly after injections.

Anyway,at the end of day it's the symptoms and how folk are feeling should count isnt it,not these numbers. If we are feeling better on injections and symptoms abate the proof is on the pudding!

So yes I totally understand the feeling of wanting them to recognise this. How are you feeling symptom wise?

If it were me, I'd print out the Nice guidelines and copies of yr results, and put in a letter outlining symptoms & give to your Dr. If no result maybe send to a higher body. A family member recently gave the name of the local one for us, She had a Dr's decision overuled & allowed treatment (not b12) as they apparently take into account how your condition is affecting your life. Really hope you soon get somewhere with it all & will report back on here about test. It's being delivered today,so that's good service at least! Bank hols now,so will aim to complete next wk hopefully...take care

[Dancer57 in reply to Jo5454]

Sorry you appear to have had the run around with all this. However, from reading other peoples posts it is not unusual but not good enough.

Others may have different experiences but since I became ill end 2022 it has become obvious to me that some Doctors only treat a reference range and not the person and their symptoms. In other words if your result is in range there can't be anything wrong what is your problem!!

My new surgery did have a copy of the new Guidelines on screen but didn't pay much attention to it. I took my private test results and he didn't look at them. I get fatigued, it doesn't take much to feel like I have run a marathon and I have done nothing much!!!

Since I was unwell with a Hashi flare in 2022 I also now have tinnitus in my ears, which is annoying at times. So I don't have anything like the symptoms you and others have.

I await to see if my MMA gets tested, think it takes about 2 weeks. My Active B12 blood sample has mysteriously disappeared.

Anyway, I hope you get the result of your private MMA test quickly and get the treatment you need to help you feel better.

Take care.

[Jo5454 in reply to Dancer57]

Thank you...its horrible feeling that way and trying to find gusto to sort it out, can relate to the marathon and that's just before breakfast! Noisy ears can't be helping,thinking wise either. Just a thought,are your ferritin levels ok,my ears often get noisy when thats lower?Really hope you soon get a result, though if you have a private test and an Active b12 that low from last year you have evidence that has already been wrongly disregarded...take care

[Dancer57 in reply to Jo5454]

Hi, My Ferritin levels were near mid range last October, no idea what they are at the moment. I am fed up keep testing one thing or another to be honest. It becomes a full time job!!!

I will see in next 2 weeks if my MMA got tested or not!!

Hope your test goes well and your health issues get sorted soon!!

[Bertiepuss]

Interesting! I have used their omega 3 test, pleased with that. Hope you get on ok with the urine MMA test, I will await your feedback 😊 Not sure how long you would need to abstain from any B12 supplementation or injections, 4 months? Although I've never understood this 4 months thing...Maybe one wants to measure if MMA is kept low from B12 supplementation in whatever form to show it is working and there is not a functional deficiency??? At the end of the day, no test is 100% accurate. At least this one is a lot cheaper.

[Jo5454 in reply to Bertiepuss]

Thank you...its actually £70,yes far more reasonable...Yep that's what I thought. It's a bit like shutting the stable door after horse has bolted in my case for being helpful in diagnosis. But as you say, can determine mma isn't raised since loading dose, but worth a check just in case! I don't completely understand the functional element. It was deem that due to having enough serum wise but the mma built up. Or us it a case of the NHS range just not suiting all.individuals and way off kilter? I don't know. Mma lowered on further testing last time, on monthly jabs, but still symptom wise felt I wasn't completely right,so its all a but of a minefield really & should be gonwith what you feel I guess! Yes I was pleased with their omega test too,well aside from being bit confused at an 18;1 ratio when I eat a lot of good omega 3s. All interesting to work at! Will get back on here...

[Bertiepuss in reply to Jo5454]

Same here, I've already been self-injecting so hard to say if this test is worth it now other than if it comes back high then it will point to a problem. If it comes back low then I don't think that proves everything is fine though. The mind boggles!

My omega 3 came back just into the 'good' range on all the values measured. But, I take a high dose of algae omega 3 and avoid seed oils that have more 6 and 9. I don't eat fish so don't get any omega 3 from my diet, only ALA from linseeds which has to convert. I did a test a few years ago, I was on a lower dose of the same algae omega 3 and then my results were just into the 'not so good' range so my increased supplementation has worked. I take this at double the recommended daily dose - Vegetology vegetology.com/the-vegetolo.... I am not advising anyone take double the dose, dosage very much depends on if you get omega 3 elsewhere in the diet and how well you absorb. This dose seems to work for me personally as a vegan.

[Jo5454 in reply to Bertiepuss]

Yes, the mind definitely boggles! It's a deficiency with so many possibilities of why it happens, as u say MMA can be useful if it shows up,but on other hand can still be a prob if doesn't. All ifs and buts as to whether these various tests strike lucky but at end of day, the symptoms are still there,regardless of how it's happening.That's all interesting thank you. Yes,think yre right about the rapeseed oil. I've swopped to more of that,what with olive oil prices going through the roof,but think its poss what's causing my imbalance now as I've been slugging a fair bit of it to add calories! Should've listened to the old adage,everything in moderation!

Although ive been taking fish oil supplements for few wks, I may now try to correct it with amnending this oil business first,or I'll never know whats what! Don't mind if I need supplements,but already need a few with all this,so prob time for yet another exoeriment! I eat oily fish twice wk, & regular plant based omegas,but will see!Thank you for yr help,glad you've nailed yours,always such a relief when a plan comes together!

[Bertiepuss in reply to Jo5454]

I'll be honest and say, even if I wasn't vegan, I would still take algae based omega 3 supplements rather than fish based ones as I'm dubious about the levels of pollution in them. At least with the algae it is grown away from our polluted seas!

Well, I've nailed the omega 3, can't say I've nailed anything else though and still suffer poor health...work in progress. Yes, I would try removing the rapeseed oil first, and beware of seed oils in processed foods too. Good luck!

[Jo5454 in reply to Bertiepuss]

Yes I'm dubious about pollution too. I researched as much as I could and got a triglyceride form with what sounds like thorough,can't think of the word, cleansing will have to.do! But a good point about the algae,will bear in mind if my stepping away from the rapeseed oil a bit,doesn't work! I don't gave the option of much in way of processed food,having a latex allergy & warned of latex in glued/seals & potential gloves/rubber used in machinery, so most cooking/baking done from scratch.Yes, you can tick that one and at least could help with inflammation levels & maybe help keep.our brains in focus to try to sort the rest of it out! It's nice to have something that we can get to bottom of. All the rest seems to be somewhat more tricky! Good luck to you too & will let u know if I get better result than 18:1 next time!