Just waiting for gp's blood test results to see what they suggest about treating my low b12 and folate. My medicheck blood tests showed i had very low B12 and Folate. Gp insisted i had more blood tests, they dont seem to take notice of private blood tests.
Im eagar to start taking the super complex B vitamins that i purchased but have delayed taking them so the gp gets a clear picture why im so low.
He ordered a full blood count, tsh, t3 and t4, cholesterol. Medicheck blood test showed my T3 was low and T4 high.
Do i need to take separate B12 and separate Folate supplements or is there enough of both in super b complex, these are the dosages:
Ive been taking Mercury Pharma for 9 days and feel horrible, i stopped taking Accord before that because of awful side affects (before that i had been taking Actavis which i was ok on, i have been assured that nothing has changed but i disagree i felt so ill) . My eyes are blurry again since taking MP but not as bad as when i took Accord. I feel anxious, muzzy head, brain fog, achey joints, fatigue, im going to persevere as i dont want to keep changing brands, will it settle down or should i try another brand i just dont know anymore im so exhausted trying to do the right thing.
I was taking Wockehart 12.5mg, splitting a 25mg in half together with 50mg Actavis, out of desparation after not taking Accord i took 2 x 25mg and 12.5mg Wockehart and was ok, the pharmacist once said after trying to palm me off with some other brand that the ingredients were far superior then Wockehart which made me wonder if the ingredients were good enough, thats why i decided to try MP.
Is anyone else out there on Wockehart only?
Should i give MP longer?
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Odinil
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You really do need testing for B12 deficiency as that is 41.5 in a range of 37.5-188 and as mentioned before anything below 70 suggests testing for B12 deficiency. You should have that done before taking folic acid/folate/B Complex because that will mask signs of B12deficiency.
Did you check the list of signs/symptoms of B12 deficiency that I linked you to in reply to your previous post about this result?
Folate Serum 4.49 ug/L > 3.89 (R)
The 400mcg methyfolate should be enough to help raise your level but, as mentioned, you shouldn't start taking any B Complex before further testing of B12.
No i havent taken anything yet because i wanted my gp to see what medicheck could see. I should get the results tomorrow or early next week. I asked for a PA blood test but my gp said his lab and another local lab wouldnt cover it, so does that mean i have to pay for it, i checked the price with medicheck and its very expensive, my gp after seeing medicheck results didnt think my B12 wasnt too low being still in normal range totally ignoring the fact it was the low end of normal. If they suggest i just take a B12 supplement what can i do, im exhausted trying to fight the system. If i do as they ask do i ask for another blood test after a certain period to see if it has increased levels? If it does increase do i still need to have a PA blood test?
I did look up B12 deficiency systems and yes i do have some systems
I cant think straight
Memory loss
Started to feel very low/depressed
Fatigue
Muscle aches
No energy
Blurred eyes
Shortness of breath
Anxious
Irritable
Light headed
Very aware of my breathing pattern all the time, makes me anxious
Feels like the front of my neck where i had my thyriod removed feels sore, like a sore throat but lower
Also medicheck suggested maybe having a serum methylmalonic acid blood test.
I asked for a PA blood test but my gp said his lab and another local lab wouldnt cover it
Have you asked why the labs wont do this test, it's not exactly a rare test. Did your GP try and find somewhere else to do the test.
Also medicheck suggested maybe having a serum methylmalonic acid blood test.
This is the test you need to test for B12 deficiency.
I did look up B12 deficiency systems and yes i do have some systems
Did you give this list of symptoms to your GP and discuss them? Doctors are supposed to go by symptoms, not numbers, where B12 deficiency is concerned.
Did you give your GP the information from Viapath which I linked to which had a link for you to print it out, suggesting testing for B12 deficiency when Active B12 is below range.?
If they suggest i just take a B12 supplement what can i do, im exhausted trying to fight the system. If i do as they ask do i ask for another blood test after a certain period to see if it has increased levels?
If your level has increased whilst supplementing, testing B12 whilst supplementing reflects the fact that you are supplementing.
To find out if you are holding on to B12 you have to be off the supplement for 4-5 months.
Im confused i think it was the serum methylmalonic acid blood test that the doctor was referring to because when i mentioned it to him he said oh yes we can do that on the nhs, he phoned me back that day saying that his lab wont cover it and that he would try the local hospital lab, next day the receptionist rang me to say that the gp said he couldnt get it covered at the other lab. As it was the receptionist i was unable to find out why not. I did ask her but she said she was just passing on a message.
As i never know what doctor i am speaking to, its a different one everytime, i cant build a doctor/patient relationship.
Hopefully i will get my results tomorrow and i will quote that even if im in range, be it low range, it doesnt show whats inactive b12 and what is active b12, i will quote my symptoms once again as it will be another doctor i havent spoken to.
If i dont get anywhere regarding the serum methylmalonic acid blood test i will send an email why i think its wrong to be denied the test and attach some of the links about b12 deficiency.
Its so difficult to get your point over on the phone, i never feel im being listened to and i feel rushed not being allowed to explain anything.
So serum methylmalonic acid blood test is best to diagnose b12 deficiency than PA blood test?
No i didnt discuss with gp regarding Viapath i barely had time to tell him all my smyptoms.
I havent got a printer to print it off.
I purposely havent started any b12 or folate supplements so that gp can see exactly what medicheck results showed.
If i get the chance to speak to the gp and not just the receptionist i will quote what i have learnt so far but my experience is that they dont want to be told so close you down. Years ago you knew your doctor, he knew your medical history before you walked into the room now it takes nearly all your 5 minute slot to update them leaving no time to discuss the reason you are there.
So if i start on super b complex and b12 supplements how long do i take them before i get a blood test done to see if my levels have gone up, do i stay on them or come off them like you said for 4/5 months to see if i can hold onto b12.
I would wait about 3-4 months to retest after starting supplements to see how your levels have changed.
You would need to get your B12 right up before coming off supplements to see what you're holding on to.
If you have Pernicious Anaemia then B12 injections will be for life and further testing isn't needed nor should be done because after an injection your level will be raised considerably and before an injection is due your level will probably be quite low.
Sorry if i keep repeating myself and you have already answered this question before but what blood test do i have first serum methylmalonic acid blood test or a PA blood test or both and when?
One more question, im a poor convertor my T3 low end of range and T4 high outer of range, does that mean i should reduce my levo, i am on 62.5mg because anything higher and i get palpatations, shakes, water retention generally unwell, i seem to be very sensitive to levo i just wondered i may be someone who doesnt need a high dose even though my thyroid has been removed.
Am i right in thinking that i should see if the vitamins help my T3 level before i push for having some T3 prescribed and reduce my levo slightly as medicheck suggested.
My understanding is that you need vitamin D, B12, folate and ferritin good in range for your T3 to be converting from T4. So hopefully if you get your B12 and folate in a better place the conversion will improve. Currently working on the same with my mum and just like you we couldn’t get the doctor to do PA testing and despite writing a letter listing all the reasons he should do it ie symptoms, drugs my mum takes that can lead to low b12 etc got nowhere and we decided to self supplement and see whether that would help. Fully understand where you’re coming from - it’s such a struggle. Anyway our plan is if it’s improving from tablet supplements then that’s good. Our issue will be if it hasn’t. We can then go back to the doctor and push again. Good luck with yours
Thank you. Im trying my best to educate myself but it can be abit overwhelming especially when you are up against the medical profession.
Ive struggled for the past six years since having my thyroid removed, i never knew about T3 until i joined this website, at my hospital appointments it was never mentioned, i now know why. I didnt think i would have a hard time with getting my B12 sorted. The gp has all my medicheck results that suggested i have a serum methylmalonic acid blood test.
This can be done on the nhs but i was refused. Gp said my B12 is still in range even though its at the lowest end, called it normal, now ive learnt that theres inactive b12 and active b12 so my result could be made up of inactive b12 which is doing nothing for me. Its like a conspiracy, the less you know the better they like it. Oh well i will soldier on but its not easy when you have other things going on in your life when you dont feel good.
I hope you get your mum sorted, its great she has your support.
Can fully sympathise with everything you’ve said. I also suspect as women we are more poorly treated which is awful in the year 2020. I shall be writing to the health secretary when I get around to it, not that it’ll do any good... good luck yourself!!
Have you read what I linked to? The different tests are explained in there.
I'm not an expert in B12 deficiency.
Pernicious anaemia is one cause of B12 deficiency. Pernicious anaemia is an auto immune condition that affects the stomach and affects absorption of B12. So first of all you need to be tested for B12 deficiency and MMA test is supposed to be a good indicator of that, but clinical symptoms must be taken into account and you have been given links to signs/symptoms of B12 deficiency. Homocysteine is another test for B12 deficiency. Both MMA and Homocysteine would be raised when B12 deficiency is present from what I understand, but you have to remember that these tests are not foolproof.
If B12 deficiency is indicated then the tests to see if it caused by Pernicious Anaemia are Intrinsic Factor antibodies and Parietal Cell antibodies.
All this is explained in the link I gave you yesterday.
We Hypos need optimal nutrient levels for thyroid hormone to work properly, and before considering the addition of T3. Optimal levels are:
Vit D - 100-150nmol/L
B12 - Top of range (900-1000pg/ml) for Total B12 test, minimum 70 (better 100+) for Active B12 test
Morning, I have a question related to part of your reply. If pernicious anemia causes low B12 due to lack of absorption through the stomach will Better You’s spray B complex work? Like the D you spray it on the inside of your cheek. It’s got folic a I’d rather than folate so not the best complex. Anyway, was just wondering.
As it is absorbed through the mucous membranes in the oral cavity it bypasses the stomach so it should work. I can't vouch for it as I have never used it but many members use it.
Beads Edited to add - are you asking this because you have Pernicious Anaemia? If so you should be on B12 injections. I don't know if a person who is diagnosed with PA can get what they need from any form of oral supplement. My answer was about absorption generally, not for someone who specifically has PA.
It’s got folic a I’d rather than folate so not the best complex
No, it has methylfolate, mentioned in the ingredient list
Folic acid (Vitamin B9) (as methylfolate, as Quatrefolic®)
No, I don’t have PA, I have a friend that has the jabs, but she really notices it when it’s wearing off and she’s still a few weeks away from the next one. I was wondering if the spray would help tide her over between them.
I should take notice of what the tablet actually translates my typing as, the “folic a I’d rather” (sorry, I don’t know how to do the bold bit) should have read “folic ACID rather”. 😁
I know some people with PA in the same situation - definitely notice deterioration before the next jab is due. Some people have managed to get their jabs at more frequent intervals but some take sublingual B12 until they have their next jab.
When I gone strictly diet, first gluten free after 6mths some of symtoms gone..
Then eggs and dairh free and feeling much better in the summer with sunbathing regularly.. I improved a lots just last summer I even stop taking Vitamin D also reduced my levo quite lots..
But since the suns gone and some issues come back then Im awared that Vitamin D is really important for me..
Adding double dose Vit D now compared before also has to raise levo gradually due to cold is on its ways that im bad with
Take some of those experiences.. it works for me and hope it helps
Thank you ive taken your advice on board. Thats interesting what you said about vitamin D, my vitamin D is good but i did notice with less sun now, a difference as in aches, mood and energy levels so ive just purchased some vitamin D spray. Just come off the phone with my gp and my head is spinning, we were discussing my blood test results and why is it you have all your questions ready and as soon as they start talking especially over you, i come off the phone more confused.
I couldn't handle a super B complex. I take three supplements. One that has B12(500mcg) and folate(1330 mcg) with intrinsic factor, another with a small handful of minerals like zinc and selenium, but I only take 1-2 of those daily, the last one is a B5B6 and I take half a pill. That brought my B12 up to 750 from 393 and folate to 17. I've had low T3 for the past four years. I didn't realize until I gathered my past blood tests and compared.
It's interesting that you have had side effects from Accord, I have been in touch with them and it's the same pill as activas, just a name change. I believe your symptoms must be something else.
Just a quick reply regarding your Levo. I take Wockhardt brand Levo as it has fewer fillers than the other brands. I had terrible side effects from both Actavis (Northstar) and Mercury Pharma. Don’t be put off by what a Pharmacist says, you have to find a brand that suits you not them.
Thank you thats good to hear, i didnt know if it would have the same effect on me (symptoms) because i was splitting a 25mg in half together with my 50mg Actavis can you see a problem if i take 2 x 25 and 1.25mg? I did do it for about a week as i didnt want to take Accord and deciding what other brand to have. Is that good to have less fillers?
I think the fewer fillers, the less the problems!! I am currently taking 100 mcg (4 Wockhardt tablets) They are so small that I throw them all in my mouth at once and swallow 😊
I think ive decided thats what i am going to do, i cant take feeling like this anymore, my blurry eyes, puffy face, not feeling with it, peoples names normally i would know without even having to think, muscle weakness. Thank you. I didnt think there were many people on Wockehart, you are only the second person i know that takes it.
I take Wockhardt after trying many other brands and I have found they are the best ones for me. I also have a B12 injections after a blood test found I was in range but at the low end. My consultant suggested my doctor made these available and they have made an amazing difference. Tablets and sprays do not seem to work for me.
Thank you i am so relieved to hear that. My gp wont hear it that i may need b12 injections, he just keeps saying you are in normal range i say yes but right at the end of normal, im not being listened to, did you have a hard time getting your gp to prescribe them. Im at my wits end.
Im got tablets to start but i cant decide whether to have a blood test by Medicheck first to test my b12 deficiency and to see why its deficient.
Im low end but i was closed down when i mentioned B12 injections to the gp also told only an endo can prescribe. Im trying a super B complex and have just purchased B12 spray. I wanted to see if it makes any difference, i'll have another blood test just before my appointment with endo in December, doubt if they will agree to injections ive got to convince them that i am a poor converter thats going to be hard enough, both will probably be dismissed as 'normal'.
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