I'm still a bit in shock as twice in the last week I've spoken to the same GP who was insisting my bloods were normal and not wanting to look further.
I've just had a face to face at his request (because of all the symptoms and background I detailed in my letter) and he has agreed for me to go up to 100mcg Levothyroxine😀.This is massive as I've been stuck on 75 for over a decade.
We had a discussion inc. the NICE draft guidelines regarding B12, which my husband hand delivered to the surgery last night, with another letter from me about how I am.
He had had a meeting by chance this morning with the Health Board and had enquired but been told that MMA testing was not done. He evidently tried to find out more so that is a good sign for the future.
Despite saying my Active B12 60.4 was not low, he mentioned B12 once a month shots to see if that helps my symptoms. So did go by my symptoms!
I asked him what he thought best to try first, and he said thyroid.
We agreed after some discussion that I will not take any extra B12 or Folate for 8 weeks and then retest (he was even happy to have Medichecks tests) as he would like to see how I do on levo increase alone, to see if my folate/B12 rise with just the levo. He left it up to me to decide.
I know generally on the forum the suggestion is to supplement to keep these two up (plus ferritin and D) but I would like to know how I do, so going with that until the next test.
Thank you jade_s for your myriad replies and Nackapan who put me on the right route at the start and everyone who replied to me and shared your experiences and made suggestions to me so far.
THANK YOU.
I honestly did not expect such an outcome. I do believe writing it all out respectfully and making sure he had everything prior to the appointent made all the difference.
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Sneedle
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😄🤩👏👏 woohoo! (I can't find back the party-man emoji!!)
Great to hear about a GP willing to work with you and well done for your persistence!
Hopefully the Levo increase will help symptoms, and the 8 weeks will give a good idea regarding what's happening with b12/folate. If it's malabsorption, you should see it drop. You're quite right about keeping b12/folate up for thyroid, but it is what it is. It's good to change only 1 thing at a time anyway.
Good luck and don't forget to keep a symptoms log! Keep us posted.
Party-man I haven't seen him but am imagining a Travolta strut😀
Thank you, I've been like a dog with a bone and have knackered myself but I don't care.
Yes it will be really interesting to see what B12 and folate both do. Come on body!
Good point about the symptoms log, I will do one and will report back. And no doubt I'll be back with more questions on behalf of my daughter. Thanks again for all your help.
The symptoms log I used was an excel sheet with symptoms along the top (columns) and dates along the rows. I'd print out 1 per month and then for each symptoms rate it on a scale of 0-10. May be too detailed/obsessive for you but just throwing some ideas out there.
a Travolta strut like this? 🕺💃
Found party man from another post but he seems to have disappeared from my drop-down list 🥳🥳
Thanks for your excel log. I find rating myself very difficult but I like the obsessive approach...I think I like keeping a journal type description as it allows me to wallow.
Very good news -and really glad that Gp seems to be following NICE guidelines already !
I have already expressedmy concern over whether NICE guidelines will be followed re MMA tests - due as much to availability as cost. Many local laboratories do not have the facilities to provide this test. Good that your GP is exploring this avenue.
You have done really well at a difficult time. I'm sure that your GP can see that too.
Thank you Cherylclaire for your nice words. It's heartening to be receiving all these good wishes.
Yes I can see what you're saying about the avilability of MMA. When I get the chance I'll try to remember to ask the GP about his thinking - I think I remember him saying that I could do an MMA test privately if I wanted and he would accept that, no problem, but would it change his proposed treatment if it came back normal (or low?). I would still have my symptoms. So I guess at that point he had already decided to pursue.
But for people whose gp (or the one they happen to be in front of that day) has not decided a course of action, will access to an MMA help? I'm still confused to be honest about the pathway, despite having looked at diagrams many times.
What if an MMA test could save the NHS time and money spent on onward referrals to various specialties? Is that its potential benefit to the NHS?
Yes - I think if a GP suspects B12 deficiency but isn't getting the expected serum B12 blood test result to make that final decision, an MMA test result being high would be the deciding factor.
You can see how this might prevent the need for the haematologist/ gastroenterologist/ neurologist route that might lead, years on, to either nothing being decided or a misdiagnosis. Followed by further years of failing to improve and deterioration.
A cost to the NHS, yes, but a massively bigger cost to the patient. Job loss for one - which affects not only income, pension, self-esteem but also the market loses experienced, valuable members of the workforce. And that's just one example.
The methylmalonic acid (MMA) should, in healthy people, link with B12 in their bloodstream and then continue to cell/tissue level. In people with B12 deficiency, the MMA will rapidly build up in bloodstream, having nowhere to go without forming that link due to the absence of B12. Injected B12 introduced to the bloodstream should as quickly clear this "backlog", so by the time the patient has had the 6 loading injections, MMA would ordinarily have returned to normal range - and there would be no point in carrying out the test.
That is unless there is a functional B12 deficiency, where the introduced B12 builds up uselessly in the bloodstream (so will appear "high") alongside the MMA build-up which, unless tested for, will remain undetected. The link is not made, and MMA will continue to rise alongside injected B12 - not reaching those cells or tissues. The best way of knowing that this is what is happening is to listen to the patient, who will find that symptoms worsen and overall health deteriorates, despite the B12 injections administered.
Thankfully, this is a rare condition. The normal range for MMA seems unclear also: being usually 0-280 nmol/L, but can be higher in some labs or in other countries. With an untreated B12 deficiency, it can rapidly become very much higher.
The only other causes of raised MMA that I'm aware of are renal problems which can be eliminated by a blood test, and SIBO (small intestine bacterial overgrowth) - which needs a fasting breath test series traking about 3-4 hours.
A SIBO diagnosis means that B12 and other vitamins will be being robbed by the bacteria, and although this may be seen as a treatable cause, treatment is not always straightforward. Antibiotics can be successful, but some antibiotics can deplete B12 anyway, and the bacteria can become immune over time to antibiotics - meaning that the type of antibiotic used may need to be altered. Not always an easy or complete recovery, then.
This is all I know of MMA testing - I had a very perceptive GP who, on seeing how unresponsive I was to the usual NHS B12 regime, got an MMA test done -and was able to give me a confirmed functional B12 deficiency diagnosis fairly early on because of this. Despite this giving me a far more frequent B12 treatment, it still took three years and six tests for my MMA to drop within range.
So you can see why I would be pleased to see this test being more widely used early on at primary care level. So much more useful a tool prior to B12 injections, but would not ever want to see B12 injections delayed because of lack of available local testing facilities.
I don't think you need a secondary confirmation by MMA test - if you can maintain continuity with your current GP. Someone willing to work with you through this.
Hello, of course, I do not know your complete story, but before I say anything else, let me say that if you are stating your B12 levels are 60.4, I don't understand how you are either alive or able to have a clear enough mind to write on this forum. You're saying your GP does not think your B12 of 60.4 is not too low? Really? The fact is 200 is too low 300 and 400 is too low and considered deficient. To me 60.4 is unimaginable. To me, that's like someone who's been lost out in a desert for a week and they are given 1 single drop of water and expected to recover. I don't say all this to belittle or scare you and I'm not trying to be sarcastic or anything like that, but I'm thinking right now that surely you didn't mean to write that your B12 level is 60.4, did you mean 604? Ok, so here's the thing. You are on Levothyroxine for Goiter or Thyroid issues.
Again, I don't know your personal thyroid history, but I was also told my thyroid was an issue and placed on medicine for a while and went to a number of doctors for a few years, but when one particular Dr. (who wrote a book about thyroid disorders) prescribed iodine for me and I begin to take it and then proceeded to become very sick, I looked up the iodine med he put me on and saw that it is very dangerous and can lead to death, so I stopped that med and begin to feel better. The reason I got into the whole iodine or thyroid issue, to begin with, was because they found a lump in my throat. Turns out the lump was only a sac of fluid (normal) and only needed to be monitored from time to time.
Naturally, your thyroid situation may be completely different, but back to the B12 issue. I don't know your age, but I am 70 years old and my wife and I have both been suffering from B12 issues for over a year now and probably for much longer. Doctors know barely anything at all about B12 deficiency. I recently went to a specialist, a hematologist, who ordered an IFA (Intrinsic Factor Analysis), for me and stated that he would be shocked if it came back as positive (positive meaning I have anemia). Well, the test came back positive, so I have a follow-up appt. with him in a few weeks, so I guess he'll be shocked. The thing is, he is a doctor, and therefore does not want to admit he's wrong. So, his specialty deals with cancer patients and anemic patients, but he stated that since all my labs look perfectly normal there is o way I am anemic. Plus he does not believe I am B12 deficient because my lab levels are all within the normal range.
However, the lab ranges are out of date and should be changed, but of course, they are not. So anyway, for a person of my age, my lab levels should always be over 1,000. Remember, when they do lab tests for your blood they are testing how much B12 is actively traveling through your blood, but how much is in your reserve bank (in your liver where your B12 reserves are kept. I don't know if I am talking over you or telling you stuff that you already know, so I apologize if I am off base with anything I am saying. I just could not believe your B12 was 60.4 and your doctor said it was not low. 60.4 is amazingly deficient and not to alarm you, but if that is true, please be alarmed. Ok, already written too much, but I sure hope you are going to be fine, but I am praying for you. Good luck.
Hello and thank you for your message - no worries and no offence taken. I'm not feeling great but wanted to reply - 60.4 relates to my Medichecks Active B12 blood test (range 37.5-188). Serum B12 (inc active and inactive) is the usual NHS blood test and has a different range eg. 180-900. So my level for the test I had, the Active B12 test, is lower end but not out of range.
If I had 60.4 on a Serum B12 test I would be be very ill indeed. Thank you for caring and replying to alert me☺️
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