Results are back (Update 24 Dec)

Results are back (Update 24 Dec)

healthunlocked.com/thyroidu...

Hi guys (link above to original post),

Has been a few weeks since I posted. I had my thyroxine lowered a few weeks ago due to going over-active. Had my blood test the other day down the hospital after leaving it around 6wks as "Goosey" advised. I also did my finger prick private bloods (Blue Horizon) about an hour after I had been to the hospital, had the check plus 10 package. The turnaround was really quick and they emailed me the results today. Quoting the email they sent me:-

"This is a borderline hyperthyroid result (overactive thyroid gland). The high free thyroxine and low thyroid stimulating hormone levels are suggestive. You may have symptoms – including weight loss, rapid heart rate, sweating and anxiety, amongst others. If you are already taking thyroxine medication, you could be taking too much and downward dose adjustment may be in order. The positive anti-thyroidperoxidase and anti-thyroglobulin antibody results increase your risk of having, or developing, autoimmune thyroiditis, a situation in which your body manufactures antibodies to the thyroid gland. I advise you to contact your usual doctor to discuss these thyroid function test results – at least monitoring of the situation is needed"

As I have only recently started learning more about the disease after after listening to my doc for too many years I don't really understand the results and need them explaining to me in very simple and basic English so when I go back to my docs, we both know what we are talking about lol.

I see I am B12 deficient which is folate deficiency anaemia. I don't understand how to read my results on that one either. "Deficient <140 - Insufficient 140-250" ?????????? Is my thyroid problem the cause of my B12 being low or is it something that needs further investigation?

Free T4 results to the previous test (see link above) was 28.6 and on my recent blood test is is now 22.06. So it has come down with the thyroxine reduction but looking at "their" normal range I am still borderline overactive. Am I reading that correctly?

I have absolutely no idea on the immunology results as I have never had those done before.

Am sure my buddy Goosey will be around to help me translate stuff and also advise me as to what exactly I need to discuss with my doctor when I book into see her.

Thanks guys xx

24/12 Update: Tweaked my Levo at the beginning of the month because I had gone slightly overactive but was getting some really nasty symptoms. Taking 125/100 alternate days but for the first week I just took 100. Am feeling low anyway because of Christmas but seem to be getting all my symptoms back again when I went overactive. Nasty palpitations, anxiety, muscle weakness, weak bladder etc. Results below are private ones from Blue Horizon, the hospital lab ones came back borderline hence the alternate day dosing.

I am wondering if I should just stick to 100 because I feel so poorly at the moment and just don't know what to do to help myself, sat here on Christmas Eve all alone and in tears because I feel so poorly

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  • hI Hefner, sure g goose will have better knowledge on most of this stuff but just to say it looks like your b12 and folate are 'within range' and not deficient.they could still go up a bit but they are not too bad.ie your b12 would be deficient if less than 140 and folate if less than 10.4. Hope that helps at least a little bit!

  • arrrrrr I see now so the < 140 means that any reading "below" that would be deficient and the 140-250 is the range?

  • so the < means below and the > means anything over?

  • Yup you got it now!

  • yayyyyyyyyyyyyyyyyyyyy, still lots to learn here. Just relied on my doc to tell me results but was never given the results down on paper to see for myself. Things are going to be a little different now lol

  • And I know Goosey suggested this - so just to confirm - did you leave a nice long gap between taking your Levo and testing your blood this time?

  • I certainly did hon. 24hrs and got down to have them done at the hospital about 9.30am and did my finger prick test when I got home about half hour later and they arrived at the lab 24hrs later :)

  • I won't ever be having my bloods done again after taking my Levo :)

  • Jefner, TSH is suppressed, FT4 is a smidge over range, and FT3 less than halfway through range. Unlesss you feel overmedicated resist a dose reduction which will make FT3 drop. Read Treatment Options in thyroiduk.org.uk/tuk/about_... which discusses why some patients need suppressed TSH and over range FT4 to feel well.

    Antibodies are very high and positive for autoimmune thyroid disease (Hashimoto's). 100% gluten-free diet help some members reduce Hashi flares, symptoms and antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    B12 334 is low in range but isn't deficient. PA Society recommend B12 1,000 is optimal. Supplement 1,000mcg methylcobalamin and take a B Complex vitamin to keep folate good and the other other B vits balanced.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • but the doctors at the lab in their email (as shown above) say that I may be at risk from autoimmune thyroiditis if I stay on my current dosage!!

  • Jefner, the report is saying two separate things:

    1. TSH 0.03 is below range and FT4 22.06 is slightly over range but which they conclude you are overmedicated and should reduce dose.

    2. The elevated antibodies mean you are at risk of developing autoimmune thyroiditis.

    Your GP may agree with 1. and want to reduce dose. I suggested you resist it, or perhaps, negotiate a small reduction of 25mcg alternate days, because your FT3 will drop further with a dose reduction, and it is low FT3 which makes us feel hypothyroid.

    It is possible to have autoimmune thyroiditis for years before becoming hypothyroid but you are already hypothyroid, and high antibodies confirms autoimmune thyroiditis (Hashimoto's) as the cause of your hypothyroidism.

    Another reason for resisting a dose *reduction is that suppressed TSH means there is little to no thyroid activity which may reduce the frequency and severity of Hashi flares.

    *edited - I meant reduction not increase.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • gonna have to respond to this tomos hon as my brain is so foggy at the moment I can't absorb anything I am reading lol

  • Hi clutter, still brainfogged and need everything explained in the most basic of English for me to be able to absorb it right now, as there is still so much to learn about this problems which has plagued me for over 10yrs. All the information I read a few weeks ago has simply vanished from my brain and I am having to start again in relearning, so please don't lose patience with me, my ability to absorb information and retain it is pretty difficult these days.

    I didn't know that Hashis can come before Hypo, thought it was the other way around!

    1. The report is saying that I "may" develop Hashis because of the high antibodies or do I actually "have it" from my antibody results?

    2. How can the high levels of antibodies be reduced?

    3. If the antibody levels don't come down, is my thyroid doomed in being destroyed?

    3. As my T3 is currently within range, if I had a reduction in my levo, what happens for it to affect my T3 levels. Will it auto go lower?

    4. Having been reading up that T3 and T4 are supposed to work together in the body, so how come one can be high and the other low?

    5. The read that the thyroid gland uses iodine from the foods you eat to make T3 and T4, so how come (from a comment Goosey made on my original post) that I should avoid supplements with iodine?

    6. "Another reason for resisting a dose increase is that suppressed TSH means there is little to no thyroid activity which may reduce the frequency and severity of Hashi flares".......I have read and re-read this part and my brain just can't process it. Can you explain it again please...sorry :(

    4.

  • Hi Jefner, nice to hear from you!

    So, I’m going to jump in here and answer your questions. 

    “I didn't know that Hashis can come before Hypo, thought it was the other way around!”

    The hypo state is caused by the Hashi’s. Hashi’s is when you haven antithyroid antibodies, which attack the gland and slowly destroy it.

    As the gland is slowly destroyed, you become more and more hypo.

    “1. The report is saying that I "may" develop Hashis because of the high antibodies or do I actually "have it" from my antibody results?”

    I don’t know why they use that ‘may’ because with antibodies that high, you already have Hashi’s. I think it’s just a basic misunderstanding of thyroid on their part. I’m never impressed by what I see of the comments made by BH.

    “2. How can the high levels of antibodies be reduced?”

    There’s no general rule about this – what works for one, won’t work for another. But it’s a good thing to keep your TSH suppressed, as it is at the moment.

    Some people find that going gluten-free helps enormously to lower antibodies.

    Others find that dairy-free helps. Or sugar-free.

    Others find that taking selenium lowers antibodies – but go easy on that one, because too much selenium isn’t good.

    So, you have to experiment and see what works for you.

    “3. If the antibody levels don't come down, is my thyroid doomed in being destroyed?”

    Yes.

    “3. As my T3 is currently within range, if I had a reduction in my levo, what happens for it to affect my T3 levels. Will it auto go lower?

    Yes, it will. See below.

    “4. Having been reading up that T3 and T4 are supposed to work together in the body, so how come one can be high and the other low?”

    No, they don’t exactly work together. T4 is what we call a ‘storage’ hormone. That is to say, the body keeps a store of it (when it can!) to convert into T3 as needed.

    I won’t go into the technicalities at this point, but one molecule of T4 will be converted into one molecule of T3. So if T4 is lowered, T3 will automatically lower.

    T3 is the active hormone that every cell in your body needs. When T3 is low, it causes symptoms – which can be anything and everything that goes wrong in your body : hair-loss; weight-gain: depression; bad skin; digestive problems etc, depending on where there is a shortage of T3 in the body.

    Your main problem (after the antibodies) is that your body isn’t very good at converting the T4 to T3 – which is quite common when you have Hashi’s – which is why you have high T4 and low T3.

    Most of that T4 won’t be converted to T3 but will continue to slosh around in the blood stream, causing its own problems.

    The solution to that would be to lower your Levo slightly, but add in some T3 (Cytomel, Tiromel, Liothyronine, whatever). But doctors will rarely do that. So, most people – myself included – buy their own on internet.

    “5. The read that the thyroid gland uses iodine from the foods you eat to make T3 and T4, so how come (from a comment Goosey made on my original post) that I should avoid supplements with iodine?”

    OK, this is a very thorny question. :)

    Yes, thyroid hormone – T4 – is made up with 4 atoms of iodine – hence its name.

    And, some people are hypo because they don’t have enough iodine to make T4.

    However, that is not your problem. Your problem is that you have antibodies destroying your gland. Your disease is not one of the thyroid gland itself, but a disease of the immune system. The destruction of your gland is incidental.

    If you give your body more iodine, it is going to stimulate your gland. Stimulation of the gland is going to wake up the antibodies (hence the reason for keeping the TSH suppressed) and they are going to attack and cause more destruction, and make you even more hypo, and cause even more symptoms.

    I know this is controversial, but I’m speaking from my own experience. Taking extra iodine doesn’t automatically mean more hormone.

    Think of your thyroid gland as a factory. Half your factory burns down. Therefore, your output is halved.

    If you bring in extra building materials for your product (in this case thyroid hormone) what is going to happen?

    Is your half factory going to be able to step up its production?

    Or is all that extra building material going to lie around unused and get in the way?

    Your problem is not lack of building material, it’s lack of factory.

    “6. "Another reason for resisting a dose increase is that suppressed TSH means there is little to no thyroid activity which may reduce the frequency and severity of Hashi flares".......I have read and re-read this part and my brain just can't process it. Can you explain it again please...sorry ”

    I think she means ‘dose decrease’, not increase. Obviously you don’t want to increase your dose because the T4 is already over-range and you can’t use it. But change ‘increase’ to ‘decrease’ and Clutter is saying the same thing as I am about suppressed TSH. :)

  • Oh! Sorry! Forgot to say, your B12 is much too low.

    OK, it's in-range, but anything Under 500 can cause neurological damage. Optimal is 1000.

    When I had levels about the same as yours, I was slowly losing the use of my right arm. I had no strength in it, and couldn't raise it very much. Since I've supplemented with B12, I've got the use back fully.

    Low B12 will also affect your conversion of T4 to T3. So, very, very important to increase the level.

    Your folate isn't too bad. But when taking B12 suppléments, it's best to take a B complex with it, and that will raise your folate a bit. :)

  • Gooooseeeeeeeeeeeeeeyyyyyyyyyyyyyyyyyy!!!! there you are my friend :) have been desperate to hear from you hon xx. Sat here at the moment awaiting a phone call from my doc surgery cus can't get booked in until after Christmas which is bloody ridiculous but it's the way things are over here now.

    Just had a phone call from my fave doc at the surgery as they now phone patients first before booking in because they are too busy. He says my lab results are within the normal range from the hospital (obviously the ranges are different) but he is poo pooing my results and I treating me as someone who is getting the wrong information from people on the internet, when in fact, as I told him, I have been learning about the disease I have been researching in the correct avenues. Luckily when I spoke with reception I have managed to get in on a cancellation on Wednesday morning. In the meantime I have emailed my blood results for them to absorb in the meantime

  • GG, thank you, and *sigh* I did mean dose reduction not increase. I'll edit my post.

  • Jefner, when I had brainfog I forgot I'd read articles and later found I'd booked the same article up to 6 times with different tags. The good news is that when brain fog cleared a lot of the information had gone in, was understood and stuck.

    GG has answered your questions, admirably. Sorry about the confusion over 'increase' which I've altered to 'reduction'

  • you are a star Clutter thanks so much for your help, so very much appreciated. I did feel much better for a couple of weeks leading up to my 6wks on my first reduced dose but the last couple of days I feel all the symptoms coming back again, especially the tiredness and depression. The palpitations are better but I still feel the irregular heartbeat mostly at bedtime when I turn on my left side.

    How the hell do you clear brainfog?????? Some of mine I think is still due to menopause symptoms. Am now post meno but still going through the peak phase before they start to subside (doc showed me on a graph from my results).

    I read something and I just don't seem to be able to either absorb it properly or even remember which is why after just the few short weeks of not being here, it feels like I am having to start over again learning about it. Making notes this time :)

  • Jefner, my FT3 was below range and brain fog and mood started improving within a week of adding T3 to Levothyroxine.

    If palpitations were worse on the higher dose it's probably best not to increase dose. High FT4 made palpitations intolerable for me. I still get palpitations but not 24/7 and not to the extent I feel I'm going to pass out. Being aware of your heart beat at night is annoying. I found it helpful to sleep slightly raised with an extra pillow.

  • I don't get the palps 24/7 now since my dose was lowered about 7 weeks ago but still get the irregular heartbeat/fluttering in bed which is annoying as I always turn on my left side, and when I am ready to doze off I turn onto my tummy with my left leg stuck out to raise my tummy off the bed a little.

    As my FT3 is within normal range you said that it may go higher when I decrease my levo (which my results say I need to do again). And if I my FT3 levels increase then I get the return of my Hypo symptoms?

    As mine are within range I don't need to add more T3 do I?

    tbh I have absolutely no idea what I am supposed to do to find some normality in my life now :(

  • Jefner, I hope I didn't say FT3 would rise when dose is reduced. When dose is reduced TSH rises because FT4 and FT3 drop.

    FT3 is low in range and you may feel better if you add some T3 to a reduced Levothyroxine dose.

  • "Jefner, TSH is suppressed, FT4 is a smidge over range, and FT3 less than halfway through range. Unlesss you feel overmedicated resist a dose reduction which will make FT3 drop. Read Treatment Options in thyroiduk.org.uk/tuk/ab... which discusses why some patients need suppressed TSH and over range FT4 to feel well"

    you didn't hon, it was me as usual lol

  • Phew! ;)

  • so my Levo is telling my thyroid to produce more TSH because originally being hypo I wasn't getting enough?

    Now I am slightly over because of a fluctuation, my thyroid is producing a little too much TSH?

    It's the FT4 and FT3 levels that are more important because they dictate whether you feel crap or good?

    So by having to go slightly lower with my Levo, my FT4 and FT3 levels will drop which could lead to crappy hypo symptoms. So in effect the FT3 levels need a leg up with some extra to even out things?

  • you wouldn't believe the difficulty I am having understanding all this pmsl

  • Jefner, I've no difficulty believing it. We've all been there. Don't overload yourself. It's not a masterclass with exam to follow. Read and reread the information in bite size chunks and understanding will follow.

  • finding it so difficult with my stupid brain, it just won't work ffs arrrrrrrrrrrrrrrrrrrrrghhhhhh pmsl

    You are a babe to be so patient with me

  • Jefner, TSH responds to T4 and T3 levels. High TSH means T4 and T3 are low. Low TSH usually means there is sufficient T4 and T3. Levothyroxine is replacement for low T4. TSH will drop when sufficient T4 is detected.

    T4 converts to T3. It is low T3 which causes hypo symptoms.

  • find it very interesting that symptoms for both hypo and hyper and pretty much the same. Might explain why I am feeling low and fatigued again and my damn hair is still coming out. When you mentioned yesterday about possibly doing alternate days in a lower dose, I started to do that yesterday although instead of my usual 125mcgm I took only 100 yesterday and today and am wondering whether I should do that for a week or so and then do the alternate day thing?

  • Jefner, try 100/125mcg alternate days. You're not overmedicated so there's no need to do 100mcg for a week unless you *feel* overmedicated.

  • Interesting that my blood test results were also by Blu Horizon with very high FT3 but low T4 and raised TSH plus very high antibodies. I've been worrying about the high T3 and didn't once suggest I might be at risk of auto immune thyroiditis. I think because those other figures are high. They just suggested I must be on T3 only and might want to review my dosage. I think your figures look almost optimal and may need just a small tweak.

  • did you go to your doctor with your results?

  • For the Vitamin B12, the full reference range can be viewed like this :

    Result less than 140 is Deficient

    Result between 140 and 250 is Insufficient

    Result between 251 and 725 is Normal

    Result greater than 725 - patient should consider reducing dose of any B12 supplements they are taking.

    But having said all that, I completely agree with Clutter's comment that the Pernicious Anaemia Society's recommendation of aiming for a level of 1000 is the most important thing to look at.

    My level of B12 has been greater than 2000 the last 2 or 3 times it has been tested. Personally, I don't worry about it, because B12 is not poisonous and if my body wants to eliminate it, it excretes it in urine.

  • would you recommend I take a B12 supplement as Goosey mentioned?

  • Yes I would. Greygoose's advice is always very reliable. :)

  • thank you hun bun xx

  • so confused right now :(

  • Can you tell us what has confused you?

  • all of it hon, understanding how it works, what works, what doesn't, gonna have to re-read everything that I read a few weeks ago as most of it has emptied itself from my brain

  • okey dokey, I managed to speak with my other Doc this morning, very very briefly, about my high antibody results from my private blood test and also to find out the results of my standard thyroid test from last week, to which my doc decided to check my T4 this time. Here are the results from both tests, my private bloods being done half hour after I got home from hospital

    Private Test..........Free T4.................. 22.06 (12 - 22)

    Hospital Test Free T4................... 20.50 (9.0 - 26) - that's a big range compared to

    private!

    Private Test TSH........................ 0.03 (0.27 - 4.20)

    Hospital Test TSH ...................... 0.04 (0.27 - 4.20)

    Hospital test shows quite a bit of difference in my T4 levels or is that just my levels changing, bearing in mind the short gap in time when I did my private ones which was under the hour!!!!!

    Am I right in saying that because my TSH levels are low, is it because I am still taking a little too much Levo? I would have thought it the other way around? That bit I can't work out in my little brain!

    My Doc also mentioned that my antibodies would appear raised because of still needing a small reduction!!!!! Well if that's the case OK, but arn't my readings really high? He wasn't happy either that I had sought to have private bloods done and without seeing the results, poo poo'd them, but as I told him "GP's rarely refer for antibody tests due to the expense, so I felt I had no choice as thyroid problems are not straight forward and there is usually something else going on"......oh boy, how right I was it seems but I am no further forward!

    He did suggest that I possibly need to lower the dose slightly and I then mentioned about what Clutter had suggested in taking a slightly lower dose alternate days. Can't believe it but he actually said yes, could be a good idea and to try it!!!!!!!!!! (stands back in amazement pmsl).

    Unfortunately because it's now on my record that I have scoured the internet for help and to learn about my disease, it seems that I am now considered a hypochondriac, I can tell by the way the docs talk to me. Unfortunately they don't seem to like you learning about illnesses you have; they seem to think that we shouldn't know anything and become reliant on whatever they tell us. Well I have done that for too many years and where has it got me? It got me in the situation of doing everything wrong for the last 10yrs because I was told absolutely nothing about my illness when first diagnosed, so in effect because I wasn't doing things right, I have most probably lost many years to this damn disease in making me feel unwell all the time.

    I can understand them frowning upon reading too much on the internet as when discussing things with my doc some time ago, they said the doctors encounter a lot of people self diagnosing which can be a dangerous thing to do obviously. But as I said to her "people wouldn't need to do it if they could get an appointment to see their doctor within a reasonable timescale"!!!!!!!!! That's the the problem today unfortunately. If I rang for a regular appointment I can't get to see my doc until after Christmas!!!!!!!! That is totally out of order but unfortunately that's how bad things are now with the NHS because their books are flooded with immigrants and they are at breaking point. I said "why can't you refuse new patients if you have too many?". She said the Government don't allow it and they have to take all new patients on!!!

    So in a nutshell we are all doomed to a world of self helping as our only option

    Anyway, from my private tests on my antibodies, if everyone's opinion and experience, am I deffo Hashimoto's or just at risk of? She did tell me a few months ago that I didn't have Hashimoto which I thought a bit strange considering she hadn't sent me for any blood tests

    I have a 10min slot on Wednesday with her to discuss my results and as the 10mins will disappear in a flash and I will be shuffled out the door as quickly as I went in lol, I need to know exactly what to ask, as I can ramble on (which you have probably already noticed) and before I know it my time is up and I still have unanswered questions.

    xx

  • Jefner, You weren't overmedicated because your NHS FT4 20.50 isn't even near the top of range 26. Your GP reduced dose because she felt your TSH is too low. It's absolute rubbish to say antibodies are high because you are overmedicated or TSH is low. I had high antibodies when TSH was normal and before I was on thyroxine. Antibodies are a response to an autoimmune attack. They're high after an attack and subside until the next. UK doctors aren't keen on the term "Hashimoto's" and generally refer to it as autoimmune thyroiditis which is Hashimoto's.

    If your GP doesn't like you reading about your condition on the internet or anywhere else, tough! It's not for her to tell you what you may and may not read. If she has too little time to explain a chronic health condition to you, why should you remain in ignorance? You haven't self-diagnosed, whoever started you on thyroxine diagnosed you.

  • how come my FT4 readings are so different considering I did my finger prick test only around 30 mins after my hospital test?

    Are my TSH readings quite low then, enough for me to feel really crap?

    So my thyroid has been attacked then hence the high readings. What would have caused the attack - the fluctation in my thyroid going slightly over?

  • Jefner, your FT4 aren't so different. The different times and analysis machines and techiniques will give varying results. TSH 0.03 is low but shouldn't have any influence on how you feel. My TSH is <0.01 but it doesn't make me feel bad. Your immune system has turned against your thyroid gland. An attack on the gland will result in high antibodies, nothing to do with your FT4 being over range.

  • once my Levo dosage is corrected and settles down, will my antibody levels lower? What causes such an attack? Why am I feeling crap again?

  • went to chemist today to buy some B12 and B complex. Got the B complex but didn't come back with the B12 because I feel the dose is too high, ie. 1000mcg. As my levels are within range I don't want to risk taking anything that high, even the Pharmacist said it would be too high. Been having a look on Amazon and found this one which is a combined one and the B12 side of it looks a better dosage. What do you think all? Reviews seem OK about it too.

    This one looks to be better on the dosage of only 20mcg, but again not sure because the levels of other B vits seem a little high (scroll down to bottom of page to see ingredients)

    amazon.co.uk/HIGH-TWELVE%C2...

    or this one although I think the dosage of 500 might still be a little high?

    amazon.co.uk/Swanson-Vitami...

    here is a better dosage one from Holland and Barrett BUT the B12 is the Cyanocobalamin one which, from reading up contains cyanide. I believe the Methylcobalamin B12 is supposed to be better

    hollandandbarrett.com/shop/...

  • Link 1 - the product says it contains "cobalamin" which is a generic name for B12. Avoid this one. If they can't be honest enough to say exactly which form of B12 it contains (there are four different kinds), then don't buy it.

    Link 2 - contains cyanocobalamin - a synthetic form of B12 which never occurs in nature - avoid it.

    Link 3 - contains cyanocobalamin - comment as above.

    Regarding the dosage : 1000mcg would be a good dose. 20mcg would do absolutely nothing to raise your levels. Yes, your level is in range, but having a serum level below 500 pmol/L leaves you at risk of developing neurological damage. The reference ranges in the UK are far too low for good health. The Pernicious Anaemia Society is an expert on the levels of B12 needed in the blood and they recommend 1000 pmol/L. So you have some way to go to get to a healthy level.

    Can I also point out that B12 is not poisonous and ending up with a level higher than the reference range will do you no harm at all.

    stichtingb12tekort.nl/weten...

    Notice the quote from the above link :

    The safety of vitamin B12 treatment is further illustrated by the decennia-long use of hydroxocobalamin as an antidote for cyanide-poisoning, often because of smoke-inhalation. In the Netherlands ambulances, fire-departments and emergency-rooms have the Cyanokit at their disposal. In life-threatening situations 5 mg hydroxocobalamin is given intravenously within 15 minutes, an amount that corresponds with 5000 injections of 1 mg B12.10 Hydroxocobalamin reacts in the body with cyanide, and forms cyanocobalamin, which is excreted in urine.

    The serum value of B12 can rise to an average of 560.000.000 pmol/L within 50 minutes.11 If necessary this treatment is repeated within several hours, making the total dose 10 grams. The side-effects that occur, like reddening of the skin and urine and changes in heart-rate and blood-pressure are temporary and harmless. In short: 10000 injections a day are still not enough for an overdose of vitamin B12.

  • what B12 should I be looking for then

  • Methylcobalamin. :)

  • I had a word with a Pharmacist about dosage because I couldn't find one lower than 1000 and he said it was too high to take

  • Did the pharmacist explain why 1000 micrograms of methylcobalamin is too much?

    The amount that can be absorbed out of that 1000 micrograms is only a few micrograms. It is usually suggested that we need around 3 micrograms a day. The usual way in which we get that from our diet limits the amount we can take in to only a few micrograms more than that. But if we take a very large amount we can absorb some by diffusion. Again, we would only expect to get a few micrograms. I'd have to check my figures, but if we suggest that you could at most take in 10 micrograms of the 1000 micrograms it would be massively far away.

    If you are low in B12, you absolutely have to absorb enough for your body to recover.

    Do bear in mind that people who suffer from Pernicious Anaemia have injections of 1000 micrograms. Where the whole lot goes into the bloodstream. In one go. And they often start with loading injections - say every other day for 10 days or whatever.

  • Hi hon, from my results (at beginning of post) my levels are within range. I am not too keen in taking high dose stuff initially tbh just in case I have an adverse affect to them. It has been mentioned that it wouldn't hurt to bump my readings up a little.

  • am wondering also if I move onto B complex and B12 whether I should stop talking my Menopace which is pretty much a multi vitamin supplement

  • What you do want to do is make sure that your B6 intake isn't too high. I have no idea what Menopace is or its analysis.

  • Menopace is a supplement made primarily for menopausal woman

    vitabiotics.com/menopace/plus/

    Why is B6 so important as regards dose. It that the vitamin which they were raving about some time ago in causing cancer with taking too higher dose? Think that was the one and now only available in smaller doses

  • Because excess B6 is widely reported as having the potential to cause things like neuropathy. Both research and patient experiences seem to say the same thing.

  • what do you feel an acceptable dosage to work alongside my B12?

  • I have tried to explain that what appears to be a high dose because of the quantity in the tablet/lozenge/whatever actually isn't.

    The BNF in its discussion of B12 points out that 50 microgram doses are almost invariably not worth taking - with the sole exception of people whose diets have far too little B12.

    Do bear in mind that you can take one a week or one a fortnight if you really want. But unless you take a seemingly high dose tablet, absorption will be very low. Diffusion only appears to start "working" above about 500 microrgam doses.

  • The Pharmacist did mention that I can buy a 50 mcgm dose but even I thought that was too low. I didn't know (not having taken any yet) that you could take B12 in that way (once a week or fortnight) and still reap the benefits. I just assumed, being a supplement, that it needs to be taken daily

  • Well if you need 3 micrograms a day but are getting only 2, you are going downhill. If you took 1000 once every ten days (and if I am right that you might just absorb 10 of that), then it would just about manage to keep you level.

    If you tolerate that well, and maybe even notice some improvement, you are always able to increase frequency of taking it as much as you need.

  • does B12 stay in the body longer then than other vitamins?

  • Very difficult to answer. It varies.

    There is a very efficient recycling process whereby B12 goes into the gut and is then re-absorbed and re-used. However, the efficiency of this process can be severely reduced in some people.

    Even a slight reduction in efficiency can occur with the result being a steady reduction in B12 levels.

    Also, do bear in mind that serum B12 tests are notoriously unreliable.

  • Just been having a mooch on Amazon reading reviews from buyers are different brands B12 and came across a book called "Could it be B12" that a lot of people are saying is a valuable read. I have just purchased a copy; looks to be a very informative book

    amazon.co.uk/Could-be-B12-E...

  • 1000 of B12 isn't a high dose. You will not overdose on that amount. You will pee out the excess and your pee will be a yellowy pale green colour and perfectly normal. Please try it.

    My B12 result was 595 and I supplemented 1000 daily for around 6 months.

    Jo xx

  • Hi Jo, many thanks for your reply. Did you take your supplement daily or so many a week? How come you only took it for 6 months, did you not find symptoms come back when you ceased taking it?

  • Hi, I took 1000 a day with a b complex to keep the b's in sync and am still waiting for symptoms to come back and when or if they do I will start taking them again.

    Jo xx

  • Good evening fellow warriors!!

    Well went to the Docs this morning and I got her!!!!!! Quick 10min appointment discussing my hospital lab results. She is still concerned that I am reading stuff and worried it will make me paranoid. As I told her, all I am doing is learning about a disease I have because it's my body and I have to drag it around with me day after day!

    She never even mentioned the private lab test results I had done, despite emailing her a copy. We had to discuss them when I produced a copy from my handbag (snigger snigger). I said I was very worried about the high antibody levels and I was gobsmacked when I heard her say that is generally what happens when you have "autoimmune thyroiditis". Pretending to not know what that was I asked "isn't that another name for Hashimoto". She said yes and actually admitted that I had it.

    I wasn't particularly happy at that point, because when my thyroid first fluctuated around 8 wks ago and I went to see her about, along with a list of stuff I had been reading up on to ask her, she took the list from me to read through (because of time) and completely dismissed Hashimoto's, in fact her very words were "you can forget Hashimoto's, you certainly don't have that"!!!!!!!!!!!!!!!!!!!!!!!!

    Now all of a sudden I have it (wtf). Counting to 10 I gently reminded her of what she said and she actually apologised. I am of the belief that if I had not had my antibody bloods done, there would have been no mention of Hashi's by her and I would still be being treated for just Hypo, so I consider that I am now one up on things.

    What also got my back up was when I suggested to the other doctor (over the phone) about alternating my dose between 125 and 100, which he agreed to and he also wrote the words "autoimmune thyroiditis" in the memo so I now have it in black and white. When I saw his memo to HER today, it was worded that HE had suggested that. I gently reminded her that it was ME that had suggested alternating the dosage (as suggested by Clutter).

    I also mentioned about T3 and I was told to completely ignore T3, it is of no significance!!!!!!! She also informed me that because I have had the problem for just over 10yrs now, it was inevitable that my thyroid would be killed off by my antibodies. I asked about how I get those levels down, and she just couldn't give me an answer.

    Things have now been left again for another 6 wks until my next blood test and she also advised I book a double appointment (20mins) to see her as 10mins just isn't enough.

    I now need to spend some time reading up on Hashi's to see what I can do to help myself. There is a couple of books on Amazon where the reviews seem good.

    My question is now, how the hell do I deal with Hashi's? Have read that diet can play a big part in controlling antibodies, have seen stuff on the Paleo diet. I mentioned Gluten Free to her and she didn't rate it. Can I actually reduce them or will they continue to destroy me from the inside out?

    Are there any basic rules for me to follow, or arn't there any?

    Now even more confused.com lol

  • Hi guys, so very overwhelmed and frustrated right now, feeling rough and really do need your help :(

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