So a few weeks back i posted my (private) results which showed me as possibly a poor converter of t4 to t3. I had been re-experiencing; hair loss; tingly scalp/mouth/tongue and hands; really stiff muscles and really sore tendons. My vits were also low...
Ive umm-ed and ahh-ed about going back to my GP re the low B12. As he is very difficult. He refused to treat me for hypothyroidism even though I at one point had a TSH of 7, and bad symtoms). Because he refused to treat me, I was eventually diagnosed with ME and one of the 'treatments' was B12 injections about 6 years ago. (But he wasn't involved in that – I then also got to see an endo who trialled me on levo and then kept me on it. He wrote that my previous symptoms were probably due to being hypothyroid rather than ME, and that I probably had a problem with conversion. However my surgery seem to overlook that letter out of the hundreds of letters that went back and forth whilst trying to find out what was wrong and happily still see me as someone who has ME.)
I don't really now how to self supplement, so I'm just chucking everything at me! Since I last posted I went out and purchased some, Holland and Barrett 15mg Iron with vitamins and minerals. ( Contents: vit C 125% NRV, B1 364%, B2 143%, Niacin 63%, Pantothenic Acid 167%, B6 286%, B12 (cyanocobalamin) 800%, Folic acid 100%, Biotin, 100%, Calcium 16%, Copper 120%, Iron 107%, Molybdenum 60%.)
I also was recommended Hairburst for the hairloss by a friend. There were expensive but I thought why not, in for a penny in for a pound! Contents: Vit A 100%, D3 50%, C 125%, Thiamin 454%, Riboflavin 357%, Niacin 31%, B6 357%, Folic acid 100%, B12 (cyanocobalamin) 800%, Biotin 500%, Pantothenic Acid 1666%, Calcium 25%, Zinc, 100%, Copper 100%, Selenium 100%.
And then I just thought I had better be safe than sorry as I am sure I have a lot of stomach acid and probably a difficulty to absorb B12, so I got a Better You B12 spray (methylcobalamin) 1200mcg and a Better you D3 spray 75ug.
This lot I have been taking for just over a week or so. Amazingly my hairloss has definitely slowed already! My tingling is less pronounced, and so is my stiffness etc.
I don't know whether to continue on this regime and get tested privately in ??? many months time and continue the way I am. Or wherever to stop, make an appointment to see GP, be brave and ask about B12 injections and a possibility of going back to the endo, AND making a private appointment with an good endo who has been recommended and actually is part of the same endo team on the NHS around my way.
I know this sounds stupid, but my GP and I really don't see eye to eye, hence the fact I am trying to self treat rather than go and have a pointless appointment that makes me feel like a neurotic hypochondriac! But there is part of me saying 'try it as you don't know what you may get if you do manage to get a referral and B12 injections!!'
Dilemmas... help?
Do I try and get back in with the endo both via NHS and private via GP and get stuff on NHS
Do I ignore GP and go private to endo, and get stuff privately? (money is an issue-isnt it?)
Do I continue self supplementing and if so how?
Sorry.... mad ramblings....
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Gilbo72
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My understanding is that the fact that you've been taking B12 oral spray will skew any results now, you have to be off B12 supplements for 4-5 months to get back to baseline. And if you've taken folic acid/folate then that masks signs of B12 deficiency. It would have been better to follow the advice you were given previously and pursue testing for B12 deficiency/pernicious anaemia first. If you do have either then the oral spray wont be enough to treat it.
I don't really now how to self supplement, so I'm just chucking everything at me!
Please don't do that, you could end up with too high levels of something, and not enough of others. We only supplement where needed.
Holland and Barrett 15mg Iron with vitamins and minerals.
Unfortunately, H&B own brand, along with high street and supermarket own brands, aren't worth spending money on. They tend to use cheap ingredients and cheap ingredients are usually the wrong form and the least absorbable. Multi forumula supplements are rarely a good idea.
What you have with this supplement, besides a shed load of unpronounceable unnecessary fillers/excipients, are
Folic acid (cheap) - methylfolatle is the recommended form
Vitamin B12 as Cyanocobalamin (cheap) - methylcobalamin is the recommended form
Not enough Vit C to do any good also low levels of other vitamins which wont help much.
Calcium - this should be tested for and only supplemented if found to be deficient.
Copper - this has to be balanced with zinc, and zinc is not included, and you don't know if you need it.
Iron - this affects the absorption of everything else, iron needs to be taken 2 hours away from other supplements.
Your ferritin level was 63.1 (13-150) which is a little under half way through range. This would suggest that eating liver, liver pate or black pudding would be much better to raise your ferritin level than taking an iron supplement.
A good B complex, one with folate in not folic acid, was suggested. That would take care of your low folate level and far superior to what you have in the other supplements. Look at Thorne Basic B or Igennus Super B.
As for the Hairburst, not sure which one you have but looking at the basic one again a multi supplement with a lot of the ingredients at low levels, but it contains
Folic acid - again
Cyanocobalamin - again
Copper - again
and it contains Soya which we Hypos should avoid.
You're also taking Vit D - what about it's important cofactors magnesium and Vit K2-MK7 which are necessary when taking D3?
When adding supplements, we don't start all at the same time, stagger them. We start with one, give it a week or two and if no adverse reaction then add in the second one, give it another week or two and if no reaction add in the next one, etc. By doing it this way, if you do have any reaction you will know what caused it.
In your previous post Judithdalston suggested you check out some of my replies to other members regarding vitamins and minerals? Did you do that? I obviously didn't see your other post or I would have responded, but when Judith suggested you look at my replies, you could have tagged me and I would have responded to that and given you some suggestions.
I didn't go to my GP as I keep explaining he is not an easy man. He would have shouted me out of the room if I had asked about B12 deficiency/pernicious anaemia. Everything is down to the fact I have ME in his eyes.
I tried to find the the various advice you had given to others in their own posts, but it was difficult and confusing. So I trawled through lots of posts I could find here. I don't know how to tag members. Can I do that if I want people to answer? I went for the sprays as the contained methylcobalamin and it has been also advised that they are absorbed better than pills.
I was also given the advice to go straight to T3 and not bother with vitamins, but in other peoples posts, the advice is to get your vits up first.
I don't understand what folate and folic acid are and how long do they mask results?
You suggest eating liver and black pudding but how often? I have also read that to get your levels up it sometimes can be as much as everyday??
Sorry Suzy I am so confused. I feel like I have spent a fortune on a load of useless supplements and blood tests already and am seen as someone who has some knowledge how to get to top health when I have no idea...
So if I stop all supplements, wait for my DiO2 result, (another 2 weeks or so) then go to private endo and explain that I tried to supplement do you think this would be the best course of action?
I don't understand what folate and folic acid are and how long do they mask results?
Humanbean explained what folate and folic acid are in your previous thread
Folate is one of the B vitamins - vitamin B9. Low folate makes it difficult for the body to make use of vitamin B12. Note that folic acid should be avoided.
I didn't go to my GP as I keep explaining he is not an easy man. He would have shouted me out of the room if I had asked about B12 deficiency/pernicious anaemia. Everything is down to the fact I have ME in his eyes.
Is there another GP you can see, or change surgeries? Unfortunately, once we've been labelled with ME it's a get out clause for doctors, they don't have to bother any more, they blame everything on that.
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I was also given the advice to go straight to T3 and not bother with vitamins, but in other peoples posts, the advice is to get your vits up first.
The advice was:
The odds are you will also need additional T3. In fact, I think it's a good idea to go straight to the additional T3 and not prolong the agony thinking that improving your nutrients will sort out conversion. The odds are it won't, because there are so many things that can affect conversion, like having Hashi's. And there's nothing you can do about that. Though, of course, you still need your nutrients to be optimal, even if they don't improve your conversion.
We need optimal nutrient levels for thyroid hormone to work properly. Ferritin in particular needs to be at least 70. But the Hashi's complicates things as well. Your worst level was B12 and it was pointed out how important it was to get that sorted. Yes, you could start T3 now, but you need to work on the rest as well.
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I don't know how to tag members. Can I do that if I want people to answer?
Yes, members will respond to tags. Here's how to do it:
1) Put @ in front of their user name but leave no space
2) A list of suggested names will pop up (you may need to scroll down a bit).
3) Click on the name of the member you want.
4) Check to see that the member's name in your message has turned blue like this
Gilbo72
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You suggest eating liver and black pudding but how often? I have also read that to get your levels up it sometimes can be as much as everyday??
Limit liver to no more than 200g per week due to it's high Vit A content. With your level of ferritin at 63.1 you wont need anywhere near that much. A meal of, say 100g per week will be plenty, or maybe 140g once a fortnight.
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So if I stop all supplements, wait for my DiO2 result, (another 2 weeks or so) then go to private endo and explain that I tried to supplement do you think this would be the best course of action?
I would hold back on seeing a private endo. When you have your DIO2 results, post them on here. There are some members who can interpret them and advise you. We can also give suggestions on vitamins and minerals and thyroid levels and what thyroid meds may be needed. Often this is more than you'd get from paying to see an endo.
I would come off the H&B supplement and I don't think the Hairburst is worth continuing because it's another multi with poor ingredients.
I would pursue the B12 deficiency/pernicious anaemia testing with a different doctor. List any signs of B12 deficiency you have experienced or are experiencing now and take that along with you - checklist here b12deficiency.info/signs-an...
If you absolutely have not/do not have signs of B12 deficiency then you could start self supplementing with B12 and B complex (one of those recommended above). But from the advice in your previous post, the general consensus seems to be that you need testing.
...'Is there another GP you can see, or change surgeries? Unfortunately, once we've been labelled with ME it's a get out clause for doctors, they don't have to bother any more, they blame everything on that....'
Thanks Susie, sadly there are no other GPs or surgery's. The one other GP I could perhaps have seen, I found out has gone on sabbatical due to family and health reasons and the surgery have no idea when she will be back, perhaps subconsciously I panicked. That is also why I am reluctant to go, any problem I have is ME , if I don't go, they can't tinker with my levo.
So if I pursue the B12 deficiency route with the other GP, he will never accept the private blood test result. So I will have to be tested again - if I can even convince him – but are you saying I will have to wait 5 months to get back to base level? My heart is sinking...
Are there different types of B12 testing that I could ask for? Should I ask for liver or kidney tests? I do feel if I have a glass of wine my right kidney aches for the next day, would that be connected to anything?
What is folic acid? a type of B9? That is where the confusion lies.
What is folic acid? a type of B9? That is where the confusion lies.
Folic acid, otherwise known as folate (folate is the form of folic acid found naturally in food), is exactly what Humanbean said, a B vitamin - B9, and it is vital for the formation of red blood cells, along with B12 - they work together.
are you saying I will have to wait 5 months to get back to base level
How long have you been taking any form of B12? How long have you been taking the supplements containing folic acid?
Are there different types of B12 testing that I could ask for?
First test is usually serum B12. If that comes back low then if you have signs/symptoms of B12 deficiency (and even if your B12 is not low) then further testing can include Methylmalonic Acid (MMA) test and Homocysteine and this should show if there is any B12 deficiency/pernicious anaemia.
I do feel if I have a glass of wine my right kidney aches for the next day, would that be connected to anything?
I don't know. Does it ache if you don't have any wine? If so then it needs investigation. If not then I would say why bother having the wine if it causes problems?
As said I've only been taking these supplements for just over a week. (But It does seem to have slowed the hairloss already)
Will this massively skew new B12 tests?
The test in September was from Blue Horizon B12: 224 (<145- Deficient, 145-250-Insufficient, >550- ideal) But I don't really know what that was testing. Do you think that was serum? The comment from them was insufficient and should be supplemented.
Yes to the kidney and only after wine and just the one! I wondered if there was a B12 / kidney connection... (bit random I know... you can see what fun I would have with the GP with that one...!)
I should also mention, the afore mentioned GP when trying to find out what was wrong with me as he didn't think I had a thyroid problem, took a blood test several years ago and rang me to see him immediately as "I had the kidneys of an 80 year old!" I went to see him, he didn't elaborate, he took another blood test and said everything was fine. And that was the end of that!
It's quite possible that one week's worth of B12 supplement wouldn't make too much difference so I would stop now. Have you checked the list of signs and symptoms of B12 deficiency? Have you had, or do you have now, any of them?
The Blue Horizon test was Serum B12. They have classed it as insufficient and should be supplemented. But it's not the number, it's the symptoms that are important. Some people have had a result in the 300s and are on B12 injections, because their doctor listened to them and took their symptoms into account.
The Active B12 test has a much lower range, something like 25-165.
Yes, only a little bit, I am so used to feeling like the way I do. And I have always put it down to my thyroid.
Quite often have a fizzing/prickling/pins and needleley thing in my tongue, scalp head and (hands and arms mainly in morning). Occasional tinnutus (I thought my hearing is starting to go). When I am tired I act drunk, can't speak, very forgetful, can't remember words, names, and bump into things. Before I started supplementing I was very tired and forgetful. Restless legs at night. I have had problems with running, gait/pelvic floor. Always burping, gassy. Chronic constipation. A lot of sighing. Sleep disturbances, nocturnal panic attacks. Swollen tongue I guess all of these could come under the B12 umbrella. Other symptoms not here are hairloss, water retention, and the really tight muscles and sore tendons.
However, the hairloss, tight muscles/tendons seem to have got a little better since last week.
So maybe I could go straight to asking for Active b12 and MMA test?
That would probably be the iron content on those multis stopping your hair loss.
That B12 test was serum. And your B12 is insufficient. Stop taking the supplements now, and wait a few weeks before testing, if you going to test.
It's highly unlikely that your doctor knows anything about B12, anyway - or any other nutrient. They just don't do them in med school. You'd be far better sorting this on your own, with the help you get on here. I wouldn't have said that B12 result was low enough to warrant Pernicious Anemia tested - although, of course, you can if you want - but it doesn't need raising. But, with a good form of B12 - methylcobalamin, not cyanocobalamin. Unless, of course, you have a lot of PA symptoms. The symptoms are more important that the blood test result.
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