I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
If you have any signs or symptoms from that list the make a note of them and go and see your GP. With your level that low I think you should be tested for B12 deficiency/Pernicious Anaemia so ask if you can have that tested.
Folate: 9.23 (8.83-60.8)
B12 and folate work together. Although it is within range, which ill probably satisfy your GP, it's barely scraped in and it is recommended that folate be at least half way through range. Yours certainly needs increasing. You may get folic acid prescribed by your GP, if not you can buy methylfolate, and it's also in a good B Complex. B Complex is needed when supplementing with B12 to balance all the B vitamins.
HOWEVER, don't start folic acid, methylfolate or a B Complex until further investigations have been done regarding your B12 and you have been started on B12 injections or supplementation, as folic acid/folate masks signs of B12 deficiency.
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Vit D is good, the Vit D Council recommends a level between 100-150nmol/L. You will need to be on a maintenace dose of D3, what dose are you taking? And are you taking it's important co-factors magnesium and Vit K2-MK7?
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Ferritin is good which is quite amazing as your GP test showed 51 (10.0-291.0) which is 14% through the range. Now it is 112 (13-150) which is 72% through the range. How have you managed to raise it as you said you didn't like liver. Was it just black pudding and pate?
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TSH is low, but that's not a problem, 1 or below is best for us Hypos.
FT4 is over range suggesting possible slight overmedication.
FT3 is good
Your FT4 and FT3 show that your conversion is OK, the ratio being 23.3:5.88 = 3.9:1 and good conversion takes place when the ratio is between 3:1 and 4:1
You already know that you have Hashi's and you were given a lot of information in your previous post about how to deal with that. Are you now gluten free and supplementing with selenium? Selenium also helps with conversion so you may be able to improve yours.
Thank you for your very in-depth reply, it must have taken you sometime to write the reply so I’m very much grateful and appreciate your help!
Vitamin B12
Will my GP know / understand the 'normal' serum B12 threshold (200 pg/ml to at least 450 pg/ml). She tested my B12 in the March/April and said it was fine therefore I’m worried she might refuse the B12 deficiency/Pernicious Anaemia test. Do you think showing her the results would help convince her?
I’ve started taking Berocca from last Friday, after the blood test, to try give me a boost (My mum recommended it and said it helps with energy). Do you think I should stop taking this to gain a better insight into my blood if my doctor does allow for the blood tests?
Vitamin D
I’m using D3 25ug (1,000I.U.) – one tablet a day. I’m not currently taking magnesium and Vit K2-MK7. Where is best to buy these and do you take them at the same time as the Vitamin D?
Ferritin
Well that Ferritin test was March to be fair – so could have change over time? I’ve not had much pate or black pudding, just what I normally eat.
FT4/FT3
I’m glad that I don’t have a conversion problem, I was worried that was the case. Do you think I should reduce my levothyroxine or alternate 100 one day and 125 the other if it’s too high or just leave it for now?
Hashimotos
Yeah, done my first week gluten free.. it’s not easy but getting there with the learning and finding hidden glutens (Thanks for your links). Where do I get selenium from? I will make sure I start using this.
B12 - GPs tend to know very little about vitamins and minerals, they're not taught nutrition. I doubt very much if your GP knows about the recommendations in the book about the threshold. (You could always get the book and point the recommendation out.) We often find that doctors are a law unto themselves, plus they have delicate egos, they don't like patients understanding their condition, and they don't like patients questioning what they say.
However, it is symptoms that they should be taking into account, so listing any that you have from the link above should help.
Do you know what your level was back in March when your GP said it was "fine"?
You could pop over to the Pernicious Anaemia Society forum to ask what they suggest, they may or may not agree with what is written in that book, they don't always agree with what we say here on the Thyroid forum, but then again they're not thyroid patients.
Well there's a lot of nasty stuff there that we don't need and would be better off without - bulking agents, flavourings, colour, artificial sweeteners and other gunk.
And taking the list of nutrients there is
Folic acid - it really should be methylfolate
B12 as Cyanocobalamin and it should be methylcobalamin
B vitamins, which are the main supplements included, are best taken as a decent quality B Complex. Personally, I wouldn't bother with that and because it contains folic acid you shouldn't take it anyway because you really do need to be tested for B12 deficiencyh/pernicious anaemia in my opinion.
Vit D - I would continue with your 1000iu daily as a maintenance dose. As you have Hashi's you would be better off with an oral spray as it bypasses the stomach for better absorption. BetterYou do an oral spray in 1000iu strength.
Here is an article by the Vit D Society about the important cofactors needed when supplementing with Vit D vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
BetterYou do a combined D3/K2 spray but I think that may only come in 3000iu strength.You could take that every 3rd day, or you could buy some K2-MK7 softgels such as Health Origins wich is the one I use bigvits.co.uk/product.php?p... (they do a smaller count bottle but not such good value) and take 1. Doesn't need to be taken at the same time as D3 but as it's fat soluble it does need to be taken with dietary fat.
Ferritin - you've been luck there, worth repeating at some stage to make sure it doesn't fall again
FT4/FT3 - if you reduce your Levo then as well as FT4 reducing, your FT3 will also reduce. But if you continue to have an over range FT4 there is the danger that you will start making reverse T3 rather than FT3. So this is a tricky one. You have Hashi's, which messes with your levels anyway. It might be worth reducing by just 12.5mcg and see how things are, so yes you could alternate 100/125mcg. You could repeat just the TSH/FT4/FT3 a couple of months after reducing your dose to see what's happening with your levels and how you feel. Thyroid Monitoring with Medichecks is all you need now that you've got your current nutrient levels, and antibodies don't need testing again.
Selenium is easily found, online is best for decent brands. Make sure you get selenium l-selenomethionine (or a yeast bound selenium) as they are the most absorbable forms. Avoid selenite or selenate forms as they are the least absorbable. I like Cytoplan, it's a yeast bound one but they say it's suitable for people with Candida and yeast sensitivities, but it only comes in 100mcg. Some selenium supplements have an unpleasant odour, the Cytoplan one doesn't.
You could look at these on BigVits (make your P+P worthile) but I've not used these
So in your opinion, do you think it’s my vitamins that are making my energy levels rubbish not CFS
Well, I do think that the B12 is a problem, it's marked as Insufficient on your results sheet. There are plenty of people who had serum B12 in the 300s and ended up on B12 injections. Have you got any of those signs and symptoms listed in that link? And your folate has to come up. If it was half a point lower it would be classed as folate deficiency.
You could have a look through the NICE Clinical Knowledge Summary for B12 and Folate deficiency,
◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.
◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.
I think CFS is a dustbin diagnosis, it's lazy, they give you that label so they don't have to bother doing anything else, then everything is blamed on your "CFS". My opinion only but I do think your B12 and Folate need looking into.
It's up to Nicolet what she decides to do with any suggestions given, they're only suggestions from experienced patients, not advice from trained practioners .
The evidence from Hashi's patients here is that an oral spray gives better absorption. I don't have Hashi's and find Doctor's Best softgel, with just D3 and extra virgin olive oil, is perfect for me. I would never use a D3 tablet as they have excipients/fillers (which I prefer to keep to a minimum) and no oil to help absorption.
She may find that changing to an oral spray will nudge her level up to the upper part of the recommended range and she may be better there, I know I am, I get bone pain in my shins if I am nearer the 100 mark but fine if I am around 150.
Hi Susie, sorry for the very delayed response - I’m back at work now so just collapse when I get home.
I will try the sprays and everything you have suggested.
To update you, I went to see my GP about getting tested for pernicious anemia. Again been let down. The GP said my B12 is not low enough and my folate is good so said there no chance it’s pernicious anemia (no matter how much I fought for it). GP right out refused to do the pernicious anemia test and only offered to retest my B12.
So see being labelled with ME they will never look into anything again - I’m so upset and frustrated now! What do I do? Is it worth trying a private doctor or are they all the same? xxx
Do you have any signs and symptoms of B12 deficiency as listed in that link I gave? If so did you list them to show your GP? They are supposed to go by symptoms, not numbers.
You could pop over to the Pernicious Anaemia Society forum here on Health Unlocked and list your symptoms for their comment. They will have different ideas about B12 levels (but it's not a thyroid forum) but if they think you should push for further testing they may be able to help with how to get it.
So I am still in the early phases of learning about this disease and what to do in the face of hopeless GP care, so the real experts here feel free to correct me if necessary! My Thyroid medication levels are still a work in progress (yours look much better than mine!), and over the summer I have been feeling really terrible. Worse than pre-diagnosis. I hadn't connected the dots but due to the uphill battle with the GP just getting the thyroid stuff sorted I got some medichecks tests run. I went for the vitamin checks just out of interest really, but it turned out my b12 was at a similar level to yours. (look at my other threads for the back story, or we run the risk of me boring you to death with it!) Long story short, I have ended up using some high-power transdermal b12 skin patches and a b vitamin complex. I started with this only just over a week ago, and I cannot believe what an impact they've had. I'm back to how I felt about a year ago with similar tsh/t4 levels. Symptoms I'm rid of include: Most of the fatigue, Constant dull headache, tinnitus with a weird feeling in my ears, disturbed vision, weak grip, sore thumbs, achy leg bones. I probably should've pushed for an MMA test and injections based on symptoms, but I decided to self medicate to prove (or disprove) and to get rid of the symptoms while I sort the Thyroid stuff, and I'll come back to the b12 issue if I need to at later date.
I tested negative for PA antibodies, but the test is unreliable missing 50% of PA sufferers. However, if you test positive, its irrefutable. The decisive test to do next would be an Active b12 test (it's much more accurate than the Serum test the NHS use) with a follow up of MMA testing. The MMA will show beyond any doubt if you're deficient at a cellular level. I know for certain that GP's can request this test, but from the sounds of it you've got no chance with your GP, same as me. You can get it privately at: nutris.viapath.co.uk/pages/...
Loads of places (e.g Medichecks) do the active b12 test, but the difference with viapath is that they also do the MMA at reasonable cost. As others have said, it's important not to supplement b12 or folate until you're sure you've exhausted (or you're exhausted with) blood testing and GP bashing. I believe Biotin can also skew these test results, so watch out for that too. Good luck! x
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