Lots more googling and I realise that the majority of my current symptoms are quite likely to be because of my B12, folate, ferritin and D3 being low - even if my GP insists they are within range - I’d like to see how much better I can feel if I get these up a bit.
Are all supplements created equal? Any brands that folk on here recommend in particular?
My main worry about supplementing things is a fear that I could mask something or take too much - can I just insist on regular blood tests or is my GP able to refuse?
So ... am going supplement shopping!! Would be grateful to hear what others feel work best? Thanks muchly X
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The most pure supplement brand are Pure Encapsulations. You can get them from Pure Bio, The Natural Dispensary and Amrita Nutrition website (only this one if you are working with a practitioner). All supplements aren't created equally and these ones are independently tested and are hypoallergenic.
Opti Ferin C is the name for Pure Encapsulations Ferritin and I use the liquid B12 and pay privately for blood tests through Blue Horizon. I would suggest getting a blood test to determine levels then testing around 3 months later.
If you read Izabella Wentz articles and books, they have been a great help for me. xx
This is so helpful! I’ve been trying to get hold of Pure Encapsulation here in the UK for a while. Do you have to work with a practitioner for the Natural Dispensary as well? I’ve just looked at their website and to see prices you have to create a login - which asks for a name of your practitioner.
glad to be a help 🙂 no you don't have to work with a practitioner for the natural dispensary, i always put izabella wentz as she told me where to get them from but I don't work with her directly, so maybe just put her. If they haven't got what you want advertised you can email them as well and they will order certain ones in for you from abroad 🙂xx
Hi there.I never heard of Pure Encapsulation supplement. What kind of supplement is that? Also can I have the name of that website that you are talking about please. Thanks
They are well regarded supplements in their purest form, and recommend by the Thyroid Pharmacists, Izabella Wentz. See abigailfrances post above for the website details. Hope that helps.
Only start one supplement at a time and waiting 10-14 days to see how you react.
Vitamin D, many of us find that Better You vitamin D mouth spray is good as avoids poor gut function.
Your GP ought to prescribe ferrous fumerate for you low Ferritin
If taking B12 sublingual lozenges, then recommended to also add a good vitamin B complex to keep B vitamins in balance.
If you start or are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Have read through your previous posts/threads and cannot see your results for the Thyroid - just the TSH and vitamins and minerals. Perhaps I have missed something important. Do you have Hashimotos ? I did read you now have an increase of T4 do you have results for FT4 and FT3 as well as Anti-TPO 7 Anti-Tg ?
If you have Hashimotos - then healing the gut is so important - so you are able to absorb both the Thyroid hormone T4 you are taking and also the vitamins and supplements. Many people struggle with increased doses when vitamins and minerals are at the low end of the range. Do hope that is not the case for you. Vits and minerals do take time to work - in some cases at least 3 months ....
Re Vitamins - do not hold your breath that your GP will help you - as I believe you e-mailed them ! Great approach - but sadly they know so little about the need for optimal vitamins and minerals in order for thyroid hormones to work well in the body.
Have you read up on Iron supplements here on the forum ? Some iron supplements are better than others - and humanbean has excellent knowledge. I do not - but do know that VitC should be taken with each dose Ferrous Fumerate is the usual one mentioned on here.
VitD - I would supplement at least 5000 IU's during the winter months and re-test before summer - your level needs to be around 100. I take Healthy Origins from Amazon - but others use a spray for under the tongue. Also take Magnesium and VitK2-MK7 - to ensure calcium is directed away from the arteries and soft tissues.
B12 - I would take Jarrow Methylcobalamin 5000 mcg from Amazon and also a good B complex to keep all the B's in balance and to give you Folic Acid/Folate. B12 and Folate work together in the body. I use Thorne Research B complex - again Amazon. If you go to the main website of this Forum you will see a link to Amazon so the charity Thyroid UK earn a small commission ....
Thank you so much for the info! I hadn’t realised supplements were so expensive - no wonder NHS won’t prescribe them!
You mentioned that some people struggle with dose increases when vitamins and minerals are low... could that be why I now feel as though I have a constant hangover, massive fatigue and constant nausea? I seem to feel worse now than ever and can’t even remember how I felt before the increased levothyroxine!
I can’t remember being ill before ... but right now all so want us for someone to admit me to hospital and let me out when everything is back to normal. Ridiculous I know, but this level of unwell is pretty scary.
Yes it can be quite a journey. I was not diagnosed until I was 59 back in 2005. If you click onto my name you can read my Bio - only takes a couple of minutes 😊
Have you posted your thyroid results ? Do you have Hashimotos ?
Most people poorly until they can improve vitamins and minerals ....
All I know is that my TSH started at 7, is now 2.6 and I still feel rubbish. I got gp to do the vits/mins based on what people suggested on here, but they don’t seem to want to do anything other than TSH and T4. I’m assuming it’s hashimotos but genuinely no idea!
Just read your bio ... jeez you’ve been through it! My wife has fibro (diagnosed a couple of years ago) so we’re a right pair. She’s now managing it really well with the smallest amount of CBD oils/pastes and is like a different person. Am assuming if I have hashimotos that CBD should help me too - but kind of wanted to get everything right before I go off piste (!)
I’ve been in to Boots to stock up on supplements (until the proper ones arrive from Amazon) ... I figured better than nothing at least! pharmacist said it could be the levo making me feel this bad ... if so there’s no ruddy hope lol!
Anyway, thank you so much again ... I can’t exprss enough how much it helps right now to get the support and to know I’m not going mad!! X
The NHS do not prescribe all Vitamins and Minerals - as you may become well and that would never do !!
Are you in a position to have Private Testing done at home to have the correct testing done ? Well used on this Forum by 100's wanting the full story with which to confront their GP. Information in the link below.
If your wife has Fibro then I would suggest she too has the FULL Thyroid Profile tested - TSH - FT4 - FT3 - Anti-bodies - TPO & Tg. Also B12 - Folate - Ferritin - VitD. The companies in the above link will do them all - which the NHS do not. What price health. It is the only way to find out the full story. Fibro can be connected to Low T3 and Low VitD. Medichecks have Special Offers on a Thursday which are posted here on the Forum. You can sign up for Newsletters I believe.
Which vitamins did you buy and how much are you taking of each ?
Ooh I’d heard that fibro can be linked to thyroid but not specifically the T3 element - even made her get a thyroid test via gp which she was told was ‘fine’ (erm I now know that the medical definition of ‘fine’ is rather wide ranging!).
We will definitely both get full profiles done. Once we have them, does it make any difference to how our GPs treat us or do they usually just continue to stick by NHS guidelines?
So ... vitamins ... well I cried at the practice manager (this crying is a new thing and far too regular!) - and now have an extra gp appointment on Monday. Until they tell me they definitely won’t prescribe any vitamins and minerals, I just got some regular ones from Boots (B complex, iron, B12 and C - I know... rubbish but I didn’t want to invest until I knew I had to!)... also wanted some that I could start straight away. Figured they would be better than nothing. Also taking some of my wife’s prescription Vit D3 - 800iu a day, again only til tomorrow when I can hopefully get a prescription (nobody hold their breath😂)
I’ll report back after my gp appointment tomorrow - thanks again
Well that took the wind out of my sails! Went to GP - turns out it was a ‘special’ appointment they had laid on as a result of my letter of complaint! I was in there 40 mins. I went armed with all the info I’ve got from here, useful facts, research papers and links, but didn’t have to say a word! I came away armed with prescriptions for B12 injections, iron, folate and D3. I didn’t even get to share my new knowledge of Japanese B12 ranges . Feeling much more positive that they are now (for the wrong reasons) happy to work with me on this, so fingers crossed the supplements start making a difference. Thanks again for all the info x
Just spotted your post ! - as you had replied to your good self !! Glad you had such a positive appointment.
Keep iron 4 hours away from Thyroid Medication and take each dose with VitC to aid absorption. Do NOT start Folate until you have had your B12 injection. How much VitD ? - GP's usually prescribe too little to make a difference. Re-test Iron in a few weeks as too much can also be a problem.
Did you obtain copies of your results with ranges ? VitD dosing depends on result. Co-factors ? - Magnesium and VitK2-MK7 for VitD.
Hashimotos ? - did you establish whether or not you have it ? If so then going gluten free should help you absorb things better - including all those vitamins and mineral ....
Do not let them re-test B12 whilst having injections - as results will be skewed. They like to sneak it in - tell you your level is too high and to stop injections - MADNESS !
Had first b12 this morning ... then every couple of days for 2 weeks, then 3 monthly. It was at 272.
Vit D - only prescribed 800iu with no loading dose. (My level was 56). My partner had a spare box (she gets it daily for life) so I took the entire box in one go to give me a bit of a head start.
Do you mean I should also be taking vitk2-mk7? (Sorry it’s like a different language to me!) - GP said magnesium was at top end of range (I do have a copy of the results somewhere but not on me at mo). He did say they don’t tend to supplement magnesium, but reiterated I didn’t need it.
Folate was 3.8 and now on 5mcg a day
Ferritin was 19 - I think he said he would retest in 3 months but I can ask for sooner on your advice - maybe every time they test my TSH.
No idea about hashimotos, I don’t think they test enough things to know. I know I should’ve been pushing to find out but until my brain works properly I feel like I can only deal with one issue at a time! Even the appointment yesterday, and the mental preparation for the fight (that didn’t happen) has taken it out of me... ridiculous!
I’ve been on omeprazole for years ... wrongly, I think, as am learning I probably had too little acid, not too much. That’s probably been a big factor in my lack of absorption.
I think I’m hoping that if the vits and minerals are optimised I will then find out if the T4 is working, so I won’t need to faff trying to find/work with alternatives.
If you think that’s not the best route to success then give me a day to recover and I’ll go in for round 2 x
OK - so it would seem you had neurological symptoms if they are injecting every couple of days. If that is the case - the Guidelines for Folate and Cobalamin ( B12 ) Deficiency state that injections should be given until symptoms are no longer present. Try to keep a record of your B12 symptoms returning - and how you feel generally - every other day at least. It is possible you may need injections more than 3 monthly - so having evidence that your symptoms return before the 3 months would be helpful to show your GP - it can be a battle.
800 IU's of VitD will not improve your levels - not enough for a mouse. You need at least 5000 IU's until the end of Spring and then re-test.
Yes you need to be taking VitK2-MK7 - VitD imporves the uptake of calcium from foods and K2 guides the calcium out of the arteries and into your teeth and bones. Too much calcium circulating can cause a build-up in the arteries.
The Magnesium range is VERY narrow and mostly resides in your cells - so the blood test tells you very little. I would continue taking a good magnesium - do some research - they are not all good
Ferritin at 19 needs treating as it should be at least 70 for thyroid hormones to work well. Lots of posts on the forum if you use the Search Facility for Iron. Take each dose with VitC. Were you prescribed Ferrous Fumerate ? How much and how often ?
Are you trying to reduce the PPI - as that will continue to prevent the uptake of nutrients. I believe you need to reduce slowly and try something more natural like Betaine HCL or ACV and I believe Lime Juice works for some ...
Hashimotos is possibly the ROOT CAUSE of all your ills - so that is why it is important to know if you have it or not. Auto-immune issues are not embraced by the NHS as they rarely have a clue what to do. However there is loads we can do for ourselves ..
Low Acid VERY common with Hashimotos and Low Thyroid ....
I think the fact I turned up to my first b12 appointment without remembering to take my prescription of b12 with me is a bit of an indicator of my current brain function! (!)
I have some nerve type pain in arm, fatigue, weakness, breathlessness, blurry eyesight and such brain fog ... my b12 was 663 in 2015 and I do think the low level now is a factor in my current symptoms. I referred GP to a pub med article I’d found about b12, folate and ferritin needing to be higher to aid absorption of T4. He agreed and said to try to get me there as quickly as possible injections of b12 would be best. My complaint was about misdiagnosis me as post menopausal, over two years of illness, weight gain, HRT (!) and failing me. They seem quite keen to be seen to be ‘not failing me’ now. Whether they would’ve agreed to injections without the complaint, we will never know I guess.
So I will buy further vit D and supplement the supplements
Ferrous sulphate tablets ... 2 x 200mg a day (equating to 65mg of ferrous iron)... hope that will do the job? And yes I take with vit C (thanks to your advice!).
Yes - virtually stopped the omeprazole and can’t remember the last time I had any gaviscon either.
Off to order some k2! Thank you so much! I feel like I have my own private consultant - making this journey so much easier! X
I am new to this site but have just stopped taking a mega vit B - as have started getting tingling feet and hands. So will get a proper blood test from this site and go from there. I have Hashimotos and have just turned 60 - am relatively fit but constantly tired. So message is do not randomly take vitamins !
Regarding supplement brands I use Viridian and Thorne for the Basic B Complex. They both do the job very effectively. I prefer Viridian to Thorne as it’s more ‘pure’, however Thorne has the better B complex. I would most like to use Pure Encapsulation for everything, which is why I was so chuffed with Hidden response!
I have heard that you can't overdose on B12 - any excess just gets excreted in the urine. I might be wrong though, so as with anything you read on the internet, check it!
I buy all my supplements on line from Natures Best and have done for years, you can't beat them and they state that all the supplements they sell are manufactures in the UK, so no chance of buying something that isn't true to their word. They also have a telephone service where you can get advice.
Pure Encapsulations has also been my favourite brand of supplements but both PE and Garden of Life have recently been bought by Nestlé so I'm now a bit wary of their products.
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