Supplements Advice please ☺

[janey1234]

Hello

I have been getting some wonderful advice and support from the Thyroid UK (TUK) group and I am now at the stage where I need to take control of my health in the form of self-supplementing. TUK have recommended I post here to get the correct info on which supplements to take, how much to take, when and for how long. I have posted several times in the Thyroid group so I don't know how much history I need to repost, but here is a summary...

Diagnosed Hypothyroid March 2016. Have been having blood tests every 2-3 month to check on my thyroid levels and have been slowly increasing my Levo (now on 125mcg). TUK suggested the tests below.

I'm not on any medication apart from Levo and here are the results that I understand I need to supplement.

B12 is 295 (211-911) Needs to be nearer 1000?

Folate 9.45 (>5.38) Needsto be over 12?

Ferritin 67.3 (10-291) Needs to be mid range, eg nearer 140?

TPO antibodies 1175 (0.0-60.0) I have gone gluten free

Somebody mentioned Vit C to take with Ferritin and Selenium that can help reduce antibodies.

At the moment I take my Levo between 6-7am, have breakfast at 8am, lunch 12.30pm and tea about 6pm so if there is guidance as to the best time to take each supplement in my day, that too would be helpful.

I understand that I should leave a 7-10 days before starting a new supplement so advice on which one/s to start with would also be helpful.

I have seen a GP (see last post on TUK) which is why I am here today, trying to make a new start.

Thank you.

[Gambit62 Administrator]

The ranges for B12 are based on statistical averages so most people will be okay at 295. However significant numbers of people won't be - the tests for B12 deficiency aren't enough on their own so you need to look at the symptoms as well.

This is a link to the symptoms of B12 deficiency but there is a significant overlap with symptoms of other conditions including thyroid and Vit D and it is quite possible for more than one thing to be going on which makes unpicking what is actually happening quite difficult.

pernicious-anaemia-society....

Many GPs think that if your B12 is low then you will have signs of macrocytosis - blood cells rounder and larger than normal which will make them less efficient at picking up oxygen in your lungs and taking it to cells where it is needed. However, B12 is used for a lot more than making healthy red blood cells and significant numbers of people will develop symptoms caused by other uses before they develop any signs of anaemia.

If possible you need to work with your GP on what supplements might be useful. It would be best not to supplement B12 if you think there is a deficiency until you actually have a diagnosis as getting a diagnosis after supplementation gets even more difficult.

The advice you have had on the TUK board is again based on statistical averages - eg the B12 level is, I believe, an average based on reports from members of the PA society as to levels where they felt okay - but there will be variation. Personally, having had shots - I now need to keep my levels much higher to feel okay. If we want GPs to start treating us as individuals rather than statistical averages then we also need to do the same.

Sorry that this doesn't give you the precise answers you are looking for but the truth is that we are all individuals and what is right for one person isn't necessarily right for another.

[janey1234 in reply to Gambit62]

Thank you for your reply. Alas my GP has not helped hence my post here. Thank you anyway.

[Sleepybunny]

From personal experience, I would say that taking B12 supplements makes it virtually impossible to get a diagnosis of B12 deficiency.

It is possible to be severely B12 deficient with b12 blood levels that are normal range. I was very symptomatic with levels similar to yours.

bmj.com/content/349/bmj.g5226

See 5th summary point in link above.

Have you looked at lists of B12 deficiency symptoms? In the UK, my understanding is that people who are symptomatic for b12 deficiency should be treated even if their B12 blood levels are normal range.

pernicious-anaemia-society.... click on Symptoms Checklist

b12deficiency.info/signs-an...

b12deficiency.info/what-to-...

Perhaps you can discuss having an IFA (intrinsic factor antibody) test with GP which can help to diagnose PA (Pernicious Anaemia). There are quite a few on this forum who have both thryoid disease and PA or another cause of B12 deficiency.

I'd recommend reading "BCSH Cobalamin and Folate Guidelines".

Page 29 is a diagnosis flowchart that shows the recommended process a doctor should follow with someone they suspect might be B12 deficient, including when to order an IFA test.

Useful b12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could It Be b12"

[janey1234 in reply to Sleepybunny]

Thank you for your reply. I've been through all of the symptoms and presented those I thought I might have to my GP. He insisted that all my problems are thyroid related hence my decision to help myself and that my B12 result proved I didn't have a problem as I was clearly absorbing.

[fbirder]

I'm not quite sure why you believe that you need any supplements at all. Your blood results all look OK. Do you have any symptoms that can't be explained by your thyroid problem?

If would suggest a multi-B vitamin supplement that provides 100% of the recommended daily amount.

[janey1234 in reply to fbirder]

I was going on the advice of TUK and associated reading lists. I'm just trying to help myself to feel better

[Gambit62 Administrator in reply to janey1234]

you need to go back and look at symptoms - links already provided - mark off on the list everything that applies - that will give you some idea of whether or not you really might be deficient in B12 at the level you have. Folate and ferritin have less of a variance from normal range in terms of individual responses than B12 and do look at the moment as if they should be okay. You can't overdose on folate - though it can have some adverse side-effects - one of which is masking the macrocytosis that many medics regard as a defining characteristic of B12 deficiency. You can overdose on iron.

This document gives recommendations for save levels of various mineral and vitamin supplementation in europe.

efsa.europa.eu/sites/defaul...

it also provides a list of the potential risks of supplementing so at least any decision you make will be informed based on recommendations reviewed against available scientific evidence. The advice is periodically reviewed so it is worth checking for recent reviews on the same site.

Although you cannot overdose on B12 I would personally be wary of going for very high doses of B12 to correct a problem that may not exist as people can react to high levels of B12 in their blood in various ways that effectively shut down the amount of B12 that is available at the cell level creating a functional deficiency and potentially trapping themselves in the need for really high doses. That isn't coming from scientific studies but it is coming from personal and family experience. I was given B12 shots to correct low B12 in December 2012 - things actually started to get a lot worse after that - I would notice an improvement after a shot but it would be very short lived - less than 24 hours so now I have to supplement very heavily. My mother was put on B12 a few years later and has had the same reaction. My aunt and my brother have not had formal diagnoses but had significant symptoms that weren't really explanable by other conditions. Both use a nasal spray in much lower doses than I need, and much lower doses than they would have received from a shot, which leads me to speculate that lower doses give them what they need without triggering an adverse reaction as has been the case with myself and my mother - wish I could fund a study into it but don't have the funds.. It actually pains me to see high doses of B12 being continually recommended and high levels in serum on TUK.

Please look through the pinned posts on this forum - the article from the B12 institute is particularly informative in relation to the potential dangers of supplementing and as to which forms are best for supplementation.

PS very sympathetic and understand about GP as my experience has been similar but please bear in mind that even though B12 is a vitamin - it can interact with some medications, and also that there is a huge overlap with symptoms of other conditions.

[janey1234 in reply to Gambit62]

Thank you Gambit62