Lost - hypo thyroid - B12 supplement???

[Karen3804]

I am a mum age 36, diagnosed hypothyroid age 16. it has been continually monitored through out with increased levo requirements - up to 300mg daily after birth of my second daughter. and weighing in in excess of 17st. 4 years ago I managed to loose nearly 7st and I was healthy full of energy, running 3 5km runs a week and chasing after my young kids. Since I have restarted career and over last year I have lumped on 4 st. doctor re tested my thyroid and told my I was extremely OVER active and slashed my level in half to 150mg daily. I am bloated, piling on weight, my skin is so dry its painful, I am exhausted - regularly have to go and have a nap in car mid afternoon as I just cant continue and for the first time in my life I am depressed. - actually really low mood I feel like I am being pushed down from above and cannot raise my self back up. My doctor will not see my until 10th Feb to review further. All research I can see is linking it all back to thyroid but wondering is anyone uses B12 - symptoms are very similar if I could boost that might it help me survive until I can see doctor again?

[shaws Administrator]

Welcome to our forum and the first thing to do before the members will be able to help is to get a copy of your most recent blood test results for your thyroid hormones with the ranges.

If you've not had a recent one, make the every earliest appoint, fasting (you can drink water), Also allow 24 hours gap between your last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as that's all doctors diagnose which might prevent us getting better with relief of all symptoms.

If getting a new test ask for a Full Thyroid Function Test i.e. TSH, T4, T3, Free T4 and Free T3 and antibodies. Also B12, Vit D, iron, ferritin and folate.

Get a print-out and post results, with the ranges (these are important) as labs differ.

If doctor wont do all of the thyroid tests you can get a private one from our recommended labs.

We have to read, learn and get ourselves better due to the guidelines in force in present.

[SlowDragon Administrator]

Don't try taking any supplements before being tested, especially B12 (it takes months for B12 to get back to pre-supplement level)

[shaws Administrator]

Can you get a copy of your blood test results with the ranges and put up a new post with the results. Also:-

Get a proper blood test from the doctor re B12. Even they don't know how serious a deficiency can be. We must have a proper B12 test. So ask for a bood test.

This is a video I've posted before.

youtube.com/watch?v=BvEizyp...(Not working as expected?)

We need an optimum of thyroid hormones to relieve our symptoms as well but many doctors stop short as our TSH should be 1 or lower.

[Gambit62 in reply to shaws]

There isn't actually a good test for B12 deficiency

- there are four tests (serum B12, holo/active B12, MMA and homocysteine) that can be used in combination to clarify where a B12 deficiency is suspected but they all need to be interpreted in context.

the last two tests - MMA and homocysteine are looking at nasties that will build up if you don't have enough B12 available at the cell level. However, they can also be raised by other factors - eg folate in the case of homocysteine - and liver and kidney function in the case of MMA - so need to be looked at in that context.

the context includes

a) clinical evaluation of symptoms.

pernicious-anaemia-society....

to make life more difficult the symptoms of B12 deficiency overlap with a number of other conditions - including diabetes and thyroid - and to add to the complication it is more than possible for 2 or more conditions to be present at the same time.

b) full blood count but your GP needs to be aware that whilst macrocytosis (enlarged red blood cells) is an effect of a B12 deficiency (and a folate deficiency) it isn't necessarily among the first symptoms to materialise and isn't present in at least 30% of people who have a B12 deficiency

macrocytosis can also be masked if folate levels are high.

[shaws Administrator in reply to Gambit62]

What I dislike is that when people reach a certain age that they aren't automatically given a blood test yearly particularly when they show certain signs of mental deterioration which may be slight initially. The fact is that doctors believe if it is anywhere 'in range' is fine when new research has shown that as a preventative, B12 should be around 1,000.

I even know of someone who had P.A and had B12 injections regularly was told after years of B12 injections that she needed no more as her B12 was fine. I don't have to spell out the consequences of that decision despite many visits to the surgery thereafter with increasing clinical symptoms.

[Gambit62 in reply to shaws]

B12 screening is now part of the testing for cognitive problems - however that doesn't resolve the fact that most medics - not just GPs don't understand the limitations of the B12 serum test.

Given the problems with B12 serum (the usual measure) as a guide to deficiency I'm not sure that pushing regular testing is really going to help - the normal range is set in such a way that just going by test scores is going to pick up something like 5-10% of people who aren't actually suffering a deficiency as falling in to the deficient range but, more worrying, is going to miss something like 25-30% of people who are suffering a deficiency. What is really needed is more awareness of B12 deficiency and its consequences, and more understanding of the problems with the serum B12 test itself.

personally I am not a fan of saying that B12 levels need to be 1000 - partly because it doesn't mention units and there are two sets of units that are generally used for measuring B12 in serum but mainly because its an argument from averages to everyone that is incorrect in terms of logic alone. Peoples responses to B12 levels in serum are very individual and very variable making generalisations at best difficult and at worst misleading.

Personally (having been treated for a B12 absorption problem with B12 shots) I now need my levels to be kept much higher than 2000 which means that there are going to be people out there who don't need levels anywhere near 1000 - just to illustrate the problems with generalising.

Unfortunately there are large numbers of medics out there who know nothing about B12 and how it works and is used by the body. The guidelines are problematic and the PAS is working on both educating medics and improving the clarity and quality of standards for treatment and diagnosis of B12 problems. I am sure that TUK is doing the same in relation to thyroid conditions.

If you become aware of any other victims of poor medical practice who have their treatment withdrawn because their levels are 'okay' then please do point them in the direction of the PAS

pernicious-anaemia-society....

they are able to support members in educating GPs etc in a way a forum like this can't.

[shaws Administrator in reply to Gambit62]

Thanks. Good information and helpful The person I mentioned above was my Mother and I wouldn't wish it on anyone how she suffered and the whole family.

[Gambit62 in reply to shaws]

sorry to hear that - if you are still having problems then would really recommend joining the PAS to get their support - this blog by the chair from a few months explains a bit how they work to help individuals

martynhooper.com/2016/09/23...

totally understand the problems with getting GPs to listen - been through it myself

[shaws Administrator in reply to Gambit62]

She died quite a number of years ago now and Martyn Hooper has done a great job with his site and info and fully deserved his New Year award.

When my mother was taken into hospital (I lived far away) I phoned the ward and they said they were investigating and I said to the nurse my mother 'had' P.A. and she said once you have it you always have (which is right of course) but when you believed doctors knew best that's when the shock hits.

[Gambit62 in reply to shaws]

sorry about that - not easy - I suspect that part of my mothers cognitive problems are B12 related - was on metformin for many years ... as was my grandfather who died of vascular dementia but not easy to prove anything after such a long time ... and I only became aware of B12 a few years ago myself which would have been too late in relation to my mother

[Tile in reply to shaws]

My B12 is 1300 which keeps in range for MMA. 140 Range 70 to 230. Never took inj SUBLINGUALS WORK just as well. If you stop b12 inj you still need to supplement. Read up.

[shaws Administrator in reply to Tile]

There was no sublingual tablets when my mother died, nor internet so we took the doctor's word as knowledge.