Vit d. W.T.H.: I have waited six weeks for my... - Thyroid UK

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Vit d. W.T.H.

Pinkpeony profile image
34 Replies

I have waited six weeks for my vitamin d results and I am shocked that despite taking 800 iu prescribed by Endo a year ago, my reading is only 5. Even the g.p. is shocked today, says it is a severe deficiency.

My b12 was below range, also ferritin, .

What I need to know is, why despite an excellent diet, am I so deficient? Where is it going?

I will have the dubious pleasure of an Endoscopy in the next couple of weeks:·( and am completely flummoxed!

Anyone tell me what I am doing wrong?

PP

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Pinkpeony
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34 Replies
rosetrees profile image
rosetrees

My guess, for what it's worth, is that your gut can't absorb Vit D for some reason. Try using an oral spray under your tongue and see if it is better absorbed that way.

Marz profile image
Marz in reply torosetrees

PP had a hemi-colectomy 11 years ago - so no Terminal Ileum - and nowhere for the B12 to be absorbed. Me too - done over 40 years ago - and only just started injections - yikes :-) Mentioned in an earlier post - see below :-)

rosetrees profile image
rosetrees in reply toMarz

Woops - I should have spotted that. Sounds like oral sprays might be worth trying then.

Pinkpeony profile image
Pinkpeony in reply torosetrees

Thanks rosetrees .

Have had b12 booster injections and am on 420 a day ferrous fumarate.

GP today has put me on 20,000u colecalciferol .

Not sure what the endoscopy will show.

PP

Clutter profile image
Clutter in reply toPinkpeony

PP, that's not enough. My vitD was <10 and I was prescribed a loading dose of 40,000iu daily x 7 followed by 2,000iu daily for 8 weeks. Retested and was 100. I don't think I held on to it well because 6 weeks later I had hip and knee joint pain again. I've been taking 5,000iu since and will retest in 2/3 months.

If you're not absorbing via the gut you may need booster injections and when you are stored up can use sprays for maintenance.

Pinkpeony profile image
Pinkpeony in reply toClutter

Thanks Clutter.

I only have to take 2 tabs a week so that is 40,000.

PP

Clutter profile image
Clutter in reply toPinkpeony

PP, you need a loading dose first to build up your levels. 40,000 a week is a maintenance dose.

humanbean profile image
humanbean

800 iU is a really mean dose! My levels weren't outrageously bad but they did drop while I was taking 1000 iU per day. I've been taking 3000 iU in recent months and my levels have started to rise now, for the first time. But I was never seriously deficient to start with, so I don't need to take loads per day.

Vitamin D is a fat soluble vitamin. How much fat do you eat?

humanbean profile image
humanbean in reply tohumanbean

I should also have mentioned :

If your B12 is below the range is your doctor arranging lots of B12 injections for you? Testing you for pernicious anaemia?

And is he/she considering iron infusions to improve your ferritin and iron levels?

Pinkpeony profile image
Pinkpeony in reply tohumanbean

Yes to b12 jabs, no to iron infusions, just 20,000 u of colecalciferol.

PP

Spareribs profile image
Spareribs in reply toPinkpeony

Wow pp 5 is low - good you're getting 'just' a hefty loading dose, temporary I hope - you may find things hurt worse to start with, well I did, esp shins.

I just lost my post harping on (as I do) about related vits/mins - like magnesium, K2, Omega 3 (vit F!) and Vit A - vital minerals all work together - please check Vit D regularly and keep an eye on that calcium too (parathyroids may be involved).

B complex with B12 (& folate), Vit C with iron etc

To be honest I was shocked I had low vit D too - I've always loved the sun! (and oily fish!) Simple deficiencies oft' seem overlooked in favour of <syndrome with a fancy name and designated drug>

So... this Autumn I shall be trying various sprays - B12 (fruity) Vit D (pepperminty) and multivits (dunno flavour) as I just hate taking pills (Fast show style). J :D

for Vits - worth a look at Linus Pauling's work (various nobel prizes)

lpi.oregonstate.edu/infocen...

sue11 profile image
sue11 in reply toSpareribs

Hi,could you educate me on what supplements should thyroid/hashimoto person take,sence 2002,was diagnosed with under active thyroid,until l had my left thyroid removed 4 yrs another 2 yrs ago through keyhole surgery,they found a lump st the back of my tounge ,down my throat.

As you do have an after opp appointment,that's where l heard him say in his hand voice recorder,this women with hashimotos,u till then never heard of hashimoto before,quite a shock,as was never addressed to me.

So could you please tell me what blood test should l ask for,as due soon New bloods to be done,also as never ever up to now ,even never been advices to take supplements.

I take 100mg of levoxine(sorry can't spell it)and folate tablet,

Thank you

Sue11

Pinkpeony profile image
Pinkpeony in reply tosue11

Hello sue11

I am a relative newcomer to this site and wouldn't presume to give you advice.I don't have the knowledge.

I suggest you put your post on the site and you will get all the advice you need.

These guys have rescued me from feeling that nothing was going to help me.

The advice to ask doc for b12, vit D, ferritin has literally "saved my bacon " !

Do it now!

I wish you all the best

PP

Spareribs profile image
Spareribs in reply tosue11

Hi sue11

Just saw your pm, I don't really give advice as such, just suggestions as a fellow sufferer.

To get the full picture your doctor could test TSH, FreeT4, FreeT3, TPO antibodies (high indicates hashimotos but the treatment is the same anyway). Reverse T3 rarely gets done, but can show that you are not converting T4 (levo) to T3 well - but vitamins and minerals are essential for conversion too.

The usual 5 to check are irons, ferritin, folate & B12 and vitamin D. These are often low with thyroid trouble, I see you are already taking folate, have you had a B12 test too? Supplements esp iron should be taken 4 hours away from your Levo, which should only be taken with water. I take Vit D3, B12 and B complex, & occasional multivits. Also a few brazil nuts for selenium and I avoid bread as gluten can provoke (not the right word) antibodies. (Magnesium, omega 3 and vit K2 also help - I have epsom baths, eat oily fish and brie - sometimes!)

Hope this helps you can find more info on Vitamins on the main TUK site here. thyroiduk.org.uk/tuk/treatm...

J :D

Pinkpeony profile image
Pinkpeony in reply toSpareribs

Sparerib, just a query after my post 're vit b. Where do you get these sprays ,are they on line?

Cheers Mary

Spareribs profile image
Spareribs in reply toPinkpeony

PP ooh sorry didn't see this - I got them from Bodykind but there's other places (25% off at the mo!) bodykind.com/

:)

Pinkpeony profile image
Pinkpeony in reply toSpareribs

Hi Sparerib,

Thanks for that. I am on 40,000 tabs a week for seven weeks from doc. What strength spray would you suggest?

Cheers Mary

Spareribs profile image
Spareribs in reply toPinkpeony

I supplement Vit D3 from late Sept to March with drops 4000iu but I'm trying the 3000iu D3 spray and the B12 spray as I suspect it is low (I stupidly took a few supplements before testing B12) 4 sprays is 1200ug

bodykind.com/product/brand/...

(I have nothing to do with bodykind, just one of many suppliers)

It will be interesting to see what level the loading dose gives you after 7 weeks & how you feel! My levels are over 100 and I feel so much better - however there is a rare possibility of VitD overdose so we must have regular tests (vit D and Calcium)

Best wishes J :D

Pinkpeony profile image
Pinkpeony in reply toSpareribs

Thank you

Mary

Pinkpeony profile image
Pinkpeony in reply tohumanbean

Hi humanbean, I eat a reasonable amount of fat , butter etc roasted belly pork on Sunday.

Endo gave me 800iu on a whim as unfortunately vitamin deficiency hadn't been considered.

Cheers PP

Marz profile image
Marz

healthunlocked.com/thyroidu....

Our discussion a few days ago :-) As you do not have a Terminal Ileum the B12 will not be absorbed. So however good your diet you will need lifelong injections.....have a read through the link above of your earlier post.

Pinkpeony profile image
Pinkpeony in reply toMarz

Hi Mars, have been told injections will be for life!

PP

helvella profile image
helvellaAdministrator

I suggest that you read the booklet linked from this post:

healthunlocked.com/thyroidu....

It is free and it is quite an easy read - whilst being based on good research.

Pinkpeony profile image
Pinkpeony in reply tohelvella

Thank you Helvella I will read that.

PP

Angel_of_the_North profile image
Angel_of_the_North

800iu is about enough for a cat. Not to get a decent level in an adult who is deficient. You need to buy the stuff yourself and take a decent dose - probably 10000 to 20000 iu to start with. I use one where the vit D3 is in an oil base. Pills just don't really work.

Pinkpeony profile image
Pinkpeony in reply toAngel_of_the_North

Hi Angel.

GP has started me on 20,000 iu capsules today.

I wonder why even being on 800iu for the last year seems to have vanished.

Best Wishes P P

puncturedbicycle profile image
puncturedbicycle

I would second all the above suggestions. You will need a loading dose. My test results were 10 and I took a massive loading dose and it was still hard work getting my levels up. Make sure the gp keeps an eye on it (though it is probably good that he got a shock as they are so often very blasé about it).

I know it has been said above that d is a fat-soluble vitamin, but just to be clear, you need to actually take it with fat, like maybe your evening meal if that includes some meat or cheese (or if you have buttered toast and eggs for breakfast it would be good to take it with breakfast if you see what I mean).

It's a real pain in the bum to get it back to normal but you may find it makes a difference to you. I found the pain in the back of my hands went after I started on a good daily dose. Good luck!

Pinkpeony profile image
Pinkpeony

Thank you P B. Doc started me on colecalciferol 20,000 capsules today. Thanks for the tip on taking it with fat.

Cheers PP

Spareribs profile image
Spareribs in reply toPinkpeony

or milk :D

Pinkpeony profile image
Pinkpeony in reply toSpareribs

HaHa Sparerib Thanks

PP

Spareribs profile image
Spareribs in reply toPinkpeony

Mary, it's just the easiest thing first thing ...

(well, I'm trying a spray now, apparently with coconut & peppermint oil in) :)

I find taking Vit3 later keeps me awake nightime...

Pinkpeony profile image
Pinkpeony in reply toSpareribs

I take my Levothyroxine first thing. Will it interfere with that?

PP

Spareribs profile image
Spareribs in reply toPinkpeony

Yes, milk will interfere.

I take NDT before bed then T3 when I wake about 5 for a wee, been trialling this for a few months now...

but really I call 8am 'first thing' (even that's too early at weekends!)

pp it's often posted to take meds <at least>1 hour away from breakfast/protein, 4 hours away from iron supplements etc.

I'm not very good at keeping to times either - but I def notice when I don't! J x

Pinkpeony profile image
Pinkpeony in reply toSpareribs

Thanks again.

Mary

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