Struggling

[Nessy50]

Hi I’m on 2 grains of NDT & struggling with bad dizziness & feeling shaky. Also not getting my T4 up & when T3 was last tested it was on the floor too. I’m suspecting adrenals aren’t good either, cortisol is 314 @ 9.30 any help appreciated. Thanks

[SlowDragon Administrator]

Can you add some background information

Eg do you have Hashimoto's, or post RAi or thyroidectomy

What are your most recent vitamin D, folate, ferritin and B12 levels?

Do you take any vitamin supplements, if so what?

[Nessy50]

Thanks for reply, my antibodies aren’t high so I think hypothyroid maybe secondary. Im Coeliac & on B12 injections, folic, Vit D/K2, iron at times but ferritin good so cut back. Been on NDT for nearly 3 years but feel dreadful if take 3 grains so basically stick to 2 but I’ve just gone up to 2 1/2 every other day to see if helps.

[SeasideSusie Remembering in reply to Nessy50]

SlowDragon wont see your post as you haven't replied directly to her, so she wont get notification (click on the blue REPLY directly under a message to reply to that member ) I have tagged her now.

Secondary hypothyroidism is where the pituitary is at fault rather than the thyroid.

You can have primary hypothyroidism which is where there are no raised antibodies. But apparently you can also have Hashi's without raised antibodies.

When on NDT or T3, you have to take the same dose every day because of the T3 element, you can't alternate doses. You could try 2 and 1/4 every day.

[Nessy50 in reply to SeasideSusie]

Ok thanks, yes I’m going to try & get further tests to see why I can’t get levels up. I’ll try that but it’s quite fiddly halving then halving again.

[SeasideSusie Remembering in reply to Nessy50]

Have you got a pill cutter? I successfully cut tiny T3 tablets into quarters. Or a craft knife/stanley knife will do.

[Nessy50 in reply to SeasideSusie]

Yes I have it’s difficult to do evenly in half but I’ll try.

[Peanut31 in reply to Nessy50]

Hi

When I need to half a tablet I use a pill cutter, for a 1/4 tablet I use a craft knife. It gives a clean break.

I’m on NDT too, so the craft knife works well with my NDT.

I got mine from Hobby craft.

Maybe you would benefit from a saliva Cortisol test including DHEA.

Geneva do those and if you go on thyroid U.K. website they offer discounts.

thyroiduk.org/tuk/testing/g...

Best Wishes

Peanut31

[Nessy50 in reply to Peanut31]

I’ve done one years ago & ordered one last year & not done it because if I do & it’s not cheap there’s no help from Dr, same as with my thyroid. I’m paying for lots of tests that should be on NHS plus treatment. I’ll look out for craft knife thanks.

[Peanut31 in reply to Nessy50]

Hi Nessy50.

I completely understand I’m in the same situation, I’m having all the tests, but don’t really understand them without the support of this forum and another thyroid forum.

My GP doesn’t understand and thinks Levothyroxine is the answer.

I’m now self medicating on NDT, and like you I can’t seem to get pass a certain dosage.

I’m currently on 2&1/2 grains, increase by another 1/4 grain, but, felt awful.

I’m back on 2 & 1/2 grains and holding that for 6 weeks then I’m going to do bloods to see where my T3, T4 is.

I know they say bloods aren’t important on NDT, but I would like to see where I am.

I’m still not 100% well and suspect it’s my cortisol as it’s high mid morning and mid afternoon.

Best Wishes

Peanut31

[Nessy50 in reply to Peanut31]

That’s Peanut for your reply. It’s a minefield as you say Drs aren’t clued up & go by TSH & don’t do other tests. I’m diagnosed ME so its all put down to that. I’ve improved my health a lot by B12 injections. Did Dr test your level? Often hypothyroid & B12 deficiency go together. I get copies of results now & don’t accept normal as I did for too long. I hope you start to feel better & find the right dose. X

[SlowDragon Administrator in reply to Nessy50]

Would be very surprised if cause is not Hashimoto's, as you have coeliac (also autoimmune) .

Were antibodies ever high in previous tests? You can have Hashimoto's and never have raised antibodies too

So you need to take exactly same dose of NDT everyday. Otherwise you'll get in right old pickle

Essential to get your vitamins optimal too

With coeliac low vitamins are very very common

Essential to retest regularly, privately if necessary

You might be better off taking a good quality daily vitamin B complex, one with folate in not folic acid. Rather than just folic acid

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you 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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Magnesium is often low when coeliac and important if supplementing vitamin D anyway

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...


betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Vitamin C and bones

healthimpactnews.com/2018/d...

The importance of sunshine

outsideonline.com/2380751/s...

easy-immune-health.com/magn...

naturalnews.com/038286_magn...

Other supplements to consider are vitamin C, zinc, selenium

Soya free diet too including soya lecithin

Only make one change at a time and wait 2-3 weeks to assess results

[Nessy50 in reply to SlowDragon]

Thanks for the help, only upped the NDT from Mon so I’ll change to same amount. Do you think serum cortisol should be 500-600 that’s what I’ve read on Addisons group? I’ve had few sst tests done but some late in morning so no use. I’ve not taken B Complex for years, take B6 in mineral tablet so would need b6 free one. Sometimes I take folate but mostly folic.

[SlowDragon Administrator in reply to Nessy50]

Personally I think if you sort underlying issues, cortisol should improve without supplementing

You could perhaps drop B6 and add vitamin B complex?

Folic acid is not the same as folate for many people

chriskresser.com/folate-vs-...

Definitely want to be extremely cautious about iodine

drknews.com/iodine-and-hash...

[Nessy50 in reply to SlowDragon]

No never had high antibodies, mind you not often tested on NHS. I know auto immunes like company.😰😰