NDT as supplements, thyca testing: Hello, I have... - Thyroid UK

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NDT as supplements, thyca testing

Mithomp profile image
16 Replies

Hello, I have seen some thyroid glandulars sold as supplements, which can be taken on top of levothyroixine, has anyone had any experience with adding a little NDT on top of their levo?

I have had thyroid cancer, and i would like to try NDT to see if i can feel better, but have some hesitation about trying NDT, due to possible complications with testing-- has anyone had experience with this? I have fatigue and weight issues. I am due for a blood test at the hospital next month, and i have tried discussing t3/NDT with them before, but basically was utterly shot down, they wont deal with either, even said they wouldnt know how to test me if i took anything other than levo, which concerns me, as the cancer markers have to be checked. I am on 150 levo only. If anyone can point me to doctors that could help, that would also be great. i am in london.

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SeasideSusie profile image
SeasideSusieRemembering

Mithomp

A thyroid glandular is not NDT. NDT is made from animal thyroid gland with set amounts of T4 and T3. A glandular doesn't have any guaranteed hormone content so it may or may not help.

Mithomp profile image
Mithomp in reply toSeasideSusie

i understand, i know that is why it can be sold as a supplement, without prescription. I wonder if anyone has experience of this, or any advice?

SlowDragon profile image
SlowDragonAdministrator

As you had Hashimoto's prior to TT for thyroid cancer .....then it's highly likely you may have low vitamin levels

Previous post

healthunlocked.com/thyroidu...

Have you regularly had vitamin D, folate, ferritin and B12 tested?

Can you had latest results and ranges if you have them

What vitamin supplements do you currently take?

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Can you also add your most recent blood test results and ranges for TSH. FT4 and FT3

How much Levothyroxine are you currently taking?

Do you always get same brand of Levothyroxine?

Mithomp profile image
Mithomp in reply toSlowDragon

I do often have low D and iron, I dont have coeliac, but have been gluten free for about 3 years, i haven't reintroduced. I was off dairy for ages, but have it now. I am on 150 levo, my tsh is slightly suppressed, and I will need to check through my records for the last test results. My TPO antibodies have been going down. I take lots of supplements.

SlowDragon profile image
SlowDragonAdministrator in reply toMithomp

Large percentage of us with Hashimoto's benefit from strictly gluten free diet

You probably need to supplement virtually continuously to maintain optimal vitamin levels

You will see thousands of posts on here about importance of good vitamin levels. Ideally testing at least annually, frequently we need to do so via private testing

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, (or NDT or Glandulars) make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Mithomp profile image
Mithomp in reply toSlowDragon

Thank you. Can i ask-- i have my blood test next month at the hospital, at 3pm- i always take my levo early in the morning, would you think i should wait to take the dose until after the blood is drawn? i dont have the option of getting a morning appointment, in this case, unfortunatly.

SlowDragon profile image
SlowDragonAdministrator in reply toMithomp

Yes delay taking Levothyroxine until after test

you could delay the time of dose of Levothyroxine the day before to 3pm......that way you get 24 hours prior to blood test

But your TSH will be low mid afternoon

What vitamin supplements do you currently take

Mithomp profile image
Mithomp in reply toSlowDragon

i take magnesium, d3, K, iron, a multi, b complex, 5htp and ashwaghanda, and i do have a lot of others that i take sometimes, like coq10, fish oil, vitamin a, and i take betaine hcl sometimes with meals.

My TSH is suppressed, as they want to keep it that way after thryoid cancer. I was told by the nurse contact i had after cancer that they will probably keep me on 150 long term, unless my weight changes. From a lot that I have read and heard, many with no thyroid need some T3 or NDT to feel better, but the hospital will not ok this at all, and I was basically brought to tears the last time I even tried to discuss T3 with the doctor I am under.

SlowDragon profile image
SlowDragonAdministrator in reply toMithomp

Remember to stop taking any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results

Biotin is in most vitamin B complex

Mithomp profile image
Mithomp in reply toSlowDragon

thank you! i had heard that, but its good to have the reminder.

SlowDragon profile image
SlowDragonAdministrator in reply toMithomp

Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Come back with new post once you get results

Batty1 profile image
Batty1 in reply toMithomp

I had thyroid cancer 3yrs ago and it’s been a crazy ride with my health issues mounting.

What issues are you currently having?

Mithomp profile image
Mithomp in reply toBatty1

I'm sorry to hear that. My issues started about 5 years before the cancer diagnosis, and I found I have Hashimotos, too, not that that means a thing to the doctors! I have problems with fatigue, heavy periods, numbness in my hand, migraines, too much weight, those are maybe the main ones. Sometimes I have dizzyness also.

Batty1 profile image
Batty1 in reply toMithomp

I suffered years before I was diagnosed with thyroid cancer.

After my thyroidectomy I had migraines and numb hands and feet (that have gotten worse) recently.

I saw a neurologist about 2 yrs ago who told me to take magnesium for my migraines it has worked for me i take them a couple of hours before bed but hasn’t touched my numb feet and hands (not diabetic).

My weight is horrible I went from fit to fat in 3 yrs and I developed psoriatic arthritis Shortly after my surgery.

People who had thyroidectomy in my opinion are throwaway patients because once your labs look good Endos don’t seem to care if your feeling bad. I’m always told it’s not thyroid related it’s something else going on.

Mithomp profile image
Mithomp in reply toBatty1

yes, i'm told its not thyriod related, too, and dismissed by the thryoid doc at the hospital. i hope we can find some way forward, its hard.

jgelliss profile image
jgelliss

NDT is made from "Porcine". I dosed with both T4 and NDT . It worked very well till most of the NDT's I was on where reformulated . I did not do well with the reformulations as many other as well .

I switched to synthetic T3 Cytomel (generic) with my T4 . It's working for me now . I'm not a good converter T4 to T3 and this is a big game changer for me . You might have to lower your T4 dose a bit to make room for either NDT/T3 . Running labs is Very Important as well as journaling your symptoms with each new change . Always ask for copies of your lab results and write on the results the dose you where on at the time . I know it's very helpful for me to adjust accordingly my thyroid dosages .

Best Wishes For A Great Out Come .

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