Transitioning from Levothyroxine to NDT

[lesleyoc]

I am73 years old and suffer from Hashimoto's. Am currently on 100mg Levothyroxine but am just ticking over with little energy and worrying breathlessness. I want to try NDT but cannot seem to buy it without a prescription. Doctor won't prescribe it and private doctor is likely to stretch my state pension too far. Have heard you can get Metavive but cannot believe it could be as good as NDT. Does anyone have experience of Metavive. Is it the same as NDT but simply weaker? Any advice would be welcome.

[SeasideSusie Remembering]

lesleyoc

Metavive is a thyroid glandular with no declared hormone content. Some members do well on it, some haven't. Hopefully they will share their experiences with you but at the end of the day it's very likely down to give it a try and see if it works for you.

However, before you decide whether to make the change, why not share your current test results here on the forum and members may be able to give you suggestions to help. It could be as simple as you are not on enough Levothyroxine, or you may not be converting T4 to T3 well enough. If your conversion is poor that could be down to low nutrient levels (fatigue and breathlessness could be due to low ferritin/iron).

Test results we need to see, along with their reference ranges as these vary from lab to lab:

TSH

FT4

FT3

Thyroid antibodies

Vit D (please include unit of measurement)

B12 (please include unit of measurement)

Folate

Ferritin

If you can't get all these done with your GP then it's possible to do them with one of our recommended labs by a fingerprick test or, for extra cost, venous blood draw:

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

[SlowDragon Administrator]

When on any replacement thyroid hormones we always need GOOD vitamin levels

Extremely common with Hashimoto’s and as we get older for vitamin levels to be too low

Before considering adding T3 or changing to NDT it’s extremely important to get FULL thyroid and vitamin testing done

Usually that means private testing

What vitamin supplements are you currently taking?

As you have Hashimoto’s are you on strictly gluten free diet?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

NHS typically only test TSH

Ask GP to test vitamin levels

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)

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

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[lesleyoc in reply to SlowDragon]

Thank you for your comments. 7th January 2021 – blood test at NHS doctors

Blood test by my doctor – TSH level 1.48 mu/L – note: this test was taken mid-afternoon.

TEST BY MEDICHECK – 8TH JANUARY 2021

CRP HS (Inflammation) <0-5> = 1.83

Iron (Ferritin) <13-150>= 135

Folate-serum <3.89-19.45> = 12.19

Vitamin B12-Active <37.5-187.5 = 87.1

Vitamin D <50-175> = 43.6 (outside normal range)

TSH <0.27-4.2> = 4.09

Free T3 <3.1-6.8> = 4.09

Free thyroxine <12-22> = 15.3

Thyroglubulin antibodies <0-115> = 359 (outside normal range)

Thyroid peroxidase antibodies <0-34> = 263 (outside normal range)

Medication

Was on 50mg Levothyroxine then following tests above and request by me, dose was increased to 100mg on 23rd January 2021.

I am also taking following supplements –

1 Cod liver oil 1000mg/1 Vitamin B complex/1 vitamin E 400IU/1 vitamin D 5000IU/1 vitamin B1 100mg /1 vitamin C 500mg/1 selenium 200mcg/1 magnesium citrate 700mg/1 zinc 100mg

Diet

Have started a gluten free diet about 2 weeks ago.

Do you think I would benefit from switching to MetaviveIII? I am just very concerned about my breathlessness which I suspect is caused by the auto-immune. Am awaiting tests on lung function at hospital but due to Covid -when??

Any advise gratefully received.

[SlowDragon Administrator in reply to lesleyoc]

Vitamin D <50-175> = 43.6 (outside normal range)

TSH <0.27-4.2> = 4.09

Free T3 <3.1-6.8> = 4.09

Free thyroxine <12-22> = 15.3

Thyroglubulin antibodies <0-115> = 359 (outside normal range)

Thyroid peroxidase antibodies <0-34> = 263 (outside normal range)

These results show you were under medicated

Usually dose levothyroxine is increased in 25mcg steps. Increasing by 50mcg can be difficult to tolerate

Which brand of levothyroxine are you currently taking

Is this same brand of levothyroxine as previously

Bloods should be retested 6-8 weeks after increase to 100mcg

IMPORTANT you must stop vitamin B complex or any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

When did breathlessness start?

Before or after dose increase in levothyroxine

[SlowDragon Administrator in reply to lesleyoc]

How long have you been taking 5000iu vitamin D

vitamin D is obviously still too low

[SlowDragon Administrator in reply to lesleyoc]

Are you sure both TSH and Ft3 results were identical?

Ft4 was only 33% through range

Most people when adequately treated will have Ft3 at least 60% through range and Ft4 at least 60-80% through range

[lesleyoc in reply to SlowDragon]

Thank you for all your comments.1. I had made a mistake typing the Medicheck results. The TSH should have read 2.77 and the free T3 was 4.09. Are they now about right?

2. I was on the Levo brand, but for some reason the pack I collected last week is Accord brand. However, I seem to be feeling fine on this brand.

3. After I got my Medicheck results in Jan I started taking 2 x 5000 of the vit D tablets as the results said I was low. However, I went back to the 5000 about a month ago. Not really sure how much to take and don't want to overdose on them.

4. You said I should have blood test 6-8 weeks after increase in dose. Doctor never asked to speak to me after he sanctioned increase, but perhaps they will contact me soon to take another test.

5. The breathlessness has been going slowly downhill for at least a couple of years, probably around the time I started getting the beginnings of arthritis. I have never been great at going up hills and I did used to smoke, but gave up 2000. So far I seem to be keeping the arthritis at bay by taking daily cod liver oil and making sure I go for at least half hour walk a day. The breathlessness is very worrying as I can get breathless just nipping quickly into the kitchen to put the kettle on, or having to talk on the phone (which I am never relaxed with). I talked to the doctor about this months ago and he didn't pick up on the possibility that it was related to the auto-immune problem. He asked for hospital lung tests but although I am on the waiting list, covid has seriously delayed so am just waiting. I am sure the breathlessness is damaging my health badly and may ,lead to heart problems (they run in the family on my mother's side).

6. I have read that my hashimotos is more than likely to suggest I should not eat gluten so two weeks ago started a gluten free regime. Probably too soon to tell if it helps, but will keep on.

I think that's about all. I just want to find a way back to improved health and better breathing and energy. Think maybe NDT may help but am wary of going it alone and due to the fact that our doctors on the island will not prescribe it, would probably have to take Metavive. Is this OK? Otherwise will have to save up and get a private prescription. It's not easy is it when you are unwell and just on a government pension! The treatment we get here is so bound up in politics, but around the world thyroid imbalances are rife due to pollution and so many things we do wrong in this current age. Sorry to waffle on.

Thanks again, Lesley

[helvella Administrator Thyroid UK in reply to lesleyoc]

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[lesleyoc]

7th January 2021 – blood test at NHS doctors

Blood test by my doctor – TSH level 1.48 mu/L – note: this test was taken mid-afternoon.

TEST BY MEDICHECK – 8TH JANUARY 2021

CRP HS (Inflammation) <0-5> = 1.83

Iron (Ferritin) <13-150>= 135

Folate-serum <3.89-19.45> = 12.19

Vitamin B12-Active <37.5-187.5 = 87.1

Vitamin D <50-175> = 43.6 (outside normal range)

TSH <0.27-4.2> = 4.09

Free T3 <3.1-6.8> = 4.09

Free thyroxine <12-22> = 15.3

Thyroglubulin antibodies <0-115> = 359 (outside normal range)

Thyroid peroxidase antibodies <0-34> = 263 (outside normal range)

Medication

Was on 50mg Levothyroxine then following tests above and request by me, dose was increased to 100mg on 23rd January 2021.

I am also taking following supplements –

1 Cod liver oil 1000mg/1 Vitamin B complex/1 vitamin E 400IU/1 vitamin D 5000IU/1 vitamin B1 100mg /1 vitamin C 500mg/1 selenium 200mcg/1 magnesium citrate 700mg/1 zinc 100mg

[greygoose]

TSH <0.27-4.2> = 4.09

Free T3 <3.1-6.8> = 4.09

26.76%

Free thyroxine <12-22> = 15.3 33.00%

Levo isn't doing much for you because you're not taking enough of it. Your FT4 is only 33% through the range. Most hypos need it up near 60 - 80%. You may have had a 25 mcg increase since then, but doubtful that would be enough to take you up where you need to be.

On the other hand, your conversion seems to be pretty good. People who feel better on NDT are often people who don't convert well, so the added T3 in the NDT is just what they need. You would probably do just as well if you only had higher levels of both FT4 and FT3, which you would probably achieve on 125 mcg levo.

[lesleyoc in reply to greygoose]

Thank you for your response. I did make a typing error when sending my results in that my TSH was 2.77, not 4.09. It's probably a bit too soon to ask my doctor to increase my Levo to 125mg but shall certainly do so when I can. Thanks

[greygoose in reply to lesleyoc]

Doesn't make that much difference, you're still under-medicated according to your FT3.

[Hidden]

We are all different, but I need 200 mcg of levo daily to feel fine. That puts my FT4 levels high in range and my FT3 levels ca 60% through range. I´ve tried adding T3 but added up with hyper symptoms. I also needed to work on my vitamin and mineral levels many of which used to be low. In order to be symptom-free, I need optimal vitamin and mineral levels plus a rather high dose of levo. Luckily, my doctor does not mind prescribing it as he says the most important thing is how I feel. My TSH has been below range for years but my doctor is not worried about that as my FTs are in range.Not everyone needs T3 or NDT, but some people (like me) benefit from more T4. Since your FT4 levels are low, it´s likely you´d feel better if you were allowed to increase levo until you get symptom-relief.

[lesleyoc in reply to Hidden]

Thanks so much for sharing your experience. You may be right. I have started taking vitamin and mineral supplements so I think that will help. Next time I speak to the doctor I shall ask to try a higher dose of Levo.Best wishes

Lesley

[Starsw]

Hi lesleyoc

This is what i posted about Metavive (l and ll the porcine one) but i was already on NDT so not changing from levo on which i was for 11 years and feeling very unwell with.

For 5 years i was on Thyroid S and doing good tried Metavive for around 3 Months and also my numbers were ok.. Ish i felt terrible and had to stop because of thyroiditis triggered i beleive by the Nucleotides in Metavive unlikely to be a coincidence as it stopped within a few days when i stopped Metavive.

This is my post healthunlocked.com/thyroidu......

Hope things will improve for you try also to listen to what your body is telling you.

[lesleyoc in reply to Starsw]

Thank you for this information. I still haven't definitely decided to use Metavive, but it's helpful to know that it does not agree with everyone.