Thyroid test results - not sure what to do now

[healthkiwi]

Some years ago I was discharged from an NHS Endo who had been monitoring me because of goitrous nodules. She knew I was taking NDT - either Thiroyd or Thyroid-S. After several followups with her over a few years we reached a position where she was content with the TSH test results not being too suppressed and I still functioned and was reasonably well. I then moved to a different part of the country, and didn't bother with going through the situation with new GPs, so I hadn't had any blood test for nearly 5 years. After spending this year chopping and changing with various raw thyroid preparations, and becoming mentally low, slow, I started on Metavive II , first 2 then up to 2½ capsules a day. which initially seemed Ok for me. But after a while and as summer ended I found I was getting cold, temperature sometimes down to 35C. I increased to 3 capsules a day. I My sleep deteriorated, I was waking at 3.00a.m., very anxious and panicky. I never slept through the night for many weeks, and was very tired and foggy-brained and miserable. I then read about circadian dosing and started splitting into 3 divided doses, but thought I should get tested.

I had a phone call with a locum GP to get tests booked. I had them done on 29 October. When I got the results I found they didn't test for T3 or Vit D. My TSH was very suppressed

.

By then I had switched to taking the divided doses of Metavive and after a week of doing that, I was sleeping better and had a little more mental clarity and energy. So I spoke with the GP and asked for a retest to get the T3 and Vit D figures.

I was retested last week 18 Nov. I did the test as per your instructions, appointment at 8.45 a.m , didn't take any Metavive that day and was fasting.

I was shocked to see that in the intervening 3 weeks my TSH and T4 had gone down even further. I am again getting foggy-minded, lethargic and get nothing done, and am feeling cold, especially if I do any physical activity. One afternoon my temperature was down to 34.7 C.

I have this week started supplementing Vit D, high strength Vit B complex, high Vit B12 and methylfolate.

Questions:

If my T4 is on low side, does that matter when T3 is midrange?

I am not sure what I should do now - it's getting expensive to take so much Metavive, and I wonder about asking GP for a small amount of Levo.

(And what to say to GP when my TSH is already so suppressed?)

Or should I just try increasing the amount of Metavive for another couple of months, keep supplementing and see how I am?

Here are the test results:

Date Test Result Range

29.10.20 Serum TSH 0.09 [0.30 – 4.20 miu/L]

29.10.20Serum free T4 14.8 [12.00 – 22.00 pmol/L]

29.10.20Serum ferritin 145 [13.00 – 200.00 ug/L]

29.10.20Serum vit B12 387 [197.00 – 771.00 ng/L]

29.10.20Serum folate 11.1 [3.89 – 26.80 ug/L]

18.11.20Serum TSH 0.07 [0.30 – 4.20 miu/L]

18.11.20Serum free T4 12.4 [12.00 – 22.00 pmol/L]

18.11.20Serum free T3 5 [4.00 – 6.80 pmol/L]

18.11.20Combined total vit D2 + D3 lvl 71 [50.00 – 150.00 nmol/L

Thanks for any insight and advice.

[Anthea55]

I'll just comment on the Metavive. I've used it successfully for about 3 years, but recently they have changed the recipe and added nucleotides.

Since the first lockdown I've taken my morning temperature most days. As I was running out of the old Metavive I tried to change over to the new ones gradually - this was in the middle of the summer, so part way into lockdown. I didn't get on well with it (long story) and have now changed over to Tru Thyroid (NDT).

However with new Metavive I put on weight and also noticed that my morning temperature reduced. These are both symptoms of being undermedicated, but due to the nucleotides I found that I couldn't take any more Metavive and had effectively reduced my daily dose from 5 to 3. I use Met-I which is half Met-II, so that's equivalent to a reduction of 1 Metavive II which would explain why I was feeling undermedicated.

Since changing over to Tru Thyroid my morning temperature has started to go up again. I have yet to lose any weight(!) but I think it's stopped going up.

Sorry for the long rant, but in my opinion there's something in the nucleotides which have been added to the Metavives (and the Adrenavives) that doesn't agree with some of us.

I hope that this helps.

[healthkiwi in reply to Anthea55]

Thanks, that's very useful. Is Tru Thyroid an NDT? And is there supply currently? I've been praying for Thai NDTs to come back soon - can you pm me your supplier?

[helvella Administrator in reply to healthkiwi]

Tru Thyroid is an indeterminate product. It appears not to contain anything like as much thyroid hormone as other desiccated thyroid products.

I don't remember reading of anyone who has switched to it, at the same or a similar dose, and found it satisfactory.

[healthkiwi in reply to helvella]

Oh no, just as I've found the order page. Guess I'll keep praying for Sriprasit to get distributing again. But that may well have been altered too....

[Anthea55 in reply to healthkiwi]

I've just looked at some previous posts about Tru Thyroid. Found this one.

healthunlocked.com/thyroidu...

In this SeasideSusie says that there were problems with the first batch but that changes have been made since then.

Tru-thyroid was recommended to me by a naturopath who I contacted when Metavive went wrong for me. Hopefully mine is the updated recipe, but I'll have to see. At any rate it's better for me than new Metavive - almost anything's better than new Metavive. I may just need to use more of it.

What else do we do these days with so many NDTs unavailable?

[healthkiwi in reply to Anthea55]

So many of us, desperate and scrambling for information, surely manufacturers must realise there's a guaranteed global market for a reliable product. Thanks for helping me, I'm going to order it. I am getting so miserable with the situation, better to hope and try.

[Anthea55 in reply to healthkiwi]

Mine took about 2 weeks to arrive by airmail. Hope yours doesn't take too long.

[Rronsha in reply to healthkiwi]

Hi, did you ever have biopsies from your nodules , xxx

[healthkiwi in reply to Rronsha]

Hi, yes, plus ultrasounds. Had fine needle biopsy done twice - 1. soon after referral, then 2. a couple of years later prior to discharge. Opinion was largest nodule was benign, hadn't altered in size/ shape over time.

[Anthea55 in reply to helvella]

Thanks helvella for pointing that out. I appreciate that. See my reply to healthkiwi below.What are our options these days if we need more than levo? The NHS is discouraging use of T3. People are saying that the thai NDTs are unavailable until next year. RLC have withdrawn their products. For any NDT which needs a prescription you need a doctor who is willing to give a prescription and my last one decided that she wasn't prepared to do that any more. Fortunately at that stage I discovered that Dr Peatfield had a clinic near my daughter so I saw him and he recommended Metavive.

All well until the Metavive addition of nucleotides which made me feel that I was being used as a guinea pig. Other people have reported that it made them put on weight.

Do you know anything about Thyro-Active? Mentioned by another member on this forum, but she/he hadn't used it, just received an email about it from a company who she had used for supplements.

[helvella Administrator in reply to Anthea55]

From what I can find, Thyro-Active is entirely hormone-free.

Active Ingredients

Iodine, Magnesium, Zinc, Selenium, Manganese, Vitamin B12

It seems to primarily be a source of iodine.

Have you had a non-loading iodine test?

Taking iodine is not always a good idea. If you really do need it, then be careful. If you don't need it, you could cause yourself problems taking it.

[Anthea55 in reply to helvella]

That's not the one. I'll pm you the supplier.

[Anthea55 in reply to helvella]

Happy to post supplier on here, but I thought it wasn't allowed.

[Angel_of_the_North in reply to Anthea55]

There's only one supplier of Metavive and only one for Tru Thyroid. Diito for Thyrogold (US "version" of Metavive) and Thyrovanz (Aussie "version").

[Anthea55 in reply to Angel_of_the_North]

Thanks, Angel_of_the_North, I hadn't heard of Thyrovanz before.

I'm still not sure I should post suppliers names, but if you google for Thyro-Active and add the word 'bovine' that should lead you to the supplier's web page.

These days we have to be so careful that we don't get scammed. That's why I try to ask if anyone has used whatever product.

[Angel_of_the_North in reply to Anthea55]

You can post the names of suppliers of OTC supplements but not prescription items

[Angel_of_the_North in reply to Anthea55]

Beware of current posting times from Europe. It just took over 14 days to get an order from the Netherlands that usually takes around 3 days.

[Anthea55 in reply to Angel_of_the_North]

Thanks - I'm not surprised - it's Europe and it's Christmas. Apparently you order thyro-active from Switzerland, but they post it from Singapore.

My Tru-thyroid took 2 weeks to arrive by airmail, but it may depend upon how long the queue is for it. I understand that they make it in small batches.

[Anthea55 in reply to Angel_of_the_North]

Just thought I would find out more about Thyro-Active, so I rang their UK number to enquire. Was told that the contact/orders people are in Cyprus and that the product comes from China.