Update/Advice please: Hi there, due to being an... - Thyroid UK

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Update/Advice please

Mandy2007
Mandy2007

Hi there, due to being an ineffective converter of T4/T3 (backed up by my positive DIO2 result) and following advice from a private Dr, I started on Metavive around 5 weeks ago. Introduced it gradually, 15mg for a week, then 15mg twice a day for a week and got up to 30mg in the morning and 15mg in the afternoon. I had a blood test done through Blue Horizon which included Thyroid. Unfortunately it only included FT4 & TSH amongst lots of other things. It came back as:

TSH 0.010 (0.27-4.20) Quite normal for me

FT4 28.15 (12-22)

Ferritin 132.5 (13-150)

Folate 17.22 (3.89-26.80)

Iron 14.7 (5.83-34.5)

UIBC 34.8 (24.2-70.1)

TIBC 49.5 (40.8-76.6)

Vit D 85 (75-200)

B12 >1500 (I supplement with B12)

I have ‘never’ had a high FT4 result out of range. I’m guessing it’s because the Metavive also contains T4 too. Is it high because I’m not converting well enough? I could kick myself for not checking the package I brought included the full Thyroid panel. When I got the result (bloods drawn on 12/12/19) I stopped the Metavive. A knee jerk reaction....should I have done so? or should I continue with it, and get a full Thyroid panel done to see where everything else is at?

Also, do you think I could do with some iron top up? I suffer (since beginning of this year) with regular dizzyness, which I’m trying to get to the bottom of. Not severe, but not pleasant all the same. I am going through Menopause so it could be hormone fluctuations that cause my dizzyness? But.....I’ve wondered for a while whether I could be low in Iron. I understand that it isn’t best to add Iron if your levels are good, but mine look like they could benefit from a top up maybe?

One other Q, is it essential to take a B complex alongside supplementing B12? If so, can you recommend a good one that doesn’t contain Alpha Tocopheryl.

As always, thank you for your thoughts. Mandy

12 Replies
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SeasideSusie
SeasideSusieAdministrator

If you started Metavive 5 weeks ago you have increased too quickly. It should be 1/4 grain (15mg) for a week, 2 x 1/4 grain for 3 weeks then increase by 1/2 grain every 3 weeks until you reach 2 grains if you need to.

I think the best thing you can do is buy a Thyroid Monitoring test from Medichecks on Thursday 2nd January when it is supposed to be on offer at £29 instead of £39. This will test TSH, FT4 and FT3.

Decide whether you want to stop the Metavive and get a baseline or continue with the Metavive. Whatever you decide to do, wait 6 weeks after the change before testing.

If you continue with Metavive then take your last dose 8-12 hours before the test.

Your Ferritin is good but your iron is below optimal (serum iron is optimal 50%-70% through range (higher end for males). Iron is complicated and I can't suggest what you should do.

You don't need to continue with B12, our B12 store is good for at least 2 years. Your Folate is also good.

Alpha Tocopheryl is Vit E, it won't be in a B Complex.

Vit D is recommended to be 100-150nmol so you could improve that. If you supplement with D3 then you also need it's important cofactors magnesium and Vit K2-mk7.

EDITED TO ADD:

In this thread from 17 days ago, you said you were taking Levo

healthunlocked.com/thyroidu...

I don't understand what you're taking and how long you've been on it or when/how you changed.

Also, I forgot to say that I remained (on the advice of the Dr) on my 125 mcg of Levo the whole time. Thanks

SeasideSusie
SeasideSusieAdministrator
in reply to Mandy2007

"Also, I forgot to say that I remained (on the advice of the Dr) on my 125 mcg of Levo the whole time"

That's why you've got a high FT4. Why wasn't Levo stopped and a straight swap to Metavive?

I did ask the Dr whether I should reduce my Levo at the same time as starting Metavive and she said, no, to keep taking the Levo. Maybe because of my last few Thyroid blood results and conversion issue?

It is such a lengthy and expensive journey to get the balance right. My GP (and I’ve been to at least 4 over the last two years) are just not knowledgeable or that interested in getting me better. I have spent a lot of money and time, just as many do. This forum is invaluable.

I’m now at a crossroads....do A) I continue with a reduced dose of Metavive and 125 Levo B) reduce the Levo and keep to 45mg of Metavive or C) Reduce my Levo and take less Metavive?

I will (this time) order a full Thyroid panel blood test.

Will I do harm if in the mean time my FT4 remains high? The reason I ask is because if I just go back to my 125 mcg of Levo, I would have gained nothing. My goal is to get my T3 up.

Thank you.

SeasideSusie
SeasideSusieAdministrator
in reply to Mandy2007

I did ask the Dr whether I should reduce my Levo at the same time as starting Metavive and she said, no, to keep taking the Levo. Maybe because of my last few Thyroid blood results and conversion issue?

What were your results/reference ranges at the time Metavive was added - TSH, FT4 and FT3? That's the only way to know if Levo should have been reduced.

I’m now at a crossroads....do A) I continue with a reduced dose of Metavive and 125 Levo B) reduce the Levo and keep to 45mg of Metavive or C) Reduce my Levo and take less Metavive?

When did you take your last dose of Levo and Metavive before this blood test? Knowing that will help answer this question along with full thyroid panel.

I will (this time) order a full Thyroid panel blood test.

Definitely needed to give a meaningful answer, you absolutely must include FT3 test when on Metavive (or NDT or T3).

Will I do harm if in the mean time my FT4 remains high? The reason I ask is because if I just go back to my 125 mcg of Levo, I would have gained nothing. My goal is to get my T3 up.

It wont do any good. It's not a case of going back to 125mcg Levo. It's a case of knowing what your FT4 and FT3 levels are then dosing accordingly with whatever.

When you do your next test, follow the advice always given here:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 (or Metavive) then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

My results taken in Oct’19:

FT3 4.7 (4.2-6.9) Always Low

FT4 13.3 (7.7-20.6) Normal for me

TSH 0.09 (0.30-4.80) Always suppressed

My blood test (draw) was @ 9:15am.

I take my Levo at night around 9:30pm, which I did take the night before.

My last Metavive was taken in the afternoon the day before my blood test.

I stopped my Multi vitamins a week before my draw.

It was a fasted blood test.

Any thoughts? Thank you

SeasideSusie
SeasideSusieAdministrator
in reply to Mandy2007

I'm afraid I am very confused.

I have been looking back at your previous posts.

2 years ago you posted about considering adding T3 to your Levo.

A month ago you were asking for advice about adding T3 to your Levo as you had bought some Cytomel.

18 days ago you wrote that you were on Levo and asking about timing of last dose before thyroid blood tests.

Now it looks like you've said that you were taking Metavive at the time of the October 2019 blood test above yet you also say you've been on Metavive for around 5 weeks which would mean you started taking it aboutg 20th November?

Can we start again and can you confirm exactly what you are taking now, when you changed from Levo, did you add T3, if you're taking Metavive when exactly did you start taking it, etc?

Perhaps you can list your results/reference ranges and what you were taking at the time they were tested.

Hi 😊 I can see why it looks confusing.....

You are right, I have been thinking about adding T3 for some time now, but have been afraid to do so without a professional’s support & guidance, which up until recently I didn’t have. After going back & forth to my GP surgery with no progression, I finally got a referral to see an NHS Endo. The outcome of that was that he said I would likely benefit from adding T3 and suggested I start slow but that is where his input/support stopped! I’m very cautious when it comes to my health, and starting something new anyway, but this year I have had a lot going on with falling off my bike in April, vertigo, ear issues, dizzyness, Menopause, fatigue etc. So, I thought it best to confirm what seemed to be the case, and get the DIO2 test done. That way I felt more confident to start taking some T3 (or another alternative). The test was positive.

I’m now under a (private) Dr that suggested starting with Metavive over T3 as it is more physiological, and to monitor with pulse & temp, which I was doing.

Back in my first message of this thread it states that I had my most recent blood test done on 12/12/19, which didn’t include FT3.

Around a month ago I had asked about the timing of last dose of Levo before blood tests, because I take it a night and so it wasn’t as clear cut when to stop it, as it is when it’s taken in the morning.

I wasn’t taking Metavive in October’19, but that was my last FT3 result. My most recent (BH 12/12/19) one didn’t include FT3, which is why I posted the results for you to see where I was before adding Metavive to my Levo.

So, I am taking 125 mcg of Levo and have been for around 1 year. Previous to that I had been on 75 mcg for 25+ years. It was increased to 100 then 125 by GP based on my blood results at the time.

Because my FT3 is always so low (only knew this through private testing over the last couple of years), and I have been so under par for a long time, and my DIO2 gene test came back positive, I knew I had to add something with, or instead, of my Levo.

I had brought some T3, and had some Metavive that I had brought but never used. So, I asked the private Dr which she feels I should do.... and she said to add in the Metavive (gave me instructions how to do so), but to leave the Levo where it was (125).

I haven’t, as yet, ever taken T3.

My results with ranges that I posted that were taken in October this year, I was on just 125 mcg of Levo.

The results that I posted in my first message of this thread which had the high FT4, were taken on 12/12/19. I was on 125 mcg of Levo and 30mg of Metavive. I think I said 45mg earlier, but I have just looked back and worked it out to be 30 (2x15mg per day).

I’m sorry for the confusion....that’s my brain right now 🤦‍♀️

I thought I had enough going on with Thyroid issues, then the Menopause came along 😳 and then I got vertigo!! I also live with a woozy head and ‘ear stuff that is difficult to explain’. I don’t know if it’s due to deficiencies, hormones or what? I’m tackling one thing at a time, supplements, gut, Thyroid, Candida, hormones. As I’m sure you, and many others appreciate, it is difficult trying to cover so many things.

If the above makes more sense (if not please ask), I would appreciate your feedback 😊 thank you. Mandy

SeasideSusie
SeasideSusieAdministrator
in reply to Mandy2007

Mandy2007

OK, so this is how I understand it:

October 2019

My blood test (draw) was @ 9:15am.

I take my Levo at night around 9:30pm, which I did take the night before.

Last dose of Levo was therefore approx 12 hours before blood draw.

Taking 125mcg Levo only

TSH 0.09 (0.30-4.80)

FT4 13.3 (7.7-20.6)

FT3 4.7 (4.2-6.9)

Your FT4 was 43% through range.

Your FT3 was 19% through range.

12th December 2019

Taking I was on 125 mcg of Levo and 30mg of Metavive

TSH 0.010 (0.27-4.20)

FT4 28.15 (12-22)

Your FT4 was 161.5% of range.

I'm not sure of the timing of your Levo and Metavive before this test but if this applies:

My blood test (draw) was @ 9:15am.

I take my Levo at night around 9:30pm, which I did take the night before.

My last Metavive was taken in the afternoon the day before my blood test.

Then your Levo was taken too close to your blood draw (should have been around 9-9.30am the morning before, adjust timing for a couple of days beforehand to achieve this) and your last dose of Metavive was taken too far away from the blood draw (should have been around 9.30pm to midnight the night before the test)

**

My thoughts, and I am not medically qualified but they're based on my experience of being on Levo only, NDT only, NDT with T3, and once I discovered that I had poor conversion then Levo plus T3 which I currently take:

1) Your October results obviously show poor conversion of T4 to T3 and I agree with the NHS endo that adding T3 to your Levo would have been the right thing to do. However, I would have probably increased Levo first so that your FT4 could get higher up in the range, I would have probably aimed for around 70%, then I would have added T3.

2) I don't understand your private doctor's thinking in adding Metavive to your Levo.

Metavive is not NDT, it is a thyroid glandular with no guaranteed hormone content. However, many members do well on it so let's say, for the sake of this discussion, that it performs similar to NDT, so you may be getting some T4 and some T3, but there would be more T4 than T3. Let's say, for the sake of this discussion, that Metavive gives the same ratio of T4:T3 as NDT, which is 4:1. You are taking 30mg Metavive which is the same as half a grain of NDT which would, if Metavive performed the same as NDT, would give you 19mcg T4 and 4.5mcg T3.

So the total hormone amount (assuming Metavive is similar to NDT) when you had your December test was:

T4 (Levo plus what may be in 30mg Metavive) = 125+19 = 143mcg

T3 (what may possibly be contained in 30mg Metavive) = 4.5mcg which is approximately the equivalent of between 13.5 and 18mcg T4

[Of course, this is all conjecture because we don't know how much hormone may be in Metavive.]

This could be why your FT4 is so much higher - percentage wise - than your October result, but you also have Hashi's and it's possible that there may have been some Hashi's activity which deposited some extra thyroid hormone which could have caused the higher FT4.

And, of course, we don't know what effect it had on FT3 because it wasn't tested at that time.

**

Around a month ago I had asked about the timing of last dose of Levo before blood tests, because I take it a night and so it wasn’t as clear cut when to stop it, as it is when it’s taken in the morning.

It was explained to you the importance of the timing of Levo, T3 (and NDT containing T3) so adjusting timing of dose of thyroid hormone beforehand is important to get the test result which shows the normal circulating hormone with no chance of a false high or a false low.

**

I’m now under a (private) Dr that suggested starting with Metavive over T3 as it is more physiological

We are all different in the amount of each thyroid hormone that we need for us to be well. What suits a pig (NDT) may or may not suit a human. This is why some people do well enough on NDT but some people don't and those that don't do better on a combination of Levo and T3 so that they can find the exact ratio to suit them as an individual.

**

You obviously have a lot going on besides this, and I can't comment on that. But as mentioned further up in reply, you no longer need to supplement B12 with your Serum B12 result so high. However, when you next test I would suggest you do a Medichecks Thyroid Check ULTRAVIT as it includes Active B12 which is a better test than the Total B12 that Blue Horizon includes.

Folate is recommended to be at least half way through range, yours if 58% through range so that's OK. If you want to supplement then a good bioavailable B Complex should maintain your folate and B12 levels. Thorne Basic B or Igennus Super B are often recommended here, but you could also go for a wholefood B Complex such as Naturelo or Garden of Life Vitamin Code Raw B Complex both of which have a good amount of methylfolate but a lower amount of methylcobalamin (B12) than the Thorne or Igennus.

And, of course, your Vit D could be higher as mentioned.

Thank you so much for the time you have spent and the detailed reply you gave me. When I have had my Medichecks test done I will post it. It will give the whole picture.

Maybe adding T3 instead of Metavive will be the way to go as it will be more controllable. But, in the meantime I will stick with the Levo & Metavive together for 6 weeks, test, then review. Thanks again for your support 👍

HLAB35
HLAB35
in reply to Mandy2007

Wrt. iron - if Ferritin is already high I wouldn't try increasing iron too much. The best thing to do there is to reduce inflammation first, so more of the stored iron can be returned to serum ( we store iron to ferritin in response to inflammation as high serum iron can feed the pathogens that increase inflammation). If you have Candida that can cause iron issues. Best thing for that is a post Christmas low sugar diet with things like Goldenseal to eliminate it. Also Magnesium is the best mineral for reducing inflammation and for neutralizing the main toxic byproduct of Candida which is basically the same substance we manufacture from excess alcohol (giving us a hangover). More information is available on Magnesium benefits if you look at Dr Carolyn Dean's blogs.

Mandy2007
Mandy2007
in reply to HLAB35

Thank you, I didn’t realise that. I do have Candida and my intention is to do a cleanse. I think the Christa Orecchio’s looks the right one for me.

Has anyone here done her programme? Thank you.

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