NDT trial with an elevated anti-thyroglobulin a... - Thyroid UK

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NDT trial with an elevated anti-thyroglobulin antibody

YulianaRossenova profile image

Hello all,

Me again.

I'm thinking of trying some NDT in the near future but yesterday's blood test showed a great increase in my anti-tg antibody 440 > 115, anti-TPO is 9 > 34 and has always been 9. My anti-tg increased to 250 once in the past but went down quickly. It has usually been about 16-20. This time I am dubious about it decreasing within range.

I have learned that NDT contains thyroglobulin and I am a bit concerned about trying it but nevertheless I will.

I know everyone is different but in general is it worse to have anti-tg elevated when on NDT?

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YulianaRossenova
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17 Replies
Lousy170 profile image
Lousy170

Hi YulianaRossenova

I'm not sure I can answer your question other than to give my own experience...

I started NDT in Aug 2015 and had tested my antibodies prior to starting - my TgAb was 491 at that time. I have Hashi's.

In June 2016, when I retested, it was 2617 - this coincided with a Hashi's flare and crash that resulted in me being off work for almost 8 weeks.

I have retested again to monitor my condition and now in the 900's.

I've always taken the antibodies to indicate the level of attack on the thyroid at any given time, as the Hashi's swings. I'm not sure that having elevated TgAb would be any different on other meds...?

Louise

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

Thank you, Louise.

Do you feel well on NDT? How did you overcme the June 2016 flare and crash?

How many grains are you on?

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

I feel better on NDT than I ever did on Levo, but I haven't achieved optimal levels or treatment on NDT yet - that's a work in progress!

I have other issues as well that are complicating this process - adrenals, iron, folate deficiency, low B12, low D, possible PCOS, MTHFR and DI02 mutations...

I feel that I didn't know how to actively overcome the June 2016 flare and crash to be honest, it took being off work that long and then returning to work on a graded return to allow me the time and space to try to recover. However, I haven't fully recovered and am currently looking to reduce my hours at work to support my long-term wellbeing and put my health first in order to try to achieve optimal wellness.

I have just started a new treatment protocol at the beginning of the year and am now taking one grain daily of NDT along with T3 due to pooling.

Louise

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

I feel I have a T3 pooling problem as well.

My last results are perfect - FT3 over range, however I feel very ill, I feel the same way I felt when my FT3 was at 60% of the range.

5 months ago I was taking 75 T4 and feeling ill. One month ago I was taking 188 T4 and 18 T3 and feeling the same - as if I am taking 75 T4.

Now I am taking 75/100 T4 and 20 T3 and feeling the same, I am becoming even more ill.

I really don't know what to do.

As if there is no hormone that can help me.

I have MTHFR as well, which leads to iron building up in blood and low ferritin levels. I cannot overcome that by taking iron... So my ferritin will stay low and I know this is not good when you take T3.

How much T3 do you take?

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

I'm currently taking T3 split into 3 doses a day - 1.25 tabs of 25mcg T3 (i.e. 31.25mcg) = 0.25/0.5/0.5.

I'm worried that I just cannot seem to get my "ducks in a row" - my ferritin is too high (indicating inflammation, which may be the attack on my thyroid by the antibodies or may be something else I don't know about); my adrenals aren't good, but can't see that improving soon due to the huge stresses at work at the mo; I'm treating the low folate, B12 & D. As for the MTHFR etc, I've not long found out about that and still trying to get my head around all the info and what it all means....!

I really hope you find the combination that works for you soon.

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

There is not much you can do about MTHFR except taking methylated folic acid, i.e. folate and the active form of B12 - methylcobalamin. You should also want B6 to be in the P-5-P form.

This mutation is related to autoimmune conditions.

Were you pooling rT3?

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

Yes, already taking methylfolate, methylB12 & P-5-P forms. Although I have been wondering about taking hydroxoB12....?

Thank you for your answer though, feel I might understand some of the basics of my genetic testing but so much info to wade through!

No, I wasn't pooling rT3, just T3 - how about you?

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

You can take hydroxoB12.

Yes, I am pooling t3 as well. I have wonderful blood results (FT3 a bit over range) however I feel awfully hypothyroid. I really don't know why that happens.

If you are pooling T3, then why are you taking so much t3?

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

I am following the STTM protocol for pooling T3. My FT3 is below the top of the range, it's my FT4 that is awfully low, well below the bottom of the range. Aim is by introducing an external source of T3 my body will slow down over-converting the FT4 to FT3 in its attempt to meet my body's T3 needs, thus increasing my FT4 to more appropriate levels.... hope that makes sense!

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

Yes, it does.

It even might answer my question I just posted separately in a new post: I always feel worse when I add T3 to T4. I feel worse on T4/T3 combo than on T4 alone.

It may be due to the added T3 making T4 under-convert to T3.

My FT4 is in the top 1/4 of the range. It has never been low, not even mid-range, that is why I added T3 in the first place (my FT3 was hardly mid-range) but I feel worse.

I feel ill on T4 alone.

I feel worse on T4/T3.

I have tried T3 alone and that was the worst of all.

As if there is no right hormone or combination of hormones for me...

Sometimes I wonder what will happen if I start taking 250+ T4, raise my FT4 to over range and thus raise my FT3...

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

I'm sorry, I'm not sure what the answer is for you. Perhaps it might be worth trialling NDT?

My latest FT4 was 5.72 (12-22) and my FT3 was 6.07 (3.1-6.8), so our situations were clearly different.

I hope you figure out something that works for you, maybe one of the admins can give you more pertinent advice....?

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

How did you feel at the time of these results?

Low FT4 does not really matter if you feel good.

My FT4 was 19.25 and FT3 6.85 on 62.5 T4 and 18 T3. And I felt the same way I was feeling with FT4 19.33 and FT3 5 (on 75 T4).

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

I still have hypo symptoms. And we're trying to get pregnant but struggling - everything I've read about optimal levels for pre-conception, conception and pregnancy recommend FT4 levels in the upper half and FT3 levels in the upper quarter, something I've not been able to achieve.

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

Oh, yes, FT4 is really important for the foetus. It relies on mother's FT4 during the first trimester till it forms its own gland.

FT3 is not so important, I mean for the foetus, but it is important for your well-being and affects your ability to get pregnant if it causes sex hormone imbalances as well.

I've been through 2 pregnancy - one with a healthy thyroid and one with full-blown hypothyroidism.

I can tell you that FT4 and FT3 levels get very low during the third trimester. I don't know why.

It was impossible for me to keep my FT3 and FT4 at the required levels in the third trimester of both my pregnancies and mind you - I was on no thyroid medication during my first one, since I had no thyroid problem back then, I was feeling totally fine with this levels in my third trimester of first pregnancy. My TSH never went above 1.5 though. As soon as I gave birth, my FT3 shot at 7+ and FT4 went up.

I became hypothyroid 8 months before I conceived for the second time.

I had these tests during my first pregnancy because I am a hypochondriac and wanted to keep everything under control since I have thyroid nodules which doctors were telling me are just ordinary nodules but it turned out it was Hashi's.

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

How are your adrenals? I forgot to ask you?

Lousy170 profile image
Lousy170 in reply toYulianaRossenova

Yes, I ideally want to get my FT4, folate and B12 up before conceiving, but concerned that time is not on my side. My Naturopath has also recommended that I need to detoxify the high levels of certain heavy metals that my provoked urine test identified, so I am starting her heavy metal detoxification process.

My adrenals? I last tested by saliva in Oct - it showed low-high-high-high. So I'm currently taking maca powder and starting other adaptogens too. This result was very different to my 1st result in Aug 2015, but may reflect the chronic stress I've been under at work for over a year now.

How are your adrenals? And any other feedback from others about your results?

Thanks for all your helpful advice, given it was you asking the original question!

YulianaRossenova profile image
YulianaRossenova in reply toLousy170

I haven't tested my adrenals yet. Here (Bulgaria) we don't test that. 95% of people here are on T4 only. You can imagine... how many of us are under-medicated...

Do you have any specific symptoms corresponding to the saliva test results?

For example feeling tired in the morning due to the low morning cortisol... etc.?

I am considering doing heavy metals urine test as well, but no doctor can outline a detoxification programme for me.

I think heavy metals overload has to do with MTHFR mutation! That is a pain in the ass...

I am compound heterozygous (C677T+A1298C). It is even worse than homozygous 677 or 1298... or so they say.

I also have endometriosis and an AI skin condition. I think they are all related to MTHFR.

Is your detoxification process a hard one to do?

I am thinking of trying big doses of vitamin C...

What were your heavy metals in excess?

Have you had your rT3 tested?

I am awaiting on my rT3 result now.

I think pooling has to do with rT3 building-up.

Although it might also have to do with just unexplained thyroid hormone resistance - something at the "border" between blood and tissues.

Either way I think I will need to go T3 only and that will be particularly hard since I cannot tolerate big doses of T3 and I feel totally better with T4 in my system.

The only feedback was that I am pooling, so my initial suspicion was well-grounded...

My FT3 is 6.85.

When I was healthy (I mean at the onset of my thyroid illness when I was on NO medication yet) I would start to get symptomatic on FT3 less than 6.60. On FT3 5.93 I was very ill.

I am wondering: what if I don't have a pooling problem (I will be so lucky) what if I don't have a rT3 problem, what if I just need a higher level of FT3 when on medication to feel well.

I really don't know...

Some labs here give different upper range for FT3 in pmol/l: 6.10, 6.80, 7.10.,7.80, 8.30, 8.80.

Lower range is different too:

2.80, 3.10, 3.50, 3, 95, 4, 4.50...

So I really don't know what to do...Either way I have no doctor to work with me...

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