On NDT - Need help with latest results, please. - Thyroid UK

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On NDT - Need help with latest results, please.

JaniceJ7 profile image
13 Replies

A bit of background – I have Hashimoto’s, I had my thyroid removed in two operations in 2014/15. I had a very large goitre which started growing again hence second op to remove all thyroid. After the ops I did not do well on levo. Thought I was just going to have to feel exhausted and brain fogged for the rest of my life. However, the next random GP at surgery looked at all results, all visits, actually looked at me and suggested I try NDT. (I know, this just doesn't happen with NHS GPs but she was a bit of a maverick and did her own thing!)

Fast forward to now - been on 3 grains Armour for a few years now, getting blood work regularly. I’ve been feeling fine up until last few months. Now it takes ages to get myself organised to do anything and whole days can disappear while I do nothing. (For example, I picked up latest results on Monday and this is me just getting round to posting on here.)

Latest bloods show FT4 76% through range and FT3 65% through range. Ideally, I would like to increase T3 but that isn’t going to happen through NHS. Would my T4 get too high if I raised NDT only? Is there a problem if FT4 ends up at top of range? My amazing GP retired in January so I will have to try to convince one of the remaining GPs to raise NDT.

27/07/20

On 3 grains NDT

Bloods drawn at 10am, fasting, 1 Grain NDT taken at 10pm night before

TSH less than 0.1 (Range 0.27-4.2)

FT419.1(Range 10-22)

FT3 5.5(Range 3.1-6.8)

Had Vit D tested at the same time but don’t have the results yet

29/04/20

Ferritin68(Range 30-400ug/L)

Folate9.5(Range 3.9-26.8ug/L)

B12559(Range 197-771ng/L)

In April I had been taking Jarrow B-complex for 4/5 months as my folate was just below range in the autumn. I stopped the pills a week before blood test and I haven’t started again so folate probably way down again. (Guess that’s when my lack of oomph started.)

I’m also taking Mesalazine for ulcerative colitis so get various bloods checked every 3 months – full blood count, liver function test, urea and electrolytes. Only things highlighted as regularly low are haemoglobin, haematocrit and MCH, globulin just over range but no-one seems to worry about them.

I think I need to raise NDT by ¼ grain

Start Jarrow B-Complex again

Eat pate, red meats and black puddings

And remember to pick up my Vit D results in a couple of weeks.

Any other advice you could give me?

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JaniceJ7
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13 Replies

I can only comment from my own experience with levo only and levo + T3 (I never did well on levo only; diagnosis: Hashimoto´s).

What strikes me is that your lab results look very different from mine on T3 + T4.

When I was on levo only (200 mcg daily), my FT4 levels were at top of range, but my FT3 not even halfway through range (indicative of poor conversion).

However, since going on levo + T3, my FT4 levels have been considerably lower. I take 150 mcg of levo daily (which is more than many on combo drugs take but I need that much for complete symptom-relief) along with 25 mcg of T3 (self-sourced). On T3+T4, I cannot get my FT4 levels above midrange even on 150 mcg of levo daily. My FT3 levels come back at top of range (but not over) if I take half the dose of T3 12 hours prior to testing.

It´s all about how you feel, and not about labs...although I am a bit surprised to see your high-in-range FT4 levels on NDT as any form of T3 seems to result in lower FT4 levels.

I am not sure about taking more NDT to raise FT3 levels since NDT is 80% T4 and your FT4 levels are already high in range.

In my experience, people optimally dosed on NDT tend to have lower FT4 levels and higher FT3 levels as pigs produce those hormones in different ratios than humans. Your lab results look more like someone on levo only, but with pretty good conversion.

Some people add T3 to NDT to get a different T3:T4 ratio that the one present in NDT. If they are clearly FT3 deficient, that is.

However, you took 1/3 of your daily dose of Armour 12 h prior to testing, so it´s logical to assume your FT3 levels were higher on the previous day after taking 2 grains of Armour in the morning.

Do you have any concrete symptoms of being under medicated? Or maybe you have just found the right dose of NDT for your needs? You should never dose by lab results only, but go by symptoms and symptom-relief.

JaniceJ7 profile image
JaniceJ7 in reply to

Thank you for your reply. I don't understand why my FT4 is high and FT3 low either. I do have symptoms as mentioned in my post - no energy, no enthusiasm, can't keep up with basic tasks. NDT taken the day before as advised on this site.

pennyannie profile image
pennyannie

Hello Janice

I am on NDT and it's my understanding that you treat t the relief of symptoms and that these blood tests and ranges were introduced to be used alongside Levothyroxine, and all introduced to supersede NDT in the 1960's.

My TSH comes in at 0.01 - my T4 comes in towards the bottom of the range - and my T3 comes in slightly over or at the top of the range : I have no symptoms of hyperthyroidism.

I actually was diagnosed with Graves and had RAI thyroid ablation in 2005, becoming very unwell some 8 years later and finding no help nor understanding within the NHS started self medicating and am much improved looking after myself.

I know if I keep my ferritin up at around 100 - my conversion of the T4 content in the NDT improves and I do try and maintain optimal levels of B12, vitamin D and folate, as well as I think all four work together to improve core strength, conversion and well being.

I am not concerned about the low T4 as I believe it's low because I'm converting it into T3, which is the most important number of them all.

Obviously many moons ago NDT was simply dosed to the relief of symptoms, as there were no blood tests. So this would have also applied to the vitamins and minerals so if they were low, or had dropped, you simply added extra NDT to compensate for the shortfall in these essential nutrients.

When you consider the content of most NDT is about 38 T4 to 9 T3 and most people need about 50 T3 just to function it does come down to each person's own ability to convert the T4 and no doubt those with limited conversion will be taking a greater number of grains.

If you have some results of when you felt better on this dosage maybe you can see what has changed with regard to the vitamins and minerals.

I don't think your new doctor can simply stop your NDT but you may find yourself referred to an endocrinologist to confirm that you need to be kept on this thyroid hormone replacement on a named person only prescription.

I wasn't successful in getting either NDT or a trial of T3 on the NHS - hence my self medicating.

in reply topennyannie

I am glad you are feeling good on NDT, but I could not help but react to a few statements you make (which could potentially be confusing to (potential) users of NDT/T3):

"I know if I keep my ferritin up at around 100 - my conversion of the T4 content in the NDT improves and I do try and maintain optimal levels of B12, vitamin D and folate, as well as I think all four work together to improve core strength, conversion and well being.

I am not concerned about the low T4 as I believe it's low because I'm converting it into T3, which is the most important number of them all."

How do you know that a ferritin around 100 improves your T4 to T3 conversion when on NDT; it´s my understanding as well as experience that, once on any form of T3 (synthetic or NDT), you really cannot tell how well or poorly you are converting T4 to T3 since you are getting direct T3 from the drugs?

Also:

If your FT4 levels are low on T4, that has nothing to do with "converting it into T3", since NDT contains T3. So, when you take NDT (or synthetic T3), there is less need for your body to convert T4 to T3 (conversion is really only relevant when on T4 only meds). FT4 is often low on NDT/synthetic T3+T4 combos, but that is not because you are converting more T4 to T3, but simply because you are taking T3, hence bypassing the need for conversion.

pennyannie profile image
pennyannie in reply to

Hey there:

Well, I have 2 sets of blood test, taken at identical times a year apart on the same dose of NDT :

With the second year I knew I wasn't feeling as good as the first year - my T3 had gone down as had my ferritin levels but my T4 level had gone up :

I thought one needed to convert T4 into T3 whether it be in the form of Levothyroxine or that proportion within the NDT ;

in reply topennyannie

Not as far as I know, or at least conversion will decrease when on NDT or levo + T3 since you are getting direct T3 from NDT or liothyronine.

Others will have to comment on this as well, but it is my understanding as well as experience that, once on any form of t3 (NDT or lio), you cannot tell how well you are converting T4 to T3 since that can only be determined on levo only.

I have done a lot of research to find out why FT4 levels tend to go down on NDT/lio, and the only explanation I´ve found is that once you are taking direct T3, the body holds on to less T4 as there is a decreased need for T4 to T3 conversion. So, while a person on NDT or lio should not necessarily worry about low FT4 levels, a person on levo only should...

Having said that, I very much doubt that having low FT4 levels on NDT means that your conversion has improved...as I said previously, I think you can only improve T4 to T3 conversion on levo only, and once on any form of T3, that conversion gets irrelevant.

pennyannie profile image
pennyannie in reply to

Hey there,

I've just amended my previous reply as I forgot to mention that in the second year my T4 went up as my T3 went down and my ferritin dropped down -

Sorry - I don't know if you'll be " pinged " for an edit so am typing it again here.

in reply topennyannie

OK! My reply was about making sure people don´t try to improve T4 to T3 conversion on NDT because I think that, if you go on NDT, it´s because you are a poor converter...once on NDT, conversion does not really matter since you getting direct T3 from the NDT. Just to avoid misunderstandings.

pennyannie profile image
pennyannie in reply to

Yes, thank you for your explanation :

No thyroid hormone replacement works well if vitamins and minerals are not maintained at optimal levels and that's all I was trying to say.

I saw a direct correlation between my lower ferritin level, my lower T3 but my higher T4 blood test results compared to the previous year.

I'm simply talking about one's own body's ability to convert thyroid hormone replacement, and optimum vitamins and minerals assist in this process.

I was not talking about the T3/T4 conversion ratio that can be applied when on T4 only since the original question was asked by someone who is taking NDT.:

in reply topennyannie

"I'm simply talking about one's own body's ability to convert thyroid hormone replacement, and optimum vitamins and minerals assist in this process."

Yes, but that is exactly what I mean: how important are optimal vitamin and mineral levels once on NDT so getting direct T3 (especially on a full replacement dose of NDT)? And: just how important is the T4 to T3 conversion when on a full replacement dose of NDT or liothyronine, given that your body then won´t have to make sure all your T3 comes from the conversion of T4...?

I´m hoping others will chime in as I would like to find out as well.

However, spontaneously, I feel there has to been some difference between taking NDT/T3+T4 on the one hand, and T4 only on the other...I still suspect you are mixing things up but, as I said, hopefully, others will chime in.

JaniceJ7 profile image
JaniceJ7 in reply to

I think it's very important to have optimal vitamin and mineral levels as commented on my many people, esp. SeasideSusie on here. NDT is obviously not giving me enough T3 at the moment. The T4 I'm taking doesn't just float about my body doing nothing - it must be converted to some T3 too. In order for this conversion to be optimal I must have optimal vits. I will work on this and see what happens to my results in a few months.

pennyannie profile image
pennyannie in reply toJaniceJ7

Asda sell little pots of frozen chicken livers - they are very clean and mild -

1 tub a week - flash fried in a little olive oil and then whizzed down into a pate and kept in the fridge works for me now - a spoonful each morning with a dollop of mayo helps this medicine go down :

JaniceJ7 profile image
JaniceJ7 in reply topennyannie

Just bought some pate today but I'll look out for the pot next time!

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