I switched from Levo to NDT - interim blood tes... - Thyroid UK

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I switched from Levo to NDT - interim blood test results as expected?

davidlee72
davidlee72

Hi,

So a quick summary of my previous posts, I switched from 100mg Levothyroxine to Natural Desiccated Thyroid (Thiroyd from Thailand) 3 months ago.

After 3 months my symptoms are still the same, very drowsy, tired, brain fog, bad memory, etc. I'm now on 2.75 grains per day, increasing by 0.25 grain about every fortnight.

I just got some blood test results, the first blood test since starting NDT. They are:

TSH 0.045 (0.55 - 4.78)

FT4 9.91 (11.5 - 22.7)

FT3 5.77 (3.5 - 6.5)

That's all that was tested by the doctor. My plan is that I'll test again privately in March for thyroid values plus iron, vitamin D, B12, etc.

My blood test results before switching to NDT were:

TSH 0.65 (range 0.27 - 4.2)

FT4 15.3 (12.0 - 22.0)

FT3 4.3 (3.1 - 6.8)

Anti-TG antibodies 12.1 (0 - 115)

Anti-TPO antibodies <9.0 (0 - 34)

25 OH Vit D 74 (50 - 200)

Active B12 81 (25.1 - 165)

Ferritin 86 (30 - 400)

Folate serum 12.9 ( > 2.9)

So, are my latest results what you'd expect? I expected the TSH to be suppressed after switching to NDT, which it is. I expected the FT3 to have increased, which it has. I was hoping for FT4 to at least be around the bottom of the normal range, but as it's outside the normal range perhaps that would help explain why I still feel fatigued and brain not functioning great.

I'm planning to keep increasing the NDT over the next 3 months. As I reach around 4 grains per day maybe I'd expect the FT3 to be higher towards the top of the range and for FT4 to have increased to be in the bottom of the normal range......and hopefully I'll be feeling like a new man?!

Any thoughts?

By the way, before starting with thyroid medication in 2012 my TSH was only 4.42 (0.3 - 4.2) & FT4 13.5 (12.0 - 22.0), so I wouldn't say it's conclusive that my underlying symptoms are thyroid related. Opinion is divided.

I'm taking a bunch supplements to help increase vitamin levels, e.g. 6,000mcg sublingual B12, 5,000 IU per day of liquid Vit D3, 65mg ferritin, selenium, etc.

Thanks

David

12 Replies
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I've tried 4 to 5 grains of Thiroyd, but currently take 1.75 grains + 87.5 mcg of levo. Taking 175 mcg of levo I had under range TSH and FT4 bumping the top of range but still felt hypo and was in fact more shivery than earlier. This may be due to my history of inadequately treated Lyme disease. I managed to get a free T3 test included and my fT4:fT3 ratio of over 4.6:1 persuaded me to add a source of T3, which had immediate positive effects, though not in all areas. If I take too much, I quickly know by the effect on my bowels and arms/shoulders. Have you seen no improvement in any area?

Your drowsiness may be due to sleep apnoea. If you have a partner, they may have observed interruptions to your breathing when you're asleep. Other clues are snoring; a blocked nose; needing to pee in the night; a dry mouth when you wake. You don't need to be overweight or snore to be affected. There's a simple way of rating the problem, the Epworth Sleepiness Scale. Telling your GP your Epworth score could get you an appointment at a Sleep Clinic, where you'd be sent home with monitoring equipment to analyse the problem overnight, and have a CPAP machine supplied, if necessary. And if you need one, it's very necessary. Good luck!

Hi,

Thanks for your message.

I've had 2 sleep studies over the years and they said that at worst I had mild sleep apnoea. All things considered I think my sleep isn't 100% but not the underlying cause of the symptoms. One reason for thinking that is it's impossible for me to feel fully refreshed from sleep regardless of how much quality sleep I get. I'm not discounting it completely but that's my thinking at the moment.

No I haven't noticed any improvement yet from the switch from Levo to NDT, in any area.

I did notice some aching in my neck glands when increasing the NDT dose but that's about it.

It's a real struggle to get through the day without sleeping in the day. I'm fortunate in that I don't have to work at the moment though.

I just had a look at the Epworth Sleepiness questionnaire and I wouldn't get a high score on that. Short-term I can push myself so that I don't fall asleep in meetings or in a car etc but longer term I'm ****ed!

I suspect thyroid issues are the underlying issue. The only other thing on my radar is to do with having been vegetarian for 30 years. I'm currently boosting the common deficiencies in vegetarians like iron and B12. We'll see. I'm not looking forward to the prospect of eating steak for a month just to test out the theory of whether a lack of meat is the problem. Hopefully NDT will sort me out instead.

Thanks

David

julbrad
julbrad
in reply to davidlee72

Hi David,

I was vegetarian/vegan/macrobiotic for 20 years and it really does play havoc on the body if you are not very careful to get adequate nutrients through supplementation. It has taken me five years to finally feel better after being quite anemic, Vit d level down at 17 OH, very low energy, fatigue, etc. I now eat mostly anything of good quality, organic, free range, etc. and feel so much better. (But you can be vegetarian and be quite healthy...).

—Did you check your adrenals? Low adrenal function goes hand in hand with thyroid issues, and can make you have very low energy. You can get a cortisol test - if you look on the Stop the thyroid madness website you will find info on this. I take a supplement to support my adrenals, which is basically herbs. You can also take an adrenal organ supplement, I believe, if needed. The adrenal support supplement may need to be taken up to a year (or longer) to feel better and your thyroid won’t feel optimal as well until your adrenals are supported and working adequately.

davidlee72
davidlee72
in reply to julbrad

Hi julbrad,

Yeah the vegetarian side of things is interesting (for me at least). Was your anaemia fixed just by supplementing iron? I would've thought a Vit D deficiency would be separate to being vegetarian, not that I know for sure.

Various GPs have all said my vitamin levels are ok and that I'm not anaemic (I'm not convinced). However despite that I'm now supplementing to get my iron, B12, Vit D, etc. at an optimal level rather than just a minimal level to see if it helps.

My thinking has always been that if I can get my iron, B12, folate, Vit D, etc. levels optimal then can't I completely discount the idea that being vegetarian is a cause of my symptoms?

I've been tested for a zillion things, but not the cortisol test yet. I was really hopeful that NDT was going to fix me but no, in fact I'm a little worse. So the cortisol test is the next thing on the list.

Thanks

David

Hi Davidleee72, that thyroid panel looks about as expected, your analysis of how each measure has changed looks correct to me. And I think you're right to just keep increasing, you've got wiggle room at the top of the freeT3 range.

The only thing you might try is slowing down the increases. Did you say you're increasing about every 2 weeks still? The blood tests are not really valid until you've held for 6 weeks on a dose,, me my experience of raising (I did it much more slowly) is that symptoms continue to develop many weeks after a dose change. I'm on day 30-ish of my current dose change, and have had a strange week which I often do sometime around the 4 week point on a new dose.

I never did use the quick increase method you're using, so I'm not quite sure of the detail, but people tend to recommend increasing to about 3 grain more quickly, and then slowing down to the every 6 weeks and have a blood test at that point, so you're almost there. If you do this you'll get a much clearer feel of what your symptoms truly are on that dose, because so far your body has been playing catch up.

The other thing is that your vitamins look quite bad. The rule of thumb with these is that you want numbers at least halfway through the range, and often close to the top. Vitamin D wants to be closer to the top of the range. No one seems to know how to interpret active B12, so this may not be too bad, but look into it yourself because I only know the basics. Ferritin is also low-ish in range, which I suggest you look into because I think it's a more complex question. SeasideSusie is a good person to look into, she's very good with all these supplements, and you'll find her commenting on people with a simila test profile to yours.

I see you're taking some nice high doses to supplement these, so you're on the right track. If you've got older blood tests have a check and see if what you're doing has resulted in raised levels, and if you're not seeing expected levels think about ramping up the supplements. In most cases there is a more bio available form or a different way to take it.

All these vitamins need to be in good shape for thyroid hormone to work properly and they all give symptoms of their own at excels well within the range. This is not a comment on your diet, it's that being hypothyroid for long periods trashes vitamins in the body.

Eating meat is something to think about, as a low carb, high fat diet, with plenty of animal fat, or a paleo diet seems to be the easiest diet on the body for hypo people. Definitely start with the path of least resistance, if you I decide to try. Find a good organic, high welfare supplier, and have it occasionally. Something palatable like adding a bit of mince or strips of meat to a sauce you already like or a bean stew. Or maybe try some bone broth if you can get hold of organic chicken or beef bones, that can be included in other dishes so hopefully you won't taste it too much.

Hi SilverAvocado,

Thanks for your message and sorry for the slow reply.

Yes I've been increasing the NDT reasonably quickly but by small amounts. Having read about switching to NDT on this website and also the Stop The Thyroid Madness website I opted to increase the dosage every fortnight, if my symptoms didn't change and my body temperature and resting heart rate didn't rise substantially. I increased by half a grain each time up to 2 grains, and since then by a quarter grain.

So I'm up to 3.25 grains per day at the moment. No improvement in symptoms, if anything I feel a little worse, I struggle to get through the days at the moment as I'm so drowsy and tired.

You mentioned that ideally I should stick on one dose for 6 weeks before having a blood test in order to get an accurate picture. Do you think the difference is relatively minor though? I'd read that the half life of T3 was 24 hours and T4 was 7 days, and that the trailing increases after that time are relatively small. So I was thinking that although the blood values might not be 100% accurate if I test after 2 weeks on one dose, that they weren't going to be very far off. What do you reckon?

However having said that my plan is now to do just one more increase to 3.5 grains towards the end of this month and then 6 weeks later in mid-March I'm getting tested for the lot (through Medichecks). Thyroid, vitamins, cortisol saliva, testosterone, the lot.

If the results from that blood test look good, and the NDT still hasn't helped my symptoms, then I'm getting to the stage where I can only assume that thyroid isn't the underlying cause of my health issues.

Thanks

David

Are you saying that in the whole 3 months your symptoms haven't improved at all, even a tiny bit?

That's definitely surprising, and I agree with you that it suggests the hormone replacement isn't working for you, or maybe you should be on a dose very differently from what you are. Some people require T3 only or NDT to get improvement, but even then I'd expect a little improvement with each dose increase.

I'd definitely advise slowing down, because that will give you a chance for your whole body to settle down and get a clear impression of symptoms. Your plan sounds great to me. You might find symptoms change a bit during that time.

Best practice with blood tests is to wait 6 weeks. Increases will obviously kick in a bit faster than decreases, because you're not waiting for hormone to wash out of your body, so it's only a rule of thumb. But 2 weeks is really really pushing it. I'd say you might get away with something like 5 weeks but you still wouldn't be sure without testing it yourself.

Hormone getting into your body isn't a simple thing like e.g. dissolving the tablets in a glass of water. Your body has to process the hormone to get it into your bloodstream, and then process it some more to get it into your cells for use. It probably depends on a lot of factors how much difference the 6 week wait will make.

If you really haven't had any improvement at all on the NDT, then I think you have to be skeptical that its helping you. The justification for continuing to raise has to be found in a combination of blood tests and symptoms. If you're in a situation where you didn't have blood tests, and also didn't have improving symptoms, then you don't have much evidence to support doing it.

It's possible you've gone past your sweet spot at some point in the increasing, and you'd be better on a lower does. It's also possible you might feel better on T3 only rather than NDT.

Although it might be that once your vitamins have improved you'll get more benefit from the hormone, because optimal vitamins are needed to fully outlier thyroid hormone.

Unfortunately it's a slow path to try all these things out and figure out what you need.

Hi,

No definitely no improvement in symptoms unfortunately. I'd read so many accounts of people feeling an almost instant improvement when switching from Levo to NDT that I had hoped to be the same but sadly no.

I have noticed the last week or two (on 3.25 grains) that I've been having insomnia more, and also having mild palpitations, so I'm guessing that might be my body saying that I'm getting towards my max amount of thyroid medication. Possibly.

My body temp and resting heart rate haven't shifted one bit though since starting NDT.

If I get to my March blood test having stayed on a specific dose for 6 weeks, and my thyroid, iron, Vit D, Vit B12, and cortisol levels all look optimal then I'm not sure there's much more I can do to improve thyroid related things and therefore resign myself to searching elsewhere to figure out my what my underlying health issue is.

Thanks

David

p.s. what I find weird is, the only time I've felt better and all my symptoms disappeared almost instantly, was when a few years ago I had hyper symptoms following an increase in Levo and had to stop taking Levo altogether for a few days. Those few days after briefly stopping Levo is the only time I felt fixed. Then the hypo symptoms returned. People have said to me that it's common to briefly feel better after stopping thyroid meds. Still, it does seem a little odd. Anyway....

It's definitely a puzzle to have felt no improvement :( I'm one of those who instantly felt different on NDT, but I also definitely felt some improvement even on Levo.(Although when I say 'instant', it would still have been a week or two)

It does make me a bit suspicious that you don't need thyroid hormone at all, and that's worth bearing in mind as a possibility.

Although your prior blood tests do look quite hypothyroid, but you're right often you wouldn't be diagnosed until the TSH was higher. I'd also expect you to need a lower dose because you were more mildly hypo, although it doesn't always work that way.

It would be good news if one of your vitamins comes back quite low and you can investigate something like B12 deficiency, which has symptoms similar to hypothyroid.

Yes, often people do feel better at first on no hormone, especially if it's horrid Levothyroxine (although some people do do well on it, don't rule it out without a proper trial). I used to feel better when I went without for blood tests, but as I got closer to a dose that works for me I now feel worse if I have a break.

It is still worth trying T3, as some people have a strong preference for that over NDT.

I also think it's worth giving more of a try of some other doses, like maybe spend 6 weeks on some of the lower doses. Just because when you get to the point of not knowing what to try next, it's worth really properly trying every option long enough to be absolutely sure you can cross it off the list. That's just my personal philosophy for how to search for answers, though!

Looking back at your blood results, I wouldn't be surprised if your freeT3 is over range at 3.25, so you might not even want to go to 3.5 if you feel a touch overmedicated already.

Yeah I'll see how it goes the next 2 or 3 weeks before deciding whether to up the dose to 3.5 grains or not. I definitely won't amend the dose 6 weeks before the blood test though.

My FT4 was below the normal range last blood test. Apparently an FT4 mid-range and FT3 near the top of the range is the optimal target.

So I think I'd want the FT4 to be a fair bit higher before I decide that the thyroid levels are optimal, or as near as damn it.

Thanks

David

On NDT freeT4 will be fairly low, quite a bit lower than freeT3. It doesn't matter too much where your freeT4 is as long as freeT3 is good.

Some of the rules of thumb are based on taking Levothyroxine, in that case because you're only taking T4 the levels need to be high on order to have enough to convert into T3. Some people do feel they need decent FreeT4 level to feel well, but theoretically it's irrelevant.

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