NDT and adding levo: Dear all, I saw endo today... - Thyroid UK

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NDT and adding levo

AleB profile image
AleB
17 Replies

Dear all, I saw endo today who suggested my T4 was low (see my last post for results on 3rd Sept). Suggested that I add 50mcg of Levo and reduce NP Thyroid to 1 1/4 grain. Previously I seem to yo yo between 1.5 grains feeling really rubbish and then feeling overmedicated on 1 3/4 grains. I reduced np thyroid 4 days ago because I was losing weight, heart palps etc and more hair loss. Now I am feeling very fatigued, and odd heart rhythms! Please could anyone advise

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AleB profile image
AleB
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greygoose profile image
greygoose

TSH 5.62 range 0.27 - 4.2

Free T3 4.19pmol/L range 3.1 - 6.8

Free Thyroxine 11.200pmol/L range 12 - 22)

Those were the results you gave 15 days ago on 1 3/4 grains NDT.

healthunlocked.com/thyroidu...

Not only was your FT4 low, but so was your FT3 and your TSH was much too high. You were very under-medicated.

Be careful of symptoms, so many of them can be due to under-medication and over-medication. Losing weight, for example.

So, if you've reduced your NDT since then, then it's not surprising you're having a lot more symptoms. You needed and increase in dose, not a reduction.

In your last post, you were talking about increasing your iron intake, because your ferritin was low. How's that going? All nutrients need to be optimal for you to do well on NDT. And, I don't think your endo giving you levo is going to help if you're reducing your NDT at the same time. Are you sure that's not just a ruse to get you off NDT and onto all levo?

AleB profile image
AleB in reply togreygoose

Hi Greygoose, the endo put me on NDT! To be honest I really haven't done well on it and I've been taking it for 7 months! Prior to this I was on Levo for 7 years, but not knowing that I was a poor converter! In desperation I went private in December 2018... A lot of money, and not much to show for it... I think endo has run out of options for me! I really don't know what to do, GP hasn't a clue, and just keeps pushing back to endo!

greygoose profile image
greygoose in reply toAleB

Why doesn't that surprise me!

OK, so first thing to do is optimise nutrients. How are you getting on with that? NDT won't work for anybody if they are optimal.

One thing is absolutely certain at the moment, and that is that you're undermedicated. And, if you're a poor converter, there's not much point in increasing levo. It's low T3 that causes symptoms, and yours is too low. I think you need to increase your NDT or, add T3 to your NDT, not levo.

AleB profile image
AleB in reply togreygoose

Well as per my last bloods 2nd Sept I have doubled my ferrous fermarate to 420mg perday 4 hours after thyroid meds. Vitamin d 2000iu per day, b complex but not taken b12 due to high reading! Also taking magnesium and probiotics and digestive enzymes!

greygoose profile image
greygoose in reply toAleB

And the vit D is also taken four hours away from the hormones? And the iron is also taken two hours away from everything else? How about vit K2-MK7?

AleB profile image
AleB in reply togreygoose

I take vit D and Eskimo oil together after dinner. I've not sure what K2 MK7 is?

AleB profile image
AleB in reply togreygoose

Sorry... I have checked K2 MK7... Do you think this may help in addition to Vit D? How much would I need to take?

greygoose profile image
greygoose in reply toAleB

When you take vit D, it increases your absorption of calcium from food. The vit K2 makes sure that this extra calcium goes into teeth and bones and doesn't build up in the soft tissues, causing problems like kidney stones and heart attacks. It's a preventative measure more than anything else. But pretty important. :)

in reply toAleB

Not everyone does well on an NDT + T4 combo, especially if they are poor converters to begin with (in which case adding more T4 does not make much sense). Since both your free Ts are suboptimal it's possible you would benefit from going off levo and taking a higher dose of NDT instead to raise both your free Ts. 1 3/4 grain is still quite a low dose, even though some don't need more. But you apparently do.

silverfox7 profile image
silverfox7

Sounds as though your doctor isn’t aware of this but when taking any form of T3 then results are read differently so yo be ideally medicated then TSH will be suppressed, mine is 0.01, FT4 can fall in its range but FT3 should be in the top quarter but never over. So its similar results you are working towards on NDT

HashiFedUp profile image
HashiFedUp

I’ve had similar recently. Started NDT in June, with 50 Levo as well. But TSH rose slightly and symptoms returned after four months of bliss! So have increased Levo to 75. With 30 NDT. Will see what my endo says - if I’ve done the right thing. I think my TSH needs to be under 1.0 for me to feel better and it went up to 1.7 and I feel awful again.

jjf255 profile image
jjf255

I know this isn't answering your question about adding T4 to your NP thyroid but...there have been TONS of reports about the formula of NP thyroid being changed for the worst over the last 6 months. My husband has been on NP thyroid for some time now and his numbers have gone down hill for the last 6 months. He is going in for blood work this week...by his new symptoms, I suspect his #s aren't going to be good. We are at our wits end not knowing what he should take. He's done well on each NDT until the company reformulates...IE Armour, Naturethroid now NP. We have talked to his Dr. about trying T4 again but this time adding T3. We will see.

in reply tojjf255

A bit OT but curious nonetheless: do you know if all those brands have changed in the same way, or what the problem was in each case? I know that Armour had sucrose decreased and cellulose added and many claimed that affected absorption, esp if taken sublingually. But now I read about problems with practically all brands of prescription NDT, both US and others. What could possibly have happened...??? Have manufacturers commented at all? The only thing I know is that Erfa was reported problematic a few years ago but denied any reformulation.

I'm even more curious as I just decided to give Armour a try, after five years on Thyroid-S and finding the latest batch not to work so well. With the other two brands of Thai NDT unavailable, trying a prescription brand of NDT was my only option or I'd have to switch to a T3+T4 combo (which I might end up doing anyway, depending on how I get on with Armour).

jjf255 profile image
jjf255 in reply to

I'm sorry...I don't know if all the changes in formulation are the same. The only thing I have gotten from Accella about NP thyroid, is that they changed the source of their raw (pig thyroid) product. They don't admit to any other changes. It's really frustrating. My husband has some fairly serious conditions from being on T4 only for years. He has reduced kidney function...high BP...liver function decline. It was only after he found a DR. that would prescibe NDT that all of these functions started improving and improving greatly. Each time there was unavailability of a particular NDT he moved to another, with NP being the last. We are in the U S, so there are other avenues available like T4 plus T3 or compounding NDT. We are not "Spring Chicks" so each time a NDT doesn't work...it takes longer to come back from the decline. I'm taking Thyroid S, but that is a NDT that his Dr. said he is not comfortable having my husband on...he won't say why other then it's not approved in U S. We don't want to lose this DR. I have been up since 4 AM reading up on the pros and cons of what is available to my husband now.

Sorry about the long rant...it's just so frustrating that these drug companies have no regard for patients well being.

in reply tojjf255

Yes, I do understand what you mean! I have tried different brands of NDT in the past and it seems to take longer for the body to readjust every time. I agree it's very frustrating to find one brand that works for you only to end up feeling less well on it after a while...it takes so much time and energy from more important things:-(

If Armour does not work for me, or not that great anyway (given how expensive it is, by far the most expensive prescription brand of NDT) I've been considering giving Thyro Gold a try. I have long hesitated to switch to bovine thyroid as porcine thyroid is said to be the closest thing to human thyroid, but at least it was formulated by a knowledgeable doctor, and many people seem happy with it. I also like the idea that it's sold as a supplement so should not be difficult to source.

jjf255 profile image
jjf255 in reply to

The only comments that I have seen about Bovine NDT is that it usually takes a larger dose then porcine. At least it's an option.

in reply tojjf255

Makes sense if it’s not as close to human chemistry as porcine thyroid...

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