Back to levothyroxine after many years on Armou... - Thyroid UK

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Back to levothyroxine after many years on Armour, etc

JackieVest profile image
22 Replies

Hello everyone. I'm from the U.S. I was on Armour and other desiccated thyroid meds for about 15 years but reformulations and weird side effects have me believing I just can't tolerate T3 meds anymore and I should go back to T4 only. Every time I try to bring this up in thyroid groups I feel I'm being bullied about my choice and told T4 meds are inferior.

I guess my question is are people able to have good quality of life with levothyroxine? I just filled my prescription and am hoping for the best. I have always been told if Armour isn't working, I need to "take more!" and that doesn't make a whole lot of sense to me . I am starting with 100 mcg of levothyroxine after being on 90 mg of dessicated. I hope this is appropriate.

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JackieVest profile image
JackieVest
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22 Replies
fuchsia-pink profile image
fuchsia-pink

Don't be bullied! I would leave any groups that do this.

You are you. SO what works for you won't work for everyone (and vice versa). It's important to find the best meds for you - and recognise that these may change over time. So certainly, try levo-only if NDT isn't working for you as you want, bearing in mind

a) that over 80% of hypos do perfectly well on levo only, or so we are told (I'm sure a quite a few of these aren't optimally medicated and some will do better still by adding a bit of lio to the mix) - but the point is, this is by far the majority of all patients

b) you may need some patience in finding the optimal levo dose, as you shouldn't chop and change doses too quickly. You should leave at least 6 weeks before changing dose so that your body adapts properly, and only increase or decrease by small amounts so you don't miss your personal "sweet spot"

and c) your levo works best when key nutrients are also good, so that means regular testing of ferritin, folate, vit D and B12, and supplementing whatever needs a boost. Levo should be taken just with water, an hour before or two hours after other food and drink; a LONG way from other supplements (except eg vit D in spray form) - but beyond this, it doesn't matter if you take it in the morning, at night or split the dose

Good luck in finding what works best for you x

SarahJane1471 profile image
SarahJane1471

Groups that push one type of med over all others really are not worth being part of. This group explain that when it comes to treatment we are all individual. I am in Levo only but I am new to this. So far I’m doing well after a wobbly start. Go for it and see how you feel. If it doesn’t work ask on here for advice 😬

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

On any thyroid replacement hormones we need optimal vitamin levels

When were vitamin D, folate, ferritin and B12 last tested

Are you currently taking any vitamin supplements

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

Do you have Hashimoto’s

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

JackieVest profile image
JackieVest in reply to SlowDragon

I do supplement with a plethora of vitamins, etc. Last test my Vit D was in the 80s, Ferritin 109, folate >24 and B12 insanely high at 1700. I believe this is due to me having the MTHFR gene mutation and it's just pooling in my blood. I was on prescription methylated B12 and folate for a while but it didn't make a difference.

I don't have Hashimoto's. I blew out my thyroid around age 20 due to insane exercise and eating disorder. Also my mother and grandmother had low thyroid so I was perhaps susceptible. I do test all the other thyroid markers you mentioned.

pennyannie profile image
pennyannie

Hello JackieWest and welcome to the forum ;

It seems quite strange reading your post as in the UK we routinely are treated on T4 monotherapy and anxious to try alternative treatment options when we feel T4 fails us.

I guess it all depends on what you have been diagnosed with and your currently health status.

1 + 1/2 grains of NDT ( 90mcg ) is approximately 13.50 T3 + 57 mcg T4 :

It is said that T3 is around 4 times more powerful than T4 :

It is also said that 1 grain equates to around 100 mcg :

Of course it's all just a guess as one's ability to convert the T4 into T3 can be compromised by several other factors including by low vitamins and minerals, and any physiological stress ( emotional or physical ) depression, dieting, inflammation and ageing :

So, all you can do is try your experiment and just ensure as smooth a transition as possible by optimising your vitamins and minerals first, especially those o ferritin, folate, B12 and vitamin D.

So, as I monitored my blood pressure, pulse and temperature twice daily when I switched from T4 x 125mcg daily to 1 + 1/2 grains NDT - you'll be going in the opposite direction and hope it works well for you.

JackieVest profile image
JackieVest in reply to pennyannie

Yes, the conversion between NDT and T4 is a bit confusing to me. I was on 88 mcg levothyroxine in the fall and had mildly hypothyroid numbers and asked the doctor to raise my dose and she said I was still "normal." I said maybe technically "normal" but not "optimal." She said that's "good enough." So I fired that doctor and went back to my Armour bottle which has never made me feel all that great and then my alternative doctor suggested a compounded NDT so I tried that at 90 mg. My numbers changed drastically with my TSH at 22.4 and the free T3 and T4 under range. So for whatever reason the NDT is not working for me so I got another doctor to put me back on the levo at a 100 mcg being the 88 mcg got me closer to optimal than the NDT. Crazy I know, back and forth. Yes, in the U,S, we can get the NDT however we have to pay out of pocket for these doctors who don't take insurance usually and in my case the NDT not covered either, so it becomes a very expensive undertaking. Interesting you mentioned blood pressure as mine has gone up when underdosed and I feel heart pounding, when one would think that is a sign of overmedicated. I was very surprised to get my lab results.

pennyannie profile image
pennyannie in reply to JackieVest

What is the cause of your hypothyroidism ?

If you are with an Auto Immune thyroid disease this might explain some of your current symptoms :

OK - just seen you've answered this question somewhere else.

radd profile image
radd

JackieVest,

Welcome to our forum,

Do not be bullied by others telling you one type of thyroid med is inferior to another because we are individuals, and taking more than your known sweet-spot could be very damaging, because any thyroid meds will only work most effectively with optimal iron and nutrients.

There is a reasonable risk that the reason your Armour wasn’t working might also impair your Levo from working, ie high/low cortisol , iron, etc. Therefore, the best chance you can give for making Levo work is to ensure these cofactors are addressed also.

90mcg NDT is roughly the equivalent of 150mcg T4 so you may find yourself under medicated. Retest after 6 weeks including FT3, and post results including ranges (numbers in brackets) for members to comment. Meanwhile it would be prudent to get iron, VitB12, folate and Vit D tested and post these results too.

JackieVest profile image
JackieVest in reply to radd

Right now these numbers are:

ferritin 109 (13-150 ng/ml)iron 95 (37-145 ug/dl)

UIBC 236 (112-347)

iron binding capacity total 331 (250-450 ug/dl)

iron saturation 29% (13-45%)

B12 1790 (232-1245) probably because MTHFR and pooling

Folate >23

Vit D 80s

Yes I will retest after 6 weeks thanks.

radd profile image
radd in reply to JackieVest

JackieVest,

All good. What about sex hormones? Are you in birth control, and/or (peri) menopausal?

JackieVest profile image
JackieVest in reply to radd

Not on any hormones, post menopause. Cannot take any hormone replacement due to past breast cancer.

radd profile image
radd in reply to JackieVest

JackieVest,

You've replied to someone else you don't have Hashi, and had a previous eating disorders. Thyroid hormone is dependant upon a good diet and adequate carbs. The other thing to consider is non-thyroidal illness where other conditions such as inflammation can impair thyroid hormones from working effectively.

.

JackieVest profile image
JackieVest in reply to radd

Yes I have been tested for multiple things. I have elevated ANA and markers for CREST scleroderma for 20 + years but no symptoms and low inflammation markers. I now am very well fed with moderate carb.

radd profile image
radd in reply to JackieVest

JV,

Did you feel well on NDT?

Ahh, such read your reply to PurpleCat71. Yes, some members have complained in the past regarding the changes to the excipients.

JackieVest profile image
JackieVest in reply to radd

I did in the past. Doesn't work for me anymore, either due to change in formulation or me becoming intolerant for some other reason.

radd profile image
radd in reply to JackieVest

JV,

Another essential cofactor is adequate cortisol levels. Your adrenals would have been previously badly compromised with over-exercise and an eating disorder. Have they recovered?

You haven't said why you originally switched from Levo to NDT. If you have genetic conversion impairments and eventually optimising Levo still doesn't cut it for you, you could always consider adding some T3.

Some people see NDT as the better med than Levo + T3 but to me they are much the same, and it is about what's work best your body.

JackieVest profile image
JackieVest in reply to radd

I switched away from levo to NDT because I let some people convince me it was better, even though I wasn't doing bad on levo. But people were saying things like that's because you are used to being sub-par. There are some cultish beliefs out there and I got sucked in.

Regarding cortisol, my morning numbers are fine. The send-away spit test is not available to New York residents, however I did make an appointment with an adrenal specialist, but the soonest I could get in is April!

radd profile image
radd in reply to JackieVest

JackieVest,

Then if you did well on Levo before and you appear to be meeting the criteria known to help it work, you should be fine.

As already said ensure to get FT4, FT3 & TSH tested after six weeks to see where you are at.

Were you doing well on Armour/NDT? Is there a reason you once switched from levo to NDT or were you put directly on NDT? I am asking because it´s common for people to be started on levo, and when that does not work well enough they move on to NDT.If you were to feel less well on levo than on NDT, you could always add synthetic T3 to T4. It all depends on how well you convert T4 to T3.

There have been reports about people feeling strange after various reformulations of Armour, Naturethroid, Erfa and others. So your symptoms could be a reaction to new fillers, or a sign you were taking too much T3.

JackieVest profile image
JackieVest in reply to

I was on levo for 22 years and then switched to Armour because I heard it worked better. I did fine on it til they reformulated it a few years ago. Tried some other NDT but they were either pulled from the market or had other issues. It is possible there are excipients in these products my body doesn't like.

in reply to JackieVest

OK, if you did fine on levothyroxine as well, then you should have no problem going back on it. Good luck and let us know how you get on with it as that could be interesting for others who are considering making the switch!

greygoose profile image
greygoose

It always amazes me the amount of bullying that goes on unchecked in some forums. And I hate forums where they tell you there's only one way to go, and all the rest is rubbish.

Your story sounds so much like mine, except that I never did well on levo only. Felt much better when I added T3, but people were telling me that NDT was the 'only way to go'! And how superior it was because it wasn't synthetic. Well, found a doctor who would prescribe it, and I did feel good on Armour until they reformulated it! And, I too tried all the Thai NDTs, but nothing suited. I became very ill, put on a ton of weight, and just stayed in bed like a beached whale! But, still people were telling me - including the doctor that first prescribed it (he kept saying 'you'll start losing weight any day soon'! lol) - that I just needed to increase my dose. But, when I got to six grains and felt worse than I'd ever felt in my life, one thing led to another, and I discovered I was best off on synthetic T3 only. It was the T4 that didn't agree with me. So, I've been on T3 only for some years now, and wouldn't touch T4 again if you paid me.

We're all different, and there are quite a few people on this forum that do very well on levo only. Impossible to tell how many world-wide are good on levo - I have a healthy cynicism for statistics - but probably a lot! But when it comes to this forum, we know without a doubt. :)

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