Increase in Levo or move to NDT: Hi everyone! I’m... - Thyroid UK

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Increase in Levo or move to NDT

Hi everyone! I’m writing asking for advice.

I was diagnosed with Hashi c. 10 years ago and been on 150 Levo for pretty much 8 years but last Dec my Endo reduce my dose to 125 given high T4 (slightly over range, I believe it was 24 (10-22 range)) despite T3 at the rock bottom with 3.1 (2.5-6.5 range). She said my symptoms were due to over medication. Foolishly I went ahead with her suggestion.

My T4 dropped to 14, T3 to 2.9, I gained over 10kg despite no change in diet and eating healthily (no gluten, no processed foods, lots of veg), I started to suffer with brain fog, extreme fatigue, inability to exercise. I knew things were not right so tried addingT3 and optimised my nutrients (all but D3 and zinc) but things were still going downhill.

Until I had a massive realisation when speaking to a colleague who’s also on Levo- all these 10 years I have been taking my meds before the blood test!!!! I can’t believe no one ever told me not to do that :( So I quickly went for a new blood test without taking meds for 24h, on my usual 150 Levo that I have returned to:

TSH suppressed

T4 - 14 (10-22)

T3 - 2.9 (2.5-6.5)

Well that is pretty different to what I usually get- usually T3 would be same but T4 was always top range or few times slightly over.

So two questions:

Q1- Could it be that I went into undermedicated state whilst on 125 as my T4 level was at 14 after I took meds that morning so realistically was much lower and therefore the symptoms and weight gain?

Q2- What do I do? I have Levo but also got NDT. Would an increase in Levo boost T3 me as well ? Or am I better off giving NDT a shot? With that I am worried I could go into undermedicated state again whilst increasing dose over weeks as these results are low and you have to start small doses?

Thanks so much!!!

37 Replies
oldestnewest

As you've been diagnosed ten years ago I think a trial of NDT might work very well for you.

First it is made from animals' thyroid glands and may be more conducive to the human body than synthetic. It also has all of the hormones our healthy gland would have produced.

I shall give you a couple of links:-

hormonerestoration.com/

hormonerestoration.com/Thyr...

If you decide to change over you can switch to a dose of NDT equivalent, more or less to your dose of levo. Every two weeks you can add 1/4 tablet always taking pulse/temp several times a day for a while anyway until you feel stabilised. If either goes too high drop to previous dose.

(I always forget to say I'm not medically qualified :) but have done the rounds as much as everyone on the forum.)

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Hi Shaws! Many thanks for your reply! Sorry, can I clarify- I can go straight into equivalent NDT dose of Levo 150 and then try adding 1/4 of a grain? Sorry, it’s 5:30pm here in Sydney and I’m after whole days work and full blown brain fog too! 😄

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Yes i.e. 1 grain is approx 100mcg of levo. Usually we take the hormones first thing when we get up with one full glass of water and wait an hour before eating as food can interfere with the uptake of hormones. Others prefer a bedtime dose, in that case if you've had a meal allow about 3 hours for it to digest before taking hormones.

Also allow a 24 hour gap between hormones and blood tests.

I shall also give some links by an Adviser to TUK to help those self-medicating with thyroid problems. He would never prescribe levo only NDT or T3 for his thyroid hormone resistant patients. Copy and paste the tinyurls onto a new page.

Chapter 2

tinyurl.com/ya5blrr2

Chapter 3

tinyurl.com/y7ejh9sh

Chapter 7

tinyurl.com/ycxpz565

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Thanks Shaws, that’s really helpful! I’ll have a read as I’ve been wanting to go on NDT for months. Fingers crossed it will work 🙂

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As you have Hashimoto's you very likely have low vitamin D, folate, B12 and ferritin

Have these been tested, add results and ranges if you have them

Also what supplements you take, if any

Are you on strictly gluten free diet or tried it? Many Hashimoto's patients find it helps or is essential

Ideally ask GP for coeliac blood test first and vitamin tests if not been done

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

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Hi SlowDragon!

I have D3, B12, Iron, Selenium, Iodine, Zinc, Iron Studies done regularly every 6-8 weeks. All is optima (upper range) but D3 and zinc which are at the bottom of the range - I supplement zinc still but can not tolerate D3, it affects my bladder and kidneys. I also take B complex and selenium. All my supplements are from Thorne free from nasties.

I have been gluten free for 8 years and don’t eat dairy either, nor anything processed. I know the ins and outs of what to do / not do as read tons of books and articles and tried close to everything. I just need some advice on dosage as do not have GPs or endo support so this forum is my only option to get some advice 😔 I think I just really screwed by taking Levo before my test all these years 😔

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Have you tried adding magnesium supplements first before starting vitamin D

easy-immune-health.com/magn...

Or a vitamin D lamp is another option (not cheap)

I couldn't tolerate vitamin D supplements initially. More on my profile

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I haven’t heard of either the magnesium approach or the lamp before, very interesting, I’ll read on, thank you 🙂

It’s a strange one for me as living in Australia I would have hoped for better D3 result as I do get in the sun quite often 🙂

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If you swim or shower within 48 hours it may be that vitamin D is washed off.

vitamindcouncil.org/washing...

articles.mercola.com/sites/...

More about magnesium and vitamin K2 Mk7

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Many of us in UK use Better You vitamin D mouth spray as it's often easier to absorb in mouth, especially with Hashimoto's .....the vitamin D comes from lanolin off Australian sheep

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Increasing your levo will also increase your FT3, yes. The question always is : by how much? But, worth a try before you turn to NDT. :)

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That the million dollar question 🙂 not sure how much room I have there really, long way to go from 3 to 6 with only 25mcg 🙂

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Well, your FT4 is under mid-range, too, so it's much too low. You have plenty of room for a couple or three increases.

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I haven’t had an increase in so many years I really don’t know what to expect 🙂 aaah I’m torn now! Not sure if to stick with Levo or try NDT. I’m really scared to mess things even further if NDT goes wrong but then there are so many happy stories and I guess I’d never know if I not try! But also my Reverse T3 is in top upper range and I worry if will shoot up. Can’t win! 😁

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That is doubtful, because it's not your FT4 level that is causing the high rT3. Have you had your ferritin tested? Do you have an infection? Are you on a low-calories diet? Those things - and many others - can cause high rT3. But, it's not a tragedy if it does shoot up. It's doubtful that it does any harm.

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Yes Ferritin is all good after I had an IV and sitting at 80 currently. No infection, antibodies are down considerably to 60 and 120 from so over the range that they didn’t give me any actual number just >1300, but yes I used to diet a lot and very low cal at times in fact, also I’m a serial meal skipping offender 🙁 I think maybe I give Levo another shot, I’m just a bit scared of NDT, really can’t afford to mess things even further, I’m running out of clothes I can fit into! 😥

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Have you considered adding small dose of T3. Easier to adjust dose. Can start with tiny dose

NDT can increase antibodies for some

thyroidpharmacist.com/artic...

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Yes, I have tried in the past but I haven’t seen an improvement 😞in Australia only one brand is available, Tertroxin and it has lactose in it which I’m intolerant to so maybe that’s why it didn’t agree with me...

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Well, at least try levo until you get your FT4 up to about 19, and see what that does to your FT3. If the FT3 is still low, then you're going to need some form of T3 - either adding straight T3 to your levo or NDT. But, given your FT3, I don't really see how you could mess things further...

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I think I’m going to go with that approach greygoose 🙂 already on 175 today 🙂

I looked through my old results and in November I was at T4 27.0 and T3 5.0 so it looks like higher amounts on T4 do convert to T3 in my case. It was much higher result then my usual level of T4 (18-19 almost always) and it’s a big shame my endo did not question this but simply told me to drop the dose. I’m thinking that I’ve been undermedicated for all these years because of the skewed tests each and every time.

Not sure why this particular ready in Nov was so high all I can think of is I switched brand of Levo as Letrox is not available in AU so I was given Eltroxin. Maybe that formulation agreed more with me and boosted the results. If anything I was probably nicely in range then (T4 27 minus the inflation of taking the meds that morning, T3 at 5) What do you think? Also now I have new question, which brand shall I take, Letrox that was my usual brand or Eltroxin that made that boost? too many questions! 😂 thanks so much for your help!! I don’t know honestly what I’d do withou this forum...

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I'm not sure it can have been the brand that caused the difference. But, I can't think anything about the results without the ranges. Sorry.

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Ok with ranges 🙂

Before brand change: June 2017

T4 18 (10-22)

T3 3.8 (2.5-6.5)

TSH suppressed

After brand change: Nov 2017

T4 27 (10-22)

T3 5.0 (2.5-6.5)

TSH suppressed

After dose reduction: Feb 2018

T4 13.2 (10-22)

T3 3.3

TSH 3.12 (0.4-3.8)

With the above I freaked out as things were going really bad and switched to T3/T4 combo.

After Levo+T3 (100/20): April 2018

T4 10.4

T3 5.1

TSH suppressed

All tests were done after taking medication in the morning so T4 will be inflated for each reading. Weigh gain over 10kg since January whilst on healthy diet and feeling awful 😭

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Well, the weight gain isn't surprising due to the low FT3 - the most important number. Even at 5.1, it's only just over mid-range. Did you also take your T3 before the test in April? If so, you have a false 'high' T3.

But the difference between the brands is the fillers, not the hormone itself. So, a different brand wouldn't make your FT4 suddenly go high. That's more likely to be due to the Hashi's.

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Yes, I did take T3 before the test in April 😕 I’m already on 175 of Levo today so will see where that takes me. I really want that weight off, it feels awful, I can’t fit into my clothes 😓

Thank you for your help greygoose and everyone else! As of this latest revelation I’m honestly giving up on endos and paying money for substandard help.

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I don't blame you. They don't have the foggiest idea what they're doing, and really mess people up.

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Honestly, it took me 4 years to loose this weight and in one dose change and 6 months I am back to square one. I just want to cry 😓

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I understand. I have a wardrobe containing cloths varying in size from 42 to 56 (French sizes)! Something for every weight-gain/lose occasion. All my adult life I've gone up and down in size, and it's totally out of my control.

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We just have to accept this reality I suppose... even though so unfair.

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As I always said to my kids "who told you life was going to be fair?" It isn't fair for most people, in one way or another. We just have to do the best we can to get all our ducks in a row - hormones, nutrients, etc. - and hope for the best. :)

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I’m hoping right now ☺️ fingers crossed for some improvements!

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I hope so, too. Keeping my fingers crossed for you. :)

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Before going over to NDT I would get your bloods in range with Levothyroxin see how you feel. NDT isn’t always the magic bullet.

Can transform some but not others. It can take quite a bit of experimenting to get the correct dose and brand to suit.

The 1 grain is equal to 100 of levo isn’t always true either.

Talking from experience.

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Hi NickP1, thanks for your reply! It’s great to hear other people experiences and advice, it definitely helps to make own decisions🙂

I think you’re right and I’ll go ahead with an increase in Levo first and see where this takes me. I mentioned to greygoose, after switching brands of Levo last year my levels shouted with T4 27 and T3 5 so looks like more T4 does converter nicely in my case. Shame my endo didn’t question that increase and dropped my dose which made me ultimately hypo as I have been taking blood test after taking morning Levo all these years so the readings were always inflated 😭 what a mess 🙁

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Two things to suggest

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Often gives different results on apparently identical dose.

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Thanks SlowDragon!!! I will keep that in mind going forward. Hopefully a dose increase will sort things out 🙂

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Your most recent results from 3/04/18 on 100 Levo and 20mcg T3 shows very low FT4

Many Endo's mistakenly reduce T4 when starting T3. For many of us that us not correct. We need good levels of FT3 and good levels of FT4.

I had same change made - didn't improve till put Levo back to 125mcg. For me FT4 needs to be at least mid range and FT3 high in range. Obviously we are all different. So it's only a suggestion. I have Hashimoto's, gluten intolerant and DIO2 gene

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And what’s more, this T4 result is inflated because I took my medication before, it must have been under range in fact. Oh dear, that’s probably why T3 attempt didn’t work for me.

Thanks you very much for your help Slow Dragon, really really really appreciate it. I honestly would be lost without this forum 🙂

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You have to ignore the low TSH on T3. Just look at FT3 and FT4

Taking last dose of T3 twelve hours before test

Levo 24 hours before

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