New to NDT Only – WP Thyroid: I have been taking... - Thyroid UK

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New to NDT Only – WP Thyroid

Hypoguy profile image
21 Replies

I have been taking WP Thyroid in combination with Levoxyl for a couple months now – symptoms improved somewhat, but fluid retention wouldn't subside. The doctor wondered if I wouldn't do better just dropping the Levoxyl – so I did almost two weeks ago. At first, I felt pretty great at 2 3/4 grains. Seemed to lose some of the water weight, and I definitely had more energy. But now it seems that my energy has dropped, and the fluid retention has picked up again.

I was told via this forum that maybe I went straight to 2 3/4 grains too quickly (from 2 grains + 75 mcgs Levoxyl) – I asked the doctor, and he wasn't keen on changing anything until next labs. I'm supposed to go in after three weeks for new bloods.

For those on NDT only – how quickly did your energy stabilize, and did it fluctuate? Is this a sign that I'm too low? It's so hard to wait three weeks every time something changes, because I feel like I know much sooner if something is off.

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Hypoguy profile image
Hypoguy
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21 Replies
waveylines profile image
waveylines

I've been on a NDT for 8 years. It did take time to find the right dose level for me but once done have been stable on the same level for years.

The water retention is probably a sign that your body still has some adjusting to do. It might be you ultimately need further increases. However given that it is only two weeks since your last increase it maybe too soon -you run the risk of upping to quickly and then becoming toxic later on -then you will have to start again!!

The good news is that your symptoms improved on the last increase but have now returned a bit -for me this was a typical cycle until I got close to the optimum dose when I remained more stable. Take heart it sounds like from your symptoms that you are on the right track.

Keep posting your results and progress.

lb003 profile image
lb003 in reply to waveylines

I totally agree. I have had the same issue with increasing too quickly. It's now been a year on NDT and I think I am nearing my stable dose as energy is not dropping off so quickly after a dose increase. Do make sure your Vit D Ferritin Folate and B12 are high in range as it was this that significantly helped me tolerate a higher dose.

Hellsy profile image
Hellsy

For me it wasn't a higher dose that helped. Have you had a 24hr adrenal saliva test? If you have low morning cortisol you may benefit from taking part of your dose early, approximately 2 hours before you get up but that may need tweaking. If you read Stop The Thyroid Madness website there's a lot of info on there about it. Paul Robinson created the circadian rhythm protocol and his book is excellent for understanding how this works. It's title is Recovering with T3.

Adrenal stress can cause fluid imbalances. See the STTM info re aldosterone. I have recovered quickly on NDT using Pauls protocol. I also have fluid problems and have found taking half a teaspoon of pink himalayan salt in 2 litres of water daily is very beneficial. Problems returned for me when I got lazy and didn't keep up with it.

I understand what you say about not wanting to wait 3 weeks. One day feeling awful is one day too many and these things feel like they drag on and on sometimes.

Good luck with it.

Eddie83 profile image
Eddie83

I don't understand this. You said you were on 2 grains NDT plus 75mcg Levoxyl. Then you changed to 2.75 grains NDT only. 3/4 grain is roughly equivalent to 28mcg T4 plus 7mcg T3. Using a T3 power factor of 3, that is a T4-equivalent of about 49mcg, significantly less than the 75mcg T4 (as Levoxyl) that you were using.

astorm92 profile image
astorm92 in reply to Eddie83

Wow!! wish I knew you..new to hypo at 67 and feel I will never live long enough to learn what is needed to manage..

Eddie83 profile image
Eddie83 in reply to astorm92

Yeah. Sometimes in dark moments I think the thyroid ignorance displayed by most allopathic practitioners, is actually a conspiracy to get rid of us 'troublesome' patients who are using too many resources. There's nothing worse than someone who does not know how deep their ignorance is.

waveylines profile image
waveylines

Good point Eddie! One grain tablet would give you 38mcg of T4 & 9mcg of T3. My understanding is that t3has a power of four to equate to T4 -or am I behind the times?. Well on that basis one grain would give you the equivalent of 74mcg of T4. That is the nearest equivalent of 2grains &75mcg of Levothyroxine to just NDT is 3grains. Hope that makes sense.

The question is whether you want to take that up with your doctor. Certainly when transferring from Levothyroxine to a NDT it is fine to have the equivalent straight off-you do not need to reintroduce as if starting from scratch.

So Eddies right the conversions across has not been a straight transfer but a bit of a reduction in meds in effect.

Hypoguy profile image
Hypoguy in reply to waveylines

Great points Eddie and Wavey. That actually confused me when the doctor had me switch to less than I was taking. You are both correct that 3 grains would have been the closest equivalent dose -- perhaps he's just being careful?

The question now is: It's been two weeks, I'm definitely feeling undermedicated again -- should I ask him to go up to 3 grains? That's what I would like to do, but the comments about increasing too quickly scared me.

Also, if taking 3 grains, should I take 2 grains in the morning and 1 in the afternoon? I've found that splitting the WP Thyroid pills makes them go bad quickly...

Thanks for all the responses folks!

Eddie83 profile image
Eddie83 in reply to Hypoguy

Most docs are going to insist on 5-6 weeks between dose changes, based on the half-life of T4. And it is true: you can get into trouble increasing too quickly, as I know from personal experience.

Eddie83 profile image
Eddie83 in reply to waveylines

Some years back, when Ridha Arem wrote "Thyroid Solution", he claimed the T3 power factor is 4. But I have seen others on boards use 3, and my personal experience seems to bear out that 3 is closer to what I personally experienced. I drew my personal conclusion from Abbott publicizing the T4-only full replacement dose of 1.7mcg/kg body weight, and the dose of T3 I was on while I was on T3-only therapy (0.82mcg/kg), which would imply a factor of 2. Of course this could be something that varies from patient to patient; perhaps it is actually a range of 2-4. I've never attempted to find out if Arem got his information from a paper, or if he developed a rule-of-thumb from his clinical practice.

waveylines profile image
waveylines in reply to Eddie83

Eddie -thanks for the info. Interesting.....maybe we could do with opening a post on this. Had no idea there was so much diversity on the conversion factor from t4 to T3. Fascinating.....

waveylines profile image
waveylines

I think your doc is probably just being careful. I remember when I moved across to NDT from Levo the doc I saw had me slowly introduce it -I couldn't hack his plan as I felt so ill as for me the transition was too slow -so I must admit I shortened the introduction. To be fair he had effectively got me starting again all over again -far too low for me & I felt dreadful. I think you have to be guided by the doc but also what feel right for you but being mindful that an actual increase in meds should definately be given a window of time.

Splitting the dose is an individual thing. I do split mine but you don't have to if you find taking them in one go works for you. I take four grains split into three -2 grains at 5.05pm (CT3M), 1grain at lunchtime, 1grain at bedtime. I find this way I avoid an afternoon slump & sleep better at night. All as ever is trial and error!! It does mean I have to be careful if taking any vits/ minerals....lol

I didn't introduce the CT3M until I was well established on NDT to avoid any confusion over what effect it was having.

Hypoguy profile image
Hypoguy

I took 3 grains yesterday instead of the 2 + 3/4 -- I blew up like a blowfish. Bloated and retaining fluid. Why would that happen?

I may have felt better on the 2 grains + Levoxyl. In the two weeks that I've tried the NDT only, I've gotten more tired, and I've gained weight. I'm so confused as to what I'm supposed to do.

waveylines profile image
waveylines

Hypoguy. It takes a longtime for the effects of thyroid hormones to kick in. You talk about two weeks -this is a very small window of time. The recommendation is for each change of dose to be taken 4-6 weeks before altering to allow the body to adjust. If you keep changing your dose so rapidly your body has not time to adjust and you can't see the full impact of the dose. It may well be why you are getting strange symptoms. I think your body needs time to adjust. Frustrating I know!!

Hypoguy profile image
Hypoguy in reply to waveylines

I think you're absolutely right – I just need to stick with a dose for around 6 weeks. Have to be patient and let things even out. I get antsy when I feel like things aren't right, especially with the fluid retention (because I can't fit in my clothes and it's super uncomfortable). I'll cool it and just go with the doctor's plan. Will check back in in a few weeks time. Thanks for the comments.

waveylines profile image
waveylines

Yeah I do understand....it's miserable feeling poorly or putting up with symptoms like fluid retention....the slowness of treatment is so vexing cos of course you want to feel better asap -I got soooo frustrated with the slow pace of it all. I was once told that you have to allow the same amount of time you took becoming poorly to getting better!!! Ouch!!!

Hypoguy profile image
Hypoguy in reply to waveylines

Definitely frustrating. What I don't understand is why I'm so bloated and retain MORE fluid when I increase a dose? Is it really just my system adjusting? Am I taking too much? Too little?

It's so depressing to actually gain weight with what should be helping in the weight department. Seems to happen every time. Did you have that issue at all?

waveylines profile image
waveylines

Arggh just lost the whole of my reply to you!!!

The fluid retention is more likely linked to being under medicated. Maybe now you have some 'stuff' in your body you are doing more but your body hasn't caught up yet.

I still get swelling of the feet at times which is an early warning sign for me that I need to tweak my dose upwards -need more in winter than summer.

WP Thyroid is a hypoallergenic NDT so it shouldn't be the fillers causing the problem.

Re weight gain. I never had a weight problem before diagnosis but am afraid it remains an ongoing battle now. Daily exercise to boost the metabolism alongside lowering carbs helps. However until you are optimally medicated you need to be careful not to over do things and should not diet as it lowers your metabolism.

Hypoguy profile image
Hypoguy in reply to waveylines

Thank you for your continued insight Waveylines!

Is it possible that I'm just now feeling the major effects of being under-medicated on my previous dose experiment (which only lasted a little over two weeks)? I'm being hit pretty hard.

The weird thing is, I didn't really start to have issues with fluid retention until the doctors started raising my dose last year. So I'm not sure what the connection is, if any, but I feel like I'm drowning in myself.

waveylines profile image
waveylines

Hmmm sounds very unpleasant feeling -the drowning sensation. 😕😕

Yes you could well be suffering the effects of the lower dose.

However Further up your post aDoctor made a comment about high levels of t4 causing fluid retention. That's never happened to me I must say but everyones different!!

personally I think you need to stick it our for Several weeks. If your fluid retention shows no signs of abeiting after several weeks then maybe it's time to consider T3 only treatment. Paul Robinson found he could not tolerate t4 -only in very small doses and he has written several books on this approach. However I do think you need to give the NDT time to see if it balances out as aDoctor describes above.

It will be worth it in the end!!

Hypoguy profile image
Hypoguy in reply to waveylines

I definitely plan to stick with it for several more weeks. Just trying to plan ahead if things don't improve. I want to be prepared to speak with the doctor about other options.

I'm actually wondering if my body stores excess fluid with high T3 levels. When I tried adding Cytomel to my T4 dose last year, I blew up like a balloon. I guess it's just trial and error with this stuff.

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