My start on NDT

[WrenchHead80]

Your ferritin looks ok now but your iron serum and percent sat look lowish. ZRT is good. I used them back in the day and the price is nearly the same. Before you increase any thyroid meds I would get that 4 x diurnal saliva tests done if you can do it. If your cortisol is low it would explain a lot of your symptoms and your RT3 problem.

Good to know, thanks. I agree, I was worried about increasing it cause something is going on and felt raising it may make things worse. Should I wait to do the saliva cortisol test intill I know what dose of DHEA and preg I will remain on? As I mentioned in the other thread you are helping me in, I was going to do half my normal dose this week to see if I feel a difference. Should I be on a fixed protocol with everything for a couple weeks before doing a cortisol test?

Do you know if my cortisol is low or high if Defy handles that and with meds?

 

[ratbag]

You can get the DHEA along with the cortisol saliva test at the same time so that would be good to know as well. Defy would Rx what you need providing your labs and Doctor support it, without question. Your high RT3 tells us something is wrong with ferritin and or cortisol. You have low cortisol symptoms and you are not tolerating thyroid meds. I had the same problem and when I was given cortisol suddenly it all worked. I have HPTA dysfunction, I take 30-40 mg hydrocortisone daily. I would try to stay on your existing protocol for a 3 week period before labs.

 

[WrenchHead80]

You can get the DHEA along with the cortisol saliva test at the same time so that would be good to know as well. Defy would Rx what you need providing your labs and Doctor support it, without question. Your high RT3 tells us something is wrong with ferritin and or cortisol. You have low cortisol symptoms and you are not tolerating thyroid meds. I had the same problem and when I was given cortisol suddenly it all worked. I have HPTA dysfunction, I take 30-40 mg hydrocortisone daily. I would try to stay on your existing protocol for a 3 week period before labs.

Thank you for all the info. I will keep everything the same for 3 weeks and order that saliva test and get my DHEA-s re-tested.

I'll also reach out to Defy and explain my plans and make sure they can and will help with whats needed if the results show I need additional stuff. The PA for whatever reason wanted me to stay on this dose in till my regular follow up which is months away. So as long as their fine moving sooner on this,I'd like to do that cause I don't see my thyroid numbers or me feeling better happening on its own with more time.

I'm hoping the cortisol info will be the missing link to fixing my problem. Cause I do feel I am spinning in place and wasting money on the thyroid pills in the mean time...

 

[WrenchHead80]

Well yesterday morning was my kids first day of school so my mind was was all over the place and I forgot to take my NDT. By the time I noticed it was 10am. Leading up to that time I wasn't sweating as much and felt fine which had me wondering what was going on and that's what made me remember I missed my NDT dose. After taking it at 10am within a few hours the sweating started picking up again. This told me that I needed to call Defy as soon as I could cause their is something going on here. By the time I called they said they would call me back today (yesturday) or today. I mentioned I would like to get my cortisol saliva tested and for suggestions on what to do with my ndt dose. They ended up calling me today which I missed the call, but they emailed me to stop taking the NDT and wait till my next trt follow up (which is months away) and to add my FT3 to the labs to see where my thyroid levels are at then (just FT3). They felt my sweating was a sign of Hyperthyroidism. I'm fine discontinuing it if thats what they felt. But they made no mention of trying to find out what caused it or how to fix it or my suggestion about checking my cortisol.

So I called Defy to see what they would say about working with me on doing a cortisol saliva test and what they recommend in the mean time. I felt I was passed off and again told to stop the meds and will retest next follow-up. Well what was the point of starting to pay for a thyroid follow up and the meds to just throw it away. I mentioned members on here said my cortisol could be the problem especially since it was never tested. I told her I get it, stop the meds fine. But shouldn't we look into why they didn't work. The lady put me on hold and spoke to a dr.

Here's were things get interesting. The lady came back on and said we can test your cortisol levels if you want but the Dr said that really has to do with energy levels!! Am I supposed to believe here the Dr doesn't understand cortisol has a impact on if thyroid meds work or not??? She also mentioned the dr felt checking my estrogen would be a better idea. I explained to the lady I have had high estrogen with the previous clinic I used and my symptoms were bad night sweats (soaked bed) and I felt emotional which I have neither symptoms now. I mentioned the day time sweating didn't start till a couple weeks after starting thyroid meds. At first it was very little and it was summer. I mentioned it to the PA at the time of my thyroid follow up and neither of us were concerned. But since that last follow up I now realize it has been slowing increasing ever since. So I felt it was NDT related not estrogen related.

I also mentioned to the lady I've read of members here that said discovering they had bad cortisol levels was the missing link to getting their thyroid problems worked out. It was suggested by a few members here to have it tested to begin with. Which she said I understand and if you want to wait a week of no ndt and call us and tell us how you feel. If you want to run the cortisol test then we can.

I'm worried now I'm not going to get the proper thyroid treatment with Defy and I should just stick with them for my TRT needs only. I don't feel like throwing more money at this with them if its going to be wasted.

What would you guys do?

BTW-> The lady on the phone was very nice and caring and seemed concerned about helping me. I don't fault her at all since shes not a medical person. I also feel Defy has been great with my TRT needs. But I feel very let down so far with my thyroid problem.


EDIT TO ADD:

I finally got my Selenium/Plasma numbers back (that I decided to have run on my own)
Range 23-190 and I came back HIGH at 332

This was taking 400mcg of Selenium every morning with my Thyroid pills. I was originally taking only 200mcg but was recommended here to bump it up more. When I ran it threw the PA at Defy they were fine with 400mcg a day. Glad I decided to have it tested. I'm going to discontinue using it in the mean time and see what Defy says about it next time I call.

 

[MarkM]

Getting too much selenium over time can cause the following:

• Garlic breath.
• Nausea.
• Diarrhea.
• Skin rashes.
• Irritability.
• Metallic taste in the mouth.
• Brittle hair or nails.
• Loss of hair or nails.

Not sure what "getting too much" means.................

 

[WrenchHead80]

Getting too much selenium over time can cause the following:

• Garlic breath.
• Nausea.
• Diarrhea.
• Skin rashes.
• Irritability.
• Metallic taste in the mouth.
• Brittle hair or nails.
• Loss of hair or nails.

Not sure what "getting too much" means.................

I goggled and saw this exact thing. Only one I have is irritability. I'd assume that's being caused do to me feeling overheated, drenching cloths and throwing money out the window. Not excessive selenium. I agree I don't know whats considered too much either and no ones chiming in. I figured to be on the safe side I should discontinue it in the mean time.

On another note I'm feeling tired today since I stopped taking my NDT. I actually took a nap before this afternoon. Think I'm going to look into finding a dr local to address my thyroid issue.

 

[OMI100]

If you are going to try the LOCAL DR route make sure and get a firm response if the DR.;
1. Treats to symptoms and not just ranges.
2. Uses NDT.
3. Does the DR use both NDT and synthetic at the same time if needed.
4. Does the DR use ONLY synthetic T4, or does the DR use a combination of both synthetic T3 and T4 if needed.
I think a lot of the DRs (Endos also) are taught in school to look at lab ranges only. If you are "WITHIN" range they consider you "good to go". Also a number to DRs. think that NDT is the Devil's medicine and do not script it If they DO script it, that means they most likely think outside the box that they were taught in Med school....
My 2 cents....

 

[WrenchHead80]

If you are going to try the LOCAL DR route make sure and get a firm response if the DR.;
1. Treats to symptoms and not just ranges.
2. Uses NDT.
3. Does the DR use both NDT and synthetic at the same time if needed.
4. Does the DR use ONLY synthetic T4, or does the DR use a combination of both synthetic T3 and T4 if needed.
I think a lot of the DRs (Endos also) are taught in school to look at lab ranges only. If you are "WITHIN" range they consider you "good to go". Also a number to DRs. think that NDT is the Devil's medicine and do not script it If they DO script it, that means they most likely think outside the box that they were taught in Med school....
My 2 cents....

Haven't been on here in a while or I would have liked this a lot sooner. I agree with everything you said. I was worried about going local for these exact reasons. Thank you for the check list.

Luckily after a few days of not being on the ndt the tiredness went away finally. I'm still able to be awake and function all day with no coffee which is a big plus in my book. I still have the sweats though but not as bad. They seem to be going away more as time passes. More importantly I don't feel hot all the time and my temp is always close to 98.6 again. As I mentioned in previous post, when I started NDT my temp was always low 97 and if I was lucky reached 98 by the evening.

I think I feel better off the stuff then when I was on it. Not to knock NDT because I'm sure it would have helped if we knew what was causing it not to work well... like checking my cortisol.

I found two Drs local that have good reviews which I know can mean nothing. But figure I should give them a chance with your check list. If it doesn't work out maybe I'll revisit it with defy. I'd probally make a new thread here first though asking exacting what drs at defy do people here have good experiences with a thyroid issue like mine.

 

[WrenchHead80]

Had to get labs pulled for my regular Defy check-up. So I ran all my thyroid labs to see what my numbers look like being off the NDT now.

Notice my TSH has gone up more and so has one of my antibody test ones and RT3. I haven't restarted taking a lower dose (200mcg) of selenium yet since the lab keeps messing up that test. Wanted to confirm my levels came down before starting on 200mcg. For anyone that didn't read it above, the last successful lab of my selenium showed I was over the range (Range 23-190 and I came back HIGH at 332) taking 400mcg a day. I'm starting to think I should just take the 200mcg pill a day and not worry about it?

I've dropped my daily supplementing of iron to only one pill a day of ferretts 106mg elemental iron with a vitamin C pill. I'm assuming my iron is no longer considered low?

On a side note: I read this thread DHEA and Shortness of breath / Asthma and noticed post #3

I'm wondering if my excessive sweating was caused by me supplementing with DHEA and not the NDT? I checked my records and I see I was taking NDT for all most two months with no sweating issue. I started the DHEA (50mg a day) a little over month before I had to stop the NDT because of excessive sweating. I Think it was bad timing that the sweating started at the most humid time of summer here. Even after stopping the NDT the excessive sweating remained for a while though. I dropped my DHEA dose a week after stopping the NDT to 25mg a day after reading here how most don't require so much. The excessive sweating looks like it stopped a few weeks after that but at that time the humidity finally stopped also. Starting to think it was the DHEA.

Either way I don't regret getting off the NDT because I don't feel it was working right based on how I felt, what you guys said about my follow up labs and I never had low temps till I started NDT either. I'm assuming my problems with NDT are cortisol related since its the only thing I never had tested.

Still not sure what to do. Still thinking about looking into those local Dr's. I'm just so turned off with dr's now since I realize most are clueless with TRT and thyroid stuff.

Also decided to stop all DHEA for a few days and see if I feel a + or - difference.

 

[ratbag]

Both your FT3 and FT4 are below 50% and your iron serum is low. With your RT3 at a good spot most would say you don't have an iron or cortisol isssue. But I've seen low iron serum cause problems before. I think you need to find a way to increase your iron serum, you are very close to bottom of range which is just too low. Have you tried synthetics for FT4 and FT3... synthroid and cytomel? There is a lot of NDT that doesn't work. What were you using and how much were you taking. I don't see your labs when you were on NDT.

 

[MarcoFL]

I remember reading a study on that very issue some years back. It might have been part of Broda Barnes research. It stated that the minimum dose is usually 2 grains and that it's exceptionally rare for someone to need less than that. I read so often people Rx'd tiny doses like 1/2 a grain for 6 months and they wonder why it doesn't work. We have the same feedback loop as for testosterone that we need to overcome before we realise any benefit and that's one of the reasons we should increase the dose sooner rather than later. Obviously 6 months is too long to hold a tiny dose. Realistically I believe it should be a week or two max.

You do need to add T4 to your protocol. You should be able to do that over a phone call to Defy without an appointment. I never had a T4 problem until I started taking T3. Once on T3 it drove my FT4 down to the point I had to start taking some. This is quite common for people on TRT. I take 250mcg Synthroid daily because I take T3. If I stop taking T3 I can also stop taking T4 and my FT4 normalizes. Weird huh. But then I end up with low FT3.

just curious how much T3 are you taking with the 250mcg Synthroid are you taking? did you have under active thyroid? I agree most people are way under dosed! I am up to 5 grains of NDT now and feel like getting closer but had hard time getting through my head that i needed that much.

 

[ratbag]

I take 20 mcg cytomel. Some people need lots more T3 like for example Dr. John C Lowe who discovered that using T3 worked had to take 100mcg daily to get normal. This is not unusual.

 

[WrenchHead80]

Both your FT3 and FT4 are below 50% and your iron serum is low. With your RT3 at a good spot most would say you don't have an iron or cortisol isssue. But I've seen low iron serum cause problems before. I think you need to find a way to increase your iron serum, you are very close to bottom of range which is just too low. Have you tried synthetics for FT4 and FT3... synthroid and cytomel? There is a lot of NDT that doesn't work. What were you using and how much were you taking. I don't see your labs when you were on NDT.

My first follow up labs on NDT are on the first page of this thread post #6.

My RT3 has gone up, didn't think that was considered a good spot? I thought my iron was in better shape especially my ferritin levels? Also my TSH has gone higher then it has ever been which isn't a good sign.

I have never tried synthetics. I was taking 1 grain a day of NDT.


I had my TRT follow up with the same PA I've used before with Defy and informed him I was instructed to come off the NDT. The PA wasn't happy about the lady on the phone saying cortisol is only tested for energy. He wanted to know names but I told him I didn't remember. Was nice to know he wanted to make sure people on his end are giving out only the right information.

He felt I should go back on my NDT treatment because he noticed my elevated TSH number now. He also saw my TPO number flared up. I explained to him I stopped taking the selenium because of the test results and maybe that was the reason. He felt 200 instead of the 400 i was taking would be fine. So I started taking 200 a day again.

*On a side note. I found out the reason why my two attempts of getting my selenium retested failed. The lab tech needed special equipment and vials to do it. So I asked does that mean the results I got back showing I was high three test ago are not accurate. She said I would have to ask my dr. (which I took it as you don't want to admit you did the test wrong). So their is a possibility my selenium level was never too high on 400 a day. I still never received the newest results back yet which will hopefully show what my natural level is.

Not sure if I want to restart the same protocol of 1 grain a day. He does feel it helped me. He is fine with me getting my cortisol tested and having a mini follow up to talk about those results and prescribing me the cortisol if I need it. Told him I'll need to think about it, which he was fine with.

I'm thinking I should get my cortisol numbers checked before I do anything. Since it seems to be the only missing info no one has to get a full picture of my case.

 

[HarryCat2]

You had the same reaction to NDT that I did. I switched to a T4 only med and had much better results. The trick is to try and find a T4 med that works for your GI tract. There can be a wide variation in results depending on the composition (inactive ingredients) of the medication. There is even a documented case in the medical literature of a women who did not absorb thyroid meds orally at all and only responded to injected T4. Don't believe the nonsense that the docs tell you that all generic T4 meds are the same in terms of efficacy. You may need to try several different generics or brand names before you find one that works for you.

Also in general only use the 50mcg doses to make up whatever dose you end up with, it is the only dose without any dye, which some people may react to. So in other words if you need 100mcg get that dose by taking two 50mcg pills.

 

[ratbag]

Not everyone can get their FT3 and FT4 corrected on just NDT. In your case your first thyroid labs after being on NDT (post #6) show you were below range for FT4. And your still low despite your FT3 looking good near the top of range. You need to supp Synthroid(T4) + (NDT or Cytomel(T3) to get this balanced. Your RT3 looks ok but with iron so low it's hard to say. HarryCat2 is correct you should try just synthroid alone first and see if it raises your FT3. If it does stick with that if not you'll have to add T3. Good idea on doing the saliva cortisol labs. They will be necessary. Be sure you get the 4 x diurnal saliva labs... this measures your saliva 4 times during the day... in the morning when you get out of bed, lunchtime, dinner time and bedtime.

 

[WrenchHead80]

Sorry I didn't respond sooner. Thanks for the info. I had a break down shortly after my last post here and haven't really been on here much till I started browsing a couple days ago.

I found a new psychiatrist (since I had to go back on zoloft) and I'm now talking to a therapist. They both feel I should look into my thyroid problem and start treatment to see if its a big factor in my mental health.

I'm re-reading this thread to help me remember everything as best as I can understand here and try to find a "good" local dr AGAIN. So far the only great rating dr I could find local that takes my insurance is booked till Jan 2020. So I'm still working on finding a dr.


*** IMPORTANT MESSAGE TO ADD:

I got the results of the last selenium test back. They too were done wrong. With some digging I have found that I was NEVER HIGH with my selenium level. That test was also done wrong.

From gathering information from different sources on selenium, its unlikely to overdose on selenium taking 200 or 400mcg a day unless your eating something like Brazilian nuts that have selenium in them a lot. The test seem to not be that accurate even when done right. So I'm not even going to bother with that test anymore. So I don't want anyone taking selenium reading my earlier post and worrying your over dosing yourself. I do think selenium is a great supplement and I feel better when I'm taking it.

 

[Canada878]

I will re-read the thread when i have time. Just thought i would add something in the meantime

Personally I cannot overstate how much getting my iron/thyroid and testosterone at (near) optimal levels helped my mental health. It’s still an ongoing process but man is the change ever significantly positive. I wish this for everyone. Good luck and keep us updated.

 

[WrenchHead80]

I will re-read the thread when i have time. Just thought i would add something in the meantime

Personally I cannot overstate how much getting my iron/thyroid and testosterone at (near) optimal levels helped my mental health. It’s still an ongoing process but man is the change ever significantly positive. I wish this for everyone. Good luck and keep us updated.

Thanks. I'm hoping working on those will help. I just hope I can find a good dr that doesn't mess me up more. I can't take many more setbacks. Hasn't been easy pushing forward these last months.

 

[Gman86]

I will re-read the thread when i have time. Just thought i would add something in the meantime

Personally I cannot overstate how much getting my iron/thyroid and testosterone at (near) optimal levels helped my mental health. It’s still an ongoing process but man is the change ever significantly positive. I wish this for everyone. Good luck and keep us updated.

What is your iron and thyroid protocol?

 

[Vtail]

Has anyone done the 24 hour cortisol saliva test through the stopthethyroidmadness.com site? Or any other recommendations for how/where to do this test? I would like to get this done before my consult with Defy. My RT3 is high, which I only realized after starting my TRT journey about 2 months ago. Since it is "in-range" my primary care doc never mentioned it. Just trying to have as much info as possible to present to Defy to hopefully streamline the process. I'm hoping that addressing any Thyroid issues combined with TRT will deal with my particular symptoms, which have for years been trouble sleeping, lack of focus and brain fog - some days worse than others. My labs are below.