**Woman Defy patient, very unhappy, need advice/help

[Amberlin]

I started with Defy Medical in March of this year & while the service is good, the treatment is lacking.

I was started on testosterone at .04 & was directed to titrate (increase) up to 1. I got up to .08 before having to titrate back down due to severe water retention. This happens when I increase passed the starting rate of .04. I called to say the testosterone wasn't really doing much for weight loss (I go to the gym 5 days a week & lift & do intense cardio 3-4 times per week) My diet is on point. I don't drink, smoke or eat out. When I called, it was suggested to try DIM, dandelion root, & water weight tea (I mentioned Weightless by Traditional Medicinals which was noted as a good option) I've tried ashgawadha as well, all to no avail. None of these OTC remedies helped at all.

Noted in my original blood work was a concern of possible thyroid issues. My TSH level was 2.7. I asked for a complete thyroid panel because that was my reason for coming to Defy; I saw my PCH who said my levels were "within range", & I knew there was something wrong. I felt bad, as I do now under my current protocol. I was prescribed Liothyronine (generic for Cytomel) through Defy, at an extremely low dose of 5mcg & instructed to titrate up to 20mcg, to feel better. At this point, I'm currently taking 100mcg & still have low thyroid symptoms: cold all the time (it's summer & in my city, the temps are well over 100 daily), low mood, feeling tired upon waking up & "crashing" around 12-2pm, dry skin, increased weight gain (since starting treatment w/Defy, I've put on 20 pounds!!!), constantly puffy face, hoarseness, stiff joints, heavy period, etc.

At this point I'm at a loss as to what I should do. I've tried iodine prior to starting Defy, which did nothing. I am due for labs in a few weeks & a follow up consultation. At this point, I'm thinking of cutting ties with Defy. Any input/direction/HELP is greatly appreciated. While I realize this is largely a forum for men, there is VERY little out here for women. I'm hoping this is a place I can get some helpful feedback from those who have been in a similar situation; feeling frustrated with current protocols, but who also found a solution.

 

[Vince Carter]

I started with Defy Medical in March of this year & while the service is good, the treatment is lacking.

Ha...usually the other way around by my experience.

Can you post all your Thyroid labs? I'd like to see Reverse T3. If that's not there and you had asked for a complete Thyroid panel then no, you're not being treated effectively and have reason to complain. But let's see what you started out with on Thyroid and anything you have after your started Cytomel.

Could be a T3 Pooling problem, could be an iron problem, too. Have you had iron and/or Ferritin pulled?

 

[RLW]

What is the mg/ml concentrstion of your testosterone and how often are you taking it?

If you are only a couple weeks away from getting labs I would get them and go from there. I have been with Defy for a year and they have been nothing but helpful.

Whatever you do, let us know what happens. Although the majority of us on this forums are men, many of our wife's could use the information.

 

[Amberlin]

I haven't had additional bloodwork since starting Cytomel. I am due for follow up labs in a couple weeks. I have not had iron or ferritin tested. I notice Defy doesn't seem to conduct a very comprehensive panel unless asked to do so. Being very new to this, I am not sure what to ask for when I don't feel right. I assumed they were the professionals & would be able to better guesstimate what to look into better than I.


Thyroid panel results:

 

[FeelingLost]

Hi Amberlin, My wife is a Defy patient since last October however she is postmenopausal and has no thyroid issues so I don't know if she can help you.

If you called Defy about your thyroid I wonder why they put you on T cream?
On the Thyroid panel yes you have to ask for it. And you said you did. Its a seperate blood test costing an additional ~240 bucks.
It sounds like there was some kind of mix up.

Men see water weight gain when first starting TRT however it usually passes in a few months. I gained 20# of water.
My wife saw no water weight gain and her TT is 188 the upper range was like 40, and FT 3.8 upper range 4.

She also uses the P and E cream and that one was the hardest to get right. Too much pink and bitchswitch was flipped to full on, haha

 

[ratbag]

Too much pink and bitchswitch was flipped to full on

Are you saying too much progesterone and she gets bitchy?

 

[Amberlin]

My mg/ml concentration is 50mg/ml I take it twice a week (every 3.5 days) My starting dose was .04 which seemed pretty good but I was directed to titrate (increase) up to 1. I got up to .08 & had to titrate down (decrease) due to substantial water retention. My face instantly gets puffy when my dose is too high.

I will update once I have new labs. I think they will be interesting to see.

 

[Amberlin]

Hi Feelinglost. I am using injectable testosterone. I tried the cream prior to Defy & the delivery system didn't agree with me. It was a testosterone/progesterone compound. The same day I used it, I immediately puffed up. My hands & face swelled.

I contacted Defy because I thought they were professionals. I should not have to be recommending to them what labs to pull. I feel as bad now as I did before starting with them. My frustration is this: I'm here chatting with every day users & gaining more information from you all (and thank you for that!) than I am getting from Defy yet I'm paying them. I can continue my current protocol & continue paying only to feel as bad as I did prior to starting treatment. Why continue paying only to gain weight & yield the same results?

 

[FeelingLost]

Are you saying too much progesterone and she gets bitchy?

Her E and P are in the same cream. So we don't know which one flips the switch. She has it dialed in pretty good now. Its basicly 1 click of each cream perday.
On her last blood test 2nd or 3rd consult her P was .6 I have no idea if that is good or bad but Defy was happy with her numbers. They then determined what strength cream was needed only using 1 click to save money.
Her transformation was fast once she got dialed in. Energy, drive, muscle tone, sleep quality, no more night sweats. She could not be happier.

 

[MarkM]

Hi Amberlin,

I am sorry to hear about your troubles and hope they get straightened out for you very quickly. I am not an expert on thyroid issues but my wife has been on thyroid medication for about 20 years so I try to keep up and be a "little" knowledgeable about the matter and I also watch mine thyroid lab results closely. In looking at the labs you posted it looks like to me that your Free T4 at 1.0 is on the low side but more importantly your Free T3 at 2.7 is low and your Reverse T3 at 17.8 is high. All three are within the posted "range" but they are not optimal.

These "ranges" can be a funny thing. Like I stated, you can be within the ranges on the thyroid and still have a thyroid under performing. You should have a ratio of Reverse T3 to Free T3 of at least 20 and your ratio is apprx 15.2. Based on these labs you would also want to look at your thyroid anti-bodies, ATA and TPO. It seems to me that your RT3 may be blocking your Free T3 from the receptors. You should probably check your iron and ferritin as well. Low ferritin can make a huge impact on how your thyroid performs. Your ferritin levels probably need to be around 80 to properly support your thyroid.

It is looking like you might have hypothyroidism but, once again, I am not an expert. However, there are several on the forum that I would consider such and I am sure they will weigh in.

Mark

 

[Amberlin]

That is amazing! From what I understand, E & P numbers are based on a ratio. If they were happy with one, the other was balanced too. I am peri-menopausal & P cream was mentioned but I was leery. How was her weight after starting? Did it go up? That is my biggest fear right now.

 

[Vitamin_C]

have you gone the adrenal route? Perhaps getting a 24 hour saliva cortisol test ordered through Amazon.

 

[Jesse-Defy]

Amber, would you please email me your name and DOB at [email protected] so that I can have my manager see what can be done?

Hormones are vastly complex, and often times the first protocol isn't the right one.

Keep in mind with labs, Dr. Saya tries to minimize the cost while balancing the quality of care, and it's difficult to know what a patient can and cannot afford regarding testing. It seems that getting to the bottom of your symptoms is of the utmost concern, as opposed to cost.

 

[FeelingLost]

That is amazing! From what I understand, E & P numbers are based on a ratio. If they were happy with one, the other was balanced too. I am peri-menopausal & P cream was mentioned but I was leery. How was her weight after starting? Did it go up? That is my biggest fear right now.

Hi Amberlin, I don't know about P/E ratios. I can offer picts of her big 3 before HRT and post 2nd consult bloods.

On the weight question she did not put on water weight when she started about a month into treatments she commented about energy and drive improvements he also mentioned a feeling of well being she had no had in years.

Started walking again, her favorite exersize. About 3 months into treatment her muscle tone really improved.
Now 8 months in we are noticing minor improvement in her skin fine lines in the face fading and less crepe skin.

Here is her Oct 2017 pre HRT bloods:



Post HRT 2nd March 2018 consult bloods where cream % were adjusted.

 

[Vince Carter]

At these times when some one asks for X and they give Y and cite costs, was that conversation even had with the patient? It's a plausible and very good thing to do do for the patient but if you're not given the choice in it then the excuse is a bit disingenuous.

Thyroid should be a 5 test "panel" and include and look at Iron. We know an iron deficiency can obstruct the T4 > T3 conversion. If you're not doing better on Cytomel it would leave me to believe that the T3 is pooling which means it's not getting in the your cells.

TSH
Free T3
Free T4
Antibodies
Reverse T3
Ferritin
Iron, Serum

 

[Dr Justin Saya MD]

I started with Defy Medical in March of this year & while the service is good, the treatment is lacking.

I was started on testosterone at .04 & was directed to titrate (increase) up to 1. I got up to .08 before having to titrate back down due to severe water retention. This happens when I increase passed the starting rate of .04. I called to say the testosterone wasn't really doing much for weight loss (I go to the gym 5 days a week & lift & do intense cardio 3-4 times per week) My diet is on point. I don't drink, smoke or eat out. When I called, it was suggested to try DIM, dandelion root, & water weight tea (I mentioned Weightless by Traditional Medicinals which was noted as a good option) I've tried ashgawadha as well, all to no avail. None of these OTC remedies helped at all.

Noted in my original blood work was a concern of possible thyroid issues. My TSH level was 2.7. I asked for a complete thyroid panel because that was my reason for coming to Defy; I saw my PCH who said my levels were "within range", & I knew there was something wrong. I felt bad, as I do now under my current protocol. I was prescribed Liothyronine (generic for Cytomel) through Defy, at an extremely low dose of 5mcg & instructed to titrate up to 20mcg, to feel better. At this point, I'm currently taking 100mcg & still have low thyroid symptoms: cold all the time (it's summer & in my city, the temps are well over 100 daily), low mood, feeling tired upon waking up & "crashing" around 12-2pm, dry skin, increased weight gain (since starting treatment w/Defy, I've put on 20 pounds!!!), constantly puffy face, hoarseness, stiff joints, heavy period, etc.

At this point I'm at a loss as to what I should do. I've tried iodine prior to starting Defy, which did nothing. I am due for labs in a few weeks & a follow up consultation. At this point, I'm thinking of cutting ties with Defy. Any input/direction/HELP is greatly appreciated. While I realize this is largely a forum for men, there is VERY little out here for women. I'm hoping this is a place I can get some helpful feedback from those who have been in a similar situation; feeling frustrated with current protocols, but who also found a solution.

Amberlin - please contact Jesse as noted in his post above as from this thread I see two points that seem apparent:

- some clarification is needed on dosages being taken (T cyp 0.04 (1/25th of an ml) with instructions authorizing titrating up to 1 (a 25 fold increase and nowhere close to any dosing we’ve ever done). Also liothyronine 5mcg —>20mcg but now up to 100mcg? Clarification needed but more importantly...

- labs and consult for better assessment of what exactly is going on

 

[Sean Mosher]

Looks like they're going to take care of you.
In the meantime, have you had a change to check out Stop The Thyroid Madness and Tired Thyroid?
Lots of good info there and you may be able to get a better of idea of what's specifically going on in your scenario even before your next follow up.

 

[BigBamBoo]

Hi Amber.
My wife has very similar issues. Did Defy follow up with you? Please let us know how this all plays out.

 

[Amberlin]

Hello BigBamBoo. It is nearly 3pm PST & I've not yet heard from Defy. In my experience, this is pretty typical. In the last 3 weeks, I've emailed them now twice & called once. The phone call yielded a result hat someone would call back. Apparent;y the doctor has been gone & maybe that's why I'm not getting a response. Not sure but frustrating all the same.

I will say that once I get to talk with the doctor, I'm pleased with the outcome but getting someone on the phone can be difficult. Thank you for checking in. I'll keep this thread posted.

 

[Deleted member 16042]

The most consistent way to communicate with defy is to call, wait through their jiggy tunes and actually get someone on the phone and don't let them go until you have the answers you need which can be actually provided at the time. In general once you have someone on the phone they really do pretty well helping you out.

Otherwise can be pretty hit or miss via email and seems even more miss leaving phone messages to call back. I really appreciate Defy's care, except the inconsistency with communication, and errors when things are bounced among different people on their staff.