Extensive blood work results. Prolactin, DHT, Estradiol, Luteinizing way off?

[Dr Justin Saya MD]

Still at square one with this MRI.
6/14/17 - Insurance (really good insurance too) will not cover an MRI that is prescribed out of network. postponed MRI to see if family doctor would prescribe the MRI.

6/15/17 - Family doctor would not prescribe MRI, said it would cause trouble with insurance co. coming from him & that I need to see an endocrinologist to get that prescription. Made appointment with an endo for 7/26... one & a half months away but my first consultation with Dr. Saya is July 11. I had a feeling my family doc who prescribed Androgel to me was a bit miffed that I went outside his realm to Defy medical for help & that was the real reason, so I made an appointment with an ear nose & throat dr. who's medical intake person said he dealt with pituitary gland issues.

6/19/17 - Ear nose & throat doc said he couldn't help me, that the prescription would need to come from an endo or a neurosurgeon for there to be no problems with insurance covering it (At least he gave me my co-pay back as well). Postponed MRI again.

I've called a half dozen endo's for an appointment sooner than July 26... none available. Any recommendations on how to get into see one of these guys sooner? I do not want to delay the process with Dr. Saya any longer than necessary.

Wow, sorry you're experiencing those difficulties obtaining a (clearly needed and warranted) MRI in the traditional healthcare system. Unfortunately, the experience you describe is a microcosm of the vast and fundamental differences between the traditional insurance-based healthcare system and the alternative cash-based, fee for service system.

I would encourage you to either seek other "in-network" endocrinologists (even a distance away) who may be able to get you in more quickly, or perhaps even better (depending on budget) make some calls to local INDEPENDENT radiology centers (i.e. not within a hospital) and inquire about the cash pay price for he needed MRI. I've seen the same MRI performed in a hospital radiology center for $2000-$3000, offered by off-site independent radiology centers for a few hundred cash price instead of a few thousand.

Keep us posted and best of luck.

 

[Dr Justin Saya MD]

Still at square one with this MRI.
6/14/17 - Insurance (really good insurance too) will not cover an MRI that is prescribed out of network. postponed MRI to see if family doctor would prescribe the MRI.

6/15/17 - Family doctor would not prescribe MRI, said it would cause trouble with insurance co. coming from him & that I need to see an endocrinologist to get that prescription. Made appointment with an endo for 7/26... one & a half months away but my first consultation with Dr. Saya is July 11. I had a feeling my family doc who prescribed Androgel to me was a bit miffed that I went outside his realm to Defy medical for help & that was the real reason, so I made an appointment with an ear nose & throat dr. who's medical intake person said he dealt with pituitary gland issues.

6/19/17 - Ear nose & throat doc said he couldn't help me, that the prescription would need to come from an endo or a neurosurgeon for there to be no problems with insurance covering it (At least he gave me my co-pay back as well). Postponed MRI again.

I've called a half dozen endo's for an appointment sooner than July 26... none available. Any recommendations on how to get into see one of these guys sooner? I do not want to delay the process with Dr. Saya any longer than necessary.

As a related aside, this is one of the reasons (of many) I made the professional decision to shun the insurance based sick-patient model of traditional healthcare....I don't want an insurance company dictating what I can and cannot do to help my patients.

When I read the above it infuriates me that multiple doctors KNOW that you need an MRI, but will NOT write an RX for you BECAUSE (and ONLY because) of insurance red tape and regulations. Those doctors are allowing insurance to absolutely dictate what they will and won't do to help their patients even when their own best medical judgment says otherwise. It's absolutely tragic in my eyes and not how I wanted to waste my $250K medical degree!

 

[fiddystorms]

I felt the exact same way going through this. An Endo would love for me to walk in there with the proper MRI! I understand your model completely & am torn between paying out of pocket vs. the damn insurance. I would pay out of network in a heartbeat, but going through purchasing a home right now... I just can't live with paying 100%. my search for an endo appt before July 11 continues. I'll keep your staff posted.

 

[Jasen Bruce]

I agree with Dr Saya regarding the unfortunate limitations that the insurance model imposes on our healthcare system.
I work with a few well known urologists who try hard to be progressive in their TRT protocols, however since they must take insurance as they are tied to academic/hospital institutions they are severely limited in the quality of care they are allowed to give. These doctors spend an average of 5-10min with the patient, the majority of the remaining time spent on that patient is in trying to figure out prior authorizations for treatment in addition to locating coverage for needed tests and prescriptions. In this model, the patient is SOL if they have more than one problem to address with the doctor since insurance will only adjudicate for one issue, therefore the second issue will have to wait until a separate appointment.

I am always quick to correct patients who think doctors are the problem with current healthcare costs and limitations. Reality is, doctors are getting bent over just like patients. They are not getting paid much for their time, and the majority of overhead in the clinic is spent dealing with insurance. Regulations have increased the amount of labor while insurance finds ways to pay LESS or not at all (which is why insurance doctors must schedule 100 people per day...spray and pray you get paid).

Low cost cash options are out there for laboratory, diagnostic, and pharmaceutical products, you just need to know where to look. I have purchased MRI's for myself under $200 cash pay by contacting local imaging centers and requesting their self-pay price. You will be surprised how low some can go (sometimes 10% of the insurance cost!).

Clinics like Defy, pharmacies like Empower, and lab sources like Discounted Labs are great tools to source affordable cash pay health services. More businesses like this will certainly emerge in the future as demand for this type of care continues to increase.

If you understand the healthcare system at every level including cost, you would find that most of us would actually spend much less in our lifetime NOT having insurance and just paying the doctor/hospital /pharmacy/laboratory directly for their services. When a doctor/institution takes cash pay only they can charge much less (insurance inflates the cost big time). We would just need coverage for major procedures which would still cost you less than what you pay each month in a lifetime for insurance that really dosnt cover anything (most dont realize their co-pays and deductibles actually cost more than the cost of the drug/service if paid out of pocket from the right source). But, too many people make too much money off the insurance model so it wont go away. Thankfully we are left with alternatives to source our needs at affordable prices.

 

[Dr Justin Saya MD]

I agree with Dr Saya regarding the unfortunate limitations that the insurance model imposes on our healthcare system.
I work with a few well known urologists who try hard to be progressive in their TRT protocols, however since they must take insurance as they are tied to academic/hospital institutions they are severely limited in the quality of care they are allowed to give. These doctors spend an average of 5-10min with the patient, the majority of the remaining time spent on that patient is in trying to figure out prior authorizations for treatment in addition to locating coverage for needed tests and prescriptions. In this model, the patient is SOL if they have more than one problem to address with the doctor since insurance will only adjudicate for one issue, therefore the second issue will have to wait until a separate appointment.

I am always quick to correct patients who think doctors are the problem with current healthcare costs and limitations. Reality is, doctors are getting bent over just like patients. They are not getting paid much for their time, and the majority of overhead in the clinic is spent dealing with insurance. Regulations have increased the amount of labor while insurance finds ways to pay LESS or not at all (which is why insurance doctors must schedule 100 people per day...spray and pray you get paid).

Low cost cash options are out there for laboratory, diagnostic, and pharmaceutical products, you just need to know where to look. I have purchased MRI's for myself under $200 cash pay by contacting local imaging centers and requesting their self-pay price. You will be surprised how low some can go (sometimes 10% of the insurance cost!).

Clinics like Defy, pharmacies like Empower, and lab sources like Discounted Labs are great tools to source affordable cash pay health services. More businesses like this will certainly emerge in the future as demand for this type of care continues to increase.

If you understand the healthcare system at every level including cost, you would find that most of us would actually spend much less in our lifetime NOT having insurance and just paying the doctor/hospital /pharmacy/laboratory directly for their services. When a doctor/institution takes cash pay only they can charge much less (insurance inflates the cost big time). We would just need coverage for major procedures which would still cost you less than what you pay each month in a lifetime for insurance that really dosnt cover anything (most dont realize their co-pays and deductibles actually cost more than the cost of the drug/service if paid out of pocket from the right source). But, too many people make too much money off the insurance model so it wont go away. Thankfully we are left with alternatives to source our needs at affordable prices.

I agree wholeheartedly with your comments, particularly that the best approach for many would be cash pay for routine healthcare and a CATASTROPHIC policy for unforeseen tragedy.

 

[fiddystorms]

I agree with Dr Saya regarding the unfortunate limitations that the insurance model imposes on our healthcare system.
I work with a few well known urologists who try hard to be progressive in their TRT protocols, however since they must take insurance as they are tied to academic/hospital institutions they are severely limited in the quality of care they are allowed to give. These doctors spend an average of 5-10min with the patient, the majority of the remaining time spent on that patient is in trying to figure out prior authorizations for treatment in addition to locating coverage for needed tests and prescriptions. In this model, the patient is SOL if they have more than one problem to address with the doctor since insurance will only adjudicate for one issue, therefore the second issue will have to wait until a separate appointment.

I am always quick to correct patients who think doctors are the problem with current healthcare costs and limitations. Reality is, doctors are getting bent over just like patients. They are not getting paid much for their time, and the majority of overhead in the clinic is spent dealing with insurance. Regulations have increased the amount of labor while insurance finds ways to pay LESS or not at all (which is why insurance doctors must schedule 100 people per day...spray and pray you get paid).

Low cost cash options are out there for laboratory, diagnostic, and pharmaceutical products, you just need to know where to look. I have purchased MRI's for myself under $200 cash pay by contacting local imaging centers and requesting their self-pay price. You will be surprised how low some can go (sometimes 10% of the insurance cost!).

Clinics like Defy, pharmacies like Empower, and lab sources like Discounted Labs are great tools to source affordable cash pay health services. More businesses like this will certainly emerge in the future as demand for this type of care continues to increase.

If you understand the healthcare system at every level including cost, you would find that most of us would actually spend much less in our lifetime NOT having insurance and just paying the doctor/hospital /pharmacy/laboratory directly for their services. When a doctor/institution takes cash pay only they can charge much less (insurance inflates the cost big time). We would just need coverage for major procedures which would still cost you less than what you pay each month in a lifetime for insurance that really dosnt cover anything (most dont realize their co-pays and deductibles actually cost more than the cost of the drug/service if paid out of pocket from the right source). But, too many people make too much money off the insurance model so it wont go away. Thankfully we are left with alternatives to source our needs at affordable prices.

Good God you hit every point! Well said. Eliminating insurance & Government paid HC would alleviate thisinflated mess we're all in for sure... but it will never happen!

I Found an imaging center that will "allow" me to pay cash for the MRI (don't tell them you have insurance, if they have an agreement with your insurer, they won't allow a "self pay" discount & always check with an imaging center that is not part of a big chain or hospital chain). $550 for MRI with & without contrast! Pretty fair price.

 

[fiddystorms]

What a day! After an exhaustive effort to expedite an MRI, where insurance "mistakenly" hassled me over the prescription I immediately had from Dr. Saya... I had the MRI.

I wasn't out of the machine one minute when the nurse told me that the radiologist wanted me to go to the ER immediately. I was told to get dressed & they would get the radiologist on the phone to speak to me. Groggy & and feeling ambushed, I was a bit concerned at this point. Now dressed, I spoke to the radiologist, who had not even finished dictating the report! He told me that there was a large mass on my pituitary gland that was impinging on my optic nerve & I needed to go to the ER. The radioloist informed me he was contacting Dr. Saya & the endo I was able to see yesterday after someone else's appt. fell through, but had to leave messages.

Sitting in the parking lot trying to gather myself & weigh out the urgency of an ER visit on a Friday evening in Philadelphia, I received a call from Dr. Saya. I cannot begin to tell you how reassuring it is to hear from your doctor so quickly after being ambushed with a vague but ominous prognosis. I cannot thank him enough for his professionalism & timing. 5 o'clock on a Friday, children in tow, he brought the insight & perspective I needed to keep it all in check.

2 hours later, I received a call from the Endo on call at Jefferson University Hospital. Equally professional & insightful, I was told I had a 3.3cm macro Prolactinoma encasing the right internal carotid artery & compressing the optic chiasm. I was Prescribed cabergoline & advised to make appts with eye doc for a full field of vision test & neuro-surgeon to get them involved early so they can be in the loop if the cabergoline is not effective at shrinking the tumor.

For anyone that is researching symptoms, I can tell you that I had none of the significant symptoms that alert professionals. No headaches... no loss of peripheral vision or any vision/dizziness anomalies. My path was driven by low testosterone & loss of libido. I'm 46... I'm not sure if it's normal or not. People get older & lose hair, muscle, 20/20 vision etc. etc. I thought it was normal.

Thank goodness for this forum! I was able to educate myself & was directed to Dr. Saya. Because of this forum, I learned enough to suggest that my prolactin be checked when I arranged the script through Dr. Saya's staff for the blood panel.

My family doctor failed me! It's not entirely his fault per se, it's just that he is not an expert. The initial steps were fine... prescribe Androgel & raise testosterone. but once he discovered my prolactin level was >4700, he should've written a script for an MRI. Instead he referred me to an endo. After I told him it was nearly 2 months wait to see the endo he referred, he could've expedited that with a phone call. After calling his office twice more, I was left with a message from one of the ladies in his office that I need to follow through & see an endo, that there was nothing more he could do & that they couldn't write a script for an MRI because it wouldn't be covered by insurance if it didn't come from an endo.

Found out later, that's simply not true. it's the imaging facility thats doing the work that matters as far as in network coverage is concerned. It was that mistaken belief that wasted more of my time trying to find an endocrinologist who would see me on short notice. I was able to get on the wait list at the endocrinology dept at Jefferson Hospital in Philadelphia. I only found out last night, after that appointment that the prescribing physician didn't matter, it was the facility that was of concern.

Again, thank you DR. Saya for reaching out this evening when I really needed you. Thank you Nelson Vergel for putting your vision together here for us all to benefit from & thank you all (especially Vince Carter) for your guidance & input.

 

[Dr Justin Saya MD]

Fiddystorms - I'm very happy this is finally heading in the right direction for you...and all this before even our first consult! Knowledge is power and allows appropriate direction, now we know what we're dealing with moving forward. Godspeed.

 

[CoastWatcher]

So very glad that this has resolved for you as it has.

 

[johndoesmith]

Wow. If anything, this goes to show the importance of having a great doctor, the proper lab tests, and how being an informed patient can benefit you.

Also highlights the major issues with the insurance based healthcare system, as they would have you waiting forever, not due to being booked up or anything because if that were the case you wouldn't have been able to pay cash for an MRI.

I don't want to think of what might have happened if you stayed within the typical healthcare system, visited your PCP, didn't have prolactin tested, and remained on androgel.

I wish you the best in your treatment and to achieve the best possible outcome that you are able to! You are in good hands with Dr. Saya.

 

[fiddystorms]

Wow. If anything, this goes to show the importance of having a great doctor, the proper lab tests, and how being an informed patient can benefit you.

Also highlights the major issues with the insurance based healthcare system, as they would have you waiting forever, not due to being booked up or anything because if that were the case you wouldn't have been able to pay cash for an MRI.

I don't want to think of what might have happened if you stayed within the typical healthcare system, visited your PCP, didn't have prolactin tested, and remained on androgel.

I wish you the best in your treatment and to achieve the best possible outcome that you are able to! You are in good hands with Dr. Saya.

Thank you. There's no doubt in my mind this would not have been caught if it wasn't for exactly what you mentioned above, great doctor, proper labs & being an informed patient.