24 yr/old Low T Hypothyroid Need Help

[xtitan1]

Age: 24
Weight: 380 pounds
Height: 6'2"

Symptoms:

• Extreme Fatigue!!!!!!! I'm unable to work, exercise, or maintain proper hygiene
• Hypersomnia (12 hour average sleep time)
• Physical activity results in debilitating fatigue the next day
• Extreme Sleep Drunkenness Upon Wake
• Rapid Atypical Weight Gain (210 pounds to 380 pounds in 3 years)
• Red Rash with Yellow Scaling on Scalp, Forehead, Nose, Cheeks (Painful)
• Low Libido
• Striae on Abdomen
• Dark circles around the eyes and mouth
• Above average thirst
• Chronic low grade headache
• Ringing in the ears with no loss of hearing
• Morbid Obesity
• Propensity to want to stay up late and get up late
• Propensity for whiplash
• Possibly weak bones (suffered a complete fracture of glenoid cavity during sleep that resulted in shoulder dislocation)
• Extreme intense itchiness that seems to spring up randomly, sometimes indicated by pinkish color sometimes no visual presentation, happens once or twice a week for about an hour
• Facial ticks and twitches that appear when I haven't gotten more than 10 hours of sleep
• Cold sweats during sleep that often smell very strongly of maple syrup. That maple syrup smell lingers on the linens until I wash them.
• Extremeties become numb and tingly easily

Been Diagnosed With:

• Depression
• Hypothyroidism
• Hypogonadism/Hypotestosterone
• Vitamin D Deficiency
• Obstructive Sleep Apnea
• Idiopathic Tinnitus
• Seborrheic Dermatitis
• Chronic Lyme Disease

Current Medications:

• Vitamin D3 5000 IU
• Armour Thyroid 60 mg twice daily (120 total)
• Selenium Sulfide Shampoo
• CPAP Machine (Pressure of 8)
• No TRT

Current Supplements:

• XtendLife Men's Premium Multivitamin
• Cumanda 30 drops 2x Daily *
• Teasel Root 5 drops 3x Daily *
• Selenium 9 drops
• Krill Oil 2 Capsules 2x Daily
• MinRx 2 Capsules 2x Daily
• CoQ10 1 Capsule 2x Daily
• B-Complex 1 Capsule 2x Daily
• Olive Leaf Extract 3 Capsules 3x Daily *
• Zinc 50 mg
• Oregacillin 3 Capsules 3x Daily *
• Vitamin C Powder 1500mg

*Indicates supplements I've been advised to take for chronic mold/chronic Lyme disease by my Integrated Medicine Doctor

DATE: 6/21/2011 (NO TRT)

Total Testosterone: 151 (310-1010) ng/dL Low
Free Testosterone: 43.5 (47.0 - 244.0) pg/mL Low
SHBG: 13 (13 - 71) nmol/L
FSH: 5.1 (0.9-15.0) mIU/ml
LH: 4.6 (1.5 - 9.3) mIU/ml
Prolactin: 13.9 (<20) ng/mL

TSH: 1.84 (0.45 - 4.50) uIU/mL
Free T4: 1.19 (0.7 - 1.5) ng/dL
Free T3: 3.4 (2.3 - 4.2) pg/mL
Vitamin D: 27 (25 - 80) ng/ML

DATE: 6/5/2012 (AFTER ANDROGEL PUMP FOR 10 MONTHS)

Total Testosterone: 242 (348 -1197) ng/dL Low
Free Testosterone: 12.5 (9.3 - 26.5) pg/mL
SHBG: 10.8 (16.5 - 55.9) nMol/L Low
Estradiol: 18.6 (7.6 - 42.6) pg/mL
LH: 2.7 (1.7 - 8.6) uIU/mL
IGF-1: 220 (116 - 358) ng/mL


TSH: 3.77 (0.450 - 4.500) uIU/mL
Free T4: 1.3 (0.82 - 1.77) ng/dL
Free T3: 2.8 (2.0 - 4.4) pg/mL
RT3: 34.4 (13.5 - 34.2) ng/dL High

[kelkel]

Very possible you may have a pituitary issue so an MRI would be good to rule in/out.
There are possible relationships between D and hypothyroidism: Read this to start: http://www.livestrong.com/article/44...idism-related/ Then visit www.stopthethyroidmadness.com for more info.

As well as D and body weight: http://suite101.com/article/vitamin-...besity-a215046. I would consider doubling your dosage or adding in possibly a prescription vit D called Drisdol which is dosed 1 time a week at 50k IU's.

I'm a little curious why you stopped the agel? Insurance, money or just not sure if working or not. Also curious that after a year of agel your LH level is still at 2.7 and not basically shut down.

There are a few guys here that can really dig into your thyroid issue which is a huge contributing factor to low T. Your TSH is high and a more modern range is .3 - 3.0. RT3 is low which corelates to a lower shbg also. They will respond but weekends can be a little slower here so be patient.

Welcome to the site xtitan. Stick around as more will chime in.

[xtitan1]

Oh wow I never knew about this. Thanks for taking the time to link these 3 articles they were very interesting reads and definitely make me want to address this issue. I will ask my doctor about the Drisdol after I do some research on this.

The story with my stopping the AndroGel, right after that last blood test on 6/6/12, is that my endocrinologist, who I stopped working with because he wasn't very good, was the one who was prescribing it. I am seeing a new doctor and will have a new, higher prescription of AndroGel (5 pumps daily instead of 3) in a couple of days.

However, I'm not sure taking it is the best way to go. I think I may have secondary, not primary, and that a HCG only trial would be good to test this theory. Furthermore, it seems as though my body isn't really absorbing the stuff at all. My testosterone went from 140s to 240s after a year of AndroGel, and my LH hardly moved. It's almost like I didn't even really take the stuff. I 'read somewhere' that hypothyroid patients tend to not absorb topical gels well.

If I decided I did want to direct testosterone and not go HCG only, perhaps it would therefore be better to go to injections?

I am actually now seeing a doctor recommended in the STTM book, which I had read this winter and caused me to go see him. Hopefully this new prescription of Armour Thyroid 60 mg twice a day will get my T3 in the upper normal range.

I'm thinking right now I am going to call up my doctor and ask for:

1. pituitary MRI
2. more aggressive Vitamin D regimen (will mention Drisdol)
3. Blood Work:
-----CBC (several figures were high last time, want to retest)
-----Comprehensive Metabolic Panel (Couldn't hurt?)
-----Lipids Panel (Couldn't hurt?)
-----Vitamin B12 Levels (Since I'm so low on energy I want to make sure these are sufficient)
-----Iron Panel (Want to make sure I'm getting enough)
-----Folate (Want to make sure I'm getting enough)
-----Ferritin (Want to make sure I'm getting enough)
-----Progenelone (I want to see if this is low as it can also cause issues I read)
-----DHEA-S (I want to see if this is also off)
-----Adrenal Stress Index (24-hour 4 Saliva Sample Cortisol Test) (Should tell me if my adrenals are working)
-----Calcium (Want to make sure I am getting enough)
-----PSA (Prostate cancer marker)
-----Iodine (Want to make sure I am getting enough since it can cause thyroid issues if deficient)
-----CD57 (Related to Lyme disease, which I had in 2006, want to see if my body is still reacting to it
-----DHT Want to see what this is since I've been on AdroGel, which is known to cause high DHT levels

4. Possibly new scripts, but I'm not sure what to do from here, HCG?

And thanks for the warm welcome I really appreciate it-

[xtitan1]

Also do you think I have polycthemia (since the RBC, HGB, and ACT are high) or is it due to my AndroGel (even though the AndroGel doesn't seem to be being absorbed?

[kelkel]

Anyone on TRT should be encouraged to give blood on a regular basis. If your levels are to high then your doc can write you a script for a therapeutic draw. Giving blood is good for you and good for society. If your on TRT it's a good idea to do it every couple months.

You obviously have absorption issues. Whether it's related to your bodyfat (no offense, you are a big boy) I'm not sure. Remember agel is applied to the skin. The skin acts as a resevoir for it as it does not disperse immediately. Test is going to do a few things at this point. Its going to turn to DHT pretty much everywhere in the body (via 5AR enxyme) except muscle. Gels are known to blow up DHT levels. It's going to aromatize to estrogen and the more bodyfat you have the more propensity for this to occur, especially abdominal fat. Then a small portion is going to actually go to work for you as "free" testosterone. Normally 2-3 %.

Blood work is your first step. Take a look at the Finding a TRT Physician sticky for a little guidance along with what your already planning on getting. Be sure to check your DHT levels as well as a full thyroid panel and a sensitive estrogen assay. Emphasis on "sensitive" assay.

My initial thought in conjunction with my first post here is to immediately get the BW done and avoid TRT if at all possible. You are to young and you need to find the root cause and fix it. We assume thyroid is playing a part here but is there anything else holding back progress. There are alternatives to TRT such as clomid therapy or HCG/Nolva in effort to jump start your system. Barring a pituitary tumor or testical issue then I'd avoid trt at all costs.

[xtitan1]

Anyone on TRT should be encouraged to give blood on a regular basis. If your levels are to high then your doc can write you a script for a therapeutic draw. Giving blood is good for you and good for society. If your on TRT it's a good idea to do it every couple months.

Yeah but considering I haven't really absorbed the AndroGel, can we really believe the high CBC levels (RBC, HCT, HGB) are due to TRT? Either way, is there a way I can just have blood drawn without donating it because I'm worried since I'm not really sure what is causing my fatigue that I will hurt someone by giving them my blood. Last thing I want is for anyone else on this earth to experience what I'm going through.

You obviously have absorption issues. Whether it's related to your bodyfat (no offense, you are a big boy) I'm not sure. Remember agel is applied to the skin. The skin acts as a resevoir for it as it does not disperse immediately. Test is going to do a few things at this point. Its going to turn to DHT pretty much everywhere in the body (via 5AR enxyme) except muscle. Gels are known to blow up DHT levels. It's going to aromatize to estrogen and the more bodyfat you have the more propensity for this to occur, especially abdominal fat. Then a small portion is going to actually go to work for you as "free" testosterone. Normally 2-3 %.

Haha no offense here brutha. Ever since the fatigue started I've gained a ton of weight, so I'm kind of in the mindset that it's just a temporary symptom and will be returning to normal as soon as I get this figured out. I agree about the AndroGel from the research I've started doing on this forum, so if I eventually decide to do TRT (more on that in a sec), I would probably want to go the injection route.

Blood work is your first step. Take a look at the Finding a TRT Physician sticky for a little guidance along with what your already planning on getting. Be sure to check your DHT levels as well as a full thyroid panel and a sensitive estrogen assay. Emphasis on "sensitive" assay.

Roger that on the sensitive estrogen assay and the DHT. As for the thyroid panel I am seeing a guy who knows his stuff (www.drrind.com) and just recently did a full thyroid panel a month and a half ago, and we decided to up the Armour Thyroid. If I remember correctly, my FT4 was great but my FT3 was low, indicating poor FT4-FT3 conversion. Hopefully taking Armour, instead of straight Levothyroxine (it's generic Synthroid which is T4 only). Whatever issues remain, IMO, are due to something besides thyroid, or at least aren't going to get better because the hypothyroidism has been pretty much addressed.

My initial thought in conjunction with my first post here is to immediately get the BW done and avoid TRT if at all possible. You are to young and you need to find the root cause and fix it. We assume thyroid is playing a part here but is there anything else holding back progress. There are alternatives to TRT such as clomid therapy or HCG/Nolva in effort to jump start your system. Barring a pituitary tumor or testical issue then I'd avoid trt at all costs.

Believe me, having to do TRT or HRT scares the sh*t out of me, especially because I want to have kids (maybe I'll go to a sperm bank before/if I start TRT/HRT) but also I'm just wary of taking powerful anything on a long-term basis. If I can avoid this stuff and feel better, that would make me a lot less nervous, but I'm also unable to work, much less do pretty much anything, without feeling like I'm going to fall asleep.

Now to the most important part: when you say find the root cause, I'm confused. The thyroid is pretty much fixed, my prolactin is normal and I don't feel lumps on a self-exam so it's probably not cancer (I've had this for 4 years almost now), and I've seen like 11 specialists. This hormone issue is pretty much all that's left. Again, I don't WANT to go on TRT/HRT, but it's the only thing left it seems.

[Vettester]

Great advise coming from Kelkel!! Follow his queue ...

[kelkel]

Yeah but considering I haven't really absorbed the AndroGel, can we really believe the high CBC levels (RBC, HCT, HGB) are due to TRT? Either way, is there a way I can just have blood drawn without donating it because I'm worried since I'm not really sure what is causing my fatigue that I will hurt someone by giving them my blood. Last thing I want is for anyone else on this earth to experience what I'm going through. Regardless of the cause, donate. They will subsequently test your blood and make the correct decision about its usefullness



Haha no offense here brutha. Ever since the fatigue started I've gained a ton of weight, so I'm kind of in the mindset that it's just a temporary symptom and will be returning to normal as soon as I get this figured out. I agree about the AndroGel from the research I've started doing on this forum, so if I eventually decide to do TRT (more on that in a sec), I would probably want to go the injection route. Agree with the injection route at this point if you choose not to try a restart, which I would encourage BTW



Roger that on the sensitive estrogen assay and the DHT. As for the thyroid panel I am seeing a guy who knows his stuff (www.drrind.com) and just recently did a full thyroid panel a month and a half ago, and we decided to up the Armour Thyroid. If I remember correctly, my FT4 was great but my FT3 was low, indicating poor FT4-FT3 conversion. Hopefully taking Armour, instead of straight Levothyroxine (it's generic Synthroid which is T4 only). Whatever issues remain, IMO, are due to something besides thyroid, or at least aren't going to get better because the hypothyroidism has been pretty much addressed. Great then. So now to figure out what's holding back your T level. Did you ever get LH & FSH levels pre-TRT and if so, what were they? This leads to the MRI option as a microadenoma can slowly squeeze you out of T. Got personal experience on that one. Also very curious about your E level and if your converting most all your T to E due to higher than normal BF level for you.



Believe me, having to do TRT or HRT scares the sh*t out of me, especially because I want to have kids (maybe I'll go to a sperm bank before/if I start TRT/HRT) but also I'm just wary of taking powerful anything on a long-term basis. If I can avoid this stuff and feel better, that would make me a lot less nervous, but I'm also unable to work, much less do pretty much anything, without feeling like I'm going to fall asleep.

Now to the most important part: when you say find the root cause, I'm confused. The thyroid is pretty much fixed, my prolactin is normal and I don't feel lumps on a self-exam so it's probably not cancer (I've had this for 4 years almost now), and I've seen like 11 specialists. This hormone issue is pretty much all that's left. Again, I don't WANT to go on TRT/HRT, but it's the only thing left it seems.

I mean your still not really sure exactly what is holding your T back so that is what has to be figured out, IMO. If you mean your prolactin is normal so your ruling out a pit tumor issue, don't do that. There are multiple types of microadenomas, not just prolactinomas (unless I misunderstood you there)

Not sure if anything I've said helps but if something leads you in the correct direction then great! Keep us posted on your course of action on this thread please. Very interesting case!

[xtitan1]

1. Good info about the blood drawing, that makes me feel better. Also maybe some daily baby aspirin would help to thin the blood?

2. Can you link me or explain to me what a restart is and what the specific protocol is? Is that where you take a bunch of HCG and then stop and hope your pituitary continues where you left off?

3. I did indeed get my LH and FSH tested pre-TRT, here is a pre-TRT panel:
------Total T: 151 (310-1010)
------Free T: 43.5 (47-244)
------FSH: 5.1 (0.9-15.0)
------LH: 4.6 (1.5-9.3)
------SHBG: 13 (13-71)

Here are my ranges now:

------Total T: 242 (348-1197)
------Free T: 12.5 (9.3-26.5)
------LH: 2.7 (1.7-8.6)
------E2: 18.6 (7.6-42.6)
------SHBG: 10.8 (16.5-55.9)

So my estrogen is really optimal right now despite my huge amount of weight. This is probably due to the fact that there's not that much testosterone available to be converted to E2!

4. When I said my Prolactin was normal, I thought that meant that it means, in combination with testicular self-exam, that I don't have testicular cancer, or is that wrong?

5. So now I'm thinking whether or not the MRI shows anything on my pituitary, it must be a secondary hypogonadism right? My LH and FSH was low pre-TRT as you can see above.

And btw, as to whether or not you're helping, the answer is a resounding yes. Not even counting your advice here, I've read through all of the stickies you wrote and learned a lot. Thank you for taking the time.

[xtitan1]

Just an update:

I have actually requested and gotten almost all of my medical records and labs for my entire life (still waiting on a few items here and there)! It really helps to have all the labs.

Check this out, prior to any TRT:

June 2011
Total Testosterone 151 (310-1010) ng/dL Low
Testosterone, Free 43.5 (47.0 - 244.0) pg/mL Low
Sex Hormone Binding 13 (13 - 71) nmol/L
FSH 5.1 (0.9-15.0) mIU/ml
Luteinizing Hormone 4.6 (1.5 - 9.3) mIU/ml

Now those FSH and LH levels aren't super-low, but I would guess that they should have been higher considering how low my T levels were? Does this indicate secondary hypogonadism, or are they too mid-range to be able to tell definitively?

In other news, I'm currently not on any TRT. I want to have a clean slate so I can do a HCG only restart and see where I get. First, though, I am getting an MRI of my pituitary and hypothalamus with contrast. I took the advice here to heart about not getting into TRT until I'm positive what the reason for the low T is. Hopefully the MRI will show me something, and if not, the HCG restart will provide some sort of enlightenment as to whether I am primary or secondary.

Lastly, I put this in a recent thread about Vitamin D but I thought I would put it here as well:


4/15/2010 12.3 ***Started 1000IU Vitamin D3 daily
5/24/2010 21.7 ***Upped to 5000IU Vitamin D3 daily
6/29/2010 32
10/8/2010 29
12/9/2010 29
6/22/2011 27
1/26/2012 24.9

I'm still taking that D3 dose to this day. As I said in the other thread, Doc thinks this whole entire situation (Hypothyroidism, Vitamin D, Testosterone) being messed up is because of an inadequately treated Lyme disease infection. I was diagnosed with Lyme disease in June of '06 and had the rash and positive blood tests according to CDC standards. I did antibiotics for 3 weeks. He thinks this wasn't enough, and that the disease has been lingering these past 6 years gradually messing me up. This is a very controversial hypothesis (chronic Lyme disease) and I had an infectious disease doctor get visibly irritated at me for even mentioning it to him. I have been taking non-pharmaceutical antibiotics (natural herbs and stuff like that) to fight the Lyme according to my Doc's instructions, but I'm not sure I even buy that this is the reason I'm messed up. I'm thinking I have hypopituitarism due to either a tumor or trauma from head/neck injury (I've taken a lot of neck and head hits, including being starting offensive and defensive lineman in high school).

Anyway, will get back with the MRI results as well as new labs checking everything under the sun.

[xtitan1]

Check out this excel stuff I did. I'm such a dork lol. Also I slept from midnight to 5PM today. WTF

[xtitan1]

I just cleaned up my original post so it would be easier to read. I'm also updating with what I am doing.

Current status: Getting Labs Done In One Week

List of Labs:

• MRI BRAIN W/O & W/DYE (Note: MRI of Pituitary and hypothalamus)
• Total Testosterone
• Free Testosterone
• SHBG
• LH
• FSH
• Estradiol
• Estradiol, Sensitive
• Estrogens Total
• DHT
• ACTH
• IGF-1
• Progenelone
• PSA
• DHEA-S
• TSH
• Free T4
• Free T3
• RT3
• CBC & Platelets
• Comprehensive Metabolic Panel
• Lipid Panel
• Iron and Total Iron Binding Capacity
• Ferritin
• Transferrin
• Nutreval FMV (http://www.gdx.net/product/10051)
• Adrenal Stress Index 24/hr Cortisol Saliva Test (4 Samples) (http://www.diagnostechs.com/Pages/Ad...ressIndex.aspx)
• 2 other kits he didn't tell me what they were

[xtitan1]

Well all of my labs have been drawn I am just waiting on results. These were all ordered by this alternative medicine chronic Lyme doctor I am seeing, but more and more I am wondering if going with this 'fringe' medicine is the way to go.

At the request of my parents, who are paying for all of this, I am scheduled to see an endocrinologist at Johns Hopkins. I also just made an appointment with Shippen, although he can't see me until October. Should I try to figure this out and get going with TRT, or wait until the Shippen appointment and kind of nod my head at these other two doctors?

So to recap I am seeing 3 different doctors:

September: Chronic Lyme guy who doesn't know much about TRT but is willing to work with me
September: Johns Hopkins endocrinologist, I have no idea where he stands on any of this
October: Shippen

Although I realize it's probably too early to ask as I haven't got back my pituitary MRI results or my latest labs yet.

[xtitan1]

MRI results came in. Negative for any problems. I still don't know what's going on. What do I do now?

[xtitan1]

New labs just came in. I'm a little annoyed because the prescription was for Free T3 and they seem to have just done regular T3. Should I complain?

Again, I had done AndroGel 3 pumps daily from August 2011 to the beginning of June 2012. I am now on no TRT whatsoever and have been for almost 3 months now. MRI was negative as well.

My question is what the hell is wrong with me (I can see my low T is now back to where it was before I ever started TRT) but why?

[kelkel]

XT sorry I missed some of these posts. Don't really know how. Anyway, great graphs! I'm sending you my BW to chart up cause damn!

Interesting theory on Lyme Disease. I have no clue on its correlation here but hopefully your docs do. Happy there is no pituitary abnormality. Trust me it's no fun being informed you have a tumor there! Trying to figure out why your low is just baffling. If we rule out the Lymes aspect then we need to look at primary issues. I know you said you self inspected but don't you think that should be done by a professional? After that maybe an effort with HCG could come into play to determine LH responsiveness. If you do end up back on trt I'd recommend an injection protocol.

First though I think you should go through your doctors appointments and gather imput. October and Shippen is really not that far away. Are you also on their waiting list in case someone cancels? Might get you in a bit earlier. I need to spend a bit more time going over all the data you provided and try to add some more imput.

[xtitan1]

XT sorry I missed some of these posts. Don't really know how. Anyway, great graphs! I'm sending you my BW to chart up cause damn!

Interesting theory on Lyme Disease. I have no clue on its correlation here but hopefully your docs do. Happy there is no pituitary abnormality. Trust me it's no fun being informed you have a tumor there! Trying to figure out why your low is just baffling. If we rule out the Lymes aspect then we need to look at primary issues. I know you said you self inspected but don't you think that should be done by a professional? After that maybe an effort with HCG could come into play to determine LH responsiveness. If you do end up back on trt I'd recommend an injection protocol.

First though I think you should go through your doctors appointments and gather imput. October and Shippen is really not that far away. Are you also on their waiting list in case someone cancels? Might get you in a bit earlier. I need to spend a bit more time going over all the data you provided and try to add some more imput.

Hey brother no worries about missing my updates. There are so many posts on this forum it's amazing that you and others are making this kind of effort to help so many people.

I'm not on a waiting list for cancels with Shippen but he had kind of an odd process. I called his office's number and a woman picked up. I asked if he was taking new patients and she said "is this hormone therapy related?" and I said that yes it was. After a brief pause she said he was seeing new patients and could get me in October which was their first available. She then gave me a mailing address saying I needed to send in a letter with my stats like age and weight etc. and my reason for appointment along with my latest labs as well as a hundred dollar deposit and an addressed stamped envelope so he could send me a lab order to get done 3 weeks before my appointment. With all of that going on I think they probably might just say they don't have a waiting list but maybe I should try anyway.

As far as a testicular exam, my PCP does that at my annual check up and the endocrinologist I saw also did an exam and said I was normal. I will make sure Shippen checks me out as well. I also read he does a DRE for all his patients so my visit should be very awkward lol.

The whole situation has me totally baffled. Now that I'm off TRT for a while my LH is back in the mid range at six. Does this mean it's not actually secondary?

I guess it's nice not to have a tumor but TBH I was disappointed when I got that result back because it's been 4 years and I still don't have a causative diagnosis. I'm not even convinced chronic Lyme disease even exists so I'm really hoping for some other diagnosis. It's an extremely controversial topic.

I'm getting hot flashes like a motherf***er it's really bad. Still occasionally sweating maple syrup smelling sweat. Still sleeping 11-13 hours a day and hardly any energy to even move during the day so I'm still unable to go to grad school or get a job or even exercise which I really miss. Also my ALT levels have been consistently high on my CMP for several years. Could this be related?

P.S. I can definitely graph you up! It's the least I could do for all the help! Im on vacation right now in N.C. but will be back at my computer this weekend

[kelkel]

IMO you are not secondary based on your levels as well as the MRI. Your ALT is not through the roof. It can be due to OTC meds, supps, alcohol, etc. It's a liver enzyme found in blood if you're not familiar. Oh, a small percentage of the population just run high naturally. Keep working on your weight also. It all plays a part in this IMO. I know your waiting for this "A-ha" moment when you can put your finger on something and say "this is the cause." Hopefully one of your docs can do that for you but there's no guarantee.

Just keep doing what your doing. Taking charge of your health and learning daily. Personally, I'm very impressed on your proactive approach to all of this. Many would have given up long ago. Prior to seeing Shippen, or any doc for that matter, write down your questions so you don't forget and know what answer to expect if possible. If it's not what you think, ask questions. Nothing worse than walking out of the office and realizing you should have asked a particular question.

[Razor]

Great thread guys!!!Wow!! I just learned a shit ton about this thyroid stuff

[xtitan1]

IMO you are not secondary based on your levels as well as the MRI. Your ALT is not through the roof. It can be due to OTC meds, supps, alcohol, etc. It's a liver enzyme found in blood if you're not familiar. Oh, a small percentage of the population just run high naturally. Keep working on your weight also. It all plays a part in this IMO. I know your waiting for this "A-ha" moment when you can put your finger on something and say "this is the cause." Hopefully one of your docs can do that for you but there's no guarantee.

Just keep doing what your doing. Taking charge of your health and learning daily. Personally, I'm very impressed on your proactive approach to all of this. Many would have given up long ago. Prior to seeing Shippen, or any doc for that matter, write down your questions so you don't forget and know what answer to expect if possible. If it's not what you think, ask questions. Nothing worse than walking out of the office and realizing you should have asked a particular question.

Roger that. I will definitely write down my questions.

As far as the liver thing I don't drink alcohol but I do take a lot of supplements so maybe that's what's going on.

I don't like being a "no I can't" person but I'm really having trouble doing anything about my weight because my fatigue is so extreme. For example, I can't even manage to keep regular hygiene habits or go to the store often enough to feed myself. I'm borderline in need of assisted living. If I had my energy back the first thing I would do is get back to the gym. I love working out I just don't have the energy. Is it unrealistic to think I will be able to start a protocol that will give me more energy? Once I have the energy I bet I could make the weight fly off.

[kelkel]

Hell no it's not unrealistic to think that. That is the goal and I'm sure you will attain it! Call Shippen back and express the need to see him sooner and give then the above reasons. Maybe they can bump it up for you.

[xtitan1]

Okay they put me on a waiting list. He's apparently sending me a bunch more labs to get done before the appointment but the people at his office sounded a little loopy lol so we'll see.

[juice2012]

Have you tried anything for the fatigue like stimulants? I take Ritalin because I have to be able to work to keep my job and thus my health insurance. There are other options like Adderall and Provigil. It's probably better to take stimulants and live life a bit more than it is to sit around rotting in bed. And this is coming from some one who needs 10-12 hours of sleep to function since my issues started.

How about a sleep study, have you done one? Apnea is common among overweight people and that could be contributing on top of all these other issues.

Keep your head up brother.

[xtitan1]

Have you tried anything for the fatigue like stimulants? I take Ritalin because I have to be able to work to keep my job and thus my health insurance. There are other options like Adderall and Provigil. It's probably better to take stimulants and live life a bit more than it is to sit around rotting in bed. And this is coming from some one who needs 10-12 hours of sleep to function since my issues started.

How about a sleep study, have you done one? Apnea is common among overweight people and that could be contributing on top of all these other issues.

Keep your head up brother.

Well you must really know your stuff because I did see a sleep specialist and she ordered an overnight polysomnogram (which is a sleep study) and I do indeed have sleep apnea and use my CPAP machine every night.

After about six months of therapy it was obvious that while this was a contributing factor, my main problem was something else. My sleep doc prescribed provigil for a one month trial and it did not seem to change my fatigue levels or hypersomnia and gave me a racing heartbeat. We then tried Nuvigil which is like the left hand version chemically of provigil but it was the same story.

I asked about adderal or Ritalin for exactly the same reason, but she wasn't comfortable prescribing it to me. I totally agree that wasting away like this is much worse than any potential side effects. As of right now I just keep thinking the answer is around the corner and I don't want to cover up the problem.

Thanks for the support man I really appreciate that.

[xtitan1]

Okay so I just got a letter back from Shippen.

He wants me to stay off the AndroGel and take a 5 day Aromatase Inhibitor Stimulation test. He wrote me a script for Anastrozole 5 1mg tablets and also a whole bunch of bloodwork to complete afterwards.

I was under the impression that an AI would just stop the conversion of Testosterone to Estrogen. Considering my Estradiol has been either low or normal, why would this do anything? I'm confused.

[kelkel]

Not sure. He may be trying to evaluate the actual function or your aromatase enzyme and help to determine a path forward for you. Meaning finding a balance between T & E and other factors you presented to him. Body weight and other factors play a part in this as you know XT. Fat cells pretty much make the aromatase enzyme. A wicked web. I can't really imagine back seat quarterbacking Shippen. Did he order any unusual BW?

[xtitan1]

I hear ya I just wonder if maybe he missed the BW I sent him that had me already at a low normal E2 level. I guess I'll just do what he says but I'm worried about making my E2 even lower.

BW request is below.

[SEOINAGE]

honestly i think your thyroid levels are too low. I don't know if you may need to use t3 only for a while, or just bump up your armor thyroid dose.

[xtitan1]

honestly i think your thyroid levels are too low. I don't know if you may need to use t3 only for a while, or just bump up your armor thyroid dose.

Roger that, we switched to Armour a little bit ago and then bumped it up. It seems it could still be bumped up even further. I was on 45 twice daily, then 60 twice daily, now I may need to go even higher. I am also chewing them because I read on STTM that this increases absorption? Anyway I will discuss at the appointment as well.

[SEOINAGE]

Roger that, we switched to Armour a little bit ago and then bumped it up. It seems it could still be bumped up even further. I was on 45 twice daily, then 60 twice daily, now I may need to go even higher. I am also chewing them because I read on STTM that this increases absorption? Anyway I will discuss at the appointment as well.

for sure bring it up, i mean you are in range, but that doesn't mean your symptoms will be gone. IMO if you replace you ought to shoot for what is shown to be ideal, and see how you feel at it. A lot of docs make people slightly better on numbers, but fail to bump it to ideal even when the person isn't quite feeling good yet.

[kelkel]

I hear ya I just wonder if maybe he missed the BW I sent him that had me already at a low normal E2 level. I guess I'll just do what he says but I'm worried about making my E2 even lower.

BW request is below.

I hear ya XT. Well aware of your E2 level. Hell, you put up better stats than most for sure! Are you able to email his staff with your concerns?

[xtitan1]

I hear ya XT. Well aware of your E2 level. Hell, you put up better stats than most for sure! Are you able to email his staff with your concerns?

No I haven't gotten an email address or anything from them. Do you think I should just do the anastrazole trial as he suggests?

[kelkel]

XT it does scare me that it will crash you. Maybe he did miss your level and is judging using other criteria. Can't hurt to call. You are not the typical unknowing patient. You're self-educated. Express your concern as you don't need another problem to deal with.

[xtitan1]

XT it does scare me that it will crash you. Maybe he did miss your level and is judging using other criteria. Can't hurt to call. You are not the typical unknowing patient. You're self-educated. Express your concern as you don't need another problem to deal with.

Dude I just feel like if I make myself out to be a pain in the ass to this office or like too contrary to just doing what the doctor wants they will just tune me out or tell me to eff off. I've felt like that's happened with a lot of my doctors

[kelkel]

Understood. The caveat may be that most of your other docs don't have his knowledge base. Shiaty dilemma XT.

[xtitan1]

Understood. The caveat may be that most of your other docs don't have his knowledge base. Shiaty dilemma XT.

I think I may just do what he asks. There's no possible way I can feel any worse than I do now. My symptoms are really that extreme that I'm not exaggerating. I don't think I would notice if I got more tired or messed up. Anyway it's only a 5 day trial so it's not like I'm doing it for six weeks.

Also interesting is that his lab form specifically says total testosterone only and does not have a free testosterone option. It also only asks for regular Estradiol and not sensitive.

[xtitan1]

Just an update for you guys. Sorry I haven't been posting in other threads recently. It's just so overwhelming how many people out there aren't getting help. I feel like it's just pissing in the ocean or something to try and help these guys.

Anyway, Johns Hopkins in Baltimore is a top medical program and offers diagnostic services just like the Mayo Clinic. Since it's closer than Mayo, I decided to give it a shot way back in May this year. I gave them all of my symptoms and complaints as well as some labs, and I received back a letter in the mail for an endocrinologist appointment for 4 months later (yesterday).

So I went down there and the guy had an attending physician, which I thought was weird. Isn't that usually for residents? Anyway, he hardly spoke English and kept telling me I need to get gastric bypass surgery. I asked him if he thought he knew what was causing me to have hypothyroidism and low testosterone.

He said that because I originally had a high TSH, that this indicated a properly functioning pituitary so it was probably primary hypothyroidism. Because my LH was normal despite low T, he said that the hypogonadism was secondary. The fact that I have both primary hypothyroidism and secondary hypogonadism is just a total coincidence. I said "okay, secondary hypogonadism means my pituitary isn't functioning, why is that?" He said it was because overweight people tend to have their pituitaries suppressed and they stop working. I've never heard of this. It doesn't even make sense. He's saying my thyroid is being adequately treated because my TSH, a pituitary hormone, is in range, but he's admitting that my pituitary is not properly functioning. He doesn't give any credence to FT4 or FT3 levels.

He seemed to be feeling the heat and called in his attending physician. After 10 minutes this guy came in and introduced himself. He started off with, "so your primary complaint is weight gain, and for that I would suggest bariatric surgery." I said "no, it's the extreme fatigue." He said the fatigue was probably caused by the weight gain because being overweight makes things harder and also causes low testosterone because of high estrogen levels. I know the estrogen levels thing to be true, as opposed to the first guy's theory of being overweight suppressing the pituitary hormones, but my estradiol is actually low-normal. So I played dumb and asked him if there was a blood test for estrogen levels, and he said yes we could do one. I then pointed out that I had labs with me, which he looked at and saw my estradiol level, and then said oh well this is normal but we can't use this because it isn't reliable, despite the fact that three seconds ago he was about to order the same test. He said I probably really do have high estrogen because the "patterns" he's seeing indicated high estrogen levels. I then brought up the point that the fatigue preceded my weight gain in the first place. He changed the subject. I ignored him and repeated myself. He changed the subject back to bariatric surgery. I thanked him for his time and said I'd think about it.

I came to the conclusion these guys have absolutely no idea what they are doing and my trip was mostly worthless.

The one positive thing is that they said my previous endocrinologist, who I had to argue with to re-check me for Cushing's syndrome, did not do a thorough job of testing me. I have the striae on my torso and almost every symptom of the disease. They said Cushing's is a very difficult diagnosis to make and usually 3 tests are done. A 24-hour urine cortisol collection, a two-night salivary cortisol collection, and a cortisol suppression test using dexamethasone the night before a cortisol blood test. They are having me do all three. We'll see maybe I have Cushing's.

[kelkel]

Jeez XT. When do you get to see Shippen?

[xtitan1]

October 10. I think that's my last hope. I really am excited about seeing him I have a good feeling.

[xtitan1]

Just got back from the pharmacy after going to see Dr. Shippen for the first time. He was about an hour and 15 minutes away from me. The appointment lasted about 3 hours.

Don't want to bore you so I will just give you the gist, but if you have questions by all means ask.

He says he suspects the underlying problem must be some sort of virus, such as CMV, HHV-6, Parvovirus, or EBV. He is ordering tests for those. He believes in chronic lyme but does not believe that diagnosis fits my specific case due to lack of arthritic symptoms (common in Lyme) and the lag between when I contracted Lyme and when my symptoms started appearing. I also mentioned the new possibility that it may still be Cushing's and he is eager to see the 3 tests that JH has ordered.

In addition, he is having me do a urine draw from a company called Rhein Labs that does a hormone panel. Link is here: http://www.rheinlabs.com/hp.html

He says that this is really good because it not only shows hormone levels but also shows their "metabolites". He explained it to me that the body may be, for example, overproducing cortisol but then burning it all up, so I may look normal on the standard cortisol tests, but that this panel in that case would show high levels of cortisol metabolites and would clue us in that indeed the body is making too much cortisol.

As far as my testosterone, he thinks I need TRT and suspects primary. My estrogen is currently low so he is not prescribing an AI as of right now. He also wants to start with test only and add in HCG a little later. He put me on 1cc of Depo weekly (.3 ccs 3x weekly).

He said my insulin is 3-4 times what it should be and indicates pre-diabetes. I asked what could be causing this, and he said a combination of genetic factors as well as my low test and obesity, which both contribute to insulin insensitivity. My glucose is under control at the moment, so it isn't diabetes yet, but soon my pancreas, which makes the insulin, will burn out from having to produce so much and then I will be a diabetic. He has prescribed me 1000mg of metformin twice daily. He says this makes the insulin pathway more efficient and should reduce my body's need to make so much as well as prevent diabetes. Furthermore, it will help me lose weight.

As far as my thyroid levels, he said they could be a little more dialed in but he wants to do that after I've been on TRT for a while. He says he actually prefers compounding T4 and T3 in tailored levels according to my blood tests instead of using Armour since Armour comes in a constant ratio which may leave me with either too much of one or too little of the other.

He also said we may need to add some sort of stimulant/ADD medication such as ritalin or Adderall because I have ADD symptoms as well obviously as the daytime sleepiness.

My sleeping routine is so screwed up he thinks that regulating my sleep to a normal schedule is of paramount importance. On my own initiative I ordered a light box, which emits full spectrum light that mimics real sunlight. They make these for people who have Seasonal Affective Disorder but I'm going to try and use it to wake my body up when it's time to be up. I also downloaded a program called "f.lux" which dims your computer monitor according to the current sunrise and sunset times where you live. This way if you are looking at the screen after dark, your eyes won't mistake it as sunlight and make you want to stay up.

Furthermore, he has prescribed something called phentermine 37.5 mg to take upon wake to help me be more awake. He said prolactin goes through a natural rise and fall throughout the day and night, peaking at night, so my high numbers could just be because my sleep is so messed up my body thought it was night when I did the test. I'm not to start the phentermine until doing TRT for several weeks. He also had a compounding pharmacy make me something called low dose naltrexone which is supposed to result my hypothalamus and help me get my sleep schedule back on track.

Lastly he gave me a bottle of Bio Tech D3-50 which are OTC 50,000 IU capsules to be taken twice weekly. http://www.biotechpharmacal.com/catalog/d3-50-50000-iu/

After 3 weeks on the test he will have me redo b/w and call him up.