My appointment with the PA needed to be pushed back a couple of weeks, so I’m trying to work with the original endocrinologist a bit more. There has been some miscommunication (e.g. I told the nurse that I was injecting twice a week @ 50mg/ea., she told him that I was injecting twice a week @ 200mg/ea…), but he has recently received the lab results showing very high E2 and very low cortisol – though he seems to be sitting on the information. He insists that I have my next lab test (next Friday, 2/18/11) before I have another appointment with him, which is frustrating.
It sounds like I really need to push for hCG in order to get the progesterone → 17a-hydroxyprogesterone → 11-deoxycortisol → cortisol process working again. ( File:Steroidogenesis.svg - Wikipedia )
I am starting to get very worried. I am becoming increasingly more lethargic, depressed, etc. I had to take a day off from work yesterday because I was just too tired - despite getting plenty of sleep - and I am considering taking tomorrow off as well. Today, I am finding it impossible to focus on work; the work that I’ve done so far has been very slow, and I am constantly making mistakes - which is extremely frustrating, as I’m usually a perfectionist.
I have had a number of episodes in the past week where I have become overwhelmed by suicidal thoughts… thankfully, I have a therapy appointment today, and I saw my psychiatrist yesterday (took me off Cymbalta, put me on Lexapro). I think I should call my endocrinologist and mention all of this, but I’m worried that he might start discounting me as having a mental health issue, not a physiological one.
the delays are on of the most frustrating part of treatment, but the extra information the labs provide could be invaluable.
I too struggled to make it through days, weeks, months… not as bad as what you describe, but my job was at risk due to my low performance levels.
You can also go ahead and order Isocort and start self treating immediately - especially if you have a test confirming low cortisol. My wife is on it as are people on STTM. If your symptoms are that severe and the risk is pretty minimal, why not give it a try?
You are also smart to limit the type of information you share to avoid being handed off (like you stated). Ideally you should be able to share everything, but we know that we do not live in an ideal world.
I operate under the theory that the squeaky wheel gets the oil, so I call my doctor’s office a week after my tests to get the results. If they don’t have them, I ask them to check the online system to confirm they are not ready. If they say they only have partial results, I ask them to send what ever they have to me. If not, I follow up in 2-3 days until I get the results in my hand. Yes I am a pain, but if you don’t push, you end up waiting 30+ days for the results that they had on day 10 which is just crazy. I am very polite on the phone and very persistent. I paid for the visit and took my time to go get the tests so I expect to get the results as soon as possible.
Have you found this chart yet? It has some amazing detail which I absolutely love. I only understand about half of it, but still.
www.genome.jp/kegg/pathway/map/map00140.html
So free is actually at the top of the range, but total is still relatively mediocre. Sure, it’s a huge improvement from 151 ng/dL, but it seems like I ought to be in the 600-800 range at my age.
Anyway, I have an appt. with my endo this upcoming Thursday, and I’m going to be insisting on an AI considering my E2 levels were stupidly high.
Well, I’m back. I’d pretty much given up on this whole issue, but now that I’ve become serious about losing weight I’ve realized I absolutely need to get this shit taken care of.
Why? I’ve lost a grand total of 16 lbs. since late May averaging <1500 calories a day, with exercise. That’s just barely over 1 lb per week. That would be amazing if I were, say, a 140 lb. 5’ tall woman. As a 5’ 10" 300 lb. man - not so much.
Am I screwed because my free test is ‘average’? My total is still horribly low. I continue to have all of the symptoms that I had before. The only improvement I’ve found is through use of Adderall (legal, fortunately - prescribed by a psychiatrist), which has managed to give me enough of a boost to my motivation and energy that I’m able to scrape by at work.
I’ll be seeing a new primary care physician this Friday to talk about options, e.g. referral. He’s an acupuncturist and sports medicine specialist, so I’m hoping he’s a bit more open-minded than most (never mind that I’m at least a little bit skeptical regarding acupuncture, I just want to get this shit taken care of). I think I need to have my TT and FT levels retaken, as well as my E2 levels while off of TRT altogether to get a good idea of my baseline before I consider starting TRT again (with or without an AI… hopefully ‘with’).
I really hope this PCP works out, since he’s literally a 2 minute walk from my office and has extremely high availability. I could see him frequently if I needed to.
Tried to get AIs, talked to endo and uro about cortisol, etc. Made absolutely zero progress - the uro had no opinion on the cortisol, the endo took one look and said “it’s within range” and moved on. Both insisted that aromatase inhibitors aren’t for men (the uro even claimed it was illegal to prescribe them for men). This, coupled with losing my job in March, led to me having little motivation to care about this anymore.
I never had pregnenolone checked, so I don’t know about supplementing it. Beyond asking for the test (and being refused), I haven’t put any effort into it.
I understand that starving myself isn’t going to help with whatever medical issues I have, but neither is staying obese. Something has to give - and for me to have any semblance of happiness with my life, I need to be happy with my body. If 1500 calories a day is starvation, I don’t know what to do - I generally don’t lose weight at a noticeable pace at above 2k kcal a day.
For reference, my TSH has fluctuated between 1.55 (11/11/2010) and 2.99 (12/13/2010). My endo, my uro, and two PCPs all claimed it was within range, therefore normal. We know better (symptoms, AACE and NACB recommendations re: the range, etc.), but I’m apparently not a very convincing person when it comes to doctors.
Edit: as for TRT, both doctors wanted me on 200mg T-Cyp EOW. I did 50mg E3.5D (Sunday morning, Thursday night) for just under 3 months before giving up on it. No AI, no hCG, etc.
Your dealings sound all to familiar, I go through the same BS.
You will more than likely need to take things into your own hands a little. Because before you find a switched on doctor many years may pass.
AI like arimidex you can probably source online. I have never used them, but will be trying to make a purchase with them soon. Generic Arimidex on their site runs for $80 + postage. Yes it is expensive but 30 pills will go a long way. In my opinion for the sake of $100 bucks it is worth the risk. They guarantee delivery, but honestly I don’t know what they are like. Just providing you with a avenue you may wish to look at.
Current meds:
Vitamin D3 5000 I.U. (morning)
Adderall 30mg XR (morning)
Adderall 15-30mg IR (afternoon, as needed)
Diet:
Ketogenic (target <50g carbs/day, high fat/protein intake)[/quote]
Do NOT stay on a ketoggenic diet for an extended period unless you want to really fuck up your thyroid. They work well for quick bouts of fat loss, but starving your body of carbs is not the way to go long term.
I think if you kept yourself under 100g carbs/day, that would be plenty low carb to lose weight.
YOU NEED TO FIND A DOC WILLING TO WORK WITH YOU. Do whatever it takes. That is you problem 1, 2, and 3 right now. Taking Test that is constantly aromatizing into E2 is doing no good at all.
I’m really enjoying the keto diet, but I am concerned about the health effects myself. I plan on keeping a close eye on my bloodwork to make sure I’m not on a bad course. As far as diets go, it’s the only one I’ve ever been able to stick to (mostly because I actually feel satiated on keto, whereas simple calorie restriction leaves me feeling starved).
When I hit my target weight, I’m sure I’ll reintroduce carbs into the 100-150g range. For now, I usually hit in the 40-80g carb range and feel physically much better than on a normal or calorie-restricted diet (more energy, clarity of thought, and focus).
As far as ordering meds online… I’m not at the point that I’m willing to do that. I don’t know if I ever will be - the risk seems high.
Thanks for the encouragement to keep going at finding a doc, scj. I really do need to find one. I wish it weren’t so damned discouraging to find so many doctors that aren’t at all interested in working with me (fortunately, my psychiatrist is very willing to work with me - hence the Adderall, which is literally the only medication that has ever had any positive effect on depression for me).
I plan on going to see the doctor tomorrow armed with strong support for me being hypothyroid. One thing that my psychiatrist mentioned, which I think will help, is that she has only ever seen Adderall improve depression by any significant measure in hypothyroid patients (i.e. patients that have low energy due to a physiological condition). I’ll report back after the appointment.
