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Post by Karen on Mar 14, 2012 6:08:41 GMT -5
I'm glad you're working with a practitioner that's willing to figure things out! Are you treating your thyroid?
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Post by DeAnna on Mar 14, 2012 15:44:34 GMT -5
Not treating the thyroid yet. The ND says that we need to look at my adrenal function fisrt. Apparently, if you have poor adrenal function, it can make you feel worse (shaky, hyperthyroid- like symptoms, etc) when you start to introduce thyroid replacement. Karen, did you notice a differnece in your metabolism when you got this all figured out? Mine has come to a screaching halt. Really bums me out. The ND says there is no magic pill...... I wish there was
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Post by Karen on Mar 14, 2012 16:50:57 GMT -5
No change in metabolism just yet... But I'm not on the correct thyroid dose yet. I stopped most adrenal supplements as they didn't do anything, but I'm trying one new one. I've pretty much given up on those at the moment... There's a whole thyroid thread and adrenal thread - feel free to pop over!
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Post by DeAnna on Mar 14, 2012 16:59:16 GMT -5
Oh yeah, good idea. I was just reading some of the old messages from you (bout a year ago). Wow, Ive come along way..... I just need to remember that. Im not in pain right now and not nearly as miserable as I was last year at this time. There is a website I like: www.stopthethyroidmadness.com its super informative also a book that has been very helpful with supplements and diet changes: The Ultramind Solution. Written by a Functional medicine doc. It talks about hormones, thyroid function, statins...everything. Its tough because for every alternative medicine approach you hear about, there is a conventional medicine article or post that discourages those approaches and I have heard good arguments to both sides. And, some things might work for others but not for me. The tests and supplements can be so expensive that it is hard to take the leap fo faith sometimes. What has made the MOST difference for you?
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Post by Karen on Mar 14, 2012 17:23:35 GMT -5
I found STTM to be very helpful, too! I bought the book as well. Great minds think alike, right? After all I know now, it's hard to go back to the conventional medicine approach. I read the articles poo-pooing the alternative approaches and I can poke holes in them now because they never seem to have the complete picture or even accurate information! Although I do believe there's a time and place for conventional medicine, I prefer do start with the more holistic approach first. Luckily, I have a doctor trained in both! All the thyroid, hormones, etc. are so connected that it's hard to somehow know where to start. If I had to do it all over again, I'd start with the thyroid because that had the biggest impact so far. I feel like I have my life back, though it's not 100% yet. I'm finding that my hormone levels are improving as a result, so had I done thyroid first, I don't know that I would have needed the bio-identicals to the extent that I did. But, that being said, bio-identical progesterone was, by far, the best at reducing my pain (with the exception of diet changes). But, yes, I agree - tests and supplements cost a fortune. I have enough budgeted these days so it's not as much of a stretch, but there are still some times that I question my doctor on some things and postpone tests that I don't feel are worth it at the moment. I'm now at the point where I'll try something for a few months, but if I don't get results or see any sort of improvement, I'll stop it and move onto the next thing... I'm impatient! I'm glad you're in a much better place now, though! Isn't it cool to look back and notice the progress? What's your next step? Has your practitioner discussed bio-identicals?
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jem
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Post by jem on Apr 2, 2012 9:52:50 GMT -5
Went to a new doctor, integrative. Had all the blood tests. Estrogen dominant. Hypothroid. He does not believe I have endo . This is a first!. He put me on 25 mg of progesterone. Compounded bioidenticals and armour for thyrod 2 months ago. No change and I feel lousy. He reduced it because my estrogen dropped so low and my thyroid did not respond. Still feel terrible. He says I am super sensitive. He put me on a protocol for depression. I took a few supplements and was going to throw up. tried it the 2nd day say thing. Now I am not taking anything because he is on vacation and his receptionist said just stop everything if you want. The pain is getting worse and is daily. I really am so fustrated. I really don't know what to do. Wanted to try a different doctor because western med I had laps, hysterectomy and hydrocodone which did work. I am just baffled because he does not think this is endo and does not seem to want to treat that. Now he just thinks I am depressed. Well.. who wouldnt be
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Post by Karen on Apr 2, 2012 10:41:25 GMT -5
Hmm, first off, if you're hypothyroid, I'd start working on that prior to working with the hormones. I did it the other way around and spent a good year+ trying to figure out why my hormones weren't right. If your thyroid is a mess, fix that first as your hormones may straighten themselves out on their own!
You said you feel lousy. Can you describe in a bit more detail? I'll admit - NaturThroid (very similar to Armour) made me feel like ass. Can you get your thyroid levels re-checked? If it were me, I'd want to see a minimum of TSH, free T3, free T4, AND reverse T3. If you're feeling not so good on armour, it could be because of reverse T3 so that's a critical one to get checked! Your thyroid can royally mess with pelvic pain, too, so it's critical to get to the bottom of it! Took me a looooong time to make some progress and I had to really direct my doctor as to what I wanted to do, even though she's a non-traditional doc. Pop on over to the hypothyroid thread if you'd like, too!
Trust me, I've been there and can really relate! It's tricky to figure it all out, but once you do, it's pretty cool!!
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jem
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Post by jem on Apr 2, 2012 11:22:41 GMT -5
Hi Karen: I had all the thyroid tests done that you mentioned. He started me on a dose of 30 mg and then bumped it up to 45 mg. When I say lousy. I mean that my pain has not changed. I still suffer from the pelvic pain and some days are worse, headaches and low energy as well as mood, low back pain and pressure that rises up and makes me feel sick. This has not changed. He was describing so many supplements that I really got stressed. Kind of like I want to take one thing at a time. With too much in the mix, you don't know what is working and what isn't. Just to give you an idea. Estradiol was at 102.4. Now at 19.1. Progesterone was at .3 now at 1.5. Tsh was 4.71 now 6.73. T3- was 3.0 now 3.6. T4 was 1.13 now 1.24. Also the blood markers for inflammation indicated alot of inflamation in the body. Over 20 years I have fought with this pain.
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Post by Karen on Apr 2, 2012 16:34:32 GMT -5
Would you mind either posting the ranges of your thyroid test results or sending them to me as a PM? It's hard to tell what's normal, low, and borderline without knowing the ranges. Did you have reverse T3 tested, too? Any chance you're on iodine supplementation, too? Your TSH raised after being on thyroid hormone and it can sometimes be caused by iodine.
As for your hormones, did he test them at the same time during your cycle each time, or on different days of your cycle? That's a big drop in estrogen and I wonder if it's due more to testing in a different time in your cycle. Regardless, you likely won't feel instant pain relief on bio-identical progesterone. Like BC, it can take a few months to kick in, and unlike BC, the dose may need to be adjusted a bit to get the best dose.
I'll admit it's not easy to get everything regulated - it can take some patience and some trial and error. However, it has some pretty cool benefits over time.
In the meantime to help with pain, have you ever looked into pelvic physical therapy? Surgery and meds can only do so much, but pelvic physical therapy can help repair all the over-correction your body is doing to cope with the pain.
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Post by latika on Apr 23, 2012 12:57:08 GMT -5
I am thinking about changing my Visanne pills for natural progesterone. Is anyone here that uses only natural progesterone under the supervision of a gynecologist? Does it work?
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Post by redwood on Apr 23, 2012 15:43:34 GMT -5
Hi Latika, I posted information about this under the Visanne thread. I am someone who has taken both, but for me the Visanne works much better. But definitely the bio-identical progesterone did work for me, at least for a while. Just not as completely as Visanne. I described in my Visanne post why I thought it didn't work as well for me. If you want to switch, you'd need to go off the Visanne for a month and get your hormones tested to see where they are. Then they can see how much progesterone to prescribe for you. In this topic, you can see the whole progress of me (and Karen) and some others who have taken it.
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Post by redwood on Apr 23, 2012 15:47:14 GMT -5
I just looked at a post of my on page 1 of this topic and I stated that my blood test showed I had slightly high estrogen and a bit low progesterone, but when I looked at the blood tests results I still have from then, it shows normal but lower end estrogen and normal on the high end progesterone. So why did my dr. from back then tell me something different? The range is on the blood tests results, so I can see it right there. That's odd.
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Post by Karen on Apr 23, 2012 17:41:59 GMT -5
I have used only progesterone under my doctor's guidance and it mostly eliminated my daily pain. It took a while to find a dose that worked and at one point I may have been on too large of a dose. In trying to pinpoint what was causing what, I went off of several of my various supplements and drugs to determine what was really going on, and progesterone was one of them. Surprisingly, I've had very little pain since, although a few little niggles started recently. Granted, I'm working on some other related issues as well, but still, I'll take it!
I just recently (just the past week or two) went back on a lower dose of progesterone. This time I'll take it 2 weeks on / 2 weeks off. Before I was taking it from day 14 to my period, which could sometimes last a long time as I have completely irregular cycles.
All in all, I had a good experience with it and will continue to take it for as long as I need it. I really recommend working with a doctor knowledgeable in BI hormones. I always suggest women get tested to understand their baseline. You'll most likely need to be off of any hormones for at least a month or two to get it out of your system and get a true reading. It may take a bit of tweaking - it's always best to start low and move up slowly - but once you hit the sweet spot, it can do some pretty amazing things! If you start too high, you can feel really tired and sluggish. The goal with BI hormones is just to replace what your body needs, not to overwhelm it. The key is to BALANCE hormones.
I hope you have success! If you have any questions along the way, I've done a bit of research on it and if I don't have an answer, might at least be able to point you in the right direction!
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Post by latika on Apr 24, 2012 6:59:30 GMT -5
I'm concerned about getting off Visanne for a whole month, because I don't want to risk it. After my first laparoscopy I took birth control pills continuously for 6 months, then I stopped and the first month off I started to feel the same pain again and therefore they did another laparoscopy because of the cysts. I don't want to go through that again, so I don't think I will get off Visanne just like that. As far as I understand, you can get the blood test done and when you tell what drugs you're taking, they take this into consideration when interpreting your results. Redwood, maybe your therapy with progesterone wasn't successful because you didn't take adequate amounts of it. I also think you have to get your blood checked regularly and make changes in dosage - this is the only way to properly balance hormones. Visanne works fine for my endometriosis, but it's killing my libido, that's why I want to get off. We'll see what the doctor says. Has anyone read a good book on bioidenticals - related specifically to endometriosis?
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Post by redwood on Apr 24, 2012 12:15:29 GMT -5
latika, I understand what you said in the bio-identicals thread about not wanting to stop the Visanne for a month to measure your hormones. I'm the same way and declined to do that. I don't want the pain back. You CAN test your estrogen while still on Visanne. I had mine tested while I was on BI progesterone. But it registered as higher than it was BEFORE I started BI progesterone, although at that time my progesterone was really super high since I was taking 200mg in troche form. Your progesterone level won't be accurate though if you're still on Visanne. Although since Visanne is not natural progesterone, maybe it wouldn't skew it? Apparently it will screw my FSH test as my Dr. told me that. I had it done yesterday anyway. In response to your questions on the Visanne thread: Yes, women with endo SHOULD have high estrogen in relation to progesterone. But you could have really low progesterone and slightly higher estrogen which is low but not in balance with progesterone. and here's my whole story regarding taking the BI progesterone: I had a Dr. (MD) prescribe the first BI progesterone for me after a blood test. At the time of the test I was using over the counter natural progesterone, which the Dr. thought was useless so he said it wouldn't affect the blood test (I think it might have.) So, I took troche form (lozenges that you dissolve under your tongue) every day without a break. I started at 100mg and that made my pain worse for a month or two, and then it was increased to 150mg and that was a bit better and finally it was at 200mg and that worked really well for one month, with no pain at all. But then I moved to Canada (from the USA) and after that good month was running out of medication so I needed to go to a naturopath (seems like MD's in Vancouver are not into prescribing bio-identicals for endo - unless you go to ones that you need to pay a lot of money to see) to get a new prescription and she wanted me to try and stop for my period every month since that is more natural, so I didn't take it every day anymore, but took a 5 day break. At first this was much worse, but then it was ok for about 5 months (although never as good as that one month where I had no pain at all), but then the pain started increasing. My naturopath prescribed herbs and supplements to lower my estrogen and didn't want to raise my progesterone medication. In tests, my estrogen became lower but my symptoms were the same. At the end of last year, I started having reactions to the troches on my gums and tongue, so I switched to the cream form and that was a disaster and I had much worse pain. the dosage was increased the second month but didn't help - was even worse. Then I went back to the troches for one month (since I still had some left) and the pain that month was the worst yet. I was supposed to see my NP about trying the oral form of BI progesterone, but right before that I had an appointment with my GP women's health specialist and she told me about Visanne and I decided to try that instead. So that's my whole experience with the bio-identical progesterone and my switch to Visanne. Karen, who replied above, took an oral form (capsule), which I have never tried. She seems to be able to take it just part of the month and not have issues with that, while taking it every day seemed better for me (although not as natural). I did take the troches every day that last month I took them, but at that point, it didn't seem to help. I'm not sure why the cream had such a bad reaction for me. I think maybe it was not strong enough. The pharmacy said that 200mg troche was an equivalent to only 40-60mg of cream and that is what I tried, but maybe that was too low. The pain was so bad those months though, that I just didn't want to experiment anymore. Karen and I had totally different reactions to the progesterone and you could have even a different one. Everyone seems to react differently to this and other drugs too. So you just have to try them and see how they affect you. You have to take the BI progesterone at night, as it makes you tired and in the beginning, almost like you're drunk. You adapt to it after a while though and the effect is lessened. But it's great before you go to sleep then. You can sleep really well.
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