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Post by hellsbells on Apr 23, 2010 11:41:54 GMT -5
Well, I just got some test results back today. 2 years ago I was diagnosed with H.Pylori and had the triple cocktai for treatment. I mentioned it t o my new doc a couple of weeks ago, and I she suggested another test (stool sample). Lo and behold - it's still there, or I have it again. If you look at the symptoms it all makes sense. And apparently around 50% of the world's population is infected with it. So antibiotics for a week for me!
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Post by breen28 on Apr 30, 2010 22:45:33 GMT -5
Karen I may have a little insight into the Songohistogram. It is very similar to an HSG that many who go through IVF must have done. the difference is that with the HSG they use X-ray images (radiation) and the sonohistogram is ultrasound. Anywho the point of my response is about the pain. You will experience minor cramping. I took 800mg of Advil before both mine and I had minor cramping afterwards. I was well enough to go to work (although I kept the day off ) However, each person does tolerate pain differently.
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Post by Karen on May 1, 2010 6:34:38 GMT -5
Thanks for the info, breen. I'm putting it off because I think it's a completely unnecessary test (and likely costly with my insurance) for my symptoms. The new doc that ordered it chose to ignore a whole list of symptoms, but chose to zero in on one minor symptom that causes the least amount of problems in comparison, and that's why she ordered the sonohysterogram. In addition, an ultrasound showed a very minor issue that would easily explain that minor symptom, yet she still ordered another test. I really don't trust this new doc and will not go back to see her again.
I'm going to see a new doc next week and I'd be willing to bet the new doc says the test is not necessary, at least not until several other things are ruled out...
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Post by Karen on May 4, 2010 19:42:03 GMT -5
Saw new doc today. She didn't tell me much that I didn't know already, but she told me a lot more than the traditional gyn I saw. And everything she told me today lined up with all the research I had done previously.
Basically, she's assuming that with endo, my estrogen levels are higher than my progesterone levels, and the goal is to balance them out. She said diet is a huge part of that - good diet means your liver isn't over-working and can filter the excess hormones out of your body better. She said the 21 day cleanse I've done a few times is a good one at getting things back to the way they were, and said it was good that I continued to follow the diet to an extent.
She prescribed me prometrium - it's a bio-identical progesterone (pill form). I'm starting out at the lower dose. After I'm on it for 3 weeks after my period, she'll do a blood test for my hormone levels. She said in her experience, the blood tests tell a much better story of what's going on than the saliva tests. She said saliva tests are touted as being better by places that aren't licensed to draw blood (alternative practitioners), but they aren't as precise. When I told her my other docs didn't think it was necessary or was too difficult to test my hormones, she said as long as she tests them at the same time in my cycle each month, she can get a good idea of where things are at.
Then she gave me a saliva test to test my adrenal function. I have to take some samples and mail them in... with a big fat check. Insurance won't cover it, but I'm willing to do it as she said it could be the root of my fatigue. That or my thyroid. Even though my TSH may test normal, she said if it's above a 3 she always treats it, and even it's above a 1 and I fit the typical symptoms, she'd still treat it. Oh, and she said my basal body temp is low, also suggesting thyroid. She made a point to say that she'll always treat based on symptoms EVEN IF the test results come back in the normal range. Yay! Some docs forget that we all don't fit into a cookie-cutter template of test results.
Sounds like the next steps are blood tests, then once she's back after knee surgery, we'll look further into food allergies/insensitivities. She said there are other kinds of tests she can do that may show a different picture than the skin tests I had done recently.
She was a bit quiet and didn't give me a ton of new info, but she seems to know her stuff and I'm hopeful this will go somewhere. Fingers crossed!
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Post by hellsbells on May 5, 2010 12:50:20 GMT -5
Great news babe, hope you get somewhere!
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Post by Karen on Aug 17, 2010 19:35:01 GMT -5
So seeing this new doc has to - hands down - be the best thing I've done so far. I've seen her 3 times now? She's the one that's tested my hormones, put me on bioidentical hormones that are doing wonders for daily pain and even menstrual pain! She also pinpointed (and is treating) my low adrenal function, so I have much fewer days where I'm dead tired. Progress!
So for the last 1.5 years or so, I've known some foods cause more pain. Usually I can tell within a minute or two, but my scratch test by the allergist didn't detect anything since it only looks for one kind of reaction. So, I had a blood test last week and I got test results today. Turns out of the 22 foods tested, I reacted to gluten, cow's milk, yeasts, and egg whites. I knew about the dairy, and suspected yeast as I always felt a bit weird the day after having beer, and had a hunch about gluten, but absolutely clueless about egg white. But I know there were instances where I had small amounts of egg white in a recipe and I had pain. So it's all coming together! More diet modifications, mostly when I'm eating out, though it shouldn't be too hard to follow at home.
Since May, my quality of life has significantly improved, as has my attitude towards it all. Yay for progress!
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Post by hellsbells on Aug 18, 2010 13:50:28 GMT -5
Yay yay yay!
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Post by Karen on Sept 21, 2010 18:09:57 GMT -5
Ok, had another follow-up today. She made a few adjustments and is looking into a few other things.
1. Towards the end of my cycle (to be consistent in the timing with my previous test), she'll re-test my hormones. She's specifically going to look at the ratio of estrogen and progesterone. So I'll go in for a blood test in 2 weeks or so. Until then, my bio-identical progesterone (may need to be adjusted) and testosterone (she thinks this is fine) levels will stay the same.
2. She adjusted my adrenal support supplement so I'm not taking any in the afternoon (I was taking 3 in the am and 3 after lunch). My sleep has been a bit off and I've had a few moments where I felt a bit jittery, so we're seeing if this will help. If I feel the lack of energy again, I can add in another supplement or two in the afternoon if I want to try it out. Honestly, for ANYONE suffering from the fatigue that comes with endo, I'd urge you to get your cortisol levels tested!! I swear, I was ready to fall asleep on the drive home from work a lot of times, but not any more!!
4. She's keeping my DHEA the same. It's such a low dose that she didn't see any reason to change it at this time unless we've ruled out everything else.
5. She gave me a supplement to help with inflammation. I'm to take one pill on an empty stomach twice a day, except when I'm leading up to my period, I'm to take 2 or 3 twice a day. Basically, the supplement inhibits the COX-2 enzymes, which produce prostaglandins. I'm excited to try it, and no nasty side effects of drugs!
6. She gave me a urine test to determine my neurotransmitter levels (dopamine, serotonin, GABA) since I still have brain fog on occasion even though my energy levels are way better.
I'll follow up with her in 3 weeks. Every time I leave her office, I'm so thankful that she took the time to not only listen to me, but do something to investigate and treat what I'm telling her.
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Post by amber84 on Sept 22, 2010 13:02:23 GMT -5
It is so great that you have found such an awesome doctor Karen! Glad she is helping you figure things out.
I am really interested in the DHEA and Cortisol level testing. Very interesting! Thanks for sharing!
How do you keep track of all of your doses being that they change at different times of the month?? Do you keep a journal?
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Post by Karen on Sept 22, 2010 17:15:08 GMT -5
I track my temps online every day so I can keep track of ovulation, periods, etc. so it's not that hard to keep track. In the few months I've been seeing her, two of my friends have also made appointments with her! Though I think I could see her for a pap or whatever, I'm still keeping my gyn as she'd be the one that would do surgery should I need it again. My new doc is the only doc in a private clinic, so I'd need to go elsewhere for the big stuff. As for the cortisol/DHEA stuff, there's a whooole long thread here about it: cjlevett.proboards.com/index.cgi?board=related&action=display&thread=3951 I can already tell I need to up my dose a bit as I'm dragging this afternoon, and I haven't had that feeling for no good reason in a while... Amazing what chronic stress can do to us!
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Post by hellsbells on Sept 29, 2010 13:20:56 GMT -5
Looks like I'm at a dead end again. According to the letter the endochrinologist sent to my GP (which GP never got - I requested a copy on Monday) he's suggesting CFS. Great another 'we don't really know why you're tired so we'll label you with this'. Karen, before you ask, local labs don't do the saliva test you had. I might ask to see if it can be done privately.
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Post by Karen on Sept 29, 2010 14:20:26 GMT -5
There are other ways to test for cortisol, too!!
Crappy you're not getting more answers. I hate that they just throw a 'diagnosis' on there (IBS, CFS, etc) when nothing else seems to fit... Crap!!
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Post by hellsbells on Sept 29, 2010 14:59:35 GMT -5
My cortisol was tested by blood at 9 am, I get the impression it was normal.
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Post by Karen on Sept 29, 2010 15:51:12 GMT -5
Well, there's a difference between 'normal' and 'optimal', and the ratio of cortisol to DHEA is just as important!If the ratio is off, even if cortisol is 'normal' can have quite an impact. Not saying that's what's wrong with you, just want to make sure you know!
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Post by Karen on Oct 7, 2010 17:31:56 GMT -5
Ok, got my test results for my neurotransmitter levels. LOW! I KNEW IT! Epinephrine, norepinephrine, dopamine, serotonin, and GABA were all low. The only thing that was normal was my creatinine level. Have a follow up with my doc next week and will discuss a plan for bringing them up, and will also discuss my hormone test results.
Will post more about what all those things do later.
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