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Endocrinology? - 12/8/2012 4:28:14 AM   
FelineFae


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Status: offline 		Here it goes . . .

Since October, i've been in a new country, going through the paces of getting to right specialist, which i believed to an OB/GYN. Since i've been waiting, i've spent most of my time sandwiched between two heating pads.

i have two Lap' surgeries attesting to my endometriosis and ovarian cysts. As of this October there's also a CT of a nasty cyst swatting on my right ovary which is weird because it hurts on the left. However, any of the multiple times in the past that doctors have put me on the standard treatment of contraceptives to "even out" hormone levels, i just end up feeling really sick the whole time i'm on it and it has never improved the statis of the Endo' or occurance of cysts.

Thursday i finally saw the OB/GYN, whom shall henceforth be refered to as Baby-Catcher Barbie. She all but laughed at me when i told her that i did not want to go on any kind of BC because it makes me sick and has never helped.

Now, i have had to go to other doctors for general weirdness, like the time a normal CBC came back with my potassium level at 2.7 . i've been told that " your thyroid is overactive " but then the doctor went on to explane that somehow the thyroid was overproducing one thing but underproducing another thing. i've been told that my anxiety stems from something off with my adrinal glands, and of course, my girly hormones are never what they're suppost to be, ever.

So, should i tell Baby-Catcher Barbie to frak off and try my luck with a proper endocrinologist since i'm going to be stuck here for the next couple of years?

Sorry, i don't know any other English based sites that are awake at this time.

< Message edited by FelineFae -- 12/8/2012 4:31:00 AM >

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RE: Endocrinology? - 12/8/2012 5:55:28 AM   
MAINEiacMISTRESS


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Status: offline 		---You are not alone. Womens health care is still in the voodoo barbaric stages. Throw some meds at the symptoms to stall you...when the real treatment is simply to REMOVE the thing. It could be a parthenogenic-based cyst...and those will REALLY screw with your hormones.

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RE: Endocrinology? - 12/8/2012 6:07:28 AM   
FelineFae


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Status: offline 		Is that anything like an endometrioma ?

e2a
parthenogenic-based cyst

all Google got me was something about shrimp...

< Message edited by FelineFae -- 12/8/2012 6:10:09 AM >

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RE: Endocrinology? - 12/8/2012 11:29:33 AM   
stef


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quote:

ORIGINAL: FelineFae

So, should i tell Baby-Catcher Barbie to frak off and try my luck with a proper endocrinologist since i'm going to be stuck here for the next couple of years?

It's never a bad idea to have an endocrinologist involved when you're monkeying around with your endocrine system. Yes you should definitely try your luck with one.

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RE: Endocrinology? - 12/8/2012 4:17:18 PM   
Soyokaze


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Status: offline 		If you have something like Hashimoto's Thyroiditis (something I have) then your TSH (Thyroid Stimulating Hormone) would be high and your TS3 and TS4 (I think) would be low although if I remember right TSH is produced by the pituitary gland and not the thyroid; you'd also test positive for the antibodies that attack ones thyroid. Not saying that's what you have. It sounds like whatever you do you should probably be finding a second opinion. I've had a bunch of problems with doctors not really doing much/able to help me I think I would cry if they flat out laughed at me >.<

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RE: Endocrinology? - 12/8/2012 5:13:28 PM   
FelineFae


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Status: offline 		i've never had a day where i thought to myself, "Damn my achy thyroid." Nor are there any similar lamentations over an insubordinant adrinal gland; the greatest detraction to my quality of life would be from the pain localized to my primary sex organs. Yet, i'm wondering if i (and/or doctors) have failed to see the forrest for the trees. It seemed to me that i needed to "fix" the biggest problem, then work down the list of prioritized ailments. How would you know if you'd cured insomnia if you had pain keeping up all night? It seems like all the problems ( no matter how big or little their impact on my life ) are tangled in a huge knot. Still, they all have one thing in common, and that is they are all tied to the endocrin system.

So, now we waits.
The human body really needs to come with a Hertz Guide book.

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RE: Endocrinology? - 12/8/2012 10:24:54 PM   
kitkat105


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Status: offline 		It certainly won't hurt to try an endocrinologist. If you have that many cysts, it sounds like you need a definitive diagnosis of ?maybe PCOS and an actual management/treatment plan. OBGYN's are frequently only interested in people wanting to have babies, so you really need to find one who has a special interest in gynaecology alone.

A potassium level of 2.7 is very concerning - I hope they offered treatment for this? Otherwise you are at risk of serious cardiac complications.

As far as endometriosis, I had been lead to believe the current gold standard is usually combining two forms of hormonal contraception - the 'pill' and either the implanon or mirena IUD. I'm not surprised that the contraceptive pill alone does not give you any results if your endo is severe.

< Message edited by kitkat105 -- 12/8/2012 10:26:01 PM >

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RE: Endocrinology? - 12/9/2012 1:04:38 AM   
FelineFae


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quote:

It certainly won't hurt to try an endocrinologist. If you have that many cysts, it sounds like you need a definitive diagnosis of ?maybe PCOS and an actual management/treatment plan. OBGYN's are frequently only interested in people wanting to have babies, so you really need to find one who has a special interest in gynaecology alone.


In reguards to cysts, the only solid information i've received from past OB/GYN is that i get a lot of cysts. A few of them tend to themselves but mostly they'll stick about 'til i'm in so much pain they have to be removed. my last Lap' surgury i had a 4gram cyst removed from the interior of an ovary, which is kinda impressive since an ovary should only weigh at most 3.5 grams. i want to say that one was an endometrioma, but i can't remember.

i've had two great motivations to seek out the assistance of an OB/GYN. 1, i hurt. 2, i want kids. i want kids a lot.

Thus far, i've believed the endo' to be the root of my health problem, but it would seem that the endo', non-endometrioma ovarian cysts, and faulty adrinal glands, might be secundary bits of misery based in the primary source of a wacked out thyroid. If you have a lot of pain in your pelvic cavity and can't get pregnant, you look first to your womb, not your throat. Well, unless you think about my motto that swallowing is the best birth control method, but i digress...

What i know for certain;
* i have endometriosis and screwy estrogen levels that are prone to spike
* i have ovarian cysts which may or may not be related to the endo'
* my adrinal system is not healthy
* my thyroid is "over-active" said the doctor that went on to say something about it makes too much 4something but too little 3something. i was in a lot pain that day and not really paying attention since it wasn't about my womb.

quote:

A potassium level of 2.7 is very concerning - I hope they offered treatment for this? Otherwise you are at risk of serious cardiac complications.


You should see how amusing it is for me to read the above. You are right, i just have an off sense of humor. It's funny to me, because i tend to test regularly between 2.7 and 2.9 . i have to take a perscription suppliment, which keeps me from "going under" but i have yet to make it over 2.9 .

quote:

As far as endometriosis, I had been lead to believe the current gold standard is usually combining two forms of hormonal contraception - the 'pill' and either the implanon or mirena IUD. I'm not surprised that the contraceptive pill alone does not give you any results if your endo is severe.


BC doesn't help me, i've been on oral contraceptives and shots. They make me ill, and have never helped my endometriosis statis nor have they countered the occurance of ovarian cysts.
As for an IUD, those normally aren't suggested for childless females that wish to have children in the future.
i was even treated with Lupron after my first Lap'. i got really sick. That wasn't repeated the following surgury, a Lap'/LUNA combo'.

Honestly, i've been trying to put together a puzzle to which i just don't have all the pieces. Why? Because Chaos's employer has us going to hospitals that thought i didn't need to be on the meds for my pain management that i was on in the States. Trying to solve and unsolvible puzzle before whenever my next pointless appointment is the only thing that can keep my mind off the pain.

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RE: Endocrinology? - 12/9/2012 6:20:28 AM   
Rule


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Status: offline 		What other medications are you on?

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RE: Endocrinology? - 12/9/2012 6:29:56 PM   
FelineFae


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Status: offline 		Potassium Chl Er- PO 8 MEQ = 1 per day
Prenatal Vits = 1 per day ( whenever i remember to take them )
Clonazepam * this was percribed in the States to take as needed for panic attacks, so i take them maybe twice a month

Rum = as needed for pain ( let's call it a home remedy )
i was perscribed naproxen, but it doesn't help and rips apart my innerds.

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RE: Endocrinology? - 12/9/2012 10:18:38 PM   
theRose4U


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Status: offline 		This is actually something that should be on your radar as part #3 I will detail below
quote:

ORIGINAL: Soyokaze

If you have something like Hashimoto's Thyroiditis (something I have) then your TSH (Thyroid Stimulating Hormone) would be high and your TS3 and TS4 (I think) would be low although if I remember right TSH is produced by the pituitary gland and not the thyroid; you'd also test positive for the antibodies that attack ones thyroid. Not saying that's what you have. It sounds like whatever you do you should probably be finding a second opinion. I've had a bunch of problems with doctors not really doing much/able to help me I think I would cry if they flat out laughed at me >.<


Google PCOS & read closely. While I missed the fun that is endimitriosis & got cysts the size of amall oranges & in one case grapefruit that required an ER visit. The godsend for my cysts even though I too got sick on oral birth control was a mirena implant. While my functional medicine doctor I will go into later HATES it, my cysts are gone, irregular periods gone, pain from that gone. Bonus is I can't be bred for 5 years without having it removed (fat chance)

Muscle & bone pain that goes along with episodes is actually a minor type of fibromialgia helped with a strict gluten free diet. This means no wheat, barley, hops, spelt or kamut grains, flour, MSG or anything with those added (most frozen meals, box mixes, gravys, sauces & the entire bakery section are now out.
This diet also helps with the intestinal complications that accompany a cyst.

#3 hashimotos is discussed above
#4 adrenal fatigue (in my case failure) can cause chronic fatigue type issues that go hand in hand with the pain, aching & stomach distress

So now what you ask? Functional medicine doctor has been my godsend for FINALLY not having a doc tell me its all in my head or if I eat more wheat bread & salad life will be ducky.
Endocrinologist may be the closest thing abroad. Here they are MUCH more expensive & drugs available (thyroid, adrenal & birth control) are limited in what they can do. Even gastroenterologists here will not accept celiac as a disease & gluten free diet as an option because "its not a disease if there isn't a pill for it"


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RE: Endocrinology? - 12/9/2012 10:29:52 PM   
theRose4U


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Status: offline 		Oh & hate to break the news but if you have all of this IVF becomes a requirement as well as constant blood monitoring to keep the pregnancy. Hormone levels not doing what they should cost me my chance at children. While I am assured by my naturopath I could become pregnant soon if I have my implant removed (based on his wifes 2nd delivery), I am not sure at my age or relationship status I could emotionally afford a very expensive miscarriage...or worse a bed bound pregnancy solo.

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RE: Endocrinology? - 12/9/2012 11:03:04 PM   
FelineFae


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Status: offline 		i'm going to reread this when my brain is somewhat more cooperative. i think there's something i'm missing when i read it, but i'm pretty sure that's on me, not you.
It's been established i'm often guilty of not seeing the forest for the trees.


i have done my best to keep up with any developements in the realm of endo'. 2010 i went 6 weeks gluten-free to see if there was any notable reduction in pain. There wasn't. i told the Dr. about my experiment and she gave me a look which kinda read " Isn't that cute ? " .



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RE: Endocrinology? - 12/10/2012 8:22:39 AM   
theRose4U


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Status: offline 		Fae there are a lot of trees in this issue & they tend to tumble into one another when the chips are down. Its also VERY discouraging when FINALLY got the cysts under control & still felt sick/ tired all the time & promised weight drop never hapened even with gym, restricted diet & the like...actually made me feel worse because of the adrenal & wheat issues.

Simple break down is this:
-Endo pain is likely worsened by intestinal back up and/or bone pain
-gluten free diet will help gut & bone pain but not endo pain
-endo is made worse by irregular hormone levels...caused by thyroid & adrenals being out of whack (it becomes a caboose makes the engine whacky thing)
-having a doctor that "gets it" is the only way, I've had GI specialists refer me for psych eval & hospitals put me down as drug seeking after 4th visit still didn't locate source of the pain. like I said my functional medicine doc has been a godsend
-solution assuming you can't find a functional med or english speaking homeopath becomes a ride 3 horses with one ass problem. Take what works from endocrinologist, Gyn & GI doc at same time.
-mirena has been my godsend for the pelvic pain. No more cysts has improved my uterine health immensely & leveled off the whole estrogen/progesterone roller coaster so thyroid & adrenals can be addressed

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RE: Endocrinology? - 12/10/2012 8:45:16 AM   
FelineFae


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Status: offline 		i'm seeing the GP later this week. Turns out both my bio' parents have hypothyroidism. Some people have really close relationships with their family, i'm not one of them.
Da is a large 6'4" 300lbs man, it's not hard to imagine he'd have hypoththyroidism, he has diabetes as well. Mother is weird. She's 5' and 90lbs soaking wet, and was diagnosed with hypothyroidism after a recent lobectomy in her left lung. Well, it's been a couple years and she looks like more of a meth-head than ever.

Everyone that has posted has been helpful. i've copied and pasted my fingers raw and burned off a lot of brain cells on this riddle. It's not easy to fight the " life's a b**** and then you die " mentality. i know the world isn't fair, Labyrinth is one of my favourite movies. Y'all helped when you didn't have to and that's something that people remember.

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RE: Endocrinology? - 12/10/2012 12:17:12 PM   
SylvereApLeanan


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quote:

ORIGINAL: theRose4U
The godsend for my cysts even though I too got sick on oral birth control was a mirena implant. While my functional medicine doctor I will go into later HATES it, my cysts are gone, irregular periods gone, pain from that gone.


I would be very careful with a Mirena. I had to have mine removed after 3 years because it started causing ovarian cysts. Which I discovered after 2 trips to the ER and a CT scan. In fact, the recommended time for a Mirena to be left in is no longer 5 years...it's been reduced to 3. It also made my already irregular periods even more irregular and (gods help me) LONGER. I wouldn't suggest it for someone with endo.

In addition, a gluten-free diet isn't necessary and probably won't help unless she has Celiac's, Krohn's, or some form of colitis on top of everything else. I've heard that taking diabetic insulin pills can help PCOS but that's not something to mess with unless a doctor suggests it. Too much insulin is just as bad as too little. But insulin therapy might be something to bring up with your doc, Fae. I'm not sure how effective it would be for endo.

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RE: Endocrinology? - 12/10/2012 2:25:15 PM   
theRose4U


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Status: offline 		She did just bring up a point I forgot of this jumble, insulin resistance. Its not true diabetes because you body produces insulin, your body just has no idea what to properly do with it...thus resistant weight that even exercise & diet don't properly end

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RE: Endocrinology? - 12/10/2012 7:33:17 PM   
FelineFae


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Status: offline 		Last year, i went off an antidepressant when i left school and dropped from 145lbs to 125lbs inside of five weeks, and kept dropping in weight just at a slower pace. There were no changes to diet or activity level.
Now i wear sz3 juniors jeans and skirts. It kinda works out since i'm now buying my garments off the local economy.

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RE: Endocrinology? - 12/10/2012 9:42:16 PM   
theRose4U


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Status: offline 		Celiac test as long as you're running everything else couldn't hurt. My weight annoyingly "on hold" I still attribute to thyroid still being next to nothing yet not supplimented

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RE: Endocrinology? - 12/12/2012 4:04:06 PM   
MistressDarkArt


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Ask a competent pharmacist (NOT an MD) whether over-the-counter DHEA would help your various conditions. DHEA can stabilize ALL hormone levels as well as help you replenish your adrenal glands if they are depleted (usually due to pain and stress). Along with proper diet and exercise, it can improve mental focus, muscle tone and stabilize weight.

Inquire what the proper dosage would be for your age group. Best of luck, good health!

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