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Old 08-15-2007, 05:10 PM #11
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Default Not having your daughter is probably a good thing?

It is YOUR appointment, it should be 'professional' quality time between you and your doc.
Doppler I had recently was a no-brainer kind of thing, Done in-office and well, DONE! It was a more 'fussy' procedure the decade plus ago when I'd had my last one.

DO do some homework about any other meds you are taking tho...some things, such as synthroid do not like to be taken within 2+ hours of other meds. That is in the fine print called 'prescribing information' ...if no connection or problem is 'found' call each med manufacturer and ask. That's what those 800 numbers are for! I've found the folks who answer to usually be very helpful - but expect to spend at least 20 minutes with each uninteruppted. They do track all this stuff and report to the FDA who tracks it all from all over. If we relied on docs to 'report' our problems, we would have no meds removed from the markets due to 'adverse reactions'.. You can also be kept up-to-date on any key med interactions that crop up-either thru the med-web sites or the FDA.

Pity we can't get revenge on the horrible docs. Wish WE the patients could do some sort of acknowledgement for the good ones! Nite and day the differences!

I am imagining all kinds of apparel one might wear when going to a doc's ...thing is, you gotta 'undress' on occasion and re-dressing could be awkward without your squire! - j
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Old 08-17-2007, 12:12 PM #12
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I survived the doctor appointment, as anticipated, and (after seeing my panicked face ha ha) he said I don't have to lower my thyroid levels.

I told him I've been having pain in my right shoulder (old injury) and my left shoulder, and right leg. Also, I still feel very unwell. We talked about doing a pituitary function test and other hormone tests, and then he said, "You know what? I'd like to talk to you about Chinese medicine."

He explained how Western medicine tends to pinpoint problems and treat those specifically, where Chinese medicine take a "whole body" approach.

He said I need to get my heat back up. (I think he said I don't have enough Chi but I could have gotten it backwards.) Although I swim and walk a lot, he said that I need aerobics to bring my core heat back up. (I'm always freezing, and it doesn't help that I live by the Pacific Ocean and it's always cold here.) And he said we need to get me feeling well. Although I don't feel good enough to do aerobics, he said it's a vicious cycle and if I push myself to do a little bit at a time, everything should start improving.

I like this approach. Beats the heck out of throwing some pills at the problems. Here's what he prescribed.

Avoid cold foods: raw, dairy, sweet, sugar, cold
Encourage heat: cooked foods, hot drinks, soups, spicy, ginger
Aerobic exercise: 15 minutes, 3 times a week, heart rate up & sweaty
Panax Ginseng: 600 mg/day
Astragalus: 200 mg/day
Tyrosine: 500 mg/day
(herbs that support endocrine function)

I'm going back in six weeks and we will see how it's going then.

I had a major anxiety attack about two hours after my appointment! At least it was after, and I'm hopeful about this whole-body approach.

Gotta go now, I'm off for my "power walk"!
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Old 08-17-2007, 09:34 PM #13
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I like the whole body approach.
Some stuff he put you on though.. oy... hope you don't bruise. But I tried tons of the herbal stuff when I was looking for anything to help me feel better. I even went to a Chinese Herbalist and had him formulate a tea especially for my health (too bad it made me vomit but that is another story - I did really try).
Do try them and see how they help. However in my experience, I had a pit problem and it only served to mask symptoms and not get to the root of the problem. We need to see if the underlying issue can be addressed and not just the symptoms. That turned out to be my biggest issue in the longetivy of my quest for a diagnosis is that doctors want to treat you piecemeal and not look at the whole you. This doc seems to want to look a the whole you but does not want to test the whole you?
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Old 08-18-2007, 01:50 AM #14
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If the pituitary isn't functioning well, is the cause always a tumor? If not, is there treatment?

Thanks in advance!
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Old 08-18-2007, 03:46 PM #15
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Tumor? Not that I know. In my case my Cushing's was caused by hyperplasia which does not show up on an MRI well - just a shadow so most radiologists do not see it. I have a friend who got growth hormone deficency from a car accident so trauma can also be the cause.

Treatments can be to make up for the absent hormones or surgery has to remove a tumor if it is causing too much of a hormone. I am panhypopitutary after pit surgery, thyroid surgery, adrenal surgery and ovarian surgery.. all were abnormal on me (oh and imaging said most if not all were largely normal, incorrectly, which is scary). I take every hormone but vasopressin. Some pills, some gels, some injections.
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Old 08-18-2007, 05:41 PM #16
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Default OK so the 'Pit' isn't functioning as it ...

should....How pray tell, is that soo far different from a thyroid? The meds may be a 'bit' different' but, malfunction IS just that: Malfunction.
Whether thru illnesses or disease or whatever we've done in the past, the best way to approach this all is WHAT CAN BE DONE THAT IS THE SIMPLEST with the LEAST S/E's?
Starting out slow, low meds and all that, should be the best and most comprehensive approach. Now I guess Its up to you to find out what all options there are and not panic?
The Majority of pituitary issues aren't cancer. While it doesn't hurt to check out that possibility thru biopsies and blood tests and other 'specialty tests' - [IF your doc and plan allows it!] I have to admit that having another cancer, well the whole concept of thyroid/pituitary and other 'glands' kind of makes me...well, spooky? You just have to 'go' with the tests. Hindsight in my case is that 'some' specialty testing could have detected thyroid and cancer issues earlier....BUT -BUT and I emphasize this...there simply was no reason to DO SO [at that time]! Don't forget, that even in the best and most 'progressive' of insurance plans...docs have to 'JUSTIFY' any testing that's done. It is a nasty evil cycle and one in which scoping out all potential issues outside of 'immediate symptoms' is hard to do.
IN the most BASIC sense, a malfunctioning endocrine 'organ' does not mean cancer. Usually it does not-but the 'ripple' effect on all other endocrine functions and thus lots of the rest of one's functions suffer. To what degree, is the question. If it were me [and I am NO doc, just a big time patient! - I would ask for a serious 'sit-down' with docs and ask OK WHAT NEXT? and what do WE do about it? {YES? We really LOOVE herding cats?-NOT!}
NOW is not the time to ask why it all happened....Key to this all is WHAT TO DO ABOUT YOU NOW.

We can't go back, we have to 'make do' with the NOW and do the best we can with meds and any other resources available that are prudent and safe.
If I could go back and change what was and wasn't done to me during my onset...well. things could be a lot different! But, then YOU wouldn't know what I try to share! - I surely hope this all helps - It's frustrating to the degree of outer space at times - it's so surreal. That is the medical world.
Hang in there, every step of progress is just that: PROGRESS! - j
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Old 08-19-2007, 08:20 PM #17
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I understand what you are saying.
In my own case... my own story... I had what should have been very very good docs tell me to ignore a known pit tumor when the symptoms did not make sense.

Only 12 years later and now that I am disabled due to that poor poor poor tragic advice do I really want people to think that... well, yes, pit tumors are not cancer but there are two kinds that are potentially deadly. Lucky me, I had one of them. Did my tests show it - er - only sometimes! My symptoms showed it all the time but as my tests were all over the place, the docs felt that they could ignore it all the while my health was crumbling literalling in front of their eyes. In my brain, I know it is a problem with the testing and not me as surely as the day is long, hello! I was sick but the docs, as you say want numbers and it was not there. I came very close to dying before I got help with my Cushing's. And unfortunately I progressed so far that I cannot recover. I blame the horrid docs that ignored what I was experiencing even when the numbers were not clear - something was clearly not right. They felt with the labs, even though some were clearly abnormal, that they could just say come back in 6 months over and over and I am forever paying the price for that.

Yes, there is a tremendous ripple effect. Adrenals effect the male/female hormones and the pit and thyroid and very related in my experience.
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Old 08-20-2007, 11:16 AM #18
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Thank you for sharing part of your medical history. I am sorry to hear about what you have been though.

Thank you also for opening my eyes. I have now realized I have almost all of the symptoms of Cushings, and am a little alarmed in the realization that I have been off and on cortisteroids for asthma and eczema for decades.

I'm weary of being told that I look healthy, when I feel awful and I hurt all the time. My doctor and I are going to have a different conversation in five weeks. I need some tests done. Once again, thank you so much.
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Old 08-20-2007, 11:43 AM #19
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You are welcome. I don't want to come across as an alarmist - it is just that I was sadly served by following what should have been good advice. You may or may not have the same issue but sadly, I have come across too many that have had the same problem that was ignored and I never want to see anyone in the same boat as me.

I just had to ask for a handicapped sticker yet everyone tells me I look great so I know how it feels. I can hardly get around, I am on long term disability and lost the career that I loved.

I sincerely hope that you don't have Cushing's but if you do, hope you can get prompt treatment so you can recover well! And don't let some normal tests - especially dexamethasone suppression tests put the doc off - I suppressed on all of them and still had it.
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Old 08-29-2007, 07:43 PM #20
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Default Rumpled, you aren't being alarmist at ALL

Throughout the few years I've now had CIDP, I find that so many folks who have ONE A-I issue, tend to get/have others as well.
About all we can hope for is that SOMEONE who suffers similarly reads this and learns from our shared experiences....
I for one, constantly asked any doc who'd listen "Is THIS related to the THYROID in any way?" and the answer was always NO. I think, and this is just one humble 'patient's opinion....that my having been constantly on Synthroid could have masked the deteriorating thryoid and subsequent sx's were so overlapping with my other 'issues', that no one professional even considered it a real aspect. It was only after I'd gone on the AI's for post-cancer treatments-crossing the 'line' to osteoporosis that they couldn't ingnore the connections anymore. Don't forget, all the meds you are on affect everything, and I MEAN everything if not taken properly.

Checking out those medication prescription 'sites' is useless as WE tend to get the more obscure and subtle s/e's when we don't take our key meds well timed apart from each other. Then to make it muzzier, taking some supplements too close to any key med can either enhance or detract it's effectiveness. I have called each key med's companies twice and I plan to do it annually from now on. Best way to 'keep up' on what's NOT in the news?

I don't know about you all, but, at times I feel as if I've a very small finger in a hole in the dyke that may get lots bigger fast! The more I learn, the more I realize that professionals, docs and others don't know the long term effects of what all we try to do to either feel better, well or even tolerable!

Being cautious to me seems to be the 'safest' approach, being informed, while cautious is whole bunches better! - j

PS: When I get so well that I actually feel "PERKY" You all will be the very first to know!
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