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bibsweet

Aug 18 2002, 12:58 PM

Hi,My name is Nancy and I am fairly new to this forum, though I have been a surfing fool for many weeks now. What a wonderful website!!It seems the more I read, the more confused I become.

I am a data-freak and try to research the things that are happening to my body, but I can't seem to figure out the big picture, and so far I have found no Dr. who will look at the big picture.

Here's the deal:I am 44, I have 4 teenagers and a wonderful husband who is an R.N.When my identical twin boys were born 14 years ago, I had a C-section, had my tubes tied, and had the twins 6 weeks early. This seems to have thrown my body into turmoil. Soon after, I began bleeding extremly heavy during my periods, had back pain with the periods and PMS like you read about. At age 39 my GYN saw a large lump on my neck and sent me to an Endocrinologist for further testing. He took biopsies of the lump and the tests came back benign. He told me it was nothing to worry about, just a lump, stop worrying so much, get a life, and see-ya-later. I did stop worrying because he made me feel like a fool for doing so. (he did, however, rupture my esophagus and my neck swelled to 18 inches the next day, ended up on an overnight at the local hospital) The following year I started packing weight on in the hips/thighs/abdomen/arms and breasts all of a sudden. I gained 15 pounds in 2 months, with the same eating habits. Even my underwear were too tight. Grim, indeed.I started noticing pain on my right side just below my rib cage, a sort of constant dull pain with tenderness. I could not even sleep on that side.Then I became exhausted, work (at a florist), and home-life was taking it's toll. I just wanted to sleep. I finally went to my Dr., who has since been fired by me for being a thought-less jerk, and convinced him to take blood. (he told me I was depressed, wanted me to take Zoloft!!)The blood came back with extremely high liver #'s, up in the 400's where 40 was the norm. Off I go to a Gastroenterologist. More blood work, higher #'s. He asks me what the lump on my neck is about. I tell him it's a tumor on my thyroid that I am not supposed to worry about. He tells me to worry, sends me to another Endocrinologist. This guy takes an ultrasound and tells me I now have 3 tumors, one large one on the right and 2 smaller ones on the left. More biopsies, no cancer. Phew. Back & forth I go to the liver man and the thyroid man for well over 2 years.. Neither man wants to know (or talk about) the other. This is frustrating, for I am thinking there must be a connection to all this somehow.Meanwhile, I am having hot flashes and night sweats and PMS symptoms that are driving me, and my dear family, insane. My GYN puts me on HRT patch to help with PMS and bleeding, which I took for a year. This made me gain more weight, and I was still having night sweats. (I am wondering about Estrogen Dominance now... ) Finally I decided to stop using the patch on my own, and stopped cold turkey. The next week I started bleeding and bled for 26 days. My GYN wanted a vaginal ultrasound, which revealed a fibroid tumor and flallopian cysts. I started my next period with severe back pain and abdominal pain and then my leg went numb and I knew something was pressing on the nerve. An internal was done and the Dr. said she could not find the 'broid, so she guessed it was behind the uterus, possibly pressing on the Sciatica nerve. They gave me Darvon for the pain, as well as Naprosyn.I see her again on 8/21 to discuss options. She had suggested an IUD to send Progesterone straight to the 'broid to shrink it, but I don't like that idea. She also mentioned going in to try to locate it's exact position and possibly removing it. Do they grow back? She said that if it were not causing me so much discomfort, she would probably not be concerned about it at all, just watch to see if it grows. My mother had her uterus removed for fibroid tumors and her mother died of cancer of the uterus, which started with fibroid tumors. (I just found this out 2 days ago)

I am currently using progesterone cream 900 daily and vitamin E to control the hot flashes. In reading in this wonderful forum I am seeing that I am not supposed to use the cream every day, but no-one told me this, and so I have been doing this for a month.I am currently still exhausted and am not able to do much more than work 4 days a week and cook dinner at night, sometimes I can't even cook. My legs are soooooo tired, my back aches constantly and I still have pain on my right side, which is getting worse. I also still bleed very heavy (a super-plus tampon every 30 minutes, AND a thick pad) for 4 days once a month. This is getting old.BTW, the liver man did everything short of a biopsy and says I have "a fatty liver" and that it's normal for a woman my age. Last time I saw the thyroid man he asked me if I thought I needed medication. (I thought it was his job to determine that) I did try to take Synthroid once and my heart went crazy, beating hard and fast, and he took me off of it.I have an appt. next week to see a Homeopathic Dr. who I hope can offer some insight into the whole big picture.I am now so totally confused about what to do, and I feel like I have to make these decisions on my own, for none of these Dr's seem to be concerned about all of it as a whole.I read on the web about untreated thyroid problems, and alot of those symptoms seem to apply to me, including liver problems. ???

Does anyone have any insight about what I should do?

Healthcare in this area (Lakes Region NH, very remote) is (obviously) not too good, I am only 2 hours from Boston, but can't figure out what kind of Dr. to go to if I went there.

(I just re-read this and I sound like a lunatic)

Any help and insight from anyone would be most appreciated, I just don't know what to do anymore, and I am so tired of trying to figure it out on my own.Thanks for being there and for listening.~Nancy

Dearest

Aug 19 2002, 09:19 AM

Nancy, first off, you don't sound like a lunatic at all. In fact, you sound very composed for one who's been through so much.

Secondly, because you're dealing with so many health issues, I would strongly suggest seeing another gastroenterologist for another opinion, if that's possible. I recently went through liver problems from hell and what you say resonates loud and clear. I had surgery, every procedure under the sun, liver biopsies, CT Scans, MRI's, medication, diagnoses up the wazoo, bilirubin levels past 20 when after the surgery it should have gone down to zero. Despite the fact that I was working with an excellent surgeon and gastro man, I still insisted on a referral to a top liver specialist at Mt. Sinai Hospital in NYC.

I think it's essential you get your "other health issues" sorted out before you determine how to treat your fibroids and menopause symptoms. You may get various responses from women on the boards who've been through similar situations, but my best guess would be to get another professional opinion.

Also, you can write this to Power Surge's Ask The Doctor. Dr. Warner will give you the best advice he can with the info you've provided. You can also write to Ask The Pharmacist. Pete Hueseman, R.Ph, P.D., Power Surge's Pharmaceutical Consultant, may be able to provide some feedback as to how to address the "other" health and menopause issues

If you have any problems retyping the whole question to the Power Surge Experts, I'll be glad to do it for you so that you receive replies via E.mail. Let me know if you want me to do this for you.

You have your work cut out for you. There's a certain order in which you need to tackle these problems.

Good luck and I hope you feel better.

Best,Dearest

MaryO

Aug 19 2002, 05:16 PM

Dearest gave great info, as always.

I'd like to add my 2 cents, too. If you can get to Boston, I think it would be in your best interest to see an actual thyroid specialist to see what's going on there. Hormone maladjustments can cause so many problems, all over your body. I'd think that those tumors were affecting something and causing your hormones to act up. It sounds to me like this endocrinologist is slacking off a bit, asking you if you think you need medication. Has he run various blood or urine testing to see what's going on?

Can you get in touch with a teaching hospital in Boston? They might be able to look at all the different symptoms and come up a better answer than several different doctors looking at their own special parts.

If not, it might be really helpful if you could get some kind of internist who could coordinate everyone's efforts, so that the gastroenterologist isn't working separately from the gynecologist and so on.

Best of luck to you - and keep us posted!

bibsweet

Aug 20 2002, 12:44 AM

Dearest and MaryO,Thank you for responding so quickly. It's so comforting to know that someone out there cares, and is listening.

I have considered many times to get a 2nd opinion on both Dr.s, but I've just been so tired and discouraged, that I guess it has kept me from doing so. I spent alot of money and 2 full years having blood drawn and being a test rat, and look where it got me. Our insurance has recently changed and now I have a $1000. deductible per year, and none of the in- or -outpatient procedures are covered anymore. The last 2 years have been the first years of my entire life where I had full coverage, which is why I had all that testing done. Sigh.

Dearest, if you could forward my letters to both the Dr. and the Phamacist, I would greatly appreciate that, I am quite curious to see what they say. And thank you.

I am embarrased to say that I could not figure out how to write to the Pro's, I could only figure a way to search archives on the pro's. I thought myself to be pretty savvy on the PC, so that threw me.

And MaryO, yes, the endo-man did run blood work, but never urine. I have had blood drawn for him at least 6 times, possibly more.

This week I plan to gather all my records and get copies MYSELF, so that I can have them to refer to, because I forgot to mention how bad my memory is!! (that was a pun!! haha) Once I get them I will give you more accurate info.

I am seeing the GYN on 8/21 to discuss my fibroids, so I will let you know what she says.

Thank you for being there, I can't tell you how wonderful it is to know you are out there.

~Nancy

MaryO

Aug 20 2002, 01:23 AM

QUOTE

Good, Nancy - I think it's very important to have all your info together, to take to the doctors. In these days of managed care and short doctor visits, there's little wonder that the doctors have trouble keeping up with their patients needs.

If you have all the info with you, it helps them stay focused on you better and can see trends in how you're doing.

Take your folder of tests, what you've noticed about how you've been feeling, anything relevant, to your doctors.

If you feel you won't remember what was said, take a tape recorder, or a friend or family member with you. That way, you'll be able to think about the information later, when you're more relaxed and have more time. I know that I've been hustled through a doctor appointment that I've forgotten all my questions that I'd planned to ask. If I had them written down first, I'm more likely to get answers.

Remember, this is your life here - you want it to be the best it can be!

bibsweet

Sep 25 2002, 12:14 PM

Hi again all,I have been having a rough time of it the last month and am now so discouraged I could just sit and cry.The pain I have been having where my liver sits had gotton to the point where I had to take Darvon just to maintain daily life. They make me loopy, but they take the edge off the severe pain and enable me to still work and get by. The pain got so bad last week that I went to see my PCP. At that point I was not sure what the pain was caused from, only that right where my liver sits was swollen, tender, and very painful. I have a gallbladder scar there, done 20 years ago, that appears as if it were removed with a dull steak-knife, approx. 8 inches long. I have had trouble with this in the past, it felt as though scar tissue were adheared to something else, sometimes (often) when I cough or sneeze, something would "grab" and pull and I would have to stretch out to make it "let go". I was thinking when I saw the PCP that the scar tissue had surely adheared and was stuck. When I ate or drank, I had more pain. It was as though there was no room for the food to be in there, and I would have to have a BM immediately after eating, and then a way lot of flatulance for several hours after, with crampy discomfort.The PCP listened while I whined, asked me about the high liver #'s and why I had not been back to see the Gastro-man as I was supposed to every 6 months. (I was due in June, but did not realize it.) She examined me and when she pressed where my liver is, I about screamed. (below my right breast, above the gallbladder scar, and on top of my rib-cage) At that point she said "Let's do blood work and get you into your liver specialist ASAP" I saw the liver man 3 days later. This is a man of few words, and I did not have a list prepared of questions for him (shame on me). I assumed he would see the bulbus thing protruding and take appropriate steps. He never examined my "bulge", but did order more blood work and an ultrasound. He said he would see those results and take it from there. Here are the results of the blood work drawn last Friday, the 20th Of Sept., by my PCP.(I am still waiting to hear from the Gastro-man for results of Mondays visit)AFT: 117 (normal is between) 5-43ALT: 227 " " " 5-40ALK/PHOS: 232 " " 42-121

This Dr. has been telling me for the last 2 years that I must have fatty liver. Period. What to do about it, how to control it...I don't know. Damage because of it? Maybe.It seems obvious that I should see another specialist and get a 2nd opinion. As soon as I hear the new gameplan from this Dr., I believe I will. In Boston.

I still have 3 tumors on my thyroid, a fibroid tumor, fallopian cysts and estrogen dominance to deal with, but this week the liver wins the toss.I do have an appt. at Dartmouth-Hitchcock Hospital on Oct. 22nd with a specialist re: the fibroid and a possible UAE procedure. I believed the fibroid was causing me alot of the problems I have with my period, but now I am not so sure. (ie; pain, frequent urination, bowel problems, distended stomach; looks like I'm 5 months pregnant)Anyway, just an update.Any feedback or suggestions would be appreciated.*SIGH*Once again, thanks for being there.~Nancy

Suseyq

Sep 25 2002, 02:42 PM

Nancy: Just read your posts. They caught my eye. I looked in my Prescription for Nutrional Healing on liver. Did you know the liver is responsible for regulating the thyroid (it converts the T4 to T3! This "fatty" liver thing. The liver breaks down the food and converts any excess food to fat, which is stored in our bodies. My point is your body is telling you there's a problem. It really bugs me that all doctors do is order tests! (same ones, right) And you have to pay for most of them too! As to your fibroid, etc., don't be rushed into anything on that. You have so much other discomfort, you could be trading one for another. (ie, hysterectomy doesn't always solve pain problems when pain may be coming from other sources.) Muddy waters are hard to read! Then again, Dr. Lee has stated that hormone imbalance is sometimes misdiagnosed as other problems. It is confusing. Good luck. Your post touched me as to an example of as great as our medical institutions are, they still aren't perfect. And they do like to test, test, test!

MrsUnderstood

Sep 25 2002, 03:04 PM

Hi Nancy, You have so very many health concerns to deal with. My heart goes out to you. If you were my sister, I would be helping you get that appointment in Boston for a second opinion even while you await the results from Monday's tests. Your symptoms and test results need to be viewed by a specialist like an internist who can look at the whole picture. It can take a while to get an appt with a really good internist so make the appointment today explaining how severe your symptoms have gotten so you can be put on a priority list. I would agree your liver needs immediate attention. My mother had liver problems caused by a blood transfusion in 1974 which gave her hepatitis C which was not diagnosed because the original symptoms are similar to the flu or another virus. I'm not suggesting you contracted hepatitis C, but remember well how many drs it took to finally figure our her diagnosis. At this point it appears you need 1 dr to coordinate your test results and symptoms and start treating you as a whole person. Good luck getting help soon. ~Helen

bibsweet

Sep 26 2002, 03:37 PM

Helen & SuseyQ,Thanks for posting back. I have been trying to figure out what kind of Dr. to see to get one to look at all this as a whole, instead of as seperate issues, but so far have come up with only a Homeopathic Dr., and of course they are not covered by insurance. So....maybe an internist is a good idea.Boston is 2 hours away. I was just thinking today, how can I get a referrel of a GOOD, SMART, EMPATHETIC, THOUROUGH Dr., who will help? Who do I call for such a referrel? And then, *SIGH*, I am already so skeptical from all the BS I have been through for the last 2 years, what if I get a jerk?I called the Dr's office again today, asking for someone to PLEASE call me with results, it's 3:45 and so far nothing.I suppose it would be good if I knew more about fatty livers. I have been researching on the net, but have not learned much yet. The liver is an organ that usually sits back and works very hard without complaining.

You had a good idea, my sister is one smart cookie, she can make some calls and find me a good Dr. in Boston. (I don't know who to call) She has lots of Boston connections.I will keep you posted.~Nancy

bibsweet

Sep 28 2002, 09:17 AM

Hi all,My Dr. finally called me back, the liver specialist. What a gem he is.He said I had an ultrasound consistent with fatty liver and he was going to call the pharmacy, so which one did I use?At this point, he thought he was done, and planned to hang up. *NOT*I asked him quite a few questions, and I could sense he was getting annoyed with me because I taking 5 minutes of his precious time.It went sort of like this:What do I do about fatty liver? NOTHINGShould I change my diet? NOShould I discontinue taking my vitamins? NO, TAKE THEM.Should I stop drinking alcohol? NO, THAT'S FINE.How does a fatty liver present itself on an ultrasound?IT IS DENSE.Should I avoid Acetimitiphin? NOThen I said "I thought you told me to avoid that?" he said WASN'T MEI asked if I should make another appt. to see him in time. IF YOU WANT TOI asked him what he was calling into the pharmacy, and he said Amitriptyline, and when I asked what it was for, he said SPASTIC COLON. So I asked about that, and he said I present as though I have spastic colon, ie; abdominal pain, weight gain, loose frequent stools.So apparently he thinks the bulbus thing protruding from me on my abdomin, where my liver sits, is nothing. The fact that it is tender and painful must also mean nothing.Obviously I am seeking a 2nd opinion, but .........

UUUUUGGGGGGGGGGGGGGGGGG!!!!!!

Why do I always get the idiots?????

This is par for the course with me, 2 years I have wasted on this Dr.Hopefully I don't already have damage to the liver from scarring. And from my knowledge, I do need to change my diet, not drink, discontinue vitamins and avoid Tylenol. I will do this on my own, but it makes me ill to think this guy calls himself a specialist. If I took his advice I would be in grave danger.I am planning on going to Dartmouth-Hitchcock Medical Center in Lebanon, NH as soon as my PCP can get a referrel and get me in. I am also going there to see a Dr. about Uterine Artery Embolization for my fibroid tumor. This is a very good hospital, equivilent to Boston hospitals. It is a 2 hour ride across the state.

*SIGH*

Bonnie Cole

Oct 21 2002, 03:53 PM

Hello Nancy:

Just putting in my two cents worth here. How could I not?My experience with fibroids and cysts is to use Progesterone cream. Taking off one week each month and using maybe 20 mg. daily. I think I saw somewhere, that you said you were using 900 daily, so not sure what that meant.I'm a bit late posting a message here, now that I see the dates.Up in the area under your breasts (I believe) is also the large intestine, has that been considered?

Bonnie

Pudge

Oct 23 2002, 08:14 AM

I have been using the cream for almost a month now and have to say I have been feeling pretty good. The anxiety has been way down..Anyway since i have been on the cream my periods have been closer together. The first one came after 23 days from the last and now i just got another one and it has only been 17 days.I heard that is normal in the beginning when using the cream.. any comments?????????? thanks Pudge

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