I am back! To Jenipeni and EmpatheticJenny

[4savages]

I have posted in a location where we have posted a litte and then tried in a new spot.  I am back and wanted to touch base with Jenipeni and Empathetic Jenny.

My brain cannot keep track of this board.  I will look for you guys!

Cheryl

[4savages]

Hi,

Just seeing if you are out there.  A 24 hour urine was done again.  And there will be a blood cortisol.  In addition, a salivary Adrenal panel was done.  It checks for cortisol throughout the day, GI intolerance, antibodies of some sort, progesterone, and some sort of parasite.  We'll see.

Hope you are better than I am.  Although things have been a bit better, the stress level is high.

Hugs,
Cheryl

[4savages]

Hi guys,

I am really down lately.  I haven't been on because again, I am disappointed.  I can't be angry with this endo, because he is so nice.  But once again, I am frustrated with hearing that everything is "normal."  I ended up asking him to run more tests, because my symptoms are not normal.

I decided to call an Osteopath in my area I know.  They didn't take my insurance, but they had an M.D. in the office that was a holistic doctor.  I see her tomorrow.  My hope is that she will see beyond the "normal" labs and perhaps try something non-traditional.  I have already spoken to her through email. She suspects I still have endo issues although nothing shows up on tests.  I think she is going to try homeopathy or naturopathy.  I am all for it.  Medicine has let me down for 7 years.   I also contacted a naturopath that used to be an M.D.  She left medicine, because she felt helpless to help patients like me.  Although she doesn't take my insurance, she is willing to cut her fee by 40%.  She thinks she can help.  She believes I am suffering from adrenal fatigue and has some other ideas.  She said she thinks it would only require to visits.  Some changes would be dietary and probably one remedy tailored to my medical issues.  

I have run the gamut of doctors that say "normal."  I am sick of it.  I think there are good docs out there, but puzzle solvers are a rarity.  

I hope you are doing well, Jenipeni and also Jenny.

I will try to write when I know more.  A lot is going on in my life and it is affecting my ability to communicate.  

Until next and hugs,
Cheryl

[EmpatheticJenny]

Hi, chums--

I am sorry to be so slow with replies to each of you, but I have been up to my earlobes in work.

Cheryl, I am THRILLED for you that you finally (finally!!) found a good endo. So often, it seems to work the way it did for you--just when you give up entirely is when something good finally happens for you. Nobody needed to have that turn of events any more than you did, so I was as relieved for you as I was pleased when I read your report.

I am taking Prometrium, and I take the brand name only because no pharmaceutical company manufactures a generic progesterone in an oral form, as far as I know. I wish that a generic were available, since it would mean a lower prescription co-payment.

Thank you, both of you, for warm and kind-hearted wishes for me.  As you can see, after my work simmered down, it went back to a rolling boil again, but I am managing to cope. I see my endocrinologist on Thursday, and I am not sure which direction the discussion will go. If I had done spectacularly well on a regimen of 88 mcg. of levothyroxine a day, the discussion would be straightforward, but I have seen scant evidence that 88 mcg. has been better than 75 mcg. It may be time for me to have a go at taking Cytomel along with levothyroxine.

Jenipeni, I am glad to hear that your husband's hand is almost back to normal, post-surgery, but I am sorry that your report of yourself adds up to "Blah" when all the pieces are put together. No, you did not give us too much information at all! That is what we struggling soul-sisters are here for; to be interested in the details of each other's struggles and to sympathize/empathize in detail. As someone at the forum once said, it is nice to know that you can come here and tell your whole story of the moment and not worry that your fellow members are getting the glazed eyes look (the "Will she NEVER finish talking about her endocrine system?!" look) that we sometimes see when we are telling people in our everyday world about our struggles.

I hope that your camping trip was fun and that you did not have to spend more than a little time with your nose in your books. I know just what you mean, I think, about sometimes having to study during what should be vacation time, just to keep the stress level down.

Cheryl, I am very sorry to hear about your cat. When it rains in your life, it truly pours. Since I am a cat lover, I think I can understand what a heartache your cat's illnesses must be.

I hope that you had a lovely Easter, Jenipeni, and you, too,
Cheryl, if you celebrate. It was cold here in D.C., but at least the sun was shining.

Even though I have been slow about replying to your posts, I have been thinking of you both often. Thank you, Jenipeni, for your "God bless" wish. I am sending both of you a "God bless you" thought in return.

Hugs to you both,
Jenny

[4savages]

Hi Jenipeni,

Glad to hear from you, that you are doing well thyroid wise, and that your husband's hand is doing better.  I can't quite understand the abbreviations.  I do know about the PCOS, because it was thought I might have that.  The rest I don't understand.  I might want to share my fertility experience if you wanted to hear it.  I know you had brought up having children at some point.  But that is for another day.

It sounds like you are working hard.  I am glad you get some breaks, although not a true one.  I hear that from my school days.  And in general.

Hi Empathetic Jenny,

I hope you are doing well.  I know you are also busy.  I basically just wanted to pop in and say hi.

I will write more another time.  I am wiped.  My cat is sick with diabetes and pancreatitis and diabetes.  This is almost more than I can bear.   I am trying to hang in there though and give the meds time to work.

Hugs,
Cheryl

[Jenipeni]

Hi Cheryl & Jenny!

I don't know why but going back to 3/26 I replied on the thread on page 15, not sure if you saw it.  Doesn't matter anyway.

Fantastic news Cheryl that you've found a good endo! Puzzler solver sounds good!  I hope this find (new endo) keeps hope alive in you.  No matter where the journey takes you keep believing that the solution's WILL be found and you will have health again.  Because you will.  

Jenny, I hope you are doing well and your most recent thyroxine dosing is going well.  Hopefully things at work have simmered down and are now humming along at a managable pace.

Hubby's hand is just about back to normal now!  Thank God.  I've been really well thyroid wise - apart from gynecological stuff.  Gyne changed my BCP bcz of PCOS symptoms, and I bled for the first two weeks, had + discharge for a week and now I'm bleeding again.  Hmm.  Menstrual pain has been increased even more than before - don't know if that could be related to the change in BCP? Will persist for 4 more weeks then if still no joy I'm going back to my old one pronto.  I want to take iron supplements because of the prolonged bleeding but I'm scared to as it makes me a bit constipated and those nasty haemorroids are playing up again (they had gone for awhile).  Blah.  Sorry if that's too much information.  

I want to post a question on the other side of this forum but it's always reached it's quota for the day.  It must open up for new questions some time in the middle of my night's sleep?  Have to set my alarm and get up in the middle of the night I suppose...  

You are right Cheryl, I am pretty busy with Uni.  Even now we are having 1 week off classes for Easter but there is still heaps of work to do!!! Gulp!!!  We are going camping for a couple days with friends on the coast so I am really looking forward to that.  But unfortunately I will have to take my books (even if I only do an hour or two a day while we are away it will help keep the stress levels down).

Mmm, my hour is up after having my meds, so I'm off to have breaky now.  Working today.

I hope you both have a lovely Easter - God bless you both!
xo
Jenipeni

[4savages]

You are definitely right about varying doses.  It is just so weird that my doctor basically had me set the dose.  However, some good news is that I found an endocrinologist that is good.  I had finally given up and he turned out to be good.  A puzzle solver.  He told me the information about the Law of LaPlace you had mentioned.  He is concerned with something that he noticed in the report of my CT of the abdomen.  He is going to start with simple blood work and possibly run a test where cortisol is given in pill form and then bloodwork is done the day after.

Are you on progestin?  Just curious.  I am taking micronized progesterone.

To Jenipeni,

Hi.  I hope everything is going well for you.  I am sure you are pretty busy.  You have been in my thoughts.  Hope your husband is doing well.  You can see the update above on me.  I won't know more for awhile.

Hugs to all,
Cheryl

[EmpatheticJenny]

Hi, Cheryl--

How frustrating to have the pharmacy fail to take action and also fail to tell you about it, but how typical of the frustrations that we medical patients commonly endure.

In regard to dosage levels: I do not at all mind your asking, but I think that the answer would not be enlightening. You and I are using different forms of progesterone, so the doses in terms of milligrams are not at all equivalent, and the same could be said about our medical struggles, come to think of it. Our histories and current circumstances are different in major ways. What is right for me might be all wrong for you and vice versa.

It is so difficult to need to make major decisions for yourself. I want to be sure not to make your situation more difficult still by providing ill-suited information. We all have far too much of that already, don't we?

Sending hugs in return,
Jenny

[4savages]

Hi,

I am glad that I pushed for the progesterone.  I was so upset when I found out on Friday that the pharmacy had not ordered the medication on Tuesday.  The excuse given was that there was a computer glitch, not allowing for an NDC number to be entered.  Also, they were afraid that my insurance wouldn't pay, even though they could have called the number I provided for them to get this verified by phone.  It is easy.  I already knew it was covered.  I am planning to use this at night.  My one concern is dose.  I mean they basically let me choose it.  I asked for 25-50 mg of natural progesterone based on research.  How much are you on Jenny, if you don't mind me asking.  I don't have a uterus, but I have read that progesterone helps estrogen work better and helps with hotflashes also.  This is in additon to the effects on the brain.

Because of the pharmacy's mistake, they agreed to compound some suppositories for me on Monday to get me through until the drug comes in to them.  I feel they should have done this on Friday, but customer service has really changed in this country.  I tried an over-the-counter progesterone and it really has done nothing.  I read that in studies, Progest and Prometrium resulted in similar blood serum levels of progesterone.  I just wonder though.  It hasn't seemed to help.

I will look for your response.  Thanks for your input about the progesterone.  It makes me feel a bit better about my decision.

Hello to Jenipeni also.

Hugs to all,
Cheryl

[EmpatheticJenny]

Hi, Cheryl--

I am very sorry to hear that you have been having such difficult times, not only with your symptoms, with the medical profession, too. I am glad that at least there is a positive note or two in your situation.

Thank you for describing the show on public television. For me, progesterone has been the most friendly and helpful of medications imaginable, and I am sure that the physician giving the lecture knew what she was talking about. A reproductive endocrinologist who seemed highly knowledgeable once told me that micronized progesterone (the plant-derived progesterone that has the same structure as what the human body produces) attaches to the same receptor sites that diazepam attaches to. When he prescribes HRT, he cautions women to take progesterone before bedtime, not in the morning.

Given your symptoms, I think you were wise to push for at least trying progesterone to see if it helps. This past December, I thought that the progesterone I was taking might be making the pain from a ligament sprain worse than it needed to be (I definitely have some connections going on between hormones and muscle symptoms). It seemed to me that it did lessen my pain just a bit to not take progesterone, but it only took seven days without the drug before I was startled by pronounced sleep disturbances. After two nights of them, I thought, "Maybe I need the progesterone for more than uterine health," a thought that I am still thinking, because the sleep disturbances stopped as soon as I started taking progesterone again.

I hope that you will get good results with the progesterone that has been prescribed for you...if you can ever get your hands on it! A physician recently commented to me that about 90% of the process of getting medical care is logistics. Reading your post, I thought, "How true!" I am crossing my fingers for you that the three days it will take to get the progesterone will turn out to be actually three days, not an endless number.

With warm best wishes,
Jenny

[4savages]

Hi guys,

Well, I cannot lie, it has been tough.  I virtually disappeared from the internet because the sweats were so bad.  I am on Estradiol and still waiting on a prescription for progesterone.  It has been over one week and the doctor finally called it in.  Then, the pharmacies weren't able to get it.  It is a commercially available product that is rarely used.  I finally found a pharmacist that called until he found it.  It will take three days to get here.  In the meantime, I am using an over-the-counter product called Pro-Gest cream.  I do not have much faith that it will be as effective, but I did read some studies (contradicting) that it worked as well as Prometrium.  I will be using the suppository at a low dose.

I watched a show on public tv.  It was about hormones.  A doctor was lecturing about it.  She said that progesterone does not only act in the uterus (I lack one), but also acts in the GABA receptor sites in the brain causing a calming effect.  She noted that some women could not tolerate it, but disagreed with docs that think women do not need it because they do not have a uterus.  My symptoms are cyclical and I think that progesterone should be tried.

Because I take an active role in my care, it is clear by my doctor's notes (OB) that despite he told me that he thinks this is an indication I am "smart," he does not believe this.  His notes indicated anything but that and my partner was downright shocked at my doctor's notes about the appointment.  My partner was there and he said that the notes were inaccurate and he was bothered by them.  I will not be talking much to doctors in appointments anymore.  I am going to keep comments to a minimum.  I have written a letter to him and want the record amended.  I also want him to know how I feel about it.  He still is a doctor I respect and like, but I am upset with him.  All I provided him with was my symptoms and a brief medical history.  We talked about the endo appointment, because he had wanted me to go to one.  But he had actually made slightly insulting comments about endos and even dermatologists stating that they slept well at night, because they didn't see a sense of urgency in the patients they encountered.  He added that OB-GYN's rarely sleep enough and worked much harder.  I was kind of surprised.  That is why his notes were even more surprising.  He made it seem as though it was I that interfered with an endos ability to do an assessment on me.  This is ridiculous, since when I went in last, I only told my symptoms, provided records, and a brief history.  The endo thanked me for this information and frankly stated that she couldn't help me.  She also said that little was known about female hormones, making replacement impossible for her.  She said my thyroid was fine and that my doctor (OB) sent me there, because when a doctor finds out a patient has had thyroid disease, they think everything is thyroid-related.  She said that my thyroid had been ablated, replacement had been done efficiently, and I was fine thyroid wise.  Additionally, she said that if I took estrogen, it would likely have no effect on my thyroid levels.  She also said that mammograms in women of my age (36) were not a good idea, because women in this age category often have dense breasts and so imaging shouldn't be done.  This is in sharp contrast to what the surgeon who removed my mom's breast in 1996 told me.  She said to get a baseline at 30 and if anything showed up, every year thereafter.  She also recommended annual breast exams and self-exams.  She was firm about it, because she wanted me to take it seriously.

Quite frankly, I am sick of doctors.  I have an appointment with one last endo on April 2.  He is supposed to be good, and I am not holding my breath.  I canceled two appointments with doctors at the end of the month.  I am tired of going into these appointments to wait around for nothing.  I kept the one with my OB only because I have been on HRT and he might want to draw some labs.  Sorry if I sound cynical, but I have been through a lot over the years and have tired of it.

On a positive note, despite the sweats, I have been able to interact with my kids.  When the sweats were bearable or gone, I took advantage of the time.  I believe that I am going to send them back to school for the rest of the year.  It is my thought that the sweats are not from illness, but I was confusing perimenopause with sickness.  I do get sick more, but these sweats are too different.

Sorry for the length, but I wanted to update you guys.  

I hope your time at the hospital is going well Jenipeni.  I also hope you and your husband are doing well.

I also think of you often Jenny and hope things are looking up for you.

Hugs to both of you,

Cheryl

[4savages]

Hope to hear from you and Jenny soon.  I am glad you found my post.

Cheryl

[EmpatheticJenny]

Hi, folks!

How are you doing, Cheryl? Are you hanging in there? I hope so; I have been thinking of you often.

Jenipeni, I just read your post to ChitChatNine, before you hurried out the door for your shift at the hospital. I hope it went well.

E-hugs to you both,
Jenny

[Jenipeni]

Hey Cheryl!!!!

So happy to see you're with us again!

Unfortunately I am running out of time this morning (see post to ChitChatNine just before this one), so I'll have to post properly to you after I get home after work today.

Gotta run haven't done my hair or face yet - but very glad to see your name pop up!

Cheers!
Jenipeni