Still trudging along but seeing some improvments!

I am very sorry I haven't been here for so long.    It is SO nice to know I can always come back and talk to you all when I'm able.   I haven't yet checked all of your posts which I have missed.   I will do that soon.  I hope everybody is doing well, finding answers, and getting the help you need!

I am still very busy going from appointment to appointment, test to test, and researching my butt off, but things are looking better!    Still having a lot of symptoms, but some are finally resolving!

I saw my favorite doctor, the little, nutty nephrologist yesterday.    At my last appointment a month ago, this man was VERY upset because my urologist had prescribed a daily antibiotic for my recurrent UTIs.    He was actually yelling at this appointment.    It was very upsetting, but nice to know he was so concerned about my well-being, he was this worked up over that daily antibiotic!   He told me I just CAN'T continue taking a daily antibiotic, and I needed to find a surgeon to reposition my bladder again to stop the UTIs.     I had been getting the UTIs every 7 or 8 days for a couple of months before I started the daily antibiotic.     When I left his office, I felt very depressed and frustrated.    I didn't like taking the antibiotic daily either, but I also did not enjoy that awful pain of a UTI every 7 days!!!!

I wasn't due to see this doctor again for 3 more months, but I had adjusted 2 of my medications recently, and I wanted to discuss it all with him.   I would like to say here that in many cases it is not good to just adjust your medications yourself, but I've been dealing with these issues for a long time, and I know how he thinks, so I feel confident doing this.      I did want to discuss it with him now and not wait 3 more months, so I made an appointment.

Yesterday, he entered the room in a GREAT mood.     That was a good start, and a HUGE relief.  

First off, I wanted to discuss my Florinef prescription.    This is what I take for the hyporeninemic hypoaldosteronism.   I need to take it to keep my blood pressure up to a decent level.      My pressure here at home usually averaged around 100/60 since I started treatment.    Lately it had been going as high as 164/110!!!!!     My pressure at my doctor's appointments might have gone that high at times, due to white coat syndrome, but at home it was usually around 100/60.      I knew there was a problem!   My mother had uncontrollable hypertension.  She died of a stroke.    I do not want my resting pressing at home at 164/110!!    So I cut back a bit on my Florinef.    I assumed that was what my nephrologist would have done    My pressure here at home went back to around 100/60.      Yesterday when I discussed this with the nephro, he was perfectly ok with me doing what I did.  That was nice.      I'm very anxious to get my renin and aldosterone checked again, since the pressure had gotten so high I needed to decrease the Florinef.   I'm wondering if my kidneys are functioning a little better and producing more renin.   That should increase my aldosterone, since renin triggers aldosterone production.      I won't be checking these levels for 2-1/2 more months. 

Then I wanted to discuss my thyroid medication.     A few months ago, he increased this medication.   At this time my FT3 was mid-range, and my FT4 was very low/normal.   My TSH was abnormally low, but I do take natural thyroid medication, so that is to be expected.   This doctor is the ONLY one of my MANY doctors who understands this, and I am so thankful for this!       Well, about a month and a half later, my levels were checked.   My TSH and FT3 were exactly the same, and the FT4 had dropped lower.    I still had MANY symptoms of hypothyroidism, so I took it upon myself to raise my medication again very slightly.     I figured since the nephro raised it a few months ago to get the FT3 and FT4 higher, and it didn't work, it would be ok to raise it again.      The nephro was just fine with my decision to do so.    I asked him if he would have  problem with raising it high enough until we could get my T3 and FT4 up higher, as long as we kept them within the normal range.   He said he thought that was a GREAT idea, that he would love to see my levels near the top of the ranges.     We both agreed it would be best to stay where I'm at for now until I got my levels checked again in early April and then take it from there.     Since some of my symptoms are FINALLY resolving, I'm guessing if we get my levels just  bit higher, these symptoms will resolve completely.    The nephro told me he is not interested AT ALL in my TSH!      It is SO nice to finally have found a doctor who thinks this way!!!    

Third in line for discussion yesterday was the recurrent UTI/daily antibiotic issue.    After what happened at my last appointment I was VERY afraid to even bring it up, but I really needed to.     He was much calmer about it yesterday.   He did tell me it wasn't good for me to be taking an antibiotic every day.   I totally agree with him.      I had actually typed him a letter a couple of weeks ago to let him know just how I feel about several issues.    One of which was that I HATE taking a low-dose antibiotic every day, but even more, I HATE taking a stronger antibiotic 3 days of EVERY week, due to recurrent infections, and that is my only other option at this time, since I can't seem to find a urologist who is willing to perform another bladder lift surgery.     

Ten years ago, I had my bladder lifted to stop the recurrent UTIs.   I had been getting them every week or 2 at that time.   They stopped completely for 3-1/2 years!!!     So I KNOW the bladder lift did have a very positive affect on the UTI situation.    After 3-1/2 years, the UTIs started again.       They started every few months for a while, then every 2 months, every 1, and then every week.   Common sense would cause one to think the bladder had fallen again and needs to be lifted.   However, it doesn't seem that too many doctors have much, if any, common sense.     

One urologist told me the UTIs were being caused from lack of estrogen.  She told me if I started using Premarin, we could get the UTIs down to 1 a year!    That sounded like heaven.   I might add here that I had been taking 7 different supplements to stop the UTIs to no avail!   People swear by all 7 of these things.   They all take just 1 of them with success.   I was taking all 7 every day for many months, and I could not stop the UTIs.     So I finally gave in and started using the Premarin.    The urologist told me it could take up to 6 months for it to work.   After 7 months, the UTIs were happening every week or 2!!!!!    She was stumped.  She still wouldn't admit that my bladder needed lifted again!  

I found a new urologist.     This guy told me my bladder didn't need lifted.   He couldn't tell me why the UTIs had started again after 3-1/2 years of not having them after the first bladder lift, but he would not tell me why they are occurring now.  He had no answers.    He prescribed the daily antibiotic instead.    This was about 3 months ago.   I was so desperate to stop the UTIs and stop all of that pain, I agreed.       I know that low iron and underactive thyroid can both be the reason for frequent infections.    I knew I had had had problems with both of these issues for over 30 years.    So I figured I would start the daily antibiotic, while working very hard to get the iron and the thyroid levels where they belong.    That way my bladder could have a rest too.   

I didn't like this second urologist either.    At my last appointment he laughed at me several times when I tried asking questions and when I made suggestions.      I decided it was time to shop around for yet another urologist.

Yesterday, I mentioned all of this to the nephro.    I told him my urologist told me that my bladder can't be lifted again.  He told me that the mesh that is inserted in there now can not be removed, and more mesh can't be placed up in there due to the increased risk of infection.     (By the way, I am quite aware of all the law suits going on due to this stupid mesh, and I have not ruled this out as the cause of my infections now, but since I had UTIs for a few years before the mesh was in place, I am thinking there is another cause.)     

When I told the nephrologist yesterday that the urologist told me it is not possible to remove the old mesh, he became upset.   He said that OF COURSE they can remove old mesh!   He said ANYTHING can be removed!   He told me that surgeons sometimes tell patients they can't do something because it's too much trouble.   He said when a surgery takes longer to perform than they want it to, they lose money, and it's all about money!      He told me to find another surgeon!     Wow, I couldn't believe he said this!     This man is unbelievable!     He totally LOVES his patients, and he is not afraid to say what needs to be said to help them.     I just love this guy!!!      I told him I will keep searching for a surgeon.       I need this surgery so I can stop taking the antibiotics!

So this was one of the best appointments of my life!     This doctor and I think so much alike, I sometimes wonder if we share a brain!!       I just love discussing things with him, because he makes sense!!

I am going to read the other posts here very soon and try to get caught up with everybody.     Thank you all for letting me babble on here.

Audrey

Hi Audrey

Good to see you back, sounds like you are still very busy solving your health problems, hopefully it will all work out.

Not many posts for you to get through as not many people using the forum these days, most of our original friends have deserted us, hopefully everyone is well and busy doing exciting things.

Take care
Nelly x

Thanks, Nellie.   Yes, like everyone else, I keep working toward better health, and it is very time consuming.    I would love to go back to the days when my biggest issue was worrying about my hair-style.  

I'm very sorry not many people are using this forum.   I'll be honest with you; I have joined other forums trying to help as many people as I possibly can.   There is so much drama involved with many of them, and in many cases, it's just not enjoyable being there.    This is the only forum I'm aware of where there are no arguments, no spite, and people seem to truly care about one another and love each other.    I have been booted from 2 different support groups.    Once for saying positive things about Dr. Norman, and once simply because I was a friend of someone in the group, who the admin had a problem with.     Well, I was not booted from the second group entirely, I was just relieved of my admin duties.   I don't understand how many people think.    I don't understand the meanness.    It's always nice to come back here where I am comfortable.     I am so grateful that you and Edwin started this forum for those of us who were afraid of losing touch.     And now it appears many have left anyway after all of your hard work.   This is very sad.     I wish I could find a way to bring more people to this forum.    I think most people have migrated to the Facebook groups because they are much bigger.     Bigger is not always better!!         I'm very glad this forum is still around!

How are you and Edwin doing?     I hope you have both found some solutions to your own issues and are doing well.    You'll have to get me caught up here.

I would like to add here that 1 of my very annoying symptoms has seemed to resolve since I have increased my thyroid meds and gotten my iron level up some.   I have had heart palpitations for many years.   Over the years, they have worsened to the point that every time I was relatively still, I could feel them, and they had gotten much stronger.   It was very scary.     I have not felt any now for a couple of weeks!   None!    This is so nice!      I will be getting my thyroid levels all checked again in about a month.   I'm very anxious to know where they are.   I'll be getting the iron levels checked in about a week.    Very anxious to see those results too.

Also, I've had to cut back some on my Florinef, which is the medication I take for the low aldosterone.    When first diagnosed with the low aldosterone, I was told to take 1/2 tablet daily.   Then it was increased to 1/2 tablet twice daily.    My blood pressure still was not as high as it should have been, so the dose was increased to 1/2 tablet 3 times a day.      A few weeks ago, my blood pressure was looking pretty high here at home.    Normally, it is the lowest here at home and much higher at my appointments.   Yes, white coat syndrome for sure!    When it started measuring 154/105 here at HOME, I knew there was a big problem!!    When I was first diagnosed, my pressure here at home was around 76/43.    After treatment started, it would be around 90-100/55-65.    So 154/105 was WAY higher than usual!!!      I cut back to 1/2 tablet of Florinef twice daily again, and now my pressure averages 100/60; right where I want it.   I am wondering if possibly my kidneys have started producing more renin, which would trigger more aldosterone production in the adrenal glands.    My renin was low also when fist diagnosed.     I had read that iron is needed for the organs to produce necessary enzymes.     Renin is an enzyme.   I'm wondering if now that the iron deficiency is being taken care of, my kidneys are now able to produce more renin.     I asked my nephrologist about this.    He said he doesn't see my kidneys ever producing adequate renin, but I'm hoping he is wrong.    I would LOVE to be able to stop taking the Florinef at some point.     I will be getting my renin and aldosterone checked again in a few months.

So onward we go, praying for good things in the future!

Audrey