what have I done to myself?

Discussion in 'Aldactone (Spironolactone)' started by kdwmw, Aug 31, 2009.

  1. kdwmw

    kdwmw New Member

    A year ago I went to a purported hair expert in NYC who is often mentioned on this site. I suspected/hoped I was one of those hormonally vulnerable women since all my labs come back normal inspite of the fact that I was losing 200+ hairs a day. He prescribed his typical...spiro & yaz...after a brief chat & glance at the labs I brought with me. I couldn't wait to start the meds & stop my hair loss!

    I was on that regimen for 7/8 months before my local endo (who tests me every 3/4 mos. to treat my hashimotos) told me that I was hyperkalemic (dangerously high potassium) & to get off the spiro asap. I did, but wasn't too worried b/c my endo has never had any empathy re: my hair. I just thought they were being dramatic.

    Today (6 weeks after stopping spiro) I am still dangerously hyperkalemic. My endo & pcp say get off the Yaz, too. I'm going in for another blood test in a couple of days & will probably be referred to a nephrologist. I may have permanent kidney damage! My pcp is telling me this is very serious. People have heart attacks, kidney failure, fall comatose & die because of hyperkalemia! I said I really feel fine! She says it can be asymptomatic. I can't believe an ethical dr. would prescribe that dose of spiro/yaz & send someone off to have a heart attack or kidney failure & die!

    By the way, after my first test came back showing hyperkalemia, my Houston dr. faxed my results to that renowned dr in NYC, I called him & emailed him. Not a word back! Love em & leave em (dead) must be the motto. I'm so angry. I have a small child & a life I love inspite of my hair status. Is this what I deserve just because I want to look like most other women WITH HAIR?!?!?!?
    Angela likes this.
  2. Kellie246

    Kellie246 New Member


    This is so awful, I'm sorry all of this has happened to you. I can imagine you must be angry and scared--and have every right to be! I hope there is something they can do to help you and get your body back to normal. There's got to be. Keep us updated on the results of the blood work. Until then I'll be sending prayers and happy thoughts your way.

    :>Hug. Hang in there.
  3. kdwmw

    kdwmw New Member

    Kellie & Patti,

    Thanks for your nice notes. I'm feeling less freaked out today! I'm glad I have a place to come for advice & understanding. I needed to vent, but I also hope to let other women know to be extremely careful with spiro. I wish I'd found this site a year ago!
  4. Angela

    Angela Moderator

    I'm so sorry to hear about your experience. I have a really stupid question...
    How come your endo and pcp didn't send you to a Nephrologist sooner? Did they send you for a ECG and heart specialist too?
    I wouldn't wait till they send you, you should get in there now.

    Its so difficult to know who to trust when it comes to doctors. Finding doctors that will work as a team is almost impossible.
    Can you imagine how many people would be better in this world if doctors weren't so separate? We go to different doctors for different things, but there is no one doctor that looks at ALL the charts and tries to make sense of our fragmented care.

    I once heard that people that get pissed off a lot also get lots of urinary tract infections, and that anger is tied to the kidneys. (Get it...Pissed off?) Stupid joke, but the person that told me that wasn't joking. If it is true that anger is tied to the kidneys, maybe try to be a little more calm for their sake. I know one of my daughters used to get angry all the time when she was younger, and wouldn't you know it!...she had reoccurring UTI's. :eek:
    Its just a thought.

    In the meantime, you will be in my thoughts, and I hope the treatment they are giving you helps to reduce the amount of potassium you have. Are you on diuretics?
  5. Denise B.

    Denise B. New Member

    I'm so sorry that happened to you. Your post makes me very angry and sad. Angry that we depend on these docs to take care of us and lots of times they don't. Sad that they did not catch it sooner.
    I have an appointment with that doc this month. It makes me skiddish now to hear what you said. Its not cheap to see him either. I am soooo hoping he could give me some answers that I'm not getting from my docs where I live. They are not very empathetic to my hair loss. I too am on spiro but have not had any problems.
    I hope very much that your health problems don't get worse.
  6. kdwmw

    kdwmw New Member

    Just an update on my blood work...today I got good news that my potassium is down:eek:. I'm very relieved, but sad & guilty feeling that I was so distraught over my hair loss that I unknowingly put my physical health in danger. And it didn't even work! I know I'm just one of many ladies on here desperate to find the answer.

    And Angela, you are right...I have talked to 6 different drs. in less than 2 years (not to mention every friend, family member, pharmacist & hair dresser within ear shot!). I'm like a broken record & no one has been able to help me. And no, they don't work together, thus the confusion between me, my endo & pcp re: going to the nephrologist.

    Anyway, thanks for good thoughts:>. I'm feeling like myself again & bracing myself for the next big shed. k
  7. kawawa

    kawawa New Member

    Hair loss is a journey for answers, but mostly they don't come. Then it becomes a journey of acceptance. I hope your shedding stops, so that your growth can catch up and give you a break from the turmoil.
  8. Denise B.

    Denise B. New Member

    I'm glad your test results are better. I go see the doc next week. My hair is still shedding. I hope he has some answers. I feel so guilty feeling bad about my hair when there are fair worse things. Its just hard day by day seeing less and less hair. :(
  9. kdwmw

    kdwmw New Member

    Yes, it's hard! And the less hair I have, the LONGER it takes to get ready to go anywhere!! How unfair.......
  10. Gloria

    Gloria New Member

    yeep I know the feeling. Before i got my hair piece I would always want to do my hair last and that was a dissapointing feat. But now I just slap that hair piece on and say a little prayer that it does not look too wiggy and go on my way. God Bless you on your journey. Not everyone has to restort to a hair piece so I will pray that your hair grows back. God is in Control.
  11. Angela

    Angela Moderator

    I am so happy that your levels came down. I hope that you continue to recover!
    Don't beat yourself up about it. We all want answers and we do try whatever we can to make the hair loss stop. It shows that you care about what is happening to you and that you are proactive in finding something that will work. It takes strength to do it. If a doctor can unknowingly give a medication and he is a physician, then there are bound to be times when we make a wrong choice too.
  12. sunny4458

    sunny4458 New Member

    KDWMW, how much Spiro were you taking and for how long? I am on it as well, and get frequent blood tests, but didn't know it could be asymptomatic!
  13. kdwmw

    kdwmw New Member

    Hi Sunny,

    I was on 200mg/daily plus yaz, which also has a small amt. of spiro in it. Just watch your potassium thru. blood work. Normal is between 3.5 & 5. Mine was in the high 6's...hyperkalemic, but I didn't feel bad at all. I just wanted others to know that high potassium can be dangerous even though we feel just fine. I was not very informed when I started spiro (my own fault).
  14. sunny4458

    sunny4458 New Member

    Wow, my Dr did warn me and would not give me more than 100mg, but I read you need 200mg to help with the hair on the head. 100 is good enough for the hair on the chin. So I ordered online and am taking 200mg. I will get checked right away.
    What we won't do for our hair!
    What kind of hair loss do you have?
  15. kdwmw

    kdwmw New Member

    I don't even know what kind of hair loss I have...I was going with androgenic alopecia after reading a book on it, but my hormomes are 'normal'. I think it may be due to my thyroid disease. Even though I maintain normal level TSH w/meds, I think the initial flux in levels started my hair loss. Is that TE? I don't know. I do have a derm appt. in a week & am going to see if I can get a scalp biopsy. It's just for peace of mind, really. Getting an 'official' diagnosis seems like progresss. haha:confused:
  16. Denise B.

    Denise B. New Member

    I was going to the same derm for yrs. and as many times as I told him about my hair loss he never once did a scalp biopsy. He just glossed over it. At least yours is doing something for you. Needless to say I fired him and I am looking for a new derm.
  17. sunny4458

    sunny4458 New Member

    Yeah, it's TE if it is Thyroid. But it can be Chronic TE especially when you are on meds for the first time. It takes awhile for your body to get back to normal regulation after being a certain way (hypo) for so long.
    The reason why it may turn into AGA is because if you go through so many cycles (resting, fallout, resting) then your hair ages much faster than if the cycles were normal. You end up having hair you might have when you will be 80. That is how one DR explained it, it makes sense.
    Is your hair loss everywhere and fast? When the hairs fallout are they long, generally and not just short ones from a certain area?

    I refuse to have a biopsy because, 1) It looks painful! 2) I don't want to be missing skin as well as my hair. 3) How can one little biopsy in one place tell you evrything about something so complex. Some of the same treatments will help either way because both hair loss problems are related to DHT.
  18. kdwmw

    kdwmw New Member

    That does make sense. Yes, my HL is overall thinning; no 'bald spots', just not dense anymore. When I hold my hair up I can see thru. it to my scalp. The hair that comes out is mostly long healthy looking hair from all over, never 'clumps' like some women describe. So, do you have thyroid problems and TE, also? When did you start losing your hair? Do you wear extra hair? I've been shopping a bit....ugh...so sad...

    The biopsy thing...you're probably right, but I just get so desperate! I was looking at a site where you can send in a hair sample for analysis. I showed it to my husband & asked what he thought. Scam? Worth it? He said do it if you need to, but really how will it help? I DON'T KNOW! I guess nothing does.
  19. Angela

    Angela Moderator

    If you feel that you would benefit from a biopsy, that wouldn't make you desperate. You would like some answers. Its true that biopsies are not the "end all, be all" for determining the cause or kind of hair loss you may have, but in the off chance that it *does* show something, it can give a better direction in which to go.
  20. kdwmw

    kdwmw New Member

    Thanks Angela! I AM still in that "I need an answer" phase. I'm also in that "I want to keep my hair" phase............