Hi all. New member but long time lurker here. I'm desperate for some advice, so I came out of hiding and finally registered. ;D
Has anyone experienced severe side effects from Spironolactone? I honestly feel like it's killing me. Within one month of starting it I began experiencing neuropathy-like symptoms in my feet. Then I developed debilitating pain along my clavicles, in my shoulders, and in my neck (moving up into my head and jaw). It's like a mix of traditional, achey muscle pain and SUPER SHARP, stabbing, electric pain that screams "NERVE ISSUES!" I'm also really tired most of the time and feel kind of depressed, although that could just be from the pain.
I don't understand what's going on. Is this hormonal? Is it due to nutritional effects? I know Spiro can deplete folate. And of course there's the potential potassium issue, but I just got my level checked recently and I'm fine.
I did a bit of poking around on the Internet and found other people talking about how Spiro caused really bizarre side effects that, of course, the doctors insisted were totally unrelated. One woman said her terrible symptoms took an entire year to clear up.
What's really confusing to me is the conflicting information on how Spiro really affects hormone levels. Some sources say that it raises estrogen (and potentially lowers progesterone). Others say it can lower estrogen; one website said it straight-up has anti-estrogenic effects. Who's right? ??? I feel lost.
Does anyone have any advice for me? I stopped the Spiro almost a month ago now, but still feel terrible. Maybe a bit better, but still... Pretty awful. The pain can just get brutal.
Lack of water could be the culprit. Have you talked to a doctor about this?
Hi, I've been on Spiro for 15 months but am not experiencing those symptoms. I agree either KAT, what is your water intake like?
PS Cola, coffee, booze etc doesn't equal water... :)
I used spiro for 7.5 months (plus oral E). My side effects:
- Diarrhea and Irritated bowels
- Constant weight loss to the point of underweight BMI.
But not a lot more apart than that. Things sort of improved on cyproterone acetate.
Were you taking any estrogen while on Spiro? Lack of sex hormones could bring on these symptoms as well, perhaps.
My water intake is very good. I have to pee constantly! ::) I also don't drink any soda or alcohol. Just water, milk, and occasionally grape juice with no added sugar.
I haven't been taking any estrogen. :-\
I did see someone on this forum (I think) talking about how they got debilitating spinal pain from Spiro, but that it got better with estrogen.
You might want to get your potassium levels checked... sounds like classic hyperkalemia symptoms. Cut back on milk, it's actually really high in potassium.
I experiences something similar for 2-3 days because I didn't really adjust my diet at all after starting HRT and it turns out a lot of my favorite foods are big in potassium.
No milk. No bananas. No sweet potatoes. No tomato juices / sauces. No citrus juices.
Also you probably want to start Estrogen. It's definitely not healthy to be more than a few months without a sex hormone in your system.
Quote from: PopGeek on October 02, 2014, 07:49:29 AM
My water intake is very good. I have to pee constantly! ::) I also don't drink any soda or alcohol. Just water, milk, and occasionally grape juice with no added sugar.
I haven't been taking any estrogen. :-\
Well, there might your culprit! These might be menopausal symptoms due to not enough estrogen in the absence of androgen.
My potassium level when I started Spiro was 3.9, which is on the low side. These symptoms started within a month of taking Spiro, and I had my levels tested shortly thereafter. They were a 4.5, which is pretty ideal.
I think hyperkalemia usually presents with nausea and weakness...? Low potassium is usually when you get muscle pain and cramping, I thought. There's some overlap with the symptoms though, which makes it confusing.
I stopped the Spiro about 3.5 weeks ago now, so my body should be excreting potassium normally...I think? I stopped cold turkey too. God, I know, that's the wrong thing to do, but I was in so much pain and no one was helping me. I'm in-between doctors right now too, since I just moved. My doctor was supposed to give me a recommendation, but he's dragging his feet as usual.
I've got a friend who just started Spiro a few weeks ago, although just for acne. She's already seeing results, but unfortunately I think I've scared her socks off with my personal situation! I was sharing some info I'd found during my research, since she knew I was on it, and she's concerned about what it'll do to her now. I think she's worried about her estrogen since her levels were low-normal. Her dermatologist apparently knows basically nothing about the drug – he just prescribes it. Seems like most doctors are like that nowadays. :-\
I've been trying to help her out since I'm already constantly looking for research papers/accounts of peoples' experiences, but even I'm confused about the effects this drug can have.
I wish I had never gone on it. :( My doctor made it out to be this super safe drug with only mild, temporary side effects.
perhaps increase your sodium intake....and see if you get better
Spiro is a shotgun blast to the endocrine system and does much more than lower androgens. It screws up the mineralcorticoid balance and raises cortisol. There are several studies and a lot of anecdotal evidence that shows most trans women do not need an anti-androgen if you are taking an adequate level of E. If you want more info on this, PM me.
I only drink soda and nothing like that is happening to me, but then I'm at a low dose so that might be it.
Quote from: JessicaH on October 02, 2014, 08:34:19 PM
Spiro ...and raises cortisol.
quiet the contrary honey, spire inhibits the production of cortisol
just sayin !
Spiro or maybe it's estradiol have my bones aching. Why I'm going to just hurry and get castrated. I'm not with taken all these pills
Quote from: Julia (Apple-Whatever) on October 02, 2014, 05:32:57 AM
I used spiro for 7.5 months (plus oral E). My side effects:
- Diarrhea and Irritated bowels
- Constant weight loss to the point of underweight BMI.
But not a lot more apart than that. Things sort of improved on cyproterone acetate.
So you take "cyproterone acetate" and spiro ?
Quote from: TinaVane on October 03, 2014, 01:00:57 AM
So you take "cyproterone acetate" and spiro ?
No. On January 2014 my endo switched me from spiro to Androcur. I'd rather get an orchi and lower the quality of future SRS than taking spiro again. The only other option I have is flutamide, but since it is more toxic than cypro...
Quote from: peky on October 02, 2014, 09:00:03 PM
quiet the contrary honey, spire inhibits the production of cortisol
just sayin !
"The spurious elevation of plasma cortisol levels as determined by the Mattingly method in patients treated with spironolactone has been well established.2,3 Awareness of this complication will prevent unnecessary investigation of abnormally elevated plasma cortisol. Wood et al3". http://jama.jamanetwork.com/article.aspx?articleid=348312 (http://jama.jamanetwork.com/article.aspx?articleid=348312)
Quote from: Julia (Apple-Whatever) on October 03, 2014, 01:37:57 AM
The only other option I have is flutamide, but since it is more toxic than cypro...
No, bicalutamide, safer than flutamide. Ask your doctor about it. You'll see...Quite safe.
Quote from: JessicaH on October 03, 2014, 08:51:57 AM
"The spurious elevation of plasma cortisol levels as determined by the Mattingly method in patients treated with spironolactone has been well established.2,3 Awareness of this complication will prevent unnecessary investigation of abnormally elevated plasma cortisol. Wood et al3". http://jama.jamanetwork.com/article.aspx?articleid=348312 (http://jama.jamanetwork.com/article.aspx?articleid=348312)
but this was noted in only one patient. Is this a common side-effect? Never heard of this before...
Quote from: KayXo on October 03, 2014, 11:10:05 AM
No, bicalutamide, safer than flutamide. Ask your doctor about it. You'll see...Quite safe.
Last reply or I will end stealing the thread... Options are fairly limited with the social security endo. Spiro / Cypro / flutamide (this last one was prescribed by the old endo but not by the current one), and oral estradiol or patches. For further questions about this, please, in a PM
Quote from: JessicaH on October 03, 2014, 08:51:57 AM
"The spurious elevation of plasma cortisol levels as determined by the Mattingly method in patients treated with spironolactone has been well established.2,3 Awareness of this complication will prevent unnecessary investigation of abnormally elevated plasma cortisol. Wood et al3". http://jama.jamanetwork.com/article.aspx?articleid=348312 (http://jama.jamanetwork.com/article.aspx?articleid=348312)
Touche mon ami, I stand corrected... :)
I am a cis woman. I started spiro three days ago for hormonal acne. I am having severe muscle pain, no appetite and an upset stomach. I don't know what to do. I am so sorry to dump my trivial problem on your ladies, but any help or advice? I don't know if I should be scared or if this is just typical when adjusting to hormonal drugs. I am 38 and have an IUD. On nothing else but Flonase and an occasional ambien.
If by muscle pain you mean muscle cramping you're most likely dehydrated. Spironolactone is a diuretic in addition to it's other properties it makes you dump a lot of water and sodium but retain potassium. Drink lots of water, be careful of potassium laden foods like potatoes and bananas and CALL YOUR DOCTOR.
:
April 22, 2015, the day of my first face to face pass in gender neutral clothes and no makeup. It may be months to the next one, but I'm good with that!
Being transgender is just a phase. It hardly ever starts before conception and always ends promptly at death.
They say the light at the end of the tunnel is an oncoming train. I say, climb aboard!
Think outside the voice box!
If it is from sodium loss and dehydration the problem will clear up within hours if you eat some salt and drink some water. Try at least 1/2 to 1 tsp salt and then drink a couple of liters of water over an hour or two. You also may need to supplement magnesium. Most people do need that, even those not on spiro.
Sent from my iPhone using Tapatalk
Hi Kristina, welcome to Susan's Place! Good advice already given here. Water means water, though. Other drinks don't count. Spiro kicked my ass on starting and on dosage increase, but the uncomfortable symptoms disappeared rather quickly. The "Are you sure you're still alive?" LOW blood pressure continued, though. :)
Hugs, Devlyn
Quote from: Kristina18 on September 24, 2017, 01:58:01 PM
I am a cis woman. I started spiro three days ago for hormonal acne. I am having severe muscle pain, no appetite and an upset stomach. I don't know what to do. I am so sorry to dump my trivial problem on your ladies, but any help or advice? I don't know if I should be scared or if this is just typical when adjusting to hormonal drugs. I am 38 and have an IUD. On nothing else but Flonase and an occasional ambien.
Hello Kristina, Spiro is an diuretic. If you end up dehydrated, you can easily show the symptoms you have. Drink a lot of water and feel free to eat all the salty food you like. It's one of the bonuses of this stuff. If your symptoms cntinue after you've hydrated properly and ingested enough sodium, then it's time to get back to your Dr.
Quote from: Dee Marshall on September 24, 2017, 02:28:38 PMDrink lots of water, be careful of potassium laden foods like potatoes and bananas and CALL YOUR Doctor!
Potatoes aren't especially potassium rich, are they? First Google hit for foods that are lists these:
Avocado
Acorn squash
Spinach
Sweet potato
Wild-caught salmon
Dried apricots
Pomegranate
Coconut water
White beans
Banana
Quote from: Lucy Ross on September 24, 2017, 07:11:36 PM
Potatoes aren't especially potassium rich, are they? First Google hit for foods that are lists these:
Avocado
Acorn squash
Spinach
Sweet potato
Wild-caught salmon
Dried apricots
Pomegranate
Coconut water
White beans
Banana
I had heard potatoes but would be more than happy to be wrong.
:
April 22, 2015, the day of my first face to face pass in gender neutral clothes and no makeup. It may be months to the next one, but I'm good with that!
Being transgender is just a phase. It hardly ever starts before conception and always ends promptly at death.
They say the light at the end of the tunnel is an oncoming train. I say, climb aboard!
Think outside the voice box!
Potatoes are a good potassium source. However, in my experience you can still eat them several times a week without driving your blood potassium level too high. The only caveat is that you aren't eating something else also that's way high in potassium.
In my most recent blood test my potassium level was towards the upper end of normal with eating white and sweet potatoes a few times each week and spinach and avocado nearly every day.
It also might make a difference if you work out a lot and lose those electrolytes through sweating.
Sent from my iPhone using Tapatalk
Welcome to Susan's Place Kristina18, In the western diet, Orange juice, bananas and potatoes are the big sources of Potassium. There are others so you need to check levels for anything you eat. I learned this years ago while dealing with a kidney patient as accumulating potassium could be deadly and they need to very careful about this. One of the tricks with potatoes was to slice them thin and allow them to soak in water before cooking. It leaches some of the potassium out of them but not all of it.
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PopGeek,
Hello! Cis-woman here. Sorry for invading this space, I just am at the end of my rope with this nerve pain.
Did you ever find any kind of relief from this pain? I stopped Spironolactone about a month ago and within days of stopping, I started getting terrible muscle and nerve pain that seems to only be getting worse. I have had all of my levels checked, and everything has checked out fine with my B12 being borderline low but not necessarily low. I've also had changes in vision. My doctors are skeptical about the Spiro causing the nerve pain, but I've now seen multiple people who have gotten nerve pain after taking this medicairon. Please let me know if you got to the bottom of this!!
By the way, my water intake is great. I have made an extra conscious effort over the past month to drink more water and I've been drinking quite a bit with no relief. I am just hoping so badly that this isn't permanent, the idea scares me so bad.
I wasn't sure whether it was the spiro, estradiol, stress, or diet changes, but I did have muscle cramp, circulation, and nerve issues off and on for maybe a month or so after being on spiro + estradiol for about 6-8 weeks. It's been gone for about a month now though, so I'm guessing it was a temporary adjustment period of some kind, at least in my case.
I mostly had tingling and burning in hands and feet, worse with lots of pressure (too much jogging for example), and a lot more muscle cramps. Making sure I got enough water and magnesium helped a lot with the cramps, and I did end up with a few pinched nerves due to muscle issues that I needed physical therapy to resolve (very old problems that just got pushed over the edge with a little more muscle tightness), but things seem to be fine now.
I don't know if it just resolved with time or due to me being more careful with diet, but I've been making sure to get enough (but not too much!) salt, magnesium, b vitamins, and iodine (in case of any minor thyroid issues).
Edit: given that I'm a bit overweight, I was super worried about diabetes, so I got multiple fasting and non-fasting blood sugar tests and an a1c while this was going on and they all came back totally normal. All other blood work was normal as well.
I never did figure out what was causing my symptoms or why they went away, but as long as they're gone and don't return, I don't see a point in worrying about it.
Regardless, talk to your doctor about it, especially if it doesn't resolve after a few weeks with diet improvements.
I've been on Spiro for 25 years for congestive heart failure. Neuropathy is generally caused by diabetes. I got that too. Besides destroying my sex life it has done little else than make me pee. Which plays havoc Because the moisture does not make it to soften the stools.
Hello all! Hope you had a great holiday if you are celebrating! I just wanted to follow up to see if anyone found a cause or relief for nerve/muscle pain after taking Spironolactone. I am 5 months from my last dose and I'm still having issues that my doctors can't seem to give me insight on. I haven't gotten my hormones (other than thyroid) tested yet so I wonder if that would be a good route to try, especially considering I've had irregular periods since all of this started.
periods? were you taking this for acne?
I was taking it because my physicians thought I had hyperaldosteronism that was causing my hypertension. They found out after a CT that I don't have adrenal adenomas like they thought and they discontinued the Spironolactone soon after. I only correlate the periods because I know Spironolactone can affect hormones.
did your adrenal glands get straightened out? Cuz' if they're still creating an adrenaline surplus you could be experiencing your problem directly from that. If you're not getting enough potassium in your blood, your present issue could be directly tied to that specifically.
I'm honestly not sure about the adrenal glands, they haven't really re-tested my aldosterone since the CT disproved their adrenal adenoma theory months ago. I've had my potassium checked a handful of times since the pain started and it's been normal or extremely close to normal range (I had one measurement that was just barely below the reference range, followed by a normal one two days later).
Quote from: PopGeek on October 01, 2014, 11:17:01 PM
Hi all. New member but long time lurker here. I'm desperate for some advice, so I came out of hiding and finally registered. ;D
Has anyone experienced severe side effects from Spironolactone? I honestly feel like it's killing me...
...
Does anyone have any advice for me? I stopped the Spiro almost a month ago now, but still feel terrible. Maybe a bit better, but still... Pretty awful. The pain can just get brutal.
Hi PopGeek
I had a horrible time on Spiro about 10 years ago and had to change meds. At the time I had the usual issues with peeing a lot, and drank alot of water to balance that out, but as well as the peeing I just felt horrible.
I had a low grade fever, and generally felt like I had some sort of flu virus. I don't recall the exact details but when I went back to the Endo, she found some liver levels that were elevated, and changed me from Spiro to CA. Since then each time I've been on hormones I've had CA instead of spiro and had no problems. Although it may be rare the odd person may not tolerate Spiro well (& I was one of those). Another good reason why it's so important to have the care of a good doctor or Endo to help look after you.
Love & Hugs
Anna
Hi Anna. Just a heads up but the OP origionally posted nearly 5 years ago. So this thread is pretty necroed.
Quote from: luckygirl on December 27, 2018, 04:23:27 PM
Hi Anna. Just a heads up but the OP origionally posted nearly 5 years ago. So this thread is pretty necroed.
Still good information though.