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Strange new sensation after starting upped HRT dosage.


Guest Risu

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I went to bed around 5 am this morning. I am not usually up this late but I was having too much fun with my friends online. Before going to bed I wound up drinking about 4 cups of milk.

Also, Yesterday was the first day I started an increased dose of Spiro as part of my HRT.

At 8:30 I woke up from my pre-work nap with an extremely dry mouth and a persisting sensation in... the upper area of my lower left quadrant, or the lower area of the upper left quadrant. I am worried that something may be happening with my kidney on that side. It doesn't feel muscle related and it doesn't hurt, but its a very unsettling bordering on pain, could become painful feeling. I try to drink lots of fluid and keep hydrated.

If I remember correctly the liver and appendix are on the right side of the body... I can't think of anything else in that area besides my kidney. To my knowledge I don't have kidney stones, though its entirely possible... I am just worried this may be HRT related so I am posting here to see if:

Any others here have had a similar thing happen and what happened with you.

Also, I know the general response is to see or ask my doctor. I already left a message with his office but if I am lucky I can expect a call back in 1-2 weeks. And that's if I am lucky.

Also, like many others I don't have insurance. I just spent $254.99 having my prescriptions for my HRT refilled and another 160 to my eletrolysist for having to cancel an appointment at the last minute while being sick with the flu last week, and for having my usual appointment last week.

To put it simply I am broke and can't afford a doctor.

So any other more helpful ideas, suggestions, shared experiences would be helpful.

Thanks in advance.

~Risu.

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  • Admin

Risu, I have not experienced such pains, and I doubt it has anything to do with your HRT meds. Someone else may be willing to suggest possible causes, but there is no way anyone can tell you for sure what the problem is. I'm afraid you are going to have to see a doctor if it persists.

I am curious why you pay so much for HRT meds. If you have Spiro and some form of Estradiol, most discount pharmacies will have those meds for $5-$20 for a 30 day supply. Even estradiol patches shouldn't cost near that much. You should check around.

I hope you feel better, hon.

HUGS

Carolyn Marie

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Guest Robin Winter

I don't know, I never experienced anything I would consider to be painful, though for a while I did have a persistent sensation that made me think I had to pee all the time. That's since gone away though.

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Thank you both for your replies.

I go to walgreens pharmacy so maybe that is why I pay so much, though when I went to walmart it wasn't much cheaper. I also get 3 months at a time and it is a fairly high dose of Spiro. I'm not sure why my doctor doesn't write the scrip for one month with 2 refills, plus he recently added Progesterone/Prometrium to my regimen, though I haven't started that yet. I will ask the ladies at my support group which pharmacy they use. I know our LGBT center had a clinic but not sure if they have a pharmacy.

Anyways, thank you both again. I am hoping at worst its kidney stones and not kidney damage... my luck though it will be something that they will want me to go off my HRT for *sighs*.

Only time and a doctor will be able to tell. In the mean time I will hope for the best.

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Wow those prices don't sound right at all. My E is like $20 something for 90 days at Wallymart. Not sure about the Spiro.

A kidney stone will usually start out as a dull pain that may go away if you change your position. It may be constant or may have a slow throbbing. It may go away and you not feel anything for quite sometime before it acts back up. I do not think Spiro would cause one, at least not this quickly, but maybe the diuretic effect of the Spiro is causing an existing one to act up.

It could also be a slight infection in the area or many other things. If it gets too bad of course you should go to a ER or urgent care center.

You are describing the correct quadrant. Pain from you liver would be more on the front side of your body and is mainly on the right side but extends to the left.

Mia

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Thanks Mia very much.

It seems like perhaps kidney stones or infection. I am prone to infections due to avoiding public restrooms during my school years and early 20s at work. I could hold it forever but there is a price for that. Now Infections seem to pop up from time to time but its usually a burning sensation in my bladder.

This is more the dull pain you described, and it is now affecting the same place on both sides. At the moment not too bad and not radiating. I'll go get some cranberry juice and hope that helps. It just seemed so odd that the day after I start taking more spiro something happens but you're right its probably pre-existing.

Thanks very much again. Greatly appreciated.

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Hi Risu,

If it is on both sides then it is not going to be a stone which is GOOD news.

I have gotten slight infections at times in my kidneys (usually just one) and the cranberry juice works wonders.

Good luck.

Mia

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Thanks Mia very much.

It seems like perhaps kidney stones or infection. I am prone to infections due to avoiding public restrooms during my school years and early 20s at work. I could hold it forever but there is a price for that. Now Infections seem to pop up from time to time but its usually a burning sensation in my bladder.

This is more the dull pain you described, and it is now affecting the same place on both sides. At the moment not too bad and not radiating. I'll go get some cranberry juice and hope that helps. It just seemed so odd that the day after I start taking more spiro something happens but you're right its probably pre-existing.

Thanks very much again. Greatly appreciated.

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  • Admin

Four glasses of milk just before beddy bye time, and a dry mouth three hours later for me would indicate a lactose intolerance issue in the lower stomach, and going into the intestines. (huge gas bubble!) along with elevated blood sugar from the lactase (milk sugar). I am on Spiro and it does get rid of the water faster, and can make things below the stomach slow down a little bit. Dehydration the first day or two after upping a diuretic and cause constipation.

Call the local ER if your doctor won't get back to you in less than two hours, or at least have a nurse screener call you. OH YEAH, let the state medical board know about the delay in call backs too.

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Today things are slightly better. The feeling is still there but not as bothersome. Just an odd and dull sensation in my back on both sides.

I spoke with the guy who gave me the flu that had me down for 2 weeks, and which I am still recovering from even this week. He is having the same problem and he described it as "a lung stuck on a rib" (obviously inacurate) or bruising to the lungs from too much coughing. The problem is I have been coughing more than he has and what coughing I have done isn't much. So not sure what to make of it. I think I can rule out pneumonia since I haven't been coughing up anything and for the most part I feel better.

Since it is not an isolated thing though, I'm going to hope that it will get better whatever it is.

My therapist looked my doctor up on health grades.com and other such sites and told me that he had stellar reviews, with the exception of that he spends too much time with patients and is often late. He is pretty well qualified to treat me as he has done multiple programs with UCLA and when he was doing his internship one of the doctors he was working with treated Christine Jorgensen, which is part of how he got his start working with transgender people in internal medicine.

If I wanted an immediate reply I could call and leave a message on his cell phone through his emergency mail box extension. It's not so much whatever is going on with my back that I need to speak with him about so much as starting progesterone. My pharmacist had some concerns that I feel I should double check with my doctor before starting to take it, and since I am not due to take it until the 12th of next month I am in no immediate hurry for a call back.

Regardless... it is pretty poor practice to take so long to call someone back. I'm not sure where the hold up is. Is it him, or is it his staff? I always know how to get a hold of him if I have to. I just don't want to abuse that right now.

Meanwhile I thought lactose intolerance made you ill when consuming products containing or made from milk? Milk doesn't make me sick at all... I just found it odd to be so dehydrated after having drank so much of it but I will keep that in mind and ask my doctor next time I speak with him. My grandmother is lactose intolerant and it does make her sick when she eats ice cream and such.

Thank you again for all of the replies.

~Risu.

As for what my pharmacy (walgreens) charges me for HRT... I just double checked the receipts. Here is the break down and boy am I surprised:

Estrogen 3 months supply at prescribed dose: Retail price: 181.09, what I paid 48.00

Spiro 3 month supply at prescribed dose: Retail price: 286.59, what I paid 182.14.

Progesterone.. 5 pills, partial fill on the prescription: Retail price:39.50. What I paid 24.83.

Total... so far: 254.97

So I will definitely be sure to check with the ladies at my support group tonight and see what they.

Thanks all again!

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  • Admin

The Spiro in particular seems ridiculously high. My 30 day supply cost me less than $15 at an LGBT clinic pharmacy. Walgreen's generic list (on-line) shows standard strengths of Spiro at $12 for 90 pills. Something is not right.

Carolyn Marie

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I have had pharmacies wanting to charge me $240 just for a 3 months supply of spiro alone. I would shop around and find it for closer to $200. That all was before the $4.00 perscriptions some pharmacies offer now.

The $4.00 perscription programs help but nothing says dosages that one may be perscribed are anything like that the program covers for that price. I could say, even with the program the cost of mine would still have been significant.

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Maybe dosage is too high. All over the Internet many suggest ridiculous high dosages i.e. more than 2 pills. Be very wary with high dosages of Spiro. Anything above this is not only useless (effects will taper off with two dosages), it can lead to heart conditions very quickly. To illustrate the risks of high dosages: on deathrow they use potassium as part of a lethal injection. Potassium will shut the heart down, while the other ingredients will only induce a coma. So a high dosage of Spiro will accumulate more potassium in the body, the higher to dosage the more risk the heart can go into cardiac arrest.

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Wow, I did not know this Sascha! Thanks for letting me know!

Since we can't talk exact doses its hard to say what's too high and what's not. I only take one pill and its actually the same dose now that my first Endo prescribed back in 2005-2006. The worst side effect I had back then was a little light headedness when I stood up too quickly but my bloodwork was fine.

I'm still waiting to hear back from my doctor. I'll call his emergency line Monday to go over some things with him and I'll be sure to ask about the amount of Spiro I am taking as well.

HRT is a wonder of modern medicine but its not without its complications to be sure. I'm still glad its an option available to me. It would be hard to put into words how much better I feel every day since starting HRT and how much I look forward to looking into the mirror for more changes.

Thanks again all. Will keep you updated on my luck finding a more affordable pharmacy.

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Scary Halloween story eh? ^_^ but sadly it's true. I know at least two cases where moderate to high spironolactone dosages caused a cardiac arrest in two MtF's, their dosage was above what is considered the recommended dosage a day (I guess you can figure it out). Of those cases both did not have any reported side-effects at all, so it can be a silent killer. Hence the reason why the blood electrolytes (sodium, potassium, chloride and bicorbonate) must be checked rigorously and frequently. One could also be allergic to spironolactone, hence the reason to test it first instead of immediately going for the full blown recommended dosages.

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One must always watch potassium intake when taking spire.

The perscribed dosages vary greatly. There are pills with have much higher dosages than other pills.

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Guest Robin Winter

It's strange to hear these experiences with pricing. For me, the spiro is the less expensive of the two pills by more than half. Maybe I'm getting ripped off on the estrace lol.

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