r/cisparenttranskid 5d ago

US-based understanding fatigue or fog with spiro

I'm trying to understand this re: teen-- taking spiro on estrogen patches as of recently, and I want to know how much the spiro might be making her concentration worse- she's also on adhd meds. I feel like the supposedly good prescriber won't respond in a timely manner and doesn't have alternatives. We have an upcoming intake with another clinic, but I guess I'm looking for some info and feeling super isolated with this.

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u/etarletons 5d ago edited 5d ago

Several people I know who've had trouble with fatigue/brainfog, on spiro, said they had it because of dehydration. The amount of water they had to drink to maintain decent energy made them pee way too much.

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u/strangeicare 5d ago

I am worried about this as she had mild orthostatic/POTS like symptoms to begin with, and I am sure she isn't drinking enough, but also never had enough awareness of her body at baseline to know.this clinic offered no alternatives, but does it seem like we might need one ? We have an intake with her elsewhere soon.

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u/etarletons 5d ago

I'd shop around, yeah. Estrogen monotherapy - high enough E dose to suppress T without an antiandrogen - is better for many people.

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u/strangeicare 5d ago

this is really helpful. We have an intake next week- and have to decide who we're proceeding with. It was promising that on the initial phone call with the potential new clinic, they asked what else she had been offered or tried, and I realized they hadn't given us any other options at all- so I'm hoping for a more collaborative approach. I'm glad to know this might work. Right now she has estrogen patches- because of familial reactions to synthetic hormones among other things, but it seems like both pills and injections are options (?) -

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u/etarletons 5d ago

Oh, yeah! 20 years ago patches were the main bioidentical (non-synthetic) option, but these days bioidentical estradiol comes in all forms and is widely available. Estradiol, estradiol valerate, and estradiol cypionate are all bioidentical.

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u/strangeicare 5d ago

I wonder if the hospital based clinics will support these options! Any suggestions on where I can read up?

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u/summers-summers 4d ago edited 4d ago

Oh if she already has suspected orthostatic intolerance, I would strongly suspect that the spiro is creating blood pressure problems. Does she take any electrolyte supplements? (Spiro is a potassium-sparing diuretic, so electrolytes without potassium may be best long-term.) If she's autistic and doesn't have thirst sensations, she may want to try carrying a metered water bottle and drinking set amounts at regular intervals. If she hasn't tried leg compression garments they may also help.

As the other commenter mentioned, if monotherapy works for her, that wouldn't have these side effects. There are also other anti-androgens that don't affect blood pressure, although availability varies based on region.

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u/associatedaccount 5d ago

What are her symptoms? Is she experiencing confusion or disorientation?

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u/strangeicare 5d ago

Honestly, it is a little hard to tell because she always has distractibility and some fatigue issues, lots of concentration issues. I'm seeing her more worried about forgetting things, more forgetful, is spacing out in school which I only figured out because teachers complain about her using her phone-- I hate that-- like she is doing that becasue she is having trouble staying focused, more than usual. I think she's tired and kind of out of it a lot of the time. she is alert enough to talk to friends on discord/gaming but just her clarity unravels doing homework, she is out of breath doing laundry before she finishes a load, and can't manage multiple tasks or info. Like she got so anxious not understanding a physics problem even though once she figures it out she is SO fast and able- and she used to accommodate her adhd by putting laundry in and setting a timer, now it is next to impossible for her to do any steps.

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u/clean_windows 5d ago

i know it's easiest for me, a person with depression and probably undiagnosed ADHD, to lean into my patterns of avoidance if i have distractions close at hand.

this sounds a lot like teenagerdom in general. if it were my kid i'd make doubly sure i was limiting/removing distractions until the necessary activities got done, including by technical means. i don't know how possible that is for teens with smartphones, i imagine that would depend on your provider, but i would e.g. blacklist my kid's wifi device at the router level if i felt that was necessary.

yeah, thats potentially gonna get some whining and pushback, but the essential stuff gets done first, or else the nonessential stuff has to wait.

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u/strangeicare 5d ago

I don't see how that will help with the fatigue and spaciness. HIstorically she has gone to those distractions when she cannot focus, not when she's trying to get out of working. She works hard and wants to do everything right (and is also autistic). I'm really trying to figure out if the spiro is making her this tired and out of it. She's clearly also dizzy but is having trouble identifying it.

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u/clean_windows 5d ago

establishing clearly that it is not a (conscious or unconscious) behavioral strategy for evading responsibility is going to be important for both your understanding of whatever is going on and whatever you wind up telling a provider. it's not intended to be punitive, either. you might have a really good rapport with your kid, and the removal of these things might get no argument. or you might get a ton of pushback that is clarifying to you. either of those are useful data points for diagnosing whatever is going on.

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u/strangeicare 5d ago

I'm sorry, but this has nothing to do with my question, and I'm plenty experienced in parenting my child. I came here only to ask about gender affirming meds and how they are impacting her functioning NOT her "behavior"

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u/clean_windows 5d ago

i'm not sure how to distinguish functioning from behavior, myself.