Brain Fog issues post-op

[Lisa B]

Hello All! 

I'm in trouble.  For a few years now I have been suffering from what I can only describe as "Brain Fog."  My family and friends tell me I am not getting better, it's getting worse.  There is a lack of memory retention, attention and concentration.  Also, I feel this lightheadedness like when you just are just waking up in the morning or like there are big fluffy clouds in my head that don't allow me to think right.  This has affected my job, my family, and my friends.

A little about my medical history: Started Finasteride (Propeca) in early 2000's and continued until 2008.  Started spironolactone and Vivelle Dot patches in 2008.  SRS surgery in 2011, and post surgery discontinued spironolactone and went down on the patch dose which is my current HRT.  Since I started taking Propeca years ago, I have noticed a brain fog.  It become considerably worse after starting Spiro in 2008, but I continued onward until surgery in 2011.  After stopping the spironolactone, my "fog" seemed to lift slightly, only to return a few month later.  Besides the estrogen patch, I take vitamins and herbs which seem to help my cognitive functioning, and chose a pescetarian lifestyle (someone who only eats fish for meat) and am careful to get enough protein in my diet.  I'm healthy, try to exercise as much as I can and well within the ideal weight for my height.

My endocrinologist has not been much assistance.  "I've never heard of such a thing.  Vivelle Dot does not cause "brain fog!" and that look like I'm bat ->-bleeped-<- crazy.  She has offered to put me on a small dose of Testosterone a year ago but I declined.   

My closest friend has watched my mental deterioration for years and has suggested I lower my dosage of estrogen or go off completely.  She thinks that's the problem.  "Your body is not changing anymore and you don't need it."  I don't feel it is the right thing to do.  Your body needs a hormone of some type to keep you balanced.  I don't have much hope for this solution.

In the same way, I don't feel right about adding more estrogen to the problem, either.  I could up my dosage and consider if my "fog" is improved after a few weeks.  I don't feel this will help either.

Recently, I read a post from Princess_Jasmine on this site about her "Brain Fog" but she doesn't appear to be active in the boards anymore.  If anything, she made me feel like SOMEONE understood what I am going through! 

If you have had a similar problem, I would love to hear from you!  What did you do to overcome your cognitive issues and get back to living life again?  Any advise would be appreciated 

[Lara1969]

Finasteridr report something like brain fog even after stooping taking it. Google brings up many search results if you look for "Finasteride brain fog".

Therefore I stopped taking it.

I am also on Estradiol patches and I feel great. There a no negative side effects on my brain.

Lara

[Lisa B]

Finasteridr report something like brain fog even after stooping taking it. Google brings up many search results if you look for "Finasteride brain fog".

Thank your for this info, Lara.  I should do some research on Propeca and see if that is what the problem is.  I've been off of Propeca for many many years... and the brain has a wonderful way of healing itself.  I wonder why this is still causing an issue years later?  It doesn't make any sense...

[Jennygirl]

Hi Lisa B! Please do not post your dosages, we can't allow it because people could use the information to self medicate.

Thank you!

[Princess_Jasmine]

Hi Lisa! I'm sorry your experiencing this, but I can be of help! I thought I posted on here that everyone post op needs to check their thyroid. Well sweetie that's probably what's wrong. You need to call and find a good endo who specializes in thyroid treatment. Make sure you have the following blood work done: free t3, free t4, tsh, and antibodies. No other thyroid tests really matter except your FREE thyroid levels. If these numbers are not 50% of the range or higher you have hypothyroidism even with a normal tsh. Make sure you're doctor puts you on natural dessicated thyroid and not synthroid or some T4 only medication. We need t3 and t4 which is in natural dessicated thyroid. The most helpful site is sttm.org or Google stop the thyroid madness. It has all of this info and more. The problem with thyroid disease is that 90% of doctors don't diagnose it correctly or even treat it correctly. The tsh test is basically useless which is why you have to go by your free thyroid levels. The longer you stay hypo, the more anemic you become because your body can't hold into iron. Lastly, your friend was sort of right about stopping estrogen. You see, good estrogen requires additional thyroid hormone because estrogen binds up some thyroid hormone. This is why women typically need higher thyroid dosages than men. If you were to stop estrogen, you'd be less hypothyroid (but still be hypothyroid) with estrogen deficiency ( and all of the fun symptoms of menopause lol). The last thing is that you're adrenal glands become damaged over time due to hypo or hyper thyroidism. So you will need to do what I did since you sound like you have been hypo for years: get thyroid lab work , get a full iron panel of lab work, and try to get a salivary cortisol kit done. The right endo will do all of this so make sure you call around. If you don't find one, my doctor can treat you via phone! Ok this should set you on your path lol good luck sweetie! And no you are not crazy, every thyroid patient gets told that a billion times until they meet the right doctor

[Just Shelly]

Great advice Princess!!

I might look into this as well, since I am having similar symptoms, plus I am always cold!!

[Eva Marie]

Another possibility is that you are suffering from ADD. I had it mildly as a kid and the older I got the worse it got. ADD seems to be very prevalent in trans people for some reason. I now take a medication every morning and when it kicks in the fog lifts and I'm ready to go.

[calico]

ahhh brain fog, it seems several of us after we have surgery develop it, including my self. when I came back I was taken down to half/dose per my endo staying with the classic 1/2 dose after srs and nothing else other than e. well I was very tired and lethargic to the point of friends and family noticing. My performance at my job suffered, and I didn't understand it, finally after several talks with my endo she added prometrium to my regimen and that improved things quite a bit so we slowly raised my E level back to pre-op and well that did the trick. I would try finding a different endo one who listens to you and makes a game plan that includes your opinions. and by all mean pays attention to blood panels. checking the thyroid isn't a bad idea either and you should do this as well just incase its not a lack of progesterone on E like it was for me, keep in mind everyone is different.

[Jill F]

Another possibility is that you are suffering from ADD. I had it mildly as a kid and the older I got the worse it got. ADD seems to be very prevalent in trans people for some reason. I now take a medication every morning and when it kicks in the fog lifts and I'm ready to go.

I know what you mean.  I have two different meds for that, but I hate taking them because... LOOK, A SQUIRREL!

[Just Shelly]

Another possibility is that you are suffering from ADD. I had it mildly as a kid and the older I got the worse it got. ADD seems to be very prevalent in trans people for some reason. I now take a medication every morning and when it kicks in the fog lifts and I'm ready to go.

This is interesting! I think I may be suffering from some ADD.....my one son does....I've thought about trying some of is old meds...I've switched them 3 times since all of them affect his appetite and he withers away!

Sometimes my mind is in a fog yet still going a million miles per hour....when home I need to lay down for 5-10 minutes just to collect my thoughts! It doesn't help that I'm also caffeine dependent

[Eva Marie]

Caffeine is one of the things I rely heavily on to keep me focused during the day.

[Jill F]

Caffeine is one of the things I rely heavily on to keep me focused during the day.

Yes, it seems to help keep the squirrels at bay. (No, not you, Laura...)

[calico]

Caffeine is one of the things I rely heavily on to keep me focused during the day.

same here as well, I'm not much on coffee but I do like my hot tea with my meals and I rely heavily on monster ultra zero's at work. 

[Ginny]

Hi Lisa B! Please do not post your dosages, we can't allow it because people could use the information to self medicate.

Thank you!

8. The discussion of hormone replacement therapy(HRT) and it's medications are permitted, with the following limitations:

    C. The discussion of recommended or actual dosages is strongly discouraged to prevent information obtained on this site from being used to self medicate.

Sorry to highjack the thread, but I haven't seen a open reason until now.
I'm pretty sure it doesn't say dosing posts are prohibited in the guidelines. It states that they are discouraged, but not prohibited.  I always wondered about this and why people seemed leery of posting. Better to not post it then get reprimanded?  I would think that we could learn a great deal by knowing different peoples dosages, over the fear of someone self medicating.  It would also probably open up more discussion with your endo if person A is getting results X, while person B C and D are getting results Y with only a slight modification in medication. Possibly the endo has been doing something so long they don't even consider other options for their patients. I've always had a philosophy that more knowledge is better, and if someone misuses it and it can only harm them and not others then its their own stinking fault
Again, sorry for the mini rant there,
~Jen

[LordKAT]

Using the word discouraged allows us to say minimum dose or lo dose or average dose without actually giving up any exact amount. Self medicating posts are not allowed at all. People vary widely in what they take and what effect it has on them. Two people can be on the exact same regimen and have widely varying results.

[Junebug]

same here as well, I'm not much on coffee but I do like my hot tea with my meals and I rely heavily on monster ultra zero's at work.

OMG.  Monster ultra zeros.  Those are sooo good and addictive lol.

[kira21 ♡♡♡]

I would ask your endo to look at prescribing micronised progesterone.  I am not an endo,  but it is my understanding that progesterone levels drop post op below that of even a natal male.  I have read academic papers that associate progesterone with cognitive functioning. 

But what do I know?

[Suziack]

Lisa B, your account of developing brain-fog sounds like something that is really worth being seriously concerned about. I don't think you'll get much help from the medical community - they are generally only interested in the easy cases - although some may go along with what ever you want to try (as long as it's within reason). Is your sleep being affected, at all?