how my testosterone trial failed after a hopeful start

[pattismith]

some months ago, I started testosterone cutaneous gel.

very quickly I felt relief from my pains and from my join laxity. No more physio needed, it was an instant effect.

My muscles were better, and my weakness disappeared too.

I could even tolerate antibiotics that were making me extremely weak for some years (azythromycin and other macrolids), it was a kind of miracle.
My testosterone blood level rose to 3 times the maximum level for a woman. This allowed my estrogen level to improve as well (I am a perimenopausal woman, and so my sex hormons are all dropping progressively).

Then a bad headache came back and put all my hopes down to the floor...

I already know this kind of headache for at less ten years, like if my head is a baloon ready to explose.

And I have already got rid of this headache before, when I rose my thyroid hormons level, so I thought it would never come back… But it did

My researches convinced me that this headache/baloon is related to idiopathic intracranial hypertension.

This condition has been described in hypothyroidism, but also associated with testosterone deficiency in men.

Interestingly , it was also described in a case of a woman taking testosterone for transgender transformation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5706971/

 

[Hope4]

@pattismith I'm sorry that didn't work out. I know headaches can be quite a puzzle.

I took black cohosh for years, for hot flashes. A naturopath told me that black cohosh can raise testosterone too high in women, and told me some symptoms. I dropped the black cohosh, and in a few weeks I noticed that those symptoms had disappeared or lessened. And I noticed I didn't feel quite as strong or peppy. So, maybe he was right. I don't know how it would be to take black cohosh, or other supplements which could increase testosterone.

Perhaps there is a way to have just enough, and not too much.

I am sending you good thoughts and wish you healing rest.

 

[pattismith]

@Hope4 , thank you for your reply.

This is exactely the question, is there a level that will give benefits but no side effect, i don't know yet.

One other great thing I got from testosterone therapy was the end of menses;
it was very nice, as I suffer dysmenorrhea. As soon as I stopped testo, my menses came back...

 

[sb4]

@pattismith I second the idea that it could be from raising T too high. Perhaps if you tried again without letting T go out of range you would have better results?

 

[YippeeKi YOW !!]

@pattismith, @sb4
I'm so sorry that another hopeful experiment was hot down in flames. But I tend to agree with sb4.

Balancing exogenous hormones is an exercise in constantly adjusting the sails, as it were, and being exhaustingly vigilant re: potential symptoms.

So be of good cheer. It's highly likely that you can try again after you clear your system thoroughly, and the go for a lower starting dose, or spacing the doses more widely. Maybe both.

I send you affection and hugs, and a heartfelt "there-there".

 

[pattismith]

@sb4 @YippeeKi YOW !!
thank you for your replies. Hugs to you too!

Yes I know it looks like I took a heavy dose of testo, but in fact I just took the dose used in the pilot study with testo for fibro women.
Not sure if I will took advantage of a lower dose, but I agree it is worth a try!

Another interesting thing I got with testo was to change all my reactions to other drugs .

Also I noticed caffeine was worsening this head pressure I had from testo, which is consistant with my intracranial hypertension hypothesis (caffeine is bad for Idiopathic intracranial hypertension)

 

[sb4]

@pattismith I have a similar experience to you where I took a very small dose of T which was around 1mg bio available and my T went up to 1500 and my feet started to swell. So perhaps I need an even smaller dose than that. I was considering EOD or something similar however I noticed when starting T I would have bad sleep the first night so not sure if that will keep happening with EOD.

 

[pattismith]

Here my update, 2 weeks after I stopped the testosterone gel:

-J5. Still have intracranial hypertension sign (transient pulsatil tinnitus)
-J6 clear improvement; Head ok, can tolerate caffeine. Still no pain.
-J7 stiffness and hyperlaxity back again
-J8 Neck and shoulders pain back again, walking is more and more difficult.
-J13 Legs pain back again
-J14 My Testosterone blood level is back to my level prior the trial.
I am feeling so bad, I clearly need to take tetosterone gel again for a new trial (with a lower dosage)

@pattismith I have a similar experience to you where I took a very small dose of T which was around 1mg bio available and my T went up to 1500 and my feet started to swell. So perhaps I need an even smaller dose than that. I was considering EOD or something similar however I noticed when starting T I would have bad sleep the first night so not sure if that will keep happening with EOD.

1 mg bioavailable doesn't seems much for a man, I was taking a maximum of 0.65 mg of bioavailable testosterone for my trial.
Which unit do you mean when you write your testo level went up to 1500?

 

[sb4]

1 mg bioavailable doesn't seems much for a man, I was taking a maximum of 0.65 mg of bioavailable testosterone for my trial.
Which unit do you mean when you write your testo level went up to 1500?

The american unit, I think ng/dl. Range is like 250-1000. I had tested around 6 months before taking T at below range. My health did get slightly better in the 6 months in between.

The thing is, I read somewhere that supplementing with small physiological amounts was better as it doesn't suppress endogenous production. I thought it would be safe to start small and then move up. My docs told me to take the equivilent of 4mg and they were very shocked when my levels came back that high even though I didn't tell them I was only taking 1mg!

I cannot rule out my T levels going up significantly in the 6 months between testing low and starting the T however I highly doubt that it could have gone up that high. The dysautonomia could be playing a role but I noticed an increased libido on T when it is usually quite low. I don't notice this normally so I don't think wild autonomic swings are the reason.

Perhaps you should try something like 0.1mg, if you feel nothing you can always increase it.

 

[Learner1]

Might it be possible that you need other hormones, too, like DHEA snd pregnenolone, and not a lot of testosterone? I take a little of several hormines, which works best for me, though too much estradiol, pregnenolone or progesterone produce all sorts of symptoms. Balance is likely the key...

 

[pattismith]

Might it be possible that you need other hormones, too, like DHEA snd pregnenolone, and not a lot of testosterone? I take a little of several hormines, which works best for me, though too much estradiol, pregnenolone or progesterone produce all sorts of symptoms. Balance is likely the key...

oh yes, I fully agree with you and I know you are completely right.

But on the other hand I needed to know what benefit I could have from testosterone.
I think DHEA could make it too, but it may be longer to observe the effects.
And when results are slow, I have difficulties to objectively notice them, which is a problem.

Secondly, I am in a personal emergency situation so a quick relief is just what suits me best!

 

[Learner1]

I understand. I only know I feel better when my DHEA is a bit above the range. I would be wary of too much testosterone 7mg a day of a compound cream is plenty for me and I dont have ovaries. Best wishes!

 

[pattismith]

I understand. I only know I feel better when my DHEA is a bit above the range. I would be wary of too much testosterone 7mg a day of a compound cream is plenty for me and I dont have ovaries. Best wishes!

do you know how much bioavailable testosterone is in 7 mg of your cream?

I take currently 0.1 g of a 16.2 mg/g gel, so it contains 1.62 mg of testosterone, with only 10% available transdermally, which gives 0.162 mg of bioavailable testosterone.

 

[Learner1]

No, but I will ask.

 

[pattismith]

My researches convinced me that this headache/baloon is related to idiopathic intracranial hypertension. (I got two times pulsed tinnitus, which is typical of IIH)

This condition has been described in hypothyroidism, but also associated with testosterone deficiency in men.

Interestingly , it was also described in a case of a woman taking testosterone for transgender transformation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5706971/

this study just released points an androgen connection as well (in obese women):

A unique androgen excess signature in idiopathic intracranial hypertension is linked to cerebrospinal fluid dynamics
feb 2019

abstract

Idiopathic intracranial hypertension (IIH) is a condition of unknown etiology, characterized by elevated intracranial pressure frequently manifesting with chronic headaches and visual loss. Similar to polycystic ovary syndrome (PCOS), IIH predominantly affects obese women of reproductive age. In this study, we comprehensively examined the systemic and cerebrospinal fluid (CSF) androgen metabolome in women with IIH in comparison with sex-, BMI-, and age-matched control groups with either simple obesity or PCOS (i.e., obesity and androgen excess). Women with IIH showed a pattern of androgen excess distinct to that observed in PCOS and simple obesity, with increased serum testosterone and increased CSF testosterone and androstenedione.
Human choroid plexus expressed the androgen receptor, alongside the androgen-activating enzyme aldoketoreductase type 1C3. We show that in a rat choroid plexus cell line, testosterone significantly enhanced the activity of Na+/K+-ATPase, a surrogate of CSF secretion.
We demonstrate that IIH patients have a unique signature of androgen excess and provide evidence that androgens can modulate CSF secretion via the choroid plexus. These findings implicate androgen excess as a potential causal driver and therapeutic target in IIH.

 

[pattismith]

Here my update, 2 weeks after I stopped the testosterone gel:

-J5. Still have intracranial hypertension sign (transient pulsatil tinnitus)
-J6 clear improvement; Head ok, can tolerate caffeine. Still no pain.
-J7 stiffness and hyperlaxity back again
-J8 Neck and shoulders pain back again, walking is more and more difficult.
-J13 Legs pain back again
-J14 My Testosterone blood level is back to my level prior the trial.
I am feeling so bad, I clearly need to take tetosterone gel again for a new trial (with a lower dosage)


1 mg bioavailable doesn't seems much for a man, I was taking a maximum of 0.65 mg of bioavailable testosterone for my trial.
Which unit do you mean when you write your testo level went up to 1500?

Follow up of my second testosterone trial.

I was so bad, so painful and weak, that i started again testosterone.

I started a quarter of the initial dose (0.65/4 bioavailable testo).
It didn't do much, even if my blood level was up to the maximum limit level for a woman.
I raised progressively to 3 quarters of the initial dose (0.65 x 3/4 bioavailable testo).

at this dose, my muscle weakness is much improved, my spine laxity is much improved too, although my hip laxity is still a problem (this problem was fixed at the initial dose only).
At this supra-physiologic level, I do have much problems with acne and headaches. but PEM has disappear, and all my reactions to drugs are modified.

I can't do without testo, I just need it too much for my muscles and ligaments, so I am considering trying drugs that will improve my headaches. I will give some updates about what i will find usefull to fix this big issue.

 

[Shanti1]

Hi @pattismith are you still using testosterone gel and have the benefits continued. May I ask if you had/have any POTS or OI type symptoms and if T improved those symptoms?

I am am also female, 45 year old, premenopausal. My testosterone, free and total are in range, but low-end. I am just starting with 1-2mg as a T gel and can increase the dose if needed (I am usually very sensitive). With T gel, the assumption is 10% absorption so it would be about 0.1-0.2mg absorbed.

 

[pattismith]

Hi @pattismith are you still using testosterone gel and have the benefits continued. May I ask if you had/have any POTS or OI type symptoms and if T improved those symptoms?

I am am also female, 45 year old, premenopausal. My testosterone, free and total are in range, but low-end. I am just starting with 1-2mg as a T gel and can increase the dose if needed (I am usually very sensitive). With T gel, the assumption is 10% absorption so it would be about 0.1-0.2mg absorbed.

Hello @Shanti1 , I failed to solve my problem with hormons.
I finally had diagnosis since then:
chronic iron deficiency + hypersomnolence associated TDAH/inattentive form.
I am probably not the only woman reaching 55 years before being diagnosed.

 

[Shanti1]

@pattismith Thanks for your reply. I tried T gel several years ago with no improvement, but I did not have OI at that time. I'm hoping it can help me maintain my BP. I'm glad you found some solid diagnoses other than "ME/CFS", sure helps to have something to target.

 

[Shanti1]

Testosterone gel 1-2mg was not helpful for my orthostatic hypotension, if anything I felt worse after application.