Hello,
ive a massive problem. Iam nearly 8 month postOP, 3 years HRT. We had bloodwork shortly after SRS and after 6 month. T, DHEAS and DHT have normal, femal ranges. SHBG a bit low, but normal. E2 normal.
But my body is going back to male characteristics. I good bad unclear skin like a man, specially in the face, my acne came back in big steps, ive hairloss. My face change in someway i couldnt interpret. Its not like preOP. Abd my belly change somehow too. Its more man-like. My weight gained by 6 pounds and i nearly ear nothing all the day. Bread and bodyhair growth faster than ever. All in all i feel clear masculinization signs!
Iam so afraid. What happens here?
They cutted my <not allowed> and my body is terrorized by some shadow androgenes or what?
Why such <not allowed> always happen to me? :'(
(Moderator's Note: It is policy to use proper biological words like testes)
Quote from: galaxy on April 12, 2016, 04:30:39 PM
Hello,
ive a massive problem. Iam nearly 8 month postOP, 3 years HRT. We had bloodwork shortly after SRS and after 6 month. T, DHEAS and DHT have normal, femal ranges. SHBG a bit low, but normal. E2 normal.
But my body is going back to male characteristics. I good bad unclear skin like a man, specially in the face, my acne came back in big steps, ive hairloss. My face change in someway i couldnt interpret. Its not like preOP. Abd my belly change somehow too. Its more man-like. My weight gained by 6 pounds and i nearly ear nothing all the day. Bread and bodyhair growth faster than ever. All in all i feel clear masculinization signs!
Iam so afraid. What happens here?
They cutted my ,<not allowed> and my body is terrorized by some shadow androgenes or what?
Why such <not allowed> always happen to me? :'(
You and your Doctor should be able to come up with a solution, but you may want to consult with your local baker about your "bread" issues. 😀
Beard.
Just trying to cheer you up a little, sweetie 😊
It may be a case of too low E. Normal E is anywhere from 20 pg/ml to up to 75,000. Very wide range, too wide to establish normalcy. Higher SHBG also can help as it strongly binds testosterone and dihydrotestosterone. You need to discuss this with your doctor.
Can you post your blood levels? Some doctors have a funny idea of what's normal.
You could also get a second opinion.
So do some transgender people...
Yes, good thing it's a forum.
T 0,1 ng/ml
DHT 120 pg/ml
E2 120 pg/ml (after 6 hours)
SHBG 45 nmol/l
DHEAS 2,5 ug/nl
So what? Her levels are 120 pg/ml. How does this tell us anything useful? Perhaps her levels 12 hours later or 18 hours later are significantly different. How do we find out if this level is optimal for HER? Clearly, it's not producing the expected results.
The body's response is really the only way to finding out if what she is taking is producing good results. She is not responding...so now what? If her doctor refuses to increase dose, then one should question why? What are the risks and potential benefits involved if dose is increased? Studies strongly suggest increasing dose will not pose health risks, especially if taken non-orally while potential benefits may be increased feminization, breast growth, less hair loss, less masculinization. Debatable? Hardly, in my opinion. But, I'm not the doc.
Its tells us its not super low, and not particularly high either.
Its probably half to one third of mine on implants for what its worth. I'm not familiar with how levels change over time since I've never use that method.
I think I agree about trying higher. I asked my endo what would happen if I had a much higher dose than I'm on now and he said its safe enough, but would likely lead to desensitization (and he wont' do it).
Quote from: AnonyMs on April 13, 2016, 08:42:53 PM
I asked my endo what would happen if I had a much higher dose than I'm on now and he said its safe enough, but would likely lead to desensitization (and he wont' do it).
If high levels caused desensitization, why do pregnant women with very high levels not experience desensitization? I suspect the reason desensitization occurs has more to do with fluctuation in levels where too steady levels cause receptors to stop responding like what happens when constant insulin exposure eventually results in insulin resistance. I do however remain open to the possibility that too high levels may cause desensitization and this may be why levels are constantly and gradually increasing in pregnant women to overcome desensitization.
I've no idea, but I'll try to remember to ask him next time.
second opinion seems to be a reasonable course of action.
Okay, lets try to make the question in another way:
Medication before SRS and after SRS is currently the same. Blood levels nearly also the same (see above). Only prolactine is much higher, what reason ever ... not matters here.
Before SRS (with gonades) i had no masculinization, it was okay - no acne, soft skin, no hairloss, maybe no huge feminization, even with injections - but it was okay.
After SRS (no gonades) i got hairloss and my acne comes again. Acne is a effect of androgenes. My skin got very rough. My face looks more and more masulin again ... around the mouth.
I mean how can i get more androgenic effects after removing gonades than before? ??? ??? ???
Are you still taking the same dose of anti-androgen (don't state dose) now that you were taking pre-SRS? The other thing could be STRESS. If you are stressed, adrenals may produce higher amounts of androgen precursors leading to increased levels in tissues, which are not measured by blood test.
I actually experienced the same as you post-op and only higher doses of E worked for me, higher than pre. My doctor agreed. :)
I've no stress. I cant walk/sit and work much because my vagina still hurts after OP. So mostly of my time i'm at home and bored. And i dont think a bit stress could causes acne and other strong adrogenic effects.
Cushing-Syndrome
Then you could discuss with doctor the possibility of raising E.
Cortison is a better option for Cushing i think.
Quote from: KayXo on April 13, 2016, 08:52:00 PM
If high levels caused desensitization, why do pregnant women with very high levels not experience desensitization? I suspect the reason desensitization occurs has more to do with fluctuation in levels where too steady levels cause receptors to stop responding like what happens when constant insulin exposure eventually results in insulin resistance. I do however remain open to the possibility that too high levels may cause desensitization and this may be why levels are constantly and gradually increasing in pregnant women to overcome desensitization.
I'm not sure this is the best place to put this since its a bit wider than this topic, but I asked my endocrinologist (Dr Hayes in Sydney) a few questions today. Bear in mind I'm writing this up from memory and its my words not his.
He does a lot implants, and blood levels tend to be on the high side compared to what many other doctors prescribe. He gives you new implants when blood levels are around 800 pmol/L (about 210 pg/mL). I had an implant a month ago and my current levels might be around 2000 pmol/L (but are untested so I don't know for sure).
Handy estrogen chart
https://en.wikipedia.org/wiki/File:Estradiol_during_menstrual_cycle.png
Regarding safety and desensitization with high and very steady blood levels that implants deliver, in practice there are no problems and these implants/levels are very effective and safe. He has about 3500 trans patients since 1995, and about 70% are on implants. If I recall correctly its only 70% because going back in time they were not so common; more recently it would be rather higher. In all that time only a dozen or so people have stopped using them; only one had a DVT and that was someone who had a history of DVT.
On the other hand ethinyl estradiol is dangerous and he's seen a lot of cases of people having problems with it (he's never prescribed it).
Having SRS and masculinization is not normal. If I recall correctly he's not come across it. He did mention that stress can cause significant reduction in the effect or hormones.
I could tell speaking to him that's he's really into this subject. He's not just doing it because its always been done that way. He's a believer in learning and evidenced based medicine. I liked him before, but I'm feeling very fortunate to have him right now.
Its not normal, thats right. Thats why i ask here. My doctors have no idea. ???
So, after SRS most women got a adrenal overdrive and for short time more androgenes. Its not new. In some cases maybe it take longer and goes over into some cushing-syndrome-similar states (not Morbus Cushing!). Ive a lot of DHEAS which is produced in the adrenal gland only - that means its very active. DHEA/S itself could convert to DHT in the target tissue - mostly the skin. So a typical cushing-symptome is acne or sometime hairloss. On the other hand i maybe have to much cortisol too - this causes the gaining of weight or more fat on the belly and a rounder face. These things i described in the first post. Ive no clue, its only my idea of it.
Dont know if it will stop sometime or becomes a lifelong problem. :'(
Howsoever its a post-OP nightmare!
Quote from: galaxy on April 14, 2016, 10:20:59 PM
Cortison is a better option for Cushing i think.
Do you have Cushing's Syndrome? It needs to be diagnosed.
Quote from: AnonyMs on April 14, 2016, 11:49:13 PM
He did mention that stress can cause significant reduction in the effect or hormones.
Agreed. I noticed this in myself.
QuoteI could tell speaking to him that's he's really into this subject. He's not just doing it because its always been done that way. He's a believer in learning and evidenced based medicine. I liked him before, but I'm feeling very fortunate to have him right now.
Lucky you! Would have loved to meet and discuss with him. One of the doctors who oversees my treatment is the same and we have very interesting conversations. She enjoys learning and reading all the studies I send her. She was originally a researcher. It's great to have her on my side. :) She is planning to write a second book on female hormones, in French.
Quote from: galaxy on April 15, 2016, 07:57:31 AM
So, after SRS most women got a adrenal overdrive and for short time more androgenes. Its not new.
This has not been verified by studies, in transsexual women and in most studies on orchidectomized men, the majority do not experience an adrenal overdrive.
QuoteIve a lot of DHEAS which is produced in the adrenal gland only - that means its very active.
Your DHEA-S (2.5) is within female range of 20-39 yrs olds. 0.45-3.8, based on one source.
And why i got acne, a rounded face and a male-like skin?
Quote from: AnonyMs on April 14, 2016, 11:49:13 PM
Having SRS and masculinization is not normal. If I recall correctly he's not come across it. He did mention that stress can cause significant reduction in the effect or hormones.
It just occurred to me that this bit is inconsistent with question I asked him at a previous appointment (I ask heaps of questions whenever I get the chance). I'm not sure why the difference but it may be the way I asked the question.
Quoting from here, page 74 (have a look, there's a bit more)
https://www.the-ress.net/files/SRS-With-Dr-Suporn-2015.pdf
The Suporn clinic's post-op care book says says that it can happen in about 10-15% of cases "unwanted male characteristics can return immediately post-operative" as the body attempts to make up for the loss of testosterone and that the treatment is anti-androgens "for at least 3 months".I saw that Suporn book online once and asked about it, and my endo confirmed it. Have you tried a low dose of anti-androgens?
I'll try to remember to clarify this next time I see him.
I take a low dosage of Androcur.
But iam 7 month post. I know the manual. I was at Suporn.
Quote from: AnonyMs on April 15, 2016, 02:52:18 PM
The Suporn clinic's post-op care book says says that it can happen in about 10-15% of cases "unwanted male characteristics can return immediately post-operative" as the body attempts to make up for the loss of testosterone and that the treatment is anti-androgens "for at least 3 months".
I don't buy this explanation because low testosterone leading up to high LH/FSH levels (if no or not enough E is taken post-op) will not have any effect on ACTH which stimulates adrenal glands. More likely, the reason for increased androgenization could be:
- increased stress due to changes, resulting in increased adrenal output
- temporary stoppage of anti-androgens and estrogen pre and post-op due to surgery which would lead to an increase in androgenic symptoms persisting after surgery
- if taking an anti-androgen pre-op, and castrate levels of T were attained, anti-androgen also blocked some of the remaining androgens (from adrenal), perhaps even reduced some of it, so that stopping anti-androgen will result in increased androgenic activity post-op because of increased adrenal androgen action.
Taking enough E post-op should suffice (it can reduce adrenal output) without the need for an AA but doctors may underprescribe.
Must have other reasons. My T and DHT is in normal range. Nothing youve mentioned could explain acne symptomes with normal T or the other androgenic effects. In my eyes the so called prohormones like DHEA has to do with that and they were produce by the andrenal glance. It also could explain my high prolactin in any way - its a network. Simple things like "you have to much stress" is not an explaination to me, sorry.
Quote from: KayXo on April 16, 2016, 11:46:46 AM
I don't buy this explanation because low testosterone leading up to high LH/FSH levels (if no or not enough E is taken post-op) will not have any effect on ACTH which stimulates adrenal glands. More likely, the reason for increased androgenization could be:
I've no particular opinion on the reason, but I believe Dr Suporn probably knows what he's talking about and that 10-15% benefit from anti-androgens. Also the person who wrote that PDF said their doctor agreed and it worked for them.
Quote from: galaxy on April 15, 2016, 06:00:09 PM
I take a low dosage of Androcur.
But iam 7 month post. I know the manual. I was at Suporn.
Did you ask the clinic for advice? If you're going back for any revisions its something you could ask Dr Suporn and perhaps arrange to visit a specialist there?
I think if it were me I'd try spiro because I can think of nothing else and you might get lucky, and go in search of some other doctors.
Quote from: AnonyMs on April 16, 2016, 10:21:09 PM
I believe Dr Suporn probably knows what he's talking about and that 10-15% benefit from anti-androgens. Also the person who wrote that PDF said their doctor agreed and it worked for them.
I question Dr. Suporn explanation for the phenomena, not the phenomena itself. Doesn't mean he is a doctor that he is infallible and always right. We should not assume anything as I've come across many doctors who believe and say the wrong things. It is important to question anyone and everyone at all times, in my opinion.
Quote from: galaxy on April 16, 2016, 12:45:34 PM
Must have other reasons. My T and DHT is in normal range. Nothing youve mentioned could explain acne symptomes with normal T or the other androgenic effects. In my eyes the so called prohormones like DHEA has to do with that and they were produce by the andrenal glance. It also could explain my high prolactin in any way - its a network. Simple things like "you have to much stress" is not an explaination to me, sorry.
Have you tried taking more E post-op, with doctor's consent?
Also, further testing should perhaps be done in order to rule out possibilities for why this is happening (Cushing's, etc.). Discuss this with your doctor.
I really like to visit YOUR doctors. In germany doctors have no time for such things ... 10 minutes. Thats enough for saying "hello", have a short talk and getting the prescription. It makes no sense to change doctors - they all have no time. Not today, not tomorrow. In my case its a difficult situation and no doctor take hours to go in detail and searching the error in the system. Thats my experience and what i hear from other people. Time is money.
Quote from: galaxy on April 18, 2016, 12:56:10 PM
I really like to visit YOUR doctors. In germany doctors have no time for such things ... 10 minutes. Thats enough for saying "hello", have a short talk and getting the prescription. It makes no sense to change doctors - they all have no time. Not today, not tomorrow. In my case its a difficult situation and no doctor take hours to go in detail and searching the error in the system. Thats my experience and what i hear from other people. Time is money.
There is also a saying in your country you will only be bothered as much as you let others.
So ... you can insist in a good treatment.
You might ask for being relegated to a specialist.
Its possible they have more time and are really interested in their work. Such people are in every country.
Try to keep your chin up. Usually a solution comes up if we keep looking for it.
*hugs*
Quote from: galaxy on April 18, 2016, 12:56:10 PM
I really like to visit YOUR doctors. In germany doctors have no time for such things ... 10 minutes. Thats enough for saying "hello", have a short talk and getting the prescription. It makes no sense to change doctors - they all have no time. Not today, not tomorrow. In my case its a difficult situation and no doctor take hours to go in detail and searching the error in the system. Thats my experience and what i hear from other people. Time is money.
My family doctor (free) in Canada can take up to 30-45 minutes with me, depending on situation. His patients wait longer but don't mind because in the end, it's well worth the wait. My endo (free) can spend up to 20-30 minutes with me, my other doctor (private) up to an hour.
It's unfortunate that your doctors have no time. Perhaps go private or find someone who is willing to take the time, there MUST be someone, how do you know if you don't look? Nothing comes easy in life. ;)
Quote from: galaxy on April 16, 2016, 12:45:34 PM
Must have other reasons. My T and DHT is in normal range. Nothing youve mentioned could explain acne symptomes with normal T or the other androgenic effects. In my eyes the so called prohormones like DHEA has to do with that and they were produce by the andrenal glance. It also could explain my high prolactin in any way - its a network. Simple things like "you have to much stress" is not an explaination to me, sorry.
Hi galaxy,
I understand where you're coming from, I am having very similar issues after 7 weeks post op, I am having some bloods done tomorrow to try and find out what's going on and I am in the process of seeing 2 different endocrinologists. I understand how frustrating it Ishtar you try to explain to people what's going on and they try to throw answers at you that you can just tell aren't right. This is definitely not a stress issue and I think it's insensitive to suggest you're just stressed. Stress alone doesn't do this to you ( although it could aggravate things) and you are right to say so. I also have high prolactin and there is definitely excess androgens that are being produced by the adrenal glands.
There's something called the HPA axis. It involves your hypothalamus pituitary and adrenals. Having 2 hormones such as prolactin and adrenal androgens in high levels are suggestive of a problem with this. However I suspect this is more a genetic response of some kind, as I have an identical twin, she didn't have GRS like us but she had an orchiectomy sometime around a year ago, same issues!!!! She swears it having something to do with her thyroid as well... Which IS possible, as the thyroid responds to hormones sent from these glands.
The most telling symptom in my case is underarm sweat with odor, which isn't only not normal but I didn't have even before transitioning many years ago, it smells very particular. As well as noticing other things.
After much research and working with different endos my sister has been put on dexamethasone and prescribed thyroid hormone supplements. She's happy, however! I see that as a temporary solution as dexamethasone is a corticosteroid that works by suppressing the adrenal gland androgen production (it also can cause exogenous cushings) She swears the thyroid supplement is even more important and says the thyroid is the culprit... Is it? I can't say.
Like you I started suspecting a cortisol condition such as cushings. Cushings is hard to diagnose and you will have to convince your endo to do thorough testing not just a regular blood test. But it's worth trying. I had my cortisol checked once but it was inaccurately done (mid day test when it should have been early am) and also I was on cyproterone at the time. I almost blamed cyproterone for my symptoms but the truth is it suppressed my testosterone greatly and worked wonders on me and my twin has this issue and did not take cyproterone!!
I have some potential solutions and further tests to request from my endos.
In my case I am also having other effects. Extreme fatigue, migraines, and nausea among others, so I suspect that it isn't only androgens that are being over produced by the adrenal glands. All I can do is keep you updated on whatever is I can find. And let you know you're not alone in this issue.
I am certain there must be a small percentage of trans women with this problem but there's just not enough data to appropriately test snd treat. You have to, as soon as possible, mention what is going on with you to your endo and request thorough testing to be done to adrenal function, thyroid, and pituitary. It is their responsibility to listen to you and help you! No data or history of this doesn't mean it doesn't exist.
Hugs !
Quote from: calicarly on April 27, 2016, 03:12:10 PMThis is definitely not a stress issue and I think it's insensitive to suggest you're just stressed. Stress alone doesn't do this to you ( although it could aggravate things)
How are you so sure it's not stress related? Stress can increase prolactin and adrenal output. The changes that follow such a major intervention can be quite stressful, more than one may admit or be conscious about.
QuoteI also have high prolactin and there is definitely excess androgens that are being produced by the adrenal glands.
What are your prolactin and testosterone levels? What are you taking right now(omit doses)? Did you take cyproterone acetate and/or non bio-identical hormones? Perhaps you have a prolactinoma...Did you do an MRI scan? Cyproterone has been associated with prolactinomas in transsexual women.
QuoteThe most telling symptom in my case is underarm sweat with odor, which isn't only not normal but I didn't have even before transitioning many years ago, it smells very particular.
Stress may cause this AND/OR the withdrawal of an anti-androgen post-op with a lesser dose of E because the very weak action of androgens previous to the op upregulated androgen receptors and increased your sensitivity to androgen such that now you respond strongly to even low levels or just that now, compared to pre-op, androgen action is stronger.
Quotedexamethasone is a corticosteroid that works by suppressing the adrenal gland androgen production (it also can cause exogenous cushings)
Cushing's syndrome is when the adrenal gland is hyperactive. Dexamethasone does the opposite and is more akin to Addison's disease.
QuoteShe swears the thyroid supplement is even more important and says the thyroid is the culprit... Is it? I can't say.
What were her TSH levels?
Like you I started suspecting a cortisol condition such as cushings.
QuoteCushings is hard to diagnose and you will have to convince your endo to do thorough testing not just a regular blood test. But it's worth trying. I had my cortisol checked once but it was inaccurately done (mid day test when it should have been early am) and also I was on cyproterone at the time. I almost blamed cyproterone for my symptoms but the truth is it suppressed my testosterone greatly and worked wonders on me and my twin has this issue and did not take cyproterone!!
I personally suspect to this day that perhaps cyproterone acetate may have long-term, permanent effects in some on their adrenal gland functioning, even after withdrawal. Some studies have shown it to suppress adrenal function.
QuoteExtreme fatigue, migraines, and nausea among others, so I suspect that it isn't only androgens that are being over produced by the adrenal glands.
Androgens give energy. Perhaps your symptoms are due to lack of E. Or a prolactinoma as migraine is one of the symptoms and I remember reading a woman who had a prolactinoma who was feeling extreme fatigue and had migraines. She also reported galactorrhea (lactation) and breast pain.
I think it's important to remain objective and be open to all possibilities. Not to jump to conclusions too quickly. See what doctors have to say and perhaps get a second and third opinion.
Quote from: calicarly on April 27, 2016, 03:12:10 PM
Hi galaxy,
I understand where you're coming from, I am having very similar issues after 7 weeks post op, I am having some bloods done tomorrow to try and find out what's going on and I am in the process of seeing 2 different endocrinologists. I understand how frustrating it Ishtar you try to explain to people what's going on and they try to throw answers at you that you can just tell aren't right. This is definitely not a stress issue and I think it's insensitive to suggest you're just stressed. Stress alone doesn't do this to you ( although it could aggravate things) and you are right to say so. I also have high prolactin and there is definitely excess androgens that are being produced by the adrenal glands.
There's something called the HPA axis. It involves your hypothalamus pituitary and adrenals. Having 2 hormones such as prolactin and adrenal androgens in high levels are suggestive of a problem with this. However I suspect this is more a genetic response of some kind, as I have an identical twin, she didn't have GRS like us but she had an orchiectomy sometime around a year ago, same issues!!!! She swears it having something to do with her thyroid as well... Which IS possible, as the thyroid responds to hormones sent from these glands.
The most telling symptom in my case is underarm sweat with odor, which isn't only not normal but I didn't have even before transitioning many years ago, it smells very particular. As well as noticing other things.
After much research and working with different endos my sister has been put on dexamethasone and prescribed thyroid hormone supplements. She's happy, however! I see that as a temporary solution as dexamethasone is a corticosteroid that works by suppressing the adrenal gland androgen production (it also can cause exogenous cushings) She swears the thyroid supplement is even more important and says the thyroid is the culprit... Is it? I can't say.
Like you I started suspecting a cortisol condition such as cushings. Cushings is hard to diagnose and you will have to convince your endo to do thorough testing not just a regular blood test. But it's worth trying. I had my cortisol checked once but it was inaccurately done (mid day test when it should have been early am) and also I was on cyproterone at the time. I almost blamed cyproterone for my symptoms but the truth is it suppressed my testosterone greatly and worked wonders on me and my twin has this issue and did not take cyproterone!!
I have some potential solutions and further tests to request from my endos.
In my case I am also having other effects. Extreme fatigue, migraines, and nausea among others, so I suspect that it isn't only androgens that are being over produced by the adrenal glands. All I can do is keep you updated on whatever is I can find. And let you know you're not alone in this issue.
I am certain there must be a small percentage of trans women with this problem but there's just not enough data to appropriately test snd treat. You have to, as soon as possible, mention what is going on with you to your endo and request thorough testing to be done to adrenal function, thyroid, and pituitary. It is their responsibility to listen to you and help you! No data or history of this doesn't mean it doesn't exist.
Hugs !
Thanks. I think this will brings me a further step in the right directions. I also think its an genetic failure somewhere in the whole hormone network. Next blood work will be in 2 weeks.
Quote from: KayXo on April 28, 2016, 12:22:27 PM
How are you so sure it's not stress related? Stress can increase prolactin and adrenal output. The changes that follow such a major intervention can be quite stressful, more than one may admit or be conscious about.
What are your prolactin and testosterone levels? What are you taking right now(omit doses)? Did you take cyproterone acetate and/or non bio-identical hormones? Perhaps you have a prolactinoma...Did you do an MRI scan? Cyproterone has been associated with prolactinomas in transsexual women.
Stress may cause this AND/OR the withdrawal of an anti-androgen post-op with a lesser dose of E because the very weak action of androgens previous to the op upregulated androgen receptors and increased your sensitivity to androgen such that now you respond strongly to even low levels or just that now, compared to pre-op, androgen action is stronger.
Cushing's syndrome is when the adrenal gland is hyperactive. Dexamethasone does the opposite and is more akin to Addison's disease.
What were her TSH levels?
Like you I started suspecting a cortisol condition such as cushings.
I personally suspect to this day that perhaps cyproterone acetate may have long-term, permanent effects in some on their adrenal gland functioning, even after withdrawal. Some studies have shown it to suppress adrenal function.
Androgens give energy. Perhaps your symptoms are due to lack of E. Or a prolactinoma as migraine is one of the symptoms and I remember reading a woman who had a prolactinoma who was feeling extreme fatigue and had migraines. She also reported galactorrhea (lactation) and breast pain.
I think it's important to remain objective and be open to all possibilities. Not to jump to conclusions too quickly. See what doctors have to say and perhaps get a second and third opinion.
Hi Kay!
As usual your knowledge is appreciated by me and hopefully others! This may sound weird but If we lived near each other I would love to go to dinner or coffee literally just to discuss endocrinology.
Anyway. More info on the matter, I was put on dostinex after several blood tests over the course of 2 years kept coming with hyperprolactinemia. I did have an MRI done in January and only a week ago today did I get the results and there is an adenoma (benign Tumor)
I do have an inclination to believe that the androgen receptors may have sensitised to a degree Kay you might be onto something there.
Androgen levels after GRS are (in international measuring system UK,Canada) T: 1.1nmol/L free androgen index: 0.6
These results are very similar to preop levels if ever so slightly higher.
I did take cypro for a length of time, and i did lactate but salid issues started before i Was Ever on cyproterone, also my identical twin did not tKe cyproterone and she ended up with prolactinemia as well, except for the fact that they did not find a prolactinoma in her MRI, although microprolactinomas can't be seen in MRI's if they are below a certain size (I think below 5mm). I long suspected the cyproterone as it also has mild glucocorticoid properties Kay, the first endo really didn't seem to think so but the endo I'm seeing tomorrow is a trans specialist he might have better input, as you see tho all the evidence points at not being the cyproterone now.
Dexamethasone suppresses adrenals Kay, if she had addysons it would probably kill her... I do not know her thyroid results, my Tsh is fine t3 is within range on the low side and t4 within range near the high end of the range. My sister says all her tests keep coming back fine! Apart from prolactin she's also on dostinex for it now.
I take estradiol bioidentical
I should receive the DHEA-S test results soon.
Other symptoms I have been suffering are also but not limited to:
Hot flushes
Dehydration (always thirsty) (after GRS intensified but present before)
A definite activation of follicles in my body along with some itchinessand I am one of the most hairless people you would ever meet...(after GRS)
I do have thin skin and stretch marks (cushing's?) and a Round face I actually had lips to reduce my big double chin!! (Before GRS)
Clammy/sweaty skin (after grs)
High lipid profile
Foggy thinking (after GRS)
Unable to concentrate (after GRS)
Irritable (I can't hardly stand the sight of my bf he is suffering for it too) (after GRS)
(Some of these symptoms started pre GRS and intensified after, some of them appeared after GRS)
Other possible reasons:
FSH and LH raised from being at 0 after GRS as they are supposed to. ( any relation? LH possible adrenal stimulator?)
Now I have been diagnosed with a pituitary Tumor it is possible that it is producing too much ACTH as well as prolactin (first endo does want to investigate at least some basic tests for cortisol acth and DHEA-S) like I said tho cushings can be very hard to diagnose and I have been advised by the pituitary foundation to request 3-4 days of free urinary tests . As cushings can often be cyclical and people that don't have the obvious "hormonal look" often have this type of cushings.
Another possibility is another benign Tumor in my adrenal glands, although these are rRe, my sister having the same issues could indicate a genetic condition of benign glandular tumors (hopefully not the case)
Again. Stress can contribute. But some of the changes are too intense and my lifestyle hasn't changed significantly in that manner and I did consider the physical stress from surgery, but again it not all started after surgery, some symptoms I had and intensified, others altogether started from there.
I did do a small at home test of sorts. I took a half a tablet of my cyproterone left over from before GRS and, it did reduce some of my symptoms, the ones that would be related to androgens for about a day. That finding along with test results showing female levels of active androgens leads me to believe it's DHEA-S, which is an inactive androgen that activates into T and DHT only once it has reached the skin.
Kay what are your thoughts on the prostate being left behind post GRS and its role in regards to androgens?
Will be back when I find out more!
Your symptoms seem to me akin to not enough sex hormones. I think your prolactinoma may be larger in size due to the fact that you used cyproterone acetate. I just don't like cyproterone acetate at all not only because it is associated with prolactinomas but also due to its other potential side-effects. In all women I came across having problems post-op, cyproterone acetate was taken pre-op.
I think removing the prostate is unnecessary and would reduce lubrication, possibly cause incontinence problems and maybe (?) affect orgasm. It contributes in no way to the production of androgens. Your levels are low enough but perhaps your body is now extra sensitive post-op and the lack of E is not helping as it is anti-androgenic.
Just my opinions, not a doctor. Keep us posted. :)
Quote
thoughts on the prostate being left behind post GRS
The prostate would be difficult to remove since its usually embedded and it may have side effects, for example on the bladder.
Surgeons usually leave it in place.
It consists of tissue similar to a gspot and makes for a nice G/pspot.
Its hooked up via a second neuronal path independent of the clit and can make for very pleasurable stimulation.
hugs
Quote from: KayXo on May 09, 2016, 02:41:01 PM
Your symptoms seem to me akin to not enough sex hormones. I think your prolactinoma may be larger in size due to the fact that you used cyproterone acetate. I just don't like cyproterone acetate at all not only because it is associated with prolactinomas but also due to its other potential side-effects. In all women I came across having problems post-op, cyproterone acetate was taken pre-op.
I think removing the prostate is unnecessary and would reduce lubrication, possibly cause incontinence problems and maybe (?) affect orgasm. It contributes in no way to the production of androgens. Your levels are low enough but perhaps your body is now extra sensitive post-op and the lack of E is not helping as it is anti-androgenic.
Just my opinions, not a doctor. Keep us posted. :)
Quote from: Laura_7 on May 14, 2016, 10:11:08 AM
The prostate would be difficult to remove since its usually embedded and it may have side effects, for example on the bladder.
Surgeons usually leave it in place.
It consists of tissue similar to a gspot and makes for a nice G/pspot.
Its hooked up via a second neuronal path independent of the clit and can make for very pleasurable stimulation.
hugs
I understand the benefits of it, me asking about its effects on androgens is the fact that it can convert even low levels of T into significant DHT... Hence treatment for prostate cancer consisting of a blockade of all androgens including adrenal androgens, as the prostate can and will use very little levels of T ...
I have received DHEAS and androstenedione test results and from the first endo visit. They are normal albeit on the high side of normal. All is left is checking DHT and any other less important adrenal androgens. The trans endo has not prescribed me interim blockers while things are sorted out, he said he doesn't want to treat something that isn't there, in the mean time my arm hair is growing out of control, I have more body hair than pre transition when I was a very hairless person my whole life. My underarms smell like a trucker no matter how much deodorant I use when I didn't even sweat at all nor did I even smell like this pre transition. I am gonna end up having to self med if my endo will keep brushing off my symptoms as my imagination. He says I look extremely feminine compa rd to most of his mtf patients for something to be wrong. The issue is it seems he will not do anything until I walk back into his office with a beard and beer belly. If anyone has any idea as to what I can do or say I am thinking about contactingthe gender clinic to talk about my dilemma and send them pictures of my increased arm hair etc so they speak to my endo.
I am only waiting a few more days before I do this as he said he would make a requ st for my general physician to do a test for all androgens, I am hoping this will include DHT. I suspect DHT now because I cant imagine having these dramatic changes without significant amounts of DHT. He is going to do thorough cortisol testing, it is one hormone that can have androgenic effects in women even wh eandrogens are under control. Apart from all this I read that when Drs see low Testosterone/ normal female levels of it they don't test DHT usually as its levels are directly related and parallel to T(USUALLY).
How are you getting on with this situation Galaxy? Have you seen an endo yet? I hope you're doing well!! This situation is causing me dysphoria and increased anxiety along with the physical effects. Badly affected quality of life right now ladies.... Somethings gotta give! I am doing all I can and having faith it will get resolved.
I've had more t sets
Quote from: galaxy on April 13, 2016, 03:12:31 PM
T 0,1 ng/ml
DHT 120 pg/ml
E2 120 pg/ml (after 6 hours)
SHBG 45 nmol/l
DHEAS 2,5 ug/nl
There will be something going on that isn't showing up here. Yes your E2 is a bit low by some standards (mine is double that). Some other thoughts:
1. Check progesterone levels. Progesterone helps prevent estrogen insensitivity
2. Can you get estrone tested (E1)? E2 isn't effective if there is too much E1 to bind to estrogen receptors (E1 is far weaker than E2) - especially if you are taking estrogen orally
3. Check prolactin levels, to check for prolactinoma
Surely there is a solution, however I your doctors may not find it with as limited a blood picture as they've taken.
Good luck x
Sam
Quote from: SamKelley on May 15, 2016, 05:44:34 AM
1. Check progesterone levels. Progesterone helps prevent estrogen insensitivity.
If she isn't taking progesterone, there is no point as it will be VERY low. Progesterone actually downregulates (reduces) estrogen receptors and increases conversion of estradiol to estrone, making tissue less sensitive to estrogen.
Quote2. Can you get estrone tested (E1)? E2 isn't effective if there is too much E1 to bind to estrogen receptors (E1 is far weaker than E2) - especially if you are taking estrogen orally
I tend to agree with this but purely speculative at this point.
I think the problem may be not enough E but the doctors should determine this. Keep us posted. :)
Quote from: KayXo on May 15, 2016, 04:36:46 PM
If she isn't taking progesterone, there is no point as it will be VERY low. Progesterone actually downregulates (reduces) estrogen receptors and increases conversion of estradiol to estrone, making tissue less sensitive to estrogen.
I disagree Kay because the relationship between progesterone receptors and estrogen receptors is complex. Also galaxy is on cyproterone acetate which is a progestin, and progestins suppress progesterone which can lead to estrogen dominance because E has no natural antagonist P.
Whether we agree or not on this KayXo it doesn't really help galaxy! My point is that what has been provided is a pretty basic blood picture...
Galaxy for your peace of mind, I'd like to see your doctor perform a more thorough blood picture - We don't know you E1/E2 ratio, LH, FSH, prolactin, free T vs. total T, or progesterone - all components which influence demasculinisation and feminisation (and all of which are fairly common tests).
I guess the biggest red flag for me is if I don't truly believe my doctor isn't taking my experience seriously ... If that's the case then I'd be having a discussion with them about why they're not.
Hope it gets resolved soon x
Sam
Quote from: SamKelley on May 16, 2016, 10:04:43 AM
I disagree Kay because the relationship between progesterone receptors and estrogen receptors is complex.
Volume 18a of Elsevier's New Comprehensive
Biochemistry, Titled 'Hormones and Their Actions, Part I', editors BA
Cooke, RJB King and HJ van der Molen. Published 1988. ISBN
0-444-80996-1. Dewey 612.405.
Chapter 14: Progesterone action and receptors, by
Nancy L Krett, Dean P Edwards and Kathryn B Horwitz, of the University
of Colorado Health Sciences Centre, Denver.
"Binding of progesterone to its receptors then leads not only to progestational effects, but also antiestrogenic effects by causing a reduction in estrogen secretion into the systemic circulation; by stimulating the enzyme 17B-hydroxysteroid dehydrogenase which converts estradiol to the less active estrogen estrone; and by lowering the levels of estrogen receptors in cells thereby decreasing the ability of target tissue to respond to estradiol [4]."
QuoteAlso galaxy is on cyproterone acetate which is a progestin, and progestins suppress progesterone which can lead to estrogen dominance because E has no natural antagonist P.
Progesterone levels are very low in genetic males so the additional reduction would be insignificant.
https://en.wikipedia.org/wiki/Progesterone
"Progesterone levels tend to be < 2 ng/ml prior to ovulation, and > 5 ng/ml after ovulation."
"After the luteal-placental shift progesterone levels start to rise further and may reach 100-200 ng/ml at term."
"Adult males have levels similar to those in women during the follicular phase of the menstrual cycle." Hence, less than 2 ng/ml, compared to up to 20-30 ng/ml in women during the luteal phase and much more during pregnancy.
No such thing as estrogen dominance, strictly unsubstantiated claims not backed up by science. Many of the assertions often expressed alongside this notion are also false and have been disproved by science. Many transsexual women do fine on estrogen alone and sometimes, on quite high levels. Progesterone can even make things worse for them, sometimes. I personally like it.
The only instance where progesterone is absolutely required is in women with uterus as estrogen alone can apparently increase risk of uterine cancer. But, it may have other benefits as well, for SOME women, including myself.
QuoteGalaxy for your peace of mind, I'd like to see your doctor perform a more thorough blood picture - We don't know you E1/E2 ratio
We can easily estimate this based on the route of administration, testing is not necessary. Some argue this ratio is not important as E1 and E2 interchangeably convert to each other. I really am not sure what to think of it. Am on the fence about it.
Quote, LH, FSH, prolactin, free T vs. total T, or progesterone - all components which influence demasculinisation and feminisation (and all of which are fairly common tests).
She had her prolactin levels checked many times and MRI as well to determine if prolactinoma was present. Negative, so far.
Her T will be low since she is post-op, no need for this. Progesterone is low too as she is taking no progesterone. All LH and FSH will reveal is if she's taking enough to keep away hot flashes and typical climacteric symptoms. Not if she's taking enough E for optimal feminization for her. She didn't notice any difference with progesterone and besides, she is already taking a progestogen, cyproterone acetate.
Prolactin 170pg/ml
FH 0
FSH <1
Actually iam taking progesterone again. Until now no changes.
Your prolactin levels are VERY high. Did you have MRI again recently just to be sure?
You dont tell me anything new. Waiting for the new values.
But my actually problem is massive hairloss snd acne"