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EVERYONE TRANSITIONING needs to be aware of our risk for THYROID DISEASE!!!

Started by Princess_Jasmine, March 18, 2013, 11:09:04 AM

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Princess_Jasmine

Dear everyone on Susans.

I would like everyone to be made aware of a very serious health problem that can happen to you when you go through SRS/orchi. This may or may not happen to you, but you should be aware of the symptoms so that you can get it treated in order to ensure a successful transition. I am talking about AUTOIMMUNE THYROID DISEASE, that is usually triggered by dramatic hormonal shifts/disruption of HPTA axis. So, it makes sense why myself and many other transpeople I know also experience this disease due to the disruption of HPTA axis after both SRS and Orchi. I have heard of it happening to one Tgirl I do not know personally after 3 years on hormones and no surgery, but my own experience is that SRS and Orchi have triggered it among both myself and other Tgirls I am close friends with in real life.

I have been posting on these forums for approximately 3 years now, but for the past 2 years I have been posting about how I have defeminized post op, regardless of how "optimal, low, or high" my estrogen levels have been. My breasts have diminished, I grew weird facial hairs I did not have before, developed depression and fatigue, and also developed serious brain fog. I never had any such symptoms or this feeling of "loss of my old self" before my SRS. My HRT blood tests would come back perfect And FINALLY I have figured out the problem!

Finally, after 2 years, I broke down in front of my teacher at school during her office hours and told her all of the problems I had been having (brain fog, hair loss, depression, no energy, never feeling tired, never feeling hungry, weight fluctuations, food intolerances) and I told her I had nothing to be depressed about but yet I was. She looked at me like it was an epiphany moment and told me the exact same thing happened to her after she gave birth to her second child. She told me giving birth the second time around triggered autoimmune hypothyroidism that went undiagnosed for 12 years before a doctor finally did the right tests and treated her for it. I told her all of my doctors tested my TSH and they always called me and said it was fine. I also told her that most doctors laughed at me when I asked if I was hypothyroid because they said only overweight people could have hypothyroidism. Surely, they said, someone who was a skinny girl like me could not possibly have it. One doctor even laughed at me and said "well you're skinny so you if you do have a thyroid problem, you're probably hyperthyroid and not hypo!" My teacher, flabbergasted, told me that the TSH is a pituitary hormone and can take many many years (in her case it took 12) before the TSH matched how low her actual thyroid hormone levels (free t3 and free t4) had been all along. She urged me to go get a bunch of tests done, and so I found an endocrinologist willing to do it. After visiting countless endocrinologists, I found one (who ironically goes to my church) to do all of the correct tests for my thyroid (a full thyroid panel, not just the TSH like most doctors).

Well, wouldn't you know it! At only 21 years old, my SRS for me triggered autoimmune thyroid disease. My thyroid labs came back, and my thyroid hormones (free t3 and free t4) were at the bottom of the range! Also, the explanation of how the thyroid goes through stages of hyper and hypo over a period of months to leaving one completely hypothyroid after a couple of years perfectly explained why every couple of months everything continued to worsen (weight fluctuations, hair loss, etc)! I also have read on another forum of another T-girl who went through exactly what I did, except she never had her surgery. She had simply been on hormones for three years, and something "changed" like it did for me after my surgery.

I am finally being treated for this condition, and I am on the path to feeling like my old self again! It takes a while for your body to readjust, but my depression is gone (yay!!) and already my body is looking back to its feminine self :D The reason I feel this is necessary to be made known to everyone is that I know of at least a couple of other T-girls in person who have the exact story as me as soon as they completed their SRS, and I am shocked at how common it is. The part of this all that irritates me is that most doctors will blame it on depression, especially if you are female and especially if you tell them that you're trans. It's simply assumed that depression is always the cause, but for me I knew it was a side effect of something else (not the cause)! I just know my body and I knew something was not right. I never thought something like this could happen to me at only 21 years old, but I am hoping that my story will urge others to go get their thyroid checked if they are experiencing the same symptoms after their SRS/orchi or having been on HRT for years. Now at age 23, it took me 2 years to finally put this mystery together, and I hope that everyone will be made aware of how autoimmune thyroid disease can really put the brakes on your transition no matter what stage you are in.

P.S. I forgot to mention that the "adrenal overdrive" that some people notice after SRS/orchi is likely due to the beginning stages of hypothyroidism, where the thyroid actually goes hyperthyroid. Hyperthyroidism triggers the adrenal glands to release higher cortisol/hormones in order to block excessive thyroid hormone levels from pooling in the blood. Some people are lucky, and the thyroid will regulate itself after this stage and function normally. However, others will be left with autoimmune hypothyroidism. Just some of my research I thought I would share :)

Kisses and hugs to all of my sisters :) xoxo
  •  

Sarah Louise

Many things can affect your thyroid, not just estrogen.

Diabetics often have thyroid problems, I have been on thyroid meds for years and they work very well.  My spouse had half their thyroid removed and the meds replace what is needed. 

I have not heard of taking gender hormones increasing thyroid risks.

Testing for thyroid issues is very easy, the doctor feels your neck and does a blood test.
Nameless here for evermore!;  Merely this, and nothing more;
Tis the wind and nothing more!;  Quoth the Raven, "Nevermore!!"
  •  

Princess_Jasmine

Hi Sarah! Sorry if it was unclear, but I mean that the main cause is usually after orchi/SRS. Taking hormones in itself is a rare trigger, but I have heard of it happen to one Tgirl. The four Tgirls I know of in person developed symptoms after their SRS/orchi. Also, I would be cautious about saying testing for thyroid disease is easy because countless people go undiagnosed for years due to doctors believing in the simplicity of its finding. This leaves many patients suffering for years, as my teacher in my story suffered for 12 before finally being diagnosed!
  •  

Catherine Sarah

Thank you Jasmine,
For this award winning post. I've followed your story throughout your trials and have always wondered how it all finally worked out for you.

I'm just sooooooo pleased you are getting back to your old self after all this time. So good for you. You'll now be able to bask in the sunshine and glory of your transition.

Thank you once again

Huggs
Catherine




If you're in Australia and are subject to Domestic Violence or Violence against Women, call 1800-RESPECT (1800-737-7328) for assistance.
  •  

Ms. OBrien CVT

Jasmine, I am so happy you finally got your issues figured out.  Like Catherine, I have followed your trials with this.  I am going to keep this in mind and talk to my doctor about a full thyroid panel.


  
It does not take courage or bravery to change your gender.  It takes fear of living one more day in the wrong one.~me
  •  

peky

Show me the evidence! and please no Dr. Oz or some internet site...I want you to provide us with the peer-reviewed publication that shows causality between orchiotomy and/or long-term HRT and "Thyroid Disease"   :police:

Thanks!!!
  •  

Asfsd4214

Not to also be contrary to a well intentioned post, but isn't it more likely that the reason people with autoimmune thyroid disease is the same reason women are more likely to get almost every autoimmune disease?
  •  

DriftingCrow

ਮਨਿ ਜੀਤੈ ਜਗੁ ਜੀਤੁ
  •  

Sarah Louise

There are all kinds of risks involved when you play with your hormone balance. 

Lets not overreact.  This is one of the reasons we enforce the rule of no self medication. 

Anyones thyroid can stop functioning, that is why we see doctors.  I take thyroid medication, some others here do too, but then many don't. 

If you research thyroid symptoms and feel you meet them, you see your doctor and tell them your concerns.
Nameless here for evermore!;  Merely this, and nothing more;
Tis the wind and nothing more!;  Quoth the Raven, "Nevermore!!"
  •  

Flan

Quote from: Sarah Louise on March 18, 2013, 05:57:28 PM
There are all kinds of risks involved when you play with your hormone balance. 

Lets not overreact.  This is one of the reasons we enforce the rule of no self medication. 

Anyones thyroid can stop functioning, that is why we see doctors.  I take thyroid medication, some others here do too, but then many don't. 

If you research thyroid symptoms and feel you meet them, you see your doctor and tell them your concerns.
^ this
It's best to never assume either health or disease. It's the entire point of the medical professions: because if the inability for many to honestly assess themselves.
Soft kitty, warm kitty, little ball of fur. Happy kitty, sleepy kitty, purr, purr, purr.
  •  

peky

If anything the study below indicates that lower estrogen may trigger Hashimoto's syndrome in women

J Autoimmun. 2012 Jun;38(4):315-21. doi: 10.1016/j.jaut.2012.01.015. Epub 2012 Feb 18.
Autoimmune disorders in women with turner syndrome and women with karyotypically normal primary ovarian insufficiency.
Bakalov VK, Gutin L, Cheng CM, Zhou J, Sheth P, Shah K, Arepalli S, Vanderhoof V, Nelson LM, Bondy CA.
Source

Section on Epigenetics & Development, Program on Developmental Endocrinology and Genetics, National Institute of Child Health and Human Development, 10 Center Dr. CRC 1-3330; Bethesda, MD 20892-1103, USA. bakalov@mail.nih.gov
Abstract

The higher prevalence of autoimmune diseases in women compared to men could be due to effects of ovarian hormones, pregnancy and/or the presence of a second X chromosome. To elucidate the role of these factors, we investigated the prevalence and spectrum of autoimmune diagnoses in women with primary ovarian insufficiency associated with X chromosome monosomy (Turner syndrome, TS, n = 244) and women with karyotypically normal (46,XX) primary ovarian insufficiency (POI, n = 457) in a prospective study, conducted at the National Institutes of Health. We compared the study group prevalence to normative data for the U.S. population of women. Chronic lymphocytic (Hashimoto's) thyroiditis (HT) occurred in 37% of women with TS vs. 15% with POI (P < 0.0001); HT prevalence in both ovarian insufficiency groups significantly exceeded that in U.S. population of women (5.8%). Inflammatory bowel (IBD, 4%) and celiac disease (CD, 2.7%) were significantly increased in TS, but not in POI. No other autoimmune diagnosis, including Graves' disease or Type 1 diabetes appears to be significantly increased in either group. Women with TS had higher pro-inflammatory IL6 and TGF β1 levels (p < 0.0001 for both), and lower anti-inflammatory IL10 and TGF β2 levels (p < 0.005 for both) compared to POI and to normal volunteers.
QuoteLifetime estrogen exposure and parity were significantly lower in TS compared to POI, which were in turn lower than the general population of women.
The finding that lymphocytic thyroiditis is greatly increased in both women with TS and POI suggests that factors associated with ovarian insufficiency per se promote this form of autoimmunity. The absence of a normal second X-chromosome further contributes to increased autoimmunity in TS.




  •  

Catherine Sarah

Hi Peky,

Although your point may well be justified, I'm not totally sure as to whether it is related to the condition Jasmine referred to.

Your article is specifically related to the Autoimmune disorder in women presenting with Turner syndrome and Karyotipically normal primary ovarian insufficiency.

This may not be related to Jasmine's condition, which thankfully was detected and remediated.

Huggs
Catherine




If you're in Australia and are subject to Domestic Violence or Violence against Women, call 1800-RESPECT (1800-737-7328) for assistance.
  •  

JoanneL

I was diagnosed with an underactive thyroid 40 years ago after becoming very weak, overweight, loss of hair (now hairless from shoulders to toe) and minimum growth on face and neck. I have been on medication since. Everything in the body is slowed down and if left untreated death would follow.
This was many years before beginning HRT. At least no electrolysis is required. Maybe I was a girl at birth (LOL). Doctors told me the condition can be inherited.
ffffffffffff
  •  

Princess_Jasmine

My main point in all of this is that the dramatic hormonal shift / disruption of the HPTA axis caused by SRS/Orchi can set the stage for an autoimmune thyroid attack leaving one completely hypothyroid in just a couple of years. It happened to me, and it happened to others I know in real life. Therefore, this is something that everyone should be made aware of. Thank you!
  •  


peky

Quote from: Catherine Sarah on March 18, 2013, 11:22:03 PM
Hi Peky,

Although your point may well be justified, I'm not totally sure as to whether it is related to the condition Jasmine referred to.

Your article is specifically related to the Autoimmune disorder in women presenting with Turner syndrome and Karyotipically normal primary ovarian insufficiency.

This may not be related to Jasmine's condition, which thankfully was detected and remediated.

Huggs
Catherine


Hashimoto's disease is an auto immuno disease that affects the thyroid causing hypothyroidsm with the associate effects.
The OP implied that Hashimoto's disease is some how how triggered by HRT.

What the paper i posted describes is that the incidence of Hashimoto's disease is higher in women with Turner's syndrom and ovarian insuficience as compared to normal women. Women with Turner's syndrom or ovarian insuficiency have abnormaly low levels of estrogene. Therefore the papers suggest that perhaps lower estrogen may trigger Hashimoto's disease which is the oposite of what the OP implied.

Hope this helps

Hashimoto'
  •  

Princess_Jasmine


Quote from: peky on March 19, 2013, 04:06:43 PM

Hashimoto's disease is an auto immuno disease that affects the thyroid causing hypothyroidsm with the associate effects.
The OP implied that Hashimoto's disease is some how how triggered by HRT.

What the paper i posted describes is that the incidence of Hashimoto's disease is higher in women with Turner's syndrom and ovarian insuficience as compared to normal women. Women with Turner's syndrom or ovarian insuficiency have abnormaly low levels of estrogene. Therefore the papers suggest that perhaps lower estrogen may trigger Hashimoto's disease which is the oposite of what the OP implied.

Hope this helps

Hashimoto'

Hi Peky! Sorry but as I have already posted, I am implying that autoimmune hypothyroidism can be triggered by Orchi/Srs (according to my own experience and a couple of girls I know of in person who have gone through SRS/orchi). It did happen to one girl who was on HRT for 3 years, but that was not my main point. I just edited my original post to help clear the confusion too. As I have said before,

Quote from: Princess_Jasmine on March 19, 2013, 04:18:42 AM
My main point in all of this is that the dramatic hormonal shift / disruption of the HPTA axis caused by SRS/Orchi can set the stage for an autoimmune thyroid attack leaving one completely hypothyroid in just a couple of years. It happened to me, and it happened to others I know in real life. Therefore, this is something that everyone should be made aware of. Thank you!
  •  

whunder_stix

Quote from: Princess_Jasmine on March 18, 2013, 11:09:04 AM
Dear everyone on Susans.

I would like everyone to be made aware of a very serious health problem that can happen to you when you go through SRS/orchi. This may or may not happen to you, but you should be aware of the symptoms so that you can get it treated in order to ensure a successful transition. I am talking about AUTOIMMUNE THYROID DISEASE, that is usually triggered by dramatic hormonal shifts/disruption of HPTA axis. So, it makes sense why myself and many other transpeople I know also experience this disease due to the disruption of HPTA axis after both SRS and Orchi. I have heard of it happening to one Tgirl I do not know personally after 3 years on hormones and no surgery, but my own experience is that SRS and Orchi have triggered it among both myself and other Tgirls I am close friends with in real life.

I have been posting on these forums for approximately 3 years now, but for the past 2 years I have been posting about how I have defeminized post op, regardless of how "optimal, low, or high" my estrogen levels have been. My breasts have diminished, I grew weird facial hairs I did not have before, developed depression and fatigue, and also developed serious brain fog. I never had any such symptoms or this feeling of "loss of my old self" before my SRS. My HRT blood tests would come back perfect And FINALLY I have figured out the problem!

Finally, after 2 years, I broke down in front of my teacher at school during her office hours and told her all of the problems I had been having (brain fog, hair loss, depression, no energy, never feeling tired, never feeling hungry, weight fluctuations, food intolerances) and I told her I had nothing to be depressed about but yet I was. She looked at me like it was an epiphany moment and told me the exact same thing happened to her after she gave birth to her second child. She told me giving birth the second time around triggered autoimmune hypothyroidism that went undiagnosed for 12 years before a doctor finally did the right tests and treated her for it. I told her all of my doctors tested my TSH and they always called me and said it was fine. I also told her that most doctors laughed at me when I asked if I was hypothyroid because they said only overweight people could have hypothyroidism. Surely, they said, someone who was a skinny girl like me could not possibly have it. One doctor even laughed at me and said "well you're skinny so you if you do have a thyroid problem, you're probably hyperthyroid and not hypo!" My teacher, flabbergasted, told me that the TSH is a pituitary hormone and can take many many years (in her case it took 12) before the TSH matched how low her actual thyroid hormone levels (free t3 and free t4) had been all along. She urged me to go get a bunch of tests done, and so I found an endocrinologist willing to do it. After visiting countless endocrinologists, I found one (who ironically goes to my church) to do all of the correct tests for my thyroid (a full thyroid panel, not just the TSH like most doctors).

Well, wouldn't you know it! At only 21 years old, my SRS for me triggered autoimmune thyroid disease. My thyroid labs came back, and my thyroid hormones (free t3 and free t4) were at the bottom of the range! Also, the explanation of how the thyroid goes through stages of hyper and hypo over a period of months to leaving one completely hypothyroid after a couple of years perfectly explained why every couple of months everything continued to worsen (weight fluctuations, hair loss, etc)! I also have read on another forum of another T-girl who went through exactly what I did, except she never had her surgery. She had simply been on hormones for three years, and something "changed" like it did for me after my surgery.

I am finally being treated for this condition, and I am on the path to feeling like my old self again! It takes a while for your body to readjust, but my depression is gone (yay!!) and already my body is looking back to its feminine self :D The reason I feel this is necessary to be made known to everyone is that I know of at least a couple of other T-girls in person who have the exact story as me as soon as they completed their SRS, and I am shocked at how common it is. The part of this all that irritates me is that most doctors will blame it on depression, especially if you are female and especially if you tell them that you're trans. It's simply assumed that depression is always the cause, but for me I knew it was a side effect of something else (not the cause)! I just know my body and I knew something was not right. I never thought something like this could happen to me at only 21 years old, but I am hoping that my story will urge others to go get their thyroid checked if they are experiencing the same symptoms after their SRS/orchi or having been on HRT for years. Now at age 23, it took me 2 years to finally put this mystery together, and I hope that everyone will be made aware of how autoimmune thyroid disease can really put the brakes on your transition no matter what stage you are in.

P.S. I forgot to mention that the "adrenal overdrive" that some people notice after SRS/orchi is likely due to the beginning stages of hypothyroidism, where the thyroid actually goes hyperthyroid. Hyperthyroidism triggers the adrenal glands to release higher cortisol/hormones in order to block excessive thyroid hormone levels from pooling in the blood. Some people are lucky, and the thyroid will regulate itself after this stage and function normally. However, others will be left with autoimmune hypothyroidism. Just some of my research I thought I would share :)

Kisses and hugs to all of my sisters :) xoxo

By any chance, Princess Jasmine, are you still around here? I posted recently about having the EXACT same problems you are describing. I am 20 years old and had my Orchiectomy when I was 19, and since then everything seems to be going completely downhill, as if I had never taken hormones. I've been through all the different estrogens (even those that have worked for me in the past) just like you mention. I can't respond to Private Messages yet, but it would be great if there was a way to contact you so I could discuss this with someone who knows what I'm going through, and maybe knows the way out. I hope things continue to be going well for you?

Please let me know.

Ashley
  •  

Sarah Louise

Diabetics are prone to thyroid issues also.  Everyone is, my wife had half of her thyroid removed, it happens.  Your not at any additional risk just because of taking hormones.
Nameless here for evermore!;  Merely this, and nothing more;
Tis the wind and nothing more!;  Quoth the Raven, "Nevermore!!"
  •  

Night Haven

Quote from: LearnedHand on March 18, 2013, 05:32:00 PM
Is this just applicable to MTFs or FTMs as well?

I have to second LearnedHand. Could this apply to those who've gotten oophorectomies as well?
-Fight for the changes you want to see made; become the changes you want to see in the world.-

-The world is worse enough as it is; let us be and let be. Let's stop spreading hate and start spreading acceptance...-
  •