Hormonal issues/ MTHFR / high testosterone

Posted by twill88 @twill88, Jul 23, 2019

Hi, I’m an 18 year old girl with MTHFR who is currently in a bit of a pickle. Well, a big pickle. Here’s some background
I am 5’1 and weigh 92 pounds, which is the heaviest i’ve ever been in my life. I can’t gain weight, mostly due to my mthfr. My family is full of women with big boobs, tiny waists, and big hips/butts, i cannot find a single girl like myself on either side of my family tree, not one. I always thought this was super weird, and I always thought it was really weird that I had the skeletal structure I did. My family, both sides, all have very pear shaped bodies. yet, I am a triangle, Giant shoulders and narrow tall hips that dont flare out in the slightest. I appear very masculine and also have a lot of hair growth everywhere. I get on birth control pills and stay on them for 3 years, Finally develop some sort of breasts, but after being diagnosed with MTHFR, I am taken off my birth control pills.

Flash forward to this year and I find out that I have EXTREMELY HIGH testosterone. Like, an 18 year old male has less testosterone in their body than I do. My doctor explains to me that this is probably why I developed a literal male skeleton, and all my masculine features, and that my breasts were only really a result of my birth control pills. Well, having been off them for almost a year now ive lost 3 inches of breast tissue, and many mental/physical issues have returned. They dont want to put me back on birth control pills because of my MTHFR, but I worry that Its unhealthy for my breasts/uterus/ovaries to have this much testosterone, not to mention the affects it has on my appearance is driving me to suicidal level bad mental health. Ive always struggled with body issues and this is to the point where I’ve relapsed in self harming, and constantly cry myself to sleep. Also, In regards to the breast issue I also cant get breast implants due to my MTHFR, incase anyone was gonna suggest that.

For anyone curious, I dont have testi- tissue, nore do i have any tumors,chromasomal abnormalities, Or PCOS. they have yet to identify a reason for my weird hormones.

Am I just destined to suffer? Do yall know something I dont? have you been through something similar??? I need help. Im going insane. Doctors have yet to be able to help me. Im going insane. I need some sort of advice.

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@twill88 Welcome to connect twill88 we aren't Dr,s but try to give our advice on our own issues and suggestions . May I ask what kind of Dr. are you seeing . For hormone I would suggest you see a endrocrinoligist I had an issue one time of thyroid problems the Dr. found the problem and put me on medication for it . I'm sure there are other people here that can give you some more information. Do they say what is causing your testosterone to be so high? I hope you find the answers your looking for I hope you come back to us and post again We here care about you . I will look at other sites to see if I can find you anything . I found some sites you might want to look at . Healthy and naturel world.com ,www.restartmd.com


@twill88 I’m sorry you have not gotten any responses other than from @lioness, but your situation really is a a bewildering one. I think her suggestion to see an endocrinologist is probably a good one. If you are not going to a major medical center I would highly advise that. They have seen so much more than your typical doctor at a regular hospital that they are more apt to be able to help you. If you google for hospital ratings the gold standard is probably the US News reviews. Find a highly rated hospital close to where you live and make an appointment, even if it’s not very close. I live in NH but have learned to go to Boston to Mass General Hospital which is rated second in the country, only surpassed by Mayo in Rochester. I consider that to be close, it’s about 55 miles away, a two hour drive during the day.
Please let me know if I can help you at all, or if you do make progress.


Please keep us updated. I cannot be of any help since I have never heard of this,but I can surely add compassion as it must be agonizing not getting any medical help. One idea: there is a New York Times magazine series about difficult to analyze medical issues. It is written by a doctor from Yale medical school ( a woman) and is now being televised on Netflix. I’ll send the name in another post but in the meantime contact the editor of NYT magazine. I don’t know where you live (I live on west coast) but NYT should be available to you online.I believe you can be helped!


@twill88 Good advice from @lioness – are any of your doctors endrocrinologists? Some of your symptoms were also mine when I was 18, and I went to eight different specialists in Chicago, including the University of Chicago, before beginning a journey that would lead to a diagnosis – finally – when I was 30. To encourage you a bit, I hope, I am now 80, so you most definitely have hope! To not say the wrong thing, I want to ask a couple of questions, but share only if you feel comfortable answering. Were you given birth control pills for medical reasons? Do you have regular periods? On what basis were you deemed to not have PCOS? Other than a decrease in the size of your breasts, have you had any other symptoms as a result of not taking birth control pills? At your age of 18, I can well understand the emotional side of your problems – I got some well-meant but totally wrong medical information from non medical sources which made me feel as if I were really weird, and so I kept my "illness" a secret for many years. It wasn't an illness, it was a birth defect. Please do not compare yourself physically to other female family members or friends – no one in my quite extensive family had anything even remotely similar to my problems. Ask you doctor to refer you to someone who can counsel you a bit about all this – I had no one but back then, there really wasn't anyone who could help me. Please keep us all posted on how things are going, and know there are folks here quite ready to listen and not judge. Take care.


Hello Twill.. I’m Debra. I just must say do not ever get breast implants. There is a group of several hundred women who discuss breast implant illness!! (BII). Breast implants contain heavy metals and can cause a certain type of breast cancer. They will cause only more problems and make you sick. I had implants for 33 years!!! I couldn’t figure out why I never felt well. Fiibromyalgia. Arthritis. Burning mouth syndrome. Dry eyes. Weight gain. Metallic taste , brain fog , fatigue. For more info on NOT GETTING BREAST IMPLANTS go to BREAST IMPLANT ILLNESS BY NICOLE on FB. One must join to read posts etc. you have enough to deal with. My surgeon does breast reconstruction on mastectomy patients and stopped placing silicone implants as some became ill also on top of devastating cancer. Please put that idea away. Mayo Clinic is amazing. Have you ever had an MRI to rule out a pituitary tumor?? Or adrenal tumor??? Usually not cancerous but can wreak hormonal havoc!!! I’m a nurse. These are my thoughts and experiences. You are beautiful no matter what. Call on Jesus to sustain you. I’ll be praying for God to heal you through finding a great endocrinologist 🙏🙏🙏🌺🌺🌺💖💖👍🌸🌸🌸

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