Hormone hell

[Chesleyt (imported)]

I've recently see the Endocrinologist and not the Physician's Assistant for my care after they messed up. I've been using estrogen cream since march at 1 mg daily and had my estradol level at 96 pg/dl and felt great. My Endocrinologist is working with my hormones and has put me on Climara .25 mg continuous release patches changed every 7 days and I'm to start 50 mg testosterone once a month because my oncologist said I needed to start it again. I won't start the testosterone until August 8th that will be after my blood work had been done earlier in the week. Now here's the problem he cut my estrogen by 3/4 and I'm not feeling good I'm having hot flashes brain fog and I cry for no reason the tears just start coming down my face. I won't be seeing him again until the 18th. I called him and he just wants me to continue as things the way they are. I'm in an emotional rollercoaster.

[TopManFL (imported)]

Hey @Chesleyt ,

I can't tell you how sad I am that you are going through this. I've been trough hormone hell but, with thyroid hormones. The fact that there was a very good reason to put me through 16 weeks of hormone hell followed by 5 years of hormone "hell light" did not make me feel any better. Endocronologists are so difficult to find. When you find one, you almost have to put up with whatever they say because there are so few of them.

Here is what I did when i was going through hormone hell. Well, first I was a hot mess and then this is what I did.

I made an appointment to see my primary care doctor. Normally, I am the easiest patient. I do all my labs, I show up on time, I pay my bill and I don't lie to the doctor. If I am not doing something, I tell the doctor - and then quickly say, "I know you would rather I tell you I'm not taking the prescription than just not take it and not tell you." But, that is rare. Normally, I am very compliant. My appointments normally go fast, we chat, I point out that the same doctor that tells me not to have more than two 6oz cups of coffee a day is holding an $8.00 double shot latte from Starbucks and she laughs.

However, when I was going through hormone hell, I insisted on being squeezed into the schedule. I have only done that a few times my whole life, I told them that I would just show up because the doctor had told me to do that in the past he tells patients that and the staff knows he tells patients to just show up and they hate it. They found an appointment for me to see my Doctor's PA.

I don't have the relationship with the PA that I do with my primary doctor but, he's treated me before and was happy to see me. He asked me, "how are you doing?".

I said, "I am needy and high maintenance, nothing is right, I can't live like this and the Endocronologist is saying to 'push through it'".

Because my brain was in a fog and I was thinking all over the place, I wrote down what the Endo had done.

=== SKIP THIS PART UNLESS YOU REALLY WANT TO KNOW HOW THE THYROID CANCER IS TREATED BY PUTTING PATIENTS ON A HORMOME ROLLER COASTER ===

Taken me off of all thyroid medications after a total radical thyroidectomy for 8 weeks - to be clear, no thyroid hormones at all for two months - and then a thyroid bed ablation with I-131 which is 150 milli curi of radiation in iodine. After the ablation of the thyroid bed, the Endo then put me on thyroid hormones designed to get my hormones as high as possible. It takes between 4 to 6 weeks for those hormones to build up in the body.

A Blood test called TSH is the gold standard for how thyroid hormones are doing. It measures a hormone put out by the pituitary gland called Thyroid Stimulating Hormone. The thyroid "listens" to TSH in the blood and makes more thyroid hormones. When the pituitary wants more T4 (thyroid hormones) it puts out TSH and the Thyroid makes T4.

So, TSH is inverse of how much T4 is in the body. Low TSH means there is a high amount of T4. High TSH means there is a low amount of T4 in the body. Labs use different reference ranges but, most labs say that normal is between 1 and 4 of TSH. In that range and your thyroid is working fine.

After my Thyroidectomy, I went 8 weeks with no thyroid hormones. My TSH was list at greater than 100. Remember, 4 is the top of the normal range. My TSH could have been 101 or it could have been 900. When the test came back as greater than 100, there wasn't anything the lab could do to give us more information and really, it didn't matter.

Greater than 100 meant I had no T4 in my body. No wonder I wanted to kill the whole world but, was too tired to get out of bed and go do it.

Then, after the ablation they put me on massive doses of Levothyroxine which is a synthetic T4. After 8 weeks they tested my TSH again and the number was .006 which was exactly where the doctor wanted it.

Normal range is 1 to 4 and I had gone from Greater Than 100 to .006 in 8 weeks.

My mind was a cluster fuck of emotions, half thoughts, forgetfulness, anger, fear, sometimes fog, sometimes feeling like I wanted to clean out every closet and drawer in my house and at other times I just wanted to say "fuck it" and move out of the house and rent a furnished apartment.

I showed the PA the lab work, I had written down all the dates of when hormones were started, stopped, and how I felt.

The PA told me I was in the right place. He said, the Endocronologist was treating my cancer perfectly and at the same time the cancer treatment was ready to make me insane.

The PA diagnosed me as having a thyroid storm. He could not stop the thyroid storm. No Doctor nor PA will touch an Endocronologists' prescription unless the Endo has literally died.* But, he could give me prescriptions to calm me down.

The PA gave me a medicine to help me get to sleep. He gave me an anti-anxiety medication to use as needed up to four times a day. He also adjusted some meds I was on for nueropathy.

The hormones stayed right where they were. But, the meds that my primary put in the mix saved me from going bad-shit crazy.

== = END OF HOW THYROID HORMONE HELL TREATS THYROID CANCER AND BACK TO HOW MY PRIMARY CARE DOCTOR HELPED ME ===

My experience is that seeking help for the symptoms at my primary help me deal with the hormone hell.

@Chesleyt, please go to your primary with a written page of your symptoms. Make the page easy to understand. The primary might not change the hormones but, they most likely can give you meds to treat the emotional rollercoaster riding around in hormone hell.

I purposefully did not tell you what medications my primary gave me for sleep and anxiety because I'm not a doctor. Maybe you need something similar to what I got or maybe you need something else. However, even not being a doctor, you need something to help you through this transition.

I think you can get help from your primary care doctor and at the same time stay on the treatment your Endo is giving you.

Please, take care of your self. You deserve to be happy and to get sound medical advice.

TMFL

-- Foot Notes ---

*That happened to me and five years post thyroidectomy - my Endocrinologist got cancer and died, so my primary care doctor made some minor adjustments and we created a plan of treatment that has my primary keeping my hormones in the normal range and I see an oncologist once or twice a year for some special blood work.

[Chesleyt (imported)]

My thyroid levels are at rock bottom I've been on synthetic thyroid medication t3 and t4 for years and have been on a rollercoaster with them also having to deal with my sex hormones. He just changed me to Armor thyroid to hopefully deal with this. Thanks for your story it is beneficial for me at this tumultuous time in my life. It's going to take time you have made me understand thanks. Your friend

[TopManFL (imported)]

My thyroid levels are at rock bottom I've been on synthetic thyroid medication t3 and t4 for years and have been on a rollercoaster with them also having to deal with my sex hormones. He just changed me to Armor thyroid to hopefully deal with this. Thanks for your story it is beneficial for me at this tumultuous time in my life. It's going to take time you have made me understand thanks. Your f

irend

Hey,

I hope the switch to Armor Thyroid works. I've heard some say it is the best thing ever.

I have Hashimoto's also but, it wasn't discovered until after the cancer was discovered. Also, my TSH, T3 and T4 were normal before the total thyroidectomy. So, I guess I was lucky.

Take care of yourself. None of what you are going through is easy.

I'll tell you the worst part in many ways for me is onions. I used to love onions on hamburgers, in salads, on tacos, etc. Now, I can not stand to be near a raw onion. All because they give me the purple pill instead of the brown one for levothyroxine.

Be kind to your doctors also. They have weird ideas - seriously, some of the ideas they have are seriously odd. Nevertheless, they are all we have.

[Chesleyt (imported)]

It's been a while since I last posted so thyroid medication is working great. Just got my estradiol and testosterone levels checked and both are in the lower castrated levels that's after a 250 mg testosterone shot a month ago that caused alot of problems estrogen is 30 pg/dl he was shooting for 40 pg/dl with the.25 mg patch I'm having hot flashes again and when I see him next week I will be asking for the next larger sized patch. Last Saturday I took my first .25 mg shot of testosterone cypinate and I feel good but I don't think it's enough for a whole month. I will be discussing it with him.the endocrinologist orderd a genetic test for a mutated gene and there are 2 variances that you can have and I have both. That explains most of my health issues and I can be treated easily and probably get off alot of my other medications. I'll be learning more on Tuesday afternoon.

[TopManFL (imported)]

It's been a while since I last posted so thyroid medication is working great. Just got my estradiol and testosterone levels checked and both are in the lower castrated levels that's after a 250 mg testosterone shot a month ago that caused alot of problems estrogen is 30 pg/dl he was shooting for 40 pg/dl with the.25 mg patch I'm having hot flashes again and when I see him next week I will be asking for the next larger sized patch. Last Saturday I took my first .25 mg shot of testosterone cypinate and I feel good but I don't think it's enough for a whole month. I will be discussing it with him.the endocrinologist orderd a genetic test for a mutated gene and there are 2 variances that you can have and I have both. That explains most of my health issues and I can be treated easily and probably get off alot of my other medications. I'll be learning more on Tuesday afternoon.

Hey @Chesleyt,

You seriously did great. I mean really great. I know you went through hormone hell and knowing hormones, you might again. But, this time you stuck to your guns, went to the doctor, told the truth, did the blood work and are willing to do all that again to stay on a path to good health.

Endocrinologists are super busy. They deal with diabetics that don't take their blood sugar as directed, don't take their medications as directed and then get crabby when they are told they need to start doing so.

Thyroid patients (I'm one) can be very unyielding and insist that they are having problems (I know because I do) when every number is exactly where the doctor wants it to be. I once told my endocrinologist that despite what I was told prior to radical thyroidectomy, that levothyroxine is a piss poor substitute for a working thyroid. He shrugged. What was he going to do, put the thyroid back in?

I used to have a boss who whenever I did something really well would say, "Ya done good." Then, in a teasing manner, she'd ad, "shithead". She only did that so I wouldn't get a big head and she did it to all her employees.

Sometimes, I do really well at the doctors and sometimes I just go to the appointment and look at the lab work to see if any of the numbers indicated I'll be dead by morning - if not, I just redo labs in 4 to 6 months and show up again. It is not easy for me to always want to talk about numbers on papers, if my bowel movements are normal (how the hell would I know? I never see anyone else's), if I'm eating right (I rarely do), to stand on the scale and either realize I've lost 15 pounds or gained 10 (I just blame it on their scale). Other times, I'm engaged and want to understand everything.

So, give yourself a pat on the back and then get back in the game. And one more time, Brava!

[Chesleyt (imported)]

Thanks. My family doctor got my test results also and called and wants to see me Friday to go over them. I looked up what my test results meant and I think that he is going to order more tests at least he looks at my test results and cares to call me if something is wrong. He is alot better than my last GP

[Chesleyt (imported)]

Saw my GP early and he didn't really do anything, I had saw my Endocrinologist on Monday and had some medication changes and brought the information with me. One is a form of folate because of the gene mutation I can't process folate into a usable form for my body so he gave me a refined form of folate that I can use. The other had to do with my estradiol patches my GP looked at it and asked me if I was castrated for a sex change I had to tell him for the 4th time that my testicles swelled up and died. Why does he think because I'm on low dose estrogen because I can't take testosterone that I want a sex change. It's because my adrenals aren't making enough estrogen or testosterone to keep my bones healthy and I already have osteopenia. Doctors only think in binary terms male/female they don't take into consideration the whole spectrum of sexuality.

[TopManFL (imported)]

Hey Chesleyt,

Again, congrats on doing things the right way. With primary care, endocrinologist, urologists, psychologist and most likely sever dozen "-ologists" I've yet to encounter, it is a battle field. My advice is keep going, do the lab work, show up for the appointments both in person and on the phone. It's more than advice, it's my experience.

Doctors can be very clinical and to the point. The question about using estrogen as a trans patient might have only been to guide the dosage. In other words, did you want to grow boobs and have fat redistributed to your hips or were you just attempting to ward off bone loss.

True story: After I had my foot crushed by a car that ran my foot over. I was told it would be in a cast for 20 weeks. I was inexperienced with doctors at the time and thought 20 weeks meant 20 weeks. Silly me. So, I went to the doctor and they took off the cast. Yeah! Then, they took x-rays and put the damn cast back on. I complained to the doctor and he said, "halitosis is bad but, it beats no breath at all".

To this way I have no idea what he meant. Well, other than, the cast was staying on.

Chesleyt, you are in so many ways a hero on this forum. You are doing it right. So, please keep us informed as to your progress. Even if you are frustrated and having a difficult time with your doctors, we need to hear that as well.

TMFL

[DesperateGirl (imported)]

Hello Chesleyt,

I back up TopManFL in his congratulations on you sticking with the -ologists and your GP to try and get your treatment balanced for you. Your thyroid medications complicate things compared to some of us here. I also find your experiences valuable in understanding the approach of the different parts of the medical profession - good and bad. Thank you.

Reading you last posts I am not sure - did you get an increase in patch size?