HRT mess!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Silverlining
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HRT mess!

Postby Silverlining » Thu Nov 02, 2017 7:33 am

I could post the following in any number of current threads but decided to create a separate post so as not to muddy the others. (BTW, hi and hugs to all my old friends and amazing new members. Our site is like no other and far superior IMO :).)

The back story: I started the .1mg estradiol patch and 100 mg of progesterone Feb. 2016. I pulled my own labs every 3- 4 months as my gynecologist doesn't believe serum or ANY hormones labs are meaningful. She just treats by symptoms. My labs the day I started the patch were: estradiol undetectable and progesterone 1.9 ng/ml. Since then, I've watched my estradiol steadily climb and my progesterone diminish. I was also supplementing with 10mg micronized dhea as my levels have always been 50's which is very low end. I quit the 10 mg dhea February 2017 because my hair started thinning significantly, now I'm not convinced that was the problem.

Current situation: I visited both my gynecologist and dermatologist for annual exams this month. I've previously expressed my concern over the estradiol increase to my gyno, but she dismissed them immediately. At my visit two weeks ago, I mentioned my sister is on 200 mg progesterone continually (no cycling) and the gyno said, "you can go on that too, no cycling is needed". So, she wrote me a script for the increased dosage of progesterone. She also ordered ultrasound to monitor endometrium and a very large and growing fibroid. Meanwhile, at dermatologist, he suggested labs for the hair loss. So, I got the pelvic ultrasound, paid for my own hormone labs and also submitted for the dermatologist labs. Here are the results: Estradiol 150 pg/ml, Progesterone .4 ng/ml, dhea-s 33.3 ug/dl (below range), testosterone and free testosterone undetectable, Ferritin 10 ng/ml (below range), RBC just under range. The ultrasound revealed a ridiculous and concerning increase in endometrial lining from 3mm a year ago to 11mm now. My gynecologist has not contacted me regarding the ultrasound, I picked up the report myself from radiology.

Obviously I have extreme estrogen dominance and mildish iron deficiency anemia. I probably need to call my gynecologist re: the thickened lining situation. Since I just had a normal pap smear and pelvic ultrasound, I'm assuming she's not concerned about cancer and that's why I've not heard from them? She might be thinking the increased progesterone will shrink the lining?

My plan: I change my estradiol patch twice a week. So starting this week, I'm taking the patch off twelve hours before each change so I'm completely estrogen free for 24 hours a week in the hopes this will knock back on the estradiol. I'm taking the doubled progesterone every night. I'm focusing HARD on iron rich foods intake with vit c for absorption. (being a vegetarian makes increasing iron more difficult for sure). I'm also taking one ferrous fumarate pill a day. I'm a heterozygous carrier for hemochromatosis, but don't think that's an issue to be concerned about now. I believe the hair loss is a combo of low iron, low progesterone. I plan to retest my labs in one month. I'm hoping to see an increase in progesterone, decrease in estrogen, increase in testosterone and dhea-s (I read progesterone can affect all of these). I will consider supplementing with ashwagandha or possibly dhea if I don't see improvement in say 2 months? I guess I'll request a repeat ultrasound in three months? I am definitely experiencing a very low mood which I attribute to all of the above. I'm doing fairly well with disciplining myself with my normal regular exercise and giving myself breaks from social obligations when I'm feeling especially down. I do practice mindfulness and self talk :). Hoping this all turns around soon.

Any advice on my plan is welcome. Thanks! Silver (I'm 53, apoe 4/4)

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SusanJ
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Re: HRT mess!

Postby SusanJ » Thu Nov 02, 2017 8:24 am

Wow, Silver. I agree, this hormone stuff is hard!

My only advice is that you watch your mood with the increased progesterone. I just couldn't do even 100 mg without cycling (15 days on/off), so I'm currently on 0.025 estrogen patch to hopefully avoid the thickened lining problem. Will retest my levels at the month to see if this keeps me in the ballpark.

Hope others have ideas for you.

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slacker
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Re: HRT mess!

Postby slacker » Thu Nov 02, 2017 9:03 am

Silverlining wrote:
Current situation: I visited both my gynecologist and dermatologist for annual exams this month. I've previously expressed my concern over the estradiol increase to my gyno, but she dismissed them immediately. At my visit two weeks ago, I mentioned my sister is on 200 mg progesterone continually (no cycling) and the gyno said, "you can go on that too, no cycling is needed". So, she wrote me a script for the increased dosage of progesterone. She also ordered ultrasound to monitor endometrium and a very large and growing fibroid. Meanwhile, at dermatologist, he suggested labs for the hair loss. So, I got the pelvic ultrasound, paid for my own hormone labs and also submitted for the dermatologist labs. Here are the results: Estradiol 150 pg/ml, Progesterone .4 ng/ml, dhea-s 33.3 ug/dl (below range), testosterone and free testosterone undetectable, Ferritin 10 ng/ml (below range), RBC just under range. The ultrasound revealed a ridiculous and concerning increase in endometrial lining from 3mm a year ago to 11mm now. My gynecologist has not contacted me regarding the ultrasound, I picked up the report myself from radiology.



Silver;

I am concerned about your transvaginal ultrasound results and wonder if you need to seek out someone with more expertise in bioidentical hormone replacement. This is not taught in conventional medical training programs in the USA. Individual providers with an interest must seek out training - and who’s to know which trainings are reputable? But I digress…

I can only guess why you have not heard from your gynecologist with your US results, and commend you for being proactive and getting a copy for yourself. The next step in being proactive is to call the office and leave a message requesting advice/recommendations. Bear in mind that pap smears screen for cervical cancer, not endometrial cancer. The sampling must be taken inside the uterus to get an endometrial biopsy.

I performed a cursory search of pubmed to determine what thickness of endometrial lining in a post menopausal woman without vaginal bleeding is of concern. The answer is that no one knows (in the US). Here are two articles; the one that gives specific advice (article #2) is over 10 years old (gyne health research poorly funded IMHO). It is possible that other countries have more specific guidelines on when to send for biopsy.

Diagnostic value of sonography for detecting endometrial pathologies in postmenopausal women with and without bleeding
https://www.ncbi.nlm.nih.gov/pubmed/26857098

How thick is too thick? When endometrial thickness should prompt biopsy in postmenopausal women without vaginal bleeding.
https://www.ncbi.nlm.nih.gov/pubmed/15386607

Good luck!
Slacker
E4/E4

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KatieS
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Re: HRT mess!

Postby KatieS » Thu Nov 02, 2017 9:10 am

Silver, can you cut your patch in half, with the goal of a estradiol level ~75? My Gyn doesn't believe in levels either, just symptoms and in the past monitoring the endometrium. Obviously, you do not want the lining and fibroid to grow with high estradiol levels. Like Susan said, be careful with the higher progesterone dose. My vague headache is gone after taking a few days off the progesterone 100mg. Maybe have the progesterone filled with the 100mg dose so you can start with two and titrate down after another ultrasound detects less endometrial built-up and labs confirm lower estradiol levels. Many of us experience progesterone-related sluggishness, mood or headaches, but Stavia's post on the rat's evidence of positive brain benefits from intermittent progesterone (plus the required endometrial protection) supports our motivation to endure mild side effects.

As another heterozygous hemochromatosis carrier, I run a low ferritin (iron stores), but my uptake in borderline high and hematocrit is in the low 40s. What is your hematocrit? Usually carriers over absorb iron, so I'm not sure I would supplement unless the hematocrit is low consistent with iron deficiency.

I thought my hair was thinning, but my dermatologist refuted, but my seems to be thickening again. We'll have to do a separate hair post.

Good to hear from you again.

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Re: HRT mess!

Postby Julie G » Thu Nov 02, 2017 9:12 am

(((Silver))) No easy answers, but I'm wondering if your thyroid might be involved. Low DHEA and HYPOthyroidism often go hand-in-hand. Hard to say which causes which. Also, wondering if you've had your cortisol levels checked. (A 24-hour salivary test is best.) High cortisol can cause low DHEA (master hormone) which could in turn lead to your reduced ability to maintain progesterone. One last thought, you need adequate healthy dietary fat for DHEA production. I'm not sure where you're at with that...

Is the fibroid new for you? Mine shrunk with approaching menopause (and an embolization procedure) then also began growing with bHRT. Frustrating. I needed the hormones for my brain and ultimately ended up with a hysterectomy because of multiple issues (aside from the fibroid) related to my connective tissue disorder. It was an awful surgery, but so worth it because now I can focus on simply balancing my hormones.

You didn't mention your current estradiol level. Also, how are your meno symptoms; i.e. hot flashes? I recall they were awful like mine. Keep hacking, my friend. Getting your progesterone levels up feels important. xo

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Re: HRT mess!

Postby Stavia » Thu Nov 02, 2017 12:32 pm

Silver darling
1. first a hug
2. you unfortunately may need an endometrial biopsy to look for atypical hyperplasia. It doesn't show on a pap smear which only samples the cervix. Its extremely unlikely that its developed into endometrial cancer, the timeframe is too short. I'd find another gynae if you're not happy with your one. In the meantime if its going to be a while before the biopsy you could try a withdrawal bleed ie go off everything for a week. It's going to be a heavy period, sorry; but IMO its better to shed the endometrium. Then 200mg progesterone and a lower oestrogen dose might be better as you've correctly identified. Maybe you need to cycle the progesterone and have a period every month. ie 24 on, 7 off.
This is not medical advice, its things I'd consider if I were you.
3. The iron deficiency is likely a significant, if not the main, cause of your hair thinning. You are very very far from the haemochromatosis being a problem. What dose are you taking in mgs?

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Stavia
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Re: HRT mess!

Postby Stavia » Thu Nov 02, 2017 12:36 pm

and as Katie said, you can cut the patch. Taking it off for 12 hrs won't lower the peak which is the issue.

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Silverlining
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Re: HRT mess!

Postby Silverlining » Fri Nov 03, 2017 5:21 am

Thank you all. You guys are the best! My husband is in awe of how wonderfully informative and supportive you are all...

Susan, my mood is pretty awful, but I'm not sure if it's the hormones, the low iron or maybe coming home to lots of stress after spending the summer in beautiful Montana :lol: . If I don't turn around soon, I'm definitely adding ashwagandha and/or dhea.
Slacker, I did call my dr. office. Apparently the lining is just under the cutoff for high concern in postmenopausal with HRT. They plan to do another ultrasound in 6 months. They also indicated I can come in for an office visit to discuss removal of fibroid (uterus?), but that's all so scary as I have connective tissue dysfunction which predisposes me to prolapse issues and I don't think my little/big "friend" is bothering me....
Katie, my hematocrit is at the bottom of normal, so feeling ok with that and the iron pill. I've been doing the iron thing for a week. My fingernails actually seem to be growing just a bit, which is crazy, if true. They were curling under and breaking off at or below the quick...so maybe hair and fingernails are responding already, just a little...one can hope :). I agree with you on shooting for an estradiol level of 75ish.
Julie, my estradiol level is 150, so higher than I want. My fibroid has been around for a while, but grew significantly with the high E :(. I do take levothyroxine and my levels are good. Yes, I had terrible hot flashes w/o HRT, but none with HRT. I do eat a high fat diet with mostly the "good" fats so I think I'm naturally low in dhea...I may add it back in once I see what the progesterone and reduced patch are doing.
Stavia, I'm taking 325mg iron a day, as well as really focusing on the food/vit c thing. Also, trying to cut out my half Pepcid (GERD caused by connective tissue problem) to avoid absorption issues. I'm also rapidly approaching osteoporosis, so trying to balance calcium intake/iron intake; keeping them hours apart is such a hassle, but it is what it is. Thanks for the patch advice, I cut mine by approx. 20% last night, so will see how it goes. I shudder (violently!) when considering invoking a BIG BLEED lol. Would my factor five leiden be an issue if I choose to go off everything for a week? Would a big shedding affect my iron count?
I am definitely going to spend the bucks to test hormones once a month for 3-4 months. For $75, I get estradiol, progesterone, dhea-s, testosterone, free T. So it's worth it to me.

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Stavia
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Re: HRT mess!

Postby Stavia » Fri Nov 03, 2017 12:54 pm

Silver darling, yup you're right. A withdrawal bleed will dump your hard won iron. I didn't consider that. If you're under the cutoff for endometrial thickness in your country, then your insurance wont pay right? The only way to reduce the lining then is to adjust the doses.

Anne Hathaway uses 40 to 80 as targets for HRT. The corresponding progesterone levels she aims for are in my report on our San Diego conference. IMO reducing your oestrogen patch size, increasing the progesterone and testing seems to be the obvious and easiet way to proceed at this stage.

Your situation is complicated. So many factors. But your iron dose is correct. It will work. It'll take a few months to replenish

Love you darling.

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