Bone Health

March 17, 2019

Alright, I've been honestly stressing out about all of this. It is echoing in my head. My bones depleted by 7% these last three years. Holy crud. In that time, I was basically pregnant or on hormones trying to get pregnant about a year...so I had the estrogen. Yikes. I'm also dealing with severely recessed gums. Last dentist exam instead of the usual, wow, your teeth are amazing, she said my oral hygiene wasn't as good. Excuse me? I brush a bazillion times per day, floss, use mouth wash. My gums are recessing faster. I have pockets. It's due to no estrogen.

I basically need to stick it out one more month to get the babies I donate breastmilk to, to one year. After that, I think I may need to bite the bullet and start the bioidenticals. My own son really only nurses morning and night now. When he's home, he will nurse at nap time or for emotional comfort. I think cutting back the pumping will help my body regain some nutrients. Pumping an extra 24-30 oz is a lot for a body to do. My endocrinologist did say some bone density will return once I wean.

I started taking the new calcium along with my other one. So now, I take two Young Living Super Cal Plus, two Garden of Life Raw Calcium. The Garden of life has the stronium in it, but a very, very small dose. I will start their Grow Bone once I wean. The reviews are fantastic and my endo gave me the go ahead. I also just started the Young Living BLM supplement. It has the glucosamine sulfate and collagen. I'm keeping up with the Biosil and current collagen I'm on as well. In a support group, someone mentioned taking Boron as well. Lo and behold, I did some research and very promising info. The raw calcium does have some, but since I'm doing a half dose of that, I did get a 3 mg supplement.

My sister in law suggested two workout sets, so I ordered these and these as well. The kiddos and I have been doing our exercises at night, I've been doing weights a few times a week, and I've been very diligent about making sure to at least take 20 minutes a day for a brisk walk. I'm doing jumping jacks every time I get up to get a drink or go to the bathroom from work, squatting holding my son, anything to fit in extra weight bearing exercise.

I think I feel panicky because I'm not doing everything I can, but I'm not emotionally done nursing and my son is nowhere near emotionally or physically done. I keep weighing my long term health vs where we're at now. I can't supplement with herbs or supplements, I'm nervous starting BHRT... Ugh. I just need to take a breath. The reality is, a few extra months won't do long term damage. I just need to do what I can and trust. I can start on the BHRT once I'm done donating. "Normal" women have estrogen in their blood and milk all the time...granted this isn't naturally produced, but the effects are the same. I absolutely despise I need medication. I pray for no ill effects.

I just want my body to cooperate...

On a lighter note...still meal kit obsessed! LOL We got our second Sunbasket delivery and it was delicious! Well, we all agreed the sesame crusted tuna and salmon nicoise was. I thought the blackened tempeh was ok, my husband was a hard no. Ah well. I knew it was taking a chance. I'm trying to shift more plant based. For my initial Sunbasket review go here.  So far, that is the one I've been most impressed by overall.

I'm excited to try out Hello Fresh this week. Stay tuned ;)

Doctor Consult

May 4, 2015

Well, by endocrinologist called with my results. Other than my elevated LH and FSH and low estrogen, all my labs were normal. She even commented that my iron levels, although higher than normal, were far, far lower than she anticipated. She said I'm doing an excellent job managing my hemochromatosis.

She did say her recommendation was estrogen therapy to stop the bone loss. However, she told me until we were done trying to have children, that was out of the question as HRT would do nothing to prevent my bone loss. Interesting because that is what everyone seems to recommend for POF. She said HRT was a low dose estrogen, usually given to post menopausal woman to help with symptoms like hot flashes, but it was not a high enough dose to prevent bone loss in a 35 year old woman. She would put me on birth control pills, which is a much higher dose estrogen until I was 51, at the typical menopausal age.

I think a lot of POF advocates would disagree with the above assessment as HRT is touted as helping to prevent bone loss. I honestly just don't know who or what to believe. In my heart, I don't like the idea of a lifetime of pharmaceuticals that have a list a mile long of side effects.

I did appreciate she didn't push the subject. She said I have to be ready to give up the thought of having a baby first. We scheduled a dexa scan for in two years. She said without therapy she didn't anticipate it getting better, but with calcium, vitamin D and weight bearing exercises hopefully it wouldn't worsen too much.

I did ask her about just having bone loss in the spine and she said there was a bit in my hips as well. They define bone loss as two standard deviations away from another woman my same age. So, -2 is the cut off. My hips were -2.1 and my spine -2.3. So, although it does show bone loss, I don't think it's too alarming to be so slightly below. Given my petite size and low body mass, it's typical to be on the low end of that bell curve.

I really don't like the thought of birth control for the rest of my life. I blame part of my issues on being on it for 15 years to start with. For now, I think I'll just concentrate on being healthy and supplementing. There are a few oils and supplements that are phytoestrogens that I'd like to try to incorporate (slowly so as not to disrupt a good thing I've got going here) to try and elevate my estrogen levels to prevent bone loss naturally.

But, as always, just trusting my body will get things in gear on it's own with God's healing hand.

Endocrinologist and EA Oh My!

April 22, 2015

WELCOME TO MY 100TH POST!!!

Well, shortly after I hit "post" the other day, my endocrinologist's office called to schedule me for a next day appointment. Um, either that is crazy efficient or I should be worried, right??

Well, after my appointment, I decided, they are just super efficient. I will be honest, I braced myself to go in there and fight a battle for not medicating and being pushed to take pharmaceuticals. Thankfully, my doctor was extremely like minded. Her philosophy is there are great meds on the market, yes; however they should be used with caution, sparingly and appropriately. When I'm 65, then is the time to start meds for osteoporosis. Now, she felt it was unethical because there have not been long term studies done with these medications. 5 years. Sure. 10 years. Maybe, but even then she prescribes her patients to rotate on then off the medications.

If you remember, about a year ago I spoke about a condition I have called hemochromatosis. Bascially, what it is, is my body holds on to iron. I have too much. She said that this could be exacerbating my bone loss. If iron is being "caught" by my pituitary gland, it could be disrupting endocrine function (my hormones) and basically leaching calcium.

I have a lot of strikes against me in the bone health department. My mom was diagnosed with osteoporosis at 48 which is super young. I'm slender (higher bmi equals less risk of bone loss) at 103 lbs. I have small bones to start with. With POF I have estrogen deficiency. If my thyroid or pituitary is having issues that will compound the issue.

So, I have to hand it to her, she ordered 25 blood tests. Count them. 25! After today we should really know all my hormone levels. I won't even bother type them here. I took a photo of the lab order.

In addition to all these labs she ordered a 24 hour urine collection kit. She's checking for calcium in my urine. If there is, it could be a kidney issue where they just excrete all the calcium versus my body absorbing it.

Good news is, if there is a reason for bone loss other than the above mentioned, she's being very thorough to catch it and correct it. I asked if the hemochromatosis or an underlying issue could be causing POF. Although she said she's not a reproductive endocrinologist, she doesn't believe so. She feels that my elevated FSH indicates I have no eggs.

I think we all know I think that is, well, BS, but I let it slide. I did say the fertility specialist I met with said it could absolutely be an endocrine or hormonal disruption preventing the eggs from being recruited. She kind of shrugged it off saying she can't help me conceive, but can fix my underlying issues.

My book. Score. I'm of firm mind a healthy body is a healthy body inside and out (and all around.)

My score was, I believe she said -2.4. She said it's not fair to say I have osteoporosis because it's diagnosed on a bell curve according to age. I can't be compared to those in my age. The only certain thing is I have osteopenia, which means lower bone density than what I should.

She did say I should really consider HRT unless I have a family history of breast cancer. Um, my maternal grandma and aunt had it and mom has already had numerous biopsies...yeah, I'd really like to pass. She said once we rule out all other causes, and if I'm left with estrogen deficiency alone to think it over. She DID say she'd support me treating holistically with herbs, supplements and EOs under her monitoring for a couple years. If still in two years I'm losing bone mass, she'd ask I revisit HRT again. Ok, two years out, I'll agree to consider it ;)

When I got to the lab this morning - I had to have the blood draw between 8 and 9 am, the woman checking me in said "Holy Granola! You have a LOT of labs here. Are you ok with all these?"

Well, yeah, stick me once. I'm not paying a $40 copay for each visit thank you very much. She grabbed my urine collector kit which was a sterile container to collect urine and an orange tub 3000 ml (101.44 oz.) Um, give me two or three. She looked at me blank faced like I was crazy. "It's only 24 hrs."

"Yeah, give me several." She gave me two. Full disclosure, I got home at 8:30 am. It's 1:21 pm here and I already have the first full to the 2600 ml mark. I drink a lot of water. I knew this about myself. No one believes me. I'm thinking the last eight hours or so I'm sleeping so I think it'll be enough...either that or I'll be seriously limiting my intake this evening.

She scheduled a phone consult with me in two weeks, on May 4 at noon to go over the results. My labs post immediately as entered online, so unfortunately, that leaves me way way way too much time to consult Dr. Google. Be honest, you all know him/her too.

As a result of my post the other day on Facebook, a woman approached us about EA. Her requirement is we have at least two children with her embryos. If blessed with twins straight out of the gate, awesome. But, our hesitation is if the first FET doesn't work, or if we only get one child, we would have to do it again. Which, well, it's expensive. We had a lovely correspondence, but I told her we needed some time to pray about it. In the mean time if she found a home for them, I understood, but we'd chat with her soon. If it's God's will I know they'll still be there if we decide on them.

(EDIT - after I published this, the phone rang and it was our fertility clinic. They decided if we find outside embryos they will waive the $3000 administrative fee. What??? I'm stunned. The clinic was thrilled to hear about the 6 day blasts and the excellent quality. I also found out from the woman that offered her embryos that her grandparents lived in the town my husband grew up in. Spooky coincidence. We still have to prayerfully consider this option because her only request is we have bio siblings from her set as long as embryos remain. The good news either way, if we wait, the fee is waived so we can pursue outside embryos now without that looming over us. The clinic also told me they may have an in house match available pending donor final approval. I'm a bit overwhelmed things are happening so quickly and I'm not sure we are ready to move forward yet. Many prayers and conversations for my husband and I...)

Our pastor from church, whom I spoke with his wife on Sunday about a referral for fost adopt, actually called yesterday and had written a glowing letter for us already. Incredible how quickly people offer help. He said he'd be more than happy to counsel us through the process and also with any emotions or issues that arose. He too has adopted within the foster system, older children, and has helped some people within the church as well.

So much is happening so quickly.

Well, I'm sure we'll chat before my results are all in so I can agonize over them, but for the time being, stay strong. Even with all the headway on EA and fost adopt (look at me getting all the lingo right, it's not foster to adopt, but fost adopt) my husband and I were chatting on the phone while I drove to my blood draw today. He said he was praying and he's is at utter peace for natural conception. And, you know what. I feel at peace with it too. I'll be thrilled either way however our child comes, but there's peace there.

God's in control. Always is.

God Bless.

Coming Out Aftermath and Bone Scan Results

April 20, 2015

Well, yesterday morning around 8 am I hit post. I was nervous what the outcome would be but tried to go on with my day. I glanced at Facebook quickly before leaving for church and was astounded at how many people had already responded. After church, more and more people. More and more private messages of people dealing with or having had dealt with their own struggles. Now, less than 24 hrs after hitting post, 173 people liked the status, 63 people have commented and I've received 12 messages, many of whom shared their own stories. To say this is a disease that does not resonate with people...well, that is inaccurate, plain and simple.

I feel like a weight has been lifted. I do feel freer, and although I know my feelings and physical issues won't disappear overnight, I've a support system. People offered such words of encouragement and hope, people shared openly their own struggles and miracles. It was a very humbling experience.

Now, in regards to my bone scan, my spine does show thinning of the bone. How much, I don't know yet. My doctor has referred me to an endocrinologist, instructed me to get at least 1500 mg of calcium and 1000 international units of Vitamin D a day and to increase my weight bearing exercises. Dr. Google, who I know I SHOULD avoid at all costs leads me to think I have osteopenia...at least I hope it isn't as severe as osteoporosis.

Do yourself a favor...don't google it. It's rather scary. A spine collapsing when you turn over in bed. Good grief. It DOES make me want to listen to my chiropractor who on my last visit was really harping on the need for him to do an xray. I was kind of brushing him off because I don't have money, but maybe he can incorporate treatment for this.

I'll keep you posted on my endocrinologist visit. I know they don't specialize in reproductive endocrinology, but maybe they have some tips or know how for POF. Can't hurt to ask, right?

In the mean time, I did look up a site that offers holistic methods for increasing bone strength and reducing bone loss. Check it out here. It talks about several herbs that can be used so I'll talk this over with my TCM on the next visit to see if they can add some of these into my mix. This site also stressed the importance of balance and coordination exercises to prevent falls that cause fractures in the first place so makes me want to be more proactive about setting aside time for yoga and pilates and like I spoke about in a past blog, I need to be more vigilant to set aside time to do cardio exercise and weight bearing exercise. The good thing is, I've already cut caffiene and alcohol (aside from an occasional drink) out and I've never smoked.

I am going to talk to my doctor about using NTX testing which is not an xray but a blood draw that shows the current absorption rate of your bones. I also need to speak with the endocrinologist about a few more hormonal levels.

I've been concentrating on my estradiol and FSH, but for bone health, I need to be looking at testosterone, progesterone, DHEA, IGF-1, D3 in addition to the estraiol. He has a good chart for telling the ideal numbers. I know I've touched on DHEA on the past and said I wasn't comfortable taking it, but that was not knowing my DHEA numbers and not being monitored. Under an endocrinologist care, I'm open to discussing supplementing that with him or her.

Who would've thunk I'd be dealing with osteopenia / osteoporosis talk as a 35 year old woman, right? Isn't this an old lady disease? Then again, never thought I'd be told I was menopausal before my 35th birthday.

Like I say with the POF diagnosis. No thanks. I'll use this information to make smart choices going forward and trust with knowledge brings power to change my situation.

God bless.