Need Input that I'm not going to get from Dr.

[Erica P-G]

Thanks Tex,
I've looked around on the net and all I am understanding is both hormones are higher during cycle time, is this correct?

It appears what I am doing is taking a birth control measure That didn't dawn on me until today....boy do I feel dumb. So in order to not have a cycle a person just continues to apply a patch and take a pill, but for me it sounds like that week of cycle time my body is producing enough hormones to make my MC very active. Well this is a conundrum I don't know how to approach this scientifically to help me. Do I stop taking everything for that week (and hope it doesn't give my body permission to have a cycle)??

My mom didn't take anything for her 'most annoying' duration of this process, she said she just dealt with it. I am obviously not even close to being able to be like my mom.

[tex]

I've looked around on the net and all I am understanding is both hormones are higher during cycle time, is this correct?

Yes. Both begin low, and increase. Estrogen increases much faster than progesterone. A day or 2 before ovulation, estrogen decreases sharply, while progesterone continues to increase. A couple of days after ovulation, estrogen begins to climb again, but the progesterone is way ahead of it (IOW, much higher). If an egg is not fertilized, then about 10 days after ovulation, both hormones begin to rapidly decline to minimal levels, which triggers menses.

but for me it sounds like that week of cycle time my body is producing enough hormones to make my MC very active

The progesterone level peaks approximately 5 days before it crashes to reach the minimum (the minimum occurs on the last day of the cycle). And estrogen is back up to a moderate level at that point also. IOW, both hormones are up during the last week, but the progesterone level is much higher than the estrogen level, and it reaches a maximum level about 5 days prior to the last day of the cycle.

If this maximum point in the cycle is when the MC symptoms are triggered (early in the last week of the cycle), then either high progesterone is the problem, or the elevated amounts of the combination of both hormones is the problem. If the MC symptoms are triggered later during the last week (during the last 3 or 4 days of the cycle), then the rapid decline of one or both hormones is probably triggering the symptoms.

Does that help? Assuming that HRT maintains a constant, elevated level of both estrogen and progesterone (in order to prevent cycling by preventing both hormones from crashing to minimal levels), then it seems likely that the reaction would be triggered during the early part of the last week, in response to elevated levels of both hormones (or in response to a high progesterone level). If high estrogen were the problem, then the reaction should occur just ahead of the ovulation point in the cycle, because progesterone is still relatively low at that point in the cycle, but estrogen is at it's maximum level.

Tex

[jlbattin]

Erica,

I had a hysterectomy at the age of 35 but kept my ovaries. Several years ago, I went on hormone patches for a few years, but I finally just stopped them after about 3-4 years on them as I just read too much stuff about the dangers, etc. I do ok most of the time. I've always been a pretty hot blooded person and I really never had the hot flashes that many women get. I'm thankful that I'm not having to deal with hormones also and wonder if that had something to do with bringing on my MC (of course, as I think back, I could probably account for lots of things that might have brought on my MC). Have you tried using any essential oils instead of the hormones? I have an acquaintance (I don't know her very well) that has used essential oils pretty successfully. There is one called Ylang Ylang that many have been very successful with. Endoflex is also another one that people use a lot of. There are a few others. I use essential oils for lots of things. They've made a difference for me.

[Erica P-G]

Thank you Tex,
Yes it is the beginning of the last week that I feel the worse, so it would mean that I should back off the progesterone pill during that time. I need to put this info on my moon calendar and track it a couple more months to be sure, but I feel this could be a very helpful discovery. This is just another example of why it is so hard to talk to my gyno Dr. and him able to tell me how to adjust this sort of thing because no one understands the MC connection! I feel I can even take a progesterone pill every other day and I would probably be better off too. Tex your ability to explain the most random things we ask of you on this site is sooo valuable, and appreciated.


Jari,
Thanks for the ideas of essential oils....hadn't quite thought about that aspect of 'girlie stuff'. My body mass is on the fairly low end of the BMI scale for my height and from what I have read those that are like that seem to have a harder time with the flushing and hot flashes. I'm sure we are all prone to either having it hit us or not, depending on our hormone structure and how well we are at the time. Ironically Progesterone will make Estrogen for us when we don't have enough (something else I read somewhere) if this is true then I may not require an estrogen patch and may be able to regulate my body at some point just on the progesterone. I hope someone is able to debunk this as to whether it is true or not, because it would be nice to get some control of the MC along with backing off the extra helpful hormones. Yes I want to live a nice long life, but I sure as heck don't want to get scared into it by thinking I need to have a pill and a patch to do so! Geez, so much for positive thinking being the life line of living.

[Erica P-G]

Investigative work has cropped up information on the Progesterone pill I have been taking for the last year, and the verdict I am not happy with. CVS Caremark is who I have to go thru for a yearly prescription and the only Bio pills they carry ALL have SOY in them and most are made with Bovine gelatin or Peanut Oil To say the least I am saddened by this news, I put the word into my Gyno (and as long as he has been in practice you'd think he would have had a better suggestion to me other than a synthetic progestin). I was hoping he might be able to get ahold of a sublingual progesterone but haven't heard whether it is an option yet (not sure if it is because I can't get it thru CVS or what). I know that option is available but it has to be prescribed.

My whole second half of the month of July has been ups and downs....I now have to back my diet to the basic level again because I have gotten into a flare of sorts for some reason. I am wondering if I have been healing, the gluten has been leaving (based on all the ear lesion seeping niggles that are just now starting to taper off) and my body has picked up on something else I need to remove from my diet in order to continue to keep healing. Hence why I have been focusing on my hormones and what is in them. Whether or not that tiny amount from the once daily pill is affecting me I can't tell. So that is why I need to get back to basics in the food dept. Kinda starting all over again, but not really, I have a MUCH BETTER ATTITUDE for this go around

I'm a very basic person....I don't wear makeup except chapstick and mascara, and my deodorant is either TOMS natural or I sometimes use Dove (ya it has aluminum in it, try to stay away from it as much as possible). My hand cream is Curel non fragrance. So I pretty much have been working on Diet, daily Stresses, Weather changes the usual suspect when it comes to how we feel on a daily basis with MC.

If anyone reading this has any thoughts on how to possibly live without added hormones I'm all ears I did learn that Magnesium all but stops hot flashes so that is encouraging, and I'm hoping the cyclic migraine goes along this same line so I can opt out of the Climara .05 patch too. Would really love to not have to deal with extra managing of my body at some point in this dept. The MC makes me second guess myself enough as it is.

[jlbattin]

Erica,

I am not working on the hormone piece (thank goodness.....been there, done that), but I have been tracking down gluten free and soy free lotions, shampoo, conditioners, chapstick, etc........ and MOST lotions have soy in them. Did you check the ingredients? It is often hidden. I would be suspicious because I had to give up my Aveeno lotion that I dearly love. From the Vanifree folks, I got the following reply:

These products do not contain soy: Free and Clear(TM) Hair Sprays, free and Clear Hair Styling Gel, Vanicream(TM) Skin Cream, Vanicream(TM) Lite Lotion, Vanicream(TM) Cleansing Bars, Vanicream(TM) Lip Protectant, Vaniply(TM) Ointment, RoBathol(TM) Bath Oil, Vanicream(TM) Sunscreens SPF30 and SPF50+, Diaper Rash Ointment.

I found the Vanicream Lite Lotion at Walgreens, and I actually really like it. It's not heavy or greasy.

[Erica P-G]

Thanks Jari,

We have a Walgreens here in Walla Walla I will have to check that brand out.

Erica

[Erica P-G]

Side note for anyone following this post.....

A flare can happen at any time, out of the blue, without any knowledgeable reason at all.

Procedure to getting back on track as follows:

Reach out to this wonderful forum, this is practically an invisible illness, and the people here provide the right amount of comfort, most can't get anywhere else.
Remember to go back to your basics with food (the first 2-3 safe foods you started out with), stay hydrated.
Have patience (yes it is hard)
Consider where your body is at, did it just get off track from an offending protein, stress, hormone, histamine, lack of VitD or Mag?
Get plenty of rest....listen to YOU, and no one else. Energy is worth mounds of Gold right now.
Be kind to yourself, there is still lots of life to live and Rome wasn't built in a day so this to is gonna take some time to rebuild and figure out.
Don't let anyone make you feel less of a person, just because you don't have an external physical sign of not being well doesn't mean we don't deserve empathy.
These are my opinions for incoming MCers, with hopes that MC and how it all begins gets more attention so it gets the treatment it needs and deserves.

Again, reach out to this forum, when something was working before and now it doesn't something needs to be tweaked at this point, its time to start asking questions again no matter how well you may have been.

I thought I had myself all figured out....wrong...this seems to be a continuous learning process. Sometimes it is kiddy ride and at other times it is a roller coaster!!

[tex]

Erica,

Great post! You obviously understand the disease, and how it can affect us from so many different angles.

I hope that your recovery will be back on track quickly.

Hugs,
Tex

[Gabes-Apg]

Erica

firstly - a hug.

a gabes reminder, in MC world, we cant do everything perfectly and avoid every possible trigger 100% of the time.... and still live life...

If I was in your situation, I would spend the next 8 weeks or so, focussing on some good gut healing, (bone broth, bland diet, high intake of Vit D3 etc) get the magnesium levels in your body up, and then can you considering tapering off or reducing the intake of the hormones. how much soy oil is in the product?
if you are avoiding soy totally everywhere else, then you might (and that is might) be ok with the small amount of soy in the hormone stuff. Each of us are different. I know Polly can not do a sniff of dairy, whereas i can handle small amounts of dairy.

One option that is very popular in Australia is natural hormone creams - prepared by compounding pharmacy.
natural, no additives, better absorbed. In the USA you may need to see a functional doctor to access these... and yes they are more expensive..

have you had your thyroid checked?

the current roller coaster ride you are on is semi normal, as we remove one major trigger, like Gluten and as the antibodies reduce in our system, other things become more of an issue, like Soy or Dairy.
As time goes on the roller coaster ride and its intensity gets way way less...
This is part of why I encourage people to stay on the bland diet as long as possible, while the body transitions through these phases...

the sucky part of all the options, is that it is going to take time..
hang in there... Hugs

[Erica P-G]

Thank you Tex an Gabes

I've come to the conclusion that I must have gotten a Cross-Contamination from the fryer here where I work....I backed tracked from Aug 3rd to when I started feeling bathroom trips come upon me again and during that time I had some shoestring fries and tater tots - Fried. This is the only thing I can think of that could have set me back at this time (I know gluten products have been cooked in those fryers that has to be my cause of this flare).

I'm doing better, but still have WD its predictable so at least I'm not having urgent situations (thankfully). I've come to the conclusion (and I agree with you Gabes) I need to stick with all food made by me even here at work. I need to know it is Erica Safe foods.

Since I have researched the Soy in the Progesterone pills I know there is some of that in my diet, but I am completely staying away from it everywhere else even cosmetics (which I don't wear much of anyway). I've asked my Dr. about a compound formula but he doesn't seem to want to entertain that idea for some reason, his comment was there would probably be more offending ingredients in a compound I really think I need to talk to a pharmacist on that one.

All other functioning organs and glands are working as they are supposed to including thyroid. I think my poor pancreas is putting bile in the intestine that it can't keep up with but it isn't too bad, that too waxes and wanes.

This MC stuff has a mind of its own...I can be fine one minute and not the next by just walking around or laugh to much, walking in the grocery store (huge stores), cleaning house....anything that gets the heart rate going more than idle and it sets this stuff off. My husband jokingly said we can get a port-a-potty that slides into the hitch of our truck so when we are out exploring I have a bathroom on site....LOL.

I'm in it til the end! I'm just getting tired of second guessing it right now...gonna have to take that 8 week safe food trip and hope it does the trick...I haven't yet decided to go the med way, just not convinced that's where I am yet I guess. If I was headed to the loo 10-20 times a day like I was before cutting out the offending foods I might entertain the idea but I'm not at that stage anymore.

It sure helps me to talk about this, keeps me focused and knowing I'm on the right path even if I'm not where I want to be yet.
Hugs
Erica

[tex]

I've come to the conclusion that I must have gotten a Cross-Contamination from the fryer here where I work....I backed tracked from Aug 3rd to when I started feeling bathroom trips come upon me again and during that time I had some shoestring fries and tater tots - Fried. This is the only thing I can think of that could have set me back at this time (I know gluten products have been cooked in those fryers that has to be my cause of this flare)

That could definitely do it, and if it happened more than once, that could be why the flare seems to be persisting for a while.

I've asked my Dr. about a compound formula but he doesn't seem to want to entertain that idea for some reason, his comment was there would probably be more offending ingredients in a compound Confused I really think I need to talk to a pharmacist on that one.

Say what? I wonder if he understands what compounding even means. Your doctor is the one who is confused. He can/must specify the ingredients in a compounded formulation, including the inactive ingredients, if those are important to the patient because of allergens. It sounds as though he just may not be sure how to go about it. Maybe he will do it if your pharmacist writes out the combination of ingredients that you need, so that all your doctor has to do is write the script.

Good for your husband. At least he's taking all of this in good spirits.

Hugs,
Tex

[Erica P-G]

Well now I will need to consider my options based on what Dr. Fine has reported back to me on regarding hormone use and MC. I really do not know what my body will do without the little extra supplementation (probably have more hot flushes/flashes, and am not sure about the low estrogen migraines that can come out of no where). I'm not taking a very large dose of hormones but apparently the flare of MC/LC will take a lot longer to heal due to the hormones at play, even my own natural ones that are waxing and waning. No wonder women get to a point that they just don't give a crap about what is going on around them and seem like cranky ole bitties at times, they can't stand themselves even! I will have to ponder this area of my life.

Tex, your opinion here if you have one. Do you think Progesterone is just as detrimental as the estrogen patch in regards to Dr. Fine's comment below? I am concerned about the relatively small amount of soy an bovine it has in it, but if it will help keep me a bit more sane from the hot flushes, I may toy with the idea of just letting the estrogen taper off first.

I can tell I am entering a ghost cycle week as I am having complete 6-7 bristols right now. I am obviously reacting to something and it can't be diet related because I have stuck to the same foods for a long time now. I would also think that small Frier gluten episode a couple weeks ago should still be causing this bad of a flare. Since I can predict Bristol 6-7 just about every time a ghost cycle appears I am leaning heavily towards hormones at this time in my life.


Hi Erica,

We know from clinical experience that hormone supplementation especially with estrogen, can cause and perpetuate this form of colitis, most times requiring discontinuation to allow healing.

Thank you for allowing us to serve you.

Dr Ken

--
Most sincerely,
Kathy Carreon
Customer Service
http://www.enterolab.com
972-686-6869 Phone
214-341-9522 Fax

[tex]

Hi Erica,

Of course I have to agree with Dr. Fine regarding estrogen supplementation. But also like him, I'm not so sure about progesterone's effect on MC symptoms. It's pretty clear that estrogen supplementation can have adverse effects on the digestive system, because HRT is strongly correlated with the development of IBD:

Estrogen a Culprit in Inflammatory Bowel Disease

But it's certainly not a simple issue, because it's also well known that an estrogen deficiency causes increased intestinal permeability, and as we all know, increased intestinal permeability leads to the development of food sensitivities. In fact, it's thought that a deficiency of any of these hormones can lead to leaky gut:

Thyroid hormone
Estrogen
Progesterone
Testosterone

So the question is, "Is it the balance of these hormones that is critical, or is there simply something in all HRT compounds that causes them to promote the development of IBD?" Because theoretically at least, resolving a hormone deficiency should help to prevent leaky gut, not make the condition worse. I have a hunch that the problem lies in a defect in the formulation of all HRT compounds. It's not nice to fool Mother Nature, and as we all know, all medications have defects/side effect risks, especially when they are synthetically formulated.

And of course hormonal deficiencies can lead to additional problems with which we are all familiar. So all of this is tied together with IBDs, and adds another layer of complexity.

We performed ovariectomy surgeries to induce an estrogen deficient state in female mice. As expected, micro-computed tomography demonstrated that distal femur trabecular bone volume was decreased by 26% as compared to sham control mice. Gene expression analysis of the small intestine demonstrated increased levels of pro-inflammatory cytokines (tumor necrosis factor (TNF) and interferon gamma (IFNg)) and decreased anti-inflammatory cytokines (interleukin-10 (IL-10)). Consistent with increased inflammation, estrogen depletion increased intestinal permeability.

Estrogen deficiency induced intestinal inflammation and permeability is linked with osteoporosis

So what does one do when we know that a hormonal deficiency causes the problem that we are trying to treat, and yet all of the medications available to treat the issue also cause the very problem that we are trying to treat.

Tex

[Gabes-Apg]

So what does one do when we know that a hormonal deficiency causes the problem that we are trying to treat, and yet all of the medications available to treat the issue also cause the very problem that we are trying to treat. mallet pounding head

we try to get to the root cause of that deficiency/imbalance that is causing the symptoms, via nutritional deficiencies/imbalances.....

easier said than done I know, but it is the best long term solution....

seeing the difference for HUNDREDS of people here that once they fix Vit D3 deficiency, magnesium deficiency, take the right forms of Vit B's and the improvements that come, the proof is there...