Feeling better, esp. fibro, on bioidentical hormones

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/25/2009 9:16 PM (GMT -7)   

Hi--

I haven't posted for a while as I haven't been doing very well until recently.  My alts dropped, bilirubin came up and I've been really incredibly tired and my lymphocytes are up. Anyway, probably the isoniazid I'm taking, almost done. Lots of colds and stuff going around. I'm losing fat around my ribcage, which is good but possibly a sign my liver disease is progressing.

Anyway, I had a good experience that I wanted to share with the women here who may take estrogen for any reason.  Since I have so many hormonal problems I decided to go to an MD who does bioidentical hormone therapy, which is natural hormones that are complete and identical to what we produce and not synthetic. These docs test all your hormones and properly supplement, while my endos kind of guess, and only check a few things, in my experience and don't do anything for mild but problematic deficiencies.

Anyway, I had had a great deal of pain to the touch around the rib cage. I take estrogen for hormone replacement and was told since I don't have a uterus, I don't need progesterone. This new doctor believes, based on research, that progesterone is necessary for women to properly metabolize estrogen, otherwise it can bind to other hormones, like thyroid hormones, or be stored in fat, making fat difficult to lose, or feed tumors rather than being properly metabolized and excreted from the body. And we are not getting the proper benefit from the estrogen.

So I started the natural progesterone cream and within a few days the pain around my rib cage was gone and my tissue in my breasts became soft and healthy and my fibroids disappeared--which was really frightening to me because I realized I had been on the road to breast cancer. In addition, I sleep really well and have a reduction in my fibro. I'm storing less fat, which is good for my liver and have a more satiated and content feeling, so I should eventually start losing weight slowly and properly. I gained a lot of weight after my hysterectomy, when I stopped getting progesterone, hmmm....

I normally don't see a doctor that is in any way not mainstream, but I was so fed up with the current endos that are just waiting for my adrenals to be damaged before they treat me. And the hormones they give are not complete. So I felt possibly this might help. Also due to my liver based metabolic problem they are testing lots of vitamins and are helping me to take just the vitamins I need and in low doses that won't stress  my liver. I also want to go on bioidentical thyroid treatment for my hashis rather than the synthroid, which contains only one of the hormones needed to properly replace the thyroid hormones I lack.

I feel so much better now and felt it was worth sharing for those women who might be in the same boat. The cream is nice because it doesn't pass through my digestive tract and liver and can be a low, appropriate dose that works quickly. It does appear to have been something I need and a very gentle change and my experience is not unique according to the doctor, many women are quite pleased with it. I'm also much calmer and my red face has improved some.

They also tested some vitamins and determined that I am deficient in one of the D vitamins and need mild supplementation. Also, they were able to hook me up with some low dose vitamins that are easy on the liver and test everything to know what you need. I'm quite happy so far. I can't imagine life without progesterone. I sleep like a baby now, have much less pain, and it seems practically the cure for fibro, or at least a great help in lessening it.

Hope this helps someone. I would recommend it to anyone on estrogen from hysterectomy, or even without hysterectomy.


Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/26/2009 8:43 AM (GMT -7)   

Marji - I was glad to see your post.  I have a follow up visit this week after my annual exam to talk about the results of the blood tests for hormones and vit d, etc.  The person I am seeing is a nurse practitioner - but she orders tests and prescribes meds.  She has been working with the bioidenticals for some time....and works with a pharmacy in town that compounds.  On the exam visit we talked at length about my symptoms and other problems and she gave me some information and told me it was likely my thyroid was needing help and I was deficient in some hormones.  I went through an early menopause at 40 - so it wouldn't be surprising....and every doctor I've ever been to wanted me on synthetic hormones - but I have resisted.  I'm 54 now and the AI issues are persistant and somewhat unclear. 

I have been on Plaquenil for 7 weeks now, and feel it is helping - so I'm not crazy about starting up something else that might create side effects (w/ an adjustment period) and make me wonder what might be causing what.  But!  I sure would like to feel even better and take care of things that the Plaq may not be addressing.  The fibro has surely been acting up this winter but the fatigue and malaise has improved on the Plaq.  Also my scary hair loss in the fall has slowed way down.  I'm like you - started cutting my multiple vitamin in half along w/ the calcium and seem better able to tolerate it.  I also have mild fatty liver - and hadn't thought about the hormone issue playing a role.  Anyway - it helps to hear of your experience.  I'll let you know what happens after my visit.  Really glad you are feeling better!

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/26/2009 9:01 AM (GMT -7)   
Marji,

I used the creams 8 years ago but had difficulty getting the same exact amount in the syringe every day. How do you do it? Maybe there is a better way now. I changed to compounded estrogen which worked miracles. Unfortunately, the progesterone cream turned me into a crazy ranting woman. I do think that perhaps the pharmacist that was helping me was not competent.

I'm glad this is helping you, and thanks for sharing this with us.

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/26/2009 8:11 PM (GMT -7)   
Thanks Lucy and Patty--
Patty--I was a lunatic and crying alot for about four days of usingit, I thought perhaps I got too much in. I have a pump bottle and I'm supposed to use two pumps a day. I told the nurse that it was like I was ODing on estrogen the first few days on the progesterone, maybe because I had so much extra stored up in all my fat. She just smiled and asked if it had stopped, and I said yes, because it had. I did cut back a little on the dose on my own and am easing up more to the full pump. I also wonder if it didn't get mixed up good into the cream or something, but progesterone isn't supposed to cause those effects, estrogen usually does, so it may be thatyou like me had a lot of estrogen stored up that theprogesterone sort of released to be metabolized and it was like an estrogen OD, I don't know. It is possible too. I just put on less and waited until I felt I needed it, usually by evening and then put on more. I mean, if I went years without it, I should be okay cutting it backa little until I'm used to it, I figured. Butit was roughin the beginning, but worth it now.

I still use a synthetic estradiol patch called Vivelle and the doc likes that one.

Lucy, I'm so glad the hairloss calmed down. Im really more impressed with these docs than the standard endocrinologists, they really understand how sensitive we are to changes in vitamins and hormones that standard docs wouldnt treat or even test for until thing were really bad. The plaq will even help more after a year or two, you kind of realize that you definitely notice before you take it and after and your bloodwork gets better. It has been a lifesaver for me. My hepatologists at Mayo pretty much feelthat fatty liver not from alcoholism is pretty much caused by endocrine problems that may not be perceivd as being severe enough to be treated or hereditary aytoimmune endocrine problems. The fat makes it so hard to metabolize lots of pills taken by mouth, even vitamins sometimes. Its crazy. Lots of docs think that because their patients with cirrhosis may be able to take certain meds us with fatty liver should, but our livers are not full of scar tissue but puffed up with fat. I actually get better when fibrosis (scarring) sets in because there is less swelling and drugs and stuff pass through the liver easier. But really fibrosis is worse for you because unless it heals, that part of your liver doesn't work at all. For a young woman, I'm told that hormone supplementation is pretty much agreed upon by most docs to be like needed to maintain good health--brain and bone. These people are definitely better at it than my old male ob/gyn who did my hystero. It sounds like you have the right person to help you if you make that decision. I think it was hard for me because I was on estrogen for so long with no progesterone with it. I dont know that other people would have the same problem.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/27/2009 8:06 AM (GMT -7)   
Marji, I'm glad the hormones are helping you feel better. My pcp (who is great) discovered that a lot of my hormones were really messed up and I'm on a compound testosterone cream which has helped some with my fatigue. I can definitely tell when I forget to use the cream. I'm sorry that you were so sick, but hope that you will now continue to keep feeling better. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/27/2009 7:37 PM (GMT -7)   
Thanks hippi, I am doing better!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/28/2009 4:42 PM (GMT -7)   
marji, wow!!  That is great to hear. What a testimonial!
 
I'm one of those women who can't take extra progesterone. Makes me really depressed and anxious. I found that out when I was taking the progesterone only birth control pill a few years ago.  I kept my ovaries when I had my hysterectomy. So I still produce hormones. What is neat is that I feel very even-keeled now.  Like having the hyster was the answer!
 
I'm thrilled you have found an answer to make life better and reduce your symptoms!  So very happy for you!
 
love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/28/2009 8:24 PM (GMT -7)   
Thanks, Ginny, I felt so much better after my hystero but wonder sometimes if it could have been prevented, I don't know. now I'm having hot flashes and my sugar is up a little. I don'tknow if this is related to the cream. It seems to happen when I first put it on, but IM" hoping like the mental side effects it will go away. My thyroid is down and my TPOs are normal for the first time in forever, but it probably is from the TB going away or my thyroid not being able to make TPOs anymore. It still helps the fibro, arthritis, and breasts, but haven't really lost weight. Its hard to know what is from the isoniazid finally killing the TB and what is from the cream. The hot flashes seem to be from the cream though and it is a listed side effect. I have been sweating up a storm and my face turning burning red and hot. It's awful, but only lasts a short time till I get in some AC. Igotta ask the doc about it. I hope that isn't a lupus thing. I just figure maybe I've got too high progesterone to estrogen ratio and now I'm lacking some estrogen.

HAs anyone had this experience?
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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