Hormonal Testing and Compounding

[KathyP]

Hi Everyone;

I had a very interesting appointment today. I met with a pharmacist that specializes in Hormonal Compounding. I don't know if any of you have heard of this. I know it is fairly new since there is, maybe, 2 known pharmacists in my area that do this.

The guys name is Matt. He sat down with my husband and I and explained the connection of all the hormones that our body produces and the effects they have on our system.

A couple of months ago I went to see my gynocologist and he suggested that I do this. So he ordered a series of blood tests, cortisol, adrenalin, estrogen, testosterone, progesterone, thyroid and insulin, etc. I also had to fill out a very detailed history questionaire. The doctor looked over the results to see if there was anything that needed immediate attention. He then sent the results on to Matt. Matt then met with me to let me know what was lacking and how it was making me feel. I was shocked when he described some symptoms I didn't even mention to him that I was having. He explained, fully, why my system is so sensitive to medications. He was describing my hormone levels and how they effect eachother and the toll they take on the body. He then told me that yes, my MVP and Dysautonomia can be either heredity or caused by a virus but the main thing is to balance as much as we can so I can feel better. After our consultation he faxed all of the recomendations to the doctor for his OK.

I am now waiting for Matt to make my compounding in a cream so I don't have to worry about the side effects like I do with pills. At first I was sure that this may be giving me a false sense of hope and was just some scam. After talking to Matt and remembering what my doctor told me I figured it was worth a try.

I am not sure how much of this my insurance is covering. I do know that they already covered my blood work. I do know that the consultation fee is $65.00. I have already paid more than that in doctor's visits because of my attacks. I am not sure how much the meds will be but if they are needed prescriptions then I am sure they will be covered since my doctor is working with the pharmacist.

I hope I am not making anyone feel like I found this mircle cure. I have yet to see if it works. After hearing everything and realizing that there may be help for me I cried all the way home. I know that there is no cure for POTS, IST, MVP or Dysautonomia. If I can balance things to make me feel better I have to go for it. I just thought I would post my info here to see if anyone here has tried or even heard of this. Heh if it can help someone else then that would be wonderful.

I will keep you informed on things as they happen. Take care.

KathyP

[LindaJoy]

Kathy, I've never heard of this, but it sounds like it may be something that's worthwhile. Yes, please keep us posted as to how you respond to your cream medication. It may be worth looking into for all of us, then, too! I hope it works for you. How wonderful that would be!!!

LindaJoy

[Gena]

Kathy,

I know these hormones can definitely play a role in our symptoms. I have MVP and dysautonomia too. I am very interested in hearing if this cream works for you. I don't think a miracle cure exists, but it would be nice if you found something that helps balance your system and keeps symptoms from flaring up too much. I think the doctors and pharmacists in my hometown would fall off their perches laughing so hard if I asked them anything about hormonal compounding. They would not have a clue!

Hope it helps. Let us know.

Gena

[Jillybeanbme]

Kathy,

I know of 2 pharmacies, 1 Family Practice physician, 2 OB/Gyn's and 1 Nurse Mid-Wife in my area that are doing the Bio-Hormone Replacement Therapy. And those are just the ones I have personally talked to through my job. I am very interested in trying it myself. From want I understand Suzanne Summers even has a book out about it. I recently had to change my birth control method due to my dysautonomia meds and I have noticed that I am a much nicer and happier person since coming off birth control pills. My migraines are triggered more by the fluctuation in my hormones through out my cycle more than anything else and from the literature they have given me it makes a lot of sense. I am always open to a more natural approach to feeling better. Who knows maybe it will help my Fibromyalgia as well.

I hope it works for you.

Jill

[KathyP]

Hi Everyone;

Thanks Jill for the feedback. My dysautonomia really got symptomatic when I went off of my estrogen last October. Now that Iam back on it I am starting to feel better, not as foggy.

I also started on the Beta-blockers around the same time so I wasn't sure what was causing what. But if I stay persistant on the same thing I will eventually even off and feel better. But one thing is for sure, I have to have my HRT (hormones). I am 39, had a hysterectomy almost 3 years ago, and was diagnosed with IST and dysautonomia in December. I hit rock bottom in January and started back on estrogen in April. So I am sure it is going to take time to get everything straight. Through what I have learned so far, estrogen plays a role in serotonin and vise-versa, as well as other hormones effect other hormones. Which is why it would stand to reason that balancing hormones would help me feel better.

I will let everyone know how things go with this compounding. I am hopeful!! If anyone has any other feedback with this I would really appreciate it! Thanks

KathyP

[Jillybeanbme]

Hey Kathy,

I got my 'Spit Kit' yesterday!! I was having lunch with my best friend and she began telling how moody, hormonal, fatigued and plain awful she was feeling. I started telling her what I knew about HRT and that I was thinking about doing it, would she like to do with me. We went to visit this incredibly knowledgeable compounding pharmacist who thoroughly explained everything. Since she and I both are still cycling, we will be spitting about every 3 days for a month to get an overall picture of the fluctuation of our various hormone levels throughout our cycle. I'm excited! I'm actually looking forward to starting my period this month so I can start spitting!

I know it won?t be a ?cure all? but I look at it as one more way to treat the symptoms and feel better. After all, isn?t that what all of us really want anyway...to just feel better.

Jill

[morgan617]

I just went to a seminar on this 2 days ago. An OB-GYN female doctor is doing this. However, she refuses to see patients on an individual basis, is telling people they are overweight because of this and won't even need to exercise to get skinny again. She has an all day "clinic" with no less than 40 women for the small sum of 1200 dollars! She then bills the insurance, which she states she won't deal with and says insurance will pay for the labs. Well, insurance will pay, but not the patient, the lab, so she is leading people to believe that they are going to save hundreds, although she is commiting insurance fraud and leading these women to believe they aren't going to be paying as much, although there are absolutely no refunds of any kind. She can not do it all in one clinic, so she has three, the cheapest being 890 dollars. This means she makes 28,000 in one day of a clinic. For only one of the clinics! When my nurse friend who works in an insurance co and I tried to pin things down, she became very evasive. My friend says her ins co is investigating her for fraud.

NOW, having said this, a lot of what she said did make sense. It is reasonable to assume we are all different and require different types of hormone therapy. My understanding is that these meds are covered, although she refused to state any of the meds she used. My problem is, do I really want someone messing with my already totally messed up adrenals? I assume they discussed, the thyroid, adrenals, ovaries, and pancreas? Insulin resistance and testosterone levels?

I think this is really cutting edge hormonal type therapy and has a lot of validation to it, but I guess I'm also saying don't get pulled in by sheisters either. If you have a good doctor, he should be willing to draw these labs and a pharmacy that does compounding, of which there are few, could put this together for you. I'm not sure why you have to "spit" that is pretty odd to me. I would think an endocrinologist could work out these formulas for you and it shouldn't be a big secret. So if you find someone like (oh man forgot who started this thread, so sorry )did, you should be able to get it figured out. For those of you who suffer due to hormone swings, it should be worth a try, but I have enough trouble with my system that I don't want certain things messed with. I will be really interested to see if it works for you. morgan

[EarthMother]

Thank you for blazing the hormonal compounding trail for us! You are a pioneer and we will all be looking forward to your updates.

Good luck in your healing journey.

EM

[KathyP]

Hi again All;

I am planning to pick up my compounding lotion this week. I hope it isn't anything too complicated. I haven't been given a bill yet, but I am sure I will pay something when I pick it up. I will let you know what the cost is like.

I haven't had to do any "spit tests". My GYN just ordered lab work and then sent the results on to the compounding pharmacist. I have seen where there are some big box pharmacies that are starting to do this also. One can be found in any phone book.

I don't know if I would have done this if I didn't have a hysterectomy, but my IST, MVP/Dysautonomia symptoms have become considerably worse since then. I do know that all hormones work in conjunction with eachother so I will see if there is a difference or not. I am sure if my hormones are well balanced then it would be safe to believe that my nervous system should follow suit. What works for one may not work for someone else. But, it never hurts to try.

Morgan; I only get info from my doctors. Both my GYN and my Internist know the pharmacist that does this and highly recommend him. I am a very skeptical person. I couldn't see myself going to doctors I don't know or my own docs won't recommend and that require that much money. Sounds like a big scam to me. Sounds like she is one of those old snake oil salesman from frontier times, out for just the money. I hope you and your friend are able to nail her to the wall. I can't stand people like that who try to profit off of other peoples suffering.

I think it is important to keep with what your own doctor recommends. I have good doctors that I have alot of faith in. I am also the type of person who researches everything before I try something new. Sorry, I stay way from seminars. To me seminar is just another name for "look what I have to sell". Take care. I will write here again soon.

KathyP

[Ling]

I have just ordered a book called The Hormone Connection. I can?t wait to read it. It talks about how hormones can affect our lives. When I read the pamphlet it was as if they were talking about all my problems. The pain, tiredness even my endometriosis and fertility is in this one book. It basically connects hormones to everything and I am very excited to read and learn more about this topic. They don?t recommend medication but healthy eating and specific foods. They say they have 3 foods that help stop Endometriosis. I would love that. Will let you know if the book is any good. The book cost R279.80 so that should be about $46.00 for you guys.

Next week I am starting Sure Slim. It is a weight less group that takes blood tests of your Thyroid, kidneys, and liver and hormone levels. No tablets just natural food to help you get everything in balance as well as loosing weight. My cousin has MS and she recommended them to me. I am excited about loosing weight. It has been 16 months since I left Florinef and I still have the weight. It?s horrible to have fat on your body when you have been underweight your whole life. I am curious to see what the blood tests have to say about my hormones and thyroid. They say hormone levels can even affect your chances of falling pregnant. A lot of women have fallen pregnant on this diet due to their hormone levels being corrected. Well let?s see. Dont worry it is a balanced healthy diet.

[Guest tearose]

It is a hard truth that having the swings of monthly hormones needed to sustain a period made my POTS much worse.

I have been using a low dose estrogen patch and a compounded testosterone creme since adjusting to surgical menopause. I feel better now than before surgery. The compounded testosterone is blended with vitamin E. I was instructed to use 1/4 tsp every other day as you begin to adjust. You will have to figure the right dose for you eventually. It will take new users about 3 weeks to begin to feel a difference and then one day you will begin to feel alive and energized again. It affects me in a couple of good ways. I have that "romantic" mood more, and I have more endurance in daily activities. I use my creme 5 times a week. It made a HUGE improvement in my quality of life adding the testosterone creme!

The worst part is remembering to use the creme just before I go to sleep since I am tired. Oh, also since testosterone is a "controlled drug" you must submit a NEW prescription every time you need a refill. Means you must constantly (once every 6 weeks) be calling for the new script.

The good news is that they have developed a testosterone patch that will be coming on the market within the next couple of years.

Also, my creme costs about $60.00, which I pay when I pick it up, but the compounding pharmacy does send in the information to my insurance company and I get some small refund. Small price to pay for a major improvement in mood and daily endurance!

Good luck!

tearose

[KathyP]

Hi All;

I went to pick up my compounding today. My total cost was: $65.00 for the one time consultation, $50.00 for the reproductive hormone cremes, and $47.00 for the Metformin and vitamin D cremes. My insurance covers what I have to get through a prescription so I will get reimbursed. It will cost me $10 to $20 per month for all of this to be refilled. I have to wait 2 weeks to call them to let them know how I am feeling and then they will add the thyroid cremes I need. This way I don't add everything at once.

So it is all through the skin so I don't get the bad side effects since my system is so sensitive right now. Hopefully it will help get my system back into balance and I will start feeling my old self again. The price isn't bad at all considering that I have paid this amount for medications that I had to stop because of side effects. And they assured me that it is all natural. It is all pre-measured.

I guess it is all in the way you look at it. I figure if my system is out of balance, the best thing for me to do is to try to balance as much as I can however I can do it. I will keep everyone up to date. Take care!!

KathyP