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With all this information what should I do? Stick with the estriol? Add prog? What ratio?

Bear in mind WE AREN'T DOCTORS so better pass all these info to your endocrinologist and neurologist and they'll give you correct answers and point you to the right way!
IMHO
Dim

Dignan

Thanks-- I really appreciate your comment. I’m with you in wishing more neuros had a lot of expertise in this area. They just might help assure people with MS were “hormone healthy” while we wait for all the research/clinical trials, etc.

DIM

I ‘m thrilled to have someone else on the board who knows about the hormone/MS research. I’ve often felt like a lone ranger . I’m so glad you made the extra effort to post all that info. Thank you--I’d forgotten about the Kim research at UCLA. The abstract doesn’t mention the progesterone dose so hard to know if it was supra-physiological as well. Posting the info about hormones as you did makes an excellent case for the need to balance hormone levels.

And you definitely said it all:

most imprtant is to have all hormones balanced rather supplement them!

From the link about hormones and infertility it looks like they will test your wife’s testosterone levels--from the MS perspective I’d be sure they do. If you're interested you can try googling "Decreased serum testosterone levels in MS" (my link didn't work). It's a hard to read slide of a poster session from an AAN Conference.

Dg980

I agree with DIM, this really needs to be pursued with your neuro and endocrinologist. Best of luck when you do.

Sharon

Got my mri results. Disease still active. We are going to give the Copaxone 3 more months and see what another MRI says. I am also going to recommend that the estriol be bumped up to 8 ml. Also, in the ucla study and current estriol/copax study they are using 8ml estriol and .07 of progesterone. I talked to the research assistant at ucla and he gave me this information.

My gyn wants me to balance the estriol with progesterone. She asked what type was used in the UCLA study and I did not know. She said their are several types of progesterone. What type are you all using and why?

Hi dg

I don't know what kind of progesterone they used in the UCLA trial either.

I take "bio-identical" progesterone that is compounded, in two forms, capsule and cream. I had no progesterone when I had my hormone levels tested, 300 mg of progesterone (3x day in 100 mg capsules) barely moved my progesterone levels off zero, so progesterone cream was also prescribed, and that did the trick.

Personally I approach MS from a "neuroprotective" perspective since I'm of the opinion they don't exactly know how or what's killing our neurons, axons and myelin.

I posted some info about the lack of neuroprotection with a popular "progestin" (MPA) used in the U.S. in this thread. Short story--MPA doesn't appear to offer neuroprotection that might be important to people with MS.

I think Prometrium is a "bio-identical" formulation of progesterone that isn't compounded, but I don't know if you can get it in doses other than 100 mg. should you need more than that to balance the "estriol".

The form of "progestin" they are using in a clinical trial in Europe is nomegestrol acetate. I've read some of the researcher's rationale for choosing that form of progesterone for the trial and they readily acknowledge it was something of a crap shoot deciding which form of progesterone to use for the trial.

Bottom line--I'd stick with "bio-identical". Lots of info it may be neuroprotective in ways that might matter to people with MS.

Sharon

Great info Sharon thank you very much!
I guess "Utrogestan" 100mg caps (from French company Besins International) my wife takes as suggested from her gynaecologist has all these adverse effects you mention above?
What a crap...
May I ask you when you say bio-intedical you mean USP type of progesterone like this:
http://www.vitasprings.com/pro-gest-cre ... erita.html
... or Phytoestrogen?
I have read some stories about synthetic and "natural" progesterone where the second only did some difference for MSers, if you read in www.msrc.co.uk there is another similar story!

DIM

Unfortunately I have no idea if "Utrogestan" would have the same negative effects as MPA. Although I do know that several years ago fertility specialists in the US would only use "bio-identical" progesterone.

There might be some useful info in this article (I haven't tried to read it yet): Progesterone receptors: form and function in brain

Emerging data indicate that progesterone has multiple non-reproductive functions in the central nervous system to regulate cognition, mood, inflammation, mitochondrial function, neurogenesis and regeneration, myelination and recovery from traumatic brain injury.

Yes, by "bio-identical" I mean exactly what you linked to, although in my case it's actually compounded by the pharmacy.

Thanks for the story.

Sharon

Now I am confused Sharon, according to http://www.thorne.com/altmedrev/.fulltext/11/3/208.pdf Utrogestan is micronized progesteron thus belongs to biointedical and not synthetic hormones, what to believe?

Hi DIM

I took a look at the article and the list and I would believe that Utrogestan is bioidentical. Bio-identicals do have multiple routes of administration, including capsules, creams, gels and injections.

Undoubtedly it is confusing and it has confounded the research on hormones as well. In my case it was clear that for whatever reason(s) my body was not processing progesterone well in the micronized capsule form. When I added the progesterone cream my progesterone levels increased to a satisfactory level.

Sharon

That's probably cause it passes through the liver first and metabolised there Sharon, it's known that if not all at least most MSers have liver abnormalities with elevated enzymes etc, my wife has also high ALT/AST and currently takes milk thistle along with dandelion and other herbs for this!
Today she probably stops it but since started the progesterone I could say feels worse rather better which means it adversely affects her situation, although in her last blood test all hormones where in normal levels except DHEA which where low-normal!
What time of your period is better for hormone levels test do you know?

DIM

I think you're probably right about the liver issues.

Bummer that your wife is feeling worse since starting the progesterone and if you think it's affecting her adversely it makes sense to stop. The general info I've read on hormones is that it takes a minimum of 3 months to notice changes, if any.

It's my impression low DHEA levels are fairly common in MS. And, low levels of DHEA, especially when coupled with high cortisol levels don't seem to be a good combo.
DHEA/Cortisol Ratio Info

There was a positive correlation between the EDSS score and maximum cortisol/DHEA ratio (r = 0.45; p = 0.031). As with the hypothalamic-pituitary-adrenal axis system, our results suggest a dysfunction in the DHEA secretion in patients with MS

I don't know what time in the menstrual cycle is the best time to test for hormone levels. Based only on my experience I have the impression that labs take that into account both when the sample is obtained (identifying what phase of the cycle a woman is in) and when the results are reported (different normal ranges linked to different phases of the cycle).

Take care and I hope your wife starts feeling better soon.

Sharon

Thanks Sharon, cause I am going to give her DHEA wonder how it will affect her estrogen and their ratio to progesterone, we know that what is more important is the progesterone/estrogen ratio rather each one separately and if she supplementing DHEA does she need progesterone?
Why some people say feel better with DHEA (without progesterone supp) when progesterone may metabolised to DHEA although the opposite is impossible?

DIM

I think if your wife is supplementing with DHEA that it would be wise to consider having her hormone levels tested again in about 3 months to verify that they are all still within the normal range and balanced.

DHEA can convert to both estrogen and testosterone and in addition to concern about balancing the estrogen and progesterone, don't forget there was a study which found high and low levels of testosterone were associated with MRI findings in women.

Sex hormones modulate brain damage in multiple sclerosis: MRI evidence

Totally speculative on my part, but I think it's possible people may feel better with DHEA (without the progesterone) because DHEA just might be a factor in the MS disease process (of course, progesterone might be too--but I think you mentioned your wife's progesterone level was within the normal range).

Some reasons for the speculation: DHEA is a powerful immune modulator, it could explain several of the "immunological" findings in MS, it protects against viruses and bacteria, including a viral encephalitis (animal studies), it could explain the neurodegeneration in MS (it opposes cortisol--I just have to put in this

an augmented plasma cortisol:DHEAS ratio, widely recognized as an unfavorable prognostic index for the risk of neurodegeneration

from this abstract), it tends to be low in people with MS and it starts to decline during prime time for a diagnosis of MS--between the ages of 20 and 40. So indeed, I do think someone with MS and a low level of DHEA just might feel better bringing their DHEA level to the normal range. The two Phase I clinical trials of DHEA for MS had positive outcomes.

Now, the links don't seem to be working on my end and I can't figure out why, but I'm giving up. If anyone wants to read the info, you can type the titles into Pub Med. The title of the abstract for the quote is "Menopausal transition: A possible risk factor for brain pathologic events". Sorry.

Take care

Sharon

I think Sharon is right to urge testing of hormone levels. I know nothing about them, but she does! I can only add what I found in my latest (June 2008) issue of InFocus, the quarterly publication of the American Autoimmune Related Diseases Association (Website: www.aarda.org ).

In the article on Graves' disease was this sentence: "The female hormone estrogen also is a potential trigger for Graves' disease; as estrogen levels increase, there is usually more immune activity."

I don't know how this can fit with low hormone levels in MS, which is supposed to be an overactive immune system. But, with frequent coexistence of autoimmune diseases, it would seem wise to monitor all hormones--the thyroid hormones TSH, T4, and T3, as well as the sex hormones. And remember: insulin is a hormone, too!