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Author Topic: I am really desperate for help!  (Read 18403 times)

DEETLE

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I am really desperate for help!
« on: April 20, 2016, 06:38:00 PM »

I have now been to 3 doctors now and NO help as of yet... In fact, their difference of opinions has caused me more confusion.

Im almost 50.  My symptoms hit severe and fast 4 months ago and are getting worse.  Hot flashes, joint pain, migraines daily, etc, etc.   
My obgyn told me to just take a few pumps of ESTROGel 0.06% "whenever" im feeling a hot flash..
My GP told me he just wants me to take "progesterone only" everyday, and that estrogen is dangerous
went for a 3rd opinion and they want to do pellets under the skin of testerone and estrogen only but no progesterone
Really don't know which one to follow or believe and I would prefer the creams... 

So I finally found this forum and after reading all your stories... I realize NONE of these options are accurate or smart..  So I had my blood drawn and here are my results.  PLEASE PLEASE someone take me by the hand and guide me in the right direction.  I feel kinda hopeless right now as to how to do this and the symptoms are debilitating me..   

my progesterone was 4.90  (took this test 3 days before period started)

Progesterone Reference Ranges
follicular              0.15 to     1.40
luteal                  3.34 to   25.56
mid luteal            4.44 to   28.03
postmenopausal    0.00  to   0.73


my estradiol was   117  (FYI i was taking 1/2 pump of estrogel for 2 days before this test, not sure if that was enough to show up in my blood)

reference range   0  to  357

Can anyone explain these to me?   thanks so much
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Mary G

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Re: I am really desperate for help!
« Reply #1 on: April 20, 2016, 07:05:01 PM »

Sorry you are having such a terrible time and not getting any help. 

From what you have said, it sounds like you must be in the US.  You have had very bad advice and that doctor who told you to take progesterone everyday and that oestrogen is dangerous hasn't got a clue and is frighteningly out of date.

If you were in the UK I would recommend you visit Professor John Studd but have you got a similar specialist of that calibre who you could consult?  Take a look of Professor Studd's website to get some ideas and try to find someone similar. 

You mention migraines and I do know that in my case, these are only caused by synthetic progesterone in conjunction with low levels of oestrogen so that might be the same for you.  You are doing the right thing by taking the Oestrogel everyday but that sounds like a low reading for that amount of gel - is that pg/mL or pmol/L?  Even if it is pmol/L it is way too low but even if it is pg/mL, that might not be high enough to keep your symptoms away and I can tell you that I need more than that to keep my migraines away, particularly while taking the Utrogestan (micronised progesterone).

If you get really stuck and don't have any luck finding a specialist near to where you live, you could phone Professor Studd in London and ask his secretary if you can have a telephone consultation.  I don't think this is something he normally does but under the circumstances and as you are having such a difficult time, he might agree to it.  It would cost you about £300 but it would be worth it. 

I hope that helps but do come back with more questions if you need to. 
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CLKD

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Re: I am really desperate for help!
« Reply #2 on: April 20, 2016, 07:07:30 PM »

If you are State-side Prof Studd may know of Consultants in this field who could help you.  Might be worth while sending an e-mail to his Secretary and ask the question.

Think of the hormones that we live with from puberty and how they 'work', i.e. when oestrogen is dominant and at which stage progesterone kicks in each month.  Then you will know when to take HRT if that is what you want to do.
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DEETLE

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Re: I am really desperate for help!
« Reply #3 on: April 20, 2016, 08:13:04 PM »

thank you both... does anyone have the phone number or email for Prof Studd??  I really need to talk to someone who can guide me..   

Mary-  This is what my bottle says   (ESTROGel 0.06%  one pump delivers 1.25 g of gel that contains 0.75 mg estradiol)  so do I need to take more of this??      Also, my progesterone cream was compounded so Im pretty sure it is bioidentical (its call PROGEST VSB 10MG/ML in a versabase) 

It may take me a few weeks to get answers so is there any basic guidelines that I can at least follow on taking "how much" of both creams for now until I get some further direction..    Please keep the information coming as I really need to understand this as much as I can..  I have spent the day calling doctor offices and haven't found anyone who is educated in these bioidentical hormones, so Im feeling a bit hopeless.
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CLKD

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Re: I am really desperate for help!
« Reply #4 on: April 20, 2016, 08:52:30 PM »

If you do a 'search' i.e. GOOGLE for Professor Studd, UK you should get to information.
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Mary G

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Re: I am really desperate for help!
« Reply #5 on: April 20, 2016, 10:48:33 PM »

Professor Studd's phone number is (00 44) 207 486 0497.

The gel sounds like the same stuff as I use so I would suggest you use 3 pumps everyday until you start to feel normal again and then you could reduce the dose to 2 pumps if you like.  Re the progesterone, I'm not sure because we don't have that type over here but it sounds like it is 10mg which is a low dose so I would say use it for about 2 weeks and then you should get a bleed shortly afterwards.  I am only guessing on the progesterone though and I would recommend you run that past Professor Studd but it is probably bio identical. 

Professor Studd usually prescribe 2-3 pumps of gel everyday, 100mg Utrogestan (vaginally) for 7 days every month and a small bead of testosterone. 

What are you currently taking and when did you last have a period?  Are you using both the gel and the progesterone everyday at the moment on a continous combined regime?  I would suggest you move to a cyclical regime and not use the progesterone everyday - always use the Oestrogel everyday though.  It will mean having periods again but you would feel better overall and it will help with the migraines.  I also think that the Oestrogel works much better when it is not being permanently supressed by progesterone. 

I would stick with gel only for a while to get the feel good factor and then start the progesterone after a few weeks.  If you are currently taking both, stop the progesterone immediately but continue with the gel everyday, you will probably have a period and then after a few weeks, start the progesterone and take it for a couple of weeks.  I hope that makes sense.

What a nightmare.  Do come back with more questions if you need to.


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Lizab

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Re: I am really desperate for help!
« Reply #6 on: April 20, 2016, 11:32:13 PM »

Who did your consult and testing for the bioidenticals? I would contact the compounding pharmacy and ask about it. The compounding pharmacy that does bio identicals in my town includes consults and support as part of the fee when they test and prescribe, then you only pay for your hormones separately. But here a nurse within the pharmacy handles all of that. They really should give you more guidance.

I do understand your frustration though. A midwife in my gynecologist group was very vague with me, told me to buy progesterone cream and estrogen spray at a health food market, and wasn't clear on how much to apply. I did not follow her advice, because I didn't understand well, stuck it out for another year, then went to my gp and was given estrogen patches and progesterone pills, thank heavens. Of course, in the meantime I had researched on here and basically told my gp what I wanted, but I do feel better doing it under his guidance.

Edit: I just saw your other post. So of your 3 choices from 3 doctors, you've chosen estrogen and separate progesterone cream? Good choice, I think. You said you felt like your gp was giving a standard answer and not tailoring for your needs, let me see if I can reassure you. They have to start somewhere. It really is a guessing game, and looking at your specific hormone levels doesn't necessarily tell what dosage you're going to feel best on. Some women feel fine with a given blood estrogen level, while others need double or triple that level in there blood. Everyone is different. The idea is to take the lowest dose of estrogen that helps you, and the progesterone is used to protect your uterus from overgrowth of the endometrium. They need to start with a low standard dose and see how you react. If it fixes everything, great! If not, you'll be able to say, for example, that nothing has changed, or that you feel good during certain times and terrible others, or that you're having irregular bleeding, headaches, whatever may pop up. From there, things can be tailored to your needs.  The separate estrogen and progesterone creams lend themselves to adusting very easily, as your can use more or less as needed. BUT, don't go changing it up daily or you may find yourself in a real mess. Start with a minimal amount (Mary G will have to help you here, I don't know the gels) and if after several weeks you're not well, you could try more. I believe the progesterone would need adjusting based on spotting or bleeding problems, but you really need to talk to your prescriber about that. I don't think there are many(any) on the forum that use compounded progesterone cream.

Sorry for the novel!
« Last Edit: April 20, 2016, 11:51:32 PM by Lizab »
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DEETLE

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Re: I am really desperate for help!
« Reply #7 on: April 21, 2016, 01:58:40 AM »

Mary - I cannot thank you enough for being so detailed in your message..  I have been feeling so lost and I feel like I now have direction.   Unfortunately I cannot call Prof Studd from the USA..  I have tried several times tonight (i realize they aren't open) but it keeps telling me "call cannot be connected"  ??

the doctors that I saw said that my estrogen levels were normal??  is that not true?  (of course they also said estrogen is dangerous)  what would normal look like??  Im assuming that you suggested 3 pumps because you think I need to get the levels up??  I definitely know I have symptoms, but don't know what symptoms are from low estrogen or low progesterone?  how does one tell the difference?  I really want to learn.

Lizab - My obgyn and then my normal doctor both "talked" to me about HRT but I wouldn't consider it a consult.  I had to force my doctor to run blood work..  Im learning they must not be educated enough on hormones.    I wish my compounding pharmacy would do a consult but they just dispense the medicines.  I am so glad I found this website so that I can try to educate myself.  I cannot believe what misguided information I have been given from my doctors.  I like your idea to start low and then see where I am at before I increase dosage.   How long should I wait before I consider upping the dose?

Mary-  ^^  see above.  Is 3 pumps a small starting dose?  should I start smaller to begin with?  I have always reacted poorly to any pharmaeutical. 

Lisab - What do you mean there aren't many that use a compounded progesterone cream?  Is there something else I should be using?

THANK YOU SO MUCH LADIES FOR HELPING ME.. 
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Lizab

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Re: I am really desperate for help!
« Reply #8 on: April 21, 2016, 02:33:49 AM »

I could be mistaken, but I don't think compounded progesterone creams are popular in UK, where most of the ladies on this site are.

There are other options for your progesterone. There are synthetic progestins, like you would find in birth control pills, patches that have a combination of estrogen and progestin, and most hrt pills. There is also Prometrium, which is bioidentical progesterone in a pill form that can be taken orally or vaginally like a suppository. Here on this site you'll see it under it's UK name, Utrogestan. I don't think compounded progesterone is a bad thing, it's just not common among the ladies on this forum, so it will be difficult for them to advise you in its use.

You can also use different forms of estrogen, either pills, or transdermal through patches or gel. The gel is well-liked among the ladies here.

Each person reacts differently to the different forms of hrt, so while one of us may feel awful with patches and brilliant with pills, another may have the opposite experience. That is another way to "tailor" hrt, just changing the route of delivery.

I believe the consensus is that you should be able to feel a difference after a month on. However, it could take 3 to 6 months to get the full benefits. Some ladies report feeling better within just a few days. I was very up and down for the first month, then settled a bit the next two months but determined I needed to try a little higher dose. I'm 3 week in on my higher dose and definitely feel better, though still not 100 percent problem free.

How are you using your progesterone? In cycles to bring on a monthly period? Had you been period free for a year and will take it continously to not bring on periods? Personally, I am taking mine in cycles, and my doctor wanted me to follow up with him after one cycle, at which point he really only asked if the progeterone did bring on a period and if I had any negative side effects such as irregular bleeding, headaches, etc. When all was well then, he asked that I follow up at the end of three months to see if we needed to change anything or continue on the original dose.

Have you looked at the information under the tabs up top? Goodness, I don't see them from my mobile. Maybe it's not on the forum page but on the menopause matters home page. There is a tab there that has info about the different hrt preparations. In fact, poke around and there is a lot of info on menopause in general.

I do hope that helps. It's a lot to take in.
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DEETLE

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Re: I am really desperate for help!
« Reply #9 on: April 21, 2016, 03:23:59 AM »

Lizab - yes Im trying to read as much as I can here..  I am going to try and get the vaginal progesterone then.. sounds like thats the one most everyone here is using and truly I trust you ladies here more than my doctor right now....    I am told that estrogen can cause anxiety?  is that accurate?  because one of my most horrific symptoms is panic/anxiety (never had this before now)  I certainly do NOT want to make more anxiety by taking estrogen.  My doctors said to use the progesterone "whenever"  so Im thinking to cycle mine like I've read here for 7 or 14 days per month... BUT if the estrogen causes anxiety then maybe I should use it daily?? 

also, curious how did you decide how much estrogen to use?  was it your blood test results or just starting low and increasing?
« Last Edit: April 21, 2016, 03:25:57 AM by DEETLE »
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Lizab

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Re: I am really desperate for help!
« Reply #10 on: April 21, 2016, 04:59:32 AM »

That's the tricky part. Too much estrogen can cause jitters, but estrogen can also ease anxiety brought on by hormone imbalance. You really need to know what kind of dose your progesterone is to know how to take it. For example, I take 200mg Prometrium nightly for 10 days each month and that brings on a period. Some take that dose 12 or 14 days. Those that take it continuously are probably taking 100mg. You need to have been without a period for a year or have been on hrt with periods for I think a year, gosh I'm not sure, before you should do continuous progesterone. Actually, you really should contact your doctor and ask for specific instructions in regards to that, as it's important if you still have your uterus that you get the progesterone right. If they are vague about it, it may be because there is some flexibility in how to take it, but don't be afraid to demand specifics. Ask again and rephrase your question to ask again if you still aren't clear on what to do.

I use an estradiol patch. The one I use is available in dose increments of .25, .375, .50, .75, and 1.0 (I think, not positive). I started on .375. When that didn't provide enough relief, I was incresed to .50. I never had my estrogen and progesterone levels checked, only my FSH and that only because I'm very young for menopause. Generally, if you are in the appropriate age range for menopause, they can diagnose and treat based on symptoms and bleeding patterns without the need for hormone tests. In the perimenopause, the time leading up to your final period, your hormone levels can fluctuate, so what your tests say this month may be completely different than what they would show next month or 2 months ago. For the compounded hormones, obviously they have to test to make a custom dose for you, but I don't know how that works.
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Clovie

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Re: I am really desperate for help!
« Reply #11 on: April 21, 2016, 09:04:03 AM »

Deetle, just wanted to say that it's downright shocking and scary how you've been misinformed by THREE doctors!!  :cuss:

You are getting good advice on this thread, and yes, I would trust this forum more than I would trust any of those doctors - and there are some VERY well informed ladies on here!  :great:

I think it's generally seen to be best and safest to use bio-identical hormones if you possibly can.
For example, I use Estrogel and Utrogestan which are both bio-identical. They work very well indeed for me  :great:

It can all be a bit 'trial and error' to start with but you'll get there.

Good luck!  :)
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Mary G

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Re: I am really desperate for help!
« Reply #12 on: April 21, 2016, 12:32:57 PM »

DEETLE, keep trying Professor Studd's office, you were probably ringing out of hours.  I have just called his office but the answerphone is on because they are at lunch.  He has patients from all over the world so he can't have blocked overseas calls.

Regarding the amount of oestrogen to take, my advice is this.  You are clearly not feeling good now so I would split the dose by 12 hours to keep the levels levels up.  This is difficult to do on 3 pumps a day but try to do 2 pumps in the morning and 1 pump at night.  Alternatively, you could try 1 pump in the morning and 1 pump in the evening. 

We are all different and we all need very different amounts of oestrogen to feel good and I have never had the jitters or felt bad on high doses but I do not feel at all good on low doses.  You really need to find your ideal oestrogen dose and you will only do this by trial and error.  I would urge you to carry on with the gel because it is very flexible, you can adjust the dose and I think it is the most effective form of oestrogen on the market. 

By the way, are you progesterone intolerant?  I imagine Prometrium is similar to Utrogestan and you might want to try it but you could buy Utrogestan online if you prefer.  I would recommend you use it vaginally and the lower dose of 100mg rather than 200mg.

Hope that helps for now.  Keep trying Professor Studd's office!
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DEETLE

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Re: I am really desperate for help!
« Reply #13 on: April 21, 2016, 01:16:40 PM »

CLOVIE - how much of the estrogel and utrogestan do you use daily?  I realize we are all different but just trying to get a feel for what others use?

Mary- I tried Prof Studd again and cannot get thru...  just says call cannot be connected?   How do I know if I am progesterone intolerant?  what does that even mean??   where can I buy Utrogestan online??    thank you for this help

Lizab-  can you describe "When that didn't provide enough relief, I was incresed to .50."  how did you know it didn't provide relief?  Im assuming you still had symptoms, what were your symptoms? 

EVERYONE-  I barely slept but woke to hot flash/heart palps and anxiety???  very scary..  Please tell me what these are from?  they are not easy to understand..    I am really scared of this anxiety feeling..   please help me understand it..  is it from too little or too much estrogel??   thank you all
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Clovie

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Re: I am really desperate for help!
« Reply #14 on: April 21, 2016, 01:37:17 PM »

Deetle, as you say we are all different but since you asked I'm happy to say what works for me  :)

I use 3 pumps of Estrogel per day (I WAS on tablets of 2mg oestrogen but found that wasn't enough oestrogen to keep me sane!  :D) After upping to 3 pumps and using gel instead of tablets I feel sooooo good!   :)

And I use utrogestan 200mg orally 10 days every 2 months. In an ideal world you'd use the progesterone every month. The progesterone opposes the oestrogen you've been taking and causes you to shed your lining. (Apologies if you know all this!  :) )

I am progesterone intolerant too. There's quite a few of us on here, I guess its because a lot of ladies who have been prog intolerant all their lives need to come on forums like this as they aren't breezing through meno like some lucky ladies do! Not all ladies on here are prog intolerant though - some ladies who aren't also need support from this lovely board.

What is prog intolerance? If you have suffered from post natal depression or have had pre menstrual tension in the past you are more likely to be prog intolerant. It means you are particularly sensitive to progesterone in your body, and at times such as after a birth and coming up to a period you feel the effects. Effects are in brief mostly (for me anyway!) mood problems, sadness, despair, paranoia, irritability, insomnia, anxiety - all goodies like that!  ;D
And the reason prog intolerant ladies tend to end up on here is that the synthetic progesterones they are often given as part of HRT send them into these horrible moods.
Prog intolerant ladies often, through this board in a lot of cases - Me!! - eventually get put onto utrogestan for the prog element, which is much kinder on the system. Not perfect - but better.

I do hope you get sorted!!  :)
I have never suffered anxiety or jitteriness from too much oestrogen, on the contrary my anxiety was relieved massively by using MORE oestrogen when I went onto 3 pumps of the gel. I started to feel much better after only about a week. This is all my personal experience of course, and as you say we are all different, and I'm not a doctor.  :)


Keep posting for support or to ask questions, there are some lovely more knowledgeable ladies on here than me, who may come on to add to my brief description of prog intolerance.  :)

Good luck!  :)
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