hi all. has anyone who had prior failed IVF, used DHEA after that and become pregnant. Im almost 40 and had a failed IVF. I've read on other forums that DHEA helps when you are aging. Any suceess stories out there please.
Some comments on your RE’s comments….
I don’t know that 3 pronuclei have anything to do with ICSI – ICSI just gets the sperm in…doesn’t control in how well the chromosomes line up to my knowledge. They do have to ‘select’ the sperm for ICSI and so usually pick the best. Maybe that’s the reason for her comment.
FSH, to my knowledge makes follies grow and is not related to quality directly for all the reading I’ve done. I’ve added more on follicle composition below to complement this comment. If FSH helped quality then adding more would make for better quality. We’ve seen people get more eggs with consecutive cycles – but not necessarily a lot more and no documentation that the quality is specifically improved as a correlation to consecutive cycles. Please correct me if you have something on this. Its just a numbers game. We did 3 consecutive cycles and got one or two more each time before DHEA, but the quality stank every time.
It bothers me when docs say or do things that haven’t a reasonably solid basis and say….”this will help with the next cycle” so you hope and go back for more. I hate to say it, but this is a business and we consumers have to be educated and protect our money.
New Approach for BW
So here’s another suggestion/approach for when you talk with your doctor. We’ve all had such poor results in converting our docs I’ve been thinking about this for a while since posting the last suggestion.
Simply say..”I’d like to test my dhea, dhea-s and testosterone along with the other bloodwork.” Don’t ask permission, and don’t ask their opinion. Just tell them it’s something you would like checked. If it becomes a discussion maybe try….”I’m really uncomfortable moving forward without having these tests.” This is kinda the approach I took with my RE and he said he didn’t believe in it but because this is a team effort he abided by my request. I didn’t really leave him an option and didn’t try to discuss it so I guess that made his pain over quickly.
Can I ask why you're RE hasn't initiated IVF? Just curious. There are lots of heavy gals doing it and if you really really want the little guy...it seems the best chance to get 'em along with the DHEA.
Just curious..and I'm rooting for you! :)
My Dr has suggested many things, IVF being one of them. But my insurance will not cover anything having to do with fertility, and I am very afraid of the costs. I don't really even know the costs of IVF or IUI, but I had a friend once that spent her entire life savings TTC, and failed.
Sometimes I wonder if the combination of my age and my weight means that I will never conceive.
Thanks for rooting for me...I need all I can get. My mother is not exactly thrilled with this decision. So it's nice to have someone on my side, well besides my DH.
Its always a conundrum and different women here have chosen different paths. At CHR via email they said they don't take women off the DHEA. I went off it before xfer before I knew that and didn't get pg. CHR's initial study commented about higher miscarriages which, at the time, I felt it was reasonable to think that was because of high testosterone levels which can cause MC. So now my camp is loading before ovulation or retrieval and pulling back to like half dose afterward. Best way to be sure is test your testosterone and make sure its in the middle of the acceptable range, especially after positive PG.
Sprinkling baby dust on you! ;)
IVF costs range between 5 - 15K for doc and drugs run between $3,500 - 5K. Some fertility clinics offer payment plans and others two cycles for a flat rate in case you don't get PG the first time. Before starting, its good to set your limits and then stick to them. Our limits have changed a little, but only when we have important new information...like DHEA. I've also seen women spend absorbitant amounts of money and its just what's important to different people. My husband and I put a value of $100K on a child when we started. It was random but it put it in perspective for us. And everyone's feelings on having their own biological child is different.
My mother didn't agree with IVF being an old school catholic and I said "Well, I can talk with you about this and share the experience which I would like very much, or I'll talk to someone else as I don't want to make you uncomfortable. Whatever you decide I will respect." She decided to put our relationship first. Its been very nice to have her support.
Another time I was in a counceling session with my DH and continually questioning my RE. Both my councelor and DH (dear hubby) kept saying the doctor has so much experience and he's nice etc. This was after 3 failed cycles and doc doing nothing different. I finally said "I'm going to figure this out and you two, if you want to be in my little red wagon, need to get on board and support me or I'll need to move on and find folks who can." The councelor did change her tune and helped me find another RE and DH is TOTALLY with me. I couldn't do it without him and I found another woman who had done like 17 cycles and is now one of my closest friends. She's a veterinarian so its great as we can talk medicine in detail. She got 1 biological child and 3 by egg donor.
If you can find another woman close to you who's done IVF.... Craig's list or any of those sorts of engines...sometimes women offer themselves through their RE as support. Just ask the RE if they have had a patient that might be willing to talk with you. You'll feel so much better with that kind of peer support. This blog is fabulous, but it doesn't hug and smile at you. ;)
At the end of the day, the most important thing for me was to feel certain that I'd done everything in my power to bring about my child. Then I'll be able to walk away without personal regrets....disappointed yes...but I think more able to move forward knowing that I tried. Its just a personal phylosophy that empowers me to make decisions and feel good about moving forward.
Please don't let your weight or anything else make you feel shy our less comfortable in persuing your dreams. BTW - my surrogate is very overweight and many surrogates are. Weight shouldn't be a significant issue I don't think.... not a blocker in the biological sense.
I really wish you all the best and hope you are successful.
We ourselves may be moving to adoption next....at the end of the day we will have our family and it will feel just right.
I knew that the costs were high. I have never seen a RE (reproduction expert?), only my GYN. She has told me that if we want to get things moving along she can refer me to a good one, right in her office, but I haven't been brave enough to take that step. I guess I am afraid of what they might tell me. If I don't get pregnant soon, I may get that referral.
As for the weight, I am told that it is more difficult for obese women to conceive and carry full term.
The thing with my mother is that she really believes that my weight is the issue with my miscarriage, and doesn't believe that we should be trying until my weight is no longer an issue. Which is not going to happen anytime soon. I told her that she can really burst a persons bubble!
My in-laws are all for us trying, and that helps out a lot!
I am really glad to find this forum. It helps to talk to other women that are going through the same things that I am. I can also read about other alternatives, and maybe bring them up to my Dr when I see her.
Thanks for the help, and good luck on whatever road you decide to take.
Thank you so much for your reply - you are a legend!!
Unfortunately I dont have a lot of the information that you are seeking (think I need to ask my Dr for some blood tests!!) I am not sure what my BT results are at the beginning of my AF - at my clinic we have bt on day 1 of AF - and I just know that they say I am baseline - I do recall having my LH at only around 7 once - but I cant find my notes where I wrote that down (I have only recently started asking for all the test results and writing them down). Apart from that my only BT's have been during stimming.
As for my natural cycle and ovulating - apart from this one currently - I havent had a natural cycle in 12 years - I was on the pill straight from age 20-32 and took the pill straight into the start of my first IVF cycle - So I have no idea what my natural cycle is actually like!! As for exercise - I used to exercise regularly but I have stopped now. I do some walking but nothing more energetic than this (I have deliberately not over exerted myself in the last few months to try and help things). I havent had any alcohol in several months and have now even started eating primarily organic fruit and veg and meats - I am lucky that my DH and I have been naturally quite healthy eaters - lots of steamed veggies etc. As for my weight - I have always been lean. I am about the heaviest I have ever been at the moment and am around 50-51kgs and am 5ft 41/2" - so I am naturally lean. Since the DHEA I have also been taking CoQ10, Elevit and folic acid daily.
As for the FSH helping with egg quality - sorry but i probably havent been clear - my Dr believes that high doses of FSH can actually affect quality negatively - for this reason she wont take me above 400u puregon daily and even believes that I would probably respond similarly on around 200u. She does however believe that having the extra FSH in your system during the 3 month period in which your eggs develop before ovulation may assist with their quality (not just during the final week before Egg Pick up) - for this reason she supports back to back cycles. Not sure if it is true at all but I am happy to have a Dr that is prepared to try new things. She has also now said that she is happy for me to add Clexane in this cycle as well - we dont know that there are any implantation problems as we have only gotten to transfer in 1 from 4 cycles - but since we seem to stumble at every hurdle, and as she said that we could do a whole lot of tests in this regard and the end result would likely just be that she would put you on Clexane, she is happy to skip the tests and just use it anyway. So now I have been back on the pill since Friday, Lucrin is due to start on 21st, stop the pill on 23rd, start oestrogen priming on first day of AF - add FSH 400u Puregon on day 8 of AF, continue oestrogen priming until first lead follicle hits 15mm ------and then fingers crossed that I get a good haul of eggs, with great quality and a BFP!!!!!
Re BT's - are there some BT's that you think I should have done now? Will it matter that I am currently on the pill?? Thanks again for all your help Anitasto - you really are a godsend
Are you in Europe? I see that you use Puregon. That is what we use in Germany. For all the Americans on this board, Puregon is the same thing as Follistim. I know this because both are produced by Oragnon and because I actually bought a refill form my Puregon Pen by buying a Follistim cartidge when I was in the U.S. visiting my parents. I self-medicated on that visit home (Yes, I know...that was bad.)
Also Hope, I just completed my third round of IVF after 3 months of DHEA and got a BFP. I did not have high FSH to begin with but did manage to increase my AFC (antral follicle count) by 1. Anyway, we will see how it goes....I am 41 years old, after all. The ultrasound is on Monday.
Antitasto, either you or Puglies asked about whether anyone said anything about the improvement of egg quality. Well, the guys at my clinic do not say much but we all get a picture of the embryos transferred. Compared to my other tries, I can tell you that the blastocysts were further developed with obvious cavities (blastocoels) in the middle. In my opinion, the best looking morphologies I have gotten so far.
I'm on DHEA and I have a problem with premature ovulation despite Lupron and lead follicles. I'm about to do an antagonist protocol in September and I want to talk to my RE about down-regulation beforehand. When do you start down-regulation with estrogen patches, how long do you do it for and what brand/dosage of the patches do you use?
Hi Emma - If you are prematurely ovulating before retrieval
1. your doc is checking LH levels all along right? They should stay below 1.4. Search previous posts for more on this - I posted a long one with link to the study
2. I used Ganirelix (there are others) to prevent premature ovulation. Make sure your doc is using something to this effect.
3. Downregulation I used 2 patches/day of Vivelle-Dot 0.1 mg patch beginning 2 after home test of LH surge (after ovulation) or on day 15 of cycle. I'd started with the pill and ovulated through it twice and more women I've collaberated with did too. Then went to 1 patch every 3 days but still had a lead folly. 2 patches/day finally kept them all at <7mm before stimming.
Premature ovulation should be checked for the day before retrieval (and I made them test the day of also even though we wouldn't have results, it would collaberate the # of embies we got or lost to PO) and can be checked by
a. progesterone level <1.7 ok and <=1.2 optimal
b. LH level 100 if you have lots of follies this is still ok - just means you ovulated one but will also likely mean that a and b are too high
We typically seemed to loose 1 egg/cycle. I don't quite know why and it was very frustrating. In my 10 egg cycle we used more Ganirelix and i think that was good...just made for a slower E2 rise.
Thanks for the plug(s)! Keeps me coming back here while I sort our my own baby to be or not debacle. Beta this week. ;)
Nice work on the organic, CoQ10 and Elevit! Great stuff! BMI is roughly what I suspected...annovulatory and low progesterone women seem to be lean and PCOS women heavier. Just a personal observation..
I'll respond to the cycle protocol etc....but...I'll just say that I'm concerned not to know what's going on with your cycles before going into IVF. It's true that IVF can overcome these things so that's good and makes sense...it just makes me nervous not to know what's going on with me so, of course, this translates to you.;) Hope you can get your records and BW to know more. Now..on from the soapbox.
If you got better quality with DHEA in last cycle then you'll likely get even better quality in this. But I'm going to make some suggestions here that are different than what your doc is doing because I think these things are going to make up for your annovulation and non-progesterone which your growing eggs need to be healthy.
FSH > 400IU I agree - not going to make a difference but there's a BIG difference between 200 and 375. The cells in your follies haveFSH receptors that pick up the FSH. The best you can do I think is have all the receptors receiving. I haven't heard of FSH >400IU in a cycle. I've always been prescribed 375 and got 400 cartridges so used the whole thing. Doc knew and didn't have any issues with it.
FSH improving quality and back to back cycles - again, I must say, I strongly disagree with this theory of FSH and there are no studies to back it up. I also disagree with back to backs. Most offices I've spoken with don't like back to backs because you've depleted your ovaries of readily available follicles and the ovaries need time to heal AND recruit more follies after they are poked for eggs. Just my opinion dear.
I think its worthwhile to press your doctor for the tests prior to taking Clexane. My doc bypasses this too BUT if you are positive it matters to what degree you're positive and such results have other health implications. You might want to check out this website on clotting disorder most commonly associated with MC and lack of implantation.
First of all....whatever you decide with this cycle upcoming I am TOTALLY rooting for you! That said....here are some things I think are important.
1. Follicles develope after ovulation and the one for the next cycle is 'selected' roughly 3 days prior to your AF when there is a small surge in FSH. Once your AF starts all your follies are there and in my cycles I found that taking Estrogen for downregulation/priming after AF started reduced my follie count...they just couldn't all hang around that long. So we've always started stims within 3 days of AF or taking off the patch.
2. Because of your special situation I would consider...
a. watching your natural cycle like a hawk for a growing follie and, because you typically start AF on CD15, take an HCG injection after your follie gets to like 115-16mm to force ovulation. (HCG is almost identical to LH, if your doc can get LH though its best for natural cycle I think because it is directly related to improved egg quality - google LH and egg quality)
b. Then test your progesterone level to see if you have any AND/OR take progesterone supplements within a day or two after HCG injection (even if you start to flow)
c. Also, 48 hours after injection or on visual confirmation via scan that you ovulated, START DOWNREGULATING WITH ESTROGEN PATCHES (pill doesn't work in my experience while on DHEA). Keep the patch on for at least 10 days.
d. take off the patch for about 3 days and start stims.
You're downregulating while the follies are coming to last stage of development and holding off early selection (you didn't seem to have a problem with lead follie but its just insurance - lead follies horde FSH. ;)) And then you're stimming while the follies are still fresh...so they're not hanging around for another 8 days.
Go get em girl! I'll be looking forward to your updates.
Angela - I am actually from Australia - just trying to keep both hemispheres represented on this forum!!
Anitasto - when is your next test date? and how are things going - you have ended up going with a surrogate havent you? and from memory you found that your embryo quality improved with DHEA? Phew - thank goodness you have led the way in this regard for so many of us. Looking forward to hearing your latest news - am I right in thinking you are in the UK?
I am interested by your comments re the timing of oestrogen priming. In your point C of your last post you say that you found the pill doesnt work - do you mean oestrogen tables (like ethinyl oestradial tablets) or did you mean the birth control pill??
I think at this stage for my next cycle I will give my Dr's protocol a go. I am very happy with her and impressed that the she is researching protocols from around the world and taking from them what she believes will be best for me and others in my situation - from others I have gained an understanding that just finding a Dr that is prepared to try new things and experiment a little is a lucky find. She seems to have given this some thought and for that reason I am happy to follow her advice on this cycle. Having said all that - if it turns out that I get poorer follicle numbers/quality this time, then i think I will take your suggestion to her and give it a go for the next cycle. If you dont mind I would love to keep in contact with you over the coming weeks and let you know how it goes. I also have been sent a recent article by Dr Sher in the US which makes for some interesting reading - I will try to post some extracts if you are interested - unfortunately I only have it in word format so cant just post a link - but it has some of his thoughts on poor responders......
As for not knowing my natural cycle - I have often said to Dr's that perhaps I should come off the pill just to know that all was ok in the reproductive dept - and was repeatedly told that the best thing to preserve my fertility was to stay on the pill. And now the dilemma is that my husband and I dont' want to fall pregnant naturally (due to his genetic condition) - how weird I know - we are doing IVF and yet actively try to stop ourselves falling pregnant naturally. I think if this + 1 cycle do not work then we will probably take 3-4 months off in which time I would like to have my natural cycle monitored closely....
I met with Dr. Gleicher at CHR and finally he put me on DHEA 75/day.
I had FSH test two weeks ago and he said my FSH level is "8.9". He showed me a chart stated that woman age 33-37 should have FSH<7.9 so he made a conclusion that I have a POA(Premature Ovary Aging).
I went back to check my medical record. I never have a history of high FSH before. I saw my record for FSH test in Jan 2008 showing "4". Is it possible that my FSH can grow up that quick in half year? What's the good explaination on this? I might ask Dr. for the next appt.
Do you have any ideas?
My last IVF was Jun 2008, I got 8 embryos but none of them were good so nothing got transferred. That's my third times IVF.
You guys are the best - I'm so happy for you all taking your future families into your own hands. My accupuncturist used to tell me that its an early sign of a great mother. ;)
Lynny - Yeah, things can bump lot in a short time although it is a bit unusual. You can get it checked again next month and see if its staying up or if this month was a bump. Can't hurt and probably a good idea. You're in great hands I think - I used Gleicher's protocol. Your next set of embies will be rock stars after the dhea. that's just how it works.
Hope02 - sounds great. will look forward to your updates and truely hope it works for you. I think your chances are great given the degree of improvement between last cycles. And yeah, its great to have a doc who will really work with you. Its really the best. Yeah - the pill ovulated through but also the oral estrogen though that could be just me - I'm called a hyper-excreeter (sp?) so things go thru fast. We found that out when trying time release coated dhea and my body got none then without the coating it finally responded. Anyway - the patch was consistent regardless of what was going on with my digestion and that's also what Gleicher uses. I'm guessing he's had similar issue but, just a guess.
Over and out until I recover from this crush or a miracle comes along.
Forgot to say - hate to bum anyone out really.....my surrogate is still getting a negative HPT. Tomorrow is really the last day to get a + for anything even remotely viable. I'm uh bummed. Thanks for asking Hope...I really appreciate it. ;)
Sorry to hear about the HPT yesterday...I have everything crossed that tomorrow you get a positive result. This is such a hard journey - and you are a remarkable woman for persevering through what you have. Good luck and keep in touch. Hopefully we will both be celebrating our +ve's at Christmas
Just wanted to write a little post to vent some and to reaffirm how important it is to have a good RE. I went to interview one today and he pretty said no matter what test was done the only real indicator of outcome with IVF is age. (urghh) He got really defensive at the mere mention of DHEA. I'm just glad where I live (in North Carolina) there are at least five IVF clinics in less than 40 miles of my house. I swear what makes these egotistical doctors think I would ever want to play on a team where the coach doesn't even think I qualify to play let alone help me achieve the best possible game I can. So on to the next doc in September, I did call and make an appointment to try and get my regular physician's office to order my hormone tests so hopefully that will work out.
AngelaSK07 - what did you scan yesterday show??? I'm betting you've got a couple in there! (been reading tons on hcg#s)
Betsyj - hang in there - I had one actually say his goal was to get me PG. I know what he meant but he said it several times and creeped me out. There are good ones - hope you find one soon.
You gals are the best - thanks so much for all your support and cheering for us. Its really huge.
Sorry to hear about the negative HPTs. Still hoping you get a positive beta tomorrow!
I spoke to my RE and he simply refuses to give me any priming (BCP or estrogen) for my September Antagonist cycle. He's more concerned that I produce enough follicles. My first IVF in which I prematurely ovulated (Flare protocol), I only had 5 mature follicles. Now he's got me petrified that I won't have enough to get to retrieval even if the cetrotide (like ganirelix) prevents me from ovulating. How much DHEA should I be taking? I've been taking 75mg in the previous three cycles and then stopping after ovulation. This month, I've been taking 100mg but I can't take it all at once in the morning or my hair falls out like crazy. Should I try to take more? I really, really want to have enough follicles for retrieval.
Thanks Antitasto, you're willingness to help all of us is just amazing!
Sorry to drop off for a while... I have been keeping sporadic tabs just not posting. We are skipping this cycle when we found I had one huge left over follie (35mm - this after the last cancelled cycle with too few mature follies). I know sitting out is the only option, but am struggling to maintain optimism that there will be a positive outcome sometime (am 39 and every 'missed' cycle month is like a sentance; we've been on the TTC journey for 4 years now and 'aggressive' IF treatments for 2... it's all getting old at this point!).
Anyhow... wanted to send great wishes to Puglies on her delivery and such happy thoughts to Angela your growing babies!!! It really is wonderful to read the success stories of other women and know there is hope!
Anitasto -- my heart is going out to you for the HPTs but really do hope you'lll get your miracle with the beta... I'm sending many virtual hugs!
From another board, an interesting Dr's comment re: DHEA. Dr Kettle at SD Fertility (I am not familiar with but according to several on that board he's very well respected): his theory is that your body will determine the levels of hormones and once 'in line' will just pass through un-needed extras... so I guess according to his thinking if your T gets to that ideal level, beyond it your body will just discharge any extra gained through additional DHEA supplementation. He also is a believer in quality impact not additional quantity as a result of DHEA supps. The discussion if you're interested is: http://www.****.***
I found an online lab site "Econolabs" that works with labs throughout the country (maybe even further?). You can order all kinds of tests and they are done by places such as LabCorp. Anybody know anything about them? No doctor's order required which is really great for those of us that may have issues finding cooperative docs. The prices looked really reasonable as well. I looked briefly for any negatives but didn't find any and I wouldn't think LabCorp would affiliate with any scammy type companies.
Curious - why are you stopping dhea after ovulation? That's actually the time that it has its greatest effect...when you estrogen is low in the luteal and new follies are dependent on circulating Testosterone produced downstream from the DHEA. Doesn't sound like you need more...I'd just stay on it throughout.
Sorry to hear your RE is giving you a hard time. Have you considered looking around? Just curious about how dedicated you feel to this RE...these are tough decisions no doubt.
Thanks for writing back! I live in Canada where the doctors are a lot less flexible. If I want to get the kind of service you ladies get in the U.S., I'll have to come there. I was looking at the SIRM website (thinking of doing the Las Vegas group, timed IVF next if this doesn't work) and was a bit disturbed at how much they emphasize that high testosterone levels are damaging to embryos. Had to go back and look at the CHR site to reassure myself that I'm not making things worse by doing this prior to an IVF. I've never done an IVF without having taken DHEA (course, I've only ever done one anyway and I prematurely ovulated, got pregnant and then miscarried at 6 weeks). Who knows what I would have responded like without it.
Would you have specific thoughts about how much DHEA I should stay on until my September cycle? Should I increase it during the cycle if it looks like smaller follicles are not responding or falling behind?
I really, really appreciate all of your help with this. My RE told me to burn my computer because I'm getting too much info off the internet that's causing me to ask him questions. Without your support, I'd feel totally alone. Thank you, thank you for helping us all out here.
I'm assuming it was a negative beta? If so, big hugs! We're here for you, too, in whatever way we can.
I am concerned that Dr. Kettle's 'theory' will lead women to think that high doses of DHEA are safe as the extra is excreeted......as with all statements that change your course I encourage this adaje......trust, but verify.
Based on my own experience and the fact this is a quote from a respected RE, I wanted to provide a response well supported with literature references.
IN SUMMARY...ITS TRUE YOU WILL PEE OUT MORE DHEA WHILE TAKING SUPPLEMENTS...BUT NOT ALL OF THE EXTRA DHEA YOU ARE TAKING AND, IN TAKING TOO HIGH A DOSE, YOU CAN ALTER YOUR OVARIAN FUNCTION FROM POA TO PCOS LIKE BASED ON MY OWN EXPERIENCE.
Here's a more complete response with references and/or links to the studies:
Endogenous dhea is produced and passed through the liver to the urine at inidividualized levels according to a 1999 study by Makoto Ueki *, Masato Okano in relation to Olympic doping anlyses.
A study by Callies, F. in 1999 showed that when exogenous (supplemental dhea) is added at 50mg very little was excreted through the urine; however, when 100mg was added then significant amounts were excreted. Callies concluded that 50mg supplements individuals to healthy circulating levels.
HOWEVER, while significant studies to dose dependent effects of dhea for fertility seem slight to absent in the literature likely due to ethical risks, high doses of DHEA have been used to induce PCOS in otherwise normally functioning rats … “The injection of DHEA (6 mg/100 g BW in 0.1 ml of oil) for 20 consecutive days re-creates a mouse model that resembles some aspects of the human polycystic ovary syndrome (PCOS).” By H. Henmi T. Endo et. Al. in 2001.
This approach to studying PCOS, by using DHEA to induce the syndrome in mice or rat appears common in PCOS related literature.
Finally, DHEA, DHEAS and T are notably higher than average in PCOS women. Just google PCOS signs and symptoms.
In my personal experience, doses well over 200mg/day directly effected my FSH/LH ratio which is a key marker of PCOS.
The BT today was completely negative with hcg <2. Thanks so much for all your online hugs and support. You gals are the best.
So I now burry myself back in my research (can you say...escapism?) and progress on the science part of THE BOOK! I did all this two years ago and left my notes in the back of a rental car so its been a huge mental block to recreate the diagrams and notes. But I'm back at it and, if no baby comes out of this, maybe the book will. I know I'll feel LOTS better if I have SOMETHING to show for these years of injecting and digging for answers.
Hi Emma - thanks for your support! ;) If you're responding already at 75mg DHEA and loosing lots o hair at 100g and recently got PG then I'd say it seems you're doing well at 75mg. I did increase my dosage to bring up more follies during the cycle, but I would caution on that as others have not done it to my knowledge and, obviously, my outcome has not been so hot. If you do decide to do that during your cycle, for me it only took like 25mg from mid-stim cycle to hcg inj. that 'seemed' to accelerate the folly growth. But again - you got PG before and as anxious as we all get, I've learned that you can overdo it so try to relax and stick with what you know has worked. One last note - until you speak with other doctors you just never know what kind of flexibility you might find. Please don't assume all the canadian REs are sticks without at least a little checking?? I'd so love to hear of a good one. ;)
Hope that's helpful my dear. BTW - I used to rock climb near Montreal and met my DH skiing in BANFF. And I do so miss the snow and the seasons.
MidnightsChildren - yup, sounds like you could use some dhea for quality. I have a close girlfriends who makes gobs o eggs too and has quality problems. She started asking about dhea last month after 2nd failed xfer. such a bummer - sorry for you troubles so far.....sounds like you have great chance of success with a little hormonal hassistance. ;)
Betsyj - FABULOUS on the online lab for BW. Can you post the link?
Angela - I was reading a ton on HCG levels and healthy pregnancy indicators. I'm so happy for you its high HCG - really looking forward to hearing about the little bean's heartbeat! :) BTW - the Kettle link didn't come thru...would like to check it out.
DISCLOSURE - my 1st 3 cycles before dhea were with Dr. Kettle here in San Diego. Yes, I'm in the US and in San Diego (someone asked earlier ...sorry I forgot to answer). He's a nice guy. We're really lucky that as of the past year several offices here are trying DHEA or direct T patch.
PS - my DH had dreams of our kids the other night. I feel so much for him - he's been so supportive. In some ways I wish I were more comfortable with donor eggs for his sake, but I just can't wrap my arms around that idea.
Sorry to hear about the beta. I know what you mean, I also feel so much for my dh and wish I didnt have to put him through this. I am now in the middle of my second month on dhea (day 12) and am a bit concerned. I use the clear blue monitor and still havent had a middle reading (which detects rising estrogen levels) or a peak (the lh surge). I had the elevated fsh (15) and my e2 was 24 on day 3 this month. By now, I have always had something show up on the monitor (usually ovulate b/w day 12-14). I also thought dhea shortened cycles? I will keep monitoring, but I am hoping I am not becoming anovulatory on this. Thank you again for your feedback, your willingness to research all this is really amazing.
LAB for online orders: "www.Econolabs.com".
Just so you know, I haven't used this lab (yet) but from what I can tell it looks legit and I do know they use LabCorp. So for all of you with docs not willing to order tests, your problems may be solved and in my case I can have a requisition form emailed within 4 hours to take to the lab. I don't know if they cover every test but here are the ones I searched for and they had:
Anitasto - so sorry for your negative. Glad to hear you are really serious about the book, it will be great to conatin the knowledge you have so passionately pursued on your continuing journey into a great resource for others, and I'm sure it will be written in a way that captures your wonderful wit.
Awesome news!!! Looks like you weren't expecting it from your last post. What a great encourager for the rest of us girls in the over 40 club. Do tell more, on no meds except the dhea, wheatgrass etc..?
It really seems that DHEA may help with embryo quality (http://www.centerforhumanreprod.com/about_chrupdate_1207.html):
DOES DHEA REDUCE ANEUPLOIDY?
We previously reported that women after DHEA supplementation produce statistically significantly more chromosomally normal (euploid) embryos. We at that time, however, cautioned from reaching the conclusion that DHEA reduces chromosomal abnormalities (aneuploidy) and noted that our finding could be due to the fact that DHEA appears to increase egg and embryo numbers, which, of course, would also increase the number of euploid embryos.
At the same time we, however, also pointed out that DHEA, at least theoretically, also could have an affect on chromosomal abnormality rates (ploidy), since we believe that DHEA somehow affects the whole 4.5 months long follicular recruitment process and, therefore, also could affect ploidy.
As women age, the rate of aneuploidy in their embryos increases. As a consequence of more chromosomally abnormal embryos, their miscarriage rates go up with advancing age. This is exactly the reason why the expected number of miscarriages in our study group of women above age 40 (until age 47) would be expected around 45-50%. The fact that we see less than half the expected miscarriage rate strongly hints at a reduced aneuploidy rate in embryos of our patients. Together with our earlier data on more euploid embryos after DHEA treatment, all of this suggests that DHEA, indeed, may have a direct effect on ploidy and may reduce the risk for abnormal embryos. This then, of course, would also, at least partially, explain why we overall see so much better pregnancy rates with DHEA supplementation.
I will definitely read your book and tell others about it! Let us know if we can help anyway as you have given each of us time to explain about DHEA and our unique situation.
A little udpate from me: I have been on DHEA 25mg for 6 weeks now. I finally got my PCP to order some blood work on CD3. My Total Testesterone was 40 (it was 86 in Nov-07, reference range 20-76). DHEA-sulfate was 86 (reference range 25-220) and progesterone is .77.
I am thinking about starting on 50mg a day starting today...
I am going to a new OBGYN. I will be asking her to monitor my hormone levels. Hopefully she will agree to it.
I am so sorry to hear about your neg beta. It really *****. I can only imagine how frustrated you must feel. You are a true fighter so at least you'll have no regrets. and who knows what might happen next... Lots of electronic hugs...
I wanted to ask your opinion, here is my situation, I have been taking 50 mg of DHEA for the past 7 weeks + baby aspirin and chinese herbs, also doing acupuncture 2-3x/week. On day 21 of this cycle i had a night sweat ( not too severe, but I woke up damp). I am now on day 33 (regularly 28days) have not gotten my period, have done two home preg tests that have resulted negative. Last night I also had a bit of a night sweat (which I associate with the hormonal change right before the period comes). It is strange because I have no symptoms either way (pregnancy or period) and i have also heard you say that DHEA shortens the period, I wonder what you make of this?
OK, all the best to the rest of the ladies!
my period came yesterday 10 days after the iui i feel like ive been shot through the heart what i need to know is what does this mean and where to go now i had two good sized follicles so does this mean the quality was no good also my period has come 20 days after the last so has the gonal f injections messed my cycle how long should i wait till i try again am i taking the right dhea because i just ordered it off the internet because its illegal to sell it here in the uk but not illegal to buy it my clinic won't consider me for ivf because of my raised fsh levels and age 40 in oct its so difficult here because we are bound by the clinic as to what bloodwork we can have i'm sorry so many questions i would appreciate any help as to why you think this didn't work and is it worth continuing or am i just throwing money at somethig that just isn't going to happen
pyar-i'm so sorry about your bfn. meds can throw you off a little. stay strong and never give up!! take your dhea try to get as healthy as possible. man what i wouldn't give to be 39. good luck girl!
anitasto-so sorry about bfn. i'm sure it will happen soon. if anyone can figure out how to have a baby its u. if you have any advice for me i would love to hear it. my prog was 8.8 on fri. i think i'm 3 weeks pg. hcg was 601. i've stopped dhea and just taking prenatal and prog 200 mg 3x daily.
angela- how r u?
this was my "taking a break" cycle. no meds at all. min bd. i'm still in shock. i'm scared to death though.
I agree with oneform, still too soon to give up. As frustrating as this can be, the road to having a baby can be long and bumpy, unfortunately. But you should continue try. Dont despair.
Oneform, your story is amazing!!! Congratulations! True inspiration. I know what you mean about feeling scared, Its just hard not to be, but good things really do happen.
ok gals, gotta keep trying.
Just filling you in after my last post. I just got my period on day 34, which is highly unusual for me. Its always sad, but I guess it isn't really a surprise.
In any case it still contradicts the idea that DHEA shortens the period. I'm going to get some blood levels this week to see where am at.
Hope you are feeling better.
This is an absolutely fantastic thread! I have been following it a short while with great interest.
I am VERY sorry to hear about the disappointments a couple of you have suffered the last weeks and days. But this DHEA gives new hope. Hang in there!
I miscarried twice last year in the tenth week. One was tested and showed genetic defects. Given my age, they weren't surprised!! I started DHEA 5 weeks ago--50 mg per day. We will be trying IUI after stimulation after one more cycle. My AMH is shockingly low--at .4. Yikes!! But my CD3 FSH is 11 and estrogen and progesterone are great throughout the cycle.
I have also added vitamin D, given it's suspected hormonal effects on follicular development. I will try to post something on that soon. I also added 5-HTP to raise serotonin levels--estrogen is made from serotonin. I started 5-HTP about 3 months ago and noticed a big difference in my sleep and skin. I suspect it is why my estrogen levels were good throughout the cycle when tested last month. (Prior to taking it, the backs of my hands were always dry and wrinkly!) I also use Progesterone cream on the fourth day after ovulation--confirmed by charting. I ovulate every month.
Everyone talks about taking DHEA to improve follicular development. But I suspect it can somehow increase the numbers of available eggs and the supply does NOT simply decrease due to age. When old ovaries are inplanted in a young rat without ovaries, the old ovaries start to behave just like young ones. If eggs simply run out, how could that happen? (I will try to find the study on this.) I think the whole issue is hormonally controlled and when the hormones begin to change, the eggs start to disappear and fail to develop. But it can be reversed.
If that is the case, my AMH level should increase. Well, we will see what happens.
Anitasto--I don't think there is anything wrong with your uterus. Sounds like the embryos are just not continuing to develop properly. Hopefully this will continue to improve on DHES. When you have been on it 6 months, see what happens.
I had my little boy, my first kid, at age 40, by the way--all natural, no problems. I think it is just WRONG when clinics turn women away from IVF just because of their age! Age 39 seems too young! FSH levels can be brought down by DHEA in many cases. So I just see no reason to not at all try.
My theory is that ovarian reserve can be INCREASED. Yes, crazy, I know. I think new eggs can develop when the levels of DHEA and vitamin D are correct. I do not believe that we simply run out of eggs no matter what. We run out when they stop developing properly because of decreased homone levels, including vitamin D, a hormone in itself. I can find no other explnation than hormone control of ovarian reserve given that old ovaries will act just like young ones when transplanted into a young animal. If that study can be duplicated, I think the basic premise about ovarian aging is FALSE.
Here is some information on vitamin D. The first one is about using vitamin D on women with PCOS and shows how it somehow modulates the effect of excessive angrogens and promotes follicular development. Several women got their periods and got pregnant. Perhaps it also helps development in non-PCOS cases or helps when DHEA is added. Seems that Vitamin D influences calcium regulation which is necessary for proper follicular development.
I think the amount of viamind D is a multi or prenatal vitamin is COMPLETELY insufficient. The amount one would get from a sunny day exceeds that amount many, many times. And most of us have been taught to stay out of the sun and eat few foods with substantial amounts of the vitamin.
I am using cod liver oil is capsules to get a good supply. I don't take too much since I don't want too much vitamin A while trying to get pregnant and there is also some vitamin A in cod liver oil. And you would not belive how high the percentage of people with low vitamin D levels is! I will post that later when I hafve time to research.
See also: http://askcassyfirst.com/blog/?page_id=228
I should add that I am 43 now and when I had my two miscarriages late last year, they were natural pregnancies. I really think age should not be the determining factor for denying someone IVF treatment!
Woman undergoing chemotherapy had one ovary frozen. Other remained and should have been functionally destroyed by chemo. Frozen ovary transplanted into abdomen-NOT into its normal location. She became pregnant naturally. Theory is that transferred ovary caused stem cells in bone to travel to remaining ovary in regular position where they then made new eggs or it caused ovary stem cells to produce new eggs in remaining ovary.
Congradulations!!! Congradulations!!! Congradulations!!!
Just stay on that progesterone mama - and have your P tested to make sure you're absorbing it well. That's a really nice high beta so you're likely in great shape. If you're still taking the dhea I'm settling into a 25mg/day philosophy after BFP because we're obviously naturally low in it to begin with, but you just need anough and don't want to risk too high T with a pg - that would be a bad thing. I wish Gleicher would just publish his whole protocol, eh?
Best advice I can offer is - from my mom - get yourself a great book that's hard to put down and enjoy. I also like to go buy gobs of girlie magazines and just flip away for the eye candy. Its the best way to relax and take your mind off things.
The usual stuff - avoid caffeine, and stay away from any unusual supplements - just your low dose dhea, prenatals, and folic acid. That's all I really know...but I did find this to evaluate pg quality while I was waiting on mine....Estrogen tests. Basically, the average E2 in a healthy pregnancy is 22,000pg/ml. We tested my surro and hers rose a couple days after Xfer but then fell 200 points 5 days after xfer.
"The results signified that E2 indicated placental function, that E3 indicated placental and fetal function, and that E4 indicated fetal function." - Nippon 1981
wow thanx for all the info i was just feeling so hopeless and sorry for myself you are right gotta hang in there can i ask what dosage of 5-htp do you take also do you recomend any partivular brand of dhea i just order mine off the net as is not available to buy in the uk
I am taking 100 mg of 5 HTP in the morning with the 50 mg DHEA and 100 mg before bed.I don't know anything about the different brands of DHEA. I do notice effects from the one I take (Puritan's Pride), so it is clear that it is effective. My skin is oilier, I have an occasional breakout. I am trying 50 mg rather than 75.
I really wonder what your follicles will look like after 4-6 months of DHEA. Perhaps your clinic will look at them then and be quite surprised! My fingers are crossed that that is the case for you.
My Re was VERY skeptical about me wanting help. He noticed my age--43!!!--and my two miscarriages in the last year and felt sure there was no hope. (Plus I have a 6 X 7 cm fibroid!) When he tested me last month, I had been on the 5-HTP for a couple months and had start DHEA a couple weeks before. Well, after testing everything, he was very surprised. I know that the treatments have made a difference. And I expect after more time, there will be more changes. I hope that this is also the case for you. Anyway, after seeing my values, he says we can certainly begin with IUI and take it from there. Yea!
But it is clear for me that these supplements have turned some things back. Cervical secretions are now like they were ten years ago and really good (sorry TMI), my skin is different, I now ovulate on day 14 instead of day 12, and my cycle is always 28 days, rather than 25-26. Cool!
I also ask you to please consider adding Vitamin D. This might be just what is needed to get things rolling for you. Don't be scared about toxicity. This is NOT a big risk with Vit D, contrary to folklore. And I definitely think the cod liver oil tablets are best. The typical vitamin D tablets with calcium or with calcium and magnesium are not very absorbable at all and have too low a dose.
I forgot to add earlier that I also had an Inhibin B test which reflects how many follicles are there. It was perfect. So, I have relatively low FSH, high Inhibin B, great E2 and progesterone, and a totally crappy AMH level. What does it all mean? I don't know but we will see with a little more time. I am hopeing that the Vit D and DHEA improve the quality of my eggs (and the quantity so my chances are better) and I can get pregnant and not miscarry again. Fingers crossed for me--and for you!
hi hun thanks again for the info so i just want to tell you what i'm taking at the mo please let me know what you think
dhea = 75mg no side effects
chinese herbs x twice a day
what i'm thinking to do is continue the dhea and add 5-htp and baby asprin
although its difficult to know why my iui didn't work my gut instinct is telling me its my egg quality because my last tested fsh was 20 and my AMH = 2.13 antral follicle count of just 3 what do you think i really am going by my gut feeling as my doc really isn't hopeful and just wants me to jump to donor egg so you can imagine he's not very flexible i'm doing all this without his knowing
Hey - glad your period came and put your mind to rest. I think its a really good idea to get your levels checked. I read your posts last night and have been thinking about it ever since. A few things come to mind (finally).
1. After my last IVF cycle retrieval I got my period as expected, but on the next cycle my period was about 10 days late. So I had a PG blood test and it was negative but my other hormones were high: progesterone and estrogen. The nurses said that if I 'was' pregnant those levels were perfect. So it was strange and I was glad to have the final word and eventually my period about 4 days after the test. But this was also just about 6 weeks after I had been on very very high dose of dhea - too much - for my last cycle. What I now think happened was that I had ovulated and had good progesterone and also had early developing follicles which were producing estrogen at the same time. We did see, before starting downregulation, follicles that were growing quicly and early after ovulation. But we wouldn't have seen the full result of that earlier because after just a couple months on dhea I started on estrogen patches for downregulation right after ovulation. Thus early follicle growth was essentially subdued so when the patches came off I had quick fall of estrogen and flow within a few days.
2. I've been working on this endocrine diagram to understand how everything works and there are two elements in the translation from Pregnenolone to Testosterone or Estrogen. One determines which hormone is produced and the other how much. I had another doctor yesterday tell me that in women androgens are precursors to estrogen, seemingly minimizing the potential for testosterone. I think the path and the amount at this junction is different for everyone and its possible your path is a bit different. That said, I do think the more likely explaination is #1 above.
3. Its possible that you were pregnant and then HCG dropped before your test. This is always a possibility.
I'll be interested to hear your blood test results.
If everything seems normal then I would suggest getting some of the vivelle dot patches 0.1mg and using them right after your ovulation. But with this I would also do hpt before removing the patches because you can still be pregnant and removing the patches could be a negative.
As for night sweats - I'm really not entirely sure. I still have night sweats myself and just last night changed my t-shirt in the middle of the night. But the next time I have a physical I think I'll mention it. I just never really thought too much about it.
Thanks, as always you are great with your thoughtful responses...
I think I kind of follow you. I did get my BW today so I'll post the results once i get them.
I am not taking too much DHEA (50 mg am, and that is it). of course every body is different and that may be too much for me.. I'm not too sure. maybe that will be reflected in the BW.
I am not sure I get why the vivelle patches would be good after ovulation? can you say more....
anyway i will follow up with the BW.
all the best,
Pyar, sorry but I don't know anything about the chinese herbs. I know about Royal Jelly in general but have not studied it with regard to fertility. I know that it is high in pantothenic acid, a B vitamin. The wheatgrass juice sounds very healthy, but I know nothing about any specific fertility effects it might have.
My feeling about vitamin D is that it is pretty important to follicular development and also to protect against any possible carcinogenic effects of DHEA. If you couldn't take the cod liver oil capsules, I guess you are left with the regular tablet supllements, which I think are not so great, and of couse, the other big natural source, the sun. Daily full-body exposure in the summer in the middle of the day for 10 to 15 minutes (do NOT turn pink!) would give you enough and, in my opinion, be good for health in general. You can read more about this on the net.
Since quality is likely your problem, vitamin D and DHEA seems like the important supplements. After 6 months of these two, see how things go. Perhaps the quality will be really good, as the DHEA studies seem to indicate. Personally, I would not stay on 75 mg of DHEA for longer than about 4 months. I would move down then to 50, still a high dose and the amount used in the Greek study. But that is just me.
I read that DHEA will convert more readily to testosterone in women and estrogen in men--different pathways, different effects. I don't know if that is true or not. How long have you been on DHEA all together now?
I get some night sweats the last week of my cycle. No idea why!
One thing about taking aspirin to thin the blold and increase blood circulation...aspirin has been shown to PREVENT ovulation in mice, rabbits, and mice. There is a particular syndrome named after this effect. The progesterone level will increase indicating ovulation has occured, but the egg will actually not have been released. Big problem obviously.
for the specific warning from an aspirin manufacturer regarding ovulation. There is a lot of info about this out there.
Anyway, I would not take it until the third day after ovulation has been confirmed by a test or a chart, just to be safe, and would then take it until the end of the cycle. Perhaps fish oil will work just as well.
How are the pregnant ladies doing??!! I have my fingers, toes, and eyes crossed for you!!
i've been on dhea since june 75mg i reduced to 25mg while going through my iui which was about a week so now i'm back to 75mg i have also ordered some 5-htp in the hope to improve quality i will being doing the iui in sept so by then i've been on the dhea for 3 months ish do you think this is long enough or should i wait a while longer
I don't know that 5 HTP will help quality but it seems to normalize estrogen level since it raises serotonin and your body can make estrogen from the serotonin when needed. I found that it was in one expensive fertility formula and the studies on it made me this it was a very good idea. It can improve cervical mucus, etc. And sufficient estrogen is important to the initial development of the embryo and to building the endometirum and implantation.
As to timing of the IUI--the studies on the DHEA said women were getting their cycles back and getting pregnant naturally after as little as two months on it. Then the woman who took it and originally brought it to her doctor's attention took it for 6 months, I believe and had INCREASINGLY more follicles each month. So, it does seems that it has the potential to improve follicle numbers, and hopefully, quality, over a period of time. I have no idea what yould be best for you but if the follicle count at the beginning of the cycle appears low, maybe waiting a little longer is a good idea. (I have not yet had IUI, but I believe they look at the number of antral follicles before stimulating. Is that right? If so, you would maybe have an idea whether or not there has been improvement.)
I have only been on it 5 or 6 weeks now. My doctor wants to start this next cycle but I think I will wait another month.
This really is an exciting possibility for us! I believe that two gals here are already pregnant on DHEA. I think that is not a bad result so far! I so much hope that there are more success stories.
Patches after ovulation will quiet the activity down before your cycle-often called downregulation. Follicles just start taking off in growth so fast, even before your period starts is what I saw generally, and this keeps them quiet and allows you to get a true baseline of FSH and E2 about 3 days after removing the patches and starting stims.
Make sense? :)
Hang in there babes!
I can't figure out where these guys are getting the idea that higher T damages embryo quality. I'll really have to do some digging on that and hope I find some solid science behind the statements. Seems contraindicative to what's been happening for us. But maybe they're just speaking generally and that's not quite the case with poor responders. Have to see...
Robertsmama - welcome to the party. I took DHEA for two years in a wide range of doses and tracked my blood levels and side effects throughout including follicle counts which correlated directly with my T level. Glad to have another hound out there searching for answers with me. Its really great.
BTW - aspirin is really especially important with DHEA because DHEA increases red blood cells and thus 'thickens' the blood making it more difficult to reach their target through narrow capilaries. The aspirin and excellent hydration help ensure the blood supply to the ovaries. I took plenty of aspirin and plenty of dhea and never wanted for ovulation....my ovaries were super active. Also, there are ALOT of studies on the benefits of aspirin in ivf - baby aspirin that is. It may have this effect in higher doses during regular cycles, but baby aspirin is really important with dhea cycles.
Hope that makes sense. I'll be reading your other links soon as I have more time.
I totally agree with that the theory of limited eggs is hogwash concluding that myself after research I did last year that explained much of the egg production process. Ya just gotta wonder how these theories come about. ;)
We have a nephew in town this weekend so probably will see you gals back here Monday.
Anitasto, great information about the aspirin. I had forgotten that issue about DHEA specifically thickening the blood. I will continue to take it after ovulation and will start at the first part of the cycle until three days before ovulation. I hope that take care of it. I also use fish oil everyday which thins the blood very well.
I hope so much for you that the DHEA is going to get your little follies up to top quality so they will get going!!! Maybe vitamin D will help, too.
I do look forward to seeing what comes out over the next few years about this dogma we have been taught that human ovaries never produce eggs after birth and once the quality declines, there is no going back. I simply don't believe it. I hope we are correct but hate it that in that case a lot of women have given up when they might have had a chance. Well, we will have to see. Perhaps we are far away from having the key but I hope we are at least on the right track.
And I also do not understand this issue about testosterone hurting embryos since the studies with DHEA show that the miscarriage rate is much lower on DHEA. Perhaps too high levels are damaging but just plain high levels are fine. OR, perhaps vitamin D protects the embryos from any damage DHEA might cause in very high doses or after long exposure, since it is also involved in follicular development. I am thinking about women with PCOS who have high levels but have a high miscarriage rate, also. Since vitamin D helps them with their fertility, perhaps it holds the key to protection in the case of prolonged high exposure to DHEA. Could vitamin D maybe help you since you have been on high dose DHEA a long time? But then you don't have PCOS from too much DHEA and your levels are tested. Hmmm....Just thinking out loud.
I commend you, by the way, Anitasto, on your great attitude. My heart broke for you when you wrote what happened with the surrogate. My fingers are crossed so hard for you that they are turning purple as I write.
By the way, if I remember correctly, anti-inflammatories, including aspirin, interfere with an enzyme that allows the egg to break out of the follicle. The hormones are not affected so the ovary thinks ovulation has occured and progesterone goes up as if it had. Fake ovulation! Something like that. Anyway, this is a particular syndrome some women have suffered from but few hear anything about it from their doctors.
And there was a scary study with rabbits. After a single does of ibuprofen prior to ovulation, not a single one actually ovulated! Yikes! So maybe skipping ithe baby aspirin two or three days prior to ovulation is good insurance for people who are on DHEA but trying naturally first.
wow so the dhea could help with follies but cause issues with blood thickening gosh this was never gonna be easy can i ask does it matter what time of day i take my dhea at the mo i spread it out over the day taking 25mg morning afternoon and night.also i just got my new protocol same as b4 400 gonalf injections but for a bit longer this time i suppose they must want my follies to be larger this time b4 they induce ovulation and do the iui i don't know the clinic didn't really explain everything unless i ask so thats what i'll do when af comes and we board this roller coaster ride again robstersmama when do you start your iui cycle
I think in the studies that the women took 50 mgs DHEA in the morning and 25 at night, although in the Greek study, they took 50mg, not 75. I take 50 in the morning and none at night. I think the body produces most of its daily DHEA early in the day so that is why I take it then. But I have not read much on this. Please let us know if you learn anything more.
Pyar, good luck with the follies this time!
My doctor wants us to meet with him on Monday, CD2. I am a bit afraid to start, having bewen on DHEA a relatively short time. And I am afraid to NOT start given my abysmal AMH reading! He also wants us to consider IVF, as well as IUI. I guess there is a big difference in cost. But IVF would allow us to freeze embryos to maybe have a third baby later (of course, assuming, perhaps ridiculously, that I will have enough eggs--doubtful). On the other hand, since I have been pregnant twice in the last year already, maybe IUI will work. But on the other hand, I might just miscarry again at ten weeks due to defects and lose a lot more time. With IVF, they could find good embryos and I would perhaps have success. On the other hand....
I have no idea what to do. And I am not quite prepared for multiples, were I even that lucky. And what if there were multiples and one were defective and died at 4 or 5 months. What would happen to the other(s) then? Clearly at my age, the risk of defects is quite high. So, should I just try naturally on DHEA a little longer to reduce the risk of multiples and possible premature births, etc? What a mess. I have some serious soul-seraching to do before Monday. Any one else's input on these issues would be most appreciated.
hun its likes you have read my mind these dilemas are constanly running around my head theres a lot of pro's and cons which ever road you take i in the end tend to go with my gut instinct i think time or lack of it is also a big factor its not like we have plenty of time to try one thing then keep moving on to other methods try not to put yourself under too much pressure try too write down any questions you may have for monday i'm sure your doc won't want any decisions from you straight away as for multiples i'm not sure what happens if one dies but i know it happened to my sis in law she was preg with twins and one died at about 4 mths and she went on to deliver the other one healthy
Hope you had a nice weekend. I wanted to keep you posted on my BW for day 3 after the last unusually long cycle (36 days).
Here are the values:
FSH 4.7 (slightly higher than two cycles ago before i started the DHEA)
Estradiol 46 (in range)
progesterone 2.2 (in range)
DHEA- S 601 (out of range) (normal range 40-325)
Testosterone total free 22 (in range)
Testosterone free % 1.2 (in range)
Testosterone, free 2.7 (in range)
I also had a CBC and all the values are within range as well. I'm not including the full detail just cause there are a lot of different types of cells.
Any thoughts??? I am still taking the 50 mg of DHEA in the morning + aspirin/ PM , i think I read in one of your old posts that you thought that high levels of DHEA were nothing to be concerned about, as long as the other values were within range...
Love to get your take on things...
Hi Pyar.Thanks for the good wishes. The doctor put me on Gonal F (250 mg) I thought this was high dose but I guess it is not so high if you are on 400 mg. We are going to go back next Monday to check progress. We are going to see how I respond to the Gonal F and will try naturally this cycle. If no luck, then IUI is next. I am still worried about multiples but better that than no success at all. I just can't wrap my head around how to take care of to infact and toddlers at once! I have one boy and siimply cannot see how that is possible! Anyway, with 2 miscarriages, I need to be more concerned about babies with problems that don't make it, than having too many eggs. So, I will try to relax. I sure hope we have luck.
I decided to take 75 mg of DHEA in the morning and 25 at night until ovulation. Then I will go back down to 50 mg per day. I am taking 100 mh 5 HTP at night and still taking my higher doses of Vitamin D.
How are things going with you? Any any developments?
ANDREA, good luck today! I sure hope you get great news!!!!!!! Yea!!!
hi rob 250mg thats good the doc must think you going to respond mine did 450 because he didn't expect me to respond with anything lower did i ever mention my AMH was just 2.13 if you produce too many eggs could they not take some out and freeze them as a back up and leave one in for you to try naturally i might sound really stupid but that sounds like its do able if anyone knows please let me know .I'm waiting for af so we can try again fingers crossed for everyone trying again please up date us on how you're doing I just found out today my sis in law is pregnant she only just started trying i'm happy for her but it hurts and that make me feel guilty for feeling hurt why should her being pregnant hurt me thats just wrong anyone else been through these feelings ?
Sorry I've been away for so long. Thanks for posting your labs. Can you add the units for your results? I just want to make sure I'm comparing apples to applese before responding. I'll check back frequently for your update and respond quicky. ;)
Hope you are doing well....
I am not sure I can give you the units, but I will give you what is written on my lab report. Hopefully this will help.
Here it goes:
FSH 4.7 mcg/dl (slightly higher than two cycles ago before i started the DHEA)
Estradiol 46 pg/ml (in range)
progesterone 2.2 ng/mL (in range)
DHEA- S 601 mcg/dL (out of range) (normal range 40-325)
Testosterone total free 22 ng/dL (in range)
Testosterone free % 1.2 %(in range)
Testosterone, free 2.7 pg/mL (in range)
I also had a CBC and all the values are within range as well. I'm not including the full detail just cause there are a lot of different types of cells.
As you can see i just copy-pasted adding what i believe are the units for each value. Hopefully it is clearer now.
Thank you again and don't worry, i understand wanting to take time off... I really trust your opinion though so i hope you don't completely disappear, your input and guidance has a been a source of strength and inspiration for many of us.
In my case, I tried for 3 months to see if it would increase and ultimately realized my baseline T was lower than those even in Casson's study who started at around 40pg/ml on average. This was when I concluded that I needed more. My DHEA-S to T ratios were consistent with Casson's, but levels lower.
My concern in your case is that your T does not appear to be climbing and your ratio of DHEA-S to T is pretty high. Now, one reason is because you recently lowered your dose you still have extra DHEA-S hanging around but its falling off so conversion to T is slowing down dropping your T. But in looking over my spreadsheet of data, I've never had a ratio like yours.
If you can give me another day (have to run right now) I'll dig some more and see what I can find. There are conversion points in the trickle down of these hormones but I don't know if they are testable and will need to look it up.
But you're right about the FSH. While your previous was 4.4 and your current is 4.9 those are normal variations but your E2 is slightly more elevated as well. Its as if your body is absorbing the DHEA by your DHEA-S numbers but it doesn't seem to be trickling down.
In the meantime...rest assured there is another way. An Italian study used a Testosterone patch for just 3 or 4 days early in an ivf cycle and improved results in 26 women from an average of 2 eggs to 8 eggs. This approach with the patch would bypass whatever your body is doing/or not doing with the DHEA.
Be back soon. And don't worry - I'm not going anywhere. You guys are my inspiration to keep working on this and writing about it.
Thanks anita, as always ur the best!
Just to clarify however, I have not lowered my DHEA dose. 50 mgs is what I have been taking from the beginning (8 weeks ago -roughly-).
You mentioned no alcohol, and in all honesty i have had a glass of wine here and there, not too much, just a glass with dinner occasionally.... Could that have something to do with it?
Also, what do you think of my E2 levels? is that something i should be concerned about?
ok. that is it for now. many thanks!
OK - I just went back to my old notes on you with your original info. Are you still taking 60mg of Armour thyroid? When did you start taking it....before/after the DHEA? I took 30mg Armour thyroid until I figured out it was having an effect on my DHEA absorption. If you send a fax# to my message/email on this site I'll send you a graph I made that shows this. I've used it in talking with several doctors....it's very interesting.
All of your other numbers are really beautiful. Your estrogen is in fact perfect.
Its definitely possible the alcohol is effecting your T. If possible, its really best if you can avoid this because it always had an effect on my levels. Sorry. ;)
Also - are you exercising much?
I'm still thinking on this and wondering. I really have to go back and read your original posts....tomorrow. ;)
Well, I am still taking the 60mg of armour thyroid.... I do yoga 4 times a week, i've been practicing for years, so i take advance classes but it isn't cardio or intense that way...
Finally, lately i have been keeping away from the alcohol but not a 100%...
Would love to see the chart that you made I have to be present for to operate the fax at home but I can as my hubby for a number. I will get back to you for that.
THanks a lot, anita. I really feel like i cant thank you enough. It just feels so good to know that someone is there with you trying to make sense out of things!...
all the best,
Hey girl.....you sure sound like a healthy gal! ;) Always thought of yoga but one of those things just haven't jumped on yet. If I ever got back into rock climbing I'll bet it would be great for prep.
Here's the thing....even when my exercise was chewing up my T, it was also chewing up my DHEA-S. So I'm becoming less convinced this is anything that you're doing.
I've been going back and reading over all of our posts, summarizing your data, and ... of course... thinking. I have many thoughts at this point but still more reading to do.
In the meantime, having re-read your info, and that you tested positive for anticardiolipins (I don't believe aspirin is enough to address that issue based on some other women's experience that I know of) .....I'm certain it is time for you to consult this woman that I was just recently referred to. Her name is Dr. Coulam, she specializes in recurrent miscarriage and implantation failure. Her website is super informative.
Here's the link: http://www.illinoisivf.com/recurrent-pregnancy-loss/index-rpl.html
her phone is: 847-869-7777 (this goes for anyone else reading who's having recurrent pg loss or beautiful embies not implanting with multiple attempts)
Dr. Coulam takes phone consults on Thur and Fri for $350 (you have to bill insurance yourself) and I just postponed my 10am appt. for tomorrow to next week while I wait for blood test results. I don't know if you can get setup with them that quick, but it's probably available if you want it.
Also - you should look into Repromedix Lab that offers highly specialized testing for recurrent miscarriage and implantation issues.
I've spoken with them on the phone as we just shipped my blood off to them yesterday. The gals there are SUPER nice. They'll work with your doc's nurse staff to get them the right info for drawing blood and its shipped Fed Ex to them in Woburn, MA.
They do bill your insurance (they accept mine which is Blue Cross).
I'll be very interested how this turns up for you. In the meantime...I'm still working on you. You're such an interesting girl! ;)
1. How much FSH were you taking in your cycles (usually 200 - 400IU) and what brand?
2. Appears your FSH was 4.7 BEFORE you weretaking DHEA. Correct?
3. Do you get blood clots in your period blood?
4. Is there a known cause for the heart defect found in your prev pg...e.g. is it chromosomal, genetic or other?
5. Can you post your antiphospholipid AB panel for me?
6. When did you start Armour Thyroid and what was your bloodwork and symptoms before you started it? Very curious about this.
Look forward to your response when I get back from my counselor.
Hang in there babe - we will make heads or tails of this!
Hi Lynny - how have you been?
Have you taken a pregnancy test? If that's negative.....
Chups has just been going through a very long period after 8 weeks on dhea.
What was your last day 3 hormone test results?
If you're not pregnant, then I'd recommend if you can getting some bloodwork for Progesterone, Estrogen, DHEA (fasting in the am), DHEA-S, and Testosterone.
When I couldn't stand the suspense after a 33 day cycle (after going off of very high doses of DHEA) last month I went in for hcg and above bloodwork. They said my hormones were 'like I was pregnant' but I wasn't and my period came 4 days later. I didn't mind waiting for it as I knew whether or not I was actually pregnant....suspence was worse than not being pregnant by then.
I just wanted to share few things after being on DHEA for 9 weeks now...
1-5 weeks DHEA 25mg taken first thing in the morning before anything
Had hair loss lot more than usual.
Estimated ovulation on CD22. This was after IVF cycle, so it could have been delayed from the IVF/drugs etc.
Day 3 blood work (after 6 weeks of DHEA 25mg):
Progesternoe .77 ng/ML
Total Testosterone 40 (range 20-76 ng/dL) <<< This dropped from Nov-07
DHEA Sulfate 83 (25-220 mcg/dL)
6-9 weeks DHEA 50mg taken first thing in the morning
Lot less hair loss than first 5 weeks
Hair turned oily (have to shampoo every day)
I am on CD 22 today, have not ovulated, have not gotten positive OPK yet. My OV was between CD 17-18 before. I have had lot more fertile CM than any of my previous non-medicated cycles! Thats a good thing.
If you would like to see my temp chart, here's a link to it,
I found a OBGYN who practice alternative and functional medicine. I am hoping he can monitor my levels. A friend of mine seen him recently and she was advised to take DHEA and 5-STP by him.
Ok let's see where I can start, with the info you are asking me:.
1) In my cycles they always used Lupron to start and then Follistim for the stimming. here are the doses as I recall them:
1st cycle: 350units (although im pretty sure they reduced the dose towards the end)
2nd cycle 350 units (also reduced towards the end)
3rd cycle 275 units (same thing- reduced) This was my best cycle.
2) Before I started the DHEA my FSH level was 4.4 now it is 4.7 ( not a big variation - i think)
3) I have always had blood clots with my periods.
4) The heart defect had no known explanation, the baby had genetic tests performed and everything was normal. The Drs believe it was some kind of developmental
accident that probably occurred towards the 6th week of gestation...
5) The Hypothyroid was always asymptomatic for me. It was discovered randomly, and in all honesty i dont really notice any difference with of without the medication. Before Armour T i was taking Zynthroid for a year and then Levoxyl for another year (roughly)
and just recently, 5 months ago my acupuncturist/MD suggested i take the Armour.
6) The results of the Antiphospholipid AB panel are as follow:
Cardiolipin 14H reference range, Normal 15 u/mL
Cardiolipin AB IgA <10 U/mL (in range)
Cardiolipin AB IgM <10 U/mL (in range)
PHOS Serine AB IgG <11 U/mL (in range)
PHOS Serine AB IgM <25 U/mL (in range)
PHOS Serine AB IgA <20 U/mL (in range)
B2-Glycoprotein I IgA <10 U/mL (in range)
B2 Glycoprotein I IgM <10 U/mL (in range)
As you can see, only the first value is out of range and it is in the "equivocal" zone. Also important to note, following your suggestion i had CBC done and everything was in range and looked really good.
It is mysterious because even though I have not gotten pregnant with IVF despite the beautiful (even pgd tested embryos) I did get pregnant twice before, and implantation didn't seem to be the problem... I really have no clue if that (implantation issues) was a problem that came later or what, but it is all mysterious to me..
Thanks for the contact with DR. Coulan, I will definitely keep you posted on what that brings...
As for the Yoga, it really has changed me. can not live without it.
much love and of course thanks again,
Your anticardiolipid antibodies are associated with blood clots, implantation failure, miscarriages, and congenital heart defects in fetuses.
The treatment for this is injections of immunoglobulins - these bind the antibodies so they cannot do their damage.
Here's a link to the study
"Placental pathologic conditions in anticardiolipin antibody positive women whose infants had congenital heart defects."
Dr. Coulam from what I've been hearing is the best resource for this situation.
I still am not clear on why your DHEA-S to T ratio is so unusual but I will keep working on it as I have time. However, as I mentioned early in our dialogue, because of your response to ivf, I don't believe that dhea is your greatest issue.
So sorry to hear about the BFN with your surrogate. Having gone through 3 donor egg IVFs, two fresh and one frozen, I would suggest trying again with your own eggs. Doctors talk about donor eggs as though they are the closest to a sure thing reproductive technology can get. I know a few people who still have no success with donor eggs, even donor eggs AND a surrogate.
Which is why this thread is so important. Our collective sharing of knowledge has been incredible!
I must admit I took DHEA for about 4 weeks (50mg) and had such terrible hair loss I had to stop. The hair loss was starting to affect my self-esteem. I'm wondering if I should start DHEA around day 15 and take it until the end of my cycle?
If you remember, I have POF (premature ovarian failure) and my FSH was in the 120-130 range. Hopefully that provides comfort to those of you whose FSH is 8 or 9! :) I had the high FSH starting around the age of 31. My latest blood work (from my DHEA time) showed my FSH at 89. Some success, so I'm thinking of taking DHEA again, but maybe with estrogen and progesterone too, so I can bring on AF? I read on a POF support website that estrogen in a very low dose (0.5mg) will not interfere with ovulation, and anything above that dosage will prevent ovulation (which is how the birth control pill works). This information was posted by a RE and POF expert. So, should I take 0.5mg of estrace from days 1-15, then DHEA starting on day 15, and progesterone starting on day 21? Will the estrace somehow interact with the DHEA?
Thanks, Anita, or to anyone, for the advice on this issue.
Just for clarification - I've never used donor eggs. Just tried a gestational surrogate last month...but they were my own eggs. My eggs are great - I'm pretty sure I have more deep seeded problems that I haven't even finished researcvhing for myself.
If I were you Laura, the DEA is certainly working based on the numbers and you are the prime type for DHEA. I would go back on and stay on it throughout along with the estrace supplement. Sounds very good to me.
Sorry Laura - I think I was in a hurry with that last post and misunderstood your comments that you yourself had gone through egg donors. So sorry....that's what I get for being rushed. But thanks so much for your consoling and encouragement. We're still not sure what we're going to do and are currently waiting on blood tests. We have since learned that I have antiphospholipid antibodies which can impede implantation and cause miscarriages. So we went ahead with all the other tests for unexplained infertility.
We should have results next week and I have a phone consult with a Dr. Coulam who I'm understanding is the expert in this area.
BTW - I'd go ahead with the progesterone too I would think because that mimicks the natural cycle and many women with normal cycles taking to supplement low levels.
Hope you're well and glad your still trying. Hopefully we will all get there some time soon. ;)
Hey I just wanted to say thanks for all the info you posted. I did read the links you provided on Vitamin D and am now adding Vit D to my supps. That research was really a great find. Ironically we had just picked up some 5-HTP the week before your post. I'm not quite sold on Seratonin being converted to Estrogen (am I understanding you correctly?) but Seratonin is a happy thing and I added it for that too. ;)
Hope you're well....happy labor day.
I am still kind of startled by the info you posted (the link on the anticardiolipid antibodies) for me yesterday. Strangely enough I feel kind of scared now that there is a possible explanation for all that we have gone thru. I am going to seek a consultation with Dr. Coulam ASAP.
Do you know more about the immunoglobulins? I was trying to research some yesterday but wasn't finding a lot of illuminating stuff...
Once again (i feel like a broken record but...) Thank you so very much!!!
ok, all the best.
Hey babe - its really good to hear from you. I thought the info might be upsetting and was anxious to know you're ok.
The wicked irony is that I am in your same boat - or so it appears so far. I thought my bloodwork said high antiphospholipids, but after reading last night and learning more I checked the bloodwork again and its Anticardiolipin Ab, IgM that's high and Anticardiolipin IgG is low.
There's still alot more to learn but I found this very illuminating about immunogobulins.
An immunoglobulins test is done to measure the level of immunoglobulins, also known as antibodies, in your blood.
The five major types of antibodies are:
• IgA. IgA antibodies are found in areas of the body such the nose, breathing passages, digestive tract, ears, eyes, and vagina. IgA antibodies protect body surfaces that are exposed to outside foreign substances. This type of antibody is also found in saliva and tears. About 10% to 15% of the antibodies present in the body are IgA antibodies. A small number of people do not make IgA antibodies.
• IgG. IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).
• IgM. IgM antibodies are the largest antibody. They are found in blood and lymph fluid and are the first type of antibody made in response to an infection. They also cause other immune system cells to destroy foreign substances. IgM antibodies are about 5% to 10% of all the antibodies in the body.
• IgE. IgE antibodies are found in the lungs, skin, and mucous membranes. They cause the body to react against foreign substances such as pollen, fungus spores, and animal dander. They may occur in allergic reactions to milk, some medicines, and some poisons. IgE antibody levels are often high in people with allergies.
• IgD. IgD antibodies are found in small amounts in the tissues that line the belly or chest. How they work is not clear.
The levels of each type of antibody can give your doctor information about the cause of a medical problem.
Normal values may vary from lab to lab. The results listed below are normal values for adults. Children have different values than adults. Results are ready in 1 to 2 days.
milligrams per deciliter (mg/dL)
grams per liter (g/L)
IgA 85–385 0.85–3.85
IgG 565–1765 5.65–17.65
IgM 55–375 0.55–3.75
IgD Less than 8 5–30 micrograms per liter (µg/L)
IgE 10-1421 µg/L
• IgA. High levels of IgA may mean monoclonal gammopathy of unknown significance (MGUS) or multiple myeloma is present. Levels of IgA also get higher in some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE), and in liver diseases, such as cirrhosis and long-term (chronic) hepatitis.
• IgG. High levels of IgG may mean a long-term (chronic) infection, such as AIDS, is present. Levels of IgG also get higher in IgG multiple myeloma, long-term hepatitis, and multiple sclerosis (MS). In multiple myeloma, tumor cells make only one type of IgG antibody (monoclonal); the other conditions cause an increase in many types of IgG antibodies (polyclonal).
• IgM. High levels of IgM can mean macroglobulinemia, early viral hepatitis, mononucleosis, rheumatoid arthritis, kidney damage (nephrotic syndrome), or a parasite infection is present. Because IgM antibodies are the type that form when an infection occurs for the first time, high levels of IgM can mean a new infection is present. High levels of IgM in a newborn mean that the baby has an infection that started in the uterus before delivery.
• IgD. How IgD works in the immune system is not clear. A high level may mean IgD multiple myeloma. IgD multiple myeloma is much less common than IgA or IgG multiple myeloma.
• IgE. A high level of IgE can mean a parasite infection is present. Also, high levels of IgE are found in people who have allergic reactions, asthma, atopic dermatitis, some types of cancer, and certain autoimmune diseases. In rare cases, a high level of IgE may mean IgE multiple myeloma.
• IgA. Low levels of IgA occur in some types of leukemia, kidney damage (nephrotic syndrome), a problem with the intestines (enteropathy), and a rare inherited disease that affects muscle coordination (ataxia-telangiectasia). Some people are born with low or absent levels of IgA antibodies. This increases their chances of developing an autoimmune disease.
• IgG. Low levels of IgG occur in macroglobulinemia. In this disease, the high levels of IgM antibodies stop the growth of cells that make IgG. Other conditions that can cause low levels of IgG include some types of leukemia and a type of kidney damage (nephrotic syndrome). In rare cases, some people are born with a lack of IgG antibodies. These people are more likely to develop infections.
• IgM. Low levels of IgM occur in multiple myeloma, some types of leukemia, and in some inherited types of immune diseases.
• IgE. Low levels of IgE can occur in a rare inherited disease that affects muscle coordination (ataxia-telangiectasia).
What To Think About
• Immunoglobulins are made specific to different illnesses. For example, the IgM antibody for mononucleosis is different than the IgM for herpes. For this reason, a doctor can look for an immunoglobulin to a specific illness to help diagnose that illness.
• Different antibodies can be used to help a doctor tell the difference between a new and past infection. For example, IgM antibodies for mononucleosis with or without IgG antibodies means a new mono infection. IgG antibodies without IgM means a past mono infection.
• People with very low immunoglobulin levels, especially IgA, IgG, and IgM, have a higher chance of developing an infection.
• A very small number of people cannot make IgA and have a higher chance of developing a potentially life-threatening reaction to a blood transfusion.
• An immunoglobulin test is often done when the results of a blood protein electrophoresis or total blood protein test are abnormal. For more information, see the medical tests Serum Protein Electrophoresis (SPE) and Total Serum Protein.
Anti-cardiolipin antibodies come can be classified in two ways.
• As IgM, IgG or IgA
• As β2-glycoprotein dependent or independent
 Apolipoprotein H involvement
β2-glycoprotein I has been identified as Apolipoprotein H and is required for the recognition of ACA in autoimmune disease. Only a subset of autoimmune anti-cardiolipin antibodies bind Apo-H, these anti-apolipoprotein antibodies are associated with increased thrombosis.
Apolipoprotein H (Apo-H), previously known as (β2-glycoprotein I, beta-2 glycoprotein I), is a multifunctional apolipoprotein. One of its functions is to bind cardiolipin. When bound the structure of cardiolipin and Apo-H both undergo large changes in structure. Within the structure of Apo-H is a stretch of positively charged amino acids, (protein sequence positions 282-287) Lys-Asn-Lys-Glu-Lys-Lys, are involved in phospholipid binding (See image on right).
Apo-H has a complex involvement in agglutination, it appears to alter ADP mediated agglutenation of platlets. Normally Apo-H assumes an anti-coagulation activity in serum (by inhibiting coagulation factors), however changes in blood factors can result of a reversal of that activity.
Gotta run and will check back in tonight.
Hang in there - many hugs over IP.
Wow!! i am still trying to digest and understand all of this. Let me see if I got it straight. Immunoglobulins are what is measured in the blood for the anticardiolipin Ab, in fact they are the antibodies, correct? If i did not misunderstand, you said in a previous post that this (immunoglobulins) is what was used for treating women who are positive for Anticardiolipin Ab, however that is not what I am understanding as i am reading about this. I am getting more of what you had mentioned before (on yet another previous post) which is that Anticardiolipin Ab are most commonly treated with heparin to counter the coagulating effects.
The whole thing is kind of scary, sclerosis and Lupus are not exactly a beach party. Im sure that other things are probably present in order to make these diagnosis, but it doesn't sound that benign. What is your take on how to establish the severity of these values? I haven't been able to find anything that speaks to this.
What is your opinion in regards to the association with Serotonin? in the link you posted they note that these particular immunoglobulins (apolipoprotein H) inhibit the release of Serotonin by the platelets.... Do you think that it can then cause depression? Just wondering...
Anyways, i'm hanging in here! We will fight this fight together, at least we can try to make sense of things...
thanks, thanks and more thanks...
all the best.
So glad you're reading up on this too. It really helps me to be in this with someone who's as interested in the gory details as I. Definitely - we'll figure this out and fight together. (tear)
Here are the answers to some of the questions. I've been reading half of yesterday and today so far. There's so much to learn in order to really understand this stuff and be able to infer any other impacts/effects. I'm starting with the very basics of the mitochondrion as this issue is found in the mitochondrion outer membrane. One thing appears is that there is some genetic component but also appears to be environmental and even virus related. And there are several types of Antiphospholipid Syndrome which is the bucket we appear to be falling into.
Immunoglobulins are the antibodies, yes. Same thing.
For example, Cardiolipin Ab are Cardiolipin Antibodies.
Autoantibodies (the antiantibodies) are what they are measuring.
For example, anticardiolipin antibodies (aCL antibodies) [attack cardiolipin antibodies??] at too high a level reflect negative function.
Yes – aCL antibodies are treated with heparin to impede the coagulating effects, and heparin is inexpensive.
Immunoglobulins also, however, have a modulating effect on aCL antibodies, but I don’t know if they know why yet….still more reading to do. This treatment, from what I’ve heard, is expensive and somewhat debated. The link below describes 3 possible ways it helps: The theory is that these intravenous immunoglobulins (IVIF) may
• by binding to aCL antibodies resulting in neutralizing their effects;
• by binding and downregulating receptors that would use them (B-cell
• by binding to receptors of other cells that regulate lymphokine production
thereby decreasing activation B cells which produce autoantibodies.
My frozen blood samples for Repromedix didn't make the travel to the east coast last week so I'm headed in for redo. Sometimes I feel like a stuck pig. (haha)
Hope you had some good fun this weekend!
Hug over IP
Hi Laura - your post really made me think about the hair loss issue since so many here have reported it. In thinking about Chups issue of not getting increased Testosterone I thought, well, this stuff converts to other things along the way and Testosterone itself can convert to other forms. And then ... bammo...DHT (dihydrotestosterone) is associated with hair loss. So I looked it up and ... bammo...found something that might be useful. A natural DHT inhibitor.
Here's the link. I'm interested in what you think and would love to hear from anyone else here who will check this stuff out. Sorry I didn't think of this or look into it before. Its like all this information just swirls around like a soup in my head and luckily sometimes the right related info collides.
here's the link
You're such a trooper Laura. I'm so eager to see how things go and want to see them go well for you.
All the best my dear.
Wanted to post some test results I just had done on CD3 to get my own baselines for reference. I have been taking DHEA for seven weeks at 50mg in AM and 25mg in PM. I have also been doing acupuncture/herbs, wheatgrass and a bunch of other supplements.
sorry, I didn't mean to hit submit - let me try again...
FSH 8.9 mIU/mL (was 11.5 in beginning of June) yeah
Estradiol 14.5 pg/mL (was 28 beginning of June) yeah
LH 5.0 mIU/mL
TSH 3.591 uIU/mL
T4 5.9 ng/dl
Progesterone 0.8 ng/mL
Total Testosterone 49.2 ng/dL
Total Free Testosterone 7.8 pg/mL
Free Testosterone % 1.6 %
DHEAS 236 ug/dL
AMH 0.53 ng/mL
unfortunately, FSH and E2 were the only ones I had done previously. All my results were in normal range with the exception of my Total Free Testosterone which was a bit high. I am thrilled with the results and I guess I just need to keep up all that I have been doing.
I thought this might be some more encouragement for all of you, it certainly has encouraged me seeing numbers improve.
I have been following posts but been real busy at work these past days hope all of you are doing great after the long weekend.
And if any of you have any input on the numbers I'd love to hear it.
I am posting in the UK, I hope you dont mind me joining you, I have been diagnosed as DOR/ POF as I have very high FSH (highest 42 - lowest 14) and missed 5 periods last year (they are back and ok now!), I have been told that Donor eggs is the only way forward but I am determined to try with my own eggs. I did one round of IVF in June but did not respond to the Menopur (450) so my tx was cancelled and I was told to try taking DHEA for 4 months then trying again. I have been taking DHEA (bog standard from Biovea) for 2 months and have suffered no ill effects although I am concerned that I may not ovulate this month (now CD18 and it has not happened - mind you I doubt I ovulate each month anyway as my ovaries appear to be very dysfunctional). I just wondered if anyone had had any success with such high fsh?? I would appreciate any pearls of wisdom you girls are able to share with me! Ally
betsyj - hey your numbers look really great! congradulations! Will you do another test next month? hoping your T number goes up a bit more to like 70 - 80 or so by the time of your ivf. when are you planning to cycle?
Ally - welcome! there's another gal here, lauralovescats, who's brought her dhea from FSH fom 140 to 89 or so and she posted a link to a study where POF women on dhea got pregnant. Just hunt back over the first 200 posts and you should find her... do CTRL F to search and type in lauralovescats. makes sifting through this way easier. Holler if you don't find it and I'll repost it if Laura doesn't come on here first and start chatting with you herself. Laura??
BTW - how much are you taking? For cases like yours it seems a little more than others normally take would be a good thing.
Chups - I do worry a little about what all this means for our health. But both my grandparents on both sides lived into their 80s (mothers that is) so it seems the greatest impact for us really is in fertility. My Dad had deep leg thrombosis years ago, the most common result of our ailment in men, but he's ok now and takes cumadin. He's 72. I think we're ok and will know alot more when the more thorough blood work comes back. My frzen samples didn't make the transport so their drawing 'again' tomorrow. What bothers me most is if this issue is truely treatable or even if its truely not treatable and we've been spent $$, but more importantly time and so much emotion that was preventable. I guess we'll just have to see. Did you get in with Coulam yet?
Hiya - thanks for your response I will dig out that study - think it could be the one from the clinic in Greece http://www.neogenesis.gr/modules.php?name=Content&pa=showpage&pid=70? I was taking 75mg but cut down to 50mg as my bloods showed slightly over normal levels of DHEA and I appear to have stopped ovulating (although not sure about that because as I have such high fsh doubt I ovuate each month anyway) I am still waiting for my testoserone results. Very interesting that Laura improved her FSH so much.
I've had some really strange results this week and don't know what to make of them. I had my appointment on Monday, CD 11. The doctor did an ultrasound and could find NO follicles. This is on 225 mg Gonal F, by the way. Not a single one. I always ovulate just fine--confirmed by blood tests and charts. anyway, he saw nothing. They drew blood and he said that he wanted to see the results before confirming that the stimulation did not work. The next day he said that my hormone profile looked like that of a thirty-year-old. I'm 43. Yea, DHEA! He said that the bloodwork showed that I would have ovulated during the night. My husband and I did our "work" the evening of my appointment just for kicks and the doc said to get busy again but that we likely missed the chance. He had not been expecting ovulation that night obviously!
I am due for an ultrsound next week--not sure for what since my hubby set that up with him. And now, I still have sore ovaries (on CD14) as I did from CD 8 on. My temperature has still not gone up. My uterus feels heavy and full. Fibroid growing?? Weird. I have no idea if I really did ovulate or not. Maybe I just have cysts this cycle that hurt from the Gonal F but there has not actually been ovulation sinced my temperature has not gone up. But again, the doctor saw nothing on the ovaries.
On that note, here is another strange thing. Twice in the last year my Gyn has said that there were no follicles and I ovulated. The first time was on CD 10. She said the ovaries were small and there was nothing going on and I would not ovulate for 10 days or so. I was sceptical since my cycle is always perfect. On the 14th day, my temerature went up and my chart showed I ovulated on the 13th day. AND I got pregnant that cycle! (Misscarried at 10th week.) So, I did ovulate even through she saw no follicles at all. This happened again later. She said ovulation was way off and there it was on time per my chart, just like my RE said. He did explain that if it is right near ovulation, the follicles cannot be seen. Anyone ever heard of that? Makes no sense to me.
But I FEEL like the stim protocol worked and my ovaries are not very happy. Should they not have calmed down after ovulation? And why is my temperature still low when doc said I would have ovulated the night of CD 11-12?
And if any one else has had this ovary pain after stim, how long did it take to go away? Did you get cysts with no ovulation?
Anyone else ever ovulated after the doc said they didn't see any follicles at all??
Anitasto--very glad to hear you are on Vit D. Maybe it will help a bit.
I wanted to add--I finished the Gonal F injections on Sunday. On Tuesday, I started getting really sore and swollen breasts. They are still that way--even worse now. Did this ever happen to anyone else that once you were finished with Gonal F, you got real sore? Any ideas why?
Some day you'll have to share the creative process of your screenname with us. ;) I always start to type RobertsMama and then have to retype Robster and it makes me think of Robbers. Is you're real name Jane? (haha)
OK - IF you ovulated OR are taking projesterone supplements especially then I had very very sore breasts and most women I knew had that with progesterone. That one is, as I understand, directly related to progesterone. So if you're not taking that sup., it's a sign for the ovulation. But why your temp didn't go up is beyond me. And I trust it has always gone up in the past. Did you use an OPK? Those things have been very helpful for me to feel sure of ovulation. Also - I started ovulating earlier by quite a few days on DHEA....like even as early as day 8 if memory serves. So what you're dealing with all sounds normal for dhea except the temp. Will be very interested to hear how things go! Keep up posted ok?
Oh - my ovary stays sore for a while after ovulation while the corpus lutem produces progesterone. At least that's what I've interpreted from the soreness.
Cheers Babe - and Baby Dust!!!! It would be so great to have another success in here! (no pressure) ;)
Hey Ally - you'll find in other posts here that just about all of us on DHEA had high/higher than what labs consider normal/ DHEA and DHEA-S levels. If I were you I'd go back up to 75mg...don't worry about the DHEA. What's most important in my experience is the Testosterone. What was your baseline hormones?
Hi girls - thanks for helping me out - I just got my free testosterone levels back and they are well within the normal range 0.54 pg/ml (Normal range 0.0 - 2.57), although did the test at 7pm so maybe should have been done in the morning? My DHEA-S was *12.3 umol/L (Normal range 0.26 - 11.0) But I am now worried - should they have tested DHEA and DHEA-S? I think I will carry on with the 75mg as my testosterone is ok, I was worried that it was high and interfering with my ovulation. When you say what were my baseline hormones do you mean before I started supplementing? I am not sure about my testosterone but I did an adrenal stress test (saliva) and my DHEA was was 0.47 nmol/L (dont know how to convert to umol/L scale!) Oh this is such a minefield it is so difficult to know what to do for the best!!
Sorry I have never known if I have ovulated after very low/ no antral follicle counts.
Anitasto, my name is from my little boy, Robbie. We called him The Robster, since he is so sassy!
I don't start progesterone until AFTER my temperature has gone up, so it couldn't be that. And I typically have ovary pain until ovulation has finished. Then it disappears. This would be a first time where I would have ovulated and the pain just continued. Strange. I have never gotten sore breasts at ovulation or even before and even when they get sore later in the cycle, it is certainly nothing like this! Strange. I did not use an OPK this time. I have never had much luck with them anyway. Never seem to get a reading, even when I got pregnant! Who knows.
Anyway, my temerperature went way up today. So, I'm guessing ovulation was yesterday, day 14. Hubby and I were probably too early with our efforts, then, based on what the doctor said about ovulation happening the night of the 11th day. Oh well. Another month to try again, I guess. More drugs to buy. More injections.
Has anyone ever had a doctor see no follicles but then ovulate and/or get pregnant? Any theories on this? Why would follicles not be visible just prior to ovulation?
I am now back down to 50 MG DHEA in the mornings for the next two weeks. I have been on it two months now. We'll see what happens.
OK, how about this theory. If one has multiple eggs after Gonal F treatment, could they release over a period of a couple days if no LH trigger shot is used? Could that extended process prevent the temperature from going up until it was complete??
I wanted to post a quickie from my consult with Dr. Coulam this morning ....her input has implications for any of us with multiple miscarriages or implantation failure.
Essentially anticardiolipin antibodies attack the outermembrane of a cell's inner energy and lifecontroller called mitochondria damaging the mitochondria's outer membrane so that its inner energy pack leaks out....this leads to the cell's death.
She said when anticardiolipin antibodies were added to the soup in a petri dish with embryos, the anticardiolipin antibodies destroyed the embryos in a dose dependent fashion.
I asked her if anticardiolipin antibodies were associated with heart defects and said...'oh absolutely'.
Treatment she said is immunoglobulin via IV called IVIG (I presume once before and once after treatment) and up to 4 IVIG treatments dependending on bloodwork. She said the Heparin is used only but immediately after positive pregnancy result and the clotting elements effect the fetus only after several weeks of pregnancy. She gave pretty detailed but quick explaination of this which I didn't quite follow and was different than I had previousy understood but ... in a nutshell.. the anticardiolipins are the first killer and the blood clots are the second.
Robster - I'll respond to your post more later but I do follow your thinking and it seems plausible.
I'm kinda wreeling. I don't know what we're gonna do!
But right now we're going for a bike ride as DH has the day off. At least he's here to chat with. He says he's "OVER IT". Let's adopt.
I just don't want to have any regrets down the road. Such a hard decision... uhg.
Interesting information from your doc and it is good for all of us to know. This would explain some of the very early miscarriages women have, I suppose. But I think that none of this information really explains why your healthy little embies didn't develop in a surrogate mom. She likely did not have the antibodies. That leads me to think there was a problem with the genetic material causing the embies to stop developing properly at a very early stage. Clearly with my 10th-week miscarriages and many months of a big fat nothing, my eggs have these problems, too. So, maybe the DHEA and Vit D will improve that development. I know you said you had been on DHEA for a long time already,however, and your testerone is still low, so that could not be the problem.
I understand about you not wanting to have regrets. You really have been through a nightmare. Your husband is terrific if he is still hanging in there! Maybe you could promise each other that you give it two more tries with the antibody treatment, this time. And if that doesn't work out, you will not spend any more money and will move on.
If you do decide you have had enough, you can always keep up the DHEA and a miracle might happen later. I know folks who have adopted and promptly fallen pregnant and consider BOTH kids to be such a blessing, although I suppose they did not have the antibody problem. (Has this been confirmed for you? I might have missed that in your earlier postings.) But if you do decide on adoption, I expect you will be happy to finally be moving on and will have a lot of peace of mind once you know that you really have tried everything.
I've been extremely busy with only a little time to read the posts. I do check in everyday...
I read your post from yesterday. I am also consulting with Dr.Coulam in two weeks. I figure she will have a similar take on my story, given that all arrows seem to be pointing in the same direction. Which I guess is a good thing after all... It is very interesting but slightly scary... From what I have read IVIG is kind of hard core stuff, wouldn't you agree? It doesn't seem as benign as DHEA... I can see how it must be hard to decide what to do now that a new avenue of possibility seems to be open for you guys. We are in a similar position as well.
Do you know if people have used the IVIG trying to get pregnant naturally, or is this something that is only used in conjunction with IVF? Something else, Natural Killer cells are a different thing than Anticardiolipin Ab, correct? I ask because I still want to make sure I am getting everything straight. In March My IVF team tested me for Natural Killer cells and I came out negative, then in June I came out positive for one of the factors in Anticarlipin Ab panel... Just double checking... Anyway I am going to try to get new BL next week before I speak with DR. Coulam...
ok will keep u posted... In the mean time stay well.
all good things,