Struggling with hormonal imbalance for the past year

by Jesse
(Charlottesville)

Around October of last year I really began to notice some changes going on in my body, and after seeing several specialists to treat various issues that seemed unrelated (and getting very little help out of any of them) I came to the conclusion that what was going on was hormonal changes causing my issues. Let me note that I am 46 years old and had an ovary removed when I was in my early 30s (removed due to a chocolate cyst from endometriosis). At the time I was told that would have no bearing on my going into menopause early and that the one I had should have adjusted and it quite possibly doesnt have anything to do with my current issues - just wanted to note it. I noticed first (last Oct of 2011) that my hair was thinning. I have very long thick hair that has always shed, but I could tell that it was changing - the texture and that it was getting thinner - particularly around the front, same place a male would thin. My dermatologist was really no help. She told me go home and count my hairs falling and come back. Well the amount of hair falling wasn't really any more than usual it just wasn't coming back in like it used to and seemed possibly being replaced by miniaturized hairs. I still have a good amount of hair now only because I had so much excess but I fear that in due time I won't be the only one who notices. I also just began to feel really 'bad' for lack of a better word. Just not like myself. I started looking older when I looked in the mirror. Feeling older. This all just started around last October and where most might not notice, but I did. I am very in tune with my body and health. I have always had large pores from acne as a teen, but this past year it has gotten VERY noticeable and very distressing as it looks awful. I had serious stomach disturbances which felt like an ulcer, and I was treated with Nexium. I have always had a tad bit of cellulite on belly and thighs, but during this time I noticed it just quadrupled over my thighs, legs, even CALVES, arms...its just the worst case of cellulite and even though its harmless, its hideous. I know that estrogen receptors can increase in size and cause or add to this issue and I feel that is exactly what happened. I can't get any doctor to speak to me clearly about hormones - they are horrifically unsympathetic and they tell me that if I am perimenopausal all they can do is give me synthetic hormone treatments and then dismiss me. There has to be something better than this. The mood swings, endometriosis has come back with a vengenance and one of the worst symptoms is SCALP PAIN. No one can tell me anything about why my scalp has been hurting off on and for almost a year. It doesn't stay in one place - it moves around, and usually during this time is when I also see hair loss. I have seen an endocrinologist and a gynocologist and they look at me like deer in headlights when I pleasd with them to help me with this horrible scalp pain. It feels sore in certain places like a tight ponytail has been in place (only it hasn't) and it will move to different areas on different days. I have read that scalp pain can be present due to hormonal issues and hair loss. That also leads me to believe I might be fighting a hormone issue. I just seem too young to be going through such a horrific perimenopause or full blown menopause. My mother was 52 when she started through this and I am only 46. I know that isn't terribly young for it, but I am just going through hell with these symptoms. I feel dead inside, no joy - life just isn't feeling like it was a year and a half ago.

I had my hormones checked by my gyno and they didn't bother to check progesterone levels even when I asked, She said 'we don't normally check progesterone" to which that point I got very irritated and said you know I am estrogen dominant (hence my years of fighting endometriosis) why wouldn't it behoove anyone to check my progesterone so that I can get a feel for the ratio of prog to estg? I just get blank stares out of docs when I am trying to do my own due diligence to feel normal again. I feel this might be a progesterone issue (as in not enough), but I am not sure.

Something important to note is that in 2004 I was fitted with a Mirena IUD. Now I know you probably will say those things are horrible and all my problem, however, after the first 8 months or so of getting it my endometriosis cleared up (I was in remission for over 5 years), my weight went back down to the weight of in my 20s, and I looked and felt as good as I did when I was 30. ANd this was when I was 38. It did so well for me I kept it 7 years instead of the usual 5 as I didn't want to screw anything up. At the end of the 7th year is when all these whacky things started to happen. I attributed it to the fact that there was no more progestins being secreted to counter any of my estrogen, so I was in full blown estrogen dominance once again. I gained weight, face broke out, hair started thinning, horrible thick periods that soaked those big hospital type pads....I waited about four or five months and couldn't take it anymore and went back for a new mirena IUD. I know that being eight years older now it may not do the great things it did for me before. I got the new one in April and I am still adjusting I guess as I have the scalp pain and hair loss frequently, and the stomach issues. I am not sure if the stomach issues are from the IUD or from all of the constant advil and advil PM i have been taking to treat my other issues. Since I have gotten the new Mirena IUD I dropped the six to seven lbs I gained almost immediately after the first one was taken out. Even my gyno said she clearly saw a correlation in my weight with the mirena and wihtout it (as in thinner with it). And this fluctuation occurred with no different eating or dieting on my part. Everything was the same. The weight came on, then simply went away after the IUD was inserted and in for a few months.

I don't know if all of this rambling is of any help to anyone to be able to be able to point me at least into a right direction for a solution. I am not sure that progesterone cream is my answer like it has been for some women as I tried it once before and bloated up like a balloon. I was also using it while on the mirena which was also secreting the synthetic progestin. I will add that my hormone lab tests BEFORE getting a new mirena suggested I was entering menopause. I might be crazy but I think my body was reacting to having it gone and that is why my FSH and TH was so high. Four months after mirena removal my FSH was 25.2 and LH was 30.7. Prior to removal at that seventh year I had it tested and i was only at 21.7 FSH and 16.9 LH. Having it removed definitely elevated FSH and LH significantly and in the eyes of my gyno I was in menopause. I had it rechecked after having the mirena in place for seven months this second time and it is now back to normal again with FSH at 9.39 and LH is at 11.56. The time that I seemed to be entering menopause was the time frame where the mirena was completely removed and had been out for four months. ONce it was placed back in and I waited a couple of months the FSH and LH came back down to a very normal level for a non menopausal woman. They only checked my progesterone and total estrogen once and that was recently after having the mirena in for a few months. Total estrogen was at 314 pg/ml and progesterone was at 3.1 ng/ml. I have tried to find resources online to help me interpret these readings to see how out of sync this ratio of two hormones are but not having a lot of luck.

I know this is a lot, but if anyone has any advice on what steps I should take next to try to rectify some of this I would be grateful. I am terrified of losing more hair. The scalp pain makes me feel crazy as nothing stops it. I even got a steroid drops from my dermatologist that should have reduced inflammation of that was the cause and it did nothing. I know that mirena has a side effect of hair loss but I never lost any (hair never looked better) the five/six years I was on it. It wasn't until that seventh year when the hormones in it were clearly gone that the hair fall started. I have attributed this to my body adjusting to having the hormones in mirena for all those years and maybe it is now trying to 'right' itself back with hormone production. Or at least that is what I hope.

Has anyone experienced ANYTHING close to this, or have any suggestions of what I might try next to try to piece this puzzle together and get my life back? I have been so obsessed with all of this since it began because this is the first time in my life I have just not felt healthy or like myself - both physically and emotionally. I just feel like my emotions are either flat and I feel nothing, or I get very weepy very easy as anything can send me to tears. I know that is a sign of menopause but my current hormone reading does not suggest that is the case.

Thank you in advance to anyone who bothers to read all this and even more if anyone has a suggestion or two.

Comments for Struggling with hormonal imbalance for the past year

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Jan 08, 2013
hormonal issues for a year
by: Kathy

Hi I know exactly how you feel, same for me past year and since October don't see the same person anymore and to make matters worse i also suffer from Body Dysmprphic Disorder, depresion & social anxiety. My mother went through it at 51..thought I had a few more years left too no period since end of August and was put on syntheticss also which did not help only hinder. I feel i am too young also I am 47 but looking back there were problems at 46 although subtle then that I know after going through hell since August that these tiny things whih are now enormous were related to hormones..so I can empathize with you and the whole Dr blowoff, recent ovarian cysts and adenymosis imilar to endo too and the hair thing also...really long last year and now won't seem to grow and although not noticeably thinner it has changed.My body is changing too I look horrible compared to a year ago :( This is an awful period but don't dismay Wray will help you through this :) I am here to

kathy

Jan 09, 2013
hormonal issues for a year
by: Wray

Hi Kathy Bless you for this, especially coming from someone who's also struggling. Take care Wray

Jan 09, 2013
Struggling with hormonal imbalance for the past year
by: Wray

Hi Jesse Well you are definitely in Peri-menopause, as this starts 5-10 years before Menopause, the average age of this is 51. This is the age when I went into menopause, although my P-M symptoms started 10 years prior to it, i.e. I was 41. We do have a page on Hair Loss. It can be caused by many factors, although in P-M women it's more often than not excess testosterone, which appears the case with you, as you mention a male pattern. Interestingly you say you had Acne which is also caused by excess testosterone. Progesterone can help as it raises levels of SHBG (sex hormone binding globulin), see here, if bound to SHBG testosterone becomes inactive. The hair loss page also gives a list of nutrients which can help hair growth, one of the most important being vitamin D, please have a test done. For more info on vitamin D levels, test kits etc see the Vitamin D Council, GrassrootsHealth and Birmingham Hospital. Blood levels should be 70-100ng/ml (175-250nmol/L) and not the 30ng/ml (75nmol/L) most labs and doctors regard as adequate. The minimum daily dose should be 5000iu's per day, although recent research indicates it should be 10,000iu's per day, see here. Even now the reason for scalp pain or trichodynia is unknown, this is a Dec 2012 paper on it here. They do say that "Spontaneous and evoked pain existed only in scalp sites with hair cycle abnormalities", which appears the case with you. Vitamin D does help pain, so too does progesterone. Pain is caused by substance P, a nociceptive neuropeptide. Substance P suppresses progesterone, see here. Unless sufficient is used, see here. Continued below

Jan 09, 2013
Struggling with hormonal imbalance for the past year Part 2
by: Wray

Hi Jesse The paper saying "Accumulating evidence indicates that the neuropeptide substance P is predominantly involved in neurogenic inflammation and pain perception...... Intriguingly, decreased pain sensitivity is found to be associated with high plasma progesterone levels. We hypothesize that progesterone may attenuate nociception and associated inflammatory response." Oestrogen stimulates substance P, see here. Interestingly substance P is involved in inflammatory bowel diseases, see here. We do have a page on Endometriosis, I've found if pain is severe 500mg/day progesterone is needed. Like your experiences, I feel so frustrated with most doctors, why shouldn't they test progesterone. Are they all so ignorant that they really still believe it's only a 'progestational' hormone, i.e. only good for pregnancy? You might like to look through our page on Progesterone and Vitamin D, it would certainly be an eye opener to most doctors about the function of progesterone. You are right about the Mirena, it's one of my pet hates. It does not release progesterone as many women are lead to believe, but a progestin called levonorgestrel. This has been shown to lower progesterone levels, plus impeding the blood flow in the uterine arteries, see here and here. Levonorgestrel is derived from testosterone, so has androgenic properties. This is the prescribing information here, and please see here too. You might like to read these comments here from women who've used the Mirena. As you say, hair loss is one of them. Undoubtedly caused by the androgenic nature of the levonorgestrel. Although with you it appears to have only developed after the second one was fitted. I've found with women coming off any Contraceptive, be it combined or progestin only, symptoms can be intense. Continued below

Jan 09, 2013
Struggling with hormonal imbalance for the past year Part 3
by: Wray

Hi Jesse The ovaries can now start up again, having been suppressed for so long. But initially only testosterone and oestrogen are produced, it's many months before ovulation commences and progesterone is secreted. As is evidenced by your high FSH and LH, they are trying to encourage an egg to mature and ovulate. Which of course the doctors ascribe to menopause. So hair loss, skin problems etc would be worsened. FSH and LH have now dropped of course, because the ovaries have been suppressed again. Your P:E2 ratio is 10:1, when mine was tested my ratio was 5:1 and I was a basket case, so I'm not surprised you are suffering too. We've found from Saliva Tests we run that the ratio is best if it's 600:1 and over. We do have more info on progesterone on our page How to use progesterone cream. It would seem you are short of progesterone, not surprising considering the action of the Mirena. And short of vitamin D too, please have that test done. If you should consider progesterone, please make sure you use sufficient, too little stimulates oestrogen leading to Oestrogen Dominance. I normally recommend 100-200mg/day, but feel you would need at least 200mg/day if not more. Take care Wray

Jan 10, 2013
Thank you!!!!
by: Jesse

I would like to just say first off thank you so much Kathy and Wray for even reading that very lengthy post of mine. I know I crammed so much into it I wasn't sure that anyone would even read it much less even get to the core of what I was saying.

Kathy, I am sorry to hear you are going through the same thing. I do appreciate you posting - it somehow helps to hear from someone else going through it, if nothing else so I know i am not crazy and it is something that happens to women when the hormones start taking nose dives and hikes. I think I also suffer from a mild case of body dysmorphia (spelling??) as I tend to get very obsessed with my body and appearance, and I am sure my description of myself is probably way worse than reality because I always see things ten times worse than they are but I have been this way since I was a kid. STill yet, I know that my body and appearance just seemed to get so bad on just one year and I take care of myself very well so it is all just so appalling....and the health issues on top of it. I just feel like PLEASE let this ease up SOON!

Wray, thank you as well for taking the time to write those responses. You have given me some good information to sink into. Once I have time I want to really absorb your info as it makes sense what you said about my FSH and LH being so high after the mirena removal as my body was trying to ovulate, then went back down when it was once again suppressed. I am so leary of taking the mirena out as I had the best 7 years with it, and want so badly to get back to that again but fear I just might not react to it the same way this time around. I knew that was a possibility which is why I took so long to finally have the first one removed.

Thanks so much again to both of you, it was really great to see someone actually even read all that I posted! And Wray that must have taken a lot of time to give me all of that info. Very appreciated!

Jan 10, 2013
Vitamin D results
by: Jesse

Wray, I meant to add that I have had Vitamin D checked. My results were Vitamin D, 25-OH, Total - 38 ng/ml.

They tell me this is normal, however, it appears it is on the lower end of the range (30-100 ng/ml).

There is some other info on VItamin D on my test results that they didn't explain to me and I have no idea what it means. It reads:

Vitamin D 25-OH, D3-38 (ng/ml)
Vitamin D, 25-OH, D2--<4 (ng/ml)

I also had an elevated Calcium level reading of 10.2 and thought for sure I had a parathyroid issue as all of my symptoms fit and this level of blood calcium was a sure sign of parathyroidism. I went back, however, for a second and third test to make sure and it came back 9.2 and 9.5 respectively which was not indicative of a true parathyroid problem.

Jan 13, 2013
Thank you!!!!
by: Wray

Hi Jesse I'm glad the info helped, and of course Kathy telling her tale too, she's not in a good way. But has much courage to keep going and to help others too. It doesn't surprise me women have BDD, the emphasis we place on women to have a certain type of figure, face, skin etc is shocking. And when our hormones go awry, it only adds to the mental state. I understand your feelings about the Mirena, although of course for me it's the worst thing you could do. But as you felt fine on it, stick it out for a bit longer. You would have to use more progesterone to overcome the progestin of course. Your vitamin D is low according to the specialists, who believe it should be a minimum of 50ng/ml. We only start storing it when it reaches 40ng/ml. I try to keep mine between the 70-100ng/ml level, currently it's 92ng/ml. Although elevated calcium can be a parathyroid issue, a lack of vitamin K2 can also cause it. If parathyroid hormone is higher than normal, it can indicate vitamin D is too low. Vitamin K is a neglected vitamin, I think everyone assumes we all eat enough green leafy veggies. But looking at the processed foods eaten by many, I doubt we do. Vitamin K1 (phylloquinone) is found in green leaves, some then gets converted into K2 (menaquinone) by gut bacteria and various tissues. But many people have gut dysbiosis, with a lack of good bacteria, often because of antibiotics, Crohn's disease, coeliac disease, etc. A deficiency can also occur in people with a compromised liver, cystic fibrosis, or any inflammatory gut disease. Vitamin K2 is found in organ meats, egg yolks, and dairy products. Vitamin K2 has been found to reduce osteoporosis, calcification of arteries and cancer. Drugs which prevent coagulation block the action of vitamin K, conversely vitamin K2 can be given as an antidote for excess anti-coagulants. These are excellent articles here, here and here. Continued below

Jan 13, 2013
Thank you!!!! Part 2
by: Wray

Hi Jesse Vitamin K is one of the cofactors for vitamin D ensuring deposition of calcium in bones, and preventing it's deposition in arterial plaque. Excess free calcium in the blood results in calcified arteries and heart disease, see here, here, here, here and here. Dr Cannell recommends all the cofactors for vitamin D should be taken, magnesium, vitamin K2, boron and zinc, see here. This complex is one he recommends. So maybe you could try some if concerned about your calcium levels. They always test for both D3 and D2, hence your results .......
Vitamin D 25-OH, D3-38 (ng/ml)
Vitamin D, 25-OH, D2--<4 (ng/ml)

Take no notice of the D2, as it doesn't play a big part in our health, see here and here, here and here. Let us know how you get on. Take care Wray

Jan 18, 2013
cont'd
by: kathy

Hi me again. Thank-you for your reply and it sounds like you may also have this horrible disorder Body Dysmorphic ..good idea to research it and yes it usually presents in childhood/ adolescence and you may have done odd things if you think back to those years especially early teens. I did some odd stuff but was not actually diagnosed until 2006 . Some experts believe it is causeed by trauma like abuse and in some cases of a sexual nature. They are still researching this complex disorder as it is classified with anorexia and OCD. It is hard when you cannot see what others see as your perception is so distorted by the brain to the eye and no matter what people say..compliments etc.. or they do not see what you see you never believe because you actually see it ..flaws that are minor or not even real..hard to deal with..and no real cure I am even worse since October with changes i see/perceive and now I have rosacea which began early in 2012 only i did not know at the time..this makes it all the more traumatic. As far as Mirenea goes it can cause skin issues and i have been researching rosacea ..obsessed actually and that is one condition...just an FYI for you. I am here to help others and also get help and I am. Wray is indeed a blessing and a GODsend and we all learn from each other even Wray learns from us although she is so knowledgeable already I now realze she continues to learn through our pain and suffering.

Here for you
:)

Feb 04, 2013
cont'd
by: kathy

Hi jesse,
Just checking in to see how things are going for you ..better i hope? I would love to hear back from you at some point to see how you are getting on. I am continuing to struggle and it is hard sometimes as it seems a new problem/issue crops up every week...but hanging in there. We are very lucky women to have someone like Wray for support and guidance! :)

Kathy

Feb 06, 2013
cont'd
by: Wray

Hi Kathy Bless you!! Take care Wray

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