Got an appointment with a hormone specialist

[witzend]

I am 47 years old, and I have been suffering the sweats and sleep disturbances for years. Mood swings and irritability have been the norm. My BS o'meter is just plain set to ultra-sensitive. My sex drive is non-existent.

I have a genetic blood clotting disorder called Factor V Leiden. I had a pulmonary embolism in 1992. A lousy way to give up smoking, I might add. I have done tons of research on Hormone Replacement Therapy (HRT) and Factor V. Ten years ago, they would have told you to get onto blood thinners for the rest of your life no matter what else you did for your health. Now, the general consensus is that if you haven't had a clot in 10 years and you've only had one, your likelihood of having another is slim, and there is no reason for blood thinner treatment. Recent studies show that if you have Factor V, and you use transdermal HRT, your incidence of a clot only goes up to 4% from 2% if you don't have Factor V.

I can not get my doctor to listen to me that I have been going through this for 5 years, my periods show no sign of slowing down, and I can't stand my hair trigger temper. It's likely I have another 5 years to go. He upped my Wellbutrin, that didn't help. He will under no circumstances allow HRT because of the Factor V. I've sent him copies of studies. No go. He decides that maybe it's more PMS that is increasing to PMDD. So, why not try eliminating my periods with Depo Provera?

If I thought my irritability was bad before, I think that it's a miracle I haven't murdered someone in the past 8 weeks. Not to mention that I'm spotting half the time now. Sex drive remains the same. I have so little patience for husband and his shenanigans, we fight constantly. Last night he came up with this gem. "I was thinking about it today, and I realized that I don't do anything to make you happy."

DUH!

The first and last time he bought me anything was 2005. After I yelled at him that he has never bought me anything in the 19 years we had been married at the time. It was a two pound box of cheap chocolates. I don't eat sweets much, and if I do, it has to be something I like. I don't like cheap chocolates, and it's not like I have never mentioned that before. I was nice, though. I ate one then and there, then every day I'd take one or two and toss it down the disposal until they were gone.

So, anyhoo I feel more miserable than ever. And husband has had more opportunity than ever to do stupid little things that peeve me that would be ok once in a while but I can't handle it day in and day out anymore. He says "I know you think I do these things to disrespect you but..." OK, dear, in the same situation with anyone you work with do you do what you do to me? "No". Why not? "They'd probably fire me."

I look up side effects of Depo Provera. Irritability. UGH! I mean I know everyone has their ups and downs, but why try to cure woman of irritability with a grumpy shot? Another side effect can be musculoskeletal pain. I'm in chronic pain from my muscular dystrophy. WTH?

So, on Monday I have an appointment with an OB/GYN who specializes in HRT and has connections with hematologists. If they will treat my peremenopause with appropriate medications, more changes in my diet, and I am still super-witch, I'll bite the bullet and check myself into a mental hospital if that is what it takes. But I am so sick and tired of doctors that tell me that every physical ailment I have is cause by depression, and no matter what medical study I can show them that links my symptoms to conditions I have they find it easier call me a crazy liar! No wonder I seem irritable!

At the same time, I'm worried that I will run into the same barriers as I have before. Like we were saying in another thread, just because a doctor is supposed to be a specialist doesn't mean he doesn't have his head in his hoo-haw.

Wish me luck!

 

[TerryJ2]

Good luck! I hope this OBGYN is better than the others. No one wants to live like that.

 

[gcvmom]

Maybe something other than Wellbutrin could help?

I take a tricyclic, and every month I would invaribly become more irritable -- anything anyone said or did around me felt like claws down the back of my neck and would gladly bite the nearest head off For about the first five years on that medication, I also suffered form the sweats and going through cycles of not being able to sleep at night.

My psychiatrist told me to bump up my medications by 25mg for those couple of days that I was on edge, and it really did help for a while. That was several years and several family crises ago, and now I'm permanently at a higher dosage level I don't have the sweats anymore and I sleep much better, too.

 

[Lothlorien]

I'm wondering if a mood stabilizer like Depakote or the like might help with the severe mood swings. I hope the specialist can help. I'm kinda going through very similar symptoms, right now and I'm only 39. Keep us posted. I'd like to know how things go.

 

[Suz]

why try to cure woman of irritability with a grumpy shot?

Ain't that the truth!

After I had my hysterectomy I went through overnight menopause. It was intolerable- every woman's worst nightmare. At one point I was sitting in my GYN's office sobbing because I'd had a sexy dream about my Richard (Gere) the night before and I told Richard to leave me alone!

I tried all kinds of HRT and all kinds of doses over the next few years. I finally found that the lowest dose patch works the best for me. It doesn't eliminate all of the symptoms (I still get night sweats) but it makes life bearable.

You have my sympathies. I hope the new doctor comes up with a good combination for you.

Suz

 

[witzend]

I was on the lowest dose tricyclics years ago when I was going through all of that trauma with L's Dad and SM and there wasn't much else available. I'd take it at night and be a zombie until about 6:00 PM the next day, so I'd be alert about 3 hours a day. Due to reports of muscle tissue breakdown and my muscular dystrophy, I just can not afford to take that chance.

I don't mind entertaining the idea that I am truly looney toons and that all of my aches pains and troubles are in my head. But not until someone can prove to me that sweats, waking up 8 times a night, screaming at or walking away from anyone who looks at me cross-eyed, menstruating every other week with severe cramps and diarrhea, and going through PMS the rest of the time has nothing to do with menopause.

Hopefully the new doctor will have some ideas that I haven't tried yet. Because if he tells me "you're just depressed, you should get out more" I'll knee him but good.

 

[Star*]

Witz,

I took Depo shots after Dude was born. They made me VERY irritable. I could eat nails and spit them out nailing boards into concrete. VERY VERY MEAN. AND they made me gain weight over a period of 8 years. I did manage with diet and exercise to get it off - but still. Not a good thing for me.

As far as PMDD? I have it. Wellbutrin made me VERY VERY irritable. It also made Dude have the screaming meanies. I had great success with Paxil CR, but had to give it up for lent er I mean rent. I MEAN mortgage.

I have the midnight bbq and have been having great success with Nut Black Cohosh. You can take it 3 times a day. With you having MS - I have no clue what you're going through. I know lately when my feet swell up and my legs swell up and my body swells up and gets tight and I cant find my glasses and the friggin mouse on the computer came unplugged and I had to try to plug it back in without a light - couldn't see, had to get up find a flashlight, came back laid down, nearly couldn't get up again - then tried to see and because I AM OLD (screamed at the top of my lungs scaring the rats) I rolled back out, found my #()(*(+_#(( glasses, went back under the frigging desk only to break off the prongs in my mouse and be rendered computerless - jerked the moust out of the desk, rolled my fat, puffy self UP onto my knees and then pulled my FAT overweight self UP on a chair and then to my swollen feet I squeezed the mouse until My hands were going to explode and then took it outside, flung it over my head while yelling a Charlie Brown ARRRRRRRRrrrrrrrrrrrgh and let 'er rip.

This morning DF comes in from turning on the sprinklers and says ever so nicely "Honey, did you have a bad night?" and laughing at my self I looked him dead in the eye with "that" look and said meekly "No, NO why do you ask?" - he holds out the mouse and says "Well I know the rats can get out, but I had no idea the computer mouse could."

I FEEL YOUR PAIN GIRLFRIEND. I could (some days) pop kids ballons, steal their candy and eat small children for spite. And that would be on week 3 which is relatively mild.

Good luck with your hormones.
You deserve to be happy
Hugs
Star

 

[Hound dog]

Witz

I wish you all the luck in the world with the OB/hormone doctor.

I would've like to have said my insomnia, internal flame, and all had disappeared. I would have said it just a couple of weeks ago. But the wonderful internal flame has returned with a vengence. I haven't a clue why after 6 mos without it. I still haven't had even a hint of a period since last July.

I hope the doctor listens to you.

And all the docs (few) I've found that actually DO listen, wonder why I want to kiss and hug them! Even if there is nothing they can do, it's wonderful being truely listened to.

((hugs))

 

[mstang67chic]

Hope the hormone doctor can get things straight for you. I was in a temporary, drug-induced menopause for 6 months some years back. That was bad enough so I can't and don't want to imagine what it feels like after 5 years. (Course, halfway through it, husband, intelligent man that he is, mentioned that WE had to go through this again. Good thing the man is a fast healer.)

 

[WhymeMom?]

Hope you get some answers that work for you.....thanks for the medical education....I wasn't aware of factor V......still think most health conditions are a matter of what genes you were handed at birth......bummer, that we don't get to choose.......Good luck with the doctor and hope he/she listens to you! (Better yet "hears" what you are saying.....)

 

[Shari]

Good luck, Witz. I hope he can help.

I am either lucky enough not to have irritability (well, beyond difficult child induced) or lucky enough to not recognize it, but I tell you what, that non-stop period stuff is for the birds. That's enough to drive you crazy right there.

 

[witzend]

Thanks, all. I surprise myself a lot lately, because I actually feel pretty good about my life at this point in time. So I'm always shocked when I can't control my temper over the littlest things. I think husband is thrilled that I am going to a specialist! I guess we'll see next week!

 

[Abbey]

At one point I was sitting in my GYN's office sobbing because I'd had a sexy dream about my Richard (Gere) the night before and I told Richard to leave me alone!

Suz

OMG. I just fell off my chair.

Abbey

 

[Marguerite]

Witz, I've got a couple of ideas.

First, has anyone suggested testosterone to you? As women we tend to focus on the need for female hormones, but we're supposed to have a certain amount of testosterone too. if your hormone levels ACROSS THE BOARD are low, you might be a mess because simply increasing a few hormones is only making imbalance worse.

The OBGYN sounds like a good idea, but is there any chance of finding a good endocrinologist? Or failing that, will this OBGYN look at things like your pituitary function, or your hypothalamic function? Cortisol levels, for example, could be low.

husband has problems a bit like this. Our former GP (a genius, who is now specialising and therefore no longer available as a GP) found the problem, just as we were going on holidays. We were on a train heading south, mostly out of phone range, and the doctor was trying to contact us. he finally left a text message on my phone to ring him when we got to Melbourne. So we did, even though it was late at night by then. While husband drove our hire car the doctor gave me the list of hormone deficits over the phone - it was horrific. We were told to get to a GP along our route who was open, get that doctor to ring him and he would tell him what to prescribe. It had become medically urgent. It can get that bad - husband's cortisol levels were dangerously low, plus most of his other hormones were "out of whack". He's now on his own version of HRT and while on it, just about everything stays normal. It's been tricky to manage but he has a brilliant endocrinologist, who also happens to be the bloke who cured our genius GP of thyroid cancer.

About Depo - my best friend has been having Depo shots for contraception, for decades. Her daughter has had either Depo shots or implants. When the daughter lost a lot of weight (due to coeliac) you could see the implant under the skin of her upper arm.
My friend is in her mid-50s and commented last week that she still hasn't had a period even though she's about a year overdue for her shot. Could this be menopause, she asked. Lucky cow, I replied.

I could never use anything strong, hormonally. My body seems too reactive.

I hit 50 and hit menopause, almost to the day. My GP corrected me - peri-menopause, he said. It's a stage you go through for years sometimes, as your body slows down its reproductive functions. My sister in law went into peri-menopause very young, while still trying to have a family. She needed hormonal assistance to get pregnant.

Symptoms I've had to deal with - no hot flushes to speak of, no irritability. But periods that were dangerously heavy and that lasted for ten days or more, then after a few days' break, they started again. As I can't take iron-containing medications, not even iron in trace amounts, I was watching my haemoglobin levels drop measurably, every month. A few more months and it would have been a trip to hospital for a blood transfusion.

The doctor wanted to know HOW heavy, and when I described it, he thought I was exaggerating. So I did something slightly 'yucky' (but as a scientist, I felt it appropriate) - I weighed the output. I have cute little kitchen scales that I can tare (or zero) with a container on it; so I can weigh out flour into a jug, for example, by taring the scales with the jug, so it reads zero.

I tared my kitchen scales with a fresh tampon and a plastic bag. I then took out the fresh tampon, replaced it with the loaded tampon in the plastic bag, and weighed it. The weight difference was how much I had lost per tampon. I did the same with pads (I was using both, changing them every half hour). I also estimated any other incidental loss (sorry if this is grossing people out, I'm trying to be discreet here).

The point was, I was able to go back to the GP and give him a volume figure and confidently say, "I am losing 200 ml a day," knowing that 20 ml a day is considered normal. Over 8-9 days of this, I was losing a litre and a half (which translates to two and a quarter pints). Then a few days break and it would be on again. No wonder I was rapidly becoming anaemic. Blood loss quickly gets replaced with fluid (from the next glass of water you drink) but replacing the lost red blood cells takes longer.

I also was getting both panicky and cranky, feeling like I wasn't believed (until I did the measuring thing) and desperate to avoid a transfusion. So I used humour to help - I wrote a series of jokes along the lines of "You know you have heavy periods when..."

Such as "You know you have heavy periods when you finally understand why menopausal Meditteranean women wear black."

Or "You know you have heavy periods when your bathroom looks like the shower scene from Psycho".

I had a few embarrassing (but funny in hindsight) incidents because of it all - at a theatre party with five of us, I knew I wouldn't be able to get to the loo and back at intermission so I sat still and didn't dare move for the entire play. Afterwards I stayed sitting until the crowds had moved out sufficiently for me to make a bolt for the DISABLED loo (under those circumstances, you NEED the disabled loo). I locked myself in (having pre-warned husband, who is a darling) and cleaned up as fast as I could, hand-washing underwear and trousers (thank goodness I'd worn black trousers) and then standing there naked from the waist down while I was waving my now clean but wet clothing in front of the hand dryer (now you know why you need the disabled loo!). As it was, I still had security pounding on the door asking why I was taking so long. I estimate I was ready to move on after about 15-20 minutes. I was tempted to tell the security guard that I was operating an illegal Chinese laundry - the theatre was in Chinatown.
We had an hour's drive home. I sat in my seat in the car (on a waterproof sheet we use for wet swimsuits that husband 'forgot' to remove from my seat before I sat down - bless him) and didn't get out at any time on our journey home. Once home - same story. Make a bolt for the bathroom, and go through the strip-down, wash-off routine all over again. Amazingly, our friends didn't realise I had a problem (other than taking a long time in the loo). I told my best friend when I next saw her, she would have told me if she had realised.

If you have to deal with all that, you will be cranky and miserable. If you've got hormonal problems on top of all that - it's wrist-slashing time. If not your wrists, then somebody else's.

Witz, I hope this guy can help you. It's a big problem and very hard for some people to talk about it. It's not exactly something you can readily discuss over coffee!

Oh, one more thing - my OBGYN put me on HRT. It was like turning off a tap (no, really). Everything just stopped. I was doing great for two years, then my BiPolar (BP) went up. Over the next few months while doctors argued about what to do and t hey tried to put me on blood pressure medications, the BiPolar (BP) climbed higher. I finally asked, "Can I just go off the HRT and see what happens?"

So I did. I had to taper off, but although periods have occasionally made themselves known, none have been so heavy as they were. One or two came close though. But in general - it would be spotting every few months, for a day or two. In the last two years, the worst seems to have passed. Here's hoping.

All the best, Witz. Hope you get some help. This is no fun.

Marg

 

[witzend]

Marg, it's interesting you should mention an endocrinologist because that is the type of doctor hubby is seeing that recommended this particular OB/GYN for me because she specializes in hormone issues and would be willing to work with a hematologist to help me. I was kind of hoping that his endocrinologist would say "have her make an appointment with me" because he's very thorough and husband likes him.

The poor receptionist at the OB's office! I called and said "I'd like an appointment with Dr. So and So." She said she couldn't see me until June but Dr. This and That could see me Monday. I asked if Dr. T&T was a specialist in hormone replacement for women with blood clotting disorders. She says "Well, all of our doctors. are specialists." Yes dear, but is this one ready to work to properly prescribe hormones for someone with a blood clotting disorder?" She put me on the phone to the nurse, who seemed to have a clue, so I made the appointment. I have to admit, though, at my regular GP's office, if you get an appointment today or tomorrow with someone other than your regular doctor, it's because they're awful and they don't have any patients of their own!

I tell you, though, I kick and scream all the way to the annual pelvic exam. So much so that I do them every three years. I know that everyone thinks you're supposed to get them every year, but the American Cancer Society recommends you have them every year only for three years, and if they are normal and there is no history of cervical cancer in your family then you should get them every three years. GYNs always balk when I quote them chapter and verse on this, but they can't argue with it because they know I'm right. They can pay for their early retirement out of someone else's embarrassment and discomfort. I had one a few months ago, so they can forget it if they think I'm starting with a pelvic exam. They'll need to give me a medically necessary reason for it. They don't know me? Fine, order my records from my last exam from my doctor.

I do hope that this doctor will run some sort of hormone level on me. I asked my regular GP to do this and he told me that they mean nothing as far as where you are in menopause. He said that they vary day to day and unless you take them repeatedly to get a broad picture they won't mean a thing.

I'm not thrilled that this is a man. And of course there is my facial expression, or lack of facial expression, that makes me so nervous. When you don't know me, and I'm talking about a serious subject it's easy for Doctors, especially it seems, to jump the gun and diagnose depression. I mean, after all, I'm a middle aged woman on antidepressants, I'm not happy with something that every other woman in the world puts up with, I'm complaining about it and I didn't smile once. I always explain my muscle wasting right off the bat but I start off a little apprehensive. I have to set that aside.

But, I can tell you right now, the depo shots are off. I had my regular cycle the first four weeks, got my PMS right on time, spotted for 3 weeks while continuing my PMS bad enough to make me want to jump out of my skin, and now I've been bleeding for a week. No, doctor, we aren't going to try this for a year to see if we can get it to level out!

I'm hopeful. But not a lot...

 

[Marguerite]

Some specialists don't like to treat family members of patients. I had a brilliant immunologist who I wanted husband to see, but he refused on the grounds that it could be awkward for him. If a specialist also is really good, and as a result has almost full capacity caseload, then that can be another reason for them to refuse to take you on.

I'm wondering - have you asked if you can be contacted in the event of a cancellation? That way you can maybe get in sooner. And sometimes just asking, can get you squeezed in earlier.

I hear you about getting labelled as depression just because you don't smile - a young friend of ours has FSH muscular dystrophy, she was diagnosed when she was 3, her parents were told she would be lucky to live to her teens but would need a wheelchair well before then. When she was diagnosed she couldn't even lift her feet to step up from the road to the footpath. She needed to wear a helmet to protect her from falls, because she couldn't save herself if she lost her balance.
Now she's about 19 or 20, she's finished school, swims a lot, told her parents to sell her wheelchair because she doesn't need it, is on an exchange scholarship to Europe. She's into fashion design, makes a lot of her own clothes. She walks more than I do, has amazing stamina. But clearly still has FSH muscular dystrophy. I remember her not being able to smile, from very young. But now - she can get a tiny quirk to the corner of her mouth, if you know where to look. She's the only girl I know who can make easy child 2/difficult child 2 look chubby, just by standing next to her. An amazing, strong-willed person. Next time I see her I'll have to ask her whether people (especially doctors) mistake her "poker face" for depression. Mind you, I wouldn't want to be the doctor who patronised her in any way - this girl also has a caustic tongue and a biting wit. She'd metaphorically emasculate him in seconds.

Good luck with Dr T&T. Hopefully, if he's a total loser, husband's endocrinologist will step in for you. Or failing that, refer you to someone with intelligence and not just education.

Marg

 

[witzend]

Thanks, Marg! I have a good friend in Australia with FSH MD. He comes to the States every year or so on business, and there's a group of us that tries to get together. A very nice man. He's not walking, but he has his own business building bowling alleys, I think...

I'm not walking so much any more. I always tell everyone that I have one speed - slow. I can pull myself up a few stairs at a time, but not more. I get very winded very easily, as my muscles are pulling all the oxygen for very little movement. I don't know that I have ever met a person with FSH who is heavy. It's too hard to drag all of that weight around.

I love the description of the caustic tongue and biting wit. Hmmm, who does that remind me of?

 

[ML]

Witz I am going through it too. I wonder if you have tried the progesterone cream that you can buy at health food store? It might be worth a try. Also, I have a book I will send to you. Something like what your doctor doesn't tell you about menopause. I have a couple of them actually and if you pm your address I will send. Big hugs girlfriend xoxo ML

 

[TerryJ2]

The poor receptionist at the OB's office! I called and said "I'd like an appointment with Dr. So and So." She said she couldn't see me until June but Dr. This and That could see me Monday. I asked if Dr. T&T was a specialist in hormone replacement for women with blood clotting disorders. She says "Well, all of our doctors. are specialists." Yes dear, but is this one ready to work to properly prescribe hormones for someone with a blood clotting disorder?"

Very typical. The receptionists should be required to at least read the pamphlets at the front desk about the doctors they work for. It's like going into a restaurant and ordering from a waitress who hasn't memorized the menu. Grrrr.

 

[witzend]

I spent half of last night online, and joined a group for people with Factor V Leiden, the blood clotting disease. They steered me in the direction of "bioidentical hormones". There are several available that my insurance will pay for, and they come in varying strengths. They recommended that I do a saliva test and a blood test to check specific hormone levels.

I'm definitely going to have to write all of this stuff down, because my memory is playing tricks on me too. Except I keep forgetting to tell anyone that my memory is playing tricks on me...

Yikes!