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Nikki

Learning Not to Talk About w/d

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Nikki

Dalsaan...

 

Wow that is a good way to handle this. It's good for us too. I get tired of hearing myself complain.

 

Thanks.

 

Has anyone heard of the expression "If You Spot It, You've Got It". If I spot something in somone else, chances are I may be doing the same thing.

 

I was thinking about it this morning. I am seeing things in a friend that I don't like. I wrote them down to see if I do any of those things.

 

Repitition - talking about the same thing over & over again. And yes I do that. I talk about anxiety, not being content, money, and building a business and fear.

 

I talk about anxiety here every single day. Thank goodness I can, I am looking for answers and yes I need to vent my fears. It's all about fear.

 

Hugs

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Barbarannamated

I've learnt to explain rather than complain. It has made a difference to how people resond. They now ask me questions rather than change the subject and I feel less like a broken record

 

Dalsaan,

Perhaps you would explain how you explain. Throughout the forum we've touched on this and the general unacceptance by not only lay people, but also medical docs. Not understanding that years of insult by drug to neuroendocrine system changes every part of body.... drugs studied for only 8-10 weeks being taken for decades with unknown effects... it's not a matter of "just get drug out of body/halflife/detox". It doesnt have a name or labtest or film, docs don't understand/believe it exists beyond a few months so the denial factor is huge. I've read many writing about dealing with an invisible illness, but this is invisible and unrecognized/denied. I usually tell people I have endocrine failure (not untrue). I may tell select few that the antidepressants I was on for years were exacerbating it, but, in general, most people eho have not yet been harmed by medicine/legal drugs refuse to believe this could happen.

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Barbarannamated

Nikki,

I haven't heard that phrase, but I understand the concept. I think we tend to see ourselves in others. We may also gravitate to others who have similar struggles. I don't always like the mirror effect - "woe-is-me" isn't pretty. :(

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dalsaan

I tend to say I am in withdrawal, that my system had adapted to having medication having all kinds of effects on me for over 8 years and now it doesn't have that and it hasn't yet adapted back. I then say this is a black hole in terms of research and in explain why that's the case-that academic careers aren't built on curing discontinuation symptoms and drug companies don't make a fortune getting you off their product or convincing people that they should think again about taking them. I call this determined ignorance I then say that leaves it up to me to sort through and I only having two ways of doing that-by trial and error and/ or by reasoning (if this, maybe that). Eg if mirtazapine has been shown to decrease cortisol, maybe my body can't handle the return of cortisol functioning and that is contributing to insomnia, I'll try supplementing PS because that is supposed to moderate cortisol. I say this isnt a very exact science but it's all that I have got and I explain as I go along my latest understanding/thinking/experiment rather than just complaining about my symptoms. This of course is just my way of explaining and the truth as I see it.

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Nikki

Very concise and to the point. I tend to get dramatic :( Will leave out drama and the "poor me" in the explanation.

 

Thanks

 

PS...a friend in Brooklyn ;) responds to "How are your doing?" With....I'm doing.

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Barbarannamated

I'm doin'. Good response.

Dalsaan, perhaps because you are a social scientist, you carry more credibility? When I say what you say to most people - especially anything implying that legal drugs cause problems - they inevitably direct their attentions to my husband, an MD and also drugged, for "the real story". It is exasperating! He's slowly seeing the truth and tapered off of Effexor over about 6 weeks without too much distress (still has Vyvanse and benzos on board which may be breaking the fall). People don't realize that MDs aren't specialists in drugs unless they happen to have strong pharmacology background. I've worked with and studied pharmacology for a long time but he's the MD so people look to him for "the real story". Most also can't wrap their minds around legal drugs being harmful and still widely used. Does not fit their paradigm that government protects us. That IS unsettling.

Dalsaan, as a social scientist, you may find the writings of Cinephile (here on group) interesting.

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dalsaan

I'm not always believed and particularly because my own story has evolved. But in my own experience, people have been more willing to listen to explanation than complaints.

 

I think there are lots of things that make people doubt, the power of experts and the belief in govt as you mention, also a naive assumption that we know everything there is to know and that science is inherently good.,

 

It must be incredibly frustrating for people to defer to your husband in this situation. Some people are very comforted by perceived authourity. In my view, the deference stuff says much more about them than it does about you.

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annej

"The outer environment can be rude, crude and indifferent". Sometimes people behave hurtfully. Excuse them for the sake of your inner peace.

 

-Abraham Low, M.DRecovery International.

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Barbarannamated

I had another round of incidents with friends on Facebook (private chat - when will I learn?!) and email from cousin that sent me into "Twilight Zone" mode.

 

Finally mentioned a bit more to girlfriends from high school (old friends!) about the neuroendocrine and liver damage. Aside from a question about how endocrine and neurology are related, the response was "glad the endocrinologist figured out what was going on and you'll be better now". I didnt even touch on withdrawal!

 

Then, got email from cousin I used to be close with inviting me to her place for 4th of July and I "dont have to be scared because it'll just be us". Picture the RCA dog tilting his head saying "huh??" Told her i hadn't been doing well which was answered with "oh, I hoped you'd been coping better" and more "huh??" from me. I finally figured out that they think im "sick" because of family distress even though ive told them over the last year that ive been having medical problems and that was the reason I had contacted several cousins back in February-March asking about care for my mom.

 

I feel like im in a parallel universe and you all are the only ones with me. Husband will not help me at all. I'm extremely alone. I still have no doctor. No response from emails to dr. Shipko. I'm about out of trazodone. Stressful.

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Nikki

Your husband can't write an Rx for trazadone? Or can you have your Pharmaqcy FAX refill to the doctor.

 

What about an Urgent Care Center?

 

Nikki

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Barbarannamated

He won't write any scripts for family which, I guess, is ethical. But, damn ethics! ;)

 

I'm so fuzzy this last week, I'm having trouble doing anything, including phone calls. I cant recall who prescribed it last. Very bad cognitive problems.

 

He's trying to get to Vegas to see his mom who had a mild stroke yesterday. I'm supposed to go. They dont want our dogs to visit, so must find care for them. We have good neighbors, thankfully.

 

Maybe my brain is just overloaded.

 

Thanks, Nikki.

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Barbarannamated

Okeedokee. Regarding the cousin referred to in previous message... I responded to her email with a simple "Is anyone aware that I'm having medical problems???" She immediately responded "NO!! What's wrong?!" etc.

Whew! That was a twilight zone moment earlier. I know i told cousins several months ago, but must've been too casual? It was a simple "im having my own health problems...concerned about mom's care". Her sister replied "glad to hear you're doing well". Huh??

I must downplay "my stuff" to others ('cept you all) and remain stoic. Very much like my family. We dont like being squeaky wheels/rocking the boat.

 

I realized that I just wanted someone - anyone - to ask how I was doing. ACKNOWLEDGMENT. Just to be HEARD is powerful.

 

Makes me wonder how we come across to successive physicians as we feel less heard and acknowledged by previous. ?

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LaylaJuneBug

So thankful that you have chosen to stay among us, Wharever! It's incredibly hard to see an end to the tunnel on most days.

 

I don't talk to people right now. I'm too fragile and sensitive to deal with any skepticism, real or imagined. Also, most of my friends and family are on pmeds, are in medicine or pharma. Not a receptive crowd. Additionally, I have the family issues playing out and cousins who used to be my support are judging me for cutting off from family. It's really really hard.

 

This might be a good plan for me too. In the last week when I've tried to convey what I'm going through to people I get the sense that they either don't believe me, or doubt that I'm really experience what I'm experiencing...or they just want to fix it. It's really frustrating. The only person who seems to understand is a cousin who has been on all sorts of meds. I do find that I may be imagining people's real meaning behind what they are saying as well. My sensitivity level is definitely heightened.

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Barbarannamated

When will I learn to keep my mouth shut about drugs??? Chatted with another friend tonight and touched on drug damage. She told me that Celexa helped her from losing her mind when taking care of her mother with Alzheimers and then again when father died and she'd use it again if necessary. I guess she DCd without trouble. I didn't get to ask before the conversation came to halt.

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Nikki

Barb do you remember Brooke Shields taking Paxil after the birth of her children for post postpartum depression? She took 10mgs. and was able to go on and off of it for both kids.

Meanwhile it damn near killed the rest of us :(

 

Your friend falls into this category I guess.

 

When I post this thread it was due to 1 friend whom I could not talk to about this subject.

I am blessed with alot of other good friends that I can share this with. Very caring and helpful friends.

 

I was just sick of listening to myself belly-ache. When I think about it now, I was being harsh on myself. WD is a suffering that sucks the life out of people going thru it. I was just plain sick and tired of being affected and feeling lousy and scared.

 

You have so much going on in your life and you are trying to mend. I had so much going on in my life and I was frantic trying to pull it all together. All of us need to give ourselves some self compassion.....

 

Hugs...miss you on FB.

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starlitegirlx

I don't really talk to people as a norm beyond the few that are close to me and with them, I don't actually bring it up unless they expect me to do stuff I can't, or behave how I cannot because of the withdrawal. Then I remind them sometimes to the point of being rude because I get sick of having to remind them what I'm dealing with when I'm doing everything I can to limit its impact on them. I did have a friend I talked about it a lot with but he's gone now. Probably scared him off. And I did talk about it more when the hellish part of it began. But now, I just want it done and am tired of having to explain to people who keep forgetting all is not well with me. It's like a cruel reminder that I have to remind them I'm no doing well. I guess I'm rather the opposite of most in this way.

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Barbarannamated

I won't talk about this for another reason: to-date, 3 people have DCd their SS/NRI after I shared my experience (and damage) with them. The most recent CTd Lexapro after 10 years on. She's obviously going through withdrawal and intense neuroemotions. Says she feels like she's losing her mind. I've tried to encourage her to reinstate a small dose, directed her to this site, but she says Lexapro never helped her so rejects the idea that she's effected by DCing it. I'm concerned and feel guilty.

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mammaP

Barb you have nothing to feel guilty about. You have shared your experience and offered advice based on 

what you've experienced and learned but if they don't want to listen there's little you can do except 

support them when they finally realise that they should have listened to you. People just don't get it do they?

She won't reinstate because it didn't help when she was taking it but that's not the issue!! I feel like I'm banging

my head against a wall trying to explain. My daughter thinks I'm arrogant 

because I "think" I know better than doctors who have trained for years. She stopped her AD cold turkey and

went back on it when she had terrible withdrawal but was convinced it was a return of symptoms. I'm actually

glad she did get WD within weeks and reinstated because at least she won't get the protracted withdrawal later.

I just hope that by the time she wants off it again she will have listened. I hope your friend takes your advice and reinstates.

it's horrid when you see someone making a huge mistake and being powerless to stop them .

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kaza31

i agree with what you said  mamma p,,, ive been trying to advise and help someone who has been going through domestic violence,, we all have given advice, spoke to womans aid, contacted police anonymously for advice to see all her options about getting away and being safe.. contacted housing association to ask if urgent accomadation could be sorted.. we did everything to help the situation...

 

this woman is on antidepressants but still very depressed, one day she takes them the next she doesnt, shes drinking heavily and her mood is erratic.. ive told her she has to stop the drinking its making her moods crazy mixing medication and alcohol. and she has to remember to take her pill every day.. she refuses to listen..

 

Ive spent many nights worrying myself sick about it all on top of my withdrawal, I fear she could do something silly like harm herself, the last thing I needed was anxiety but when its someone you know youll try everything to help.. her family are all aware of her situation to..

 

we have tried numerous times to get her away from him,, we finally thought this time she was definitely leaving only for her to go back to her husband.. she now acts like nothing has happened and her marriage is great..

 

what else can I do... ive had to take a step back as it has been affecting my withdrawal with regards the anxiety and stress..  this is the third time its all been thrown back in my face,, ive done all I can do to help.. Ive had to pull myself out of the situation... ive told her family I refuse to give anymore help,, maybe that's selfish of me??

 

i can only give some much advice and help, but when its constantly thrown back in your face and it starts affecting your own health and life, that's when i had to decide no more,, its now up to her family to try and get her the help she needs..

 

is this selfish of me??

 

i just feel at the moment im not emotionally equipped to handle anymore dramas, when dealing with this withdrawal...

 

K x

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mammaP

Kaz you aren't being selfish you have to take care of yourself. I've been there with domestic violence and it is very hard to 

let go. Most of the time it isn't just the violence it's the manipulating and emotional blackmail too. And then theres the kids,if there are kids involved they often don't see the abuse and think daddy is a hero  making it difficult to take them away. There are many reasons to stay in an abusive marriage but eventually the reasons to leave will overtake the reasons to stay. You have shown her the options and 

now she knows it's possible so when she does decide enough is enough she will know where to go and who to turn to. 

You have done everything you can and apart from abducting her and locking her up she has to make the break herself. It's hard for you

but you HAVE to step back for your own sanity. 

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kaza31

thanks mammaP for the reply

 

yeah you are right, she knows at the end of the day when she does decide to leave I will definitely be there for her..  its just very difficult to be in someone s company when you know the hell there going through,, yet she acts to others in our company like their marriage is perfect.. she knows the stress she has put us through..  I feeling like screaming sometimes... Ive even had to stop going to social gatherings where her husband will be there, he knows I know about it all the abuse.. and I refuse to sit in their company having a conversation with him and act like everything is ok.. he makes me sick to my stomach what he's doing...

 

I told her I love her, that im here for her when the time comes she decides to leave.. I will continue to socialise with her on her own, but when it comes to any gatherings where he is involved I will not be there.. if she has any fights or arguments with him, I said to discuss it with her mum and sisters, that ive spent so long investing my emotions into her situation and I honestly cant do it anymore when im going through a hard time myself with my withdrawal.. 

 

(its funny because in conversations it always reverted back to her problems with her husband, and I never got asked about their torture im going through myself, I know domestic abuse is a very serious matter and in no way comparable to withdrawal, but it would have been nice to have had acknowledged the tough time im dealing with myself.. its weird how friendships can start to become a one way street)

 

I feel better that  got it all of my chest with her,, and now her family and she knows ive tried my best to give help and ive  nothing to feel guilty for.. god forbid anything ever happens to her I will know I was a good friend and tried my best under the circumstances..

 

ill probably never stop worrying about her deep down, but maybe my anxiety levels wont be heightened continuously now that ive decided to step back and look after my own health for a while..  I need all the strength I can muster to get through my own difficult time now..

 

goodness isn't life so difficult and complex sometimes ;)

 

on a more lighter note lol

how have you been feeling lately yourself mammaP?

 

K x

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EagleWolf

For me WD and living on meds for five years was a life changing experience. Hell, i am eight years post WD and I am here, most people would want to put it in their past and carry on.But for me, the whole experience was akin to the Holocaust..Heal thyselves people and don't worry what other's think and don't take care to avoid annoying others. If they are annoyed by you then the burden is on them to open that up to discussion. Worrying what other's thought and being a complaint patient is what wound us up here in the first place!WD is a learning and changing experience in more ways than one. And many relationships I had pre-WD ended for VARIOUS reasons post-WD because I changed.And you are all brave and smart people.

 Ditto, Ditto, Ditto,

 

I believe that this whole thing changes you at the core of your being.  Truly, I would have to say that it's more a test for your family and friends than it is for us - sadly some of your nearest and dearest fail :( and it hurts, it hurts a lot.

 

Remember that the way people treat you is an indication of who they are as a person, not an indication of you.

 

Sometimes I just have to 'put up and shut up'. 

 

EagleWolf x

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Nikki

This past week I was experiencing WD and it was lousy.  I did speak to two friends, one of whom is a physician.  It was very helpful.

 

I did not,  and made a decision not to talk to anyone else (except here) about it.  It's old and to be honest, I am sick of it myself.

 

I also realized what I sound like when in the throes of it.  Desperate, not grounded.  I hate feeling that way and I am sure it must make others feel uncomfortable.

 

Feeling better now.  I have had diverticulitis from eating raw carrots and almonds.  Yes I was there when I made the decision to eat that stuff.  On an antibiotic right now.  It's working and feeling better.  Although antibiotics have their own lousy feeling properties, I know that when I am finished I will feel better.  No protracted WD from doxycycline :P

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Nikki

I was talking to my friend in Connecticut and she asked why I haven't picked up the phone and I told her I am switching meds and I can't stand talking about it to people who are not in a similar situation.

 

She reminded me that I never drove her crazy and she is always available to help.  That's a friend.

 

I have mentioned what I am doing to a few people in a very matter-of-fact manner, without hysteria (I save that for you). Lucky you.

I have been crying almost every morning for a few days and let it rip ~ alone.  My daughter doesn't need to see this again, and I am not doing this to my friends again.

 

You lucky people on this site, ow I get to cry the blues to all of you instead of my "civilian friends".

 

All joking aside I feel better not tearfully telling everyone in creation about WD. I am actually surprised at how good I've been about it.

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btdt

Nadia,I think that's a good approach w/GYN. If you hear him prescribe SSRIs for someone's PMS/DD, that'll let you know his perception of the drugs (pharma info on PMS/DD around office also a red flag). I'll be interested to learn if your doc measures FSH and how he interprets. My FSH has been above/outside of the postmenopausal Reference Range (195). I have found nothing in medical lit about very high FSH and why a RR (high level) even exist? Sounds like a Karma question :-)Article sounds interesting. I'll try to find it, too.

Are you sure that number is right? the FSH?

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Barbarannamated

 

Nadia,I think that's a good approach w/GYN. If you hear him prescribe SSRIs for someone's PMS/DD, that'll let you know his perception of the drugs (pharma info on PMS/DD around office also a red flag). I'll be interested to learn if your doc measures FSH and how he interprets. My FSH has been above/outside of the postmenopausal Reference Range (195). I have found nothing in medical lit about very high FSH and why a RR (high level) even exist? Sounds like a Karma question :-)Article sounds interesting. I'll try to find it, too.

Are you sure that number is right? the FSH?
Yes, it is. My FSH has been far above any reference range for years. Ive asked several docs about it and they just say "post*menopausal" or ovarian failure but none have explained why I'm above the very highest reference range. I mean, why HAVE an upper level to reference range?? My pituitary is working extra hard to stimulate ovaries..? I've never had any hot flashes to indicate menopause (I'm 51). What are you thinking, Btdt?

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btdt

Well at first I was curious about the FSH because I had serial testing done over a six month period where I was at six different docs and emerg rooms and had hormone testing.  I was all over the map.  Menopausal pre pubescent pregnant and normal.. I was everything except male.  I have long since stored those pages away it cost me a small fortune to get all those records but I picked away at it month after month when I was in detective mode.  

 

So any mention of hormone from you considering we both have at least one other test result in common if I am not mistaken... the white matter can't think of the word sorry...something odd in the white matter... I come and go in the thinking department and often just can't think.. I was going to follow up on something you said before but forgot... now it is all muddy.  

 

Anyway when I looked at your FSH number I searched it in google and the reference showed nothing if I put in a decimal 19.8 then I got results....so I was thinking there was a missing decimal.  The other thing it could be is the test is not the same... have found that before too.  

 

I have packed my test results away for a long time I really only have one room where I keep all I own now and can't keep it all out.  I did have it all on a computer at one point but the computer died and I lost it all. 

 

I don't know what my FSH was at this point but do recall thinking it odd way back when I have not been tested in several years.  I finally have a gp after years without one and she dose the sort of medicine I would call minimal.  

 

For instance I can tell her about a pain I have down my leg she will say that is sciatica have a good day and walk out of the room...lol yep 

Health care here is not all it is cracked up to be.  

I was years without a gp because of the doctor shortage now  I have one and I sure see a huge difference between this one and the one I had when doctors were plentiful. Just how it is now. 

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RubyTuesday

just re-learning how to relate to the internet again, seems like psych med wd includes lots of phases of accepting that my nervous system has forgotten everything it ever knew and it's all I can do to boil 2 eggs for breakfast and put on some clothes and my make up, the journey to my car to smoke a cigarette is then a major victory, sort of like pioneering to a foreign wilderness. forget the internet.

anyway, tuning in to this discussion: THANK YOU. right now I am so disgusted with the mass mind level of stupidity on this topic that i just cannot even formulate a thought. i have ONE real life friend who has gotten off of psych meds. Hurray for her. TWO friends who have never been on them who are supportive. A couple of half-assed boyfriends who would like to be supportive but have their own major issues making them incapable of a true adult partnership. I go to AA meetings constantly for the group support but NEVER share about psych meds, as I have discovered EVERYONE is ON them without a prayer of getting off. YES I am GRATEFUL for AA blah blah blah but i would be a lot more grateful if everyone would f***ing WAKE UP AND SMELL THE COFFEE!!!

anyway I got off Remiron 6 months ago and now I am getting off Seroquel. A real b****. A major pain in the butt. But I will do it. And it will NOT be the last thing I do.

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Barbarannamated

Ruby,

 

Interesting observation on AA psych drug usage. I have read many studies and anecdotal reports about people being detoxed from "addictive" drugs (Rx and street) by using SSRIs and antipsychotics. I hadn't heard anyone state their real life group observations as you have, though.

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RubyTuesday

I actually got into this whole conundrum from the other direction (other than a year or 2 when I was 18 &19) I never abused drugs or alcohol, I used them sparingly. but then after starting Prozac in 2002 my use slowly escalated, I could "handle" them better on Prozac, or so I thought. I got into daily use, now I see all that as an effort to self-medicate the agitating effects of the AD.

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Barbarannamated

I actually got into this whole conundrum from the other direction (other than a year or 2 when I was 18 &19) I never abused drugs or alcohol, I used them sparingly. but then after starting Prozac in 2002 my use slowly escalated, I could "handle" them better on Prozac, or so I thought. I got into daily use, now I see all that as an effort to self-medicate the agitating effects of the AD.

Ruby,There is a thread on this exact phenomenon. Alexjice and others have noted the same tolerance pattern. Link: http://survivingantidepressants.org/index.php?/topic/2147-alcohol-craving-on-ssris/?fromsearch=1

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Needmylifeback

Dalsaan.... Since my history is based entirely on well known and understood traumatic injuries, I never imagined anyone would have trouble understanding my limitations ~ my hip is not broken, it's shattered so badly they could not even do a hip replacement! And my back and pelvic ring was broken. I could not walk or bear weight in any way shape or form ~ I thought that was pretty straight forward!

 

Not complaining; just the facts proven by MRI. STILL.... no help. No assistance. And such unreasonable demands that I was then spiritually shattered by the lack of any reasonable understanding at all.

 

In my experience, not everyone responds to explanations. Or being hospitalized or wheelchair bound or any other well documented, commonly understood concepts.

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Barbarannamated

NeedMyLife,

I havent read your full story, but I want to say I am SO SORRY for all you've been through. My heart breaks for you and others here who have been put through such traumas... and without assistance. Many hugs.

 

B~

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NewMe

I have been told by a supposed friend that when someone asks how you are, they don't really want to know. I realized she meant no one wanted to hear how I really was. This was in general - not regarding ADs.

 

I have found that if they want to know and actually cared, they would have picked up the phone and found out rather than via default meeting. So if I am asked on the fly, I feel it is none of their business and respond with "I am still breathing, so it's a good sign." They laugh and I do mean that one - without having to BS (something I am not good at). 

 

Sometimes I respond with, "How long ya got?"

 

Gets me off the small talk chit chat waste of time and I am not lying about how I am. Something I hate to do. 

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Rhiannon

 

 

Nadia, I think that's a good approach w/GYN. If you hear him prescribe SSRIs for someone's PMS/DD, that'll let you know his perception of the drugs (pharma info on PMS/DD around office also a red flag). I'll be interested to learn if your doc measures FSH and how he interprets. My FSH has been above/outside of the postmenopausal Reference Range (195). I have found nothing in medical lit about very high FSH and why a RR (high level) even exist? Sounds like a Karma question :-) Article sounds interesting. I'll try to find it, too.

Are you sure that number is right? the FSH?
Yes, it is. My FSH has been far above any reference range for years. Ive asked several docs about it and they just say "post*menopausal" or ovarian failure but none have explained why I'm above the very highest reference range. I mean, why HAVE an upper level to reference range?? My pituitary is working extra hard to stimulate ovaries..? I've never had any hot flashes to indicate menopause (I'm 51). What are you thinking, Btdt?

 

 

I can at least answer the question about reference ranges.  The reference range is statistical, usually two standard deviations above and below the mean. The mean is obtained using accumulated test results from patients in the same lab and other labs with similar populations using the same methodology. So there has to be a top and bottom to it.

 

It's called "reference" because you can refer to it to see where a patient falls, statistically, relative to other patients.

 

Where you are relative to the reference range may or may not be very significant.  Sometimes a value that's way out of the reference range one way or another can be the first indication of an acute and serious condition. Other times, depending on what's being measured, it doesn't mean much at all, because what matters more is what that value is relative to what it's been in the past for YOU, not for other people.

 

I don't know enough about endocrinology to hazard a guess about what your high FSH means for you in particular.

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