endo's office called back
 

I'm trying to let my "hello" thread die b/c just seeing the title brings up bad memories for me so I will update here.

It will be 2 weeks tomorrow that I saw my endocrinologist. In recap my TSH was up from 1.24 in the year 2009 to 4.96 in 2012. Pdoc wanted the endo to get it down under 3 then if I still needed anti-depressants we would begin that whole ordeal of finding one that wouldn't make me manic.

So 2 weeks ago endo ran more bloodwork. Today they called and said Dr. BXXXXXX has chosen not to treat you with any medication at this time. Please schedule an appt for 6 months from now and he will repeat your bloodwork and re-assess at that time. I AM SO DISAPPOINTED. Maybe it's b/c I have this cold and I already feel awful I don't know. But I feel like Abbie when she said she felt invisible. I mean do these mdocs think we don't have better things to do than make appts, go to labs, pay their bills, sit in their offices, so they can take the WAIT AND SEE approach. Oh yeah, mdoc, I agree with you. Let's wait until it gets even worse then let's do something about it. That makes total sense *sarcasm off*

So after I pulled myself back together I made an appt with my aunt's internist. Her first available appt is Jan 2nd so I took it. I was hoping to get in sooner as my deductible is met for the year but that's how it goes. Tomorrow if my voice is better I will call endo's office and find out how I go about getting my medical records for this new internist. Thank God we live in a country where we can get a second opinion. And I thank God for this group.

P.S. Last few days I've been so sick I was just pretty much laying in bed. My husband would come in every so often to fill my water glass. He kept trying to coax me to get up and I'd say maybe after I take another little nap. At one point he said sit up, I'll bring you the laptop, you can go on your forum. I said no, it's okay, I just want to keep lying down. He was like :eek: Ya'll that's when he knew it was bad.

:Heart:

UGH!
that is maddening!
I am glad that you are getting a nother internist.
I am very sorry that you are sick....Do you have the flu?
sorry if you stated this before, my memory is awful.
Glad that you have a hubby to help when you are sick.
maybe you could get on a waiting list with this new internist to be seen sooner?
wish you felt better
(((((HUGS)))))
bizi

awww, that is a sweet hubby you have!

I am sorry you are so sick Butterfly. :(

I hear you about the wait-and-see approach. i got waited-and-seed all summer about bloodwork and i was having trouble going out due to near-fainting spells. then, i got sick and had to take other meds so i only was able to have labs last week. the fallout from not being able to go out sometimes was really damaging. and the whole being put off for tests was just infuriating. so i knowhatchamean.

Anyway good job making that appointments with your aunt's internist... Jan 2 isn't so far away. sucks about the deductible. perhaps worth putting a call in, if you can manage, saying you'd appreciate a call in case of cancellation. you can say you have an urgency and previous doc was unresponsive.

When you go to the the internist, as well as the endo records, i might also bring a note from your pdoc explaining his/her medical motivations for wishinig to treat with thyroid hormone supplementation before intervening with more psych meds, even if you are borderline or subclinical. elevated TSH indicates low thyroid function which can cause not only depression (typically "recognized" as a st), but also mood cycling. I suspect pdoc's rationale here is that giving an antidepressant, which can destabilize mood, would be best done after thyroid supplementation is done to restore normal function. Non pdocs may not appreciate the "cycling" aspect as relating to thyroid function. That's why i suggest a note from your pdoc.

I send you healing vibes. Hope you feel better soon.:hug::hug::hug::hug:

~ waves ~

Doctors
 

It sounds like you need new doctors the ones you have don't seem to be taking very good care of you Ihope you find help soon:hug::hug:

Butterfly I'm so sorry that you are sick. I hope that you feel better soon. I'm glad that you have come to this forum. I thank God that you found us too.

You may need to go to a different doctor,and get a second opinion as you said. It just hurts so bad when you realize that a doctor doesn't seem to care,or want to go the second mile to help you. I'm so sorry. BF:hug::hug::hug:

No, I took a flu shot this year and I haven't had any vomiting so I don't think it's the flu. It started out as a typical cold, then turned into a sore throat with fever & chills, then it settled in my chest & my chest got tight. I'm having a productive cough now and am on antibiotics. I'm just so weak. I get up to eat and then I need a nap. I am forcing myself to eat & drink though so that my meds don't upset my stomach. :Heart:

what about mucinex?
get well soon!
(((((HUGS))))))
bizi

It is too bad that there is not an applause emoticon on here.

:Bow: waves - will you be my endocrinologist??? pretty please??? you understand perfectly! See mdocs of the world, it's not hard if you would just L I S T E N when people talk.

It is a shame that you, and me, and Mari, and others on here have to walk our own doctors through how to do their job.

Good idea about getting something in writing from pdoc. I'm writing that on my dry-erase board so I remember to get that done. Great idea!

God-willing I won't be going back to this endocrinologist. Ever. I might as well talk to the wall. :Heart:

Yeah bizi - the Mucinex is helping a lot. I wish I would have started it sooner, it may have not settled in like it did. Next time I will try to remember to start it right away. :Heart:

Yes BF, you are so right. I was so optimistic and even excited to go to the endocrinologist appointment because I thought okay I am one step closer to getting the help I need. I thought he'll get my thyroid all fixed up. In other words I had hope. And now it's the crash of facing the fact that it is a harsh reality that some doctors treat me like a number and all I am to them is an insurance claim. And how do you tell the nurse on the phone ma'am, I don't have the next 6 months to be an experiment to see if this gets better or worse on it's own. I need treatment now. My depressions can be dark, scary places. No one understands but here. Thanks for your friendship BF. :Heart:

Butterfly,

Is there a chance that the first endo was hoping to get rid of you because he perceives you as being a complicated case?


Mari

It is disappointing when a doctor doesn't follow through. It's a feeling of utter powerlessness. We have a much harder time dealing with the physical problems on top of mental health issues.

With these kinds of disappointments,we feel like going somewhere,and crash with burdens that zap our strength. It's very painful.

When I feel better,I sometimes open the book of Psalms,and read,and feel better. BF:hug::hug::hug:

Good morning
 

Good morning butterfly, I hope that you are feeling better today:hug::grouphug:

I think so Mari. He didn't seem like the kind of doctor that would go out of his way, or normal way of doing things. He also seemed a little miffed about pdoc's opinion that TSH should be under 3. I think mdoc's egos can be inflated and they don't like pdocs telling them how to treat their patients. Even if the pdoc is right. :Heart:

Thank you! I needed that reminder. :Heart:

Butterfly,

I wonder if perhaps SOME people without bipolar might not be sensitive to the thyroid being off.
Many of us are sensitive to so many things.

M

endo's
 

I hope that you finaly get some answers some soon:hug:

antibiotic and Upper Respiratory Infection
 

Hi Butterfly... :hug::)

i wish i'd got my act together young enough to have become a doctor... lol.
not that my act is together now. lol. oh well. :rolleyes:

i'm concerned about this URI you have. getting the chest clear often takes time especially as you started the mucinex late... but i am more concerned as to how long you've been on the antibiotic so far, and whether you been improving any, i.e. fever coming down, throat less sore, less fatigue???

===> when given antibiotics, net improvement can be expected within days.

if you did not experience this, please go back to the mdoc and tell them the antibiotic is not working. if they did not do a culture, ask for one. The purpose of this is so they can:
-- identify the attacking organism (very important in case of strep)
-- test the attacking organism with various antibiotics to check for resistant strains
-- select and prescribe a safe and effective antibiotic to which the organism has been shown NON-resistant.

to avoid cultures they sometimes will take a shortcut, and give a broad spectrum like a fluoroquinolone (eg: Cipro - ciprofloxacin, and others ending in "floxacin") ... but there are some issues with this approach, not least possible resistance from prior overuse (they were all the rage for a while and highly overprescribed).

SO (reminder) if antibio hasn't shown benefits yet, on the throat pain, fever, chills, and fatigue, go back to mdoc, throw a semipolite hissyfit :hissyfit: and request a culture.

~ waves ~

endocrinology... thyroid values etc
 

Hi again Butterfly :D;)

Regarding the thyroid issue...

Do you have a history of hypothyroidism with or without treatment, or is this the first time you've noticed your values changing?

You did indicate your TSH has shot up so, there could indeed be a problem, however that value is just barely on the high end, and if your T4 is within range still (what is T4 value?), not medicating is technially justified.

Has TSH increased progressively over time, or are you comparing a single current test with a much older one? There can be temporary variances too. This spring, my TSH had gone up to 7.xx. My pdoc called it "compensated hypothyroidism" because my T4 was normal. 2 months later a retest showed normal TSH again.

There is another thing I should mention... i've been through this. Some pdocs have actually adopted the use of thyroid hormones in cases they consider "subclinical hypothyroidism" and have reported success with mood regulation. This is neither standard practice, nor is it safe for all patients. If it is done, close monitoring is essential. If the TSH downregulates so far as to restore the original TSH/T4 values for a patient, those T4 values are most likely that individual's norms, in which case, medicating into "official range" is dangerous: in the long run, endogenous T4 production can be shut off - not always reversible. (i had a situation once with a pdoc giving me T3+T4 and my internist blowing gaskets at him in writing, on his lab copies. the meds did not keep my t4 up for long, the overall effect was that my TSH just got lower and lower...). Remember the official ranges are based on stats. individuals may have norms slightly outside of those ranges.

Getting the pdoc's perspective to the internist sets the stage for a more open approach on her part, i think. If she too wants to wait you could ask whether, in light of the psychiatric needs, it might be possible to do a "trial period" with medication. Monitoring will show whether it is actually needed or inappropriate as I described above. However, if she is firm about not medicating, do realize she is simply taking a conservative approach to protect your thyroid from potential iatrogenic damage. In compsci or car repair, we'd say "if it ain't broke don't fix it."

One thing you could do is request a lab screening for Hashimoto's antibodies. If you test positive, they will give hormone therapy.

I wish you the best. I hope your aunt's internist listens and is openminded. Most of all I hope you click with her. That really helps. :hug::hug::hug:

oh boy it's past my "bedtime" (HA!) again

~ waves ~

Good morning
 

hello Butterfly,I hope that you are felling better have a supper day:hug:

Waves, I still think you would make a great doctor, you are so knowledgable!

I am feeling better. I don't have fever any more. My throat is still sore but my voice has come back and my cough sounds more like a normal cough as opposed to a choking goose. I taught my daughter school yesterday morning and cooked chicken spaghetti last night. So I have resumed some of my normal day to day activities, which feels good. I'm hoping to kick the last of it in the next couple of days. I'm still drinking lots of water. And hot chocolate. :Heart:

Waves, I so appreciate your input on this matter as my mind is swirling. Yesterday in the mail I got another piece to this puzzle.

OK, in 2009 my TSH was 1.24.

pdoc ordered bloodwork which was drawn on 11/26/12. CBC, Hepatic Fuction Panel, BUN, Creatinine, Valproic Acid, Lithium, all normal. Only thing out of norms is that TSH is 4.96.

pdoc tells me to see endo, his schedule had a cancellation, and I was seen 3 days later. They drew blood on that day 11/29/2012.

Then remember I got the phone call Monday that Dr. BXXXXXX is not going to do any treatment at this time. Let's schedule an appt in 6 months.

Well yesterday in the mail I got a copy of the bloodwork that that endo's office did. It shows my TSH as 1.86.

Is this possible? That my thyroid went from 4.96 to 1.86 in 3 days? I mean how does that happen? I have double & triple checked and I'm looking at both lab copies right now and this is what they say. Mr. Butterfly looked at them with me last night and we're certain this is what they say.

If it is helpful the endo's bloodwork results also has T4 1.14, T3 166, Thyroid Peroxidase (TPO) Ab 7 which are all in the normal ranges.

So I guess I take it all back about endo being a jerk. If nurse on the phone would have just explained that my TSH was 1.86 I would have understood him not treating me with thyroid hormone, b/c that's under 3. I just don't understand such a high fluctuation in 3 days.

I am still glad that I have the appt set up with the internist. Maybe she can retest and tell me what it is. My appt is Jan 2nd. Although if there is this much variation day to day then what is the point of even getting TSH tested?

I'm soooooo confused. :Heart:

Oh I forgot to say waves, my dad had a benign tumor on his thyroid and as a result had his thyroid removed. 2 of his sisters have thyroid trouble but my mom is unclear as to what kind, they still have theirs.

Thank you katmae, I am so far. In 15 minutes I'm leaving to take the children shopping so they can buy my husband something for Christmas. This should be interesting. Hope you have a great day!!!! :Heart:

shopping
 

have fun with the kids,I do most of my shopping on line,as I have bad panic attacks, and this makes it not so fun for me :hug::hug:

I suspect that the 4.96 was bogus / lab error
 

Dear Butterfly

I think a doctor's life would like stress me out too much. I couldn't handle compsci... not sure I could do medical. At one time, I was more sure but it was not an option. we'll never know. I like to read though.

Thanks for the clarifications on timing of tests, and results etc. In light of your most recent post here's what I think regarding the TSH changes.

The first, simplest and most likely explanation is that the 4.96 value was a lab error. Typically the values must be transcribed by a human at least once, maybe more times. Suppose your ACTUAL result was 1.96. Considering that the 1 and the 4 are adjacent keys on a numeric keypad, it would be very easy to get 4.96 from 1.96. Furthermore, some folks handwrite 1's such that others confuse them as 4's. So a legibility is yet another possibility. 1.96 would be a very good match for the 1.86 reading obtained from the draw at the endo's 3 days later. Values normally do fluctuate a small amount, and methodologies/results vary between labs anyway, so i'd not expect an exact match. Now, if there were significant differences in the T4 and T3 also, then the error may have been that a sample got switched with someone else's during the testing or reporting process - occasionally happens). Here i have identified 3 distinct but possible lab errors that would explain this "crazy" value.

Second explanation (unlikely*) - TSH shot up temporarily due to your contraction of this clearly very bad infection ... immune system reactions can cause all sorts of things to go "out of whack" temporarily.

Third explanation (unlikely*) - Thyroid pathology may present with fluctuations in some cases, especially at onset of thyroid dysfunction.

Fourth explanation (unlikely*) - changes in foods and meds can affect thyroid hormone levels.

* the reason i say the other explanations are unlikely is because it typically takes a while for changes to occur. I can't be sure of this but 3 days seems like a ridiculously small amount of time for such a drastic change. When I was retested due to abnormal TSH i was told to wait at least 6 weeks.

You do well to keep your thyroid monitored given your dad's history. I think the endo should have called you to explain his choice, and allow you to ask questions. Now, while I don't think there's anything to worry about, you should have had opportunity to ask the doctor questions about the previous lab value. I think it is a good idea to see the internist, to get the benefit of a doctor's consultation on all this. Mention your dad's history to her also.

But until then, I would sit back, relax and have yourself one of those chocomintylicious drinks you wrote us about! ;):D

:hug::hug::hug:

~ waves ~

p.s. I'm really glad to hear you're starting to feel better!!! great news! :yahoo:

OK so not a doctor. Done with that. Nurse practitioner? or nurse maybe? Come on, drug rep at the least? [smirk] Just joking around, I'll stop giving you a hard time now. You truly are a wealth of knowledge!

Thank you for your reply. I just hung up with the lab who says that they no longer have blood samples from 11/26 so it can't be re-run. I asked her if they keep any handwritten records and she said no. So I guess internist will just have to order again and 3rd time will be the charm. I'll keep y'all posted.

Oh and yeah, when I went to endo appt. I brought a copy of the results with me for my file there. Why didn't the nurse who called me back mention anything about the drastic change in numbers in 3 days? You would think his office would have noticed that. I take that back. Doctor's offices are so busy these days, I doubt they compared them. But, seeing as how that was the whole reason I went there in the first place, I would have thought they would have. Who knows. :Heart:

Waves I think that you would have made a good teacher,doctor,scientist,and etc.,and etc. I would have liked to contribute my skills to society also. It's to bad that we have these mountains(mental health issues) that we have to deal with. I look at these people and say,"I wish that I could have done something like that".

I hope that my writing was correct. I'm heart broken over the kids that got killed in Connecticut today. BF:hug::hug::hug:

hey Steve
 

Dear Steve

thanks for the compliments. i know what you mean about our mountains. i could see you working for NASA or something with the passion you have for astronomy. myself, i have had to face the great green monster when it comes to personal achievements and others.

~ waves ~

Hey Butterfly
 

ROFL nahhh. you gave me a chuckle. especially with the drug rep!! LOL!!! you know, if i had a car, i could do the rep thing. except that i met a few - sitting in my doctors waiting room. they work dog hours. and you know they are often caught between the devil and the deep blue sea. they don't advise based on their knowledge... they are there to pitch, and occasionally must avoid giving information the drug company has found out... Zyprexa lawsuits come to mind.

i would have actually liked to have done neuroscience or pharmacology ... i almost applied for a neuroscience program at one point but it would not have been realistic by that time (inadequate prereqs, no funds). in undergrad studies, i started out as a chem major and it was only by my own furious stubbornness in reaction to some "bad treatment" i received/perceived, that i didn't end up as one. first i boycotted class, and then egregiously failed the first semester by flying home on the day of the final instead of "risking a low grade" by taking it. (no, i wasn't full of myself or anything.) :rolleyes: and that was that. shot myself in the foot. i was not even manic at the time. i was just used to getting good grades... saw things very black and white. If i didn't try, it secretly didn't count. Alas, it publicly did - put my GPA in a total hole :( and destroyed my shot at a scholarship and honors! Life's lessons... and chemistry was no more.

-------------------

It was a good idea to call the lab. Too bad they didn't have the samples - they might have re-tested for free.

Who knows what the deal was with the endo. They may have ordered the redraw specifically due to the high TSH. if that was your first anomalous reading, when they got the normal result they probably figured, lab error, and thought no more of it. but yeah, how nice to leave us patients in the dark huh. :rolleyes:

i hope the internist is more communicative. it didn't sound like you particularly liked that endo. good luck and keep getting better.

hope you had a good day shopping with the kids. :):heartthrob:

~ waves ~

I know what you mean about what could have been. I think back to high school sometimes and wonder what would have happened to that girl if she hadn't gotten bipolar disorder. I had so much potential and then whammo.

On a positive note, we are all contributing to each other's lives here, and that is important. :Heart:

Hi,

I wish I had insight to offer.
I do congratulate you for your skills, strength, and patience in following through.

Mari

Butterfly,

We cross posted.
'Hoping you can embrace the hope you have and continue to let it lead you.

M

being a mom is one of the toughest jobs there is....I am glad that you are feeling a little better.
bizi:hug:

The same thing happened to me. In my second year of college,whammo. I don't know what happened,but I lost my self to high anxiety. I ended up in a Mental Hospital for a couple of weeks. It wasn't a bad hospital. They didn't do anything against my will. It was like a time of rest. It wasn't like a Psych Ward experience, like I had down the road from this. A Psych Ward is a horrible place. A Wellness Center experience like I had 2 years ago was alright. I was able to talk on their computer to Mari,and other people on Neurotalk. BF:hug::hug::hug:

Wow BF, my bipolar manifested at it's worst during my second year of college too, and then during my third year I lost my scholarship and dropped out. I was a microbiology major. In high school I was quite sociable, friendly, funny, and involved in all sorts of clubs, math club, marching band, etc. Senior year I was class treasurer and I graduated on stage b/c academically I was in the top 1% of my class. I was voted by our student body as "Most Likely to Succeed". It is in my yearbook for all posterity. I was so proud back then but today thinking about it adds to my depression. I haven't been back to a single class reunion in fear they would remember, expecting me to be this fantabulous research scientist by now and have to tell them I never finished college and that I'm a stay at home mom. :sigh: I know I shouldn't feel this way, but it makes me feel embarrassed. Thinking back it's like I'm a different person from her. She was so happy and so... together. I fall apart at the slightest thing these days and can't handle stress like I used to. It is so hard to even look people in the eye when I talk to them. I feel so socially awkward, even though I read a book about social anxiety and did the exercises. It's like I've lost the ability to make small talk. But I know it wasn't always this way and it's so frustrating!!!!!

I'm glad you had a good experience at the Wellness Center. Having internet access would make me feel not so trapped & isolated. :Heart:

I wonder why this happened to us. My mother had emotional problems,and dropped out of college also. She didn't admit that the problem was Mental Health Issues. She said that she lost her voice. When I was growing up,I noticed that she lost her voice when she was upset. She was troubled about something.

This bipolar illness isn't fair. I was headed toward being in the science major field,but my mental health derailed all of that. I was gaining anxiety problems in High School though. I had evidence of having OCD when I was about 5,or 6.

I love science. My first love in science was collecting butterflies,and moths. Then I became interested in the weather. Then I became interested in astronomy,then it branched out into the whole earth sciences,and space science.

I too get embarrassed way to much. I found a High School friend on facebook who was a good friend,and I haven't gotten in touch with him because I didn't have a career. I'd be embarrassed to say that I worked in Supermarket work,and that I wasn't working right now. I haven't been to any of my High School reunions either because they would ask me what I've done in my life,and am I married. I never married. I'm straight,and I'm normal. I just couldn't handle the responsibility of marriage. I came close to getting married,but we wondered about my mental health conditions,and she married someone else. That hurt.

That's always been a conversation stopper. No career,and not married. Then I wouldn't know what to say unless I rapidly changed the subject. Oh this has been a painful,and embarrassing situation,on top of the mental health issues.
BF:hug::hug::hug:

Thank you for sharing BF. It makes me feel not so alone in this. I'm so sorry for the hurts you've had. This illness is very unfair.

For the most part the people that were in my unit at the psych hospital, fellow bipolar people, seemed to have a heart of gold, same as the people here. We were in varying states of functioning abilities, but we were all doing our best to put our lives together. No fellow patient was rude or mean to me. I think bizi was right when she posted that list of positive things about sensitive people. We are good people. :Heart:

you are a good woman butterfly and you are too steve...we all are.
bizi

Bipolar onset?
 

Hi, Steve and Butterfly,


My bipolar manifested itself after college. I was 25 and in graduate school and getting a divorce because my husband had found someone else and announced he was leaving.

I was perfectly fine at one point. And then at another point, I wasn't. I went to therapy for depression due to the divorce. After six months the pdoc referred me to a pdoc. The pdoc gave me lithium.

M