Need suggestions - please!

[moody2]

I am wondering how to best talk to my doctor about how I'm feeling.  I was diagnosed hypothyroid and have been taking levothyroxine since the end of May (now I'm taking 50mcg daily).  My last blood work in September had my TSH at 2.72...  But I don't feel well.  I'm tired; I'm freezing cold all the time (shivering compulsively every time I go outside, even though I'm wearing winter clothing and it's only about -2ºC... and sometimes unable to stop shaking inside either); and I don't know if it's related but my eyes have been bothering me a lot for the past 2 months or so (swelling, watery, gritty, painful...)

My problem is this - and I know this is pathetic - but I don't know the best way to explain how I'm feeling to my doctor without getting upset and sounding like a pathetic child.  And so I end up not being taken seriously - even though I know that something is not right.  I'm seeing him again on Monday morning (I had more blood drawn on Wednesday), so  if anyone has any suggestions about how to say these things and sound sane, I would very much appreciate it.

Thanks!

[moody2]

Thank you so much to everyone for your support.  I am making a list of my problems – at least the health ones :-)  ... So hopefully I will not forget things like last time, and the time before, and the time before that too.  My GP is inclined to blame everything on weight, which I suppose may be possible in some cases, but it really can't the reason for everything (like the weight loss in the first place).  It helps a lot, though, to know that I'm not the only one who finds this difficult.

[Rachel4]

Great post. This is definitely an issue that many of us deal with. I just got that answer that I hate from doctors. I was telling my GP about stomach issues (that had led my Endo to check for celiac- negative). My GP said it was probably all stress, but I really don't think so. She that I could probably look at stressful events and see stomach upsets within 48 hours. So after we get back from holiday travel (which will be stressful) I'm going to start keeping a food and symptom diary to go in with. I find that having things written down make those "I'm not happy with these results" conversations easier.

[barrettsark]

I'm going to my Endo tomorrow and I feel the same way.  I'm taking my mother with me to help me out.  She knows me and knows that I have not been myself lately.  I also wrote out a list of questions and symptoms that I'm still having.  I hope to get her to order all the test that I want.  and suggestions on how I go about getting her to run the test that I want?

[Barb135]

I have a very similar problem, in that it's hard for me to explain exactly how I feel in order to make the dr listen.  Plus my doctor's practice tries to limit each patient to only one complaint per visit and we all know that hypothyroidism can't be limited to only one symptom at at time.  

Another problem is that the last time I was in my dr's office (only last Monday), he completely lost patience with me (long story and I've posted some of it previously); bottom line: I still don't feel well, can't lose weight, etc and he won't even discuss my symptoms, nor would he consider running free T-3, ultra sound, TPOab, etc.  He treated me like he thought I was some kind of stupid hypochondriac who was just looking for things to be wrong with me!!

His nurse practitioner had sent me to an ENT because of a choking feeling and he did order all those tests (except free T-3 and I think he just forgot that), plus some others (that might have been what upset my PCP).  Will see ENT on Thurs to go over all the results (they did call to tell me I tested positive for anti-bodies - Hashimoto's??).  

I am looking for a new PCP as I can't continue going to someone who treats me like a hypochondriac who is wasting his time.  

[mudkme83]

I agree this is a great post. I find it real helpful when i go the the endo to come prepared and bring them a list of things that you are having trouble with. I tend to kinda freeze up and not be able to explain things exactly how they are because im so excited to be there.If they dont want to take the time to look at past labs or really if you feel like the doc isnt taking you serious,find a new one. It shocks me that i had to wait over a month to see my first endo and came somewhat prepared and he spent 10 minutes with me.I was kinda blunt with him and think he felt intimitated.I am 6ft 4.lol. Its hard not to be blunt with them when you dont feel well. After all this is your life here, not theirs.

[stella5349]

The is a great post- I don't see you as pathetic at all.

This has such validation. It is odd but think about it - when we don't feel well and don't quite know how to explain it -  it IS difficult to go to the doctor and approach them - It's not like going with a broken foot and then getting fixed and then be repaired.

I think many patients are even intimidated going - and sometimes they come across like WE are wasting THEIR time.

That's frustrating because we know we try to get as much help at our visits as we can - but for many we still walk out with nothing solved. We also realize we don't have them until the next office visit which for some can be months away so we fear when we figure it out - they are not even available to talk to.

I agree with taking a list - or a letter you wrote - This way you can remain focused as said - and try to get some answers.

[moody2]

I am hoping, in a way, that my TSH has changed, so that I will not need to argue...  I've had free T4 run, and it was normal last time, but low before that.  

Thanks for the suggestion to write things down – I will try this...  I've been taking antidepressants too, but I don't think that my mood is the usual problem so much anymore... Just when I get nervous (like I do, apparently, when I go to the doctor).

Thank you both!

[Kipp44]

Hi,

I understand how you feel - I too cried in the Doctors office and he patted my hand suggesting all was depression. Do write down your symptoms so that when talking to him you can keep focus even if you do get upset. Do not forget to mention that your emotions are also affected - this is also part of the disease.

Good luck - maybe take a support person who could also act as your advocate if things overwhelm you.

[estrelinha]

May be your TSH have changed since September, but being medicated your TSH should be between 1-2. Some people feel well at TSH of 1, so may be that explains what you feel. Did you run thyroid antibodies? (TPO , anti-Tg and TSI), what about an ultrasound? are your free T3 and free T4 normal?..