Seeing my first endo, question about results...

I am still waiting on a written report (to be delivered by mail...) from my endocrinologist. I'm just newly pursuing thyroid problems because I learned thyroid issues are rampant (5-6 known cases) in the maternal side of my family and I don't know my father's or paternal grandfather's side at all. I am diagnosed with interstitial cystitis and fibromalygia.

For me, the fibromalygia diagnosis never felt right. They never tried to exclude anything and never inquired all that much about my quality of life. Most of my doctors would rush visits.

My medical history (feel free to skim or skip):

My problems started from a young age (12yo) with a severe UTI. My doctor was a medicaid clinic quack who prescribed ointments and/or constant antibiotics. This is the type of woman who laugh, smirk and grin at you when were talking about symptoms. She would smirk when pulling my entire big toe nail out. My mother is severely crippled and she was very mean-spirited even in her presence. She would pick fights with me and her just to make us feel bad, I guess because we were poor and therefore, lower class. We were very intimidated.

Finally, I was dragged from the clinic with my records by my maternal grandmother and she took my readings to a pediatrician (who she had to pay out of pocket for). He found a severe enough infection that said I needed an IV for, but because of cost, they somehow got me a pill to treat it. I'm not sure about the details because I was so young (13). I've had interstitial cytitis ever since. As years go on, I started to show fibromalygia symptoms. I am now 30.

Now my symptoms are ruining my life. I exercise regularly and watch what I eat and that was working for a while to kinda keep it under control (but to be honest, still struggling). Now even that has stopped helping. I have had lower level cognitive/concentration issues for as long as I can remember, but now they are than ever worse after being on some very incompatible birth control for 3 months. The pills made my head feel jarring and I was having suicidal thoughts, which is very unusual for me because I usually don't take things very seriously and am laid back. I'm having trouble remembering things and driving is now a real problem, because my concentration and focus slips. I am very detail oriented and usually keep things all in my head, but seems like I will go from together to suddenly not being able to remember what/how/why I was going to do something that day. It's like my head gets rearranged. My speech has been much worse.

Usually I have moments where I switch words or say something nonsensical, but it has become very common now and conversations are a struggle (especially new ones)... I will talk and another word will come out and then I will have to correct it. For example, I was talking to my husband about a baseball park and I said bicycle park. Sometimes will be even more unrelated than that. It doesn't start in my head (that is I don't think it first), it just keeps coming out wrong without trying. It's not really a cognitive mixup, more neurological.

I've had enough and I know something is very wrong. I do not believe the fibromalygia diagnosis anymore. The things I do to stay well was already consuming my life and nothing really truly helped. The bladder issue is under control with medication, it is just the "fibro". When talking to my maternal grandmother, she told me about my family history. I have a fear of doctors due to past experiences and I am easily intimidated, so to try to avoid making that issue worse, I heavily researched and found this endo which has 55 years experience.

He was relatively warm and he asked a lot of questions and honestly don't have a bad word to say about him. He genuinely seems to want to get me answers and says a lot of my issues sound like thyroid. Hopefully this is a good sign, but he mails his reports through post...has been a week, but I need answers and I just want my life back. I found a way to get the results online, but I am so confused about the results. It seems like I could be hypo, but I'm not an expert...

The one test he seemed to have neglected is to do a Free T3, which is annoying, but he did do a total T3. None of the ranges are posted, so I can't really share those... (Update: Found ranges by printing results). but the numbers are not showing up red, so I'm guessing in range.

Test Results:

TSH, 3rd Generation: 0.947 (.360 - 3.740)
Total T3: 1.27 (.6-1.81)
Thyroid Peroxidase Antibodies: 47 (<=60)
Free T4: 1 (.76 - 1.46)
Hemoglobin A1C: 5 (<=5.6)

My HDL/LDL and Triglycerides came back high, but I was not fasting. Nobody in the office told me to do so before the test.

A side note, my liver enzymes (ALT + AST) have been raising without any known cause. Has been going on a year now.

Post Edited (ICPatient) : 1/1/2016 4:47:18 PM (GMT-7)

jujub (formerlyJudy2) said...
Your thyroid results are all comfortably within the normal ranges, so you likely don't have thyroid problems. Your A1C is superb, and pretty much rules out diabetes. The elevated blood lipids may warrant some follow-up because my internist always says fasting or non-fasting doesn't make a huge difference when testing these.

I'm sorry you're having such a difficult time, and I hope you find an answer soon, as well as some relief. Feeling bad all the time is horrible.

Thank you for the reply and support. I had forgotten about this post until I looked in my email.

I think part of what is not helping is the amount of stress I've been under. I had a bad compatibility with some birth control in the midst of care-taking for my grandmother who was staying in my home recovering from a full knee replacement. It didn't correct itself, in fact it got worse, and the symptoms were severe for my normal. I fell into a mild depression worrying about what I'm going to do because I have a phobia to doctors. I wonder if maybe I may have contributed to my own situation by being so stressed out. I'm trying to reflect and just putting the brakes on my concerns for a little while... just so I can breathe and recollect my thoughts.

I'm starting over with a new frame of mind and will just go back to my modified diet and try to push my exercise routine a little further. Whatever it is, whatever is found/not found, I need to continue to work on getting my life back. I've wanted to give up, but that is not going to fly. Someone else diagnosed with the same things suggested some hormone tests that I should look into to rule out problems but I already know it is going to be a long road convincing doctor's to do anything. I've never had even remotely normal periods and that has always been a concern.

Funny enough I have a strong personality, but it's generally repressed around doctors. I'm 5'0 and am often mistaken for being underage. It's hard for me to argue with them though. My grandmother worked at a nursing home as well did caretaking, I caretake, so I've stood on their side as well of being frustrated when you can't help someone or you don't know if they will listen to your advice. It's hard to unsee it and not have empathy when I know that they're just trying to help.

I've had a lot of helpful suggestions. I'm just very intimidated by doctors. I have almost 0 trust in my ability to discern from when something needs to be looked into heavily and it does not help that I have anxiety problems with dealing with the doctors.

Thank you for your warm supportive words. They mean a lot

about your anxiety with doctors.

Try making a written list of symptoms and questions. For symptoms give onset, duration, things that worsen or improve. For questions be as concise as possible- in other words ask the question you actually want an answer to.

Also let the doctor know you have problems with memory and would like permission to record the appointment so you can listen again to be sure you get all the information. This will not only help with that but most doctors will be more attentive and careful to explain when being recorded.

During the visit you can concentrate on your notes and it will help lessen that feeling of being trapped in a small space in an uncomfortable position and should help empower you somewhat.

Good doctors are glad to know you are listening and are making every effort to take their advice seriously. Bad doctors get paranoid and offended- don't see them twice.