Yes I have a thought
It sounds like the TSH is the only tool your doctor is using to look at issues.
I posted this on another thread you may find interesting.
TSH is the least reliable indicator of any of the thyroid tests of what's actually going on with your thyroid. The only way to actually find out how your thyroid is functioning is to have free T3 and free T4 bloodwork done. T3 and T4 are the actual thyroid hormones (TSH is a pituitary hormone) and much more closely correlate with symptoms than TSH.
Menopause vs. hypothyroidiam is a bit of a conundrum. So many of the symptoms can be the same...it's part of the reason it took me 18 months to get my hypo diagnosed. Also, between hypo and hyper thyroid, many of the symptoms "cross over", e.g. some people report weight gain when hypo, some when hyper, some whenever the meds aren't adjusted "just right".
I don't think getting your FT3 and FT4 tested is a waste of time at all. Could you possibly get a current doctor to order these relatively soon? When you get them, you can post them here if you'd like (along with their reference ranges that will be on the printed lab report - these must be from your lab as all use different ones), and members can comment on their interpretation. Also, if you do end up going to the endo, these will be the first tests he would order anyway, so you'll be one step ahead of the game.
the OB won't do any tests but the endocrinologist will see me on the 10th, I just want to know what the heck is going on for real not be dismissed. Getting into the endo was pretty difficult they needed referrals (my insurance company doesn't require it) but at least I am going on June 10th this is so frustrating?!
Stella and goolarra gave you some very good info. TSH does not correlate well at all with hypo symptoms. The very best correlation is with free T3, with free T4 running a distant second. This is based on scientific study. This is very logical because free T3 is the most active thyroid hormone and largely regulates metabolism and other body functions. The best situation you can hope for is a doctor who will listen to your symptoms and test and adjust your free T3 and free T4 levels as required to alleviate your symptoms and get you to the Euthyroid state. By Euthyroid I mean neither hypo nor hyper symptoms.
The reason I am repeating some of this info is that you need to be firm when you go to the new doctor that you want free T3 and free T4 testing done and to be treated for your symptoms, not just to get your TSH within one of the so-called "normal" ranges that are used. If your Endo has a problem with this approach, be aware that you may have to keep looking for a good thyroid doctor. Please let us know how it goes.
thanks I am writing this down. I figured it would not hurt to make a note of all of my symptoms and discuss it with her as well
That's an excellent idea - the list. I did that on my first visit to my endo. I think having the list in writing (and a copy just for him!) makes doctors tend to take you more seriously and listen to you better. After all, you're committed enough to your health to go to the trouble, and all but the densest have to appreciate that. I also had a list of preliminary questions. Of course, our discussion generated more.
I once went to an electrophysiologist (cardiac specialty). I had my usual list of questions and was asking them and taking notes of answers. The doctor actually had the gall to tell me to stop taking notes because HE wanted me to listen to HIM. I really wanted to ask him how he made it through university and med school if he had never taken notes while listening to a lecture. I could tell that my notetaking was making him completely whacked! Okay, doc, now lets take a look at your psychological issues!
Best of luck at your appointment.
i've been to some dense doctors before then, with my lists. Grin. I just wanted to say, the general doctors and nurse pracs don't seem to really understand all this stuff. I was told I was hyperthyroid and needed meds immediately only for them to change their mind when they called me five minutes later. I was told to wait and see, a favorite past time of theirs apparently. I didn't wait, I went to an endo who thinks I may have a pituitary problem, not a thyroid issue exactly. My best advice, ALWAYS go to a specialist, ALWAYS be your own advocate, and if the doctor dismisses you or you end up feeling the appt was a complete easte of time, dimiss THEM and find another endo or doctor.
I think you're right about PCPs and RNPs. They could get up to speed on thyroid in not too long if they were willing to spend a while on the internet, but they usually don't.
I have a pituitary problem, too, and I was thinking my PCP was going to kill me before she got my TSH down to where she wanted it. I finally found a good endo, and discovered that, in fact, she would have killed me and still wouldn't have gotten my TSH to normal.
I think a specialist, once you have a chronic condition, is a really good idea. I also think maybe it's time for PCPs to redefine their roles. Should they be coordinating our care among all our specialists and acting as liaison between the specialists and the patients? SOMEBODY should be doing that. In the meantime, you're right, we have to do it ourselves.
I agree about dismissing them if the appointment was a complete waste of time, but I'd add, don't pay them for a complete waste of time, either.
well it is intersting my grandmother (maternal) had pituitary issues she barely reached four feet tall in adult hood. My mom and her sister were normal sized as are my syblings but I am barely 5'3 which is odd with parents who are father 6'2 and mother 5'8 I just know something else is wrong with me not just menopause. I had my nails done yesterday and the lady kept saying to me, why are your hands always so cold? they are freezing (my feet too) always, Weds, is the appt. I will post what happens, it is at 4:30pm so I don't expect any answers any time soon, we leave for europe in a month but maybe she can at least get some testing started before we go. I am so glad i am going to an endo, nothing against my primary care doctor or OB but I KNOW something is wrong, thanks for the support
well I am SO upset, I got to the endo today, now this is after I saw my neurologist on monday and he said that a tsh is not a valid test to confirm or deny thryoid issues that I need the T3 and T4- well it took her all of five minutes (the endo) to tell me I am just fat an menopausal that the tsh actual was.8 not .08 (the gyno reported it wrong) and so my thryoid is working fine, felt my throat and had me swallow and said i must have an irritated throat (looked at it after I insisted) but my thryoid is not enlarged. I gained five pounds since I saw the ob less then two months ago and she suggested I need to stop eating so much and excercize. i told her how sore and tired I am and had her feel my hands she said that she would run some blood tests for me to take to another doctor for fatigue and cold intollerance that I do not have thyroid issues- so she had me get a comprehensive metabolic, CBC with diff (whatever that means) a sedimentation rate, Thryoxine Free and Vitd D2, said she will rerun the TSH in case there was an error and had me do a urinalysis for B12 and reflex to microscopic. She bascially blew me off and said mabye I am tired because I am fat and my cold intollerence she thinks might be due to circulatory problems- said i look septic or something. I really disliked her and am horribly depressed now, how can I keep gaining so much weight and be so exhausted?
oh and by the way she was laughing at my list, I even photocopied everything in my multivitatins etc and she mocked me saying"wow you take a lot of viatmins" and that she has never been given a list before.
Well, at least she showed her true colors early. She's pretty much not a keeper!
Your neurologist is absolutely right about TSH. Why can't some PCPs and endos get it?
Thyroxine Free is FT4, so it's good that you're getting that. An FT3 in addition would be great, but at least tthe FT4 will be helpful in determining your true thyroid status.
If she's never been given a list before, then maybe you introduced her to something she might want to start anticipating. What a loser she is!
Post the FT4 (and reference range) when you get it, and we'll comment further.
Some (most) doctors just MAKE me ill.
I am SO "hip to your struggle"! In the past, I too had the "blow off" from a Dr and ended up having a problem that nearly killed me! In a nutshell, I got a condescending pat on the hand at age 38 with my Dr saying I was in perimenopause (Grrr). It turns out I had a parathyroid tumor that was driving my blood calcium levels so high, I was in very real danger of having a stroke or heart attack...For 4 years I had been having increased fatigue, back and joint aching, menstrual problems, headaches, heartburn, bowel problems, anxiety and sleep problems, kidney stones, phantom gut pains, gall stones, frequent urination, and short term memory problems. If it hadn't been for me making a stand in the Drs office (she was refusing to order a blood test for a PTH -parathyroid hormone) and refusing to leave until she listened to me, I would probably be dead now. Shortly before my tumor surgery, I had to go onto heart medication (at age 42!) to keep the rate and blood pressure down. I'm happy to say, that chapter of my life is over, I canned that Dr (they DO work for us you know) and have regained my health. It *****, but sometimes you have to be a pain in a Drs hiney to get quality care. My advice to you...Change your Dr. Keep copies of your medical chart, particularly your lab results. This way, even you can see if something is abnormal and can ask about it. Don't be afraid to ask questions, and TELL the Dr what you are doing to improve your health. Even if it isn't working, this paints a picture to them that you are interested in getting healthy and are not "just another whiner"...Remember, it is called medical PRACTICE...We are what they practice on!) (((((((((((((((((((HUGZ)))))))))))))))))~MM
One last thought...Have you been checked for diabetes or insulin resistance?
hi i am hyper with graves and so is my cousin my tsh is 0.05 and i have put on 18 kilos since i was diagnosed and the same goes with my cousin i did read somewhere that around 5% of people with hyper thyroid will gain weight and i know some of it is to do with the tsh releasing to much thyroxine wich will make you a bit puffy due to fluid my doc put me on fluid tablets but i only take them when i look like a puffer fish hope you get the right answers soon so you know what to do next i know i feel like i am my docs guinni pig sometimes you what a quick fix and all the right answers but it's a waiting game so take care .
I called today and asked if she would add the T3 to the tests since the hospital still has the blood and was told that she is "too busy" to speak with me and that if I want more tests to have another doctor run them. I said I want copies of my results and they said when she is done "reviewing" them she probably will send them to me. That they would go to my primary care doctor for sure. Ok, that guy is fine for allergy medications or my son's sports physical but he is totally clueless- he is such a country bumpkin even has a DOG lying in the middle of his office hallway. I told my husband I will write her a demand letter for my results I must have a right to have them don't I? The lady at the lab was nice and photocopied the sheet for me so I would know exactly what was orderd.
oh and no tests for diabetes, however my in laws were here for thanksgiving and father in law has diabetes and she was testing him and giving him his shot and I said I wonder what my blood sugar is? She said it would be high probably since we just ate and had wine and dessert but would test it for me with his meter, it was on the low side which she thought was weird. I told the endo my dad has low blood sugar and she dismissed that as a precurser for diabetes (I guess his doctor is not as educated as she is....) she did say my glucouse would be tested in the medabolic rate test and that I could go right away no need to fast so we will see what it ends up as. When I was pregnant they had me drink some sugar stuff to test for diabetes and I was fine although that was 16 years ago
one last thing, I wanted to thank you all for the support, this has been so sucky and it has been wonderful having strangers who will help you
She does have to give you your test results if you ask. Also, the lab has to provide them to you upon request, but there might be a "waiting period", i.e. you can't have them for seven days or something to that effect. What are they afraid we're going to do with them?
I have been reading your posts and I really feel for you!! I have had a doctor laugh at me too...I think that is deplorable...they do work for us! The doctor that laughed at me was an ENT and I had told her that I have a lot of symptoms of Sjogren's Syndrome and she looked at my husband and laughed sarcastically and said "Is she a doctor?" Needless to say she is no longer my doctor. We don't have to take that cr*p!! Sometimes we have to weed thru several bad doctors before we find a good one who will actually listen to the patient, isn't that a strange concept, it is about our health after all and who knows our bodies better than we do...but, to laugh in our faces, that is inexcusable...also, those tests results are YOURS, you paid for them or your insurance did! I forgot to say that I am having thyroid issues too, that's why I feel for you...find your voice and make them listen, if not, move on to the next one...I'll be following your story and I wish you well... ;) joyce
well I went up to the hospital toeday and got my test myself
the TSH went from .08 to 1.09 stkill normal range
the Thryroxine free four is 1.12
she did not do a T3
something called ESR is 73 with a H next to it with expected result of 0-20
25 hydroxyvitamin 2 and 3 have a S next to them D2 <4.0
ALT has a H next to it came in at 43 expected is 0-40
vitamin b12 has an H came in as 1215 expected is 243-894
ESR westergren is a 73 with a H next to it expect 0-20 everythign else is in normal range