Aa
Poll for the community
k im so scared my doc is misdiagnosing me so I thought I'd ask you how many of you were told there was nothing wrong with you, or misdiagnosed with something else when you had thyroid problems at first?
Q: How was your experience with the docs when you 1st went in with problems related to ur thyroid?
Q: How was your experience with the docs when you 1st went in with problems related to ur thyroid?
Hi
I was told that my blood test was normal. When I asked what the level was I was told it was near the high end and I asked for it to be treated.
My doc was happy to do that because I had many symptoms - sleeping 18hrs, breathless, weak muscles, dry skin, slow speech recall, failing memory, cold legs - etc
I believe I have had thyroid problems (on and off) since childhood - even with shocking sore throats I never had a temp - I always took a hot water bottle to bed in the heat of summer.
Anyway, after I was put on medication my 6 week blood test was worse than the first blood test - I find that rather strange.
The doc said I am hypothyroid! I am having severe symptoms but my TSH is just higher than normal. I am now on 100mcg and wonder what my blood results will be next time!
I was told that my blood test was normal. When I asked what the level was I was told it was near the high end and I asked for it to be treated.
My doc was happy to do that because I had many symptoms - sleeping 18hrs, breathless, weak muscles, dry skin, slow speech recall, failing memory, cold legs - etc
I believe I have had thyroid problems (on and off) since childhood - even with shocking sore throats I never had a temp - I always took a hot water bottle to bed in the heat of summer.
Anyway, after I was put on medication my 6 week blood test was worse than the first blood test - I find that rather strange.
The doc said I am hypothyroid! I am having severe symptoms but my TSH is just higher than normal. I am now on 100mcg and wonder what my blood results will be next time!
It took me about 2 years of searching for answers before I self diagnosed using the internet (and with results that a doctor told me were normal). I was in pretty bad state by then and weighed over 100 kg and had no energy for anything at all.
And all doctors did was tell me I ate too much / didn't exercise enough. Anyway finally got treatment and my life started getting better. with the T4 meds the lights came on. When I changed to dessicated my world had color again.
Then when i reviewed tests, prior to that terrible 2 years, I found there were already abnormal TSH results, that should have alerted someone that there was a problem. At that stage I wasn't knowledgeable enough to know that the result could mean a problem.
Anyway, all that was more than 10 years ago now. I am well managed now (and strongly self advocate and self manage my treatment. My doctor is my resource person, but I lead my team!
And all doctors did was tell me I ate too much / didn't exercise enough. Anyway finally got treatment and my life started getting better. with the T4 meds the lights came on. When I changed to dessicated my world had color again.
Then when i reviewed tests, prior to that terrible 2 years, I found there were already abnormal TSH results, that should have alerted someone that there was a problem. At that stage I wasn't knowledgeable enough to know that the result could mean a problem.
Anyway, all that was more than 10 years ago now. I am well managed now (and strongly self advocate and self manage my treatment. My doctor is my resource person, but I lead my team!
COMMUNITY LEADER
Why don't you start your post, including your symptoms and latest blood test results and the reference ranges used for them; it will all be on your lab report. I have some suggestions, but don't want to hijack this thread.
I got the same ole "exercise more, eat less, your just stressed, etc, etc, blah, blah, blah". So I stopped going to any doctors for well over 5 yrs because of their stupidity and lack of insurance. Who wants to pay out of pocket for "suggestions" that I've already been doing?!?! Started back seeing a GYN, then gained re-newed hope in the medical field and went to a primary; both women. :D GYN "caught" my hypo, as did the PCP..but the PCP my lump and sent me to the endocrinologist. I guess in a way I am lucky that it was huge ( can't say ~that~ was from lack of exercise or not eating correctly :P ) and is now gone...so they have to stay on top of my levels and my endocrinologist is fabulous...to be a man. (not saying anything bad about men..just he is the first that when he walks in the door he ask "How are you ~feeling~?)
Same stories as above. I have recently been diagonosed with hashimotos. I found taking my husband to appointments useful so he can help explain. Maybe answer questions. But I have had to fight every step of the way. I don't know a lot about it yet, but learning I need to know because the GP's don't. I don't feel like I am being listened to but then sometimes I wonder if that is because of the disconnectedness caused by the disease. Don't give up and make sure that you keep pushing. If not getting the answers one place find another.
Thyroxine has got my THS back into normal levels but my antibody results are still going up and my symptoms are not getting a great deal better. Fatigue, frustration, cognitive impairment, sore throat, muscle soreness, shortness of breath.....sore joints, emotional. I haven't had it explained to me why this is. I don't understand the results and can't focus enough to remember the numbers.
If someone can suggest something would be great.
Thyroxine has got my THS back into normal levels but my antibody results are still going up and my symptoms are not getting a great deal better. Fatigue, frustration, cognitive impairment, sore throat, muscle soreness, shortness of breath.....sore joints, emotional. I haven't had it explained to me why this is. I don't understand the results and can't focus enough to remember the numbers.
If someone can suggest something would be great.
COMMUNITY LEADER
I know your FT's were in the lower end of the ranges, and while it's possible to have thyroid issues, while having levels "in range", please be aware that there are other things that can cause your fatigue.
I think Shelley and I have both recommended that you get vitamin B12 and D tested for sure, along with thyroid antibodies - that would be a major thing as well. It may be that you will have to find a different doctor, who is more willing to work with you.
In my case, I was put down as depressed, then a hypochondriac, before finally being diagnosed with pernicious anemia, which was not a "misdiagnosis" because I do have it; it's just that the doctor didn't go far enough and check my thyroid at the same time. If he had, I might have been diagnosed about a year sooner.
I think Shelley and I have both recommended that you get vitamin B12 and D tested for sure, along with thyroid antibodies - that would be a major thing as well. It may be that you will have to find a different doctor, who is more willing to work with you.
In my case, I was put down as depressed, then a hypochondriac, before finally being diagnosed with pernicious anemia, which was not a "misdiagnosis" because I do have it; it's just that the doctor didn't go far enough and check my thyroid at the same time. If he had, I might have been diagnosed about a year sooner.
I've got a complete look at what I went through under my profile journals on the crazy things I went through.
take a peek.
take a peek.
I went to a GP in Bend, Oregon, I started having sleep problems, I also informed him of my voice getting hoarse after speaking for only five minutes, I also had a history of High BP and Cholesterol, a sore neckand depression, you would think he would have checked my thyroid, I ask him if he thought it was my thyroid and he just looked me in the face and said "No your thyroid is fine, he prescribed an anti depressant,(Trazodone) a whopping high dose of BP meds and Lipitor for the cholesterol, the blood work he ran showed a high TSH, but he still denied the fact that I had a thyroid problem, on the next visit I showed him an article from the American Society of Endo's that stated the new changes in TSH ranges, he became upset and insinuated that I was telling him his job, that was my last visit with him, I went to an Endo, he did a simple exam with me drinking water while he felt the area on my neck and said my thyroid on the right side was 2.5 times larger than it should be, after an ultrasound and blood work he diagnosed me with Hashimoto's, The other MD (Clown) is still practicing witchcraft in Bend, Or.
I was told nothing was wrong for ten years. Then when a doc found I had Hashi's almost by mistake, I was under treated for another ten years. Oh yea, one said I had Fibro - NOT.
For the most part, I've had to suggest and push my treatment and testing opinions on the medical community - in addition to paying them. What a joke our health care system has turned into.
I even tried to 'train in' a doctor in what thyroid treatment works for me so I don't have to be dependent on one doc to prescribe Erfa thyroid med for me. He, of course refused.
So I need to find another, as my endo is near retirement. No luck yet.
For the most part, I've had to suggest and push my treatment and testing opinions on the medical community - in addition to paying them. What a joke our health care system has turned into.
I even tried to 'train in' a doctor in what thyroid treatment works for me so I don't have to be dependent on one doc to prescribe Erfa thyroid med for me. He, of course refused.
So I need to find another, as my endo is near retirement. No luck yet.
Try 20 years misdiagnosed and not taken seriously. Grrrrrrrrr!
BUT that is not to say others have been treated poorly. Had I known what to be tested for originally I doubt I would have been banging my head against a brick wall. Educate yourself and be strong and kick hard!!!! If you feel too tired to argue with a doctor, take someone who sees you and knows you regularly, they can be your 'voice'
BUT that is not to say others have been treated poorly. Had I known what to be tested for originally I doubt I would have been banging my head against a brick wall. Educate yourself and be strong and kick hard!!!! If you feel too tired to argue with a doctor, take someone who sees you and knows you regularly, they can be your 'voice'
hi every1 thanks for answering so far.
hi shell, yeah im scared cause i've just been really tired, my skin got bad and also i get really out of energy fast + dizzy when i do little things like walking. i used to be so energetic and was even on track team in HS, and now i can barely walk around without gettin tired. all the docs told me they were certain it was thyroid problems!!!!!!! but the blood test said nope. k thanx
hi shell, yeah im scared cause i've just been really tired, my skin got bad and also i get really out of energy fast + dizzy when i do little things like walking. i used to be so energetic and was even on track team in HS, and now i can barely walk around without gettin tired. all the docs told me they were certain it was thyroid problems!!!!!!! but the blood test said nope. k thanx
I went to the ER several times and I was told that I had anxiety...prescribed Xanax and sent home. I was in nursing school at the time and the silly ER nurse told me..."Oh, your a nursing student. Well unfortunately when we are in nursing school we have everything our imaginations will give us....it will pass, I promise." I was like ummm...no this is not anxiety. You don't have sleep apnea with anxiety...sorry. My PCP said "well all labs look good, I can't see anything physically wrong with you." I went through the motions for about a year and I finally started to complain of shortness of breath, went to the ER...CT scan with contrast and BOOM. I have an idea of what may be causing my issues. I guess you just have to be persistent and demanding. Unfortunately, I had to abuse the system a bit to get it all figured out.
reese,
in your first post you asked for comments about your lab results and then posted your reference ranges which although a bit on the low side (FreeT's) not at the bottom of the range. Now its true that okay numbers doesn't mean you must feel okay.
You have shared a couple times that you are scared about being misdaignosed.
Can you share your symptoms that are worrying you? So far you've shared fatigue (I think thats what you mentioned) and in the another post a bit of road rage where you had to pull over to settle down.
What other symptoms are you experiencing that you think the doctor is ignoring or perhaps misdiagnosing?
in your first post you asked for comments about your lab results and then posted your reference ranges which although a bit on the low side (FreeT's) not at the bottom of the range. Now its true that okay numbers doesn't mean you must feel okay.
You have shared a couple times that you are scared about being misdaignosed.
Can you share your symptoms that are worrying you? So far you've shared fatigue (I think thats what you mentioned) and in the another post a bit of road rage where you had to pull over to settle down.
What other symptoms are you experiencing that you think the doctor is ignoring or perhaps misdiagnosing?
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
