Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Hi, I'm seriously struggling to find a new doctor. I'm so burned on doctors who seem to not care and now I have one that seems to be more interested in putting notches in his exam room by accepting patient after patient and going up to 2 years without even seeing existing patients. Even the hospital refers to him as the dr who is too busy to see patients.
Last year I went through a series of auto-immune tests (literally a year ago this week) when my joints swelled up even on dry days. The tightness and pain in my joints is often too much to deal with and I find myself icing as many as I can reach at once or slamming the naproxen to reduce swelling.
I have also been on Levothyroxine for 5 yrs. During this time of swollen joints, I was gaining weight very fast, exhausted, and generally feeling like crap. My thyroid levels had gone out of normal, however I was not able to get those numbers at the time. This resulted in my dose being moved from 25mcg (which worked for 5 years) to 50mcg.
The response I got for the joint swelling: All I can recommend is seeing an ob/gyn to find out about the joint pain. Freaking seriously? WTH is an ob/gyn going to tell me about the joint pain. Even this past week I had another doctor look at me like I was nuts when I told her that was what I was told last year. (she also knows the reputation of my doctor).
So, the past four weeks now, I have gained over 30lbs, lost all my energy (Walking the short length of my hallway causes me to be winded and light headded), I can't remember crap to save my life. My son's analogy is that I'm actually a Sim and my user keeps stepping away from the keyboard. I can't say how many times I say "I know I came here for something." Not to mention my thyroid has been swollen for 2 weeks and I literally feel as though I'm being strangled by it. It hurts to swallow and my neck and throat feel bruised.
My dr was too busy to see me, so I had to go to prompt care where the dr there said my levels were obviously off, she guestimated that my tsh was high and my t4 was low. She made the assumption that I would need to have bloodwork done weekly to get a good gauge of my levels over a period of time.
I called my dr to get the test results on Monday (prompt care was Friday). I was told my levels were normal. I flipped out and asked how that can be so given all the other symptoms. The cluster of symptoms caused the nurse to jump and say she would put the info in front of the dr and call me back.
I received an urgent vmail to call back (I was at work which meant phone tag). I called, sat on hold for 20 minutes, then was asked if I was currently taking thyroid medication. WHAT???? ARE YOU FREAKING KIDDING ME???? DUH!!!! I'm the patient that calls to remind them every 4 months to update the prescription with the pharmacy so I can pick up my Levo. Of course I'm taking it. They said they were previously mistaken that my T3 and T4 were normal and the TSH was slightly elevated.
No call, and they were getting close to their closing time so I called them. My script was being raised to 75mcg and I need new blood work in 6-8 weeks. (Not weekly, 6-8 weeks)
I took the higher dose, and called today to find out exactly what my numbers were and what they felt "normal" was.
T3: 110 (normal is 70-170)
T4: 6.0 (normal is 5.5-11)
TSH: 14.2 (normal is 0.47-4.68)
The T4 is why the other dr felt I needed to be checked weekly because it can slip back and forth signalling a bigger problem. Her comments were that I have the potential of having a more serious thyroid disease due to the high TSH and low T4. My dr office is trying to say there is nothing wrong with my T4 being half a point into the normal levels for this blood test... the problem is my pituitary.
The problem is, I called back to the prompt care who reiterated what the previous dr said that my T4 is too far at the low end of normal to be considered a consistent normal given how high my TSH is just to reach that level.
Not to mention, what I'm reading regarding these levels is that high TSH and low T4 is confirmation that the problem is NOT pituitary like my dr (who I haven't seen in person since last year) claims it is.
I've been trying to find another dr. I would love to have the dr I saw at the prompt care, but she's only a prompt care physician without her own caseload.
I'm going to be calling her tomorrow to consult on what doctor she would recommend.
Does anyone else have experience with levels and symptoms like this. The swollen thyroid freaks me out a bit because of how much it hurts. I'm also really angry with my current doctor who clearly couldn't care less.
Thanks for hearing me out and thanks a bunch to anyone who read all the way through this.
Last year I went through a series of auto-immune tests (literally a year ago this week) when my joints swelled up even on dry days. The tightness and pain in my joints is often too much to deal with and I find myself icing as many as I can reach at once or slamming the naproxen to reduce swelling.
I have also been on Levothyroxine for 5 yrs. During this time of swollen joints, I was gaining weight very fast, exhausted, and generally feeling like crap. My thyroid levels had gone out of normal, however I was not able to get those numbers at the time. This resulted in my dose being moved from 25mcg (which worked for 5 years) to 50mcg.
The response I got for the joint swelling: All I can recommend is seeing an ob/gyn to find out about the joint pain. Freaking seriously? WTH is an ob/gyn going to tell me about the joint pain. Even this past week I had another doctor look at me like I was nuts when I told her that was what I was told last year. (she also knows the reputation of my doctor).
So, the past four weeks now, I have gained over 30lbs, lost all my energy (Walking the short length of my hallway causes me to be winded and light headded), I can't remember crap to save my life. My son's analogy is that I'm actually a Sim and my user keeps stepping away from the keyboard. I can't say how many times I say "I know I came here for something." Not to mention my thyroid has been swollen for 2 weeks and I literally feel as though I'm being strangled by it. It hurts to swallow and my neck and throat feel bruised.
My dr was too busy to see me, so I had to go to prompt care where the dr there said my levels were obviously off, she guestimated that my tsh was high and my t4 was low. She made the assumption that I would need to have bloodwork done weekly to get a good gauge of my levels over a period of time.
I called my dr to get the test results on Monday (prompt care was Friday). I was told my levels were normal. I flipped out and asked how that can be so given all the other symptoms. The cluster of symptoms caused the nurse to jump and say she would put the info in front of the dr and call me back.
I received an urgent vmail to call back (I was at work which meant phone tag). I called, sat on hold for 20 minutes, then was asked if I was currently taking thyroid medication. WHAT???? ARE YOU FREAKING KIDDING ME???? DUH!!!! I'm the patient that calls to remind them every 4 months to update the prescription with the pharmacy so I can pick up my Levo. Of course I'm taking it. They said they were previously mistaken that my T3 and T4 were normal and the TSH was slightly elevated.
No call, and they were getting close to their closing time so I called them. My script was being raised to 75mcg and I need new blood work in 6-8 weeks. (Not weekly, 6-8 weeks)
I took the higher dose, and called today to find out exactly what my numbers were and what they felt "normal" was.
T3: 110 (normal is 70-170)
T4: 6.0 (normal is 5.5-11)
TSH: 14.2 (normal is 0.47-4.68)
The T4 is why the other dr felt I needed to be checked weekly because it can slip back and forth signalling a bigger problem. Her comments were that I have the potential of having a more serious thyroid disease due to the high TSH and low T4. My dr office is trying to say there is nothing wrong with my T4 being half a point into the normal levels for this blood test... the problem is my pituitary.
The problem is, I called back to the prompt care who reiterated what the previous dr said that my T4 is too far at the low end of normal to be considered a consistent normal given how high my TSH is just to reach that level.
Not to mention, what I'm reading regarding these levels is that high TSH and low T4 is confirmation that the problem is NOT pituitary like my dr (who I haven't seen in person since last year) claims it is.
I've been trying to find another dr. I would love to have the dr I saw at the prompt care, but she's only a prompt care physician without her own caseload.
I'm going to be calling her tomorrow to consult on what doctor she would recommend.
Does anyone else have experience with levels and symptoms like this. The swollen thyroid freaks me out a bit because of how much it hurts. I'm also really angry with my current doctor who clearly couldn't care less.
Thanks for hearing me out and thanks a bunch to anyone who read all the way through this.
Your doctor sounds horrible and typical of some of our experiences.I hope you can find a new one who has more availability.You deserve better!
I bet your feeling bad,especially with your tsh so high.It sounds like your under some type of flare.I hope it settles down soon.Do you have hashimotos?..I have alot of arthritis and joint pain too with my Hashis.
Your sons analogy made me giggle.lol....Sounds like he gets it and is supportive.
Hope your feeling better soon and find some answers...:)
Naturetree, funny you mention Hashimoto's. That has been mentioned since last year by everyone BUT my dr! I went through a battery of autoimmune blood tests to see if rheumatoid arthritis was a possibility. The results were negatives so I was left with the pain and swelling but no answer and his suggestion was to wait and see if anything progressed. Out of frustration, I've just lived with it because I didn't want to hear it's all in my head.
How horrible to have a doctor who cares so little of his or her patients!
I hope you are able to find a better doctor quickly! And that they will get you in immediately. Good luck!
Because you are having so many problems, I would suggest that every time you get labs have a copy sent to you. Many doctors are not aware of what blood healthy levels look like...and unfortunately you will need to monitor this for yourself.
My previous doc said everything was normal when my TSH was 6. Yeah, I know better...
You might also want to keep a symptom journal.
good luck-
I started my thyroid journey nearly 5 yrs ago as my TSH was 14.9. I had gone to the dermatologist for falling hair..she did a T test and found that it was elevated.. I have had it for years plus severe anxiety, brain fog, etc. etc. No doc ever bothered to read my symptoms into doing a T. test..better late than never I suppose!
I was on Sythroid for 3 years, now I have been on Armour T. for one year last June..
My TSH is now 0.35 I also have joint pain, that worsens on given days.
I have Hashi's My old endo who was clueless..didn't bother to do an antibodies test, my new endo did, I have raging antibodies and only one half a T. gland left due to the hashi's.
You need to get find another doctor, ask at your local pharmacy if they know which doc in your area prescribes Armour that's usually a good way to start.. At least you will be dealing with a doc who has an open mind.. So many endo's do not know what they doing with thyroid problems..
"No call, and they were getting close to their closing time so I called them. My script was being raised to 75mcg and I need new blood work in 6-8 weeks. (Not weekly, 6-8 weeks)
I took the higher dose, and called today to find out exactly what my numbers were and what they felt "normal" was.
T3: 110 (normal is 70-170)
T4: 6.0 (normal is 5.5-11)
TSH: 14.2 (normal is 0.47-4.68) "
Your doctor is an assh*le if he/she thinks that 14.2 is "normal". A healthy person shouldn't have a TSH over 1. Yours is 14.2. That's NOT normal...and not even by their laboratory standards - their normal is .47-4.68.
But, you DID say they increased your meds to 75mcg (reluctantly) - so at least when you called and they recognized their error they increased your meds.
And, it IS normal to wait 4-6 weeks before getting new labs. So, at least they were right about those two things the second time around, right? This is why it's so important to track your labs YOURSELF. Doctors are busy or don't care or make mistakes...if you keep track of it - you can be your own safe-guard against mistreatment/misdiagnosis/stupidity.
BTW: Those numbers you posted - are they FREE T3 and FREE T4? If not, you need to get those tests run even if you have to order them yourself (but not until 4-6 weeks, K?)
Our Free's tell us much more than the TSH. It tells us how much thyroid hormones are available for use by the body. Most doctors won't run this test unless you specify that you want it (and some won't then). Labcorp will do it, but that usually means you pay for it. But, it's worth it.
They're waiting 4-6 weeks because it takes that long for you body to process the increase in thyroid medication - it doesn't work like an aspirin for a headache (almost immediately) - it DOES take 4-6 weeks to start circulating in your system.
Next labs - specify you want/need FREE T3 and FREE T4 test, K? (If that's not what you listed above).
Good luck!