Aa
Knowing what is normal?
In October, I was diagnosed as hypothyroid and started Levothyroxine (50mcg). Last month, I was also diagnosed with Hashimoto's. A few of my symptoms have gotten a bit better, some of them went away, but are now starting to come back. In the past couple of weeks, I have once again started feeling extremely fatigued, feeling pressure in my throat (comes and goes), breaking out in hives (small areas), and having almost daily migraines.
Is it normal to have symptoms return and maybe even go away again, or is this a sign that an adjustment needs to be made in my meds? I have a check up in two weeks. I am wondering if I should just wait or if I need to go ahead and schedule an earlier appointment (especially since it will take two weeks to get labs back).
Is it normal to have symptoms return and maybe even go away again, or is this a sign that an adjustment needs to be made in my meds? I have a check up in two weeks. I am wondering if I should just wait or if I need to go ahead and schedule an earlier appointment (especially since it will take two weeks to get labs back).
The order says T3, T4, and T3 Re-uptake. I also have a scan for the pressure, which is my biggest concern. The fact that the doctors have labeled me as allergic until now, and still advise me to keep an EpiPen (despite testing that shows I am not allergic) worries me. I never know if I am one step away from needing an EpiPen or if I am suffering from myexdema, in which case using an EpiPen might not be as safe?
I am not sure, but I think the new dose of Levo might actually be closer to where it needs to be. A lot of my worst symptoms are starting to go away now, and the hives that have been on my neck since my thyroid tanked are starting to fade.
Until now, I didn't know that an ENT could actually be someone to see about thyroid. It makes sense, but I just never thought about it. So far, I have not found anyone else in a 2 hour radius that specializes in thyroid conditions. Transportation that far off is a bit of a challenge. However, I just read that the doctor my ENT consulted has a special interest in thyroid and parathyroid disorders, and he is a part of the same medical group.
The ENT did also say that they will keep a close eye on symptoms. My GP has been solely concerned with TSH levels. He kept prescribing 3 mo at one strength, yet my symptoms were coming back or getting worse at 4-6 weeks.
Thanks for the encouragement and guidance.
I am not sure, but I think the new dose of Levo might actually be closer to where it needs to be. A lot of my worst symptoms are starting to go away now, and the hives that have been on my neck since my thyroid tanked are starting to fade.
Until now, I didn't know that an ENT could actually be someone to see about thyroid. It makes sense, but I just never thought about it. So far, I have not found anyone else in a 2 hour radius that specializes in thyroid conditions. Transportation that far off is a bit of a challenge. However, I just read that the doctor my ENT consulted has a special interest in thyroid and parathyroid disorders, and he is a part of the same medical group.
The ENT did also say that they will keep a close eye on symptoms. My GP has been solely concerned with TSH levels. He kept prescribing 3 mo at one strength, yet my symptoms were coming back or getting worse at 4-6 weeks.
Thanks for the encouragement and guidance.
COMMUNITY LEADER
I'm not a pessimist, but the problem with waiting until tomorrow to find out what's being tested is that it can't be changed without the doctor's order, so if they are testing for obsolete parameters, you might still be out of luck.
Did the doctor give you an order for the labs? If so, you should be able to look on it and see what was ordered.
You gained a lot of ground by getting sent to the ENT - and actually having one willing to listen; that's where I first gained ground, too... from the ENT, I got referred to an endo, and while I've had issues because of a horribly low TSH, I've managed to climb back up off the ground...... because of my age and other issues, I don't expect to feel like spring chicken, but I do feel better than I have in a very long time.
Wish you the best.
Did the doctor give you an order for the labs? If so, you should be able to look on it and see what was ordered.
You gained a lot of ground by getting sent to the ENT - and actually having one willing to listen; that's where I first gained ground, too... from the ENT, I got referred to an endo, and while I've had issues because of a horribly low TSH, I've managed to climb back up off the ground...... because of my age and other issues, I don't expect to feel like spring chicken, but I do feel better than I have in a very long time.
Wish you the best.
Thanks for the feedback! I will be going for the test tomorrow, so I will find out more then about what is actually being tested.
I know I have to be more assertive. I've been fighting this for 10 years, and sometimes I just get tired of begging and pleading, only to nowhere. Even though this is only a small amount of ground I've gained, it does make me feel like I may actually be able to push through to get the answers I need.
I'm glad that you are all here to help me sort things out :) Hopefully, someday soon I'll get to the other side and be able to offer someone else just as much help.
I know I have to be more assertive. I've been fighting this for 10 years, and sometimes I just get tired of begging and pleading, only to nowhere. Even though this is only a small amount of ground I've gained, it does make me feel like I may actually be able to push through to get the answers I need.
I'm glad that you are all here to help me sort things out :) Hopefully, someday soon I'll get to the other side and be able to offer someone else just as much help.
COMMUNITY LEADER
Good that you found a doctor who would listen and get a second opinion, but I still have concerns.
You should not have been started at 88-100 mcg, but probably should have been raised to those levels by now....... any doctor who starts at a high level is asking for trouble; they should always start at a low dose and work up slowly, but they do need to be willing to raise the dosage.......
I do hope that lab order for T3 and T4 are the frees and not total.... T3 uptake is considered outdated and of little value...... please verify that the T3 and T4 are for the frees, if not, call the doctor back and request those, because tests for totals are also obsolete and of little value. Without testing for the Free T3 and Free T4, this doctor, too will leave you ill.
You should not have been started at 88-100 mcg, but probably should have been raised to those levels by now....... any doctor who starts at a high level is asking for trouble; they should always start at a low dose and work up slowly, but they do need to be willing to raise the dosage.......
I do hope that lab order for T3 and T4 are the frees and not total.... T3 uptake is considered outdated and of little value...... please verify that the T3 and T4 are for the frees, if not, call the doctor back and request those, because tests for totals are also obsolete and of little value. Without testing for the Free T3 and Free T4, this doctor, too will leave you ill.
I have not posted in a while because I have been so overwhelmed by the lack of help that I have gotten from medical professionals thus far. My GP told me in January that he didn't think we needed to do anything other than TSH tests and there was no other recommended treatment for hypothyroid. Since I couldn't seem to find the right kind of doctor, I just resigned myself to muddling through the best I could.
In January, my level was a little over 7, which was down from 10 in October, but still high. Fortunately and ironically though, the pressure in my throat and hives worsened about a month ago, forcing me to go back to him to ask for help. This time he decided to refer me to an ENT for an ultrasound.
My appointment was today, and I am feeling a lot more confident after speaking with the doctor. He spent an hour talking with me and consulting with another doctor on my case. It was so wonderful to finally have someone talk to me about all of my symptoms and take the time to get a second opinion. He was shocked that my doctor started (and still has) me on such a low dose of Levothyroxine (75 mcg). He said that with my TSH levels and TPOAb levels alone, he would have started with 88-100 mcg. He also could not understand why, with all the blood work that had been done, there were no results for T4, T3, and T3 Uptake, as well as a scan or ultrasound due to the pressure. I left the office with an order for the scan, new bloodwork (TSH, T4, T3, and T3 Uptake), a prescription for 100 mcg Levothyroxine, and a follow up appointment in 2 weeks.
He did tell me that he thinks that until we get my hormones leveled out, I will continue to have a lot of the symptoms I have been battling for the past seven years.
Finally, a doctor who doesn't make me feel like I'm crazy!! :D
In January, my level was a little over 7, which was down from 10 in October, but still high. Fortunately and ironically though, the pressure in my throat and hives worsened about a month ago, forcing me to go back to him to ask for help. This time he decided to refer me to an ENT for an ultrasound.
My appointment was today, and I am feeling a lot more confident after speaking with the doctor. He spent an hour talking with me and consulting with another doctor on my case. It was so wonderful to finally have someone talk to me about all of my symptoms and take the time to get a second opinion. He was shocked that my doctor started (and still has) me on such a low dose of Levothyroxine (75 mcg). He said that with my TSH levels and TPOAb levels alone, he would have started with 88-100 mcg. He also could not understand why, with all the blood work that had been done, there were no results for T4, T3, and T3 Uptake, as well as a scan or ultrasound due to the pressure. I left the office with an order for the scan, new bloodwork (TSH, T4, T3, and T3 Uptake), a prescription for 100 mcg Levothyroxine, and a follow up appointment in 2 weeks.
He did tell me that he thinks that until we get my hormones leveled out, I will continue to have a lot of the symptoms I have been battling for the past seven years.
Finally, a doctor who doesn't make me feel like I'm crazy!! :D
COMMUNITY LEADER
When you get the results, please post them, so we can help assess your situation and possibly provide suggestions, regarding treatment.
Thanks Barb135 & goolarra!! Your answers make me feel better, and now I know to go ahead and get things moving when my symptoms continue to get worse.
Unfortunately, the lab used by most doctors in this area does take two weeks to get results back. I have had blood tests done by two different doctors in recent months, both ended up going to the same company, both took 2 weeks.
I will check in with the Dr's office tomorrow to see if I can get the tests done early, as you suggested Barb. I will also be sure to get FT3 & FT4, goolarra, as these have never been tested before.
Unfortunately, the lab used by most doctors in this area does take two weeks to get results back. I have had blood tests done by two different doctors in recent months, both ended up going to the same company, both took 2 weeks.
I will check in with the Dr's office tomorrow to see if I can get the tests done early, as you suggested Barb. I will also be sure to get FT3 & FT4, goolarra, as these have never been tested before.
Early stages of Hashi's can be difficult to treat. As the thyroid is being attacked by antibodies, it puts out varying amounts of thyroid hormones. Thyroid function is being compromised all the time, so meds adjustments have to keep up with declining function.
Selenium can somtimes help with pressure in the throat. Be sure to follow package directions as selenium can be toxic in higher doses.
It shouldn't take two weeks for labs to come back (I get mine the next morning). My guess is that your doctor gets them in a day or two as well. However, if it really takes that long, then you should have labs run so that you have them by your check up. Be sure to request FT3 and FT4 as well as TSH. Free T3 and free T4 are much more important than TSH in determing meds.
Selenium can somtimes help with pressure in the throat. Be sure to follow package directions as selenium can be toxic in higher doses.
It shouldn't take two weeks for labs to come back (I get mine the next morning). My guess is that your doctor gets them in a day or two as well. However, if it really takes that long, then you should have labs run so that you have them by your check up. Be sure to request FT3 and FT4 as well as TSH. Free T3 and free T4 are much more important than TSH in determing meds.
COMMUNITY LEADER
We've had members report symptoms getting worse, as their body tries to adjust to hormones, it's been doing without; however, it's typical to retest at approximately 6 week intervals to make sure medication is right for you. Additionally, it takes time for your body to "heal", since you have really been ill, even if symptoms weren't real bad. The worse your symptoms were, the longer it might take for you to get well.
With Hashimoto's, the antibodies attack your thyroid, to destroy it; as the destruction progresses, your thyroid will produce less and less hormones, which make you feel more hypo. Throughout this process, you will, probably, need higher doses of replacement medication in order to feel well.
If what I'm understanding is correct, you will see your doctor in 2 weeks, for a check up, they will draw blood and it would be another 2 weeks before you'd go back to get results, which means that you might actually be 4 weeks out from a med adjustment. This is how my previous doctor used to operate. Am I somewhere near correct?
If this is right, you might want to ask if you can go get the blood draw now, so when you go for your check up in 2 weeks, they will already have results.
If I'm way off, please explain the process your doctor uses, so we can offer better suggestions.
My current pcp gives me a lab order and about a week before my appointment, I go to the lab (the one my insurance requires), and by the time of my appointment, they have my results... I've actually requested for my endo to mark on the lab sheet to "cc pt", which means "copy patient", which allows the lab to send me a copy to my home, so I have the results in hand, when I show up for my appointment.
You might want to try one of these approaches, so your labs will be available when you see the doctor.........
With Hashimoto's, the antibodies attack your thyroid, to destroy it; as the destruction progresses, your thyroid will produce less and less hormones, which make you feel more hypo. Throughout this process, you will, probably, need higher doses of replacement medication in order to feel well.
If what I'm understanding is correct, you will see your doctor in 2 weeks, for a check up, they will draw blood and it would be another 2 weeks before you'd go back to get results, which means that you might actually be 4 weeks out from a med adjustment. This is how my previous doctor used to operate. Am I somewhere near correct?
If this is right, you might want to ask if you can go get the blood draw now, so when you go for your check up in 2 weeks, they will already have results.
If I'm way off, please explain the process your doctor uses, so we can offer better suggestions.
My current pcp gives me a lab order and about a week before my appointment, I go to the lab (the one my insurance requires), and by the time of my appointment, they have my results... I've actually requested for my endo to mark on the lab sheet to "cc pt", which means "copy patient", which allows the lab to send me a copy to my home, so I have the results in hand, when I show up for my appointment.
You might want to try one of these approaches, so your labs will be available when you see the doctor.........
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