Hi,
I have never posted here, found this today.
I have hashimotos, and to make a long story short. I went to the doctor for like 10 years saying I didn't feel well, always tired, gained weight, hair falling out, blah blah. They would test my thyroid, call me at home and say everything was fine. I diagnosed myself with hashimotos and then I had to demand the antibody test that no one ever gave me. It confirmed it.
Its been 3 years and I am still tired, still gaining weight and still don't feel quite myself. My doctor started me at 50mcg of synthroid and then said my labs were too high, put me on 25 and wouldn't change it despite the fact of how I was feeling. I found a new doctor and saw her in March, she said she likes to use labs but also how her patient feels. She put me on 75mcg, I was hoping to see some dramatic change and lose 40 pounds, but I feel the same. I have questioned how the heck can doctors monitor Hashimotos by the same tests that couldn't even confirm this disease. I am beyond frustrated, and sick and tired of feeling sick and tired.
Be your best advocate, but if you get a doctor that will tell you how they monitor hashimots, please let me know!!
Good luck on figuring it out, it seems we didn't go to medical school, but we have to be our own doctors

If it were me, I would continue to look for someone who can help me. Ask friends and relatives about good doctors. If possible, consider going out of your town/city to find someone else. I recently changed doctors because the nurse practioner I was seeing seemed to me that she was a bit clueless. She was good about wanting me tested but didn't offer too much help. I had all the symptoms going and had been feeling terrible for almost a month and a half. Last week, I went to an ear, nose, and throat doctor who has many patients with thyroid problems. He sat and explained all my concerns to me, changed my medication from 50mcg of Levothyroxine to 30mg of Armour, and expects me to go in for testing and utlrasound in six weeks. It will be then that we will determine what works best for me. I also have bad allergies and he will be taking care of that as well. Since my visit and change in meds, I feel better. Not excellent, but better. I know it's a process and it will be slow, but at least I don't hurt all over anymore. And, I feel good that I can communicate with him. So it's a matter of continuing to look. I have heard we have a great naturopath doctor and I would consider him except I cannot afford to be self pay. And insurance won't cover. So for now, I'm happy. May try looking at other options of treatment. But do not settle for what the doctor says if you still don't feel good. We are the only ones who know how we really feel.

First off, the idea that they would tell you to ' take another pill', is absurd! When i got rechecked recently b/c of symptoms, i was on 60 mgs, and she told me to start taking 90. That's half a pill more, not a whole, and she'd retest me soon. So... it's insane that they'd jump you up a whole pill that suddenly. If your thyroid levels even out to normal and you still feel really bad, you need to start getting things checked out, like your cortisol levels. If you are hyper b/c of over medication, cut that medication! Even if your doctor doesn't tell you to. Being hyper is bad on the heart, so don't let it go to far

First off, the idea that they would tell you to ' take another pill', is absurd! When i got rechecked recently b/c of symptoms, i was on 60 mgs, and she told me to start taking 90. That's half a pill more, not a whole, and she'd retest me soon. So... it's insane that they'd jump you up a whole pill that suddenly. If your thyroid levels even out to normal and you still feel really bad, you need to start getting things checked out, like your cortisol levels. If you are hyper b/c of over medication, cut that medication! Even if your doctor doesn't tell you to. Being hyper is bad on the heart, so don't let it go to far

I agree with everything that's been said thus far.

Since Armour contains fast-acting T3 with a short half-life, it was ridiculous for you to be told to take an extra pill each week. You must've felt very hyper that day and "off" the other days.

Doctors that only look at TSH for dosing purposes are the ones that keep us sick.

My first 3 endos only tested FreeT4 and TSH. They each said they looked at both levels for dosing purposes but, I realized they were lying - they each had unrealistic goals for my TSH.

I have Graves' blocking antibodies that cause me to be hypo and my thyroid is somewhat erratic as a result.

My current thyroid doctor (#5, an internist) has me get labs every 6 wks. and has adjusted my dose to maintain my optimal FreeT4 and FreeT3 levels.

It took 15 months of dose increases to optimize those levels. However, by making very small dose adjustments since optimizing my levels, my doctor has been able to keep me symptom-free.....it's awesome.

Until Hashi's totally destroys the thyroid, there's a good chance the patient's FreeT4 and FreeT3 levels will fluctuate somewhat.

Getting labs and making dose adjustments with a frequency that makes sense based upon the individual's situation is the best way to keep the patient feeling good.

Treating thyroid disease is really a matter of common sense. Unfortunately, many doctors are lacking this.

I agree with everything that's been said thus far.

Since Armour contains fast-acting T3 with a short half-life, it was ridiculous for you to be told to take an extra pill each week. You must've felt very hyper that day and "off" the other days.

Doctors that only look at TSH for dosing purposes are the ones that keep us sick.

My first 3 endos only tested FreeT4 and TSH. They each said they looked at both levels for dosing purposes but, I realized they were lying - they each had unrealistic goals for my TSH.

I have Graves' blocking antibodies that cause me to be hypo and my thyroid is somewhat erratic as a result.

My current thyroid doctor (#5, an internist) has me get labs every 6 wks. and has adjusted my dose to maintain my optimal FreeT4 and FreeT3 levels.

It took 15 months of dose increases to optimize those levels. However, by making very small dose adjustments since optimizing my levels, my doctor has been able to keep me symptom-free.....it's awesome.

Until Hashi's totally destroys the thyroid, there's a good chance the patient's FreeT4 and FreeT3 levels will fluctuate somewhat.

Getting labs and making dose adjustments with a frequency that makes sense based upon the individual's situation is the best way to keep the patient feeling good.

Treating thyroid disease is really a matter of common sense. Unfortunately, many doctors are lacking this.

Sorry about the double post - this site was hanging and the double post seemed to be the result.

By the way, welcome future reality!!!

Please feel free to share your most recent labs - if your doctor is only running TSH, I suggest you ask to not only have pituitary hormone TSH checked but, the actual thyroid hormone levels - FreeT4 and FreeT3. Those are the levels that should be getting attention.

Sorry I haven't checked this sooner. Thank you everyone. I feel completely speechless. I feel soooo aweful. I thought I felt bad before, but this has been beyond what I have expected. I still feel like crap. Still have major headaches, major depression, I ache all over, tried taking the small dose yesterday (BIG mistake) hot flashes came back. So I didn't take it again today, didn't sleep last night. I'm starting to lose weight and I feel very naucious today, haven't been able to eat much because of it. I feel like I can't think straight. I'm calling my doc in the morning! This is insane.
Future: I completely agree with you! How in the world are they supposed to monitor us hashimotos patients when we fluctuate so very often without seeing us often enough and just on labs alone! She did my antibody test the first time I saw her, and then told me she wouldn't do it again since it will stay there. She did order an altrusound, i've had two done now. I have a nodule that is solid and hasn't shrunk since the last time 6 months ago I had it done. I'm dreading switching doctors again, because I would have to start all over again, but I am tempted to and to call my insurance to see what I need to do to get this thing out of me. I read a book recently that gave me so much info on thyroid disease and it confirmed everything I have been learning and feeling ever since all this started. For Hashi patients it's easier and safer to take the thyroid out and then do hormone replacement because then we wouldn't have fluctuation so often. Maybe I am just so mad, but my mother in law has had hypothyroid and they found one cystic nodule on her and they took her thyroid out right away and she has felt great since. I don't understand why they are making us wait and thet us be tortured for all this time. I'm just so upset right now.

Vanillabear

I feel your frustration and I'm sorry you are suffering so.

Please know that there are risks associated with surgery and that's one reason why doctors don't necessarily push a patient towards surgery.

Also, please know that, once a person has surgery, he/she is dependent on a static dose of meds to meet the ever-changing needs of the body.

If you do opt for surgery, you'd need a better doctor than the one you have now. Being undermedicated or overmedicated is just as much of a danger to someone with or without a thyroid.

If your mother-in-law lives somewhat near you, you just might want to ask about seeing her doctor. Networking can be a great way to find a thyroid-savvy doctor. (I found mine after a conversation with my nail tech :)

Thank cd3764, I've actually seen her doc and he is horrible! He told me he doesn't have time for my questions. I do have a facility out here called the mayo clinic and they have some endocrinologists there that I will probably look into if this doc doesn't call me back today. I've heard the clinic is really good, it's just an hour drive from where I live so that's the only reason I haven't called them, but I think I will be here shortly. I feel like my whole body went through a constant all day rollercoaster after taking the last dose. Not sure how this will get better for me. I understand the risks of surgery, I really don't want that to be my first choice, I just feel like my condition isn't taken care of properly. I shouldn't feel like my head is going to explode at any moment of the day and I shouldn't feel like I am on fire throughout the day. my joints hurt too. this is insane. I'm hoping to get some answers in the next day or so.

Hi hon, do you have any copies of your labs,it would be interesting to see what they were when he lowered you and what they were a few months ago. Maybe if you had just taken the same dose all the time, you would have been fine. I don't get where the extra pill fits in. That must have put you over the edge. Like one day you're getting 30 then one day, it's 60. That's too much of a difference, no wonder you had those symptoms,you still might for a little while, until your levels come down some.

In March my labs were:
TSH 2.71 (0.45-4.50)
T3 uptake 22.0 (23.4-42.7)
T4 9.6 (4.5-12.5)
T7 index 2.1 (1.2-4.3)
So she asked how I was feeling, I told her I was just tired still, so she said there was room to go up alittle so she said to take an extra pill a week. After that is when the headaches started and then a week before my new labs the hot flashes started.

Then here in June my labs were:
TSH 0.05 (0.45-4.50)
T4 17.3 (4.5-12.5)
T7 index 4.6 1.2-4.3)
T4 FREE 1.9 (0.8-1.7)
T3 FREE 7.3 (2.0-4.8)

You poor thing!

No wonder you feel so badly - forget about the fact that your FreeT4 level is over-range, your FreeT3 level is very, very much over-range!

((hugs))

Unfortunately, our FreeT3 level represents T3 in the bloodstream that will not decrease until the body uses it.

With your FreeT3 level being so high, didn't the doctor suggest that you stop taking meds for a short while?

I'm thinking the doctor would want to monitor your levels weekly until your FreeT3 level gets back into-range at which point you would re-start meds.

I apologize.

Your doctor had you stop meds and resume a lower dose.

I think it would have been better for your doctor to run labs to justify re-starting meds.

I can understand your thoughts about wanting your thyroid removed. It does seem that some people with Hashi's really suffer with the fluctuations that having Hashi's can mean.

Thanks cd3764, It has been a huge roller coaster! I am just so mad at my doc right now. If she doesn't change how she is supposed to be helping me, I will be seeking out another doctor. I agree, she should be monitoring me every week. She wanted me to start at a lower dose after being off for just a week, I did the first day, but right away I could tell that I am still hyperthyroid. Emmedietly after taking it, I started the headaches and hot flashes all over again, so I haven't taken it since and I am still waiting for my doctors office to call me back with what she wants me to do. I'm just at the point where I am just not going to take it and if I get a call back, I will do as instructed, but If I don't then I am going to let her know when I go in why I haven't been able to take it. If she gets mad, it's on her and her dumb office. I'm just so tired of this. we will know more in a couple of weeks unless I miraculously get a phone call soon. I've called the office 4 times now in the last week.