Frustrated!! With a capital F!!

abcwhite10

I went to get my latest blood work results from my family doctor tonight......A little background: Have been really feeling like crap since about last Aug/Sept and started my decline from feeling good about a year ago now. Have very strong family history of hypothyroidism. Switched dr's last fall when my old dr just wanted to put me on anti depressants. New dr sent me to an endo right away......endo is adamant that she will not treat ANYONE for hypothyroid if blood work falls with in a normal range (too bad there are next to no specialists in this province or I could just easily switch). Have had several different tests done and know the following: I have a multi nodular goitre on the thyroid gland with hot and cold nodules, I have a cyst on my pituitary gland (high prolactin levels led them the dig further and an MRI found this), my TSH fluctuates all the time, my B12 and iron is low (but always with in normal), have discovered that I have a heart murmur (that is innocent) that I'm sure has never been there before. Recently wore a halter monitor to see if they could figure anything out about my heart palpitations (which I've actually been getting since I was probably 12).

So, bring us forward to the present. Saw my dr on Tues and told her I was frustrated with the endo and that I knew I would not get anywhere with her as I am just a set of lab results to her and not a person with symptoms. My dr wanted to do one more set of thyroid blood work to see if anything popped out but did say that if nothing has really changed then it was time to treat my symptoms and not my lab results (YAAAY should have went back to her with my complaints before, rather than holding out hope that the endo would do something.....you know things are bad when you start hoping for bad lab results just so you can hope to feel human again!!). A TSH, T3, T4, B12, iron, prolactin, and the estrogen, testosterone, levels all that jazz was ordered. My dr was most curious about the T4 and T3 levels so she could see how my body was reacting to my TSH levels. Well apparently in this province if your TSH is normal THEY WON'T TEST THE T4 OR T3 whether the dr wants it done or not!!!!!!! How screwed up is that?? Excuse me, but if it was ordered it was for a good f&*%ing reason. My TSH is ALWAYS in a normal range because our lab range is a ridiculous spread!!

She has decided to start me on a low dose of medication anyways, based on family history, symptoms, and the fact that nothing ever falls in the middle of a normal range always top or bottom, and follow up on my symptoms and see how I am feeling and adjust that way. A question to anyone who has managed to read through my rant: Does your TSH fluctuate and where does yours sit in order for you to feel good? I know the TSH is a pituitary hormone, and not a thyroid hormone but I have lumps and bumps on both so I would hazard a guess that neither of them is functioning up to par. My TSH goes up and down all the time. It ranges from 0.5 up to about 2. I know that isn't too high (no wonder it's always "normal" our lab range normal is still set at 0.5-5) but I feel like crap and have a ridiculous amount of symptoms......

tecallahan

Wow - what a story!! I am sorry to tell you that TSH means almost nothing in regard to your thyroid health. T3 is the active hormone and until you know what that is, you really can't know how bad it is. And to answer your question, "yes" many of us have fluctuating TSH values - that can be caused by the goiters. It can also be caused by hashimoto disease - and autoimmune syndrome where you have antibodies that are attacking your own thyroid. I don't know if your province will let the doctors check for antibodies or not -- but without T3 & T4 levels, it really doesn't do much good.

You also need to know that any thyroid medication will not help if you have low ferritin/iron and/or adrenal fatigue (cortisol levels too high or too low). You probably are also Vitamin D deficient - which will make you tired and depressed.

Checkout this site: www.stopthethyroidmadness.com
Especially, these pages: http://www.stopthethyroidmadness.com/tsh-why-its-useless/
http://www.stopthethyroidmadness.com/causes-of-hypo/
http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/

abcwhite10

I know that the TSH is spit out by the pituitary and from what I understand the reasoning for wanting the T4/T3 tested was that the relationship between the two would help my dr to discern whether it was a primary hypothyroidism due to a malfunctioning thyroid gland or a secondary hypothyroidism due to a malfunctioning pituitary gland.......although in the end I don't even know if it makes a difference. I have had a cosyntropin test done which takes a baseline cortisol reading and then they introduce ACTH (I may have the order of the acronym wrong?) and take my readings again to see how my body produces cortisol in response. Unfortunately, the range is large and they don't give you a number value to reference, just a normal or abnormal. Mine came back normal but I assume like everything else I am finding, just because it's "normal" doesn't mean jack sh**! I live in a world a of publicly funded health care system which is fantastic in many ways.....but also means that the gov't sets our lab ranges according to what they can afford to spend on health care, not what is necessarily best for the patient. I'm sure it's not quite THAT simple but that's the just of it anyways. Very difficult to deal with when you are one that doesn't fall outside the range! I am glad to have found a dr that is willing to listen ME and she knows that my endo will slap her hands for medicating me but she wants to do what she feels is best for me. That being said she is fantastic, but she is a GP and like most GP's, undereducated on thyroid conditions

tecallahan

As an example -- I have High TSH right now and Low T4 -- but my T3 level is pretty good. This doesn't mean they should give me more T4 -- it means something is going on that is causing my T3 not to be absorbed by the cells -- which is what lead us to the cortisol test and finding out I have extremely low cortisol.

So - you need the whole picture - I hope you can find a way to get a holistic view of what's going on.

Terri

abcwhite10

Thank you Terri, so do I. I have learned a lot from your posts in this discussion group. I had actually stumbled upon STTM website quite some time ago and it's nice to see it get promoted here. It is a wealth of information. My dr. has put me on a very small dose of synthroid, which I am hesitant about, BUT now that I am "medicated" supposedly they will do the test she requests......totally ridiculous. I am looking into seeing a ND instead. There is one that I am interested in that is trained in conventional medicine and traditional chinese medicine and herbology. His specialty is women's hormonal issues, specifically the thyroid.........problem is I have to travel 9 hours out of province to see him :frown: Not the easiest to do when you work full time, have 3 little ones, and are limited for holidays.
I would like to know if the naturopathic dr's here in Saskatchewan use the same labs when they order bloodwork as well. Maybe I could find a good one a little closer to home.

Robin052

Wow Terri, I feel your pain. Do you live in Canada by chance? I am so clueless about Hypothyroidism. I read a lot about it but I get so confused. As long as my Endocrinologist is happy about the numbers than so am I but I still don't feel right. I also have diabetes Type 2, was born Celiac but they are not sure I truly am, have high cholesterol which may be causing liver issues and I'm a vegetarian. I'm on generic Synthroid at 50 mcg. He seems to be happy with my numbers. At the time I had lost 10 lbs but it's all come back in a very short time because I had pain in my tummy and bloating. My liver enzymes were elevated so they stopped my cholesterol medication. Waiting to see my primary. I was so happy that I lost all that weight and when it came back that fast it blew me away and decided, what the hell, might as well eat everything in sight. It's just so annoying. I was always so skinny throughout my life. Mentally I'm not dealing with it well.

I don't know what the STTM website is. Have you been on it or can anyone explain it to me. So many numbers to consider, it drives me crazy and just ready to give up. I joined www.myfitnesspal.com. It's wonderful because you put in what you've eaten and how much water, etc..It automatically tracks your calories, proteins and carbs. It's the only thing that has kept me honest because I have been lying to myself for so long.

I wish I had some miracle answers for you, I really do. I guess we are all in this fight together and I'm hoping we can help each other reach our goals. Hang in there sweetie. I'm trying as well.

Robin

abcwhite10

I'm not sure if you were asking Terri, or myself, but I am from Saskatchewan. And the STTM is just the acronym for the website www.stopthethyroidmadness.com There is a lot of helpful information - I am finding anyways. It's too bad the internet has such a bad reputation as far as medical advice. I'm always afraid to tell my dr. "so, I was reading on the internet....." I am worried she will stop listening after that.

isys5

I went to get my latest blood work results from my family doctor tonight......A little background: Have been really feeling like crap since about last Aug/Sept and started my decline from feeling good about a year ago now. Have very strong family history of hypothyroidism. Switched dr's last fall when my old dr just wanted to put me on anti depressants. New dr sent me to an endo right away......endo is adamant that she will not treat ANYONE for hypothyroid if blood work falls with in a normal range (too bad there are next to no specialists in this province or I could just easily switch). Have had several different tests done and know the following: I have a multi nodular goitre on the thyroid gland with hot and cold nodules, I have a cyst on my pituitary gland (high prolactin levels led them the dig further and an MRI found this), my TSH fluctuates all the time, my B12 and iron is low (but always with in normal), have discovered that I have a heart murmur (that is innocent) that I'm sure has never been there before. Recently wore a halter monitor to see if they could figure anything out about my heart palpitations (which I've actually been getting since I was probably 12).

So, bring us forward to the present. Saw my dr on Tues and told her I was frustrated with the endo and that I knew I would not get anywhere with her as I am just a set of lab results to her and not a person with symptoms. My dr wanted to do one more set of thyroid blood work to see if anything popped out but did say that if nothing has really changed then it was time to treat my symptoms and not my lab results (YAAAY should have went back to her with my complaints before, rather than holding out hope that the endo would do something.....you know things are bad when you start hoping for bad lab results just so you can hope to feel human again!!). A TSH, T3, T4, B12, iron, prolactin, and the estrogen, testosterone, levels all that jazz was ordered. My dr was most curious about the T4 and T3 levels so she could see how my body was reacting to my TSH levels. Well apparently in this province if your TSH is normal THEY WON'T TEST THE T4 OR T3 whether the dr wants it done or not!!!!!!! How screwed up is that?? Excuse me, but if it was ordered it was for a good f&*%ing reason. My TSH is ALWAYS in a normal range because our lab range is a ridiculous spread!!

She has decided to start me on a low dose of medication anyways, based on family history, symptoms, and the fact that nothing ever falls in the middle of a normal range always top or bottom, and follow up on my symptoms and see how I am feeling and adjust that way. A question to anyone who has managed to read through my rant: Does your TSH fluctuate and where does yours sit in order for you to feel good? I know the TSH is a pituitary hormone, and not a thyroid hormone but I have lumps and bumps on both so I would hazard a guess that neither of them is functioning up to par. My TSH goes up and down all the time. It ranges from 0.5 up to about 2. I know that isn't too high (no wonder it's always "normal" our lab range normal is still set at 0.5-5) but I feel like crap and have a ridiculous amount of symptoms......

I am in BC so I hear ya about the range frustration but at least here my doctor will test my Free T4 & Free T3. My sister is in SK and I have made her go in and get checked as I am sure her thyroid is messed up too as it runs in our family. I am in the "normal" range as well my TSH was 4.38 at one time and I could barely function but was "normal" luckily I got pregnant and that gave my thyroid a jolt.

I have found HUGE improvements using the supplment info & lifestyle changes posted on here (I itemized everything in one post if you do a search you should find it). I honestly feel 15 years younger, have energy all day (most days) and can actually think clearly and am no longer depressed. Of course I have only seen these changes for the past two months (started the journing in Jan so it takes awhile and persistence) but so worth it as I hear so many stating that the medication can be tricky and does not always help especially if dr is not helpful as seems to be the norm.

These changes likely don't work for everyone as well as they have for me, but I am hoping with consitent lifestyle changes I may be able to even avoid the medicine forever, or at least for a few more years. I think the most important changes for me are to take at least 1000ui of Vitamin D a day, eat 3 T of chai seeds daily (or at least try), 2-3T coconut oil, eating small meals every 3 hrs (roughly 300 cal each) and cardio 5-6 days per week for an hour. If someone had suggested I do all that in Jan I would have told them they are fanatics but over the past few months, making these changes slowly they have just become a habit and I feel so much better that I don't even think about slacking

tecallahan

The problem is "doctor is happy with my numbers" -- he's treating your labs without any consideration for your symptoms.
He needs to treat your symptoms! You should not have high cholesterol - your thyroid is doing that because Synthroid does not solve the symptoms of hypothyroidism. All Synthroid does is make your TSH numbers look good.

www.stopthethyroidmadness.com - and they sell a book that you can read. If you don't educate yourself and just trust the doctor, then not sure what to say.

Here's my story about cholesterol:
I took cholesterol medicine (Lipitor) for 15 years. My primary care physician wanted me to double the dosage in January, 2012 because my cholesterol was so high. Lipitor has many side effects - one is muscle cramps and pain and one is potential liver damage. It is an extremely toxic drug.

On the first day I started taking Armour thyroid in January, my ND said I could stop taking Lipitor. Within 3 months, my cholesterol was normal (171 total) and my good cholesterol was 83 - very high for my age.

So, that told me for certain that my thyroid disease and taking Synthroid was allowing my cholesterol to go up and up over the years. Now, I am normal and not taking a toxic, synthetic pill.

Just sayin' - you don't need to feel bad... there are solutions, but they are hard to find.

abcwhite10

I went to get my latest blood work results from my family doctor tonight......A little background: Have been really feeling like crap since about last Aug/Sept and started my decline from feeling good about a year ago now. Have very strong family history of hypothyroidism. Switched dr's last fall when my old dr just wanted to put me on anti depressants. New dr sent me to an endo right away......endo is adamant that she will not treat ANYONE for hypothyroid if blood work falls with in a normal range (too bad there are next to no specialists in this province or I could just easily switch). Have had several different tests done and know the following: I have a multi nodular goitre on the thyroid gland with hot and cold nodules, I have a cyst on my pituitary gland (high prolactin levels led them the dig further and an MRI found this), my TSH fluctuates all the time, my B12 and iron is low (but always with in normal), have discovered that I have a heart murmur (that is innocent) that I'm sure has never been there before. Recently wore a halter monitor to see if they could figure anything out about my heart palpitations (which I've actually been getting since I was probably 12).


So, bring us forward to the present. Saw my dr on Tues and told her I was frustrated with the endo and that I knew I would not get anywhere with her as I am just a set of lab results to her and not a person with symptoms. My dr wanted to do one more set of thyroid blood work to see if anything popped out but did say that if nothing has really changed then it was time to treat my symptoms and not my lab results (YAAAY should have went back to her with my complaints before, rather than holding out hope that the endo would do something.....you know things are bad when you start hoping for bad lab results just so you can hope to feel human again!!). A TSH, T3, T4, B12, iron, prolactin, and the estrogen, testosterone, levels all that jazz was ordered. My dr was most curious about the T4 and T3 levels so she could see how my body was reacting to my TSH levels. Well apparently in this province if your TSH is normal THEY WON'T TEST THE T4 OR T3 whether the dr wants it done or not!!!!!!! How screwed up is that?? Excuse me, but if it was ordered it was for a good f&*%ing reason. My TSH is ALWAYS in a normal range because our lab range is a ridiculous spread!!

She has decided to start me on a low dose of medication anyways, based on family history, symptoms, and the fact that nothing ever falls in the middle of a normal range always top or bottom, and follow up on my symptoms and see how I am feeling and adjust that way. A question to anyone who has managed to read through my rant: Does your TSH fluctuate and where does yours sit in order for you to feel good? I know the TSH is a pituitary hormone, and not a thyroid hormone but I have lumps and bumps on both so I would hazard a guess that neither of them is functioning up to par. My TSH goes up and down all the time. It ranges from 0.5 up to about 2. I know that isn't too high (no wonder it's always "normal" our lab range normal is still set at 0.5-5) but I feel like crap and have a ridiculous amount of symptoms......

I am in BC so I hear ya about the range frustration but at least here my doctor will test my Free T4 & Free T3. My sister is in SK and I have made her go in and get checked as I am sure her thyroid is messed up too as it runs in our family. I am in the "normal" range as well my TSH was 4.38 at one time and I could barely function but was "normal" luckily I got pregnant and that gave my thyroid a jolt.

I have found HUGE improvements using the supplment info & lifestyle changes posted on here (I itemized everything in one post if you do a search you should find it). I honestly feel 15 years younger, have energy all day (most days) and can actually think clearly and am no longer depressed. Of course I have only seen these changes for the past two months (started the journing in Jan so it takes awhile and persistence) but so worth it as I hear so many stating that the medication can be tricky and does not always help especially if dr is not helpful as seems to be the norm.

These changes likely don't work for everyone as well as they have for me, but I am hoping with consitent lifestyle changes I may be able to even avoid the medicine forever, or at least for a few more years. I think the most important changes for me are to take at least 1000ui of Vitamin D a day, eat 3 T of chai seeds daily (or at least try), 2-3T coconut oil, eating small meals every 3 hrs (roughly 300 cal each) and cardio 5-6 days per week for an hour. If someone had suggested I do all that in Jan I would have told them they are fanatics but over the past few months, making these changes slowly they have just become a habit and I feel so much better that I don't even think about slacking

Do you mind my asking if your sister has had any luck with dr's? And if so where does she doctor?