Ugh, sorry for all of that! I totally get how you feel.. I also demanded a full thyroid panel (which is originally how they found the hashis) JSYK, my endo said that he wants my TSH between 1-1.5 and no higher.. for two years I was at 2.5 which is 'normal' but not feeling well at all, until I made my Endo write a letter to my Doctor telling her EXACTLY the levels/threshold I was supposed to be in.. Just saying, it might be that you need a higher dose! I'm on 150 mcg and really should be bumped up again even a small little bit. I also suffer from terrible migraines/anxiety and I am sure it has something to do with my thyroid. It really affects every bit of your body
Your endocrinologist can't prescribe synthroid/levothyroxine? That's interesting.
Everyone was all happy that my TSH was 2.3 and I was like "Um, guys? How does this make sense? I was at 13. This can't be the final dosage of this medication." My doctor said since it was autoimmune that I would probably fluctuate. So, all in all, it makes sense that I may need a dosage adjustment. And part of me would like it suppressed a bit more, but it all depends on how I feel.
Ugh, sorry for all of that! I totally get how you feel.. I also demanded a full thyroid panel (which is originally how they found the hashis) JSYK, my endo said that he wants my TSH between 1-1.5 and no higher.. for two years I was at 2.5 which is 'normal' but not feeling well at all, until I made my Endo write a letter to my Doctor telling her EXACTLY the levels/threshold I was supposed to be in.. Just saying, it might be that you need a higher dose! I'm on 150 mcg and really should be bumped up again even a small little bit. I also suffer from terrible migraines/anxiety and I am sure it has something to do with my thyroid. It really affects every bit of your body
Your endocrinologist can't prescribe synthroid/levothyroxine? That's interesting.
Everyone was all happy that my TSH was 2.3 and I was like "Um, guys? How does this make sense? I was at 13. This can't be the final dosage of this medication." My doctor said since it was autoimmune that I would probably fluctuate. So, all in all, it makes sense that I may need a dosage adjustment. And part of me would like it suppressed a bit more, but it all depends on how I feel.
Thyroids, man. Little fuckers.
My Endo can prescribe, yes, but appointments with him are 6 months + where I live. When getting an adjustment it was every 6 weeks so my family Doc was dealing with the dosage adjustments to a certain extent. Easier than being on the wrong dose for 6 months until seeing Endo!
I know it is supposed to fluctuate a little (really, what doesn't in our bodies? lol) according to my Endo if I was higher than his 1.0-1.5 threshold it put me at risk for a boat-load of other crap I didn't need. Who knows! All specialists/doctors seem to have differing opinions on all things medical so why not this too? Thyroids are crazy little machines. Who knew?!!?
Here comes another newbie question!!! Lol sorry guys but all my questions so far have been answered superbly. The more you know...
I'm using FF to chart and my VIP trial expires soon. I wanted to try out other charting websites and see how I go before I purchase a membership with FF. What other websites do you recommend? I think someone mentioned kindara on one of these threads and I just wanted to hear your thoughts.
PS. I value all of your responses and hope that one day I can be as helpful and supportive x
I use the free version of FF and it works just fine. I'm cheap, and more bells and whistles would probably drive my chart stalking more crazy! FF for life!
TTC #1 starting July 2013, RE last 2014 First Angel baby lost July 11, 2014 IUI #1 with injections successful: EDD 11/24/15 Rainbow baby DD born 11/14/15 TTC#2 October 2016 Second Angel baby lost Jan 5, 2017
Your endocrinologist can't prescribe synthroid/levothyroxine? That's interesting.
Everyone was all happy that my TSH was 2.3 and I was like "Um, guys? How does this make sense? I was at 13. This can't be the final dosage of this medication." My doctor said since it was autoimmune that I would probably fluctuate. So, all in all, it makes sense that I may need a dosage adjustment. And part of me would like it suppressed a bit more, but it all depends on how I feel.
Thyroids, man. Little fuckers.
My Endo can prescribe, yes, but appointments with him are 6 months + where I live. When getting an adjustment it was every 6 weeks so my family Doc was dealing with the dosage adjustments to a certain extent. Easier than being on the wrong dose for 6 months until seeing Endo!
I know it is supposed to fluctuate a little (really, what doesn't in our bodies? lol) according to my Endo if I was higher than his 1.0-1.5 threshold it put me at risk for a boat-load of other crap I didn't need. Who knows! All specialists/doctors seem to have differing opinions on all things medical so why not this too? Thyroids are crazy little machines. Who knew?!!?
It's interesting to me to hear that your Endo wants you between 1-1.5. I've had hypo symptoms for years (always tired, always cold, brain fog, hair loss, etc) but I've had 2 primary drs tell me that no way is it my thyroid. My TSH has come back around 2.6 both times it was tested so my concerns were dismissed. If I don't have anything to worry about, then great! But I don't want to keep going along not feeling all that great all the time.
It's interesting to me to hear that your Endo wants you between 1-1.5. I've had hypo symptoms for years (always tired, always cold, brain fog, hair loss, etc) but I've had 2 primary drs tell me that no way is it my thyroid. My TSH has come back around 2.6 both times it was tested so my concerns were dismissed. If I don't have anything to worry about, then great! But I don't want to keep going along not feeling all that great all the time.
There doesn't seem to be any uniformity across the board.
First, doctors can't even agree on what the healthy range of TSH is. Some say the upper limit is 3. Others say the upper limit 4.5. Still others say that TSH shouldn't be the benchmark at all; it should be T3 and T4 levels.
Then, I've read on here of women being treated as hypothyroid with TSH that is just slightly elevated and diagnosed with Hashimoto's with antibodies that are just slightly elevated. I've read of other women who have similar TSH levels are told "You're fine." It's so hard to navigate. I'm grateful that my numbers were so clear-cut.
But here's where it gets even more dicey: once you have your foot in the door as being hypothyroid, you can ask for dosage adjustments. I see women here and people I've talked to in real life saying that they didn't feel better until their TSH was under 1. So, at 2.3 they felt crappy but they felt better at 1. People who fall at 2.3 with symptoms but no diagnosis (like you, LadyNymeria) are told they are fine and don't need anything. The whole thing is mind-boggling!
My mom has many symptoms of being hypothryoid. After I was diagnosed, I asked if she'd been tested. She said yes and that she was fine. "My numbers always come in just above the threshold for normal so they say I'm fine." WTF.
EDIT: Just to be clear - I understand why doctors aren't just handing synthroid like candy to anyone with hypothyroid symptoms and normal TSH. I totally get it. But, there's no consistency doctor to doctor. I don't know if there should be because rigidity doesn't help anything when dealing with spectrum disorders. But, I guess I'm saying that if you don't like how your doctor is treating you and isn't listening to you, then maybe you need a new doctor.
Here comes another newbie question!!! Lol sorry guys but all my questions so far have been answered superbly. The more you know...
I'm using FF to chart and my VIP trial expires soon. I wanted to try out other charting websites and see how I go before I purchase a membership with FF. What other websites do you recommend? I think someone mentioned kindara on one of these threads and I just wanted to hear your thoughts.
PS. I value all of your responses and hope that one day I can be as helpful and supportive x
I'm trying out Kindara - if you enter your data into the app, you can then look at your chart on the website and it will do peak day and coverline automatically. But you won't see that on the app unless you indicate it yourself, so what I've been doing is looking on the website and then I mark the peak day it gives me on the app. I like the dual graph feature - basically it does a bar chart of your CM and then a line graph overlay of your temps. I think to get a chart stalk here, though, the default is going to be FF for a while (that's JMO though). We're TTA for a while still, and I was intrigued by the Bluetooth BBT that Kindara is going to be making, so that's why I'm trying them out. I've still got time to see how I like things.
If you want to see a chart, this is what mine looks like (these data aren't real - I'm copying from a chart in the FF gallery to see how it works for now because I'm on the pill). You kind of have to do a screenshot to share it, or at least I haven't figure out an alternative.
It's interesting to me to hear that your Endo wants you between 1-1.5. I've had hypo symptoms for years (always tired, always cold, brain fog, hair loss, etc) but I've had 2 primary drs tell me that no way is it my thyroid. My TSH has come back around 2.6 both times it was tested so my concerns were dismissed. If I don't have anything to worry about, then great! But I don't want to keep going along not feeling all that great all the time.
There doesn't seem to be any uniformity across the board.
First, doctors can't even agree on what the healthy range of TSH is. Some say the upper limit is 3. Others say the upper limit 4.5. Still others say that TSH shouldn't be the benchmark at all; it should be T3 and T4 levels.
Then, I've read on here of women being treated as hypothyroid with TSH that is just slightly elevated and diagnosed with Hashimoto's with antibodies that are just slightly elevated. I've read of other women who have similar TSH levels are told "You're fine." It's so hard to navigate. I'm grateful that my numbers were so clear-cut.
But here's where it gets even more dicey: once you have your foot in the door as being hypothyroid, you can ask for dosage adjustments. I see women here and people I've talked to in real life saying that they didn't feel better until their TSH was under 1. So, at 2.3 they felt crappy but they felt better at 1. People who fall at 2.3 with symptoms (like you, LadyNymeria) are told they are fine and don't need anything. The whole thing is mind-boggling!
My mom has many symptoms of being hypothryoid. After I was diagnosed, I asked if she'd been tested. She said yes and that she was fine. "My numbers always come in just above the threshold for normal so they say I'm fine." WTF.
EDIT: Just to be clear - I understand why doctors aren't just handing synthroid like candy to anyone with hypothyroid symptoms and normal TSH. I totally get it. But, there's no consistency doctor to doctor. I don't know if there should be because rigidity doesn't help anything when dealing with spectrum disorders. But, I guess I'm saying that if you don't like how your doctor is treating you and isn't listening to you, then maybe you need a new doctor.
I recently had bloodwork done due to being way overdue and just in general feeling "off" (mostly tired but I tend to attribute that to being a very light sleeper). My TSH came back at 5.0. That kind surprised me since my mom has low thyroid. But my doctor said to get rechecked in a couple of months and said that she wouldn't treat it unless I was above 5.2. Now I'm wondering if I should see another doctor...I kind of just took it as meh must be just borderline high. But it sounds like medical opinions of what is high and what is not differs pretty substantially.
ETA: my mom is actually having her thyroid removed this Friday. She will have a pretty badass scar on her neck.
My Endo can prescribe, yes, but appointments with him are 6 months + where I live. When getting an adjustment it was every 6 weeks so my family Doc was dealing with the dosage adjustments to a certain extent. Easier than being on the wrong dose for 6 months until seeing Endo!
I know it is supposed to fluctuate a little (really, what doesn't in our bodies? lol) according to my Endo if I was higher than his 1.0-1.5 threshold it put me at risk for a boat-load of other crap I didn't need. Who knows! All specialists/doctors seem to have differing opinions on all things medical so why not this too? Thyroids are crazy little machines. Who knew?!!?
It's interesting to me to hear that your Endo wants you between 1-1.5. I've had hypo symptoms for years (always tired, always cold, brain fog, hair loss, etc) but I've had 2 primary drs tell me that no way is it my thyroid. My TSH has come back around 2.6 both times it was tested so my concerns were dismissed. If I don't have anything to worry about, then great! But I don't want to keep going along not feeling all that great all the time.
My family doc wasn't giving me the correct dose to be testing at 1.0-1.5 , I sat around the 2.5 for a bit so I had to go back to the Endo to write a letter explaining why he wants it at the lower range. It's apparently usual with people who have Hypo/Hashis to keep it lower than the 'normal' range. Especially where everyones body is different! I felt little to no difference from when I was at 16 to when I was testing at 3!
I would push for them to try you on a low dose of Synthroid/Levo and see how you feel (give it 8 weeks or so) I also printed off paperwork (all over the internet) of studies that showed normal ranges are different for every individual. Same as bloodpressure, weight etc. Some doctors (mine included) See that you fall within the medically deemed normal range but its not that black and white. I had to wait to see my Endo specifically for the reason you're talking about. She saw it was fine but I wasn't! I hope you can get some resolve .. I know how frustrating of a process it is. You really have to be an advocate for yourself :/
Post by LadyNymeria on Mar 11, 2015 10:10:22 GMT -5
Thanks joy and sko14. The first dr that tested me I didn't like very much anyway, but then she left the practice so it didn't matter. I was surprised to get the same response from my new primary because otherwise she's great! Always seems concerned with making sure you feel well overall, so the complete dismissal that my thyroid could possibly be causing my symptoms was surprising.
My insurance doesn't require referrals so I was considering going straight to an endo for testing since they are more specialized, but apparently the ones in the area are so busy they're only accepting new patients with referrals from their primary.
Maybe I need to push this new primary a bit more and see what happens. I hate being so tired all the time.
Side note since they can also cause fatigue - My iron and Vitamin D were also tested and both were low. She told me to take iron and Vitamin D supplements (yes, I take them hours apart!) but a few months later they haven't done anything to alleviate my symptoms.
Thanks joy and sko14. The first dr that tested me I didn't like very much anyway, but then she left the practice so it didn't matter. I was surprised to get the same response from my new primary because otherwise she's great! Always seems concerned with making sure you feel well overall, so the complete dismissal that my thyroid could possibly be causing my symptoms was surprising.
My insurance doesn't require referrals so I was considering going straight to an endo for testing since they are more specialized, but apparently the ones in the area are so busy they're only accepting new patients with referrals from their primary.
Maybe I need to push this new primary a bit more and see what happens. I hate being so tired all the time.
Side note since they can also cause fatigue - My iron and Vitamin D were also tested and both were low. She told me to take iron and Vitamin D supplements (yes, I take them hours apart!) but a few months later they haven't done anything to alleviate my symptoms.
The other thing to remember (and what I did for quite awhile) is that other things can cause feeling tired, being cold, hair falling out, etc. I explained away everything for a long time. When I went to the doctor, I was going just for a routine physical and not because I felt off. I assumed my tiredness was age, my hair was genetic (my sister's hair falls out like crazy and she's totally fine), being cold was just me, etc.
Even now, I'm wondering if my tiredness is just stress, poor diet, and general malaise.
But, there's this nagging feeling in the back of my mind. My migraines seem to have an electrolyte imbalance element, my kidneys could have a parathyroid or electrolyte imbalance element, my thyroid I know is involved in electrolytes and body energy. I just can't shake this idea that something else is in play here and could be the key to all these disparate symptoms that I have and no one has been able to find causes for yet. So, I continue with doctors.
I'm getting my thyroid and parathyroid blood panel drawn tomorrow. Huzzah.
Thanks joy and sko14. The first dr that tested me I didn't like very much anyway, but then she left the practice so it didn't matter. I was surprised to get the same response from my new primary because otherwise she's great! Always seems concerned with making sure you feel well overall, so the complete dismissal that my thyroid could possibly be causing my symptoms was surprising.
My insurance doesn't require referrals so I was considering going straight to an endo for testing since they are more specialized, but apparently the ones in the area are so busy they're only accepting new patients with referrals from their primary.
Maybe I need to push this new primary a bit more and see what happens. I hate being so tired all the time.
Side note since they can also cause fatigue - My iron and Vitamin D were also tested and both were low. She told me to take iron and Vitamin D supplements (yes, I take them hours apart!) but a few months later they haven't done anything to alleviate my symptoms.
The other thing to remember (and what I did for quite awhile) is that other things can cause feeling tired, being cold, hair falling out, etc. I explained away everything for a long time. When I went to the doctor, I was going just for a routine physical and not because I felt off. I assumed my tiredness was age, my hair was genetic (my sister's hair falls out like crazy and she's totally fine), being cold was just me, etc.
Even now, I'm wondering if my tiredness is just stress, poor diet, and general malaise.
But, there's this nagging feeling in the back of my mind. My migraines seem to have an electrolyte imbalance element, my kidneys could have a parathyroid or electrolyte imbalance element, my thyroid I know is involved in electrolytes and body energy. I just can't shake this idea that something else is in play here and could be the key to all these disparate symptoms that I have and no one has been able to find causes for yet. So, I continue with doctors.
I'm getting my thyroid and parathyroid blood panel drawn tomorrow. Huzzah.
That nagging feeling is exactly how I feel about this. Hypo is the one thing I've found that could pretty much explain any symptom I have. I kept thinking work stress could be the cause, but then I'd have good months at work and not feel any better. I'm in between not wanting to think something is wrong if there isn't anything and not wanting to ignore it in case there is something.
Good luck tomorrow. I hope you can get your levels where you need them to be to feel better quickly.
Of course not We know lots of stuffs. The other boards (particularly TTTC) is also equally as knowledgeable. The site as a whole is also working on an article section with a lot of this information in easy-to-access written pieces. An editorial board is being designed now to organize content writers, editors, implement a peer review process, etc. It'll be like The Newbie Blog, but on steriods and covering all the topics that the boards cover (TTC, TTTC, adoption, parenting, dads, infertility, etc).
That nagging feeling is exactly how I feel about this. Hypo is the one thing I've found that could pretty much explain any symptom I have. I kept thinking work stress could be the cause, but then I'd have good months at work and not feel any better. I'm in between not wanting to think something is wrong if there isn't anything and not wanting to ignore it in case there is something.
Good luck tomorrow. I hope you can get your levels where you need them to be to feel better quickly.
Hearing from others about thyroid and seeing that my Dr seems to have a higher range that he considers "normal" is helping. Mine was at like 4.9 something, and he said he wouldn't normally treat unless it was over 5, even though the lab said normal was .45 to 4.5. He's changing things one at a time, starting with vitamin D since I was very deficient. He wanted to see what was vitamin D-related and what was thyroid related.
Did anyone else have high cholesterol when they started thyroid meds? My mom (who was recently diagnosed) said she had high cholesterol when she started the meds, but it dropped down to normal levels after a while. That was the one other thing in my bloodwork that came back as not normal.
Hearing from others about thyroid and seeing that my Dr seems to have a higher range that he considers "normal" is helping. Mine was at like 4.9 something, and he said he wouldn't normally treat unless it was over 5, even though the lab said normal was .45 to 4.5. He's changing things one at a time, starting with vitamin D since I was very deficient. He wanted to see what was vitamin D-related and what was thyroid related.
Did anyone else have high cholesterol when they started thyroid meds? My mom (who was recently diagnosed) said she had high cholesterol when she started the meds, but it dropped down to normal levels after a while. That was the one other thing in my bloodwork that came back as not normal.
I beliiiiiiiiiiiiiiiieve there is a tie between hypothryoid and cholesterol. Don't quote me, but that's whizzing around the back of mind right now.
My cholesterol was normal, but it has been higher in my past.
Hearing from others about thyroid and seeing that my Dr seems to have a higher range that he considers "normal" is helping. Mine was at like 4.9 something, and he said he wouldn't normally treat unless it was over 5, even though the lab said normal was .45 to 4.5. He's changing things one at a time, starting with vitamin D since I was very deficient. He wanted to see what was vitamin D-related and what was thyroid related.
Did anyone else have high cholesterol when they started thyroid meds? My mom (who was recently diagnosed) said she had high cholesterol when she started the meds, but it dropped down to normal levels after a while. That was the one other thing in my bloodwork that came back as not normal.
I beliiiiiiiiiiiiiiiieve there is a tie between hypothryoid and cholesterol. Don't quote me, but that's whizzing around the back of mind right now.
My cholesterol was normal, but it has been higher in my past.
That's what I thought, but I wasn't sure. We're obviously going to be eating better as well, but I'm hoping some of it will be taken care of.
I'm trying out Kindara - if you enter your data into the app, you can then look at your chart on the website and it will do peak day and coverline automatically. But you won't see that on the app unless you indicate it yourself, so what I've been doing is looking on the website and then I mark the peak day it gives me on the app. I like the dual graph feature - basically it does a bar chart of your CM and then a line graph overlay of your temps. I think to get a chart stalk here, though, the default is going to be FF for a while (that's JMO though). We're TTA for a while still, and I was intrigued by the Bluetooth BBT that Kindara is going to be making, so that's why I'm trying them out. I've still got time to see how I like things.
If you want to see a chart, this is what mine looks like (these data aren't real - I'm copying from a chart in the FF gallery to see how it works for now because I'm on the pill). You kind of have to do a screenshot to share it, or at least I haven't figure out an alternative.
That's more information than I could possibly ask for (in a good way). The kindara chart looks quite nice actually. The layout is different but I'm not experienced enough to pinpoint my own ovulation unfortunately. How about the new "wink" bbt? I think it's innovative and useful but it's priced at $79 - that's the discounted price. Wondering how well that will sell...
What can I say, I'm a sucker for technology It seems like the Fitbit of bbts - you could have a plain old pedometer, orrrrr you could have a new shiny with extra features. But that's just me - I'm curious to see how it works and if it ends up being worth the price.
What can I say, I'm a sucker for technology It seems like the Fitbit of bbts - you could have a plain old pedometer, orrrrr you could have a new shiny with extra features. But that's just me - I'm curious to see how it works and if it ends up being worth the price.
Ooh.. Well if you end up getting it, do let us know how it goes! Btw I'm in Australia and I haven't checked if it's even available down under, but I'm sure that if it's a success it would prob be available worldwide. Edit: words.
lazyreader is getting one when they're available. Her siggy says you can ask her about it.
TTC #1 starting July 2013, RE last 2014 First Angel baby lost July 11, 2014 IUI #1 with injections successful: EDD 11/24/15 Rainbow baby DD born 11/14/15 TTC#2 October 2016 Second Angel baby lost Jan 5, 2017
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