Is this weird (maybe thyroid-related)?

[ILiveInFlipFlops]

Toward the end of last year, I started taking the lowest possible dose of levothyroxine. I didn't notice any increase in energy, decrease in fatigue, etc., although my TSH numbers did go down some. The only positive effect I did notice was that the holes in my vocabulary suddenly filled in. It was weird, but some relief of the attention issues/brain fog was one of the benefits I was hoping for, so I was glad to have a little bit of improvement there. (Oh, and my periods normalized, which was the issue that started me down this whole road in the first place, but that's another issue entirely.)

 

After new bloodwork, my endo upped my dose to the next level (50 mg), but I wasn't able to start a good routine of taking it (I need to balance it against antacids, and then I got some kind of food poisoning/stomach virus that had me afraid to take anything for a couple of weeks, and then I was out of the habit). So I'm just getting back into taking it regularly again. After about 10 days, the holes in my vocabulary are filling again, but they're filling with the wrong things  :huh:   

 

For the last day or so--definitely several times today at least--I've caught myself (or a kid has caught me) using the wrong words. For example, when asked where leftover cake was, I said, "I left it upstairs on the couch." Both kids were like  :confused1: I meant it was on the dining room table. And you should have seen me trying to teach a Spanish lesson! But the odd thing was that I wasn't struggling for words like I normally am (you know when the word you want just won't come to you, and you're like, "You know...the thing that goes in the thing...the thing on top..it closes the thing? THE THING!" I'm just filling in spaces in sentences with the wrong words like they belong there.

 

I don't know. I don't think I've had a stroke or anything scary like that, but this is worse than not having the words at all! It could also just be that I'm very tired, but I tend to run short on sleep pretty much all the time, so that's not really an unusual state. I know I did it at least 5-6 times today, and then after the cake/couch thing, I started catching myself and thinking harder before I spoke, so it kind of stopped.

 

Has anyone ever experienced this?

Edited February 7, 2017 by ILiveInFlipFlops

[IfIOnly]

I haven't experienced exactly the same thing but have struggled with words too in the recent past. My thyroid has been reasonably healthy though and no meds. It's humbling. So sorry that you are going through this. :( That would be concerning. (((ILiveinFlipFlops)))

Edited February 7, 2017 by ifIonlyhadabrain

[J-rap]

I have some thyroid issues but have never experienced that.  Do you get headaches?  There's a certain type of migraine that can cause some confused speech.  

[displace]

Those symptoms would prompt me to a road of investigation if it happens again. I'd start with a pcp, neurologist, testing, everything.

 

If it was a one - off day I'd just chalk it up to maybe an illness or sleep deprivation.

[creekland]

I get speech issues like that all the time - enough that I warn classes at school about it and tell them to fill in the correct word automatically if it's obvious and ask for clarification if it isn't.  It's also common to not remember the word I want - even if it's a super common word - like plate.

 

I agree it's really frustrating - very, very frustrating.

 

And FWIW, doctors don't care.  I tell others they can blame it on the radiation I've had or old age, but radiation sounds cooler... ;)

 

There are many things folks on the Hive (or around me IRL) think doctors should care about, but when seeing an actual MD, no, they don't.

 

Just a warning for you in case you run into the same mindset.  Don't get your hopes too high.

[gardenmom5]

Toward the end of last year, I started taking the lowest possible dose of levothyroxine. I didn't notice any increase in energy, decrease in fatigue, etc., although my TSH numbers did go down some. The only positive effect I did notice was that the holes in my vocabulary suddenly filled in. It was weird, but some relief of the attention issues/brain fog was one of the benefits I was hoping for, so I was glad to have a little bit of improvement there. (Oh, and my periods normalized, which was the issue that started me down this whole road in the first place, but that's another issue entirely.)

 

After new bloodwork, my endo upped my dose to the next level (50 mg), but I wasn't able to start a good routine of taking it (I need to balance it against antacids, and then I got some kind of food poisoning/stomach virus that had me afraid to take anything for a couple of weeks, and then I was out of the habit). So I'm just getting back into taking it regularly again. After about 10 days, the holes in my vocabulary are filling again, but they're filling with the wrong things  :huh:   

 

For the last day or so--definitely several times today at least--I've caught myself (or a kid has caught me) using the wrong words. For example, when asked where leftover cake was, I said, "I left it upstairs on the couch." Both kids were like  :confused1: I meant it was on the dining room table. And you should have seen me trying to teach a Spanish lesson! But the odd thing was that I wasn't struggling for words like I normally am (you know when the word you want just won't come to you, and you're like, "You know...the thing that goes in the thing...the thing on top..it closes the thing? THE THING!" I'm just filling in spaces in sentences with the wrong words like they belong there.

 

I don't know. I don't think I've had a stroke or anything scary like that, but this is worse than not having the words at all! It could also just be that I'm very tired, but I tend to run short on sleep pretty much all the time, so that's not really an unusual state. I know I did it at least 5-6 times today, and then after the cake/couch thing, I started catching myself and thinking harder before I spoke, so it kind of stopped.

 

Has anyone ever experienced this?

 

brain fog is a symptom of hypothyroid.  here's the stopthethyroidmadness long and pathetic list of hypo symptoms.  scroll down to brain . . .

my friend with type 2 diabetes will also say/do stuff like that when her blood sugar crashes.  she has to eat.  she did it with me once and I was like . "what????"

my mom did do stuff like that with her tias . . . but you're probably young for those.

 

levo is t4 - it is synthetic.  t4 is a storage hormone that must be converted to t3 - the form which is used. it can actually make things worse by converting to reverse t3.  (I'm dealing with this right now.  I'm so not happy.  especially as my previous dr had left me underdosed too.  and now I have high cortisol.- 24 hr spit test.)

I would strongly urge you to read sttm - especially if you are also taking antacids.  read the gut section in the list.

tests you need:

FREE t3

FREE t4

reverse t3

they should be in optimal ranges.

tsh is produced by the pituitary to tell your thyroid to make thyroid hormone.

 

 

 

[ILiveInFlipFlops]

brain fog is a symptom of hypothyroid.  here's the stopthethyroidmadness long and pathetic list of hypo symptoms.  scroll down to brain . . .

my friend with type 2 diabetes will also say/do stuff like that when her blood sugar crashes.  she has to eat.  she did it with me once and I was like . "what????"

my mom did do stuff like that with her tias . . . but you're probably young for those.

 

levo is t4 - it is synthetic.  t4 is a storage hormone that must be converted to t3 - the form which is used. it can actually make things worse by converting to reverse t3.  (I'm dealing with this right now.  I'm so not happy.  especially as my previous dr had left me underdosed too.  and now I have high cortisol.- 24 hr spit test.)

I would strongly urge you to read sttm - especially if you are also taking antacids.  read the gut section in the list.

tests you need:

FREE t3

FREE t4

reverse t3

they should be in optimal ranges.

tsh is produced by the pituitary to tell your thyroid to make thyroid hormone.

 

 

Ooooohhhhhhhhhh... Actually, you may be onto something with the bolded! I ate very little yesterday (basically ate only a small breakfast) because I have stomach issues and had to make a long drive in the afternoon and didn't want to have problems while driving. I never ate lunch and didn't eat again until 5:30, which is around when the issue resolved itself! I thought I was just paying closer attention, but maybe it was because my blood sugar was higher instead. I'll make sure I eat carefully over the next few days and watch what happens. The kids will be my monitors :lol:

 

See, this is why we post these weird things here! That would never have crossed my mind. Thank you!

 

And I'll consider the rest of what you said, but actually, my endo is fantastic and has run all the other tests, so I think I'm OK there. I went in so prepared to fight, and she was ahead of me every step of the way. She's about 14 years old, which is weird for me :lol: But maybe that means she's more up on the latest research etc.? Either way, I love working with her. I'm due for more bloodwork in another four months, so we'll see what the numbers say then. Thanks!

Edited February 7, 2017 by ILiveInFlipFlops

[ILiveInFlipFlops]

Thank you to everyone else as well. Hopefully it was just a fluke thing, but I'll be keeping an eye on it. The main reason for my going on the levo in the first place was the hormonal issues I was having, and thankfully those resolved almost immediately after I started the meds. I was really hopeful that the rest would be helped too, but in the end, if it was only the hormone issues that were fixed, I'm still relieved. I am really tired of missing half my vocabulary though! I know most of us struggle with it (the infamous mommy brain) but it can be so frustrating. 

 

 

I get speech issues like that all the time - enough that I warn classes at school about it and tell them to fill in the correct word automatically if it's obvious and ask for clarification if it isn't.  It's also common to not remember the word I want - even if it's a super common word - like plate.

 

I agree it's really frustrating - very, very frustrating.

 

And FWIW, doctors don't care.  I tell others they can blame it on the radiation I've had or old age, but radiation sounds cooler... ;)

 

There are many things folks on the Hive (or around me IRL) think doctors should care about, but when seeing an actual MD, no, they don't.

 

Just a warning for you in case you run into the same mindset.  Don't get your hopes too high.

 

 

I hear you! I'm very laid back about medical stuff and don't have a lot of faith in doctors resolving unusual issues generally. Even the thyroid/hormone connection--I had to insist that my GYN run my thyroid numbers in the first place, and in the end that was the key to fixing my problem. But in the meantime, I got to have several uncomfortable, fairly invasive procedures "just in case." I feel like any problems I've had that are not straightforward/textbook, I've always had to solve myself. My GP is the worst about stuff like that, very conventional, but I'm too lazy to look for a new one at the moment, especially when there's no guarantee I'll find someone with a different mindset!

[prairiewindmomma]

It's a known thing, it just isn't written or talked about much in endocrinology. But---proof! http://ict.usc.edu/pubs/Verbal%20Memory%20Retrieval%20Deficits%20Associated%20With%20Untreated%20Hypothyroidism.pdf

[Katy]

Take a day or two off.  Put on a Netflix marathon of approved shows for the kids and get some sleep. Enough sleep to have several dreams.  Eat properly.  Take your medicines. Get at least half an hour walk in. You can't help kids if you're not taking better care of yourself.

 

If in two days this is still happening (or worse), and you don't suddenly come down with a bad cold or the flu in the mean time, you need some medical attention.   This sort of thing could be a symptom of all sorts of problems.

[Pawz4me]

I definitely had word retrieval problems before I was diagnosed with hypothyroidism, but it wasn't something that occurred in isolation. It was in conjunction with an overall mental and physical slow down. You know how you feel when you're dead tired or coming down with a bad virus and you can't think straight and it pretty much takes all your concentration just to stay upright? That's how it was. Not just word retrieval issues and being basically okay in everything else.

[creekland]

I definitely had word retrieval problems before I was diagnosed with hypothyroidism, but it wasn't something that occurred in isolation. It was in conjunction with an overall mental and physical slow down. You know how you feel when you're dead tired or coming down with a bad virus and you can't think straight and it pretty much takes all your concentration just to stay upright? That's how it was. Not just word retrieval issues and being basically okay in everything else.

 

Which, for informational purposes, is totally different than mine - just in case it matters to the OP (or anyone reading).  There is no other mental or physical slowdown with mine (other than if gaining weight is related or periods of slightly lower - low 90s - blood oxygen levels, both of which I'm also told aren't issues - the low O level is not a constant thing either).

 

I can still win strategy games (and learn new ones).  I can still make in depth plans.  I don't ever get tired doing normal things, though can get winded with more than walking on flat ground - that clears up when back on flat ground or stopping.  I just mix up and/or forget words - often - more than once per day on average.  The busier I am, the more it happens - hence - having to warn kids at school when I'm actually teaching and covering a bit of material in a certain time period.

[Ellie]

Toward the end of last year, I started taking the lowest possible dose of levothyroxine. I didn't notice any increase in energy, decrease in fatigue, etc., although my TSH numbers did go down some. The only positive effect I did notice was that the holes in my vocabulary suddenly filled in. It was weird, but some relief of the attention issues/brain fog was one of the benefits I was hoping for, so I was glad to have a little bit of improvement there. (Oh, and my periods normalized, which was the issue that started me down this whole road in the first place, but that's another issue entirely.)

 

After new bloodwork, my endo upped my dose to the next level (50 mg), but I wasn't able to start a good routine of taking it (I need to balance it against antacids, and then I got some kind of food poisoning/stomach virus that had me afraid to take anything for a couple of weeks, and then I was out of the habit). So I'm just getting back into taking it regularly again. After about 10 days, the holes in my vocabulary are filling again, but they're filling with the wrong things  :huh:   

 

For the last day or so--definitely several times today at least--I've caught myself (or a kid has caught me) using the wrong words. For example, when asked where leftover cake was, I said, "I left it upstairs on the couch." Both kids were like  :confused1: I meant it was on the dining room table. And you should have seen me trying to teach a Spanish lesson! But the odd thing was that I wasn't struggling for words like I normally am (you know when the word you want just won't come to you, and you're like, "You know...the thing that goes in the thing...the thing on top..it closes the thing? THE THING!" I'm just filling in spaces in sentences with the wrong words like they belong there.

 

I don't know. I don't think I've had a stroke or anything scary like that, but this is worse than not having the words at all! It could also just be that I'm very tired, but I tend to run short on sleep pretty much all the time, so that's not really an unusual state. I know I did it at least 5-6 times today, and then after the cake/couch thing, I started catching myself and thinking harder before I spoke, so it kind of stopped.

 

Has anyone ever experienced this?

 

Brain fog and insomnia are common hypothyroid symptoms.

 

50mg of Levo is nothing. Your doctor needs to run a more complete panel: Free T3, Free T4, and Reverse T3. TSH (thyroid stimulating hormone) is made by your pituitary gland when it knows that your thyroid is not functioning properly. Without Free T3, Free T4, and Reverse T3, you still don't know how your *thyroid* is functioning.

 

The synthetic hormone replacement (Levothyroixine is the generic; the name brand is Synthroid) only replaces T4. Your body converts T3 to T4, and so many doctors mistakenly think they only need to replace T4, but they are wrong. Your body WANTS that T3. Natural desiccated thyroid (NDT) such as NatureThroid, Armour, and WP Thyroid contain both T3 and T4. And you need to take them in appropriate doses, beginning with one grain (60-65 units), and increase it gradually (every 10 days to two weeks) until you feel better. Bad news: It's hard to find a doctor who will treat you properly. :cursing:

 

You are your own best advocate. Check out Stop the Thyroid Madness. Especially, read this long and pathetic list of symptoms (and print it out).

 

You will also want to be tested for autoimmune conditions, because many adult women who have thyroid issues have an autoimmune disease called Hashimoto's disease.

[ILiveInFlipFlops]

It's a known thing, it just isn't written or talked about much in endocrinology. But---proof! http://ict.usc.edu/pubs/Verbal%20Memory%20Retrieval%20Deficits%20Associated%20With%20Untreated%20Hypothyroidism.pdf

 

Oh, definitely. It's one of the things that ticks me off about how hard it can be to get a doctor to even test real thyroid numbers, let alone treat possible problems. We all talk about how tired we are, how foggy, how we can't remember things or words or plans, and we call it mommy brain, but how many of us may really have thyroid issues that will never be treated because we're just "tired, overworked moms"?

 

Thankfully, even on the lowest dose of the levo, that was one of the two positive changes I DID see, and I was so grateful! My past career included both writer and editor, so to lose my edge in those areas was particularly galling  :glare: I was really hoping for more energy, but I was satisfied with hormonal balance and an improvement in my vocabulary recall :lol: 

[creekland]

Oh, definitely. It's one of the things that ticks me off about how hard it can be to get a doctor to even test real thyroid numbers, let alone treat possible problems. 

 

I'm not sure that this is tough all over.  I had no problem at all getting a doctor to order those tests and that's with my poor track record with doctors.  She came up with all of them, not me, and told me it's still a controversial issue as to which numbers are best (or what levels of those numbers). 

 

That seemed to be the easy part TBH.  I have the order sitting on my kitchen table waiting for me to take it to a lab.  (I'm waiting on one more thing to be ready first, but will get it all this week.)

[gardenmom5]

Which, for informational purposes, is totally different than mine - just in case it matters to the OP (or anyone reading).  There is no other mental or physical slowdown with mine (other than if gaining weight is related or periods of slightly lower - low 90s - blood oxygen levels, both of which I'm also told aren't issues - the low O level is not a constant thing either).

 

I can still win strategy games (and learn new ones).  I can still make in depth plans.  I don't ever get tired doing normal things, though can get winded with more than walking on flat ground - that clears up when back on flat ground or stopping.  I just mix up and/or forget words - often - more than once per day on average.  The busier I am, the more it happens - hence - having to warn kids at school when I'm actually teaching and covering a bit of material in a certain time period.

 

who told you weight gain wasn't related to hypothyroid?   weight is one of the more notorious symptoms.

 

Brain fog and insomnia are common hypothyroid symptoms.

 

50mg of Levo is nothing. Your doctor needs to run a more complete panel: Free T3, Free T4, and Reverse T3. TSH (thyroid stimulating hormone) is made by your pituitary gland when it knows that your thyroid is not functioning properly. Without Free T3, Free T4, and Reverse T3, you still don't know how your *thyroid* is functioning.

 

The synthetic hormone replacement (Levothyroixine is the generic; the name brand is Synthroid) only replaces T4. Your body converts T3 to T4, and so many doctors mistakenly think they only need to replace T4, but they are wrong. Your body WANTS that T3. Natural desiccated thyroid (NDT) such as NatureThroid, Armour, and WP Thyroid contain both T3 and T4. And you need to take them in appropriate doses, beginning with one grain (60-65 units), and increase it gradually (every 10 days to two weeks) until you feel better. Bad news: It's hard to find a doctor who will treat you properly. :cursing:

 

You are your own best advocate. Check out Stop the Thyroid Madness. Especially, read this long and pathetic list of symptoms (and print it out).

 

You will also want to be tested for autoimmune conditions, because many adult women who have thyroid issues have an autoimmune disease called Hashimoto's disease.

pretty sure the conversion is t4 -> t3 and rt3..  t4 - storage, t3 - used.  people with conversion problems take direct t3 (brand cytomel).  one of the reasons is too much t4 converts to too much reverse t3, and conversion problems means you can get too much reverse t3.  I'm stuck in this mess right now, 'cause if you do this too long - it will screw up your adrenal glands which try to make up the difference with a poorly functioning thyroid.

 

sttm has a page that list the things to test - any of which could cause conversion problems.

 

I'm not sure that this is tough all over.  I had no problem at all getting a doctor to order those tests and that's with my poor track record with doctors.  She came up with all of them, not me, and told me it's still a controversial issue as to which numbers are best (or what levels of those numbers). 

 

That seemed to be the easy part TBH.  I have the order sitting on my kitchen table waiting for me to take it to a lab.  (I'm waiting on one more thing to be ready first, but will get it all this week.)

it is that tough all over.

I'm on a couple of the sttm facebook pages (they have specialty pages as well as their general thyroid page.)

the one field of medicine for which there is almost universal disdain - are endos.  one of the more common subjects to come up - are people asking for a dr in their geographical area who will actually run the tests they need/want and then prescribe the meds that will make them well.  this includes people in other English speaking countries.  (the brits are up in arms right now because of the nhs cutting what thyroid drugs they'll cover.)

 

 

 

-one of the tests you really should also do is the 24 hr cortisol saliva test - it will be able to determine how your adrenals are functioning - as they are very closely tied together.  there is a blood test - which measures both bound and unbound cortisol and therefore does not give useful information.

sttm also has a list of things you should refrain from consuming for as much as two weeks before the test to get an accurate result.

[ILiveInFlipFlops]

I'm not sure that this is tough all over.  I had no problem at all getting a doctor to order those tests and that's with my poor track record with doctors.  She came up with all of them, not me, and told me it's still a controversial issue as to which numbers are best (or what levels of those numbers). 

 

That seemed to be the easy part TBH.  I have the order sitting on my kitchen table waiting for me to take it to a lab.  (I'm waiting on one more thing to be ready first, but will get it all this week.)

 

 

Wow, that's fantastic! Consider yourself lucky then. It's generally considered to be very difficult to have a doctor take you seriously when it comes to thyroid concerns, to the point where women (and a small percentage of men) actually compile lists of doctors that offer some hope of actual knowledgeable treatment.

 

I had to argue with my GP to get her even test the numbers two years ago, in spite of how crummy I was feeling, and then she only tested one single level (and not even the most obvious one) and proclaimed me fine. I didn't know as much back then, so I just went with it. In the meantime, over the ensuing year, my hormones went completely insane. When I finally went to my GYN, I asked him to test the numbers, and he said he would, but he wouldn't treat. He only tested two numbers (but at least he got one of the important ones). When they came back elevated, he said he wanted to re-test them to be sure  :confused1:  In the meantime, he also wanted to do a couple of invasive procedures to make sure what I was experiencing wasn't cancer. 

 

So I took my results and went to an actual endocrinologist, who thankfully not only believed the numbers I had but also wanted my levels to get not just below what the lab said the levels should be, but what is generally considered optimum now (which is far below the labs' top level). And with even the smallest improvement in my thyroid numbers, suddenly my period is completely back to normal, and my brain is getting there. 

 

I can only hope that there are more doctors like yours than there seem to be! 

[Veritaserum]

Before my thyroid diagnosis, I had concerning stroke-like symptoms and my migraines were out of control. So, for me, there's a correlation between improperly treated thyroid and neurological symptoms. Once my thyroid levels were under control, the neurological symptoms resolved. That said, I did get sent to neurology for further evaluation just to make sure it wasn't something else.

[ILiveInFlipFlops]

Brain fog and insomnia are common hypothyroid symptoms.

 

50mg of Levo is nothing. Your doctor needs to run a more complete panel: Free T3, Free T4, and Reverse T3. TSH (thyroid stimulating hormone) is made by your pituitary gland when it knows that your thyroid is not functioning properly. Without Free T3, Free T4, and Reverse T3, you still don't know how your *thyroid* is functioning.

 

The synthetic hormone replacement (Levothyroixine is the generic; the name brand is Synthroid) only replaces T4. Your body converts T3 to T4, and so many doctors mistakenly think they only need to replace T4, but they are wrong. Your body WANTS that T3. Natural desiccated thyroid (NDT) such as NatureThroid, Armour, and WP Thyroid contain both T3 and T4. And you need to take them in appropriate doses, beginning with one grain (60-65 units), and increase it gradually (every 10 days to two weeks) until you feel better. Bad news: It's hard to find a doctor who will treat you properly. :cursing:

 

You are your own best advocate. Check out Stop the Thyroid Madness. Especially, read this long and pathetic list of symptoms (and print it out).

 

You will also want to be tested for autoimmune conditions, because many adult women who have thyroid issues have an autoimmune disease called Hashimoto's disease.

 

 

You know, I was just about to say that insomnia isn't an issue for me, except that I've also been thinking that I've been so sleepy these last few days as well. I was wondering if there was some kind of connection to the new med level. I definitely don't have a problem with classic insomnia, but I wonder if my "ability" to run on just a 5-6 hours of sleep a night was really just my body being out of whack. Suddenly it seems like I need 8-9 hours, when I used to be able to pop up at 6:30 and start my day. Hmmm, that's interesting.

 

She does have all those tests on my orders for June, and she did test me for antibodies in December, and both numbers came back fine. I'll have to see if I can dig up the results on that again. What should the antibody numbers be? I remember looking at them and thinking I wasn't worried.

 

I was also thinking about asking about Armour, but I wasn't sure if it was warranted. I asked here a few months about people's experience with both levo and NDT, and the results seemed to be about 50/50, so it almost didn't seem to matter. What would the justification be for asking her to switch me to NDT when the levo seems to be working pretty well? 

 

She says she thinks I'll end up on 75-100 mg, but that she wanted to go up slowly and see how I felt. I thought that seemed reasonable, given that my TSH was high but not crazy high, and my T3 number was well in the middle of the normal range. 

[gardenmom5]

Wow, that's fantastic! Consider yourself lucky then. It's generally considered to be very difficult to have a doctor take you seriously when it comes to thyroid concerns, to the point where women (and a small percentage of men) actually compile lists of doctors that offer some hope of actual knowledgeable treatment.

 

I had to argue with my GP to get her even test the numbers two years ago, in spite of how crummy I was feeling, and then she only tested one single level (and not even the most obvious one) and proclaimed me fine. I didn't know as much back then, so I just went with it. In the meantime, over the ensuing year, my hormones went completely insane. When I finally went to my GYN, I asked him to test the numbers, and he said he would, but he wouldn't treat. He only tested two numbers (but at least he got one of the important ones). When they came back elevated, he said he wanted to re-test them to be sure  :confused1:  In the meantime, he also wanted to do a couple of invasive procedures to make sure what I was experiencing wasn't cancer. 

 

So I took my results and went to an actual endocrinologist, who thankfully not only believed the numbers I had but also wanted my levels to get not just below what the lab said the levels should be, but what is generally considered optimum now (which is far below the labs' top level). And with even the smallest improvement in my thyroid numbers, suddenly my period is completely back to normal, and my brain is getting there. 

 

I can only hope that there are more doctors like yours than there seem to be! 

 

I was learning . . . and repeatedly asked my dr to run free t3 and freet4.  she required me to come in every three months (money maker for her) to renew my rx.  after putting me off for a number of visits asking about them, she outright LIED to my face about running those tests.  I didn't know it until I looked at the results (which she said were "fine".) - and the were for *totals*.  not free.  totals are completely worthless numbers as they measure both bound and unbound and don't tell you what is available for use.

 

needless to say - I switched to another dr.

 

You know, I was just about to say that insomnia isn't an issue for me, except that I've also been thinking that I've been so sleepy these last few days as well. I was wondering if there was some kind of connection to the new med level. I definitely don't have a problem with classic insomnia, but I wonder if my "ability" to run on just a 5-6 hours of sleep a night was really just my body being out of whack. Suddenly it seems like I need 8-9 hours, when I used to be able to pop up at 6:30 and start my day. Hmmm, that's interesting.

 

She does have all those tests on my orders for June, and she did test me for antibodies in December, and both numbers came back fine. I'll have to see if I can dig up the results on that again. What should the antibody numbers be? I remember looking at them and thinking I wasn't worried.

 

I was also thinking about asking about Armour, but I wasn't sure if it was warranted. I asked here a few months about people's experience with both levo and NDT, and the results seemed to be about 50/50, so it almost didn't seem to matter. What would the justification be for asking her to switch me to NDT when the levo seems to be working pretty well? 

 

She says she thinks I'll end up on 75-100 mg, but that she wanted to go up slowly and see how I felt. I thought that seemed reasonable, given that my TSH was high but not crazy high, and my T3 number was well in the middle of the normal range. 

 

you need to get the actual number and the ranges the lab uses.  then go look at the sttm pages for those labs and compare your results to optimal results.

and what t3 test was it?  free t3?  or total t3?  they were two completely different things - and free t3 is worthless.

 

don't ever use levo AND ndt together. (you can use a low dose of ndt combined with cytomel/synthetic t3).  they both contain t4(which converts to rt3), and can push your reverse t3 numbers too high.

 

people have been complaining about armour since they manufacturer made some changes.  https://stopthethyroidmadness.com/armour-vs-other-brands/

 

I use wp (and t3) because it doesn't have as many fillers.  I tend to react to fillers. . . .

 

eta: waking up in the middle of the night is a flag for adrenals.  or it could just be thyroid.

Edited February 7, 2017 by gardenmom5

[creekland]

who told you weight gain wasn't related to hypothyroid?   weight is one of the more notorious symptoms.

 

It wasn't said in relation to thyroid.  It was said it wasn't a problem with other issues - and meant that never being hungry and being able to eat limited amounts of food also wasn't a problem since I wasn't losing weight.  None of that with the doctor I saw yesterday.  Yesterday was my first visit with her.  Sorry I wasn't clear.

 

Wow, that's fantastic! Consider yourself lucky then. It's generally considered to be very difficult to have a doctor take you seriously when it comes to thyroid concerns, to the point where women (and a small percentage of men) actually compile lists of doctors that offer some hope of actual knowledgeable treatment. 

 

I really appreciate your mentioning this as it gives me more confidence in this doctor.  My brain doesn't like doctor appts at all (they are probably my #1 stressor), and I'm only trying one again because I "thought" this would be an easy thing to fix (similar to a broken bone being easy to fix - and necessary).  It might have helped my situation that I've had radiation in my past and was told that sooner or later the thyroid would go.  Time will tell what the tests say.  Maybe I'll just go get them done tomorrow rather than waiting on the other thing.  It's not a long trip to take twice, and the other one isn't a blood test.

 

I know a handful of ladies IRL who have thyroid issues and take meds for them.  No one has ever mentioned it as a problem, so hearing that it is comes as a surprise to me - and one I'm glad I heard about after yesterday's appt.  This is not an endocrinologist.  She's a GP - internal med.

 

 

Before my thyroid diagnosis, I had concerning stroke-like symptoms and my migraines were out of control. So, for me, there's a correlation between improperly treated thyroid and neurological symptoms. Once my thyroid levels were under control, the neurological symptoms resolved. That said, I did get sent to neurology for further evaluation just to make sure it wasn't something else.

 

Ooh, you've just given me hope that maybe this could clear up my other issues too.  If so... I'll be incredibly grateful.  The other issues are very annoying to live with at times - esp if I'm in a bad mood.

 

I know it's no guarantee.  I don't even know if my thyroid is having issues yet, but the hope is a nice dream for a day (or more).  I guess it's like being given a lottery ticket... dreams of "what ifs!"

[gardenmom5]

It wasn't said in relation to thyroid.  It was said it wasn't a problem with other issues - and meant that never being hungry and being able to eat limited amounts of food also wasn't a problem since I wasn't losing weight.  None of that with the doctor I saw yesterday.  Yesterday was my first visit with her.  Sorry I wasn't clear.

 

 

 

 

 

Ooh, you've just given me hope that maybe this could clear up my other issues too.  If so... I'll be incredibly grateful.  The other issues are very annoying to live with at times - esp if I'm in a bad mood.

 

I know it's no guarantee.  I don't even know if my thyroid is having issues yet, but the hope is a nice dream for a day (or more).  I guess it's like being given a lottery ticket... dreams of "what ifs!"

 

the lack of appetite can be thyroid related.

 

the long and pathetic list of hypothyroid symptoms was assembled by patients whose symptoms cleared up after, finally,  getting optimally treated.

 

it is at least twice as long as any dr will give you - and probably longer.

https://stopthethyroidmadness.com/long-and-pathetic/

[Ellie]

You know, I was just about to say that insomnia isn't an issue for me, except that I've also been thinking that I've been so sleepy these last few days as well. I was wondering if there was some kind of connection to the new med level. I definitely don't have a problem with classic insomnia, but I wonder if my "ability" to run on just a 5-6 hours of sleep a night was really just my body being out of whack. Suddenly it seems like I need 8-9 hours, when I used to be able to pop up at 6:30 and start my day. Hmmm, that's interesting.

 

She does have all those tests on my orders for June, and she did test me for antibodies in December, and both numbers came back fine. I'll have to see if I can dig up the results on that again. What should the antibody numbers be? I remember looking at them and thinking I wasn't worried.

 

I was also thinking about asking about Armour, but I wasn't sure if it was warranted. I asked here a few months about people's experience with both levo and NDT, and the results seemed to be about 50/50, so it almost didn't seem to matter. What would the justification be for asking her to switch me to NDT when the levo seems to be working pretty well? 

 

She says she thinks I'll end up on 75-100 mg, but that she wanted to go up slowly and see how I felt. I thought that seemed reasonable, given that my TSH was high but not crazy high, and my T3 number was well in the middle of the normal range. 

 

If you are hypo, then absolutely Armour (or any other NDT) is warranted. It doesn't matter that your TSH isn't "crazy high." And you need to be sure you're talking about *Free* T3, not T3. We don't care about T3, or T4, or total T3 or total T4; we only care about Free T3, Free T4, and Reverse T3. I thought for many years that I was ok, even though my TSH (never had anything except that :cursing: ) was as high as 9. My symptoms crept into my life; they weren't the ones that screamed. Hashi's has a genetic factor (my mother had Lupus), but it also needs a trigger. Twenty years of undermedication can be that trigger, and that's what I believe was what happened to me.

 

Your Free T3 should be in the *upper fourth* of your lab's levels; Free T4 should be in the upper half; TSH in the lower fourth. We don't ever care about "normal" when it comes to thyroid levels.

 

 Has your doctor ordered an ultrasound of your thyroid? I also have no antibodies, but I have nodules. Nodules = Hash's.

[gardenmom5]

If you are hypo, then absolutely Armour (or any other NDT) is warranted. It doesn't matter that your TSH isn't "crazy high." And you need to be sure you're talking about *Free* T3, not T3. We don't care about T3, or T4, or total T3 or total T4; we only care about Free T3, Free T4, and Reverse T3. I thought for many years that I was ok, even though my TSH (never had anything except that :cursing: ) was as high as 9. My symptoms crept into my life; they weren't the ones that screamed. Hashi's has a genetic factor (my mother had Lupus), but it also needs a trigger. Twenty years of undermedication can be that trigger, and that's what I believe was what happened to me.

 

Your Free T3 should be in the *upper fourth* of your lab's levels; Free T4 should be in the upper half; TSH in the lower fourth. We don't ever care about "normal" when it comes to thyroid levels.

 

 Has your doctor ordered an ultrasound of your thyroid? I also have no antibodies, but I have nodules. Nodules = Hash's.

 

:iagree:   and when on ndt  - it doesn't matter if your tsh is uber low.  (mine is 0.045).   all that means is your pituitary is happy it doesn't have to kick your thyroid into gear.

 

what matters .. are the free t3, free t4 and reverse t3.  (do not let your dr do totals. so, not worth the time or money.)

 

someone thought I was hyper -   not possible with how high my reverse t3 was . . . . 24. . . . .

 

yeah. and about "normal". . . do you want your test results to be compared  to people who are hypothyroid and your dr tell you your "normal"?  you want optimal.

[threeofakind]

I experienced that quite a bit several months ago and was diagnosed with Hashimoto's.  All my thyroid levels were within normal range, but I had several symptoms (such as yours, scary!) and have nodules growing so that's why it was caught.  Otherwise my numbers were all 'within normal range'.  I have made diet changes and will continue to do make other changes as needed and that has helped me so far, but I am okay with small steps to make big changes.  I like the thyroid pharmacist and other thyroid websites, very informative!

 

Sorry if I missed it, but did you get your thyroid antibodies checked?  That was another part of my diagnosis.

 

Good luck!

[lavender's green]

One of my weirder pregnancy symptom is using the incorrect words. Or forgetting what I'm talking about right in the middle of a sentence. Or I'll forget where I live and everything about my home. I always bug my midwives to run thyroid (a doctor I had a while back told me to keep an eye on thyroid for a different reason, and thyroid issues run in the family) and they're always so hesitant, like "why do you think this is needed? Hmm, well, if It's really important to you we'll run the labs." And I get the feeling it's only for the totals, because all I ever hear back is "yep, nothing to see here." I should read into this more and really advocate for the correct tests and to know the numbers - I thought I already was advocating for myself!

 

Sorry I don't have any advice, OP, but the hive is teaching me a lot!

 

:lurk5: 

 

PS, why are doctors and midwives so hesitant about really delving into potential thyroid issues?

[gardenmom5]

One of my weirder pregnancy symptom is using the incorrect words. Or forgetting what I'm talking about right in the middle of a sentence. Or I'll forget where I live and everything about my home. I always bug my midwives to run thyroid (a doctor I had a while back told me to keep an eye on thyroid for a different reason, and thyroid issues run in the family) and they're always so hesitant, like "why do you think this is needed? Hmm, well, if It's really important to you we'll run the labs." And I get the feeling it's only for the totals, because all I ever hear back is "yep, nothing to see here." I should read into this more and really advocate for the correct tests and to know the numbers - I thought I already was advocating for myself!

 

Sorry I don't have any advice, OP, but the hive is teaching me a lot!

 

:lurk5:

 

PS, why are doctors and midwives so hesitant about really delving into potential thyroid issues?

 

I have a dear friend I met when I was first pg with 1ds... .  a few years later, when I was being super spacey - she was wondering if I was pg... that was before I even suspected I was pg with 2ds.

from what I know now  . . . I was probably thyroid related.  I had symptoms FOR YEARS (and went to the dr about them) FOR YEARS before I was ever tested for thyroid.

[creekland]

FWIW, almost anyone in the US wanting to get Thyroid levels tested can do so on their own using this online testing service:

 

https://directlabs.com/Default.aspx?&catid=94&language=en-US&tabid=55

 

I see residents of NJ, NY, MD, and RI aren't allowed, but the rest of us are.

 

There are oodles of other test options too if desired.

 

NOTE:  I have never used this service, but a Hive member gave me the link and I've kept it just in case I ever want to use it.

[Paige]

I have always done that. My doctors don't care. I think it's a kind of aphasia but since I was gifted verbally as a kid it was no big deal. My thyroid started messing up a few years ago. It was very borderline according to the numbers and labs but I could really feel that I was off. I started getting much worse with the aphasia and even spacing out and losing time or getting lost before I got my thyroid medication. I would be driving on a familiar route and find myself 5min past my destination wondering how I missed my turn and where I was. I was losing my keys and phone all the time, and blanking out on simple math when I was teaching. I was getting concerned. The doctor had me count backwards from 100 by 7s, asked me some other mental questions and I passed easily, so he said I seemed fine, but he was treating the thyroid just in case. My brain has cleared up and I feel so much better! I still have the aphasia- using the wrong word- that I've had since I was a kid, but the rest is gone. 

[Ellie]

I experienced that quite a bit several months ago and was diagnosed with Hashimoto's.  All my thyroid levels were within normal range, but I had several symptoms (such as yours, scary!) and have nodules growing so that's why it was caught.  Otherwise my numbers were all 'within normal range'.  I have made diet changes and will continue to do make other changes as needed and that has helped me so far, but I am okay with small steps to make big changes.  I like the thyroid pharmacist and other thyroid websites, very informative!

 

Sorry if I missed it, but did you get your thyroid antibodies checked?  That was another part of my diagnosis.

 

Good luck!

 

My numbers (actually, only TSH; no one tested Free T3 and Free T4 for 20 years) were always in the "normal" range, too. Happily, I learned that my numbers needed to be optimal, not normal. I am now the picture of optimal, thanks to almost 5 grains of NatureThroid. It is my miracle drug, lol.