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Posted (edited)

I don't know what to do. Youngest, 18, has always tested outside the norm in thyroid tests. The consensus was that since there were no symptoms she was just an outlier. Now, all of a sudden her hair seems thin, she's cold all the time, she's tired, her skin is crazy dry, and she's achy. 

The problem is she also was born with some airway abnormalities and has had issues with the left lung so we also are trying to avoid this new virus. Our doctor's office is usually quite crowded and the lab we use is attached. There are a few confirmed cases close to us so I assume that means we have many others.

Is the thyroid issue something that is OK waiting a few weeks? I have no experience with it so have no idea.

Edited by Joker
Posted
9 minutes ago, Joker said:

I don't know what to do. Youngest, 18, has always tested outside the norm in thyroid tests. The consensus was that since there were no symptoms she was just an outlier. Now, all of a sudden her hair seems thin, she's cold all the time, she's tired, her skin is crazy dry, and she's achy. 

The problem is she also was born with some airway abnormalities and has had issues with the left lung so we also are trying to avoid this new virus. Our doctor's office is usually quite crowded and the lab we use is attached. There are a few confirmed cases close to us so I assume that means we have many others.

Is the thyroid issue something that is OK waiting a few weeks? I have no experience with it so have no idea.

First of all, you need to see a new doctor. She should have been treated long, long ago. Seriously. She has probably been symptomatic all along; your doctors just didn't know all the symptoms, which brings me back to your getting a new doctor. *I* would not wait a few weeks before doing something. I would be all over this. She could very well have an autoimmune disease called Hashimoto's. You can read about thyroid disease, including Hashimoto's, at Stop the Thyroid Madness.

There is no second of all.

  • Like 3
Posted
Just now, Ellie said:

First of all, you need to see a new doctor. She should have been treated long, long ago. Seriously. She has probably been symptomatic all along; your doctors just didn't know all the symptoms, which brings me back to your getting a new doctor. *I* would not wait a few weeks before doing something. I would be all over this. She could very well have an autoimmune disease called Hashimoto's. You can read about thyroid disease, including Hashimoto's, at Stop the Thyroid Madness.

There is no second of all.

Thanks. We've seen three doctors in regards to this including a pediatric endocrinologist. All said the same thing since she was about 10. So, that's interesting. 

Current doctor is only for past three years and we only brought it up as far as transferring records.

Posted

That's good they're getting her in! Yes, doctors are sort of funny. Mine isn't one to rush to treat and will ask if you're having symptoms, but then he quietly spits out that if he treats he takes the TSH below 2. And I'm like dude, then why were you pushing back when my TSH was 5 or 7??? So I can tell you, just as a person, having your TSH at 2.5 (top of "normal") doesn't feel good. It's not horrible horrible horrible, but it's not good. So if your dd is having symptoms and has the labs to get her treated, definitely do. She might not even realize how good she COULD feel. And for me, my pulmonology issues improved as we got my thyroid up. Just better clearance, health, I don't know. Just saying who knows what could get better.

Can it be on the table to ask for a natural dessicated thyroid med? I use Naturethroid but have used Armour in the past. You can call around to pharmacies and see what they stock so you know what you can get filled easily. It's amazing how much pushback there is on these doctors NOT to prescribe the better meds. Mine keeps telling me that my insurance writes him letters telling him they want me to change my meds from my amazing naturethroid that provides complete treatment and makes me feel GREAT to a T4 only product that would be wicked cheap and rely on whatever poor conversion my liver would make happen. So it's something to advocate on and see what you can make happen. Good luck. :smile:

Posted

What's interesting is that their blood work from years ago showed possible hyperthyroidism but their symptoms now are of hypothyroidism. So, now I'm confused. 

Posted
2 minutes ago, Joker said:

What's interesting is that their blood work from years ago showed possible hyperthyroidism but their symptoms now are of hypothyroidism. So, now I'm confused. 

Swings from hyper to hypo are common with Hashi’s. 

  • Like 1
  • Thanks 1
Posted

I’m almost out of thyroid meds and due to an insurance change have no significant medical history with an available doctor.  I called the urgent care place that gave me my last three month’s supply and orders for a test, and told them that I could not test early in that timeframe due to dental work requiring several rounds of antibiotics, and that now that the virus is all over our county I wanted an extension of meds without having to visit a medical facility for testing or to be seen.  They gave me the refill for 90 more days.  

They CAN make exceptions and you just need to talk them into it.

Posted (edited)
18 minutes ago, Joker said:

What's interesting is that their blood work from years ago showed possible hyperthyroidism but their symptoms now are of hypothyroidism. So, now I'm confused. 

The other thing is time of day. TSH peaks at 3am and goes down, so getting a consistent time of day for testing can help. Won't explain that big a swing, but it's something.

Did they run antibodies on her??? If they aren't running full labs, you can get them done through healthcheckusa.com I've used them many times, easy peasy, just pay, print, done.

Edited by PeterPan
Posted
2 hours ago, Ellie said:

First of all, you need to see a new doctor. She should have been treated long, long ago. Seriously. She has probably been symptomatic all along; your doctors just didn't know all the symptoms, which brings me back to your getting a new doctor. *I* would not wait a few weeks before doing something. I would be all over this. She could very well have an autoimmune disease called Hashimoto's. You can read about thyroid disease, including Hashimoto's, at Stop the Thyroid Madness.

There is no second of all.

 

This happened to my daughter and I didn't know, back when she was 10-11, to push for more testing.  She tested positive for Hashimoto's at age 16.  So much wasted time...

2 hours ago, PeterPan said:

That's good they're getting her in! Yes, doctors are sort of funny. Mine isn't one to rush to treat and will ask if you're having symptoms, but then he quietly spits out that if he treats he takes the TSH below 2. And I'm like dude, then why were you pushing back when my TSH was 5 or 7??? So I can tell you, just as a person, having your TSH at 2.5 (top of "normal") doesn't feel good. It's not horrible horrible horrible, but it's not good. So if your dd is having symptoms and has the labs to get her treated, definitely do. She might not even realize how good she COULD feel. And for me, my pulmonology issues improved as we got my thyroid up. Just better clearance, health, I don't know. Just saying who knows what could get better.

Can it be on the table to ask for a natural dessicated thyroid med? I use Naturethroid but have used Armour in the past. You can call around to pharmacies and see what they stock so you know what you can get filled easily. It's amazing how much pushback there is on these doctors NOT to prescribe the better meds. Mine keeps telling me that my insurance writes him letters telling him they want me to change my meds from my amazing naturethroid that provides complete treatment and makes me feel GREAT to a T4 only product that would be wicked cheap and rely on whatever poor conversion my liver would make happen. So it's something to advocate on and see what you can make happen. Good luck. :smile:

 

My dd tried many thyroid meds, including natural desiccated ones, but is feeling the best on Tirosint with a separate T3 med.  She really had no idea how bad she was until she was properly dosed and able to do more than lay on the couch wrapped up in a blanket with a heating pad, and losing a lot of hair 😞

1 hour ago, PeterPan said:

The other thing is time of day. TSH peaks at 3am and goes down, so getting a consistent time of day for testing can help. Won't explain that big a swing, but it's something.

Did they run antibodies on her??? If they aren't running full labs, you can get them done through healthcheckusa.com I've used them many times, easy peasy, just pay, print, done.

 

Early in the am is best for testing!    And, yes, get ALL the thyroid labs done - insist on it.  If the dr won't order them, get them yourself (and find a new dr)

  • Like 2
Posted
5 hours ago, Joker said:

What's interesting is that their blood work from years ago showed possible hyperthyroidism but their symptoms now are of hypothyroidism. So, now I'm confused. 

The minimum labs are Free T3, Free T4, and Reverse T3. Doctors will order TSH no matter what.

Her Free T3 should be in the upper fourth of your lab's ranges; Free T4 in the upper half; TSH in the lower fourth. There's  a formula for Reverse T3 which I can never remember, lol.

Be sure to read the site I linked above. Also, here's a link to the "long pathetic list of hypothyroid symptoms." They might not be the symptoms you were imagining they would be.

If you do Facebook, join Hashimoto's 411. Lots of good information there.

Posted
10 hours ago, Joker said:

Thanks. We've seen three doctors in regards to this including a pediatric endocrinologist. All said the same thing since she was about 10. So, that's interesting. 

Current doctor is only for past three years and we only brought it up as far as transferring records.

The average number of doctors that people see before finally being treated properly is five.

Endocrinologists don't always know how to treat thyroid issues, as the thyroid is not actually party of the endocrine system. Most commonly, they test TSH, not the Frees, and every doctor/provider has a different definition of when TSH is too high/low and how it should be treated.

Posted

So, we made it through the appointment. Doctors office was fine but the lab was packed.

Hopefully it wasn't all for nothing as we found out quickly this doctor has very little experience with thyroid issues. He was very concerned that she had lost six pounds over the past 8 months though. She didn't need to lose weight and wasn't trying. She also eats and snacks all the dang time so I was surprised by it too.

Hopefully have the lab results by early next week.

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