Doctor's appointment next week. What should I ask?

[Greta]

I have an appointment with a new doctor next week (a doctor of internal medicine).  I would appreciate any advice about what questions to ask, what tests to run, etc.  I’ll try to summarize as briefly as I can (brevity is not a strong point of mine).  I am 43 years old, btw.

 

Diagnosed conditions (and their treatments):

 

Chronic migraine (amitriptyline) - I’ve had migraines almost my entire life, but they only became chronic around the time I turned 40.  I went from having them once or twice a month to having them daily.  Amitriptyline keeps it down to anywhere from two to five per week.

 

Perimenopause (HRT) - This also started at age 40. 

 

Vitamin D deficiency (80,000 IU Vit D per week) - I was diagnosed less than a year ago, but knowing what I know now and looking back, I’m sure I had this problem for at least 12 and maybe 15 years.  

 

 

Undiagnosed concerns that I want to address:

 

Hair loss

 

Itchy skin (but no visible signs of inflammation like redness or bumps or anything) that hasn’t improved by switching to gentle, fragrance-free products.

 

These two symptoms appeared about a year ago, but weren’t too bad at first.  In the last few months they’ve gotten worse, to the point where my husband and daughter are freaking out by how much hair I’m losing, and I’m going crazy with the constant itching.

 

Another possible third symptom, though this one I’m less sure about.  A friend of mine who happens to be a doctor (but not my doctor - he’s retired) and an optometrist both said that my eyes looked a bit “buggy†or “bulging†and asked me if I’d had my thyroid checked.  I went to my family doctor with this concern, he did an examination of my eyes and said they were perfectly fine, and he said my thyroid numbers are perfectly normal (details on that below).

 

Issues in my family history:  osteoporosis, hypothyroidism, lymphoma, diabetes, IBS (I’ve never been diagnosed with this myself, but I do have some digestive issues, which are exacerbated by gluten and dairy) and hemochromatosis. 

 

 

Here are the tests I have had done recently:

 

CBC:  all normal

Metabolic Panel:  all normal

Lipid Panel:  all normal

Hgb A1C:  5.3%

Free T3:  2.9 pg/mL

Free T4:  1.2 ng/dL

Total T3:  116 ng/dL

TSH: 0.7 uIU/mL

Serum Folate:  13.8 ng/mL

Vitamin B12:  277 pg/mL

Vitamin D:  19 at first test, 44 at second

 

 

 

I asked my family doctor about a thyroid antibodies test but he said it wasn’t necessary.  I’m planning to ask this new doctor as well.  

 

Anything else that I should discuss with her?

[kbutton]

I have not successfully managed to get a doctor to run more thorough thyroid testing on me, so I plan to order my own labs at some point. (HealthCheckUSA, as a friend suggested) 

 

Thyroid issues show up slowly and late in my family, but I am convinced that they wreak havoc anyway. It's just not in a way that a doctor wants to acknowledge or can see easily. My grandmother's went unnoticed until recently in spite of family history. She just had surgery at age 85, and she had an astonishing tangle of nodules in and around lots of structures--it was such a tangled mess they couldn't biopsy prior to surgery without a risk of puncturing major arteries and such. Just the structure of the nodules and her thyroid has probably caused real issues with other bodily functions, whether or not the thyroid hormones were messed up. No doctor could palpate her thyroid and feel anything enlarged or amiss, but a new doctor (took over a previous practice) finally listened when she said she could feel it. Things were definitely enlarged and amiss.

[Soror]

cheese-its your b12 is really low!!!!

d3 is still too low. 

 

 

Free T3 and T4 are both on the lower than optimal, your T3 especially so. 

[Greta]

I have not successfully managed to get a doctor to run more thorough thyroid testing on me, so I plan to order my own labs at some point. (HealthCheckUSA, as a friend suggested) 

 

Thyroid issues show up slowly and late in my family, but I am convinced that they wreak havoc anyway. It's just not in a way that a doctor wants to acknowledge or can see easily. My grandmother's went unnoticed until recently in spite of family history. She just had surgery at age 85, and she had an astonishing tangle of nodules in and around lots of structures--it was such a tangled mess they couldn't biopsy prior to surgery without a risk of puncturing major arteries and such. Just the structure of the nodules and her thyroid has probably caused real issues with other bodily functions, whether or not the thyroid hormones were messed up. No doctor could palpate her thyroid and feel anything enlarged or amiss, but a new doctor (took over a previous practice) finally listened when she said she could feel it. Things were definitely enlarged and amiss.

 

Wow, that's pretty wild.  I'm glad she finally got the help she needed!  My daughter was diagnosed with an anxiety disorder this spring, and before that diagnosis of course they wanted to check for underlying physical causes of her symptoms.  The NP that she saw ran a thyroid panel, but ALSO a thyroid antibodies test because she said that sometimes your numbers can still be normal even though there's a problem.  My doc, on the other hand, said that TSH is the ultimate thyroid test and tells you everything you need to know.   :glare:

 

Thanks for mentioning HealthCheckUSA!  I just checked their website and they do have a location here in my city.  

 

cheese-its your b12 is really low!!!!

d3 is still too low. 

 

 

Free T3 and T4 are both on the lower than optimal, your T3 especially so. 

 

 

 

B12 - yeah, I wondered about that!  It was within the lab's reference range, so my doctor wasn't concerned.  But it was so near the bottom end of that range that I thought it couldn't hurt to supplement.  I bought some B12 tablets, but then I read that your ability to digest them tends to decrease with age.  So I just ordered a sublingual form yesterday.

 

Vit D - I got hit by a vicious muscle cramp yesterday, which is still hurting today.  They used to plague me terribly before the diagnosis, and then went away when I started supplementing.  So my fear is that it has now dropped even lower than at that last test (which was about three months ago, I think).  I read that magnesium and Vit K are necessary for proper absorption, so I'm going to up my dose on those too.

[Ellie]

I have an appointment with a new doctor next week (a doctor of internal medicine).  I would appreciate any advice about what questions to ask, what tests to run, etc.  I’ll try to summarize as briefly as I can (brevity is not a strong point of mine).  I am 43 years old, btw.

 

Diagnosed conditions (and their treatments):

 

Chronic migraine (amitriptyline) - I’ve had migraines almost my entire life, but they only became chronic around the time I turned 40.  I went from having them once or twice a month to having them daily.  Amitriptyline keeps it down to anywhere from two to five per week.

 

Perimenopause (HRT) - This also started at age 40. 

 

Vitamin D deficiency (80,000 IU Vit D per week) - I was diagnosed less than a year ago, but knowing what I know now and looking back, I’m sure I had this problem for at least 12 and maybe 15 years.  

 

 

Undiagnosed concerns that I want to address:

 

Hair loss

 

Itchy skin (but no visible signs of inflammation like redness or bumps or anything) that hasn’t improved by switching to gentle, fragrance-free products.

 

These two symptoms appeared about a year ago, but weren’t too bad at first.  In the last few months they’ve gotten worse, to the point where my husband and daughter are freaking out by how much hair I’m losing, and I’m going crazy with the constant itching.

 

Another possible third symptom, though this one I’m less sure about.  A friend of mine who happens to be a doctor (but not my doctor - he’s retired) and an optometrist both said that my eyes looked a bit “buggy†or “bulging†and asked me if I’d had my thyroid checked.  I went to my family doctor with this concern, he did an examination of my eyes and said they were perfectly fine, and he said my thyroid numbers are perfectly normal (details on that below).

 

Issues in my family history:  osteoporosis, hypothyroidism, lymphoma, diabetes, IBS (I’ve never been diagnosed with this myself, but I do have some digestive issues, which are exacerbated by gluten and dairy) and hemochromatosis. 

 

 

Here are the tests I have had done recently:

 

CBC:  all normal

Metabolic Panel:  all normal

Lipid Panel:  all normal

Hgb A1C:  5.3%

Free T3:  2.9 pg/mL

Free T4:  1.2 ng/dL

Total T3:  116 ng/dL

TSH: 0.7 uIU/mL

Serum Folate:  13.8 ng/mL

Vitamin B12:  277 pg/mL

Vitamin D:  19 at first test, 44 at second

 

 

 

I asked my family doctor about a thyroid antibodies test but he said it wasn’t necessary.  I’m planning to ask this new doctor as well.  

 

Anything else that I should discuss with her?

 

I'm also concerned about your Frees (Total T3 is a useless number). I can't tell for sure without your lab's ranges, but they don't look optimal to me. You want optimal, not normal. And your family doctor was wrong, because you absolutely want the thyroid antibodies test.

 

If you do Facebook, look for a page called "Hashimoto's 411." You'll be able to find a chart there with the recommended lab work.

 

[Greta]

I'm also concerned about your Frees (Total T3 is a useless number). I can't tell for sure without your lab's ranges, but they don't look optimal to me. You want optimal, not normal. And your family doctor was wrong, because you absolutely want the thyroid antibodies test.

 

If you do Facebook, look for a page called "Hashimoto's 411." You'll be able to find a chart there with the recommended lab work.

 

 

 

Thank you, Ellie!  I will check out Hashimoto's 411.

 

Sorry, I didn't think to post the lab ranges.

 

T3:  1.7 - 5.2 (mine was 2.9)

 

T4:  0.7 - 1.6 (mine was 1.2)

[nixpix5]

I just wanted to throw this in since I have struggled with migraines since I was 14 years old. I found out last year that what I thought were migraines were actually cluster headaches also known as suicide headaches. They are considered one of the most hard to treat and painful disorders. Make sure you rule that out by looking at the symptoms.

 

They tend to be shorter in duration but come on more often and the pain is intense, always hitting in the same spot each time unilaterally. Do you have them all year long or part of the year?

 

For itching, have you noticed any jaundice? Liver enzymes and bile duct/gall bladder should be considered. Check your bile levels as this can cause poor nutrient absorption and hair loss.

 

Thyroid tests can be negative/within limits and still be faulty. You may want to consider going to a good naturapath who will take their time looking at all components.

[mom2samlibby]

OMG!!  Your B12, folate, and D are extremely low!!  They need to add K2 to your Vitamin D3, without you won't absorb the D3 and it can harden your arteries.   Optimal levels of D are between 50 - 90.  Magnesium can also help with the absorption of D3. 

 

I'd want your iron level checked.   B12 needs to be higher than 500.  Folate should be around 20 and iron around 80.  There are some other tests that need to be done with B12.  Check out the website, Could It Be B12?  They are listed on there.  

 

I used to get monthly migraines, but since I started taking B12, folate, iron, and magnesium they've disappeared.  I haven't had one in over a year.  

 

You might also want to get checked for MTHFR.  

[Greta]

I just wanted to throw this in since I have struggled with migraines since I was 14 years old. I found out last year that what I thought were migraines were actually cluster headaches also known as suicide headaches. They are considered one of the most hard to treat and painful disorders. Make sure you rule that out by looking at the symptoms.

 

They tend to be shorter in duration but come on more often and the pain is intense, always hitting in the same spot each time unilaterally. Do you have them all year long or part of the year?

 

For itching, have you noticed any jaundice? Liver enzymes and bile duct/gall bladder should be considered. Check your bile levels as this can cause poor nutrient absorption and hair loss.

 

Thyroid tests can be negative/within limits and still be faulty. You may want to consider going to a good naturapath who will take their time looking at all components.

Thank you! I read a comparison and mine do sound more like migraines. I'm not aware of any signs of jaundice, but I will put that on my list of questions! Thanks again!

[Greta]

OMG!! Your B12, folate, and D are extremely low!! They need to add K2 to your Vitamin D3, without you won't absorb the D3 and it can harden your arteries. Optimal levels of D are between 50 - 90. Magnesium can also help with the absorption of D3.

 

I'd want your iron level checked. B12 needs to be higher than 500. Folate should be around 20 and iron around 80. There are some other tests that need to be done with B12. Check out the website, Could It Be B12? They are listed on there.

 

I used to get monthly migraines, but since I started taking B12, folate, iron, and magnesium they've disappeared. I haven't had one in over a year.

 

You might also want to get checked for MTHFR.

Yeah, what's up with my body that it's not absorbing all of these nutrients?? I will ask about checking iron and MTHFR.

 

In what form do you take your folate? I don't know much about it, but what was tested in my blood was folate while what I see on supplement labels is folic acid. And the MTHFR gene has something to do with converting folic acid to folate?

 

I'm so happy to hear that you successfully treated your migraines with supplements! It's so nice to have some hope!

[mom2samlibby]

Yeah, what's up with my body that it's not absorbing all of these nutrients?? I will ask about checking iron and MTHFR.

 

In what form do you take your folate? I don't know much about it, but what was tested in my blood was folate while what I see on supplement labels is folic acid. And the MTHFR gene has something to do with converting folic acid to folate?

 

I'm so happy to hear that you successfully treated your migraines with supplements! It's so nice to have some hope!

 

My folate is methyl-folate.  I take the Thorne brand.  Seeking Health is another one that offers folate.  Yes, the MTHFR gene can cause problems with converting folic acid to a usable form for some people.  If that is the problem, the folic acid is more like a poison to your body and you'll need to find the natural form of folate to take instead.   There is a website from a Dr. Ben Lynch that has a lot of good info on it.  

 

Hopefully, you'll get to the bottom of this soon and start on the road to recovery.  

[Greta]

My folate is methyl-folate. I take the Thorne brand. Seeking Health is another one that offers folate. Yes, the MTHFR gene can cause problems with converting folic acid to a usable form for some people. If that is the problem, the folic acid is more like a poison to your body and you'll need to find the natural form of folate to take instead. There is a website from a Dr. Ben Lynch that has a lot of good info on it.

 

Hopefully, you'll get to the bottom of this soon and start on the road to recovery.

Thank you so much! I bought the "Could it be B12?" book because my Dad was recently diagnosed with B12 deficiency. He wasn't offered injections, just told to take a supplement! He's seeing a neurologist tomorrow because his family doctor is concerned about Parkinson's, but now I'm wondering if it's the B12 behind his symptoms. And if problems absorbing it are genetic..... Thank you for pointing me in this direction. I just sent my dad a really long email about this!

[mom2samlibby]

Thank you so much! I bought the "Could it be B12?" book because my Dad was recently diagnosed with B12 deficiency. He wasn't offered injections, just told to take a supplement! He's seeing a neurologist tomorrow because his family doctor is concerned about Parkinson's, but now I'm wondering if it's the B12 behind his symptoms. And if problems absorbing it are genetic..... Thank you for pointing me in this direction. I just sent my dad a really long email about this!

 

That's the path they sent my dad on.  :(  2 years ago they diagnosed him with B12 deficiency.  They never tested folate or iron levels though.  They gave him B12 injections, but not enough of them to do any good.  Then they told him it was high enough and he didn't need them anymore.  His symptoms got worse.  He started having problems walking.  Last year, he was diagnosed with Parkinson's.  It's so scary how little these doctors now.  I went with him to one of his appointments a couple of weeks ago & I asked about his B12 level and his D level.  I asked why they didn't have him on K2 with the D3 and she didn't even know what K2 was.  Then she stammered around and finally said that it can cause blood clots.  When I asked about his iron and folate level, she said that they hadn't tested him for that because he wasn't anemic???  How could she tell???  I had more questions, but I gave up that point.  

 

The 23andme genetics test might also be something for you to look into.  You'll need to run your results through another site to get the medical results, but I've heard great things about it.  

[Scarlett]

Other people have much more knowledge than me, but I will tell you when my Vit D was 19 I felt like death.  I could not function.  

 

Also, I had a few years of horrible headaches....probably mirgraines.  Then one day they just disappeared.  I strongly suspect they were tied to hormones in some way because I went through the change around the same time.  The doctor told me the estrogen doesn't usually just stop....it bounces all around up and down for a few years and causes a lot of symptoms.  

 

So have you had your hormones tested?  I don't know the names to know if they are in your list or not.

[Greta]

That's the path they sent my dad on. :( 2 years ago they diagnosed him with B12 deficiency. They never tested folate or iron levels though. They gave him B12 injections, but not enough of them to do any good. Then they told him it was high enough and he didn't need them anymore. His symptoms got worse. He started having problems walking. Last year, he was diagnosed with Parkinson's. It's so scary how little these doctors now. I went with him to one of his appointments a couple of weeks ago & I asked about his B12 level and his D level. I asked why they didn't have him on K2 with the D3 and she didn't even know what K2 was. Then she stammered around and finally said that it can cause blood clots. When I asked about his iron and folate level, she said that they hadn't tested him for that because he wasn't anemic??? How could she tell??? I had more questions, but I gave up that point.

 

The 23andme genetics test might also be something for you to look into. You'll need to run your results through another site to get the medical results, but I've heard great things about it.

Oh, no, I'm so sorry to hear that your dad has had such a hard time getting proper treatment! This is such an easy treatment for very serious problems, you'd think doctors would be thrilled to provide it! It is so frustrating how hard people have to fight to get medical care. :crying:

 

23andMe is a great idea. Thank you!

[Greta]

Other people have much more knowledge than me, but I will tell you when my Vit D was 19 I felt like death. I could not function.

 

Also, I had a few years of horrible headaches....probably mirgraines. Then one day they just disappeared. I strongly suspect they were tied to hormones in some way because I went through the change around the same time. The doctor told me the estrogen doesn't usually just stop....it bounces all around up and down for a few years and causes a lot of symptoms.

 

So have you had your hormones tested? I don't know the names to know if they are in your list or not.

Thank you, Scarlett! I'm hoping if I can get my D levels up and keep them up for awhile maybe some of these problems will go away.

 

You're right - my migraines are most definitely hormone-related. They started at puberty, stopped temporarily during pregnancy, and got horrible with peri menopause. I am seeing on OBGYN who is giving me HRT. Unfortunately it doesn't seem to have much of an effect on the migraines though it has helped the other symptoms considerably.

[HollyDay]

hormone panel....progesterone, estrogens, testosterone. 

cortisol levels

ferritine levels

c reative protein

homocysteine (maybe??)  I had this run and mine is high

 

I was recently told that when ferritine levels get too low, the thyroid can't function properly, even if all the thyroid numbers are "good"

 

ANA (maybe??)

 

[HollyDay]

sorry, not sure why the double post.....

Edited August 9, 2017 by HollyDay

[Scarlett]

Thank you, Scarlett! I'm hoping if I can get my D levels up and keep them up for awhile maybe some of these problems will go away.

 

You're right - my migraines are most definitely hormone-related. They started at puberty, stopped temporarily during pregnancy, and got horrible with peri menopause. I am seeing on OBGYN who is giving me HRT. Unfortunately it doesn't seem to have much of an effect on the migraines though it has helped the other symptoms considerably.

 

 

That is the same path my headaches took. I had them as a teen....my cycles were never normal...then I got on the pill at 18 and stayed on it until I was 32 or so....then I had pregnancy and nursing....so the headaches didnt' come back until late 30s.  Early 40s.  

[Greta]

hormone panel....progesterone, estrogens, testosterone.

cortisol levels

ferritine levels

c reative protein

homocysteine (maybe??) I had this run and mine is high

 

I was recently told that when ferritine levels get too low, the thyroid can't function properly, even if all the thyroid numbers are "good"

 

ANA (maybe??)

Thank you!