Aa
Not sure what next - Parathyroidism?
I hope someone can shed some light, or point me in a right direction. For the past eight months, maybe even longer, I've had a lot of 'off' symptoms that have had me really stressed out, and a bit panicky. I am a 45 year old female, in basic decent overall health. Have never really had issues worth noting, except for removal of an ovary in my early 30s due to an ovarian cyst from endometriosis.
About eight to ten months ago I noticed I was starting to lose hair. I have always had long thick hair, so even now after eight months of thinning, I am the only one who notices it, but I don't think it has stopped yet (I dont see extra hair falling, it just seems like it isn't being replaced thru normal shedding like it used to) I also went to my dentist for a check up during that timeframe, and he looked a tad shocked and asked me have I been doing anything different with my diet or dental hygiene, as he said almost everyone of my teeth was developing a small cavity. I told him no, haven't done anything different at all. I went to a dermatologist over my hair issue, and that was absolutely no help. I also told her i had pretty bad scalp pain that started out feeling like my hair had been in a pony tail a long time, then progressed to a spot that stayed very very tender and sore to the touch. She never even looked at my scalp or did a hair pull test. She gave me a steroid drops for my scalp to try. It did nothing. IN the meantime, I was also having although issues that to me felt basically like "my hormones were going crazy". Mood swings, mild depression off and on, achey joints, sudden bloating - gained eight pounds in just a few months, all in the belly area, but my eating habits had not changed. Everyone of these symptoms all put together sounded like menopause and while it would be considered a little early at 45, with only one ovary it was a very distinct possibility.
Went to gyno to have them check all the hormones - estrogen, testerone, DHT, and all the others they usually check I don't recall all names of. Nothing was off, although DHT was on the cusp of menopause, but she didn't really think the whole picture looked like this was my problem. I had a mirena IUD for seven years (i did so great with it that I kept it in an extra two years, gyno said it would be okay). Thinking the IUD no longer secreting the hormone could be my culprit i had it removed and another put in. Terrible periods for a couple of months (to be expected) but nothing really unusual.
In the past month I have felt at my worse, as I have had diarrhea for over a month - taking immodium will help a day or two, then its back. No cramps and it doesnt send me running to bathroom, just when i do go, its very loose or watery. The scalp pain was making me crazy as it would hurt really bad at night (I also read hormonal shifts can cause a painful scalp), and I had this strange small spot show up on my arm that had no explanation. It looked like a small oval shaped burn, but it wasn't a burn - and didn't hurt or itch. After a day or two all the skin on it died off, and this tiny rash showed up in its place - again no itch no burn. ANd it has not budged in over a month of putting steroid creme (prescribed) on it. Just totally at my last straw I went to patient first - almost in tears. The doctor looked at scalp and said it looked very red and irritated and appeared like it was a scalp infection (dermatologist never even looked - she was USELESS). She prescribed doxycycline (antib) for the scalp, gave me a steroid creme for the arm rash, and said to take probiotics for a week or two to see if that helps the diarreah. She also did take a slew of blood tests. All came back normal except elevated calcium of 10.5.
Now we are getting somewhere because my research led me to parathyroid.com, and wow, everything made sense for parathyroidism. All the regular hormones checked out, but if I had this disease, that would explain the hormone that the parathyroid gland was secreting and could cause the hair thinning on top of my head, the fatigue, the aches in my joints, the moodswings, depression. Diarreah wasnt a symptom, but heck that could be from the extreme stress all this health stuff has caused me.
Went back to doc today to get results of the second blood test two weeks later. During this time I did have a molar removed that was VERY infected - it had a crack in it, and had been abcessed for longer than I should have allowed it. So a difference between first calcium test and second would be first one badly infected tooth (that they said could have caused the scalp infection), second test infection all cleared up. Second calcium test came back 9.9. Doc said that and my PTH of 35 was normal. Now Im right back to square one, as I thought for sure this was a parathyroid issue.
My apologies for such a long post, however, i felt it made sense to give out anything relevant. Now my question is, what would you do in this situation? Do I go with the docs hunch that I was either hydrated (I do tend to get dehydrated off and on not drinking enough water) or the tooth infection elevating my calcium, or is the 9.9 calcium, 1.21 ionic calcium, and 35 PTH levels. Should I perhaps go to an endocrinologist to have this further investigated? Or is it probably okay with those levels?
About eight to ten months ago I noticed I was starting to lose hair. I have always had long thick hair, so even now after eight months of thinning, I am the only one who notices it, but I don't think it has stopped yet (I dont see extra hair falling, it just seems like it isn't being replaced thru normal shedding like it used to) I also went to my dentist for a check up during that timeframe, and he looked a tad shocked and asked me have I been doing anything different with my diet or dental hygiene, as he said almost everyone of my teeth was developing a small cavity. I told him no, haven't done anything different at all. I went to a dermatologist over my hair issue, and that was absolutely no help. I also told her i had pretty bad scalp pain that started out feeling like my hair had been in a pony tail a long time, then progressed to a spot that stayed very very tender and sore to the touch. She never even looked at my scalp or did a hair pull test. She gave me a steroid drops for my scalp to try. It did nothing. IN the meantime, I was also having although issues that to me felt basically like "my hormones were going crazy". Mood swings, mild depression off and on, achey joints, sudden bloating - gained eight pounds in just a few months, all in the belly area, but my eating habits had not changed. Everyone of these symptoms all put together sounded like menopause and while it would be considered a little early at 45, with only one ovary it was a very distinct possibility.
Went to gyno to have them check all the hormones - estrogen, testerone, DHT, and all the others they usually check I don't recall all names of. Nothing was off, although DHT was on the cusp of menopause, but she didn't really think the whole picture looked like this was my problem. I had a mirena IUD for seven years (i did so great with it that I kept it in an extra two years, gyno said it would be okay). Thinking the IUD no longer secreting the hormone could be my culprit i had it removed and another put in. Terrible periods for a couple of months (to be expected) but nothing really unusual.
In the past month I have felt at my worse, as I have had diarrhea for over a month - taking immodium will help a day or two, then its back. No cramps and it doesnt send me running to bathroom, just when i do go, its very loose or watery. The scalp pain was making me crazy as it would hurt really bad at night (I also read hormonal shifts can cause a painful scalp), and I had this strange small spot show up on my arm that had no explanation. It looked like a small oval shaped burn, but it wasn't a burn - and didn't hurt or itch. After a day or two all the skin on it died off, and this tiny rash showed up in its place - again no itch no burn. ANd it has not budged in over a month of putting steroid creme (prescribed) on it. Just totally at my last straw I went to patient first - almost in tears. The doctor looked at scalp and said it looked very red and irritated and appeared like it was a scalp infection (dermatologist never even looked - she was USELESS). She prescribed doxycycline (antib) for the scalp, gave me a steroid creme for the arm rash, and said to take probiotics for a week or two to see if that helps the diarreah. She also did take a slew of blood tests. All came back normal except elevated calcium of 10.5.
Now we are getting somewhere because my research led me to parathyroid.com, and wow, everything made sense for parathyroidism. All the regular hormones checked out, but if I had this disease, that would explain the hormone that the parathyroid gland was secreting and could cause the hair thinning on top of my head, the fatigue, the aches in my joints, the moodswings, depression. Diarreah wasnt a symptom, but heck that could be from the extreme stress all this health stuff has caused me.
Went back to doc today to get results of the second blood test two weeks later. During this time I did have a molar removed that was VERY infected - it had a crack in it, and had been abcessed for longer than I should have allowed it. So a difference between first calcium test and second would be first one badly infected tooth (that they said could have caused the scalp infection), second test infection all cleared up. Second calcium test came back 9.9. Doc said that and my PTH of 35 was normal. Now Im right back to square one, as I thought for sure this was a parathyroid issue.
My apologies for such a long post, however, i felt it made sense to give out anything relevant. Now my question is, what would you do in this situation? Do I go with the docs hunch that I was either hydrated (I do tend to get dehydrated off and on not drinking enough water) or the tooth infection elevating my calcium, or is the 9.9 calcium, 1.21 ionic calcium, and 35 PTH levels. Should I perhaps go to an endocrinologist to have this further investigated? Or is it probably okay with those levels?
MandaP hasn't posted on the Forum since last July, so I doubt you will get an answer here. You might try clicking on her name and sending a message. That sometimes will show up in her email as having a message on MedHelp.
If you want the name I gave her, I'll be glad to forward to you.
If you want the name I gave her, I'll be glad to forward to you.
To all who might read this, any recommendations for a good Endocrinologist in my area (Central Virginia) is very appreciated. I have no clue who to utilize other than looking in the yellow pages at this point.
I live in Virginia, near Richmond.
And I hear you about the ranges and what doctors will pass off as "normal". I ran into the same frustration with my GP and my calcium levels. She tried to tell me that normal is 10.2 and mine is only three points higher, not anything to be alarmed about. I told her that no, 10.5 for a 45 year old is NEVER normal and it is something to be concerned about and told her about the information I got from Dr. Norman's site, parathyroid.com. She looked at me with glazed eyes. The thing is, they ONLY say 10.2 is the high range of normal because they INCLUDE a child's normal range in that average. It might be normal for a kid of ten, but would be abnormal and concerning for someone my age. I tried to explain this, but she clearly wasn't interested.
As I sit here and type I have swollen legs that are very tight, terrible GERD, and thinning hair. They can't tell me there is nothing going on.
I am so frustrated with doctors at the moment. I know this isn't their area of specialty but the amount of cluelessness is alarming and no wonder so many people walk around not feeling well and dismissed by their doctor.
I thank you for your posts gimel. Sometimes it is cathartic just to get these things off one's chest. Hopefully my test results will be in the mailbox tomorrow.
And I hear you about the ranges and what doctors will pass off as "normal". I ran into the same frustration with my GP and my calcium levels. She tried to tell me that normal is 10.2 and mine is only three points higher, not anything to be alarmed about. I told her that no, 10.5 for a 45 year old is NEVER normal and it is something to be concerned about and told her about the information I got from Dr. Norman's site, parathyroid.com. She looked at me with glazed eyes. The thing is, they ONLY say 10.2 is the high range of normal because they INCLUDE a child's normal range in that average. It might be normal for a kid of ten, but would be abnormal and concerning for someone my age. I tried to explain this, but she clearly wasn't interested.
As I sit here and type I have swollen legs that are very tight, terrible GERD, and thinning hair. They can't tell me there is nothing going on.
I am so frustrated with doctors at the moment. I know this isn't their area of specialty but the amount of cluelessness is alarming and no wonder so many people walk around not feeling well and dismissed by their doctor.
I thank you for your posts gimel. Sometimes it is cathartic just to get these things off one's chest. Hopefully my test results will be in the mailbox tomorrow.
First, if it is a thyroid problem and you get the tests recommended, don't be surprised if the actual thyroid hormone results are in the low endd of the range. Many times doctors will pronounce this as "normal" and say that it is not thyroid related. Frequently that is not the case, because the reference ranges were incorrectly established, based on the entire population of patients' test data, and then an assumption was made about the percentage of patients that were hypothyroid. Over 10 years ago the AACE finally attempted to correct for this by changing the range for TSH.. Unfortunately after all this time most labs and doctors have yet to adopt the change, plus TSH is totally inadequate as the sole diagnostic for thyroid.
The ranges for Free T3 and Free T4 were established in basically the same way as TSH. Again unfortunately, these ranges have not been adjusted like for TSH. If they were, the ranges should look more like the upper half of the current ranges. That is why so many of our members only get symptom relief when their Free T3 is adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.
These points would not be of concern if the ranges were used as guidelines within which to adjust Free T3 and free T4 as necessary to relieve symptoms. That is what a good thyroid doctor will do. Unfortunately the ranges are used as pass/fail, with the resultant huge number of hypo patients that are inadequately treated.
Successful treatment of hypothyroidism should not be as difficult as it seems to be. The most difficult part is finding that good thyroid doctor that will treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.
If you will tell us where you live, perhaps a member can recommend a good thyroid doctor in your area, based on personal experience, that can get you headed in the right direction if it is hypothyroidism causing your symptoms. Also, in the interim, if you can get those test done and post results and reference ranges, members may be able to better respond.
The ranges for Free T3 and Free T4 were established in basically the same way as TSH. Again unfortunately, these ranges have not been adjusted like for TSH. If they were, the ranges should look more like the upper half of the current ranges. That is why so many of our members only get symptom relief when their Free T3 is adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.
These points would not be of concern if the ranges were used as guidelines within which to adjust Free T3 and free T4 as necessary to relieve symptoms. That is what a good thyroid doctor will do. Unfortunately the ranges are used as pass/fail, with the resultant huge number of hypo patients that are inadequately treated.
Successful treatment of hypothyroidism should not be as difficult as it seems to be. The most difficult part is finding that good thyroid doctor that will treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.
If you will tell us where you live, perhaps a member can recommend a good thyroid doctor in your area, based on personal experience, that can get you headed in the right direction if it is hypothyroidism causing your symptoms. Also, in the interim, if you can get those test done and post results and reference ranges, members may be able to better respond.
Hi gimel, definitely appreciate your replies! You gave a link to 'hypothyroid" symptoms. Now forgive me for asking what might be a really dumb question, but I could potentially suffer from this even if the thyroid tests are supposedly 'normal'? (i should have the exact numbers in a day or two as they are mailing them to me, and I will share them here). I will definitely make sure to be armed with good information for my next doc visit, i just wasn't sure if I should indeed go to a endocinologist since everything came back "normal' range with all my tests.
And I am big on getting a lot of diagnostic tests, so anything that would be helpful I will try, because I am tired of not feeling like myself.
I read this in one of the links on hypothyroidism and this sounds like I could be describing myself to a tee (weight gain has been minimal, but for a person who was the same weight from the age of 20 to the age of 45, gaining 8 pounds in 8 months is IMO extreme):
///weight gain, moodiness, fatigue, hair loss, fertility or menstrual problems, muscle aches/pains -- are all too often attributed to stress, depression, age, lifestyle, “female problems,” or simply dismissed as “all in the patient’s head.”///
I just feel like my hormones are in terrible disarray as I get swelling from water retention a lot since this all started, stomach burns like period cramps used to feel when I was a teenager and just started having them, the hair loss, suddenly getting a couple of hairs on my chin...thing is all of this is also something that is a part of aging, but it all hit me so sudden and i am not in menopause. And the last few days the acid reflux pain has been almost unbearable.
I really thought the high calcium was a signal of parathyroid disease and i think that would have been easier if it was, as the operation seems simple enough to fix it and get back to 'normal'. I am just so frustrated not knowing.
And I am big on getting a lot of diagnostic tests, so anything that would be helpful I will try, because I am tired of not feeling like myself.
I read this in one of the links on hypothyroidism and this sounds like I could be describing myself to a tee (weight gain has been minimal, but for a person who was the same weight from the age of 20 to the age of 45, gaining 8 pounds in 8 months is IMO extreme):
///weight gain, moodiness, fatigue, hair loss, fertility or menstrual problems, muscle aches/pains -- are all too often attributed to stress, depression, age, lifestyle, “female problems,” or simply dismissed as “all in the patient’s head.”///
I just feel like my hormones are in terrible disarray as I get swelling from water retention a lot since this all started, stomach burns like period cramps used to feel when I was a teenager and just started having them, the hair loss, suddenly getting a couple of hairs on my chin...thing is all of this is also something that is a part of aging, but it all hit me so sudden and i am not in menopause. And the last few days the acid reflux pain has been almost unbearable.
I really thought the high calcium was a signal of parathyroid disease and i think that would have been easier if it was, as the operation seems simple enough to fix it and get back to 'normal'. I am just so frustrated not knowing.
Again, I am not trying to convince you one way or the other. The whole purpose of an investigation is to discover the facts. If you look at this link about hypothyroid symptoms, you'll see those you mention, and acid reflux should have been included as well. I know that from personal experience.
http://thyroid.about.com/cs/basics_starthere/a/hypochecklist.htm
So I just want to make sure you get all the suggested tests done when you next see a doctor.
http://thyroid.about.com/cs/basics_starthere/a/hypochecklist.htm
So I just want to make sure you get all the suggested tests done when you next see a doctor.
I did ask my doc to mail me the rest of my test results.
I wonder if I should go ahead and make an appt with Endo doc anyway. True, my latest calcium read and PTH is normal, however, it was at 10.5 just two weeks ago so maybe it fluctuates. I feel very strongly these symptoms I am experiencing are classic parathyroid disesase issues. Parathyroid.com that is the best source for information lists six of my symptoms verbatim: females hair thinning on top of head, depression, GERD/acid reflux, fatigue, 'general overall not feeling very well", aches in bones and joints.
My hair falling out is emotionally taxing in addition to all of the physical symptoms.
I wonder if I should go ahead and make an appt with Endo doc anyway. True, my latest calcium read and PTH is normal, however, it was at 10.5 just two weeks ago so maybe it fluctuates. I feel very strongly these symptoms I am experiencing are classic parathyroid disesase issues. Parathyroid.com that is the best source for information lists six of my symptoms verbatim: females hair thinning on top of head, depression, GERD/acid reflux, fatigue, 'general overall not feeling very well", aches in bones and joints.
My hair falling out is emotionally taxing in addition to all of the physical symptoms.
Thanks again. Very appreciated. I will request copies of the reports to be sent. I did get my hormone check results sent to me, but not the latest ones with the vitamin levels, thyroid, etc.
I have also had significant GERD lately which apparently is another symptom of parathyroid. All of my other vitamin levels checked out fine. I was real adamant that they check as much as possible (to include liver enzymes and kidney function, also all were fine). The supplements I take daily (as I am a very light eater) is Vit C, Fish Oil, multi vit, B complex, and occasionally zinc if I drink beer as I read beer can zap body of zinc. I also usually take Lecithin for brain function as I have a job that requires a lot of detail orientation and concentration, but lately my mind seems foggy some days (not badly, just sometimes hard to concentrate).
Understand that I am not saying that your problems all lie within the boundaries of those tests. I just think you should know what the results are and where they fall within their range. Just because the doctor says they fall within the so-called "normal" range does not mean that they are adequate for you.
It is important, so I suggest that you get a copy of the lab report. The doctor is required to give you a copy upon your request. It is a good idea to always get a copy and write on there how you were feeling and what meds/supplements you were taking. These then become very valuable for future reference.
The only option to delete double posts is to go to the upper right corner and click on Report. Then you can identify it as a duplicate post and it will be removed.
It is important, so I suggest that you get a copy of the lab report. The doctor is required to give you a copy upon your request. It is a good idea to always get a copy and write on there how you were feeling and what meds/supplements you were taking. These then become very valuable for future reference.
The only option to delete double posts is to go to the upper right corner and click on Report. Then you can identify it as a duplicate post and it will be removed.
Gimel,
I had a LOT of tests done. They tested all thyroid functions if that is what you mean by Free T3, and T4, and Vitamin A, D and B12 all came back fine. I just didn't write down those results, but she said everything was in normal range. If it might be significant to know them even with them being normal, I can always ask the doctors to mail me a copy of all of my results. Thanks for your post.
And to all, sorry about double posts above. Is there an option to edit posts? Couldn't find one if there is.
I had a LOT of tests done. They tested all thyroid functions if that is what you mean by Free T3, and T4, and Vitamin A, D and B12 all came back fine. I just didn't write down those results, but she said everything was in normal range. If it might be significant to know them even with them being normal, I can always ask the doctors to mail me a copy of all of my results. Thanks for your post.
And to all, sorry about double posts above. Is there an option to edit posts? Couldn't find one if there is.
I don't see an edit post option, but near the end I meant to just give my current levels - 9.9 calcium, 1.21 ionic calcium, and 35 PTH. All of which I was told are in normal range. I also meant to add in my symptoms that added up to parathyroid disease that the sudden tooth decay in the past year was another big clue as that sounds like my body taking calcium from teeth (and probabaly my bones too, its just not visible like teeth) from the calcium issue. It just seems far too big of a coincendence to me that my teeth are getting cavities and hair falling out at same time to not be due to something major.
I don't see an edit post option, but near the end I meant to just give my current levels - 9.9 calcium, 1.21 ionic calcium, and 35 PTH. All of which I was told are in normal range. I also meant to add in my symptoms that added up to parathyroid disease that the sudden tooth decay in the past year was another big clue as that sounds like my body taking calcium from teeth (and probabaly my bones too, its just not visible like teeth) from the calcium issue. It just seems far too big of a coincendence to me that my teeth are getting cavities and hair falling out at same time to not be due to something major.
The first symptom you mention can be related to a number of different possibilities; however, if it were me, as a start I'd request to be tested for the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and T4). Also test for Vitamin A, D, B12, and ferritin. Be aware that the ranges for these are typically too broad, so typically you should not be in the low end fo the range. If you will get those tests done and post results and reference ranges shown on the lab report, members will be glad to help interpret and advise further.
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