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Old 08-23-2008, 07:02 AM   #1
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High hyperparathyroid due to vit. D deficiency?

I hope somewhere here can offer me some advice or has gone through my same situation.

It all started about 3-4 yrs ago. I was 45 at the time and my health started getting weird. aches and pains that came out of no where and if I did do something, I paid for it dearly the next two days.
my muscles, my bones, my joints, in my entire body hurt. My memory started going, I couldn't finish sentences, I started having chronic constipation which I never had before on a daily basis, my hair started coming out and got really thin and I spine and lower back hurt to the point I couldnt' even turn over at night without screaming. I was miserable, not to mention depressed and full of anxiety. I even go to a psychiatrist and a therapist weekly.
MY family dr. was probably getting sick of seeing my name on his name of patients list coming in for that day. He started referring me to specialtists because he didn't have any answers for me.
until Bingo!
last decemeber he finally guided me to the right dr.
A rheumytologist. He dx'd me with having fibromyalgia.

My family dr. found out before I went to the rheumy dr. that I have full blown osteoporosis, not just the beginning of it, then he ordered an xray of my spine and found out I have osteoarthritis of my spine and hip (degenerative joint disorder) and now I found out through the rheumy in decembember that I had a very low level of vitamin D, which when I started taking high doses of prescribed D, alot of my aches and pains started diminishing.
My level went back up but a year later, which is now, has gone back down again.

My new rheumy dr that I now have, due to changed insurance, has ordered a PTH blood test, (parathyroid) which I never even knew existed till she ordered it. the reason being, I asked her what can be causing all my bone loss problems? and what can be causing the vit. D level to keep going back down all the time?

she forgot to order the calcium level so I just found out yesterday it's normal.
it was 9. something

My dr. said the PTH level might be slightly elevated, which is over the normal range, but not high level. It was at 52. flagged as High from the lab it was tested at.

my dr. wasn't overly concerned and says it may be elevated due to the low vitamin D level.

My case sounds exactly like hyperparathyroid!!!!! I don't want my bones to continue getting worst. I just had a dexa scan again to compare it to the first one performed in 2006 to see if there's anymore bone loss.

we can't figure out why I keep having chronic constipation when I'm doing everything that's in the book to help it. It's not doing anything for me.
I've even changed my diet significantly. I'm drinking a high PH water balance, eating tons of green leafy vegetables, eating fruits and cut out eating meats all together and high sugar desserts and other foods I loved to eat but knew they weren't good for me. still the same with my bowels. no changes.

my dr. doesnt know whether she should refer me to an endocronologist? or to order an ultra sound of my parathyroid? or just wait to repeat the PTH level when my vitamin D level is checked again in four months.

I asked her if we could please have the ultra sound performed. what would it hurt? I told her maybe we're finally on a lead here and not to just stop where we're at instead of just waiting when something can be done to treat the problem.
I want to get to the root of the problem. not just keep treating the vitamin D level.

can a person have a regular calcium level and still have parathyroid disorder?
and 2nd important question, Do any of you think that a reading of 52 on the PTH test is anything to pursue?
even though it's flagged as being over the normal limits, it's not an outstanding number. it's still over the limit though. why would they put a number ratio then if it wasn't important?
they have to have a level to go by. so how can they say it's low when there's a cut off number? do you get my drift?

I'm concerned becasue it's my body that's going to pot here and not the doctors body. If it were them going thru the pain I feel each day for years, wouldn't they want to have the parathyroid checked out too?

especially with all the things I have wrong with me. It's right before our eyes and they dont' see it??????

My rheumy dr. said she's going to discuss my case with my primary dr. and see what he thinks we should do next. she figured an endo dr would know whether this is something to pursue or not.

please tell me if I'm making too big of a deal of this? should I just let it go and accept that I have all these bone and joint problems and bowel problems? and just forget about the PTH level being at 52?

thanks for reading this and for any possible contributions of advice.

Linda

 
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Old 08-23-2008, 02:53 PM   #2
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Re: High hyperparathyroid due to vit. D deficiency?

Hi. I have been with Vitamin D deficiency for over a yr now. I feel your aches and annoying pains. It is hard to tell someone I can get to work everyday but I can't lay my arm on the table or I hurt. From the research I have done ultrasound is not the best detection of a parathyroid adenoma. If you have a pet scan available it sounds like the best. My endo will not check mine unless my calcium goes crazy. Which I think is a little wrong but in light of the fact in medical terms if it is not there is no condition. I strongly believe the body drops the vitamin D level to compensate for the hormone level caused by a bad parathyroid so the critical Calcium level stays put. Just my feelings not proven. YET I am still getting my levels up. Have gone from a level 4 and 7 in vitamin D to 7 and 11. After taking prescription Vitamin D for 3 weeks and now on 800 a day. I am noticing some crazy neck burning, do not know if it is related, but I would be interested in knowing how your teeth have faired? Mine are in terrible shape with what the dentist called unusual placed cavities. LOL Oh! I forgot second time I went to Dr. he wanted to put me on antidepressants. I told him he was crazy. LOL

Last edited by feathermaid; 08-23-2008 at 02:58 PM. Reason: forgot something

 
Old 08-24-2008, 06:42 AM   #3
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Re: High hyperparathyroid due to vit. D deficiency?

Sorry YES YES YES you need to see an endocrinologist no matter what. I believe when your Dr. saw your levels he should have got on the phone and asked you who you had rather see. So now you have a chance to find the best one! Git er done. If you do indeed have a bad one and they get it you can be free of the dizziness, stomach problems, bone pains, ect. ect. There is also a quick sign for high calcium. On tapping your cheek below and beside your ear if it quivers and spasms it could mean your calcium is elevated. Calcium levels are never stable and fluctuate all thru the day and night. Good Luck and let us know.

 
Old 08-24-2008, 10:38 AM   #4
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Re: High hyperparathyroid due to vit. D deficiency?

Well you may not want to hear what Ive been going thru. I don't want to scare you. I was having pain in my joints a year ago and my bone density was in the Osteopenia/Osteoporosis range. My Calcium was normal and Vitamin D was low. My parathyroid was high. That threw red flags for my GP. She sent me to a endo and more bloodwork, thyroid biopsy, parathyroid scan. To make a long story short: My thyroid came back with many nodules and he recommended my thyroid out, he also wanted an eval for parathyroid disease. I went to the surgeon. Went in for thyroid removal and said he was going to take a look a the parathyroid but didn't think they would need removed. He got in and found that all 4 parathyroid were very large, so he removed 3 1/2 of them. Left the half because you need some to produce calcium. If I thought my life was bad before the surgery it got worse. The day after surgery my calcium dropped to really low, I think maybe it was 4 but I could be wrong. I guess I was close to death. I couldn't get out of my recliner and didn't even feel like talking. I was readmitted to the hospital and started on calcium IV. It took 8 days to get me high enough to go home. Since then I had to have 2 more trips for IV calcium and also taking large doses of calcium, at one time taking 28 tabs daily. I think my parathyroid is finally trying to kick in. I am now only having to take 6 a day to keep my calcium up around 8. I also have to take Rocatrol, which is Vitamin D to help the body absorb the large doses of calcium. I take 150mcgs of synthroid. The large doses of calcium has caused stomach problems. I guess I had to have the surgery but I am not sure which would have been worse the bone loss or my new problems. What I understand is that the overactive parathyroid glands soak up all the calcium which in turn cause the bones not to get what they need so osteoporosis is inevitable. The calcium levels will look normal but if the parathyroid is bad then that could be a false normal.
I have learned alot thru this so if you have any questions feel free to ask me. A good website for information is :
[url]www.parathyroid.com[/url]
Good luck and I hope I didn't scare you!
Dee

 
Old 08-24-2008, 04:19 PM   #5
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Re: High hyperparathyroid due to vit. D deficiency?

Feathermaid, with such a low vit. D only at 11, you probably should still be taking the high dose prescription vit. D. A daily dose of only 800 IU will only maintain your level, not bring it up. I was told this by one of my doctors, that is kind of an expert in osteoporosis, and it does make sense to me. Good luck!

 
Old 08-26-2008, 01:09 PM   #6
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Re: High hyperparathyroid due to vit. D deficiency?

I just wanted to post to tell you that I think your reply was great and I am sorry for all you have gone through, it is horrible. I am going to the doctor tomorrow for some testing to see if I have the parathyroid disease. We'll see, I hope things get better for you.
That's a great website for information, I agree.

Last edited by tinabean34; 08-26-2008 at 01:13 PM.

 
Old 08-27-2008, 05:29 AM   #7
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Re: High hyperparathyroid due to vit. D deficiency?

I thank you all for contributing and feel really bad Dee that you've had to suffer even more so after having had the surgery.
I'm not frightened that you posted what you went thru, because it may help others as much as it did me. I will try to stay away from them having to do any surgery if possible.
I'm pretty sure mine is ok. especially after reading about others problems with it compared to my levels.

I understand the feeling you're going thru about having had the surgery and would it have been better if you had just left it alone and suffered osteoporosis rather than what you're going thru now?
that's what I asked myself after having had a total hysterectomy back in 2005. I was all gun hoe to have it then, but then after doing more extensive research about my precious hormones, I am now having to take the patch form. the vivelle dot form. I'd much rather prefer my own natural form.
maybe I should've waited?
so I understand what you're saying.


I just got my bone density results back the other day before I wrote this post and they said my hip has had an increase of bone by a very good percentage and I did NOT take any type of medication for osteoporosis other than just vitamin D that was RX'd to me. I didn't know what TYPE of D it was though.

My spine did not change though, which remained the same. osteoporosis and at high risk for fracture.
my gyno dr. I saw the other day almost flipped when she heard I wasn't taking the prescribed medication by my family dr gave me two years ago.
I'm glad i didn't. especially seeing that only the D worked, compared to those horrible med's out there with all those bad side effects. I'm aiming for the natural course.
she told me it's up to me what I want to do with the info she gives me and that she highly recommends i take it so that I dont' fracture my spine.
at least my hip is better now.
I'm working on the spine.
I am doing research on what they call "the new biology". A scientist named "Dr.Robert Young" has performed studies for 27 years and swears by it that disease is caused by what we EAT and DRINK and that we can prevent certain diseases. It's tedious if you're used to eating the typical western diet, but little by little if you incorporate healthier choices and start studying about the PH in our bodies which is acidic vs alkalinity, it really works.
I know, because I've just started it a month ago and i"m already seeing results. Not to mention that the weight just melts off all by itself without even trying. you feel more energy and feel happy again. it's amazing.
they do say that sometimes one will feel worst before becoming better because of all the toxins that are being removed from our organs and body and blood. he's studied living cells under the microscope and has seen with his own eyes, healthy cells vs diseased ones and the improvement of them by changing our diets and drinking water high in PH.

I am living testimony. it costs money to take care of ourselves, but it's alot cheaper than having to go to multiple drs and have multiple tests that really dont' tell us anything when our bodies are screaming out that we dont' feel well and we all want an answer as to why we feel so horrible.
it's because our bodies are overly acidic. the human body is not meant to be acidic. but it's become this way from all the processed foods, the chemicals, and the way we eat.
I am a very sceptical person and it's taken me YEARS to even believe in taking vitamins. I never believed that vitamins really worked. and then you read these stories that because their not FDA approved, the companies who make the suppliments lie to us and put the least amount of the ingredient into the supplement and we believe we're taking something really good.OR, we take the suppliments and they just sit in the stomach and don't dissolve. what a waste of money!
who can we trust anymore?
I was very sceptical of Dr. Young's theory but I"m not anymore since I've tested it myself and feel the difference in my body. All this time I've been wasting when I could've been cleansing out my body and putting good back into it. I want others to know about it too. I know others are suffering with illness and being sick and tired all the time and the dr.s have no answers as to why. they just order the tests without really knowing the meaning of the tests. the scientists in the LABS who perform the tests know though.


I went searching about vit. D and came to a place that had all this great info on vitamin D and I had NO idea that we're supposed to be taking a certain TYPE of D, otherwise our levels will just keep going back down.
NO WONDER mine went back down.
this is what I found out:
His name is Dr.Willliam Davis and he's a caradiologist.
I'm quoting him.

"With vitamin D in particular, the prescription form is vastly inferior to the over-the-counter preparation. This is because the prescription form is ergocalciferol, or vitamin D2, not the effective human form, vitamin D3 or cholecalciferol.

When you're exposed to sun, what form of vitamin D is activated in the skin? It's all vitamin D3, no vitamin D2 whatsoever. Vitamin D3 is also far more effective than D2. People taking D3 (as long as it's oil-based) easily obtain healthy levels of vitamin D in the blood. People taking 50,000 units per day of D2 (the recommended quantity) remain miserably deficient, with minor increases in vitamin D blood levels. In short, D2 barely works at all. D3 works easily and effectively.

Moreover, D2 is the plant-based form. It is a form not found naturally in humans. D3 is the mammalian form, the same found in humans that exerts all its biologic benefits.

Then why is the prescription form of vitamin D2 (brand names Driscol and Calciferol) more expensive?

It's the same old pharmaceutical industry scam: Look for something patent protectable, regardless of whether it's superior to the non-patent protectable product, then sell it for exagerated profits. Though it is inferior and the science and clinical experience prove that it's inferior, you can still fool lots of people, including prescribing physicians. So what if you only make $50 or $100 million?

Don't fall for it. Prescription doesn't necessarily mean superior. In fact, the prescription form may be significantly inferior, as with vitamin D2. But the pharmaceutical industry carries such power and persuasion, who's going to know? "

There's more to this information of course and i was very excited to learn something on my own about the differences of these two vitamin D's on the market. I even told this to my rheumytologist about the difference.

Even my rheumy Dr. and her husband have vitamin D deficiency. it's more prevelent than we think!

I know I wrote a lot of info here, but I thought if it helped me, it may help others too.

and Tina, it's worth it to get it ck'd out and thank you Sue for replying too.

I wish you the best Dee and pray you don't have to suffer anymore.


Linda

 
Old 08-27-2008, 10:15 PM   #8
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Re: High hyperparathyroid due to vit. D deficiency?

I have Hashimoto's and prior to finding this out i was seeing a Trichologist due to so much hair shedding over a 7 year period. The Trichologist helped me with my low ferretin and was the first ever person to test my vitamin D and iodine, among other things.

It's been a big job raising my ferretin and my vitamin D and we couldn't ever find out why, but apparently it's common in people with thyroid issues. I once started a thread on Vit D, but is likely pages behind as this board moves quite fast. You blink and your post is 3 pages gone

With my iodine it responds well to iodine drops, but if i stop taking them then my iodine drops quickly again. This is the same for my ferretin. Have not stopped taking the Vit D as it's moved up rather slowly, but my thyroid doctor wants my Vit D to be at the highest end of the range.

All or most of these malabsorptions are common with thyroid sufferers and that is about all doctors can say on that matter it appears. However, in my situation my doctor went one step further and did a stool analysis to test for undigested food matter, bacteria, yeast, parasites etc etc. It turns out i have not been absorbing protein very much due to lacking sufficient pancreatic enzymes. This led to bloating after my meals. Also having undigested food matter in your system fermenting away isn't very health and it can lead to any number of other things according to research i've done.

The thing is that so many symptoms from various illnesses overlap each other. One symptom can fall under so many illnesses. I've read a lot of posts where thyroid sufferers experiences fibromyalgia-like symptoms as well as osteoperosis and a lot of aches and pains. A lot of doctors palm it off onto older ages, depression or the too hard box. You are right in persuing this, but i don't know what direction you should go in. It doesn't hurt to have a full thyroid study done. Not everybody will have precisely the same symptoms and we are all in varying stages of thyroid destruction so will feel different things.

At least you are at the half way mark and now you just have to push your doctors or find a new one who will get you to the finish line. A lady i met at the doctors surgery the other day said it took her 8 years to get diagnosed. One doctor told her she had the flu and told her to go home, have a lay down and take a headache tablet!! It took me minimum 7 years to get diagnosed. The thing is to keep pushing and never give up.

Best of luck

 
Old 08-29-2008, 08:25 AM   #9
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Re: High hyperparathyroid due to vit. D deficiency?

Audrey,
thank you for sharing your diagnosis with us and like many of us, I see it took you years to find out what exactly was going on with your deficiencies.
I always thought that because i had so many symptoms, there must be a disease I have, not a deficiency. and not till I discovered i had a deficiency did I ever think of doing research on it. It is VERY important to have all these hormones and glands all running smoothly, because with these deficiencies, they can cause a HOST of common symptoms that are related to diseases.

it's amazing. simply amazing all these things I've been finding out by people here and by doing my own searches other places.

the human body is really an amazing machine, isn't it? it has an entire little world working on in our bodies and if we dont' read about it, we have no idea how fine our organs and tissues, and fluids and cells all work hormonously together to have good health and to be able to digest the proper foods we put into our bodies so that they work properly.
Without proper digestion, we will feel tired and we won't get the necessary minerals and vitamins that's needed. that's another thing my gastro did was a stool test to see if there was fat in it. I forget the name of the test.
There was trace amounts of fat in mine which meant I had malabsorption, but malabsorption to what?? I think mine was sugar. I've had Low blood sugar attacks that were gettting worst as the years followed. My dr. put me on some type of enzyme pills. I eventually stopped taking them. I finally put weight back on and stopped having problems with the malabsorption after having my total hysterectomy back in 2005. weird, but true.

I had to have a glucose test performed and I had an attack right in the endocronolgists office. now that I'm eating healthier and lighter, my blood sugar level STILL drops a few hours after I eat. Especially if I find myself doing too much physically around the house which makes me burn calories too quickly. I'm finding it difficult to find the exact reason why my body is not properly digesting the food I eat.
I feel absolutely HORRIBLE and weak right after a meal. I should feel BETTER, not horrible, right? Mine goes as low as 45. My symptoms of an attack started the other day when it was at 66 which is considered not that low. I can't put our finger on what I'm doing wrong with my food intake.( our means, my spouse and I) he studies all this interesting stuff for years now.
I used to fight it and eat what I wanted, when I wanted without even a blink of an eye. no wonder my body became unhealthy. LOL
If I do too much physically, I'm burning my calories way too fast and I start getting a hypoglycemic attack. It's beginning to happen again. it had stopped for a long while. I wonder if this is related to the malabsorption again?

I'm JUST doing research on the PH of our bodies and how important it is to have it at a correct level. Too little means too acidic. too acidic, means putrificaiton of our tissues and unhealthy cells which causes disease.
If our bodies are too acidic, we feel too tired, our minds become foggy, we can't sleep well, etc.
it's more scienctific than the medical aspect but I'm finding that the scientific needs to be understood FIRST in order for us to maintain optimum health.
Then the medical comes into view. that's just my opinion though.
alot of people may feel different on this subject.

I appreciate everyone's views and really enjoy reading your replies.

any input is appreciated on my end. thank you all.

 
Old 08-30-2008, 06:22 PM   #10
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Re: High hyperparathyroid due to vit. D deficiency?

Stool analysis tests are terrific, but your doctor ought to be able to read the test results and give you helpful feedback. Maybe the lab which did the testing didn't supply sufficient information? Still, i think the doctor needs to know his stuff regardless of the labs.

Fat malabsorption isn't as clear cut as protein or carbohydrate malabsorbtion. Fat malabsorption is basically the inability to absorb fats which are found in foods eg: butter, margarine, oils, meat, fried and processed foods, during digestion.

Fats found in stools is called "Steatorrhea" and is a sign of fat malabsorption. You said they found traces of fats in your stools. I'm not sure whether it matters if they found just traces or a lot, but likely any fats in the stools would be classed as fat malabsorption.

Unexplained weight loss also usually occurs with this type of malabsorption, but then again it would maybe depend on how much fat you are not absorbing. If someone had a chornic problem they would likely lose a very noticeable amount of weight for no reason, but if you had a moderate problem it might not be as noticeable. The inability to absorb fats often occurs in combination with other types of malabsorption and in many conditions that involve malabsorption. The digestion and absorption of fats is a more complex process than that of protein or carbohydrates. This increases the possibility of absorption problems because each step in the process is essential.

You could have more than one type of malabsorption. Not abosrbing carbohydrates is most often linked to lactose intolerance and this is why a lot of people are dairy intolerant. Carbohydrate malabsorption is also connected to sugar/starches/fibre found in rice, vegetables, bread, potatoes, fruit and also common table sugar.

Protein malabsorption, which is the one i have, is most commonly linked to problems with the pancreas and affects proteins found in meat, eggs, beans and can lead to symptoms like hair loss, dry skin and edema which is a form of swelling and can appear anywhere on the body.

As your doctor has done the stool test, i'd be pressing him for more information or start doing some of your own research and then possibly move onto a new doctor. I've learnt you can't simply go to a doctor and take his/her word for it. You have to do your own research in the background. You don't want to be spending years in frustration and pain if you don't have to.

Come to think of it, a lot of natural therapy type doctors can run various tests too. Perhaps you could visit one who has an understanding in malabsorption and digestion issues. I once visited a naturopath for my messed up menstrual cycles, she didn't end up helping me with that, but she kept saying she was picking up on the fact that i had too much mucous in the gut and she couldn't work out why. She kept telling me to give up dairy. I didn't pursue things with her and found another naturopath who did settle my menstrual cycle with herbs, but due to having my stomach bloating she also 'assumed' it was dairy related. It's only now that i've had the proper testing and discovered that it's not dairy, but protein related that my stomach has had relief.

In your case, you already know it's related to fats and could possibly be linked to something else, so you already have a few pieces of the jigsaw puzzle. If your doctor cant help you, you alteast have a little more info which you can pursue with a new doctor of natural therapist.

ps: i think you mentioned hypoglycemic episodes? I don't have actual hypglycemia, but do get something very similar. Sometimes it happens if i haven't eaten and other times it can happen when i've had breakfast, morning tea and am waiting to go to lunch at work and i'll feel weak, my hands will get the shakes and i want to pass out. I've had this for years but it's intermitent. I have read that hypoglycemia can be related to thyroid isorders. This would tie in for me as i've got Hashimoto's. Not sure whether you mentioned having a full thyroid test done?

Last edited by Audrey-B; 08-30-2008 at 06:25 PM.

 
Old 08-31-2008, 07:45 AM   #11
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Re: High hyperparathyroid due to vit. D deficiency?

Audrey,
your reply was fantastic and full of info. You really seem to be on top of malabsorption problems. I didn't know the differences until I read your post.

I didn't do any type of research on my dx of it five yrs ago. I didn't go on the computer then as much as I do now.

Yes, I did have my thyroid tested about five months ago just to make sure. it came back normal.

thanks again for all the info, have to run.

 
Old 08-31-2008, 10:05 PM   #12
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Re: High hyperparathyroid due to vit. D deficiency?

lintek - i never used to think of doing my own research until i found out i was anemic, but couldn't work out why. Now i always do back up research and never rely solely on a doctors word. Often doctors don't have the time to give you an "information session".

Just be careful of doctors who say your thyroid is "normal". Mine was apparently "normal" for the about the last 10 years, but when i found a decent doctor and showed him blood test reports from 1998 he saw many issues which ought to have been dealt with.

 
Old 09-03-2008, 11:50 AM   #13
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Re: High hyperparathyroid due to vit. D deficiency?

NEVER NEVER RELY SOLEY ON THE DOCTOR'S WORD. They cannot be all knowing and we have a wonderful resource in the internet and these forums and web md, whatever. Do your own research! Fight for your health. The Doctors are so egotisical and think they know it all. How could they possibly keep up with every little thing and disease and new problems that come out. They can't. Plus we know our bodies better than anyone else. We know what we are feeling they do not. Every person is different and everyone's make up is different. Research is the best thing you can do for yourself plus i think it keeps you a bit more mentally sane that you are taking part in your own care. If your doctor doesn't believe in that partnership between doctor and patient - MOVE ON!
Hugs~!

 
Old 09-03-2008, 05:22 PM   #14
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Re: High hyperparathyroid due to vit. D deficiency?

Audrey, maybe you can answer a question for me?

I am currently taking 2000 IU (vit d) daily to raise my vitamin D and it is working. It started at 22 a month ago or so. After 2 weeks of Vit D, it raised up to 62, and 2 weeks after that it dropped to 55.
My question is though, the Dr also has be taking 1200 of Calcium a day in addition to me making an attempt to eat more in my diet and it has not raised one bit, it is still right at 9.8, any ideas?
Thanks!

Lynda
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Old 09-04-2008, 03:08 PM   #15
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Re: High hyperparathyroid due to vit. D deficiency?

I got my lab report in the mail today and my calcium level actually dropped to 9.2 not sure if this is a absorbtion issue or not.. thanks...
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confused about high calcium kkl Osteoporosis 71 04-13-2008 11:20 AM




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