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frenchie77
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 09-03-2003 09:15 AM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
Okay, here is my story...
26 yr old female-
My mother has Lupus, sister Crohns, and several uncles have intestinal problems. Yesterday I went in for a colonoscopy and upper endoscopy because I have been having strange symptoms for over 2 years- severe diarrhea, stomach cramps, nausea, and vomiting, extreme hair loss (about 50%), body aches, headaches, fatigue, dizzy spells, and tooth decay. My blood tests have shown that I am severely low in calcium and iron and this is why the doctor assumed I may have Crohns or a malabsorbtion problem. Well, after the colonoscopy yesterday he said that my colon, stomach, and all looked normal and that I would now have to wait to see the results of the biopsies. I am very confused as to what else could be going on with me and really want to get my symptoms taken care of as soon as possible. He did say that I may need to have another exam where he gives me a pill/camera thing to swallow (don't remember the name) that can take pictures of my small intestine to make sure that there is not a problem there. Does anyone have any advice, ideas, or suggestions? Some of my symptoms are strange and I would like to know if anyone else is suffering the same thing. I am currently living in France and want to be sure that I am having the best treatment possible, though I do feel that the doctor I am seeing is very thorough. Another thing I should add is that I was diagnosed with PCOS- Polycystic Ovarian Syndrome, about 4 years ago and take multiple meds for this- Glucophage, Spironolactone, Mircette, and then Paxil and Xanax. Would any of these meds be causing such symptoms. Thanks bunches for any info...

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Tammynoska
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Posts: 224
From:Miami, FL, USA
Registered: Aug 2003

posted 09-04-2003 01:50 AM     Click Here to See the Profile for Tammynoska     Edit/Delete Message   Reply w/Quote
These are the strange symptoms you listed: severe diarrhea, stomach cramps, nausea, and vomiting, extreme hair loss (about 50%), body aches, headaches, fatigue, dizzy spells, and tooth decay.

I listed below the side effect you mentioned above that each of the drugs you are taking can cause (there are many more side effects these drugs can cause, but I only listed the ones each one can cause that you say you are having):

These are the drugs you say you are taking: Glucophage, Spironolactone, Mircette, and then Paxil and Xanax.

Glucophage (metformin): dizzy spells, fatigue, nausea, vomiting, headaches, stomach pain

Spironalactone: fatigue, headache, stomach cramps, nausea, vomiting, diarrhea

Mircette: loss of hair (all of it), headache, dizzy spells, stomach cramps

Paxil: headache, dizzy spells, nausea, vomiting, fatigue

Xanax: headache, dizzy spells, fatigue

Drugs can interact, and lead to other side effects; in your case, perhaps your tooth decay is due to these drugs interaction with each other.

I had one friend who took a medicine for 5 years without problems. Then one day she developed blurred vision, terrible headaches, and dizziness. Her doctor put her through several tests. She stayed in the hospital for one week. They found nothing. Not once was her medicine questioned.

I asked her what medicines she took. We looked them up in a drug book and found that one of her blood pressure medicines caused such symptoms. You have to realize that a medicine can start symptoms at any time, even years after you are taking it with no effects.

She stopped the medicine. In days her symptoms were gone! She asked her doctor to give her another one for her blood pressure. 2 weeks after the new one, she started to have a mysterious coughing. Again, we looked up this drug in a book and found that coughing was a side effect! This time, my friend went to her doctor angry about what was he doing to her giving her drugs that had such terrible effects.

Sometimes you have to weigh the side effect of the medicine versus getting treatment. I took drugs for asthma for years without problems, then one day I suffered terrible immune system problems. All were related to the asthma drugs. I stopped them and found other ways to treat my asthma. Now I do not suffer from asthma.

You can find the side effects for any drugs by doing a search on the internet---the drug companies list their effects online.

Good luck.

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Tammynoska
Senior Member
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Posts: 224
From:Miami, FL, USA
Registered: Aug 2003

posted 09-04-2003 02:19 AM     Click Here to See the Profile for Tammynoska     Edit/Delete Message   Reply w/Quote
frenchie77, as you can see, sometimes drugs can cause side effects that are worse than the problem they are treating. Sometimes they can even cause death or crippling diseases as side effects. You have to then make a decision which is worse: the effects of the drug, or your original problem. At 26 years of age, you probably never questioned that a medicine you would get could cause you more harm that could ruin your quality of life, yet no doctor would acknowledge your new symptoms as being related to the drugs.

You are doing the right thing: first you went to a doctor for a full evaluation. Now, so far one test has shown no systemic problem. Now if the other tests reveal no problem, then you will have to seriously question the drugs you are taking, as many of them can cause the same symptoms.

Sometimes stomach problems can be avoided with certain drugs if they are taken with a full meal, but sometimes even eating foods don't prevent the stomach problems. In the future, you should get into the habit to read the potential side effects of any medicine you are given, and keep these in mind as you take the meds and keep a watch for them. Most manufacturers post online the adverse effects of their medications. Just type in the medicine name and adverse effects, and you should find the manufacturer's literature.

Polycystic Ovarian Syndrome can cause the risk of diabetes, high blood pressure, and even loss of hair (as can that one medicine you are taking). These are possible risks, but you may not necessarily get these problems.

The spironolactone is used to control excess hair growth in the wrong places, the glucophage controls the male hormones levels as can the birth control you are taking. While there isn't a cure for PCOS, there are other non-medical treatments you can have that will let you get off of the spironolactone, glucophage and the mircette, such as:

Treatment for excess hair growth through:
Electrolysis, in which hair is permanently removed by electric current applied to the hair root.
Depilatories, chemical hair removal products applied to the skin.
Waxing, which pulls the hair out by the root.
Shaving.
Tweezing.
Bleaching.

None of these non-medical treatments have any of the serious effects you are getting from those medicines. I can't imagine having to take those medicines until your menopause, and suffer all of those effects.

Take care.

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hepatitiscure
Junior Member
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Posts: 14
From:San jose, CA, USA
Registered: May 2003

posted 09-06-2003 04:08 AM     Click Here to See the Profile for hepatitiscure     Edit/Delete Message   Reply w/Quote
Hi frenchie,

Do you have bad breath, pain at your sternum(epigastrium), stomach noises, foul smelling stool, burning sensation, pimples(acne)? Let me know.
In the mean time, avoid eating foods that i have mentioned in other postings.

J'ai vecu a paris pendant 2 ans. Abientot.

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Tammynoska
Senior Member
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Posts: 224
From:Miami, FL, USA
Registered: Aug 2003

posted 09-06-2003 07:19 AM     Click Here to See the Profile for Tammynoska     Edit/Delete Message   Reply w/Quote
The problems you listed, frenchie77:

quote:
I have been having strange symptoms for over 2 years- severe diarrhea, stomach cramps, nausea, and vomiting, extreme hair loss (about 50%), body aches, headaches, fatigue, dizzy spells, and tooth decay....

are far too severe to be cured just by avoiding eating certain foods. I believe your original suspicion is accurate: that you are suffering side effects from some or all of those drugs you are taking. A couple of those drugs you are taking can lead to problems with vitamin and mineral levels, including calcium and iron as you wrote you tested low on.

While it is good to avoid troublesome foods, as hepatitiscure advises, you are taking several, not just one, drugs that cause serious intestinal problems and upset, and as long as you take those offending drugs, you will have those problems, no matter what you do or don't eat.

If the pictures of your small intestines show no problems, then it is highly probable your medicines are at the root of your strange symptoms. The only way to tell is to stop your medicines; ask your doctor to help you wean off of them to see if your symptoms improve. If your symptoms do disappear after stopping the medicines, then you have your answer.

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frenchie77
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 09-09-2003 10:06 AM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
I got my blood results back today, but still have to wait for the biopsies from the colonoscopy. Trying to get an appointment with the doctor to get these interpreted, but thought I would post them to see if anyone understands-
eosinophiles- high at 14%
total iron binding capacity- high
coefficient of stauration of iron- low
albumin-low
globulin alpha 1- high
globulin alpha 2- high
globulin beta- high
globuline gamma- normal
globulin A\G ratio - low

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frenchie77
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 09-09-2003 10:20 AM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
Tammynoska, I can't believe that I haven't seen your posts until just now. For some reason they have not been showing up, even though the first one you posted was on the 4th. I really, really appreciate your long replies and thorough investigation for me. That is scary to think that all my meds could be causing me this one big problem. If this is the cause then i will definitely feel betrayed by my Endocrinologist who promised to make me feel better. And, you are so right by mentioning that doctors don't seem to make a connection between a persons medicines and other health problems. They always ask me what I am taking, but then leave it at that. I will definitely have to think this through and see what my finally results are and what the doctor says here. If there is a lack of any real problem then i will know where to go next. This is frightening to me.... You really helped open my eyes and I will keep you posted. Thanks so much for the info! You will never know how much it is appreciated.
ps- The only reason that I added my list of meds on to my oringinal post was because the doctors here in France always question the form of treatment I am using for my PCOS. They are not at all accustomed to using Metformin/Glucophage. I am glad that I included that in my post. It was truly an after-thought. Thanks again!

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frenchie77
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 09-09-2003 10:40 AM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
Merci beaucoup Hepatitiscure,
I wanted to answer your questions below:

<<<<Do you have bad breath, pain at your sternum(epigastrium), stomach noises, foul smelling stool, burning sensation, pimples(acne)? Let me know.>>>>>

No real problem with bad breath. Occasional pain in the sternum (was told this was probably bc of my lack of iron and calcium) but not too severe and it is rather brief. Yes, stomach noises with bloating and gas- especialy since i have had my colonoscopy done. That is why i did a seperate post on that because I thought it may have just been a lingering effect , but 1 week later and it is worse than ever. And again yes- foul smelling stools but no real problem with acne. I have been on Spironolactone and it has help my complexion considerably.
Thanks so much for your posts and input. Let me know what you think.

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frenchie77
Member
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 09-09-2003 10:53 AM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
Another thought i would like to add...
I am concerned that it is possible my meds are causing these symptoms, but at the same time I am scared to get off of them. They have helped so much with my symptoms of PCOS. I was quite hefty, excess water weight, severe acne, facial hair, extremely painful periods (with terrble clotting)to the point i would cry and couldn't leave home, or lack of period, and i was lactacting from one of my breast. Now all that has changed and I am normal weight, normal periods, good skin, etc, etc, and a much better self esteem. The effects of PCOS are quite devastating to a girls social life and i feel 100% more confident in that respect. I guess if these meds are the culprit for my new-found problems, then i will have to choose between the lesser of the 2 evils.

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Tammynoska
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Posts: 224
From:Miami, FL, USA
Registered: Aug 2003

posted 09-10-2003 07:45 AM     Click Here to See the Profile for Tammynoska     Edit/Delete Message   Reply w/Quote
frenchie77, if the meds do end up looking suspiciously like your problem, you can try these methods I am suggesting to you below, rather than getting off meds that obviously have improved your life:

You can try to take all of your medicines with full meals, not snacks, to see if that eliminates or lessens your stomach problems with them. That is a conservative method. Now, from what I read on your condition (I'm not a doctor or in the healthcare field), PCOS can also lead to hair loss, so it is hard to tell if the PCOS is responsible or that one med I found you are taking that can lead to hair loss. It could be you would have hair loss no matter what. I know that is socially very embarrassing, and you may have no recourse but to cover that hair loss with a wig.

You could also try to break up during the day when you are taking your pills. I don't know if you take them all at once, or space them out, but if you take them at once, you may try spacing them out with different meals to try to lessen the upsets.

Now, since dizzy spells are very hard to live with, you could see if taking a lower dose of the same meds will provide you relief from the dizzy spells and yet still help your condition. However, maybe full meals with the offending meds will take care of the dizzy spells. You should ask your endo to help you. You should tell your endo that you think that you may be having side effects from the pills and if he can help you try to lower to a dose that will remove the dizzy spells, or at least monitor you as you lower your dose.

These are some alternatives you can try. It is obvious you need some if not all of these medicines for your condition, but you may need to lower some doses or find ways to take them that will lessen, if not eliminate, the bad side effects. Try first just spacing out the pills and taking each doses with full meals, not snacks. Take them after the full meals, not before, as you are looking to have the food help to eliminate the stomach upsets, cramps, and diarrhea.

Maybe just doing that will help, even with the dizzy spells. If not, then see about going on lower doses, but don't get off the pills, as you do need them from what you wrote. Don't despair, frenchie77. Don't feel that your endocrinologist has betrayed you; have you even told him of your side effects and your suspicions the meds are the cause? Sometimes endos know of the side effects, but also know that you, as a patient, have no choice because of your disease to take the pills, so they don't say anything, because what can they say?

I am under the treatment of an endocrinologist too, for my thyroid & pituitary disorders, so I know what it's like having to deal with an endo with an ongoing ailment. You might also ask your endo if there are alternative medicines you can try to see if you have no side effects; but try the foods first, spaced out thing, then see if your endo might cut back the doses to lessen bad effects, if that is possible and still maintain the benefits of the medicines. Sometimes you have to work a bit to find the right doses and the right ways to take them, to be happy lifelong.

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frenchie77
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 09-10-2003 12:19 PM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
Tammynoska,
Thanks so much for all your support. You are such a trooper! I read the post about your own difficulties and hope that things are better for you. It sounds like you have had an extremely difficult time. Quite amazing to see how supportive you have been to others in your own time of need. It does not go unnoticed! You have given me some great suggestions. Thanks!
Wanted to update you with the latest news-
Talked to my doctor today and he said that the results of my colonoscopy and upper endoscopy came back fine, but that my blood work shows inflammation somewhere in my body. I have an appointment for next Wed. to discuss the next step. He mentioned that he may want to view my small intestines with a new technology gadget. It is a small camera that I can swallow and it will take pics of my inside. I am very anxious to find out if I actually have a real physical problem otr if I need to cut back on my meds. Do you think that the medication could cause my blood work to show I have inflammation? Also, do you think the inflammation could be elsewhere in my body, other than my intestine? I guess right now i am grasping at straws.
I also got an appointment with a dermatologist next week to look at my scalp to see if I have any other conditon that would cause the excess hairloss. Just trying to rule things out and get to the bottom of it all as soon as possible.

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Tammynoska
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Posts: 224
From:Miami, FL, USA
Registered: Aug 2003

posted 09-10-2003 06:41 PM     Click Here to See the Profile for Tammynoska     Edit/Delete Message   Reply w/Quote
frenchie77, good news about your colonoscopy results. Inflammation is inflammation, and no matter what is causing it, it would show up in your tests, even if the drugs are the cause. Of the drugs you mentioned, in my search I found only Mircette, as a contraceptive drug, being associated with any inflammations. Colitis was one of them, which is inflammation of the colon, and vaginitis, another, which is inflammation of the vaginal area.

Do I think your inflammation could be elsewhere than your intestines? Well, you mentioned you have body aches---you should think yourself any place that you feel aches, because inflammation usually causes tenderness in the area. Could be your reproductive organs, since you do have PCOS; but I don't know where you feel aches. The thing to figure out is if your inflammation is due to an infection or an irritation. But, frenchie77, let's not jump to conclusions. The best thing is to rule out your intestines first, if you can by using that little gadget thing you mentioned that you swallow.

If all looks clear, then you can feel safe in assuming your stomach/intestine symptoms are related to the drugs effects. If you have diarrhea long enough, and cramps, in time your colon will become irritated and inflamed from the abuse, no matter what is causing these symptoms. That new technology gadget sounds like a great deal, and would give you peace of mind in one way.

I hope the dermatologist you see is more helpful than the ones I have seen. Brace yourself, because you may not get the answers you seek, but don't despair. The reason I say this is because I went to several dermatologists to find the cause of a rash on my arms, and an inflammation on my face, and none of them cared to find the cause, they only gave me topical medicines to treat the symptoms. I left very disappointed in all the dermatologists, that none would care to find the cause, but then it occured to me that was probably a task beyond their scope. So I would be surprised if the dermatologist you are going to see does anymore than give you medicines to try to stimulate hair growth and treat your symptoms, and ignores trying to find the causes. They aren't God; they're just dermatologists.

However, you have a very solid reason to be losing hair at your age, and that is the PCOS. Mircette has been known to cause hair loss also, but the fact that you have PCOS kind of points to that as the culprit, especially since you indicated you had very bad symptoms of the disease.

Now, even if all the tests you take show nothing, I do believe your doctors still won't make the leap to blame your medicines for your troubles. I found that problem myself. You probably will have to initiate yourself any changes in your meds doses if those are the only probable reasons left; just let your endo know what you are doing so you don't cause yourself new troubles.

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frenchie77
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Posts: 35
From:paris, france
Registered: Sep 2003

posted 10-09-2003 09:53 AM     Click Here to See the Profile for frenchie77     Edit/Delete Message   Reply w/Quote
I am still in the dark as to what is going on with me, but my doctor is slowly testing everything. My colonoscopy and endoscopy came back as normal as well as the biopsies, but he was of course unable to see the small intestines. This may be where my problem lies. I had another exam where i swallowed a pill with a camera on the top that took pictures of my insides every second. This is going to help to see what is going on in my small intestines. I won't have the results back from that until later on this month. Since my last blood work the doctor checked my urine and stools to see if i am loosing protein- no problems with urine, but have yet to recieve the exam on the stools. I also had another blood test that showed I am low in my IgA and IgG Immunoglobulins. Haven't a clue really as what that means, except I am assuming that it must be immune related. I will post again when i get more answers, but if anyone has any ideas feel free to write! Just tired of sitting and waiting! I am also now using Minoxidil for my hair loss and having shots of vitamin H and B5 to aid in regrowth.

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