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1522652 tn?1291241954

DID ANY OF YOU SUFFER FROM CHRONIC UTI'S AND KIDNEY STONES BEFORE YOUR DIAGNOSIS? CAN YOU PLEASE TELL ME SOME OF THE SYMPTOMS YOU EXPERIENCED BEFORE YOUR DIAGNOSIS

I am so confused and really tired.  I am 45 yr. old female, and for most of my life I've suffered from chronic uti's and occasional bladder, kidney infections.  I think I was 21 when I passed my first kidney stone, it was tested and found to be made up of calcium as were all the ones that I passed afterwards.  As fast as I could pass one I could have Ivp or ultrasound a week later and would have new ones.   They always only affected my left kidney, never the right.   I questioned numerous specialists, nephrologist, uro's, pcp's as to why I had stones and why they only affected that kidney.  I was always told that they didn't know what caused them but I had high calcium levels in my urine.  So early on I was told to avoid dairy products, which I did, yet I still formed stones.  In 2004 my urologist determined that my left kidney was only functioning at 19% and recommended removal of the badly diseased and scarred kidney.  I gladly obliged, as I was so tired of the frequent stones and pain.    I did well after my surgery and returned to my normal duties within 3 wks.   During the tests that I endured prior to my surgery, it was found that I had a large fibroid in my uterus and hysterectomy was perfomed 9 mos. after nephrectomy.  

Now, from the time I had my first cycle, I suffered from severe, debilitating cramps and heavy bleeding and clotting. I always complained as I didn't feel it was normal, but was always advised by gyno's that some women just had it worse than others.  I missed so much school and work due to the fatigue and pain associated with pms.  I've always had an intolerance to cold and have always had cold hands and feet, even in summer months.    Though my cycles were painful and heavy they were always regular and always 7 days.  Until approx. 2 yrs. prior to hystectomy, they became very irregular and much heavier.  Well when the fibroid was found that explained that.  

I still managed to function and maintain a pretty normal, healthy lifestyle after that surgery, which was in Nov. 04.
Then in June 06, I began having muscle pain all over, bone pain in my shoulders/elbow and was diagnosed with fibro.  was tested for RA, my factor was elevated but RA was ruled out.   Then my mental health began to suffer and I began to experience anxiety attacks, couldn't deal with any stressors in my life.  It got to where I couldn't leave my house, paranoia.   Okay, so then I'm diagnosed with post traumatic stress disorder, from an event that occured over a year prior to the onset of my symptoms.   But with everything going on, I accepted that diagnosis, and this eventually led to my early retirement.  Now throughout this ordeal I didn't understand why suddenly I'd gone from a "highly functioning" and successful career person, to a paranoid, crybaby, grown woman.    
I worked in a high stress job for 21 yrs., as  a Correctional Lieutenant in charge of a Maximum security prison, I did alot of training, report writing, etc.   I loved my job and it was one of the "good stressors" in my life.  

Shortly after retirement, I began having numbness, burning, tingling, shock sensations in my hands, fingers.  2 nerve conduction studies diagnosed with carpel tunnel.  as well as nerve damage, impinged nerve and disc herniation at the c2 and c3 disc.  I refused surgery and have lived with the pain.   Now beginning in 2010 I began to experience pain in both my left and right flanks.  Nothing excruciating, but enough that I knew it was there.  Felt like small stones moving.   CT scans reavealed nothing.  Then I developed this ugly fungal infection under the nail of my ring finger.  I was told that the medication used to treat it was very toxic to the liver and my pcp refused to give it to me.  I was told that they don't know what causes it and that it would probably be there the rest of my life.  I think that was in May or June.     Then I became very lethargic, chronic fatigue, mental fog, could not concentrate, no interest in anything, could not remember things, very teary.  Couldn't sleep even with my medication for sleep,  300 mg Seroquel at bedtime.  So I just sat around in a complete stupor.    Doctors visits~ diagnosed with depression/anxiety.

I began to experience severe shortness of breath with balance problems.  I was told it was panic attack and hyperventilation.   In August or Sept. my labs showed that my vitamin D was low.  Well I thought that was because I hadn't been eating well and hadn't spent alot of time in the sun for the last 2 years.  so I took the 50,000 mg vitamin d3 1 x wkly for 4 wks.   then 2 mos. later I prescribed another round of it.  The vitamin D cured the fungal infection.
My b12 was Normal according to my doctor, but after reading the symptoms of deficiency I insisted that he give me b12.  The b12 helped to clear my mental fog, gave me a little energy as well as completely cured the neuropathy symptoms in my hands, and the pain in my shoulder and back is gone.

I still am fatigued, lack of interest in much of anything, appetite not very good, though I don't lose any weight.  Never have I been very large always maintained between 120-130.  But since retirement weight went to 143.  Now I'm at 149.  Doctor say's it's normal and comes with age, lol.   My husband asked him how can that be when I don't eat, his response was "inactivity".    My symptoms now, in addition to the fatigue and apathy, are dry, tired eyes, dry mouth, though I drink alot, heart pounding, I can hear it in my ears, puffy hands and face, sometimes my feet feel puffy, but not alot.  I have this bulge around my waist that's never been there until the past 7 mos.  And my newest symptom is this "salty" taste in my mouth, my hands also taste salty, lol.  My dog loves licking my hands and feet now.  
I also have painful, bruised feeling soles of my feet, and the palms of my hands~this symptom began after my 2nd round of vitamin D.
At doctor visit on monday I asked about my thyroid, he only tested my TSH and not the other, because he said it was normal.  He did do an ultrasound and said that my thyroid was perfectly fine.  I asked what my calcium level was prior to putting me on vitamin D, he said it was normal.   I do not have my numbers, but I will get them and post them here in hopes that someone can help me.    I just want to be normal again, this is a horrible feeling.   It's a feeling of not being well that's hard to describe and I feel like the doctors dismiss me as being a hypochondriac, but I really know that something bad is wrong.  I also within the last few months feel like my neck is larger than normal, I told my doctor this in October, and he said it was due to my extra weight gain.    Someone please help!   thank you
15 Responses
219241 tn?1413541365
Boy! You have the same doctors we all love to hate. Those who don't look at the bigger picture are a total waste of time and effort!

It is not normal to have heavy crampy periods and I wish one day all male doctors who say that get hemorroids and painful ones at that and have a female doctor say, Oh that's normal put up with it. Obviously you were told that is was a fibroid causing that bleeding, and unfortunately that is not always the case. Often in hypothyroidism periods get like yours. Low or lack of Vit K also is a factor.

Of course, you need to get other thyroid testing done. TSH alone is not the whole picture and it sounds like you may well be hypo.

Do demand copies of your blood tests. Normal calcium is not good enough answer. It needs to show corrected calcium. The total calcium will just show you have some in your system, but it is the corrected calcium which shows what is available for use, and if that is high, then it might explain your kidney stones. There are several types and high calcium can lead to some forms of them. Avoiding dairy products is now not part of the medical understanding of how the stones are produced. It can be due the parathyroid glands being tetchy and out of whack. You can be vegan and still get calciferous stones!

I think it may well be time for you to start the hunt for a decent doctor!




1522652 tn?1291241954
thanks for the info aussie! and i like the thought of some of my docs ending up with a huge hemorroid and having to live with it, as some of them are a real pain in the arse and we have to deal with them! lol  I've concluded that they're all in it for the money, therefore they don't want to prevent chronic illness or cure it, the only way they can keep making money is if they "Treat it", so, they're depending on us to keep them in business.  Okay, sorry for that little rant, but I'm very angry.  Angry that I've paid for health insurance only to have doctors "treat" a problem but never find or treat the cause.  I know that there is a link beginning with my chronic uti's as a child, to my severe pms as an adolecent into adulthood, and then on to my chronic kidney stones and infections as an adult, and then the loss of my kidney, as well as the problems I'm experiencing now.    

My question is what specific tests do I need to request to accurately check my thyroid, parathyroid, and my calcium levels?  Also, are there any specific questions that I need to ask.   As far as finding a new doctor, I am trying to find an endo, and there are none in my immediate area.  And like I said if you've ever been diagnosed with depression, it's hard to find one who will take the time to listen and do extensive tests when the initial labs show nothing.   thanks for your help~mel
219241 tn?1413541365
Hee hee Glad you got my hidden joke!
Yes, they don't want us well, now do they? Then they wouldn't get their kick backs from the pharmaceutical companies and their waiting rooms would only be full of little kids with marbles stuck up their left nostril.

  You need to ask for TSH, Free T3, Free T4, TgAb, TPO Ab, TSi (just to rule out Graves disease, plus it makes you look intelligent when you ask for it) PTH (which is parathyroid hormone) and Corrected Calcium. Also ask for full blood tests, Creatinine, eGFR,  these both test the kidney function.

  I would be making a short list of your history including dates and surgeries, to take with you. I would be asking if there is a correlation to these things.

I have had severe depression and was misdiagnosed for over 15 years with depression. I lost my kids, my life! Every time I see a doctor now I am labelled with Anxiety, so have had to fight my way through the BS of stigmatisation. I had undiagnosed severe Hashimoto's for those 15 years. (Severe depression is part of the Hashimoto's!) Had two thyroid surgeries and my meds are not working well at all, 3 years after removal of thyroid.

We have to be our own advocates and be  pro-active!
1504101 tn?1299158864
Sorry, I didn't read the whole thing yet..endo appt in an hour. (I promise to read it when I get back). I ~was~ diagnosed with I.C. (interstitial cystitus), constant urination, constant thirst (which I didn't know was a part of thyroid..just always have something to drink at hand), pains (like UTI). I took Elmirion for a year, had a cystoscopy..found no sign of I.C., but did find a small infection. (we didn't know if it was the Elmirion working or not *sigh*). I ~still~ had the going ~alot~, so I started Vesicare..which helped ~greatly~! I ran out just after my surgery (TT), and have "experimented" on myself and not taken it since...and have not needed it! Who knew?!?! I'm not saying if you have I.C. that the thyroid can "cure" it, just that mine seems to have been a thyroid/hormone related issues and not true I.C. (or maybe thyroid induced I.C.)
1504101 tn?1299158864
Oh, I forgot. I had E.Coli in my kidneys back in '93 also...so I did (haven't had a "out break") get pain in that area too.

Hope ya start to feeling better.
:)
649848 tn?1534637300
COMMUNITY LEADER
I agree with red that you need a full blood work up, including TSH, Free T3, Free T4, antibody tests.  Also, get vitamin D, and B12 tested.  B12 deficiency can cause the tingling and other things.  It also causes extreme fatigue.  

Your parathyroids control calcium use in your body.  You might want to take a look at www.parathyroid.com........  I think you will see a lot of your symptoms there.  

It really does sound like you are hypothyroid.  TSH is a pituitary hormone, and should never be used, as the sole basis, to diagnose, rule out, or treat a thyroid issue.  
Avatar universal
You've been give lots of great feedback already.  I just wanted to throw in this link to a great article, written by a doctor, that covers this subject area thoroughly.  I think you will find it interesting and worthwhile.

http://www.hormonerestoration.com/Thyroid.html
Avatar universal
I just read your post then found this info on this website when I read their description of Hashimoto's - I had never heard this before!  Go to the link and read all the way down to the end of the page about this:  type 1 polyglandular autoimmune syndrome (PGA I) - it talks of nail fungus being a symptom!

http://www.medhelp.org/medical-information/show/2964/Chronic-thyroiditis-Hashimotos-disease

Avatar universal
Hello!
Urgh. I am SO "Hip to your struggle". I first noticed my "agues" when I was 38 yrs old. I began to get hot flashes, night sweats, fatigue, alarming weight gain, and irregular/painful periods. I went to my Dr, she gave me a pat on the hand and said,"This brings everyone in dear. You are starting perimenopause." No tests other than one for anemia.
At age 40, things were getting worse. I was 30 lbs overweight (I'm quite active and had not changed my eating habits) and I was getting what turned out to be gall bladder attacks. I was tired all the time and vitamins didn't help much. I changed my diet to be more "gall bladder" friendly. I was now having unexplained low blood sugar attacks, frequent yeast infections, and I was losing interest in sex. My husband also noticed that I had become particularly difficult to be around about 1 week before my period. Still the blow-off from Drs.
At age 42, I hurt. My back, hips, neck, I had frequent headaches in the morning, the hot flashes and night sweats were constant, I had intractable heart burn, and had passed 6 kidney stones in 2 years. (I passed them at home-not something I'd recommend...) I was so tired that everything was a chore. The kidney stones gave me UTI's (I learned after the first one to take Uristat (pyridium -urinary tract numbing agent) and Cranberry capsules which kept the infections from starting.) I had "brain fog" and became forgetful and had difficulty maintaining my concentration on anything. Also, my bowels were becoming increasingly slow and I was getting frequent gut cramps and bloating. (Once at work, I thought I was getting the intestinal bug that had been going around as I had a bout of diarrhea. -I took a single dose of Immodium. -I didn't go for 10 days! -Not recommended either...I was getting heart pounding episodes as well....I went to the Dr again (this time a substitute Dr as mine was on vacation.) She ran some tests and said,"What's being done about your high calcium level?" Hmm, first I'd heard of it....I got copies of all my labs from my yearly physicals -and there it was -for four years! Incredible. A week later I had the "big one" -a 6mm kidney stone that got stuck and put me in the hospital for 4 days.
After I got home, I began to educate myself by learning what the labs meant and sorting out my symptoms. After I freaked myself out briefly thinking I had some sort of cancer, I found the parathyroid.com site. I returned to my Dr and had a Mexican Stand-off in her office as she was refusing to test my PTH level. -she wanted to dink around with every other test first (let's just wait and see") but, I had my way, and the PTH came back at 165! (Calcium was 11.1 I think...) She sputtered,"But nobody I've ever tested has came back positive for high PTH". My mental response (and I WAS a bit mental by this point!) was,"And the sun DOES shine on a dog's butt every now and then sister!) Puh. :<
Long story short, I had a parathyroid tumor -had it out, felt better for some time but still had some pesky low energy/weight/hormonal issues. Recently I found out I have Hashimotos (Until 3 weeks ago, nobody tested for thyroid antibodies! GAWD! Lord save me from being the medical PRACTICE for Drs!) Anyhow, things seem to be looking up now...I can only hope it goes better for you...((((((HUGZ))))))~MM

649848 tn?1534637300
COMMUNITY LEADER
I'm not real familiar with PGA-1, but from my reading, in order to be diagnosed with PGA, all except PGA-III, one *must* have have been diagnosed with Addison's Disease, which is associated with adrenal insufficiency.

PGA-1 presents in childhood. It most often consists of mucocutaneous candidiasis, hypoparathyroidism, and primary adrenal insufficiency (presenting in that order).

PGA-II and PGA-III are commonly linked to Hashimoto's, pernicious anemia, type I diabetes, hypogonadism, and others.

PGA-II most often occurs in adulthood, usually in the 30's or 40's. Middle-aged women have shown an increased prevalence of PGA-II.

Type III, though not defined well, is the co-occurrence of autoimmune thyroid disease with 2 other autoimmune disorders, including diabetes mellitus type 1, pernicious anemia, or a nonendocrine, organ-specific autoimmune disorder in the absence of Addison disease.

Type II is the most common, and is characterized by the *obligatory occurrence* of autoimmune Addison's disease in combination with thyroid autoimmune diseases and/or type 1 diabetes mellitus (also known as insulin-dependent diabetes mellitus, or IDDM). Primary hypogonadism, myasthenia gravis, and celiac disease also are commonly observed in this syndrome.

For more information, check out the website below:
http://emedicine.medscape.com/article/124287-overview
Avatar universal
I'm convinced you have hyperparathyroidism which means there is a tumor (almost always benign) growing on one of your four parathyroid glands, causing kidney stones. NOTE: Parathyroid glands are DIFFERENT from the thyroid gland, they are NOT the same. Most doctors test for thyroid function, but fail to test for parathyroid function, even though a simple blood test is all that is needed. Confirm it with a blood test for two things: 1) PTH (parathyroid hormone) and 2) calcium. If both are high, you need a simple surgery, it CURES it, not just treats it. You see, if calcium levels are high, your parathyroid should be low. If not, you have a tumor on your parathyroid gland. NOTE: With me, this also caused a Vitamin D deficiency because my body was trying to stop the calcium at the same time the tumor was saying it needed more.

Although I don't live in Florida, I went to the Parathyroid Unit in Tampa General Hospital and had Dr. Jim Norman do the procedure because they are the world's experts. They have a probe that can instantly identify which parathyroid gland is affected, so the others aren't damaged in unnecessary biopsies, which is important because you don't want to end up with hypoparathyroidism when trying to cure hyperparathyroidism. Most hospitals don't have that probe, because they cost $50,000. (Keep in mind that parathyroid glands are the size of a grain of rice. For me, it was worth the cost of an airline ticket because the surgeon in my state wanted to cut my neck open and dig around to find it. They also wasted my money on an unnecessary MRI which didn't show anything, while Tampa General Hospital is so used to treating parathyroid disease, knew to use a Sestamibi Scan which clearly identified where the tumorous parathyroid gland was with no problem. (You see, they can be located anywhere in your neck, so if you want it done in a 15 minute to half-hour out-patient procedure, the surgeon needs to know where to cut so a tiny incision is all that is needed to get to the parathyroid gland, and remove it.

I was one of the worst cases they had ever encountered because they said my slow-growing tumor had been a problem for decades and symptoms kept accumulating until they climaxed to crisis situations, according to the amount of hormone the malfunctioning parathyroid gland was producing, and I felt INSTANTLY a little better after the surgery, although it took about 6 to 8 weeks before I felt REALLY good. Tampa General Hospital helped me with hotel accomodations and arranging transport to and from the hospital for my outpatient surgery. I spent the night in the hotel and flew home the next day. I was so bad prior to surgery that on the flight in, I had to lay down on the floor of the airport upon arrival for a time; also in the cab going to the hospital. But I was able to sit up in the cab post surgery on the way to the hotel.

Like you, I suffered from frequent kidney stones with several too big to pass and having to be retrieved or blasted, but as the calcium increased in me, other symptoms, too... it's different for everybody, depending upon where the calcium deposits land. For me, pain fro a bulged disc intensified to an extreme due to calcium depositing on the nerves. Others might have migraines or break a bone or even emotional problems from the surging hormones. I'm convinced people in nursing homes for multiple conditions might have an underlying parathyroid problem which can be cured with outpatient surgery. With hyperparathyroidism, your body is sent wrong signals that it urgently needs calcium, so in desperation, your body starts eating your own bones and since the harvested calcium is not really needed, it builds up in your blood and eventually gets deposited all over, often forming kidney stones. Like it sounds, you also end up getting osteopenia and eventually osteoporosis as a side-effect if the tumor is not removed.

I could be wrong, but I doubt it. Get a simple bloodtest for PTH and calcium today. I had to beg my doctor to do it after plugging my symptoms into the internet and coming up with parathyroid disease. Most doctors are unfamiliar with it unless they've recently been through medical school. But, we should have known how important parathyroid glands are since God gave us four, and we only need one functioning one to survive. I fired my family doctor due to always testing my thyroid, but never bothering to test my parathyroid glands and giving me such a hassle over getting the right tests done when I requested them and after my suspicions were confirmed, for discouraging me from going to Florida hospital instead of using his surgeon buddy at the local hospital. I followed my gut and fought for the best treatment and am so glad I did it. We have to be assertive patients nowadays if our doctor's are old-school with God complexes who don't trust anything on the internet. May God bless you.
Avatar universal
This is a very old thread, so I doubt the originator will see your reply.  However, it's great that you took the time to give us that info.  Now your very valuable experience will be available for anyone who searches for info on hyperparathyroidism.  As a matter of interest, a friend of mine went through a parallel experience and had a great result as well.

Thanks very much.
Avatar universal
I have been suffering from hyperpatahyroidism at least since 2011. A good Endo recently confirmed that I really have primary HPT. My own Endo thougth that I have secondary HPT and recommended me much vitamin D. He did not trust parathyroid.com pages. He says that my symptoms are not due to hyperparathyroidism.

I do not fulfil the criteria for parathyroidectomy, I have too low ionized Ca (in last labs 1.37, should be over 1.5; normal below 1.3), I have no kidney stones, I am too old (over 65 years), I have no osteoporosis etc..

Today laboratory samples were taken to decide whether I have diabetes insipidus: serum and urine osmolality, S Na+ and copeptin, which is a marker of ADH. On next week S aldosterone, renin, Na+, K+ anf Mg++ will be measured (to find possible hyperladosteronism; I often have hypernatremia). I think that my kidneys cannot concentrate urine because HPT causes them not to react to ADH. They waste water, and my serum becomes concentrated.

I have problems with my ears. I am afraid that hypercalcemia could change the ionic compositon of the endolymph in my vestibular apparatus. I have begun to have vertigo, shaking and sometimes tinnitus. Otosclerosis has also been sometimes suggested.

I am often very hot with red face and sometimes with slight fever.
Avatar universal
You have all of the symptoms of your parathyroid having tumors. My sister-in-law had a couple of calcium kidney stones and I told her to ask her Dr. To check her Parathyroid. Sure enough there was a growth the they were able to remove and no more Kidney stones.
        I had a stroke and the cause was a defect in my heart. So I underwent open heart surgery. Just before my surgery my Dr. Felt that with some of my symptoms had nothing to do with my heart problem, so he went testing. He found that my renal arteries had a disease, Fibro muscular dysphasia, and it looked as though I had Thyroid cancer. 6 months after my Open Heart, they removed my thyroid. When they did the surgery to remove my thyroid, they clipped my parathyroid. So I was taught all about the parathyroid and the possible problems that could come from tumors. So when my sister-in-law got her stones, that is the first place they checked.
649848 tn?1534637300
COMMUNITY LEADER
This is a very old thread and the original poster hasn't been active on the forum for several years, so I doubt you will get a response.  Thank you for the information; it may be helpful to others.
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649848 tn?1534637300
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