No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts


    Hi everyone,
    It's been a couple years since posted with a new question. My IC feels like it's calmed down, i almost feel normal when i take care of myself which is good b/c i'm 22 and i have alot of time for it to get worse. I'm off my Elmiron due to it's side effects (lethargy, and then the hair loss didn't help)

    But the hair loss promted my new GYN to test my thyroid and the results reveal that my thyroid is barely if at all working!
    And i don't know how long it's been this way and i'm surprised my URO never thought to test it b/c when i used to comoe here all the time i'd hear alot about thyroids but i never thought it applied to me.

    Does anyone have this, i'm curious as to what to expect treatment wise and if my symptoms will go away.
    I have dry eyes really bad at night,
    always anxious and moody but always have been
    i'm still thin, no weight gain so far
    hair loss
    anyone know if this relates to IC or if you have this?
    just thought i'd ask,
    hope everyone is doing well!!

  • #2
    NB - If you go to the "Related Conditions" board and browse through past topics you will find much discussion of thyroid disorders and people here who do have thyroid problems. You should be able to click to bring up topics for the past year.

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


    • #3
      Dear NB,
      I also have a severe case of Hypothyroidism (low thyroid disease) I was Hypothyroid since I was a real small child, and I didn't get diagnosed correctly until I was nearly 40. My early symptoms were sensitivity to cold, carpal tunnel syndrome, low energy, constipation, lack of cordination, and bladder frequency.

      As time went on, my bladder became very severe and I went to countless urologists and other Drs. Ins search of help. Some very top urologists even told me that I had IC and had an end stage bladder. Fortunately, I found out that I was severely Hypothyroid and began treatment.

      My current Drs. tell me that I suffer from a Hypothyroid neuropathy. (thats nerve damage) They tell me that it is throughout my entire body. This means that many of the symptoms that I suffer with, are to my autonomic nerves and to my distal nerves sensory nerves. The autonomic nerves control bladder, bowels, lungs heart, glands and we normally don't have to think about them they just work for us. The other nerves are mostly distal sensory neuropathy and they do cause me severe painful sensations.
      An example of autonomic nerve damage is severe constipation that is not relieved with added fiber and water. This causes trouble like IBS with gas, hemmoroids, and straining of bowels.

      This is pretty complicated stuff, but found this that might explain it better. I will quote it:

      "The pathophysiology surrounding hypothyroid neuropathy remains unexplained. In people with hypothyroidism a mild peripheral neuropathy is relatively common and may include facial mononeuropathy, sensorineural hearing loss, distal sensory neuropathy, and sensorimotor polyneuropathy. One study reported changes in nerves consistent with a dying back process and possible underlying slow axonal transport. There may be preferentual loss of larger caliber myelinated fibers. Carpal tunnel syndrome (median nerve mononeuropathy at the wrist) the most common mononeuropathy encountered. As we have seen in dogs, the relative proportions of axonal degeneration (seconday to disturbance of neuronal metabolism?) and demyelination (primary Schwann cell involvement?) varies from case to case. Onion bulb formations are infrequently found. Ultrastructural changes in affected human nerves include prominent cluster formations and excessive glycogen deposition in Schwann cells, myelinated and unmyelinated axons, endothelial cells, and perineurial cells." This paragraph I found in my daughters Veterinary books. Now I need to find the someone out there who knows how to heal the nerves...Hmmmm,... I wonder if our favorite veterinarian bunny Dr. Buffington can give us information about this. Just thought this is so interesting yet little research is being done about Hypothyroid Neuropathies.

      Please make sure that your good Dr. does more than the TSH test, You should also have the Free T4 and Free T3 and remember that many have normal thyroid levels, yet have all of the symptoms.

      Some Drs. take great consideration in the symptoms, and some will treat with thyroid hormone just see if the hormone helps. I feel the best on 3 1/2 grains of Armour thyroid and the dose is individual for all patients. Armour thyroid has both the T3 and T4. The T3 hormone is biologically ready for your body cells to use immediately. It is several times stronger than the T4. Check out the Armour thyroid site! People on T3 sometimes feel its effects within minutes after taking it. Check this out:

      There are as many as 20 million sufferers in the US - and 13 million of them are undiagnosed. Women are seven times more likely than men to develop thyroid problems, with a one in five lifetime chance of developing a thyroid problem. For both men and women, the risk of thyroid disease increases with age.

      Hey, about your symptoms when treated correctly with the right amount of thyroid hormone your dry eyes will improve, your anxiety and depression will improve, and perhaps the bladder IC symptoms will improve. Many children with Hypothyroidism are thin due to poor apetite. Many older hypothyroid people are a little overweight due to lack of energy and are often tired and depressed.

      Symptoms of Hypothyroidism are many and vary but often include:

      Fatique, trouble awakening in the morning, daytime sleepiness

      Feeling cold when other people do not

      Drier skin and hair; hair loss

      Muscle Cramps

      New or worsening memory lapses


      High cholesterol level

      Puffy face

      weight gain

      Heavy menstrual bleeding

      Carpal tunnel syndrome with pains and numbness particularly at night

      This list is much longer and many could add more to this list. eek
      I once saw a list of nearly 200 symptoms!

      for more information see
      and check out Dr. Barry Peatfield's book


      Best Wishes, and just ask if you need further information on Hypothyroidism.

      Hugs Silverfox (premature grey hair is another Hypothyroid symptom!) wink


      • #4
        Hey NB! Good to hear from you!!

        Im GLAD you have a smart GP!!

        Im also glad I have a smart GP now too. I was tested this year.....and I was started on thyroid medication about 9 months ago.

        I cant believe yours is barely working!! Do you know what your numbers were?? For me, my numbers were just very boarderline, but I was SOO symptomatic, I began on a very low dose of the medication. I am only I was scared to do so....but even though I was boarderline, I was feeling the symptoms.

        Kim is right....we have had a LOT of discussion on this lately!! Because I just worked a really long tiring shift, lmao I dont feel like typing it all over again.;t=000744

        There was also a really good thread under the PT catagory....I wanted to add it because it has a lot of good information. The sciatica pains or physical therapy type problems may or may not pertain to you, but there is still a lot of great information on this thread.;f=19;t=000262

        I know deciding weather to do thyroid medication is a scary seems like a permanant decision....and it seems like it can change everything. And as with ANY treatment that involves hormones, it WILL change a lot of things. For me, most of these changes were positive changes. I had the weight gain, high cholesterol, dry skin, the hair loss, muscle aches, very very slow metabolism, fatigue and horrible constipation. There are also other conditions that can mimic thyroid conditions. You have to consider your lab reports, this is true, but also consider how you feel, and if you have been feeling good, you may want to hold off awhile. If you have any more questions, feel free to contact me!!

        Also...just wanted to double check...make sure your doctor is talking about hypOthyroidism. If you can easily keep weight off (or if you have lost weight recently) and if you have a lot of anxiety, you may have hypERthyroidism. Because there are so many different thyroid hormones, by you saying your numbers were way off, that could go either way.

        For me, a lot of my problems (mostly the pain and constipation and the weight gain) have gotten better. Im still experiancing the hair loss thing, and I truely believe that is a symptom of IC.....My doctor and I are going to check into cortisol as a cause for that. There is more info in the threads I gave you.

        Hope this helps. Again, feel free to email me [email protected] Glad to hear youve been doing well!
        @[email protected]
        "Well the Secret O'Life is enjoying the passage of time." ~James Taylor


        • #5
          I take 2 grains of armour a day. I had all the symptoms with hair loss and fatigue being the worst. My tests were fairly normal but my doc started me on the armour anyway. I feel much better, that was almost a year ago. I don't know if it's related to the bladder problems or not. I still occasionally have symptoms while taking it so I don't know about that. God Bless!



          • #6
            thank you so much Kim, Silverfox, Rachel, and Success.
            I've looked on websites but they all say the same thing such as it being caused by lesions or tumors on the thyroid, or Hashimotos Disease or a couple of other things. And it lists the symtpoms so you girls helped me alot.

            I do have my lab results, the T4 is in normal ranges but my TSH is 13.568 and the normal range is .3-5 so it is definately HYPOthyroidism.

            I'm just a little anxious about the meds b/c i'm starting my second semester of Nursing school where i'll be in clinicals and i can't afford to have wacky things going on. The first semester was hell but i managed with a 3.7 average and i said to myself right after that was over how i don't know if my body can take that on again. So you can imagine why i'm worried.

            But i'm hoping too that the meds will make me feel better. I just never really feel that great, especially mood wise.

            Now i'm rambling, thanks again so much and it was good to hear from all of you!!! bunny


            • #7
              Hello NB

              I just read your posts, and would like to add that I have been taking Synthroid since 1990. .125 per day up until November of 2003, and then reduced to .112 per day...probably due to my aging body...ugh....
              To have to live with hypothyroidism is not a good thing. My TSH level was 28 before I started on replacement therapy. You will not believe the change in yourself once the dose is at the proper level....WOW
              No more constipation--some days I thought I would never go again in my life.
              No more fuzzy brain feeling. I remember going to Silence of the Lambs and telling my husband that I was sorry, but I just didn't understand the movie...I felt really "Mentally challenged" until my doseage was correct.
              I was so crabby and crying all the time and nothing seemed to be right UNTIL I started thyroid therapy. Puffy and water retention! Slow many things went away!
              So, if your thyroid is not working, you have to take the replacements for the rest of your life because you certainly won't want to go back to living with an underactive thyroid gland....
              Also the unchecked low thyroid will raise havoc with many other parts of your alas, I have Reynaud's phenomenon, arthritis, low body temp and now to top it off IC. WOW for us, eh?

              You will feel lots better in 3-6 weeks. Good luck!



              • #8
                Hi PPP,

                Wow, i'm so glad that the meds worked! That's great!! And thanks for reassuring me.

                I don't have constipation problems though. I know i'm ALWAYS cold, have severely dry eyes at night, hair falling out more often, and i'm axious. I would love to get rid of those symptoms. I'll go to the DR tomorrow, i'll fill you in!
                take care!! grouphug


                • #9
                  PPP.....funny you mention.

                  I had the "fuzzy head" thing going on too. Didnt realize that TOO was related to the thyroid!! It has deffinatly cleared up for me with my Armour thyroid. And I am only on fifty micrograms.

                  NB~ just for the record. I KNOW that when you go onto all those Hypothyroidism websites, they list the lesions, the tumors, and Hashimotos. I want to just let you know for the record that I have NONE of these. Like I said, my labs were boarderline low. TSH was perfect at 1.4, but my FREE t4 was low at .8 (low range normal) and FREE t4 is more important to know than TOTAL t4, because FREE t4 is what is available for the body to use. While those conditions on all those thyroid websites are the only DOCUMENTED thyroid conditions, there are other "subclinical hypothyroidism" conditions that are not so black and white. (Thats my diagnosis ~ subclinical hypothyroidism.)

                  As far as YOUR condition, I think I understand whats going on. With thyroid hormones, what happens is called a Negative inhibition cycle. I will try to explain.

                  Your thyroid gland itself makes t3, which is the metabolically active thyroid hormone, and t4, which converts to t3. When the levels of t3 OR t4 in the body get too low, the pituitary gland senses this, and creates MORE TSH to try and stimulate the thyroid gland to make MORE t3/t4. In Hypothyroidism, the gland usually can NOT produce more t3/t4, and the TSH goes sky high, and the patient feels symptomatic.

                  I think what is happening in your case is YES, you DO have hypothyroidism, BUT, your body is compensating well. Since your t3/t4 are normal, and you are NOT symptomatic, I think trying the medication at this time might make you have hypERthyroid symptoms...tachycardia (high heart rate) nervousness, anxiety, weight loss, diahrhea....... and those things arent good either. (PS.... Anxiety is not really a hypothyroid related thing, as too much t3/t4 or hyperhtyroidism cause anxiety.....depression is more of a hypothyroid thing)

                  Although I let my primary care MD manage my thyroid, and I usually do NOT reccomend endocrinologists, as they do not recognize "subclinical hypothyroidism" as a diagnosis, I think in your case a Endocrinologist evaluation would be good. My fear in starting thyroid replacement hormone too early is that eventually your thyroid will burn out, and you could end up having a myxedema coma, which is when your thyroid burns out all at once (and you are already on thyroid medications) and you end up being terribly hyPERthyroid for a few days. This feels HORRIBLE, and can be life threatening. Julie B had this happen to her......not fun.

                  As a recent grad of ALL types of nursing schools wink , I think the anxiety might be school related. I know mine was!! The hair falling out started for me in nursing school too.....although some was hormone related, I think some was also stress induced (telogen effulvium).....I have been out six months and I have tiny fine feathery new growth....yay! As a side note, heavy metal toxicity and certain medications (elmiron) can also cause hair loss.

                  I wish you the best of luck in deciding what to do. I suggest if you dont go to endocrine, ask your primary care MD what they think about your body compensating and about myxedema coma. Your thyroid IS sluggish, but for now, its compensating very well.

                  Please let us know how you do. Congrats on your GPA!! YOu tottttttallly deserve it!!
                  BIG hugs,
                  Rachel (CRNP)
                  @[email protected]
                  "Well the Secret O'Life is enjoying the passage of time." ~James Taylor


                  • #10
                    I also wanted to say....

                    Have you had ANA titers? (Antinuclear antibodies?) Also, when it comes to careful about websites. You probably have some kick butt textbooks at your disposal wink
                    Hugs again,
                    @[email protected]
                    "Well the Secret O'Life is enjoying the passage of time." ~James Taylor


                    • #11
                      re: ANA titers

                      I have had IC for 9 years (really a lifetime), suffered my first flare in 9 years, fibro, IBS, etc.

                      Anyway, they keep testing my thyroid and saying it is ok, but my ANA is rising - up to 640!

                      Does anyone else relate to this?


                      • #12
                        Thanks for the advice! grouphug
                        But i think you misunderstood or i forgot to mention that i AM symptomatic. Even before i started RN school, months before.
                        My hair fell out, my eyes are terribly dry at night, my joints ache, i'm tired alot, my periods have always been loooong and heavy until i got on the pill. So aside from the anxiety, there's that whole other slew of physical symptoms that won't go away. My T4 is normal, but my TSH is 14 and it's supposed to be .3-5 so taking that into consideration along with my symptoms, i feel i should get on medication. My DR prescribes synthroid 50 mcg.
                        BUt yes, that does make perfect sense about when you said if i was asymptomatic then maybe it would be better to wait but i've had these symptoms for 11 months and i've tried vitamins (i thought i might have had a nurtitional deficiency) and i don't take elmiron anymore. So i think i need to be on medication as well.

                        But thank you for all that information, i really appreciate it. Even in all those RN books, it really doesn't talk much about hypo. OR IC!!!! cussing But maybe soon they will know more
                        Thanks so much


                        • #13
                          ....and i forgot to mention too that i'm always freezing!!!
                          I forgot to ask, how long did it take you to feel better? My DR said two-three weeks. I'm starting the 50mcg of synthroid tomorrow.


                          • #14
                            Hi NB,

                            The shorter the time that you have been hypothyroid, the sooner you will feel better. You should start to feel warmer in a few weeks and you and those around you might start to notice that you have more energy. I was hypothroid for more than 30 years and so my recovery was not as quick.

                            You are young, so you should do very well and you will start to feel better in weeks and more complete in a few months.

                            NB if you do not feel that the Synthroid is working after a few months, don't forget to ask your Dr. if you can try some Armour thyroid.

                            When I tried Synthroid for several months I actually began to become Hypothyroid feeling colder and tired. My Dr. put me back on Armour thyroid and increased it a small amount. He told me that 3 grains is about the amount that the thyroid gland produces in a day. Each person is different so most have to experiment with dose.

                            I hope that you do really well, and please let us know how it's going.

                            All of the states in the USA now have a thyroid support group, patient run and patients helping each other find a good Dr. The state of Michigan now has thyroid support group meetings for patients and a thousand members. grouphug

                            Please join your state thyroid support group. You can make a difference. Nurses who understand thyroid diseases would be wonderful. You can make new friends and help someone find help.

                            Here are 2 sites, please check them out:





                            • #15
                              Hi Mamma Kay,

                              Many do not know this, but the usual thyroid tests for some may be next to useless. I had low-normal thyroid test results. You may wish to talk to your Dr. about all your symptoms. I had so many Hypothyroid symptoms, and most of them are gone now.

                              About the ANA titers, before I found out that I was Hypothyroid, they did my ANA tests and they were very high. They didn't know why. Months later after I was put on Armour thyroid hormone at 2 grains, they did my ANA test again and the results were way down. They did not know why.

                              I cannot tell you what it means for you, please ask your Dr. When they first did ANA titers they were thinking that I may have lupus or MS. They also did a spinal tap and my protein level was very high and this is often seen in Hypothyroidism. Do not ask for a spinal tap, because that is not necessary. Your regular family GP can help you.

                              treatment for Hypothyroidism is inexpensive and easy if you are suspected with hypothyroidism.
                              Sincerely Silver

                              PS. JANUARY IS THYROID AWARENESS MONTH!