Thyroid Q and A or Running Hot and Cold

Welcome and please say Hi (Read 919 times)

    Hi - glad you found this space Smile Since joining RA, I've come across several members who were experiencing ups and downs with their thyroid treatment. I had many of my own problems, and while I was able to share some of my frustration on other forums, I thought it would be nice to have a place where thyroid talk is not OT. Please take the time to introduce yourself and please let me know if you would like this space to be a public or private group. Cheryl MTA: feel free to contact me at tyroxin@gmail.com

    Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




    Go With The Flow
    Thyroid Support Group

      I started my thyroid journey almost 3 years ago, but likely my thyroid started going a little haywire 10 years ago. My problem was multiple hemmorhagic cysts. Eventually my thyroid enlarged to the point that it interferred with swallowing and turned out that it was causing hoarseness from the pressure that it was putting on my laryngeal nerves. Making the decision to have my thyroid removed was particulary difficult as it was still functioning normally. It was the right decision. The ENT who did my surgery said the my gland was much worse than he thought. Recouping from the surgery was the least of my problems. It has taken 10 months to get my Synthroid doses optimized. I had reached a point that I didn't believe that I would ever be the same again. I am. Patience was incredibly hard - OK - I wasn't patient Big grin, and I did have a couple of melt downs - but I made it through and so can you. My journey included many, many blood tests, ultrasounds, 4 fine needle biopsies, 2 nuclear medicine scans, and total thyroidectomy. I have had experiences with both Synthroid and Cytomel. I have done much research as well. If you are just starting out, I would be happy to help you out or try to point you in a direction to research information you may be looking for.

      Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




      Go With The Flow
      Thyroid Support Group

        Eventually my thyroid enlarged to the point that it interferred with swallowing and turned out that it was causing hoarseness from the pressure that it was putting on my laryngeal nerves.
        Hey! Congrats on your new forum! You already know I think it's GREAT idea!! And I learn something new from you all the time Cheryl! Hoarsness- I never connected the two. If I talk for any amount of time, I get that way. Has this problem disappeared for you now? Were you able to tell from just feeling from the outside that your thyroid was enlarged that much when you were having the problem?
          Hi Joanie - the problem did resolve after surgery - but that was never a given. Having an enlarged gland will not necessarily cause hoarseness. For me, hoarseness was all the time, but more distressing was the loss of my singing voice. It can also be caused by sinus, allergies, and acid reflux among other things. Unfortunately, to rule out some of these things at times can involve an ENT, as well as a GI doc. This is an article explaining GERD (gastroesophageal reflux disease) and LPR(laryngopharngeal reflux) Gerd and LPR Glad to see you Smile

          Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




          Go With The Flow
          Thyroid Support Group

            Hi Joanie - the problem did resolve after surgery. This is an article explaining GERD (gastroesophageal reflux disease) and LPR(laryngopharngeal reflux) Glad to see you Smile
            Glad to hear the hoarseness is gone! I just got off the phone talking to a friend for about an hour and it was ridiculous- clearing my throat constantly! I've always thought mine to be because of allergies; very interesting article. Thank you!! Smile
              Cheryl, I'm glad you started this group. You have been a huge source of knowledge for me so far, so it's great that you can share it with others now. My story: When I was 20, all of a sudden I started being really tired all the time but not sleeping, was really sluggish, gaining weight like crazy despite working out, hair was falling out in clumps, and was extremely emotional and depressed. Basically I felt like I was a fraction of the person I used to be, but had no idea why. I am lucky in the fact that my PCP ordered a thyroid test within 2 months of the onset of my symptoms and found me to be hypothyroid. I went on Levoxyl and again was lucky that my initial dose was the right amount to put me back into a "normal" TSH range. When I first started taking it, I felt better, but it made me into a huge insomniac- it took 3+ hours to fall asleep and then I would sleep about 2-3 hours, lay awake for another 3 hours, then finally grab one last hour of groggy sleep before I had to get up. It took about 3 months on the drug before I could sleep through the night. I felt pretty good for about 2 years like this, then some of the sluggishness and depression came back as well as weight gain. I was still testing in "normal" TSH values but my PCP wanted me to see a specialist. This is when things started to get ugly. The specialist I saw told me that obviously something was wrong with me mentally because my TSH was still normal. I had crazy mood swings, was still gaining weight despite diet and excercise, and was completely unmotivated to do anything. I asked her to test for free T3 and free T4 levels and she refused. She switched me onto Synthroid (same dose) and when I got tested again 7 months later my TSH was suddenly in the severe hyper levels, but I still had all of my hypo symptoms. Finally, I decided not to deal with her anymore and went to a different doctor, who put me back on Levoxyl. Unfortunately, I had to wait 2 months before any new bloodwork for Levoxyl to get back into my system and do it's thing, so I just had the blood drawn last week. I am seeing the doctor next week to discuss the results (he ordered a full thyroid and metabolic panel along with other stuff), so I will be back with an update on that later on. I have actually been feeling a bit more like myself the past few weeks, so that's a positive change. Smile Whew- that's my story! I don't care if this is a public or private group, so if it's helpful to a lot of people as a public group, that's fine with me. If stuff starts to get really personal, we can make it private. Oh yeah, and a bunch of keys on my keyboard stick badly, so I apologize in advance for any typos Smile
                Shaunna - thanks - and glad to hear you are feeling better. That is fantastic news that you got a complete thyroid panel done!!!! Oddly enough, sometimes it is very difficult to tell if you are hypo or hyper. You can have hair loss, weight gain or loss, fatigue with both. Heart rate is usually a good indicator, but how good it is seems to depend a lot on the individual's response to thyroxine and the degree "off" you are - some people are more sensitive to it than others. Looking back at my Cytomel reaction - I was actually hyper - even though I thought I was still hypo. My symptoms were mostly fatigue - but I lost a lot of muscle strength in a relatively short time - measured by drastic reductions in the amount of weights I was using during my strength training. Hyper can accelerate muscle breakdown. When I was hypo - I never gained weight - because I lost my appetite. Plenty of appetite now Roll eyes Big grin I would like to make the group private at some point - some stuff is pretty personal. I just thought it would be easier for people to find us if it was public for a little bit. You just let me know when you want to change status.

                Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                Go With The Flow
                Thyroid Support Group

                  Shaunna - could you please put a copy of your story in the story thread? I like that we have it in both places - makes it easy to browse when you are trying to compare symtoms. It's better if you do it - so you can have control over any modifying you might want to do thanks Smile Oh and if either of you have any suggestions for organizing threads - let me know - I'm new at this forum stuff.

                  Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                  Go With The Flow
                  Thyroid Support Group


                  Burninated Peasant

                    Figured I'd join, since I'm on hypothyroidism medication, but never noticed any symptoms before the doc saw my test results. I'm hoping that by reading others' experiences, I might be able to notice a little better if the medication isn't doing what it is supposed to be doing. Without an extra blood draw, that is.
                      Figured I'd join, since I'm on hypothyroidism medication, but never noticed any symptoms before the doc saw my test results. I'm hoping that by reading others' experiences, I might be able to notice a little better if the medication isn't doing what it is supposed to be doing. Without an extra blood draw, that is.
                      Welcome and thanks for saying hi Smile Did he tell you why your thyroid function was low? Once you found out, were you able to relate it to a change that you had been feeling, or was it just a complete surprise to you?

                      Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                      Go With The Flow
                      Thyroid Support Group

                        What a great idea for a group. I was diagnosed with hypothyroidism at 16 after years of being way too tired, cold, clammy, and feeling just plain lathergic all the time. It took a while for the doses to get right, started on Synthroid which worked well but my insurance changed my med to Levoxyll, since it's the generic. It's been OK, recently had to have it upped though. I was having severe bowel issues, night sweats (soaking) and anxiety. It only took two months to convince my Dr. to check my levels. Now I'm pregnant and trying to find info on how I should be monitoring my levels as I know it can have some major effects on the pregnancy and my little growing bean.
                          Hi Emilee, Welcome Smile I started a response to your med question in the med thread. How many weeks are you now? Happy news Smile Do you have a copy of your labs? How did they compare to when you were on Synthroid? Do you know why you are hypothyroid? thanks for taking the time to say hi

                          Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                          Go With The Flow
                          Thyroid Support Group

                            Hi everyone! I'm new to RA and found this group, so I thought I'd say hi. I was diagnosed with hypothyroidism in January 2007 after over a year of monitoring and hearing my doctor say my thyroid is "a little low, but still normal". I'd been tested a few times in the three years before that, but always heard that I probably had a low thyroid period. In January, I had a TSH through the roof and thyroid peroxidase antibodies around 1900 (normal is below 30). They finally started treatment with Synthroid then. I've had my dose change 3 times now. I'm currently on 75 micrograms and have been for about 3 weeks. I went in because I felt like something was wrong (again) and got harassed by the nurse because it wasn't time to get my levels rechecked. Turns out I was right. I'm still feeling really tired after the dose change and my weight is up again. It's a frustrating situation. Every time I feel like I'm stable, my thyroid drops again and then I have to go through the roller coaster of symptoms. I know it will be better eventually, but it's frustrating in the meantime. -Jen
                              Hi Jen - welcome and glad you joined us Smile It is a frustrating and slow jpurney to get optimized - especially since you are having to deal with antibodies too. Hugs and hang in there.

                              Life is not measured by the number of breaths we take, but by the number of moments that take our breath away...(unkown)




                              Go With The Flow
                              Thyroid Support Group


                              straw man

                                Hi, I'm a type 1 diabetic, and was in to see my endocrinologist for a checkup last month when she told me that my thyroid levels were normal but I tested positive for Hashimoto's disease antibodies. My wife has Hashimoto's and is on Synthroid, so I had heard of it. But when my endo asked if I knew what it meant, I had to say no. I still don't know much. Anyway, I was just talking with my doctor when she suddenly reached out and grabbed my throat, then insisted on doing a sonagram on my thyroid. Then she scheduled me for a biopsy on my thyroid. I have two nodules on my thyroid, ten and 15 cm, that are "consistent with Hashimoto's thyroiditis." My "thyroid levels" are low normal, but I'm told that I will eventually need therapy for hypothyroidism. So when I saw this group, I thought I should join. Thanks for being here. I'll let you know when I have some questions. Jerry

                                He who has the best time wins. Jerry