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  • WWWI2
      Post count: 137

      I have been noticing over the last several months an increase in the amount of hair I’m losing. I was diagnosed with Graves’ in August 2012. Was started on methimazol. Went Hypo in November and as of about 3 weeks ago am within normal ranges.

      When I was diagnosed with Graves’ I had already noticed a difference in the texture of my hair, but hadn’t noticed increased hair loss. When I went Hypo I noticed the texture changing again and an increase in hair loss.

      When I approached my Endo, he stated that he did not believe the hair loss was related to either Hyper or Hypo or the meds I’m taking for the thyroid (methimazol, levothyroxine and atenelol). He stated that only if my TSH levels were exceedingly high (50+) would hair loss be involved, mine never surpassed 10. He was pretty adamant about this.

      He is checking my thyroid levels, vitamen levels other hormones, electrolytes (?). He is also suggesting I see a dermatologists for a possible scalp biopsy to determine the cause.

      He suggested that when something is wrong with someone they have a tendancy to blame all things on that and most likely in my case it’s unrelated to my thyroid. His nurse even went so far as to suggest that I may have suddenly acquired a case of female pattern baldness despite the fact that only a few months ago, I had more hair than I knew what to do with and all of the females in my family are right there with me.

      Is there any documentation or studies out there that anyone knows about regarding the prevelance of hair loss with regards to thyroid issues?

      I know that even with all of these tests, we may never find the cause. He has suggested a prescription of Spiconolactone. It’s a testosterone inhibitor, usually used for those who are transgender. He says there are NO side effects, not few side effects, but NO side effects. Has anyone heard of this drug, taken this drug?

      He could be absolutely right as he seems sure he is, or he’s just increadibly patronizing. Am I being too sensitive? I have been burned badly before and so am not especially trusting. But he seem to want me to simply follow what he’s saying with blind faith. I’m not good with that.

      Any input is grately appreciated!

      WWWI

      Kimberly
      Online Facilitator
        Post count: 4291

        Hello – I’m not aware of any specific studies, but this video from a patient education event the GDATF co-hosted with the Let’s Face It Together Foundation might be of interest:

        (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

        http://www.youtube.com/watch?v=f-416OblbBo

        It’s certainly worth checking out other possible causes…but definitely *don’t* let your medical team be dismissive of your symptoms!

        smtucker
          Post count: 74

          Pshaw! My sister was first diagnosed when she went to the doctor with ONE symptom. Hair loss. When I started on the Methi-Crap my hair started to fall out like crazy. Sorry, I just don’t understand why doctors discount side effects that appear in the literature.

          With Endo#3 this was one of the first assessment questions I was asked. Endo#3 is actually two Endos and they both agreed that this was from the disease.

          *susan*

          Naisly
            Post count: 143

            As per aace hair loss is a hypo symptom — Hyper is fine hair, Hypo is coarse or loss of hair.

            There is quite a bit of literature regarding this.

            AnjinSun
              Post count: 1

              I would say, it’s from Graves…I had hair loss and brittle nails months before even being diagnosed and on meds.

              WWWI2
                Post count: 137

                I also had serious nail issues about 1.5 years ago that I now attribute to Graves’. They have since gone away. My hair changes follow my illness changes pretty closely.

                But it’s his “sureness” and kindly patronizing attitude that make me question myself. HE is supposed to be the expert, not me. I’ve done all kinds of research and yet I feel constantly dismissed and invalidated.

                He’s my 2nd endo since August. I have my concerns that if I do pursue a third, that it’s not going to be any better. And yet, despite that he’s been practicing for many, many years and in some ways seems to know a lot, in others it appears he knows very little.

                But either way, he’s SO sure he knows what’s right for me and yet he comes up with things that go against general knowledge. He told me it didn’t matter when I took the methimazol and levothyroxine during the day and it didn’t matter if I ate food or didn’t. Conventional endo journals do not say that.

                But he also put me on a block and replace regimine that seems to be if not totally cutting edge, still fairly forward.

                Then at this last meeting, when I told him I still didn’t feel well, he told me that if things didn’t right themselves with my symptoms, then it was time to consider alternatives. The alternatives being RAI (which he’s for and I’m not so sure) or TT (which he’s opposed to but I’m not). I responded by saying if we can’t get the meds stable now, what gives me any assurance that they will be stable when my thyroid is gone. He said, well you don’t seem to be in a place to let me “teach” you about this so perhaps we’ll have this conversation at another time.

                I’m scared and angry and confused. I know better than to trust anyone blindly. But to some degree I have to have faith that someone more knowledgable knows what they are doing. I just don’t know what to do!!

                Kimberly
                Online Facilitator
                  Post count: 4291

                  Hello – Obviously, this is a difficult decision to make, but I think it’s really important to have both a *provider* and a *treatment option* that you have confidence in. Certainly your question about getting levels adjusted post-RAI or surgery is a valid one!

                  It might be worth the time and $$ to try and go for endo #3…just to see if you can finally find that one doc that you really connect with.

                  Take care!

                  ChristinaDe
                    Post count: 115

                    www12 ~ I had a very similar experience w/ my endo. Info that contradicted current knowledge regarding thyroid disease & Graves’. Info that contradicted medication information inserts. On & on it went. And when I questioned the discrepancy, I was faced w/ a similar reaction – namely, that I was somehow being difficult or just not getting it or trying to inappropriately blame everything on a thyroid when it had nothing to do with it. Etc. It still makes me angry when I think about it. And it was all couched in a condescending tone.

                    I also had problems w/ feeling better while on medication to lower thyroid levels. When I asked the question you asked (“If you can’t get me to my sweet spot now, how will you do it once my thyroid is radiated or removed?”), I got the same basic response that you did. Made me feel like I was being “difficult” or “psycho”. I’ve since left that endo’s care.

                    I later asked my primary care & thyroid surgeon that same question. Their response? As long as the thyroid is there & sputtering along, it has the potential to wreak havoc on my dosing. Some people do ok if their thyroid produces hormone at a consistent rate. Others, like me, have too many swings from their thyroid & will need more frequent adjustments if they leave the gland active. So let’s say they get me to my sweet spot, but then my thyroid gets crazy active. Then they lower me to compensate for it, and then my thyroid slows a bit. Both said that if the thyroid is completely killed off through radiation, or completely removed, then dosing becomes a little more straight forward. That made a lot of sense to me. Of course, then you don’t have a thyroid anymore either. Choices, choices. Who’s right & who’s wrong? And how does anyone find that magical patient/physician relationship in endocrinology? For now, I’m working w/ my PCP & surgeon. I’ve had much more success & validation since doing that.

                    WWWI2
                      Post count: 137

                      Kimberly – I think I will pursue your suggestions. I had thought that if I went to another endo I had to drop this one, but you are correct, there is nothing wrong with simply getting a 2nd (or rather 3rd) opinion. I can always jump ship later lol. Thanks for the support and suggestion and especially the validation.

                      ChristinaDe – Thank you for that explanation. That makes a lot of sense as to leveling out. I JUST got my levels into the normal range about 3 weeks ago. I was put on Meth in August when I was finally diagnosed, bypassed the normal ranges and went into hypo territory for 3 months. So it would seem to me that I’m awfully early in the normal territory to gauge whether things can stablize or not. And despite the small chance of remission, I’m certainly going to shoot for that. It just felt as if his reasoning for “alternatives” was based on the inconvenience to him since I’ve only been within normal ranges for such a short time.

                      I appreciate knowing that your experience mirrored mine. Not excited that I may be moving on to Endo #3, but that it confirms that I’m not wrong to suspect that this may not be a good fit for me either. And that my concerns are valid ones.

                      If you have a surgeon that would indicate that you went through TT. How was that for you? How are you feeling now? How recently did you go through it? Why did you choose that method? I’ve probably asked you these same questions before, but the cog fog is thick right now lol. I’m leaning towards TT if that’s where this goes so am very interested to know all! How long until you were functional? did you need a lot of support during the early days after your surgery? Inquiring minds want to know :)

                      WWWI

                      ChristinaDe
                        Post count: 115

                        Dear “Inquiring Mind”…:lol:

                        Oh, and I can so remember those foggy days!

                        Yes, I had TT done. February 1st of this year. My original plan was to seek remission with ATDs. My doctor & some of the research that I was reading suggested that remission was unlikely in my case, but I was still going to give it a try. Two things changed my mind. One – despite “stabilizing” with “normal” levels, I required the ATD, a beta blocker, prescription Vit D, and a tranquilizer. While my heart rate & tremor improved, my palpitations, anxiety, and cognitive issues (the fog) worsened. I also became very depressed, which was not a problem for me prior to treatment, to the point of feeling like I couldn’t take it anymore. Apparently this happens to some & not to others. Two – I had a large goiter and 2 large nodules. Although the nodules were non-toxic, they were large enough that they were going to require careful watching & possible surgery later no matter how the rest was going. At that point I was so done with all the doctors, labs, meds, moods, anxiety and fog and I simply felt that I had no quality of life left and was no longer sure that (in my case) waiting out a possibility of remission was in my best interest (even though I wanted that so badly & it seemed to happen for so many others).

                        My TT went very well. No more anxiety or cognitive issues since. No more heart issues since. No more tremors, nausea, or general malaise either. I did have a short bout of low calcium levels which were uncomfortable for a few days since my parathyroid glands had fallen asleep. The only thing I had to do for that was take calcium gummies until they recovered. That worked very well & the parathyroids became fully functional very quickly. I no longer take the calcium or prescription Vit D. I came off the ATD and tranquilizer the day of surgery. And I came off the beta blocker about a week later. Today the only med that I take that I didn’t take before Graves’ is my thyroid hormone.

                        The only other thing I’ve had to deal with is the expected thyroid crash. When they first begin your thyroid hormone, you still have a bit of your own thyroid hormone stored up. Once those stores are used up, it is typical to need an increase in your med dose to compensate. To minimize it, my surgeon started me on my thyroid meds the day after surgery. My crash came late, but it came. It’s not been horrific, just some hypo symptoms that require an increase in thyroid med. (The first dose chosen is just a best guess sort of thing anyway.) So at the 2 month mark I’m increasing my dose for the 1st time & seem to be responding very well. Hopefully this will be the only adjustment. We’ll soon see. I have to say though, that mentally I feel pre-Graves’-ish. Just feeling a bit lethargic with some joint pain from the temporary hypo state.

                        As for post-op support, I needed the typical help that follows any surgery under a general. I really only needed that for the first week or so. The pain was mostly in my throat from the breathing tube, but I did have some tightness and mild hoarseness for a few days. I think I only took the narcotic pain reliever for 2 or 3 days, then nothing. At 4 weeks my scar was flattened out & pale & now I can barely see it. I have to point it out to others for them to see it.

                        So my experience was good. No complaints. But it was tough getting there! I did what you’re doing now. I listened to the good stories, and the bad. I carefully considered all 3 options. And then I chose the one that best suited my values and mental state, and I haven’t looked back. I honestly have seen people who are just as happy with their decision to remain on ATDs for as long as it takes & others who are happy that they went with RAI. I knew that I was at the point that I had to go for definitive treatment. I’d lost hope and the ability to cope with the highs and lows and waiting. I talked to 3 physicians and a therapist to get to my “best” option.

                        By the way, every single one of your concerns is completely valid!!!

                        WWWI2
                          Post count: 137

                          ChristinaDe,

                          Thank you so much for taking the time to respond so thoroughly, honestly and eloquently! You have not only given me hope that this mess can be righted, at least more so than it is now and I feel validated.

                          I was not aware of the “thyroid crash” and I appreciated being able to anticipate that.

                          I hope in the future you would be ok if I picked your brain. And I’m going to ask in advance that you forgive me if I repeat the very same questions at a later date lol.

                          Thank you, again, so much for responding as you did :)

                          WWWI

                          ChristinaDe
                            Post count: 115

                            WWWI,

                            No problem! Glad to help with some validation. I remember when I was first diagnosed and feeling so crappy…I wanted 3 things so badly. First, to be validated instead of being made to feel like a crazy, difficult hypochondriac. Next, I wanted the fog to clear so that I could understand and process everything that was happening. And finally, I wanted information. I wanted to know what was attributable to my new diagnosis and what wasn’t, what worked and what didn’t, what the various options entailed and how it actually felt to go through them, and while I wanted to know what the disease was all about & what to expect with it and its treatment options…I also wanted hope. Not lies, but reality-based, believable hope. It was so hard to find it anywhere, on any site, in the community, or even with my own endo – until I found this forum.

                            So anytime you want to pick a brain, do it! I still do!!! As well as I’m doing, as much as I’ve learned & now understand, as clear as my brain has become, as good and calm as I feel – there are still little tweaks required along the way to optimize things. And I still experience little hiccups. Nothing like before, much smaller things now, but I continue to benefit from others on this site & from the GDTF – always learning new things that I can use to improve upon &/or maintain my new feeling of wellness…everything from beauty & nutrition tips to eye health, to new research, pharmaceutical alerts & news items that pertain to Graves’ & thyroid patients.

                            And keep us posted on how you’re feeling & how endo #3 goes! ;)

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