Post # 1
I have my first endo appointment tomorrow and I’m extremely nervous.
I have been seen by a GP for the past 3 years for my Hashimoto’s and she has put off putting me on medication for all these years. I finally decided this wasn’t right.
Every day I feel like I’m dying. Literally. My anxiety and depression are out of control, I lose about a pound of my hair a day, my stomach always hurts, I am so cold all of the time, I’ve started forgetting words for every day things such as “bread”. I have about 20 other symptoms I’ve written down to hand over. I haven’t felt well for a single day in over 3 years.
My GP never gave me information on my levels, etc. I have had them fax over all of my tests to the endo, but I called today to make sure the endo had them and they said “no”. I requested them again, but can’t guarantee they’ll be there tomorrow for my appointment.
It has taken 7 months for me to get this appointment as a new patient.
Does anyone have any advice as to what I should be stressing to the endo? I won’t be able to take it if she tells me that I’m fine.
We’d like to start TTC in a couple of months and I’ve read up on the importance of getting your levels straight. I’m really really nervous about all of this 🙁
Post # 4
I have this same stupid disease as well. I experienced every symptom you listed, and then some, cycling through thyroid storm on the way to thyroid slow down. It was torture!
I dont’ see an endocrinologist, my GP treats me, but she is unlike any doctor I’ve ever met before. She has put me on Synthroid, and I feel leaps and bounds better than I started out a year ago. We’re still getting my levels to the proper area, but I’m so close!!! Just hang in there, and know that it can take some time to feel energetic again… don’t get discouraged.
I think it’s important for you to stress to this doctor how TERRIBLE you feel. He’ll likely do his own blood panel on you to see if there has been any fluctuations since the last time you had it drawn. So I wouldn’t be too concerned if your doctor hasn’t faxed it over. But if you really want the records, I’d pick them up before the appointment. That’s the only way you can ensure somethiing has been done.
Have you heard of Mary Shoman? She is a thyroid patient advocate, and writes loads of good info on thyroid support… it is a very trying, obnoxious disease, but with the proper support, you can manage it. If you get frustrated along the way, I’ll do my best to help you through it. I’ve been there, done that. 🙂
Post # 5
@KateByDesign: Gosh, I am so sorry you are going through this. Our little thyroid determine OUR LIFE. I was diagnosed with hypothyroid, so I know how much it affects. I am sure you will have a good doctor and get this straightened out. I was diagnosed in March and we decided to wait and let my body adjust for several months to the meds and then we just got pregnant the first time we stopped using protection. So, I know how important getting those levels right is, and I am betting you will have the same luck.
Post # 6
@cbee: Hey, congrats on the treatment, and the good news!! Looks like everything is going well for you!!
Post # 7
I’m sorry you’re struggling. My husband was diagnosed with this and was on medication for a year, then decided he didn’t need them because he felt normal (yes, because the meds WERE working) and stopped taking it. He went back to the doctor after a year off meds, and he was literally like “I don’t know how you get out of bed in the morning” so now he’s back on medication and behaving properly, and things are so much better. I think it took about three tries to get the level right, but it’s a world of difference for him.
Hopefully you get a positive outcome too!
Post # 8
I also have hashimotos. It took me a while to find a really good doctor who actually knows something about it and how to treat it. I’ve been to GP’s who have no idea what they were doing, other than trying to regulate my abnormal Thyroid levels and I went to a guy who told me I was misdiagnosed because my levels were completely normal (I later got a copy of the labs and saw that the levels were completely off the chart). I finally recently went back to the original endo who diagnosed me with hashimotos just saw a different doctor and I have felt sooo much better. So it can be trial and error finding a good doctor who really knows how to deal with it right.
Make sure you write down everything you feel as you are feeling it. That is what I did after the last guy I went to told me I had no thyroid problems. I made sure I wrote down everything I felt as I was feeling it so the next doctor would know, (ans my current endo told me it also helps them to test for autoimmune diseases that have similar symptoms as it is very common to have more than 1 autoimmune disorder). I have felt every single symptom you have felt and more. It was horrible there were days that I could barely move and woke up every morning sick to my stomach. Once started on synthroid again I have felt so much better, still working on the levels, but I am so much better.
I have read and was told by my endo that no matter if your thryoid levels are normal or not you must be put on at least a small dose of thryoid replacement hormones in order to keep your antibodies from attacking your thyroid or it can cause severe problems later down the road. I wouldn’t worry about the labs not getting sent over. I had the same problem and the endo just ended up doing her own blood tests anyways. Good luck! I hope you are on the road to feeling better soon.
Post # 9
@StuporDuck: Oh hey Jules! Yeah, our priorities changes after Gramps passed this summer. Thanks and how you doin? 🙂
Post # 10
@cbee: Hangin in there! Adjusting to a new semester at school, and counting down the credits until my old self can graduate. Not much longer now!
Post # 11
I am so sorry you’ve suffered for so long without support from your GP. Swear to God, my current GP is the same way and I’m so glad I wasn’t diagnosed under her care (need to find a new GP…). She won’t refer me to an endo because I don’t have a “good reason” other than having hypothyroid.
That being said, I am not always a very good advocate for myself, but I think that list you’ve made is the best thing for you to share with the endo, as well as how you feel like you’re dying on a daily basis. I agree that the endo will probably order new tests for you based on how you’ve described the way you feel.
I am “properly medicated” according to my lab results, and while I feel pretty good on a daily basis, I still forget words for things I shouldn’t forget (AKA like you said – “bread”) and feel colder more often than I did pre-hypo. Like Jules says, this is a trying disease and it may take a while for you to feel really well again.
I’m currently taking levothyroxine and I’m doing OK, but I felt the best when I was taking Armour thyroid, which is made from dessicated pig thyroid (kinda gross, right? Gross yet effective). I ended up needing to switch because there was a shortage, and I’m not sure there isn’t one still because I haven’t tried going back to it. That being said, drugs like Synthroid or levo only address your TSH hormone and don’t address T3 and T4 which can also be a reason for not feeling well.
Good luck with everything and I hope you get the help you deserve from the endo.
Post # 12
I have low thyroid, but not autoimmune (hashimoto’s) and I don’t have all the symptoms but my TSH has been as high as 10. I’ve been on Levothyroxine for almost a year and my levels are normal now and I do feel better, not 100% but better. It took me a few weeks to get used to the meds, but now I don’t have any side effects or anything. If you feel that badly, it sounds like you need to take the meds.
Post # 13
Thanks for the information and support, girls! For some reason I couldn’t sign back in last night to respond. But my appointment is in 2 hours and I’m definitely going to push medication. If she tells me my levels are normal, I’ll have no idea where to go from here. Honestly, I almost feel like checking myself into the hospital and when they ask me what’s wrong I will answer honestly with, “Everything.”
As for medication, what are the initial side effects? When I started Lexapro the side effects were so awful that I had to take off work for 2 weeks and I’ve just started a new job and don’t have that luxury now.
@StuporDuck: Thanks for this info! I’m definitely going to look into her!
Post # 14
@KateByDesign: Depends on the type of meds you get. I’m on Synthroid, and one of the side effects is HAIR LOSS…. Nothing major, but losing hair is a part of the disease, so I wasn’t amused to be losing the same amount of hair while being treated. I seriously clog up the shower drain every time I use it. Drives my husband nuts, but it’s a small price to pay for feeling well.
Other than that, no side effects here. It’s a synthetic version of what your body is supposed to supply anyway, so there aren’t any drug interactions you should be concerned with either (as per my doctor when I asked if I should avoid alcohol).
Good luck, and let us know how it goes. I believe Mary Shomon has a database somewhere with doctors willing to treat within the more recent guidelines of TSH results. Some doctors wait until you are over 10, whereas new information suggests that really should be somewhere around the 3-5 range. It’s all about finding the right doctor, who stays up to date on medical current events, and educating yourself to know what those events are in relation to your disease.
Post # 15
I have an under active thyroid and hasimotos disease as well, I was diagnosed at 17 but it took a year to get that diagnosis since no doctor would believe someone at that age could have it. my hasinmotos level was way off the charts and the highest the endo had seen (being in Perth western Australia he was one of the only ones back then) I don’t understand why your GP isn’t giving you medication ? You have to have medication! I’ve always been told if you miss your meds for one day it puts you back two weeks health wise. There is no side effects with what I take but thanI’ve never heard of any of the names of the medication taken by the ladies on the board here, maybe cause of different meds here in Aust, I take thyroxin, I still get tired, always a bit cold, lose a lot of hair but can function normally – you definitely need to get medication. I’ve spoken to my GP about TTC and she said it will all be fine as long as my levels are constantly monitored – if they are too high or too low itcauses miscarriages, good luck with your appointment 🙂
Post # 16
@KateByDesign: I don’t recall any side effect when I started (I had a ~22 TSH. NOT GOOD!), other than feeling better. My low thyroid function made my hair more coarse and fall out, but once I started meds I didn’t lose as much hair as I did when I was unmedicated. Texture is still a little different on some strands, though. 🙁 Plus, my hair is really dry, which I hear is also a thyroid thing.