thanks Tamra, I've just got hold of a copy, it looks great. some pennies starting to drop already reading the first couple of chapters. I really appreciate you taking the time to recommend it.
YL :)
Read this book:
Why Do I Still Have Thyroid Symptoms?
When My Lab Tests are Normal
http://www.thyroidbook.com/
:) Tamra
that's what's scaring me dawnangela, the possiblity of never being properly well again. I think I might have had it almost that long aswell. I'm 42 now and when I was 43 had a 2 month bout of "post viral fatigue" (and glandular fever when I was 16), it's such a drag. I have felt better this month than I did for prevoius months but tiday I feel very tired again, might just be combined effect of a stressful week, period and disturbed night's sleep. I feel I can't trust my body any more to tell me what's going on.
oh lazy moose and everyone on here - thank you for sharing your experiences. I wish we could all just be well.
I feel better than i did after being on treatment for 9months, but i have no idea really what feeling well feels like, they believe i have had this up down not treated Hashi\Hypo\Hyper for around 25 years..
that's great to hear Totie! sounds like you had a pretty tough time nonetheless but I'm so pleased things were sorted out relatively, very, quickly and that you have not had problems since. thanks so much for sharing.
When I had TT & released from hospital, believe it or not I went to the mall.
Everyone is different in how they heal or get to feeling better. I was back at work 10 days after surgery. I did miss about one month total off & on due to thyroid storms (twice) before surgery, but have not had any problems since the surgery. 16YRS AGO...
I did do the RAI at first, but when I hit the second thyroid storm I did not have a choice in the surgery. My body started attacking itself (organs). I had graves/hyper/goiter. No cancer.
I feel for you Kris and hope the new dose will work out for you. I was diagnosed in Aug last year and also started on 50. My doc put me up to 125 at the end of last week, my blood levels now look normal but I still have symptoms, not as bad as they were but still significant. I am at last starting to get back to work so that's good at least. Finally I'm getting referred to an Endo for more detailed tests, I've never had my FT3 checked as my GP sees that as a specialist job and wasn't ready to refer me to a specialist till now.. I'm starting to wonder if I might be like Lazy Moose and need T3 meds aswell as the synthroid but maybe it's too early to tell. So many people are apparently okay, once that critical correct dose of synthroid is reached. I hope for you it's 100 and wish you well. It's so good to compare notes. Would love to keep in touch and see how you progress..
i was diagnosed with Hashi's in Oct - still not feeling good... it's been about 5 mos. I was started on 50 mcg levo and almost felt worse than before i was even on meds, switched to 75mcg synthroid and although not feeling 100%, i had more good days then bad, about 2 weeks ago, started feeling crappy again. Got blood levels checked and TSH was higher than it ever was even before diagnosis. My dr upped my dose to 100mcg. Hoping this will do the trick.
Yes, ten and one half years! Back then at time of diagnosis,I had no home computer and I dont think MedHelp even existed!
There are many like me out there that are still believing everything there doctor(s) are telling them.
What I needed was some T3. I have heard every excuse to stay away from it, wrong , wrong , wrong.........
I even had a doc tell me that people who feel good on dessicated are mental..........the doc was mental!!!
I dont put down T4, as this is all most need. I do put down health care that only supports T4 as a hypothyroid med. I am a living example that T4 is not for all.
That said, the last year was not a walk in the park. Changing to synthetic combo last spring, and now on my 4th type of natural dessicated due to the shortage I was caught in.
I previously mentioned that I also had symptoms which I am now well aware of 10 to 15 years before my actual diagnosis (of 10 1/2 years ago). So thats two decades of symptoms! The last 5 years I wasn't functioning well at all, two years ago I decided to learn about Hoshimoto and all other things thyroid.
This site was a blessing. Thanks to all that helped and continue to answer my more detailed questions to this day.
What I learned:
1)If you are a young male they dont test for thyroid, your against the odds.
2)Odds happen.
3)Doctors or anyone with a fancy title are not necessarily smart with common sense.
4)You need to be your own health care manager, not your GP.
5)read up on thyroid
6)If a doctor feels threatened about your knowledge and puts down any self learning from books, internet ect - run like he// out of the clinic.
7)Hashimoto sounds simple, but not for some of us
I am not 100% yet, I blame a big part of this on the dessicated shortage, and will back stock it forever if possible. Last November was the best month of my life, healthwise. Then my Time Caps Labs brand of dessicated (wasnt to popular) was gone forever so I had too swithch again. The Hoshi roller coaster came back, its a tricky ride to drive for some. And even different brands of dessicated meds have different hypo / hyper symptoms - new things to learn!
I hope to get close to 100% soon by leveling on the labs and thyroid med. Then I can rule out other possibilities.
wow, lazymoose, is that ten and half years it took you to get a treatment regime that worked for you? I wasn't sure if I was reading the numbers you put correctly. that's truly shocking. I hope you are now finally feeling much better? I know you have really struggled with doctors over the years. I am certain I had symptoms for years before being Dx'd aswell, I guess most of us will have had. It's scary stuff.
Diana my heart goes out to you with the hunger and sad feelings (I couldn't label myself depressed but I certainly have had some very weird down feelings with this illness) I was famished for weeks but my appetite now seems to be pretty normal. I think avoiding sugar like the plague is quite a good idea as it sends our blood sugar haywire and makes us crave more. One thing I found helped regulate my appetite was a good quality protein shake before or after breakfast or lunch.
thanks redheadaussie, I hear what you say that we are all different. I'm sorry to hear you are ping ponging after your TT, hope it stabilises soon.
it's so nice to have this site for times when it is difficult to keep our chins up and to share info like this I hope some more people vote, it's interesting to see how the stats shape up though I know it won't be statistically significant. Interesting though. And so good to hear about people's journey's to date.
10 - 1/2 years after diagnose with Hoshimoto. It sucked.
Thats what led me to this place. I am a perfect example of why the cookie cutter health care system does not for all. And treating per TSH range is a joke - it made me suffer all those years. Plus the belief of one med for all (you know what I'm talking about) hypo cases is truly wrong. And I had what I have now learned to be hypo symptoms 10 to 15 tears before being D'xed. Being a young male at the time was one reason I was not tested for Hashi early on.
I am the 2 and half year mark and I still can't get it right! Took 15 years of fighting to get diagnosed, had a TT now feel like a ping pong ball going up and down all the time!
Yes, this site will help you along your journey. It can be a long one for some and a happy one for others. Each and every person is different in how they deal with this rotten disease!
Keep your chin up!
Cheers!
Thank you. I am starting to get nervous about the surgery (its 2 days away) I am more nervous I think for the aftermath. The RAI and treatments, the special diet...etc. As far as my symptoms go, I am constantly hungry. starting to get the depression everyone says happens.
defining a new normal is what this disease is all about. I am so sorry to hear about your granddaughter. Stay strong. This site is very welcoming and helpful. I'm glad you found a place to share your thoughts with us.
Do read the post I left for yellolorry:
I had intended it for you, so now it is meant for her too....
I'm really new to this site, and will eventually get it right...I hope...if I have a good minimal brain fog day....I look forward to hearing the outcome of your surgery, and I pray for an excellent report, and a quick recovery...I'm sorry that you have to deal with a boss that is not encouring you....Just know that I care...
thanks Sharon, for the sentiment and the poetry.
Diana's the one having surgery though, not me.
I'm scared of perhaps never being normal again. My older brother told me that has been his experience of hypothyroidism, having been on meds for more than 20 years. But my sister who has also been on meds the same amount of time reckons she felt fine pretty quickly after starting treatment.
The appetite thing is a funny one isn't it. I was starving hungry constantly when I first diagnosed, now my appetite is much more under control. I'm also working out what are the best vitamins for me to take.
so sorry to hear you have lost your grand daughter, that must be very difficult to bear.
sending you warm wishes
I have nothing more to add, but I had forgotten to check Add to watch list..
Only step by step,
and stage by stage,
can you porceed, in
your journey
upward
My thoughts and prayers are with you, when is your surgery? I pray that you will fell much better after the surgery!
I'm new to all of this I was just diagnosed with a goiter and 1 nodule, so have only been on meds almost 6 weeks. They have been changed once.
I'm one who continues to loose weight, though last time I saw the Dr. 2 weeks ago, I had gained 1/2 lb. I know it is gone now, as I'm not feeling hungry like I did on the other dose...and I am having a hard time figureing out what I can eat, and when I can take my vitamins. etc...I'll figure it out as times goes on, I've no doubt..
I think I accepted the other day, that I will never be normal again....I must define a new normal...that I learned after my granddaughter's tragic death, that I had to define a new normal...it helps me to write things down as they come to me, and these forums are so awesome, what a wonderful tool...When I send a message to someone, I can truly know that I feel and mean it, and that I am not just saying it!
Before I was diagnosed I was losing so much hair, I had bald patches. Gained about 10 pounds and felt tired, worn down, fatigued. I had constant body aches and pains. After I was diagnosed I started taking loevothroid 50mcg. It took about 3 months for my hair to stop falling out. But about 6 months to feel "semi normal" again. After a year though I was back to feeling terrible and thats when my levels were back up and they discovered the cancer. :/ Now that I'm having the surgery to remove it all I'm hoping to feel much, much better. Good luck!