Discussion in 'Health & Beauty' started by Erik, Feb 17, 2010.
find another dr? some people had to go through a few before they got help.
This is a rough disease to have. I have Hashimoto's and a conversion problem. I started off having my TSH, Free T3, Free T4, Total T3, Total T4 and antibodies tested. Now I'm down to TSH, Free T3 and Free T4. It's crazy trying to manage this because as my body attacks the thyroid, my thyroid sputters a little and throws in some of its own hormone giving my periodic hyperthyroid symptoms. I'm watched pretty closely. I go in for testing in another four weeks. I wish you all luck trying to manage this disease.
Its know as the roller coaster disease.
I have hashi's. eventually you you go will completely hypo and wont hyper episodes/the antibody attacks. Thankfully im completely hypo and dont deal with that any more pertaining to my thyroid.
Sometimes, if it can't be controlled,you might have to have the thyroid killed off some.
There is a method called block and replace but few doc know about it or how to regulate it.
Ileen, how long have you had your thyroid problems. I was wondering this the other day. Just curious to see how long it's taken you to get to a regulated thyroid stage. I know it takes a long time to get adjusted since everyone is different. Or do you still have to get your meds adjusted? Just wondering...
As you stated everyone is different with different hormone issues etc.
My thyroid issues started back in '92 , I was diagnosed with Graves. They wanted me to have my thyorid radiated.. I refused due to nursing a newborn (ds#3) I took PTU, which slowed down my thryoid and supposedly put me in remission.
Concieved DS#4 , and didnt need any medication. 'normal' Ds#5 was born in 99 and that was about when things really started to go down hill but drs all said normal... but I felt craptastic.
In 2003 was diagnosed with Hashi's and finally starting taking medication for HYPO. It took about 2yrs to get me on a stable dose as we kept slowly tweaking. I've changed brands and such along the way (recently just switched to a new natural thyroid medication called NP thyroid - NO cellulose! and im now taking natural estrogen and progesterone so that also had me tweaking my dosage again.
Hey Ileen! I've actually got nearly all of the symptoms here (plus a few more, to boot)...many doctors have suspected that I have an autoimmune disease for years, but my tests all came back "normal", so no one ever followed up.
Over the last 6 months, however, things have gotten much worse for me and I went to the doctor to get some more thorough tests. My free T3, free T4 and TSH all came back "within range" (although my TSH was higher in than it was 6 months ago); however, an ultrasound of my thyroid showed a significantly enlarged right lobe (you can see it protruding from my neck) with "extremely heterogenous echotexture" in the right lobe and "somewhat heterogenous echotexture" in the left lobe. My doctor took the "normal" blood work to mean that I'm fine and only wants to follow up with another ultrasound in a year!! :ruloco:
I'm seeking a second opinion, but I know you have Hashimoto's and I wonder if you have any advice you can give me to help me get this figured out?
Thanks so much for any advice you can give me!! :wave:
Goodness! You need a doctorectomy!
My advice would be stop going back to that dr. What state/close city are you in. I might have a suggestion.
:funny: A doctorectomy!! I love it!! Soooo true!!
I'm in Maryland, near Washington DC. I made an appointment in the Endocrinology Department at John's Hopkins, but I couldn't get in until October and I don't know if they're the best place to go, despite the reputation. A suggestion or reference for a GOOD doctor who knows about thyroid issues would be awesome, thanks!! :hug:
That is a hard area for thyroid issues.. most often, to be honest, endo stink! Keep that appt but let me look and see what i find.
Suspects autoimmune disease? Did he TEST for the autoimmune issues. Did the dr test the thyroid antibodies? That was how i was finally diagnosed.
Let me do some digging. I'll get back to you.
sent you a pm.
Ohhh, really? Good to know! Thanks for the advice!
This particular doctor who ignored my ultrasound results isn't the one who suspected an autoimmune issue. I've been to goodness knows how many doctors for these symptoms for the last 8 years or so. Some of them suspected autoimmune issues, but as far as I know the only thing they ever check to "confirm" this was my sed rate. :wtf: :banghead:
Honestly, before I went to the doctor two weeks ago, I didn't even know about the antibodies test. I had to research on my own more about the tests because I was so frustrated that my results were "normal" when I am clearly anything BUT normal! So, no, she didn't test for the antibodies. I know I need to get those tested now, but my doctor refused to pursue the issue further. Hence, me going to find another doctor who might be less of a thyroid idiot. :ruloco:
Thanks so much for helping me out with this! I'm having a hard time functioning normally lately...I can't accept "you're fine" as an answer anymore.
Try to find a different doctor!
I am in the US, so I know there are different issues with the healthcare. But, I was having most of these symptoms. I had an OB order some of these tests because I was having very irregular and strange cycles and I convinced myself I must have some bizarre cancer or something. When she told me what she was testing for, I went home and googled and was surprised to find I had the majority of symptoms. None of the individual symptoms (except the irregular cycles) would have sent me to the doctor, but suddenly, the whole of them all made sense. I was not going to quit until I found someone to take me seriously. The test came back borderline even by the newest guidelines (I think the newest guidelines say TSH over 3 is hypo. But, beware the old symptoms say anything over 5, which is a big difference). But, mine was like 2.9. Yet, my body was going wacko! I did some research to find a doctor who would treat the symptoms and not the number and it has made a huge difference! Once I learned more, I also thought that the symptoms fit my mother and urged her to go get a test. Every time my mom visited me, she would ask if I had correctol or some laxative. And, she was also so cold it was annoying. It could be 75 degrees in my house and she had two pairs of wool socks on. Crazy! Well, she got tested and her number came back at 5.6! So, I believe this has a genetic component and I was certainly headed in that direction since I quickly began to spiral! My regular general doctor would not treat me, but I did convince her to refer me to this doctor I found who was a bit unconventional and treated by symptoms. Since there was a long wait list, she even made a call and wrote a letter to get me in ASAP and I had an appointment a week later. Maybe a holistic doctor would even be a great one to see. So, keep digging. Get every name you can and don't stop badgering until you find someone to listen to you. Tell your doctor to humor you and make the referral, just to be sure. Best of luck!
I would try to see a Holistic Doctor, like a Naturopath. Just because your numbers are ok, doesn't mean that your body is converting your hormones properly. You may not be converting T3 to T4 (or the other way around, I always get them mixed up). No blood test will ever tell you if you are converting your hormones. A Naturopath will have experience with this.
yes and no.
caution some NP only do supplements.. be wary of that too..
research your condition is your best defense.
This is great information, thank you! Ileen, when you say it's a roller coaster disease, do you mean that you can go through periods where you're hypo and then it goes back to normal,then hypo again? I swear I have it and my doctor even tested for the "free"s but the results were normal. But here have been two seperate occasions where I had bald patches on my scalp and excessive, sudden weight gain. And since my second child was born, my hair has been coarse and dry. My mother has Hachiomoto's and my dad has thyroid cancer but doctors say genetics aren't a big player for these. I swear I have it for awhile and then I don't.
hashi's has periods of up and down, hyper/hypo but there are times even when down/hypo you might struggle as other hormones tend to go out of whack.
You need a new dr!
Here's a somewhat related issue....I'm hoping Ileen or someone else might be able to give me an answer. Or a place to look for an answer. I was diagnosed about 8 months ago with Hashi's and I've been on Armor Thyroid for that time period, with a good amount of success dealing with my Hashi's symptoms. However, last week I was diagnosed with Metastasized Papillary Thyroid Cancer and I'll be having surgery to remove my entire thyroid and a number of affected lymph nodes, followed by radioactive iodine therapy. Even though I'm already on thyroid medication, I don't know what changes will need to be made to the brand/dosing for a total thyroidectomy and how this will likely affect my metabolism. Are there some medications that are better than others for thyroid hormone replacement?
Can anyone offer any insight or maybe point me to some good resources? I know that the doctor who will be managing my care is supposedly an expert in thyroid cancer (Dr. Leonard Wartofsky)....but I haven't seen him yet and I'm also wondering what effect this will have on my figure competition goals.
Thanks to anyone who can offer any advice!!
Keren i hope you are not too worried.. IF there was ever a 'good' cancer to get, its thyroid as its REALLY slow growing...
once you are post op.you will be medicated to keep your TSH down below one or well surpressed. There really isnt much to worry about other than being below one, might not have your free T3 and freet4 optimal, so keep on eye on that. Hopefully you have had a good dr monitoring you all this time.. Endo arent needed to keep up your thyroid care once you are past surgury, other than to run scans and double check yrly for the 'all clear'
Thanks for your response. I know that of all the types of cancer to get, this one is the least scary...although I don't think it's possible to have cancer and not be at least a little scared. And nervous about the surgery and how not having a thyroid will impact my life. Basically, the unknowns are scary. How do I know if my free T3 and free T4 are optimal? I like my internist, who has been managing the Hashi's, but as it's so new, I don't really have much of a frame of reference..
if your internist is good at managing your hashi's then you'll be fine sticking with him post op as long as you have yrly follow ups with your endo. Many endos tend to keep patients undermedicated as they feel as long as your 'surpressed' your ok.. that will be where you internist will come in.
You'd test free t3 and free t4 along with and most importantly symptoms.