Tips for dealing with the disease?

[danie17075rm]

I am 31 and posted a few things on here before that some of you might have read.  I was diagnosed with a multinodular goiter and hashimoto's a little over 3 years ago.  It started out as a NIGHTMARE as I was going through a thyroditis attack and I had trouble sleeping and swallowing.  Medication helped a bit and I was seemingly fine (well at least as fine as I'll probably ever be again) until 6 months ago.  Now I am just one huge mess.  I went hyper  (tsh .001) which caused horrible panic attacks and anxiety.  I went to a therapist, who completely agrees that my panic attacks are not mental, and are completely physical.  My body just feels like it has constant adrenaline.  I take a beta blocker which helps a bit, but leaves me feeling tired.  I can't sleep.  My body aches.  I feel like I can never breathe.  My heart is always palpitating.  My hair is falling out.  My skin is dry.  I have periods of heart racing and hot flashes.  My cheeks just turn red and flushed spontaneously.  I can't eat gluten, and I'm developing allergies.  My blood pressure has now went high.  I have constant bowel movements and upset stomach.  I yawn all day long and I have constant heartburn and acid reflux.  My tsh is going up and down, but I can't tolerate levothyroxine.  I was wondering if I should switch to synthroid or natural thyroid.  I take 1/4 of the .025 every other day which is a ridiculously low amount, but without it my tsh shot up to 26.  Right now it is around 11, and my antibodies are at 250 but every time I take my meds I have horrible heart palps, panic attacks, head aches and shortness of breath.  I don't know what to do anymore.  I was going to ask my doc to test me for hyper and hypo antibodies and maybe test my adrenal glands. Does anyone have any other solutions?  I feel like I just can't live my life, and I have a 5 year old.  It's really depressing.  Thanks in advance for any replies.

[gimel]

Here's a link to some info on it.

http://parathyroid.com/diagnosis.htm

[danie17075rm]

Thank you gimel.  I go tomorrow to ask my endo for all these.  I am just praying he will listen!  Do you know the name of the test for the parathyroid?

[gimel]

Just one last thought before the blood test.  Make sure the person drawing blood is aware of the free T3 and free T4 tests, and that it is not total T3 and total T4.  You'd be amazed how often this gets screwed up, because they are so used to testing for Totals, and not for the Frees.  

[danie17075rm]

Gimel - that is too funny about the heavy chain and padlock.  I'm about to get to the point lol.  Thanks SOOOO much for the tests I need.  I was supposed to get my blood test tomorrow, but I'm going to call and ask if he can order these before I do.  My endocrinologist *****, but on a positive note, its REALLY easy to get in to see him and change appointments around.  I will let you all know the results when I have them.

K-- thanks, it really is nice to know it's just not me.  I feel such sympathy for everyone on this site and I'm blessed to have people that understand!

[kl42]

your not alone!

[gimel]

Sounds like the tests you will be requesting should be a 24 hour cortisol test where they do multiple samples, and TPO ab and TG ab for thyroid antibodies, and TSI for Graves.  When you ask about the free T3 and free T4, if the doctor resists, you should insist on it and don't take no for an answer.  Remember that you are the customer.  In a similar circumstance one of our members said that she told the doctor she was going to buy a heavy chain and padlock and chain herself to his desk, until he agreed to do the testing.  LOL

Please keep us tuned in to your progress.

[danie17075rm]

Thank you Red for the response.  It makes me feel better that I'm not alone, but it's kind of scary at the same time reading all the things you guys have to go through.  I am buying a book on the endocrine system, and I study everything I can about it in my spare time.  I feel like I have to take matters into my own hand, as my doctors are clueless.  It appears you guys have done that.  You all seem to know so much.  How did you learn so much about thyroids?  Thanks for the suggestions of what tests to ask for.  I have an appointment next week and I'm going to beg my endo to do them.  He thinks everything is just in my head, but I now have proof from a psychologist that it's not.  She even volunteered to write letters on my account because she believes it's ridiculous that they are treating me this way.  I'm just still in shock at how debilitating this disease it.  You would think they would offer disability for it!  When your thyroid is out of whack, it is impossible to do anything!  I stay at home with my son until I finish school, but it scares me about working.  There is no way I could hold a job at this point.  I hope things get better.  You guys are so strong in handling this all.  Thanks again for your response.

Gimel -- thanks for the heads up.  I will definitely ask my doctor about this.  I have never heard of it.  It's good to know I can going there now at least asking him for a few things (since he would never do anything on his own).  Thanks for the info.

[gimel]

Since the levo bothers you so much, but it appears that you really need medication, you might consider the newest thyroid med that has been reported on here.  It is called Tirosint, and it has no dyes, or fillers, which is what many patients have problems with.

http://www.medhelp.org/posts/Thyroid-Disorders/TIROSINT----NEW--T4-MED/show/1409513

If you look for Tirosint using the search function above  you'll find several threads with info about it.  Trying Tirosint might be a starting place for you, and if it works but you find later that you also need a source of T3, then you could always add in some Cytomel.

I totally agree with Red about the need for more testing beyond TSH.  I can give you lots of links to data showing that TSH is useless as the sole diagnostic for thyroid problems.

[redheadaussie]

Aha, I see you are living my daily horror story too! LOL!

I know it is no laughing matter.

Have you had any recent blood tests done? Just coz your TSH goes shooting up doesn't mean you aren't still getting too much thyroxine. A Free T4 test will show how much you are obtaining.

The other issue is, a pituitary gland one. You can get hyper symptoms big time, with a high TSH level.

I have lived your life and continue to do so. I know that when I was super hyper, I had to call a psychiatric triage nurse who assured me he sees many many many thyroid patients who are on incorrect dosages.

I would also like to know are you taking the birth control pill? The high levels of oestrogen do affect the thyroid medication. Are you a big seafood eater? Iodine in many seafood can affect it too. Do any of your skin care products have seaweed extract in them? Again this affects thyroid medication and function.
It might be worth your while to switch to something else.
It would be very wise to get more blood tests done including the antibodies and Free T3 and Free T4 as well as the TSH.
Also importantly to ask for the TSI which will test for Grave's.