graves disease...do i still have it?

[julia9665]

I was diagnosed with hyperthyroid/graves disease(a mild case) 3 years ago. I had RAI and my blood work still has yet to level off. Do i still have graves if im now going into hypo? Or does it ever go away?

[Barb135]

Have you had a thyroidectomy or ablation on your thyroid to cause TSH to be 5 or 6?  That's pretty high for someone with Graves Disease... If your doctor isn't testing FREE T3 and FREE T4 (not just T3 and T4, which are Total T3 and Total T4 and are obsolete), you need to find a different doctor, especially since you aren't feeling well.

What medication are you taking? What dosage and how long have you been on it?

[stoneycroft06]

hi I have graves disease too.  When I have my bloods taken my TSH is usually between 5 and 6 the GP always says that it is not necessary to take the t4 but it is important to look at3, t4 and tsh to know that all is balanced.  I do not feel well either I get muscle cramps, fatigue, depression , anxiety you name it

[Barb135]

I've found that it's very common for doctors to try to put us patients in the wrong because THEY aren't giving us the treatment we need.  My pcp pretty much accused me of being a hypochondriac when I didn't respond well to synthroid AND he was basing my dosage pretty much on the TSH.  I was told by his NP that Free T3 if for "research purposes only" - I'm thinking "research, yeah, on MY body!!".  Additionally, a lot of doctors don't like that patients have access to so much medical information on the internet and they often get defensive when presented with information gathered from the internet.  It takes away some of their (*to them*) "superior intelligence"....lol

I was fortunate that I got sent to an ENT for issues that supposedly were unrelated to my thyroid; however, he picked up on it immediately and in turn, sent me for antibody testing and an ultra sound and dx'd Hashimoto's, then referred me to an endo.  

I am currently getting TSH, Free T4 and Free T3, along with Tgab and TPOab run every time I get blood work done.  Whenever I see the endo - if we make any changes in meds, I get retested in 6 weeks; otherwise we go approx 3 months for now because I am still not stabilized.  

I take selenium every day - it sort of helps keep the antibodies from raging so badly. I also take daily magnesium, which helps a lot with the muscle/joint aches and pains.  And I take 1200 mg calcium daily (one dose at noon with the selenium; one dose at bedtime with the magnesium).  Some vitamins inhibit the absorption of thyroid med and should not be taken within 4 hours of the thyroid med.  I know calcium is one of them and I'm not really sure about the rest, so I just make sure I space them ALL at least 4 hrs, with the exception of my vitamin B12 shots - I have to do those first thing in the morning or I'm too hyped to sleep, but those are only every 2 weeks.  I also take omega 3 fish oil because it, along with the magnesium helps me with joint aches AND my hair seems to be healthier and doesn't fall out as badly when I take the omega 3.  These are just what *I* take and may not work for someone else.  

I hope you get in to see the new endo soon and that you get the proper tests done.  

[julia9665]

thank you so much for giving me some information on what tests to ask for. So yesterday i saw my general doctor and asked for the FT4,FT3 and antibodies test. He ordered the FT4 and FT3 under protest along with a bunch of other blood tests but told me that the antibody test would be useless and come back positive anyway since i have Grave's disease. Wouldnt the level of antibodies in my blood be a connection to maybe how im feeling? He really made me feel like im faking all these symptoms and they are all in my head. OH i almost forgot, my TSH level is 10.73 when the lab range is .33 - 5.50, his words now "at levels around where you are (10.73) we (doctors) usually dont treat that as "BAD" and do nothing about it and i shouldnt be feeling the way i am."
I almost fell out of my chair when he said that, like im in the wrong for feeling this way and because i did some homework im adding to my symptom list because of it.

He is referring me to an endo, and who knows when i will be able to get in to see him. Is there anything else i can be doing for myself? Vitamins, omega3, etc? I just turned 40 and im wondering if my own body hormones are changing and im guessing if they are that would screw up my TSH levels.

[Smilerdeb]

With RAI done a year and a half ago...you should be starting to see a stabilisation of your levels (which isnt the case for you).

Go back and demand your FT3, FT4 done and as Stella said...antibody testing.

I had RAI a year ago and I was basically stable after 6 months with a few minor hiccups along the way but other than that....good levels.

You should be 2/3 of the way to recovery and I would be asking the Doc why not.

[stella5349]

"Once Graves always Graves" is the slogan.  If you are only beiing based off a TSH reading - you may never be well. Those other tests are/were created to exam the thyroid itself.

It's not the TSH - pitutiary testing that tells all . It "can" be useful and should be done - but doctors should start rethinking the Free T3 and the Free T4 tests as a tool to regulate the function of a thyroid ( or meds that do the job the thyroid once did)

Another situation that is commonly overlooked is once an autoimmune hyperthyroid test is done ( Graves) they do not exam further in many cases. You "could" have TPOab antibodies ( Hashimoto) in there also and now that you had RAI to suppress the thyroid function for the Graves antibodies - the antibodies of Hashimoto could be attacking the ablated gland too. This could be why you are not responding to your medication and never feel well.

I think it is inadequent testing that is happening. If the doctor is only looking at the TSH on you and trying to balance meds out on that. You could be up against a wall trying to regain your health.

Just the condacending attitude that your doctor said about a Free T4 test is enough for me to think that if you went in and asked for a Free T3-Free T4 and maybe a Hashimoto test (TPOab and TgAb) she may laugh you right out the door.

Surgery will not fix the issues of antibodies floating around inside your body. They will continue to attack whatever they choose regardless.

It's time for a doctor to look at suppression of antibodies and balance your FT3 and FT4 in order to get your well.

In essence, if you continue to let your body remain "off" other things can weaken. The adrenals will start to bog down and become ill too. The longer left hypothyroid, the more things will be effected and it will be harder to get things back on track.

Listen to your body, know if you don't feel well - something isn't right. I suggested talking to your doctor about more antibody testing and getting the free tests.

It didn't click in my head for 7 years - I listened to shotty care treatment and stayed ill way too long and lost a whole lotta time on the couch feeling like I was going to die.

[julia9665]

thankyou for getting back to me. I already had the RAI a year and a half ago and am now on synthroid (175 mg). I only get the TSH blood work done and my latest blood test was TSH 10.73 (ranges .33-5.50). I havent seen an endo since shortly after having the RAI done, she told me that the T4 test isnt important so since ive only been getting TSH done. But now i feel totally unwell.I have an appointment with my regular GP on thursday and im asking for a referral to another endo, i want all of this to be over so im contemplating surgery now. Is that a wise choice? Ive been fighting with my TSH levels for 3 years, and i gotta say when they are out of range i can sure feel it. I just dont think i can handle many more years of feeling like this, its awful!

[kidsnchicks]

Yes, once you have Graves, you will always have Graves.  It is a permanent condition.  It is an autoimmune disorder in which your body is attacking your thyroid - thus an over active thyroid (Hyperthyroidism).  It is treatable though.  You can have Graves and become hypo, especially if treated with RAI.  The thyroid is treated either with anti-thyroid meds or Radio Active Iodine.  Do research on it.  It can also affect the eyes.  I could list lots of info (links) for you but it would be best if you talked with your doctor and did some research for yourself.

When you say your blood word has yet to lever off, what exactly are you referring to?  Are you seeing an Endocrinologist?  What are your latest test results (with referrance ranges)?

[Totie]

Good question. I think I have asked this before and was told yes, but can't remember. I had graves about 15yrs ago. (TT)

I do however have two linger symptoms that I will always have. Insomnia, and Thyroid Eye Disease.  TED under control with medication, Insomnia (I just learned to live with lack of sleep).