treatment plan for Graves' Disease?

[Bryerly]

I am a 43 year old female.  I was diagnosed in February (2008) with Graves’ Disease.  I was started on methimazole (10mg 3x/day).   In March I was switched to PTU (50mg 2x/day) when I developed a rash from the methimazole, and after blood work (Free T3 1.6, Free T4 0.38, TSH 4.05).  In April I went back for blood work (Free T3 1.69, Free T4 0.29, TSH 42.3) and my dose was lowered to 25 mg once/day.  In May my labs indicated that I am still hypo from too much PTU (Free T3 2.06, Free T4 0.25, TSH 53.4) – I am currently taking 25mg PTU every other day.  I am gaining weight (10 lbs. in 2 months), losing my eyebrows, and I have a number of symptoms that I had when first diagnosed with Graves’:  muscle weakness, pain in joints, general malaise, feeling as if I get surges of adrenaline, heart palpitations, hair loss, etc.  My endocrinologist does not communicate well, so I have no idea what his plan is for my treatment.  He shrugs off my concerns about symptoms without explanation.  I am most concerned about chest pain/pressure that seems to cause an achy feeling in my upper back and an occasional surge of pressure in my head.  Sometimes I feel like I’m just not getting enough oxygen.  I am normally very active (biking, hiking, canoeing, etc.), but I just don’t have the energy or stamina to exercise.  My endocrinologist told me that these symptoms are simply related to feeling tired.  Should I be particularly concerned about any of these symptoms? Should I get another opinion?  What is the typical course of treatment for Graves'?

Thank you for any advice you can provide!

[Mark Lupo, M.D.]

Sounds like you may have had thyroiditis and not Graves -- at this point you are hypo and most likely this is not from too much PTU (the dose is quite low) but actually the hypothyroid phase of silent (or possibly subacute) thyroiditis (which is also autoimmune.  I could be wrong, but it is very unusual for this severe a swing in TSH levels.  If you had an I-123 uptake scan done at the initial hyper diagnosis and it showed elevated uptake, then it is graves with an unusual pattern.  You may need a short course of levothyroxine to avoid severe hypo (eg, 50mcg for 4-5 weeks and recheck).

[Miriam65]

Sorry you feel so awful. It sounds familiar.  I'm not a doctor but it sounds to me you need to get off the PTU and wait a week or two before taking another blood test.  It takes awhile sometimes to get it out of your system and to get a read on the TSH levels.  They are way too high according to your blood work.  Your symptoms don't sound like Grave's Disease at this time.  It sounds more Hypo.  Most importantly you have to feel confident with your doctor. It doesn't seem so to me.  Time to change. The disease is hard enough to deal with. You need a doctor that will listen and take good care of you.

[Super_sally888]

Hi Bryerly,

With that level of TSH, I would think you should be stopping the met already and observing very closely.  If the TSH doesn't start coming down quickly you may need replacement thyroxine.

Ideal TSH for a woman is usually be between 1 and 2.

Those symptoms are way too severe to be caused by being tired.  You are not tired, you have severe hypothyroid.  Your doctor dismissing you without explanations or your understanding his treatment plan is not acceptable.

Maybe your initial diagnosis was not correct and what you were having is fluctuations between hypo and hyper, but they caught and treated the hyper.

I think your doctor should be monitoring your very closely at the moment.  It is dangerous to have such severe hypothryoid (which is what your levels indicate), not to mention the very poor quality of life that results from untreated hypo.  If untreated, severe hypo is lifethreatening.

Definitely a second (or third) opinion is called for.  You should be under the care of a doctor you trust and can communicate with well.

You may need to resign yourself to very regular monitoring and it may take a while to work out your meds properly and to start feeling better.  My experience is that when adjusting from hypo to a more normal level it can take 3-5 months to really feel close to decent.

Hang in there and push for answers.  

A good site for information is the Mary Shomon site.

Sally

[Smilerdeb]

you need to ask yr Doctor to do :
FT3
Ft4
TSH
LFT (liver function)
labs again and also see if he can put you on some thyroxine to combat the hypO symptoms.
I have been there many times as suffer with GD and HyperThyroidism and found I was drug sensitive and even a small dose of 5mg Carbimazole (same as mmi) sent me hypO.
Its hell going through HypO and I wish you all the best.
Learn all you can about the disease and most important...learn yr symptoms.
They are the triggers to knowing whether to increase or decrease yr meds after labs are done too.
Take Care :)

[1jitterbug]

Bryerly,

You need to have your labs tested again. Your symptoms describe the very way I felt when my TSH was 89. It sounds like you are going more hypo & you need to decrease the PTU again. Maybe your Graves is starting to settle down & you need to stop the PTU. You won't know until you have your levels checked again. Bug your endo., you know how you feel more than he does...& severe hypothyroidism needs to be treated right away. I know how you feel & it's horrible!

Best,
TJ

[I_LOST_MY_APPETITE]

I am sorry that you are having such symptoms which can affect your life. It is always worth getting a second opinion if you aren't satisfied with treatment. My option for my Graves Disease treatment was simple, take methimazole or do RI. I chose the med which worked pretty well for me until I was taken off of it. Which my Thyroid went hyper again.

I do know the two years that my Thyroid went Euro(I think similar to neutral) my symptoms improved and I was able to get back to my life but with limitations physically and emotionally. I hope that helps!