[boobookitty712]

#1018958

I am so glad to have finally found this. I was diagnosed with Graves in April of 2008 while in the middle of a military move to Okinawa, Japan. Literally I got the diagnosis as our household goods were being shipped. As it turns out, had I gotten the diagnosis sooner, we would never been allowed to move here since there isn’t an endocrinologist on the island. I also showed slight signs of TED. Anyway, I was severely hyper and put on Tapazole. 5 weeks later I went in for extreme itching and found that I had gone from being severely hyper to hypo and taken off the Tapazole. The primary doctor here took it as being an allergic reaction to the meds, instead of a reaction to my dose needing to be lowered, regardless I was switched to PTU. Since that time I have gone from 150 mg PTU per day in July of last year, down to 25 mg per day as of last month. My levels were steadily decreasing, until they were stable with my TSH at .7 and my FT4 at 1.1 for 3 consecutive labs. My TSI also went from over 220% at diagnosis down to 90%. This was in June of this year. I went back a few weeks ago for a checkup, and my TSH dropped to .4 and my FT4 dropped to .8.

Here is where I’m confused. The doctor (who never misses a visit in telling me if I were his wife he would force me into RAI and that I am making a mistake in wanting to treat it with ATD’s) said that I needed to increase my dose to 37.5 mg of PTU per day. 50 mg sent me hypo last year. He even consulted with the closest endocrinologist in Hawaii who said there was no reason to ever run FT4 or 3, and that you dose based on TSH. But both my TSH and FT4 decreased. Wouldn’t increasing my dose decrease my FT4 even more making me hypo? I am totally opposed to RAI (I’m just not comfortable with it for me) so my only options are PTU or surgery, and I don’t particularly trust the surgery dept here on the island, I just don’t think they do it enough for me to trust them.

I’m so lost at this point. There are no other doctors here for me to consult with, and we are stationed here until mid 2011. I’m exhausted mentally and physically, depressed, and feeling like there is no hope. Does anyone have any advice?

[npatterson]

#1068109

I wish you were not the first military person we have heard from!

Give me a chance to contact one of the doctors that helped to start the NGDF. He is now in the Virgin Islands at the VA hospital. As far as I know he is the only endocrinologist. He is a tremendous advocate for the military personnell.

Write to me at "nancyngdf@bellsouth.net". I can send you some information about the treatments. In the meantime, begin to collect copies of your labs, over time. Insist (if you can) on having FT3 and FT4, as well as TSH.

I don’t really have much advice for you, but I do think I can get you to someone who will have some [relevant] advice. For now, continue to be your own best advocate, and get your information from reliable sources.

Take care,

[mamabear]

#1068110

I dont have advice either except that I too have been on PTU. Keep up the good work of being the greatest advocate you can be for yourself. PM me if you get so angry you just have to curse! Been there done that! My PM box is always open and cursing is allowed.

Good luck and keep us posted!

[Kimberly]

#1068111

boobookitty712 wrote: He even consulted with the closest endocrinologist in Hawaii who said there was no reason to ever run FT4 or 3, and that you dose based on TSH. But both my TSH and FT4 decreased. Wouldn’t increasing my dose decrease my FT4 even more making me hypo?

Yes, increasing your dose *would* make your FT3 and FT4 drop even further. You don’t list ranges, but 0.8 for FT4 looks pretty close to the bottom of the "normal" barrel.

My guess is that most of the Hawaii endo’s patients all feel miserable — that’s awful. TSH is not a good benchmark for dosing when we are hyper, because it is a lagging indicator and can remain supressed for long periods of time.

Hopefully, Nancy will be able to hook you up with someone who actually knows what he/she is doing!

Hang in there!

[Bobbi]

#1068112

A quick response here. A DROP in your TSH means that you are more hyperthyroid than you were at the previous blood test, which is why a doctor would RAISE your PTU dose. The TSH stands for Thyroid Stimulating Hormone, and it comes from the pituitary which acts as a "thermostat" for thyroid hormone production. When the pituitary senses too much thyroid hormone, it reduces its production of TSH (i.e. the TSH number drops); if the pituitary senses too little thyroid hormone, it raises it’s production of TSH to stimulate thyroid cells to produce more hormone. Think of a seesaw with TSH on one side and thyroid hormone on the other. As one goes up, the other goes down, and vice versa.

As to why there can be fluctuations? You have an autoimmune disease. Antibodies cause your thyroid issues. As antibody action increases, you have greater symptoms. But antibodies can increase or diminish for no well-understood reason. The medication you are on only affects the production of thyroid hormone. It does not affect the numbers or behavior of antibodies. They vary independently of the medication.

My endo — who I think is terrific, by the way — does not check for freeT4 and T3 levels on any ongoing basis. Those levels were checked initially to try to determine the degree of hyperness, whether or not methimazole or PTU might be a more appropriate medication, etc., but they are not necessary all the time. The TSH is considered a "finer" test, able to test more minute quantities of TSH than any of the thyroid hormone tests. And the TSH does not fluctuate as quickly as the other thyroid hormone levels do so it gives a larger picture of where our levels are on average. I point this out so that you won’t necessarily fault the doctor you see because he/she isn’t running those tests.

I do hope you are feeling better soon.

[boobookitty712]

#1068113

I just want to thank you all for your responses. It helps just to know there are others out there. Even when people try to be sympathetic, it’s hard because I know they really don’t understand.

I do have one question for you Bobbi. Back in the states, my civilian endocrinologist who diagnosed me was the one who originally told me that the "old" way of doing things was basing dosage changes off TSH, but that FT3 and FT4 levels were better indicators, and my research since then has always led me to believe that, which led me to part of my frustration on the doctor here. But if yours bases off of TSH and you’re doing ok, who am I to argue that point. My problem with it in my case is that the FT4 WAS run, and it decreased along with my TSH. So while my FT4 dropped to borderline a borderline low level, instead of more TSH being produced, my TSH also dropped. So it seems my seesaw is broken, LOL. That’s why I’m so confused. I can’t find anything that says what it means when TSH and FT4 BOTH drop, and drop into the low range. I know my doctor doesn’t know, no slam intended on him in this case, he’s not a specialist, he’s just trying to do the best he can with really not a lot of knowledge to go off of.

It’s things like this that make me re-consider just having the surgery and quit fighting, I feel like I’m fighting a losing battle anyway. If the ENT here did more of these surgeries, I probably already would have done it. It’s my mistrust of the surgeons skill in performing this specific surgery that keeps holding me back.

[Kimberly]

#1068114

boobookitty712 wrote: I do have one question for you Bobbi. Back in the states, my civilian endocrinologist who diagnosed me was the one who originally told me that the "old" way of doing things was basing dosage changes off TSH, but that FT3 and FT4 levels were better indicators, and my research since then has always led me to believe that, which led me to part of my frustration on the doctor here. But if yours bases off of TSH and you’re doing ok, who am I to argue that point.

Sorry if this ends up being a double post…I was typing a response when my post went "poof". Weird.

boobookitty712 – Everyone is different with Graves, and you should never just take someone’s word and say "who am I to argue".

Bobbi – When your doctor was using TSH, was this to determine your level of ATD…or the appropriate level of replacement hormone following TT/RAI? My understanding from the Thyroid Manager site is that FT3 and FT4 are the "gold standard" for patients who are on ATDs, because TSH can remain supressed for quite some time. If this approach worked out for you on ATDs, it must be because your TSH bounced back quickly, which does *not* happen with all Graves’ patients.

And for those of us that have that issue (including me), ignoring the FT3 and FT4 and continuing to increase the dosage of ATDs based on TSH will send us into hypO territory.

[James]

#1068115

I’ve always had FT3 FT4 and TSH tested while on ATD’s and I insisted on it for the very reasons that Kimberly pointed out. It wasn’t until I was solidly in remission for a period of time before I started testing TSH only. At least now, I know where my baseline TSH should be; any trend downward in TSH would require FT3 & FT4 testing again, at least I would insist on that. My euthyroid TSH levels always have been on the lower side of normal. I most certainly wouldn’t want to be put on ATD’s unnecessarily when my T3/T4’s were actually at my personal optimum. It is important to find that “personal optimum” and not just be “within the normal range”. Experience and studying your own lab reports over time can help you make that determination.

James

[Bobbi]

#1068116

Thanks, James and Kimberley, for the update. My free levels were tested early on, so that must have been while I was on PTU. But they were not done all the time: only once or twice. But I am a bit of a dinosaur here: my RAI was (gulp) twelve years ago! So, you are probably right — there is a different scheme of things in today’s treatment world for those of us who are on replacement vs. those of you who are on ATDs.

[Kimberly]

#1068117

Bobbi wrote:Thanks, James and Kimberley, for the update. My free levels were tested early on, so that must have been while I was on PTU. But they were not done all the time: only once or twice. But I am a bit of a dinosaur here: my RAI was (gulp) twelve years ago!

No worries! Endos seem to sloooooooooowly be coming around to routinely testing FT3 and FT4. When I was diagnosed in 2007, I got into an absolute dogfight with my endo’s office about the need for FT3 and FT4 testing. They gave me all sorts of B.S. about how the insurance company wouldn’t pay for it. (Wrong, they *do*.) I would actually take their lab slip, and then circle all of the tests that they left off before having my blood drawn.

Now they routinely test FT3 and FT4 without me having to ask…and they are basing my dosing decisions on that as well. Progress!!

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