[gatorgirly]

#1059477

I feel like after having Graves’ for going on three years, I should understand lab values better, but I don’t. Before RAI, my TSH was always nonexistant while my T3 and T4 were sky high – typical for us Graves’ patients. Since RAI (in February 2011) and finally becoming hypo (in August 2011), I have struggled to find the correct Synthroid dose. I started at 100mcg, became hyper. I dropped down to 75mcg, still hyper. Started alternating 50mcg and 75mcg, became hypo. Finally found my “sweet spot” in September after taking 88mcg for six weeks, I was finally euthyroid for once. All this time, my T3 and T4 have been normal while my TSH has been the offender. Is this normal?

I had labs drawn last week, and I’m hyper again. But yet again, my T3 and T4 are normal while my TSH is 0.09 (my lab’s normal is 0.5-5.0). Why is only my TSH all over the place?

I was told to drop down to 75mcg. I am hesitant to throw away the 88mcg, because I just refilled it like two weeks ago. This is becoming so exhausting and expensive. I think I will finish out the 88mcg (about two more weeks left) and then fill the script for 75mcg. I am almost two years post-RAI and I have been euthyroid for a total of maybe five weeks. My weight is not changing (AKA – I don’t feel hyper). I’m considering going to my PCP for a physical to rule out other causes of this constant fluctuation in my levels. In addition, I started seeing a nutritionist who basically told me to stick to 1,200 calories a day, eat more vegetables, and work out six days a week and I’ll lose 1-2lbs a week. We’ll see… I almost wish I had the hyper symptoms to match my TSH.

[Kimberly]

#1174922

Hello – I do know of one patient several years post-RAI who has had widely varying TSH levels, but unfortunately, I don’t have a good explanation for you.

TSH is believed to be a “running average” of levels over the last few weeks, so that’s certainly odd that your T3/T4 have been stable through all of this.

Hopefully, others will chime in here with their experiences.

Be *very* patient with yourself on the weight loss. I know that one could normally expect to lose 1-2 pounds per week on that type of regimen, but my personal experience is that the degree of difficulty tends to increase once we’ve had thyroid issues. Your mileage may vary, though…hopefully, for the better!

[catstuart7]

#1174923

Hi Gatorgirly, sorry to hear you are getting jerked up and down and around by the TSH. I am imagining a collection of prescription bottles full of different dosages of hormone collecting in your bathroom cabinet! My understanding as a non-doc so far is that in Graves’ patients the TSH alone cannot be what determines the dose of antithyroid meds before intervention or replacement hormone after because the auto-antibodies trick the pituitary directly (even after RAI or surgery when thyroid is no longer an issue) into giving out wrong amounts of TSH. So if you still have any eye symptoms then you certainly have antibodies that are still active in the system and those can derail your TSH even if your actual thyroid hormone in the blood is okay.

Here’s a link to a study about this to show you guys I’ve not gone mad:

“The explanation for this continued suppression of TSH is unknown, but it is usually attributed to a delayed recovery of the pituitary-thyroid axis (6). We offer an alternative explanation, involving a direct effect of TRAb on TSH secretion by the pituitary. We have recently postulated that in addition to a negative feedback control by T4 levels, TSH secretion is influenced through a negative ultra-short-loop feedback mechanism within the pituitary. “

Suppression of Serum TSH

[gatorgirly]

#1174924

My understand has been that I will always have Graves’ and its antibodies. As for eye symptoms, I had bilateral orbital decompression five weeks ago because I had been in the cold phase of TED for more than a year, so no eye symptoms. I read the study but couldn’t find anything about post-RAI or TT patients, so I’m not sure how to interpret it.

[catstuart7]

#1174925

Hi Gatorgirly, how are you doing post surgery??? Hope it went well!

About interpreting the study here’s how I’m seeing it (you or your doc may read it differently…) This line is the money quote:

“We offer an alternative explanation, involving a direct effect of TRAb on TSH secretion by the pituitary.”

The TRab are the thyroid receptor antibodies of Graves. These are with us for life but do wax and wane in their quantity. They propose that these are acting directly on TSH receptors in the pituitary itself. This causes

“TSH secretion is influenced through a negative ultra-short-loop feedback mechanism within the pituitary.”

the short-loop feedback causing the pituitary to release a suppressed amount of TSH in the face of normal thyroid levels. Whether those thyroid levels are normal because of taking antithyroid drugs or whether they are normal because your thyroid was ablated/removed should not matter in this scenario. But true in all the studies I’ve found showing antibody suppression of TSH, they are not on people post RAI or post TT, but I’ve not exhaustively looked at everything but it is my goal one day! Maybe run it by your doc and see what he/she thinks?

Edited to add: the upshot of all this is that if 88mcg leaves you feeling good and your FT3 and FT4 where it should be then the TSH alone should not be a reason to change it.

[gatorgirly]

#1174926

Thanks for that. I am going to call my endocrinologist and see if I can get in to see him so we can hash all this out. You’re right that I feel good on 88mcg despite a very low TSH, but I also felt good when it was a normal. I know symptoms tend to lag along with TSH, so maybe I will start feeling hyper soon. Who knows? Either way, I have another 10 days of 88mcg. Hopefully I can get in to see my endo before then.

Oh, and thanks for asking. I’m feeling great post-surgery. The results are immediate visible to everyone who has seen me and knew how bad my eyes were before. I’m back to 100% physically and mentally. The only lasting effect is the numbness on the right side of my face from nerve damage during the surgery, but the feeling is slowly returning in the form of pain and itching. I’ll take it!

[snelsen]

#1174927

To Gatorgirly,
I wonder if you should wait much longer between dose changes and labs before you change mcg. of Synthroid? It is my understanding, that when we have had a supposed TSH for a LONG period of time, that it will take a long time before there is a change. I am in that place right now. No matter how my dose is changed, my TSH says I am hyper. T3 within range T4 a little high. I feel fine. So my endo and I decided to decrease from125 to 112, but this time, I am going to wait at least 6 months before we do another lab. Just a thought. I have found Graves’ very tricky to manage. I have found TED the worst thing that I have every experienced.

Speaking of TED, did you have both eyes done at once? I think I remember that, and did not look back to check. Did you have a lot of orbital fat? How many walls did they “do” on each eye? I think I understand that if the inferior wall is left alone, there is much less chance of double vision.

Catstuart-thanks for that reference. I’ll show it to my endo. No matter how many times I read it, I am hesitant if I really “get” it.
Shirley

[gatorgirly]

#1174928

Hi Shirley,

Actually, I’m in the opposite boat. My TSH has been so inconsistent. I go from hyper to hypo constantly. Seems to me there has to be something else going on. My endo was the one who said six week was too soon and I should wait three months before having labs again (he said this after my August 25 labs). Good thing I pushed for six months or I could be seriously hyper two months from now. Now he wants me to have labs again in another six weeks. I’ve never gone more than six weeks between labs since my diagnosis in February 2010…crazy. And I agree, I can’t figure that study out. I’m a writer, so science is not my strong suit.

As for the OD, yes – I had both done at once. They removed a lot of orbital fat, the medial walls and the inferior walls, but left the lateral walls alone. I got lucky – no double vision.

[catstuart7]

#1174929

Hi Gatorgirly, I’m so glad your surgery was successful! I hope those nerves finish waking up soon – that you have sensation there sounds like a good sign. I’m not sure if this compares but one time at the dentist I got the right lower side anesthetized for some work, and my tongue stayed half numb for weeks! He said the numbing shot must have hit the nerve but that it would heal and it did after a while. Maybe it will work that way for you?

Hi Shirley, I hope the study will be useful with your endo – I’m planning to talk to my endo soon about all this too. Not sure how she’ll react. Here’s one more related to the low TSH issue if it will be helpful:

http://www.thyroidmanager.org/2007/02/01/long-term-tsh-suppression-in-graves-hyperthyroidism/

[gatorgirly]

#1174930

Getting a little off-topic here, but the nerve damage is extensive yet temporary. Basically all of the nerves between my eye and mouth were cut, and until the nerves regrow/heal (?), the numbness will persist. My surgeon said to be patient for up to six months. Oy!

[catstuart7]

#1174931

Hi Gatorgirly and all, I wanted to update you all on what happened when I shared those studies I linked to with my endo…..zilch. She wouldn’t even look at them and insisted I was completely wrong. I found it quite depressing.

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