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Old 05-24-2013, 06:43 AM   #1
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Officially hypothyroid now

Hi everyone,

I haven't posted in a while but wanted to give an update now that some things have changed... no questions at this time, but maybe my info could be useful to someone else in the future.

I forget where I left off with my last post, but it was probably after my second visit with the endocrinologist. He saw my sky-high prolactin levels and ordered a brain/pituitary MRI to look for a tumor. He also prescribed 2.5mg of bromocriptine to help bring prolactin down and shrink the tumor, if there was one. But nothing abnormal was found on the MRI, which I heard over the phone from a nurse rather than directly from the doctor, and I interpreted that as "probably no tumor" and that there was probably some other oddball cause for my high prolactin.

Anyway, after taking bromocriptine for 2 months, I had some more blood work done and had my next appointment with the endo earlier this week. My experience with the bromocriptine had been basically fine (no side effects) but I hadn't noticed much of an improvement in the symptoms that brought me to the endo in the first place. Really, all I can say is that I no longer felt an overpowering need to nap in the afternoon, and some of the brain fog had gone away. My weight had actually gone up a few pounds, and my hair falling out had worsened. But in full disclosure, I had also decided to change my diet shortly after my first endo appointment... he had made the comment that 20-25 grams of carbs per day is "really low" and I should probably up my protein some, too. He was not advocating a "high" carb diet, but something more than 25 grams per day, along with upping protein to around 100 grams a day.

So, during the 2 months between the appointments, I increased carbs and protein and naturally had to decrease fat, because I was still trying to watch calories. On average, I'd say I am getting 70-80 net carbs a day, close to 100 grams of protein (many days, still less than that), and not sure about fat. That website and app that cannot be named here tells me I should get about 1500 calories a day to be at a mild deficit, and then it allows for more calories based on how much is burned during my workouts (5-6 days a week). I also bought an activity tracking device (can I name it here? both syllables rhyme with "hit") that has encouraged me to move around more during the day in addition to my regularly scheduled workouts.

In spite of all that, I managed to gain somewhere around 5-ish pounds during the two months, and I had fought SO HARD to lose that during the previous six months of extremely low carb, moderate protein, high fat dieting. Again, I should add that I do a lot of strength workouts that tend to make me sore for a day or two afterwards, and I know that can increase weight.

On to the blood work, etc: my latest results indicated that my prolactin had gone down but nowhere near normal. It was 191, now it's 137 (normal range cuts off at 22). Even more interestingly, my Free T4 had now officially (cue the trumpets) dropped below the lab range. I can remember the number is .55, but I didn't memorize the lab range (I can add that later if anyone wants to know). Get this, my TSH has done nothing but drop substantially since the first time it was tested in August of last year. It's now like .68, if I remember correctly. And, my Free T3 is still on the bottom end of the lab range but slightly higher than last time it was tested. I know not having the lab ranges is useless, but last time it was 2.2 and now it's 2.8. I think the low-end cut off was 2.0 and high end was maybe 4??

My endo's reaction to all this was to double my bromocriptine to 5mg daily and (cue more trumpets) prescribe 50mcg a day of Synthroid! So now, I can finally say I'm "hypothyroid" although it's (I guess) called secondary hypothyroidism rather than primary, since it's clearly due to a pituitary problem rather than directly the thyroid. One last interesting comment from the endo was that he still says with 99% confidence that there's a tumor, but it just didn't show up on the MRI. There's no other good reason for my prolactin to have gone that high. Regardless, taking the bromocriptine is the treatment, tumor or no tumor, so it doesn't really matter.

So, ideally the bromocriptine will gradually bring my prolactin down to normal levels and at the same time, hopefully, get the thyroid numbers to where they should be. The Synthroid could just be a temporary measure to alleviate hypothyroid symptoms, while the bromocriptine could be a lifelong treatment to keep prolactin suppressed and prevent regrowth of the "tumor." I know that for many people, Synthroid is not the best treatment, but since my free T4 was the only number out of range, I'm not bothered by the idea of taking it for a while to see what happens. Relatively, my free T3 is "higher" than free T4 based on their respective positions in the lab range. So maybe I have no major problem converting T4 to T3. We'll see where I am in two more months, when I get blood drawn again and see my endo.

Whew...long post! No time to go back and proofread this time, so I apologize for any errors or confusing bits. Thanks for reading!
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Old 05-24-2013, 09:10 AM   #2
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Join Date: May 2012
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FT3 is 'considered normal by most thyroid doctors' when it is above half of lab range and not before. So...um....you 'look like' you are not converting. I can't remember...did you have a TPO antibodied test??? Cuz a lot of time Hashimoto's is found WITH pit problems. Oh, and FT4 is usually 'considered normal by most thyroid doctors' when it is halfway of lab range or slightly UNDER...yet doctors who only DO T4 like to see it high in range, they then tend to scoff at FT3, and call it 'good at anywhere in range'.

Just saying...have lots of pit tumors, Hashi's, and other endocrine ailments through my family line.
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