Anyone with any suggestions I would greatly appreciate. Here is my story -
10 months ago, I start having extreme anxiety , crying spells, achy muscles, migraine, bowel movements 8-10x per day, extremely hungry , fatigue. I went to my obgyn thinking its hormonal due to the crying which isnt usual for me. Everything came back ok except he could tell from the labs I wasnt ovulating and my prolactin came back high, 38 (0-26) . He thought I may have a pituitary tumor so sent me for a mri. Mri shows a tiny 2 mm anedoma, and I am sent to a endocrinologist for treatment.
There is a 3 month wait, in the meantime I am still having the same symptoms and am extremely dizzy and at times a little naseaus. I finally see the endo and he said we'll do tests and I'll see you in 4 weeks. Wont answer any questions about the tumor. When I finally see him , he said you have viral thyroidits . My TSH is still normal .78 (.5-5.5) and I have negative antibodies so he runs no other tests. I see him 1x every 4 weeks for the next 6 months to monitor the prolactin, each time I go in, my prolactin is back in the high end of normal range , then the next month it is high , etc. Last month he decides to do another mri to see if it is growing and low and behold there is NO tumor, but my prolactin is still high. I ask him why and he doesnt know said its not dangerous to have high prolactin so it doesnt really matter. I should've switched dr's then.. I am still having these episodes, but now I feel different symptoms cold , fatigue muscle aches, constipated, heart hurts, depressed, I have low blood pressure 87/57, when it used to run normal, and now I have a heart murmur when I never did before. When I saw the cardiologist he said it was something with the outtake valves and is common with thyroid disease .,I had an appt with the endo today , My TSh is now 2.44 (.5-5.5) but he will not test any other like t3 or t4. and at this point i am desparete . He said since my tsh is normal , there is no sense in testing anything else. He said since my bloodwork is normal , I will need to go elsewhere because my symptoms arent anything having to do with what he specializes in. I said but you diagnosed me with thyroiditis , how can you not say this is related, He said people who get thyroidits dont feel ill. Then I asked about the raised prolactin. I told him I had read somewhere that one of the caused of raised prolactin could be hypothyoidism. He said not to be rude but you must be having alot of sex and that is why it is high. I couldnot believe he said this. I was so mad and hurt!! I will never go back to him again! Can someone give me some input ? I know I will need other tests,like free t3 and t4 but should viral thyroiditis last this long? I am only 31 and I feel like im 80!! also how much fluctuation is normal for a TSH. Mine went from .78 to 2.44 . My endo said this is normal.....
i know its hard to start over with someone else when not feeling well, but please start shopping around for another doc. i encourage people to keep looking until they find the right one.
i'm sorry but i know nothing about prolactin. i am not sure if your jump in tsh is 'normal' but judging from your symptoms you've definitely got something going on and a doc shouldnt be going by numbers alone when you're exhibiting so many unpleasant symptoms. i also cant believe he never checked your free t3 and free t4. its such standard testing for crying out loud. those numbers should be checked. and sometimes people can be atypical and be hyper or hypo without the numbers reflecting it, but these levels should be checked anyways.
find another doc! see if your pcp will write you a blood order for the free levels in the meantime if you can. your symptoms sound like you could be hypo.
Hang in there YMartinez, Scoop is right. Another doctor might be a good idea. Other members of this board have been able to find doctors that treat the person and not just the blood results... it gives me hope that I'll find such help too! I'm sorry for everything you are going through. My symptoms seem to 'shift' too and it can really make you feel like you are losing your mind. If you don't mind me asking, do you know what part, or what type of blood test you had that showed you weren't ovulating. I tried to tell my endo that I didn't think I was. He said, "How can you tell?" I explained that I can usually tell based on changes in mind body... < No need to be too detailed here > I didn't realize there was a blood test that could confirm this?
thanks for your replies.
This board has been so much help . I am definately going to see another doctor. It is just hard thinking about starting from square one(although I guess I never got anywhere in the first place)
Teeeb- My doctor checked my FSh and LH , the ratio should be 1.1 to 1, and mine was like 12 to 1. He said this is evidence of annovulation???..
Does anyone else's symptoms fluctuate to where you have good weeks and bad weeks? or do most people suffering from thryoid problems feel the same all of the time?
Yes, symptoms can fluctuate... as can TSH. Your differences in TSH are relatively minor, because it can fluctuate that much in a single day; but sustained readings above 2 to 2.5 merit a trial of thyroid hormone.
You need more testing. You need another TSH, the free portions of T4/T3 measured, and a test for thyroid antibodies - TPO and Tg. Push hard for these specific tests... not "total" T4/T3, not free T4 index, not T3 uptake. None of those is as good as free T4/T3, and you definitely need the antibodies.
Keep that appt with the endo. Hopefully he knows what he's doing more than the quack you've been seeing.
Don't give up hope.