I was diagnosed around the beginning of March this year with hypothyroidism. I have had an inkling that something had been off for a little while, and have had some pretty startling symptoms that really got me thinking starting around January/February this year.
I am a 23 year old woman from Texas that is fed up with her situation! I am a dancer so I work my butt off and my job is very physically demanding. I need to be able to function.
Anyways, I think I have been struggling with fatigue for a long time now and it seemed so “normal” that I thought nothing of it. I typically have always liked to sleep for about 10 hours. I went through bouts of depression as a teenager, but haven’t had an episode up until recently since I was 19 or so - I will come back to that.
I am NOT pregnant, but my nipples starting lactating around January/February, which is highly strange as I have no children and am not expecting any. This is the biggest symptom that got me highly worried.
I suffered through a lot of traumatic events over the last couple years and ate a lot of fast food for awhile, and I put on a good 30 pounds all at once 2 years ago, however, for awhile now I have been heavily exercising multiple days a week and as of Tuesday, I just switched to a much healthier main diet. I thought this was normal, apparently not! I have had so much trouble shedding this weight or keeping it off! I am now right around 170 lbs!
So, I go into my community health clinic because the health care system in our country is crap right now and I don’t have heath insurance. The doctor orders as TSH test along with a bunch of other tests (I would be happy to post results). I also did this test fasting.
My TSH levels are 6.29. The range: 0.4 - 4.1.
The doctor prescribed 75 mg levothyroxine. This is where things got really bad. I knew in my bones it wouldn’t be right for me, but I tried it for 2 weeks and have been off of it for 2 weeks or so. My anxiety and depression have never been worse. It is so bad that I have hardly been able to drag myself into work, which I normally go in anywhere from 3 - 5 days a week! The bottoms of my hands and my feet have been so dry. I have developed a little bit of insomnia. I am a lot more apt to cry at stuff. The levothyroxine made things so much worse than they were before and I am trying to heal my body.
I have done a lot of research and read through a lot of your forums. I really think a NDT or T3 alone would be best for me. I am a Biochemistry graduate so I believe I can figure out the right dosage for myself (I will get my free T3 and T4 checked).
However, I would love to hear any advice and if any of you have figured out what worked for you!
Also, could anyone send me the link of where I could buy NDT or T3? Because I don’t have health insurance and don’t trust the doctors, I would like to start doing this all myself.
I just feel that my body probably converted all the T4 I was taking into reverse T3 and that is why I have been so sick. I don’t even enjoy stuff I love as much as I was.
*I recently found out my mom, grandma, and great grandmother also have thyroid issues.
Thank you all for your support!
~DancingGirl13
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DancingGirl13
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Galactorhea is a sign of excess prolactin which is a breast milk hormone, but found in low levels in our bodies all the time. This could be caused by being hypothyroid, or it may be caused by a pituitary tumour known as a prolactinoma. If your doctor/endocrinologist is aware you're experiencing this, they'd have your blood levels of prolactin tested then most likely send you for an MRI scan of your pituitary to find out the size & if medication or surgery is necessary.
I don't want to alarm you, as most pituitary tumours are not big enough to cause serious harm, but it's really important to have this checked out as soon as possible. If you do have a tumour & it's growing, it can cause visual disturbances & blindness then cut off the blood supply to the brain as the optic nerves run horizontally, & internal carotid artery run vertically past the pituitary.
There are US websites available with lots of information, too, but this is where I started reading up about my tiny problem:
For balance, especially as the OP has no insurance and may or may not be able to access MRI scanning etc, as I understand it, when galactorrhea is associated with normal ovulatory menses, the most likely cause is excessive sensitivity of the breast to normal circulating levels of prolactin. It is when galactorrhea is associated with amenorrhea, that it is most likely that the circulating prolactin level is elevated. In the case of the former, one of the most common causes is hypothyroidism. Another cause is the use of dopamine antagonist meds as they can promote prolactin secretion.
My pituitary consultant needs a chat with you as he's clueless!
I knew I had a tumour as soon as I looked up my results due to the level of prolactin elevation. Having then joined The Pituitary Foundation & met people with even more horrific tales than we read on here, I'm erring on the worse side, & hoping DancingGirl13 's prognosis is nearer your version as to the cause.
There's poor doctoring going on re. pituitary matters as well? That's not good.
I guess the only thing any of us can do here, is make suggestions, whilst hoping that the worst case scenarios can be properly ruled out by accurate testing.
One of the issues is reliance on testing, & inappropriate adherence to ranges whilst ignoring all symptoms. I banged my head against the endocrinology walls on ineptitude for two years before treating myself.
The endo I saw last year didn't have a clue about secondary hypothyroidism, & said he didn't know why my prolactin levels weren't so high anymore. Low thyroid hormones & me resolving that & my symptoms didn't seem to be something he could grasp. The one the year before decided my symptoms(of 40 years) were due to self-medicating (for 2 years). AAAAARGHH!!!
The last time I attended my local Pituitary Foundation meeting, a young woman with a macroadenoma was in terrible distress. Despite her tumour impacting on her optic nerves, carotid artery & surrounding tissue, the neurologist & eye specialist that were due to perform surgery couldn't get their sorry acts together with regard to discussing best practice for her surgery, Such arrogance when she faced blindness &/or brain damage.
I'm convinced every one of them is too dogmatic, & so far up the asperger's scale they can't understand the basic needs of us as patients, or care what they put us through.
Oh dear. how awful for that poor woman. I hope she went on to have a successful surgery.
I don't know what's going on with some Drs, whether it has always been thus, with some of them (as in every profession), or is a new phenomenon. Perhaps because some patients are becoming better informed, they're spotting the deficits in their GPs' knowledge, or maybe the training is deteriorating, who knows; but it doesn't excuse the apparently poor critical reasoning that some seem to display. On the other hand, my children and I have had some excellent care and treatment over the years, in different specialties; but sadly it's clearly not universal.
I haven't been back to the meetings as they weren't easy to get to, & I found so much more practical help when I joined this marvellous forum.
I'm sure some doctors have always been ignorant & arrogant, but used to be trained in symptom spotting, as we can do. I wonder that they are exercising too much control when they refuse to acknowledge our symptoms, & forget it's our body, not somethng they have control of.
It's good that you & your family have had good medical help, & most aspects of the NHS are marvellous. I'd like them to donate a nice proportion of endocrinology funding to TUK, & refer people here for better patient outcome & satisfaction.
Hi Pinklady60, I just looked up the symptoms for sjorgrens and I don’t believe I have that. I only have maybe one or two symptoms that would be part of that disorder.
Thank you for all of your helpful posts! I have not ruled out the possibility of a pituitary tumor, but I strongly believe that it is caused by my thyroid being out of wack.
Does anyone know where I can order T3 or NDT? I am really trying to fix it myself instead of having to fight with doctors about what they want to prescribe me. If correcting my hormones does not help, I will be seeking an MRI to check for tumors.
I'm not nearly as educated as the rest of these posters! But 75mcg seems like a large amount to start with. Maybe that's normal...I can't remember my starting dose when I first started levo. But I know in the past I've had a TSH higher than that and the most they've changed it was by 25mcg at once, then retested after 6 weeks.
Maybe you can try 25mcg for a couple weeks and see how you do with that?
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