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Avatar universal

Frustrated, tired, and angry

This is long, so thank you in advance!

I'm very tired and frustrated with fighting with doctors, and I'm looking for some advice on how to proceed. First, though, a little background.

In 1999, I was diagnosed with thyroid cancer. I had a total thyroidectomy and a partial para-thyroidectomy, but what para-thyroids were left never recovered. Following the surgery I had a big dose of radioactive iodine. The following 2 years, I had total body scans to look for any signs of thyroid tissue. Over recent years I've had a few ultrasounds of my neck. Everything has come back negative.

My issue is that I don't fall in the "normal" range for TSH levels, I never have. A few years back, I had a doctor that decided the levels were too high, and increased my medicine. I immediately started putting on weight, and my depression spiraled out of control. He put me on anti-depressants, the depression continued to spiral, the weight gain was immense, and I was having every possible symptom of hypothyroidism. It got to the point that I physically could not make it further than from the bedroom to the couch, or the couch to the car. I had to sleep after 6 hours of being awake, maximum, and it didn't matter if I was driving at the time. My concentration levels got so bad that I couldn't do even the simplest of tasks. I can't remember exactly what my dosage was at the time, but I think it was 150mcg of levoxyl per day.

My doctors would not listen to me or take my concerns seriously. They thought I wanted my meds to be decreased to go into hyperthyroidism just to lose weight! I finally saw no choice but to take my health into my own hands. I decreased my levoxyl to 75mcg per day (half a pill). My energy levels started to rise, my weight plateaued, I could concentrate, and I wasn't sleeping all day! I felt reborn!

After a month or so, I started to feel twitchy, and recognized that I was swinging into hyperthyroidism. So, I tried taking 75mcg 4 days a week and 150mcg 3 days a week. It helped, but I still had symptoms I wasn't happy with, so I increased to 75mcg 3 days a week and 150mcg 4 days a week and we have a winner! I've been on that dose for about 2 years now, and feel great.

Recently, I changed insurance companies, which means I had to change doctors. My doctor ordered blood tests on July 9, 2015:
T4- 6.4 (ref 4.8-11.7)
TSH- 15.30 (ref 0.36-3.74)

The TSH is elevated, but since I'm finally feeling good, I'm ok with it. He, like every other doctor I've seen, could not trust the lack of symptoms, so referred me to an endocrinologist. I went to see her on Monday, August 10th, and although she argued with me and accused me of wanting to be hyperthyroid to lose weight, I thought maybe she listened.

Silly me. She ordered tests:
Free T4- .97 (ref 0.76-1.46)
Sensitive TSH- 38.1 (ref 0.3-4.2)

Again, the level is quite high, but I have no symptoms of hyperthyroidism! My blood pressure on Monday was 120/85, pulse 66, temp 97.6, weight 199lb (90.5kg)- which has been static for over a year, and my metabolic levels are all in the appropriate ranges- and those are just the measurable results. She obviously didn't care about the symptoms, or lack thereof that I reported to her. I need to book an ultrasound, but I'm confident it will be negative, just like all the other ones.

She decided to up my dose (75mcg 3x week, 150 4x a week) to 175mcg daily. That is a huge increase! 150mcg daily nearly killed me.

I would like to note that the Sensitive TSH test result did not show on my test results, I had to email her for that because I was so concerned about the dramatic increase to my medication. She emailed me back and said, "Free T4 is normal but low normal and fluctuates during the day. TSH is more reliable." I've always been told that comparing T4 and T3 levels are much more reliable with a patient with known atypical TSH levels. Can I really trust this doctor to have my best health in mind?

How do I fight this? Do I give up and take the prescription and let this doctor kill me? Do I give up and continue to adjust my own medication and ignore doctors altogether? Do I start shouting at the top of my lungs that I'm not ok being treated like a number and hope that the corrupt system somehow changes? What are my realistic options/chances for success?

I'd love to hear from others who have had atypical results ignored and basically been called a liar by health professionals.

If you've made it all the way through, thank you. You can probably tell how much this has destroyed my composure. I'm frustrated and angry! I'm tired of fighting this losing battle every time I need my prescription renewed.
10 Responses
Avatar universal
First, we have to get some basic concepts straight.  TSH is counterintuitive.  The higher it is the more hypo (low functioning) you are, and the lower it is the more hyper (high functioning) you are.  When you lower your dose of levo, you are apt to become more hypo and vice versa.  

Theoretically at least, the higher your TSH, the harder it would be to lose weight, the lower, the easier.

Symptoms, FT3 level, FT4 level and TSH, are in that order of importance.  However, doctors in med school that TSH is the gold standard in thyroid testing (it's not), and changing that perception is closely akin to changing the world.

Your current FT4 is a little on the low side, but if you feel well, that's probably just where your body likes it.

I have a pituitary issue (pituitary resistance to thyroid hormone) that keeps my TSH around 20.0 all the time.  My FT3 and FT4 are both on the low side, but I'm asymptomatic, so we ignore all that.

I'm going to stop here for the moment to see if what I've said so far changes your questions at all.  



Avatar universal
I'm so sorry, I got your message, and didn't even know this comment was here! I was getting depressed that it seemed another dead end.

But now I'm just even more confused. My doctor is claiming that since my TSH is so radically high, it means I'm hyper and she wants to increase my levoxyl to bring me more hypo. The issue I have is that when taking 150mcg a day I felt like death, and she wants to put me up to 175mcg per day.

This morning there were 2 more test results added:

Thyroglobulin anitbody screen <1.8 (ref <4.0)
Thyroglobulin tumor marker 0.1 (flagged as high, but no ref value)

I don't get it. I really don't. It all seems hopeless and I'm starting to really freak out.
Avatar universal
No, high TSH means you are hypo.  TSH is the hormone your pituitary sends out to tell your thyroid to produce more thyroid hormone.  So, your pituitary checks your hormone levels, and if it thinks they're too low, it sends out some TSH.  Every time your thyroid hormone is too low, a little TSH goes out, which makes it rise.  The more Levoxyl you take, the less hypo you become.  Is this a new doctor?  

You're not taking even 150 mcg a day right now, are you?  What were your symptoms at 150 mcg?

After thyroid cancer, they usually want to keep your TSH pretty low.  Otherwise, it could stimulate regrowth of thyroid tissue.
Avatar universal
When I was on 150mcg per day, I put on 20+ pounds in less than 6 months, my normally strong nails were flaking, chipping, and breaking, my hair was like straw, I could not physically stay awake for more than 6 hours, any exercise resulted in being totally drained of energy, my body always hurt, I couldn't concentrate, I was always cold, and my periods were so heavy and painful that I would be out of action for the first few days and soaking through an overnight pad in 4 hours- literally.

I lowered the amount of levoxyl to 150mcg 4x per week and 75mcg 3x per week, and the symptoms stopped. (Actually, I went to 75mcg per day and had racing heart and hand tremors so I upped it until I found a precarious balance.) So when my doctor said she wanted to up me to 175mcg per day, that's a terrifying thought!
Avatar universal
First of all, let me say that I agree with you that increasing from your current dose (150 mcg x4 and 75 mcg x3) to 175 mcg per day is a huge increase.  That's close to 60 mcg per day, and dose changes are typically in the 12.5-25 mcg range.

How you feel is all important.  If you've done well on your current dose for two years and still feel well on it, there's no way I'd allow my doctor to up my dose that much just to make TSH "right".  My only reservation in saying that is that you've had thyroid cancer.  After a TT and RAI, TSH is typically kept very low so that thyroid tissue doesn't grow back.  You'd have to discuss with your doctor how much your risk of recurrence increases when your TSH isn't suppressed.

Do you have lab history?  If you do, I'd like to see it 1) when you were on 150 mcg, and 2) for the past two years when you've been feeling well.  Has anyone been testing FT3?  Please include reference ranges from your lab reports as they change from lab to lab and sometimes even change over time at the same lab.

You react to increases and decreases in meds, it would appear, completely opposite of anyone I've ever encountered.  You felt hypo at 150 mcg, decreased your dose to 75 mcg and felt hyper.  This is a totally abnormal reaction to a decrease of that magnitude.  So, something else must be going on at the higher dose to make you feel hypo.  The answer to that could very well be in your FT3 level at the time.  (I hope someone's been testing that.)

Also, when you went from 150 mcg to 75 mcg per day, then to 150 x 4 and 75 x 3, over what period of time did that occur?  I don't care about dates, just how long it took to make those changes.  
Avatar universal
I was very concerned that she jumped such a huge amount. At the moment, I'm thinking of going back to 150mcg per day, and recording symptoms.

Unfortunately, we've moved several times over recent years, and despite trying, our medical records are missing. It's just another frustration. For years, TSH has been the only number the doctors have cared about, even when I was feeling so hypo. We're still fighting to get the medical history sent to us.

When I made the changes to my meds, it was over the period of several months. I went to 75mcg and stayed at that level for several weeks. It was a relief to feel functional again! I can't remember how long it was until the hyperthyroid symptoms started, but I'm sure it was a month or more. When they did, I increased to 75mcg 4x per week, and 150mcg 3x per week. Again, I continued that level for several weeks (around a month or more). Symptoms lessened, but were still there, so that's when I increased to my current level.

My husband and I have been researching this like mad, and although we can't explain my abnormal reaction to the meds, I'd really like to test my pituitary gland to see if that's what's causing the weird spike in TSH levels. However, when I emailed my GP to ask about it, he responded that he knows of no such test and that I need to see the endo. She's unwilling to listen to my concerns. Not really sure what my next move should be.
Avatar universal
I have pituitary resistance to thyroid hormone (PRTH).  My pituitary lacks the enzyme that converts T4 to T3 (the pituitary converts its own for itself, separate from peripheral conversion), so it's starved for T3 and thinks the rest of my body is as well, but my peripheral conversion is fine.  PRTH has never been "proven" with a test; it's a working clinical theory based on the fact that I went hyper with a TSH around 20.0.  It works for me.  I feel well regardless of my TSH.  I have a cooperative endo.

PRTH is a genetic mutation, and I'm sure there is a test for it.  I've never explored it because I'm perfectly happy with the theory.

Let me talk to someone I know in TX and get back to you.
Avatar universal
Makes sense. I think I'm going to try to keep putting pressure on my GP to run the blood tests I know I need- FT3, FT4, metabolic, and even TSH. There's obviously something that's not "normal" going on, and it would be nice to see if we can isolate the issue.

Reading up on some of the symptoms that can occur with different tumors on the pituitary gland, I have a lot of the symptoms for Cushing's Disease. It's just that a lot of them can be caused by other things, too, so it's hard to say for sure.
Avatar universal
Yes, I was going to say that they first thing you need to do is find out what FT3 is doing.  If you can get your doctor to run it, RT3 (reverse T3) would also be interesting to see.  Most mainstream doctors think RT3 is just this side of witch doctoring, so it might not be an easy feat.  You want FT3 and RT3 rested on the same blood draw because it's the ratio of one to the other that's important.  If your doctor won't test RT3, you can order it from an online lab, no doctor involved.

Here are some links to articles about RTH (or THR, thyroid hormone resistance).  See if you think anything fits.  Bear in mind that all of these are mostly about resistance, not pituitary resistance (although it's mentioned).  Also keep in mind that you will keep reading that FT4 and TSH are both elevated.  That's if you have a functioning thyroid.  You don't due to surgery, and I don't due to Hashi's killing it, so of course, FT4 comes completely from our meds and is only as high as meds allow.  So, ignore that part and concentrate on what the syndrome does to TSH.

http://www.ncbi.nlm.nih.gov/pubmed/8475937

https://en.wikipedia.org/wiki/Thyroid_hormone_resistance

http://press.endocrine.org/doi/full/10.1210/jcem.84.2.5534

Have you checked out RT3 dominance?  A brief intro:  T4 floats around in your blood stream until there's demand for thyroid hormone.  There are only two ways the body can get rid of T4, convert it to FT3 or RT3.  RT3 is inert.  It's the body's way of controlling FT3 levels.  So, when FT4 gets very high (which I'm thinking might have been the case when you were on 150mcg), the body starts converting more T4 to RT3 than to FT3.  So, the result can be that, even with high FT4 level, your FT3 level is low, and you feel hypo.  You lower your T4 intake (like you did to 75 mcg), and you go back to a "normal" production of FT3 and RT3.  Your FT3 actually goes up.

Anyway, RT3 dominance is controversial.  Many doctors simply don't "believe in" it.  

http://tiredthyroid.com/rt3.html

I talked to my contact in TX, and it turns out the doctor who ordered his genetic testing moved from there to OR (which is coincidentally where I live).
Avatar universal
That is interesting and worth further investigation. I asked my doctor to order blood tests, but haven't heard back. I'm not sure why. Online blood tests might be necessary if my doctor won't play nice, but they're expensive. Not sure why I pay for medical insurance when I can't even use it!
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