Another Doctor Rant

[Libby]

I got a call today from my doctor. Apparently, my calcium, cholesterol and blood sugar are all high. They're sending me a pamphlet for a low cholesterol diet and a 'prescription to take care of the calcium'. The blood sugar, she waved off as it could have been because my fasting was off by an hour (it wasn't).

I have Hashimotos. The thyroid makes calcitonin, which lowers blood calcium levels. Cholesterol is higher in patients with uncontrolled hypothyroidism. Hemoglobin a1c is elevated in uncontrolled hypothyroidism and decreased in controlled.

Why are we treating the symptoms, without addressing the cause??? Everything is pointing to the thyroiditis not being well controlled. I can FEEL my thyroid swelling. The last time I told the doctor that, she looked at me like I was insane. But, apparently, my labs are within the 'normal range' which is wrong, as is (labs keep the upper limit on their TSH range at 4 or 5 but current recommendation from the American Association of Clinical Endocrinologists puts the upper limit for TSH at 3 - even more, studies have shown 95% of people with normal thyroid function have a level of 2.5 or less.)

I've asked for my labs to review them, but I'm going to see an endo. Made an appointment today for late April. Not incredibly happy about it. Apparently I only get to see the doctor 2 times before I'm relegated to her NP, office policy. And apparently, while everyone likes the doctor, the NP is a real witch. Ugh. I was hoping to avoid another specialist - and no endos around me have a good rep.

But being hypo on top of the POTS is just...too much. I'm always tired. Before I was diagnosed with Hashimoto's, I was sleeping 14 hours a day. I'd go to work, come home, sleep, wake up, repeat. I didn't even recognize it as a symptom bc I was so used to just being exhausted. It got a little better with the synthroid, but I don't think that synthroid alone is cutting it, especially not if my calcitonin levels are affected. I don't want osteoporosis. I don't want atherosclerosis.

They, doctors, don't seem to be on top of anything, yet I still get the impression that they want to pat me on the head and give me a lollipop when I ask educated questions instead of actually recognizing that I know what I'm talking about. I have a masters degree in oncology research and a BS in cell/developmental biology. I spent my entire academic career scouring Pub Med. Don't patronize me.

I'm terrified for anyone in my position who blindly trusts their doctor. Especially if they have MY doctor.

[sue1234]

Libby, sorry to see everything get blown off!

I was wondering, with your high calcium, why I are they not checking your PTH? You know, hyperparathyroidism can cause great tiredness, amongst other things.

[targs66]

hi Libby,

First, sorry about your experience with a useless doc. So frustrating.

I was going to say the same thing as Sue -- I barely know anything about it, but just read with interest the info on parathyroid.com, which suggests that anyone with high calcium and a range of symptoms that may include yours (esp. the fatigue) should have their parathyroid hormone levels checked. According to this site, anyone whose calcium is high and PTH is high probably is hyperparathyroid, which may be due to a parathyroid tumor (benign) which should be resolved. I'm sure with your science background it will make sense to you!!

Keep us posted.

[Libby]

Thanks for replying Sue. You make a good point. A really, really good point.

I wasn't even considering parathyroid disfunction - calcitonin immediately came to mind, especially when she mentioned sending a prescription for something, but now that I've calmed down enough to think about it, haha, hyperparathyroidism makes a lot more sense.

Why AREN'T they testing me for it?

Unless the prescription is for lab work. I'll have to see what comes in the mail tomorrow.

ETA - targs, thank you too! I'll definitely check out that site. I did a quick search a few minutes ago, but everything seemed to end in surgery so I stopped reading. Not ready to deal with that tonight, nope. haha.

[arizona girl]

Oh my gosh I just went through some of this last year. I second the parathyroid testing, elevated calcium is a lead indicator for it.

I'd had thyroid nodules for years, biopsied, labs all normal. TSH normal. However, I had many thyroid symptoms some that fit hypo and some that fit hyper. But, no you don't have thyroid disease. My cholesterol was increasing and I was gaining weight and getting very round looking in my face and neck.

I go for rheumy workup for sjogrens/lupus and they do tpo/abs to check for hashi/graves as part of their workup. They come back positive for hashi. I was already seeing a new endo for pcos/hyperinsulinemia and glucophage in the past had improved my lipid panels some, but that didn't happen two years ago when I went on glumetza. My insulin levels are much better now, but my lipids kept getting worse. My glucose is usually normal and I only had very mild elevation of a1c.

My endo took it seriously and told me that is most likely why you have elevated cholesterol and weight gain from the hashi. She also wasn't surprised that I'd had symptoms of both graves and hashi. She that happens a lot with autoimmune thyroid disease.

So we started me on synthroid, generic hurt my stomach, switched to brand. Increased up to .67 and I got more hypo symptoms. New labs showed my Free T3 was barely low normal and my free T4 was at the very top of the range. So, they were opposite ends of the range. My tsh was now very low normal and what they want with hashi. Optimal levels for fT3/FT4 should fall close together on the range, somewhere in the middle to low end.

She then prescribed T3 and my symptoms have improved. She prescribed cytomel/T3 and decided against armour thyroid as I have autoimmune disease, and she felt it might trigger another attack, which doesn't happen with cytomel. Haven't had my next round of labs yet. I know it's now working as I've lost weight, my hair stopped falling out and my fatigue and bp/hr are better.

You may need T3 added to your synthroid. TSH is the worst screening test IMHO. I think better screening tests are the Free T3/T4 and thyroid antibodies tpo/ab. It was obvious I'd had thyroid issues for years. My new naturopath also wants a RT3, but he said my treatment wouldn't change if it was positive. I'm seeing him because I am homozygous for mthfr gene defect and he's treating that with mthylfolate, methb12.

I'm sharing all this with you, so you know you aren't crazy. Doctors are missing a lot of thryoid disease and aren't testing for Ft3/4 to drive treatment. An endo that won't look at that stuff is not good, many naturopaths are better at treating thyroid issues then endo's.

Oh thyroid disease often causes pots like symptoms, and they can go away if you treat they thyroid disease right. Also if you don't get your labs, just go in and ask for them. They have to give you a free copy.

Look forward to hearing you got the right tests done.

[Libby]

Thanks for sharing AG! It's really good to hear how others have dealt w everything. It does make me feel less crazy.

My endo appt got moved up to yesterday. I had just gotten my labs in the mail the day before, so I knew what we were looking at. TSH was surprisingly good. 0.76. The last labs had it at over 4. My 88 mg dose hadn't increased but I did switch to taking levothyroxine at night, bc of my other meds and bc I'd read a paper which implied that a nighttime dose was better absorbed.

I have been tested for TPOAb, TgAb and had my T3 looked at in various labs along the way. No rhyme or reason for when, at least not that I could figure out. No measurable TPOAb, but I did have TgAb initially of 288. The last measurement from June had it down to 157. From what I've gathered, having TgAb w/o TPOAb is pretty uncommon. The National Academy of Clinical Biochemistry is recommending against testing for TgAb in areas where iodine sufficiency is the norm. For once I'm glad my doc isn't up on current issues. Haha. And as for the T3, it was only once she didn't get the free t3, so I'm not sure how useful the readings are but I was right in the middle of the normal range.

I had an ultrasound last year which indicated inflammation but no nodules. My GP refused to call it Hashi's (don't know why, that's what having the Abs and inflammation pointed to), but the Endo agreed with me that it is.

With the calcium, she also agreed that it needed to be checked out again. She spent a few minutes looking between my glucose and cholesterol, comparing new and old labs, but finally said that we would leave those to my GP for now. Both issues kept popping up in my thyroid/parathyroid research so I'm guessing she was debating the value of investigating further and decided against it. Which was ok with me, because she also ordered lab work for ionized and serum calcium, all the thyroid hormones and Abs, and for parathyroid hormone levels. If any of those come up abnormal, I'll press the issue.

My glucose was 104 with the normal range ending at 99, so prediabetes. But I'm not overweight and i don't eat a lot of sugar, so type II diabetes really shouldn't be something that I should be worrying about. My calcium wasn't terribly high -10.5 with the normal range being 8-10.2 - but I want to know now if this is an issue, not wait until I have osteoporosis and kidney stones.

tl;dr - had the appt with endo, she's checking my parathyroid, blood work will be back in a week or so.

[arizona girl]

Good to hear your getting somewhere. T3 is meaningless, the Ft3 and Ft4's are the ones that show what is actively going on in your blood.

I'm going to have to look into the tgab's, my tpo's were elevated, which is hashi. I think the tgs are for graves, but not sure. The thing about the antibody tests is my doc said once you have one positive that is enough to show thyroid autoimmunity. They can go up and down depending on if your having an active attack. She also said usually graves will lead to hashi.

You might also want to ask her about a fasting insulin test. Insulin goes wrong before the glucose, so you might have high insulin contributing to the a1c or borderline glucose. My glucose is mostly normal but I had very excessive insulin and pcos. I was also very thin when they found the pcos and then the high insulin. Steriod treatment put my weight on. You can be skinny and still have hyperinsulinemia. I treat with gluemetza to keep my insulin levels down.

[bkweavers]

I just responded to another post about thryoid issues and my advice is to keep fighting! I'm taking my daughter to another endo since I can't seem to find a good one! (We had a good one who moved.) I don't know what it is about endos but they don't listen to symptoms they just concentrate on blood test results! So frustrating!

I agree that the TSH is a worthless test and make sure they are always doing Free T3 and Free T4.

It sure seems like there are a lot of people with autonomic and thyroid illness! Good luck!

Brenda

[ladyt]

To me it seems like most docs stare blindly at the bloodresults and if it in what They considerd normal range, well Then u are heatly. It sceary me that a well aducated woman like u still gett treated badet at the doc.

I dont know where to start.

I dont know why i have pots. I have had cyst in my neck ( around th tyroid) drained for fluids. At the time i lost weight for no reson and some others stuff. But since my Labs where ok well....

Most of what u Write here is greek for me. But it Sounds like u all are whery educated on This stuff and Your own health. Very good for u, and maby it scears the docs.

[ladyt]

Treated bad.. Hmmm maby my post can bring some comic relieff:)