Who has taken these tests or is familiar with them?

Type 1 and LADA
#1

I’ve made some posts here about my struggle figuring out exactly what’s going on with my health. I was seeing an Endo who was not very helpful at all. I just saw someone new (in internal medicine) who is awesome. Great listener, agrees that I shouldn’t be spiking over 200 mg/dl (which my last endo said was fine) and is actually educated in LADA and MODY (I brought up that possibility). I talked about my previous results, and he ordered quite a bit of tests that I’m not familiar with even after researching a lot of discussions here. (As far as my mixed lab results: Normal hba1c. Abnormal OGTT and c-peptide below target range. Antibodies are negative though. I’m still dealing with spikes over 200 and hypoglycemic lows in the 50s. I’m fine without medicine for now but these swings are very very burdensome to my daily life. I’m 26, low-normal BMI for reference).

Here are the tests he ordered:

  • Proinsulin
  • Insulin (wouldn’t this give the same insight as c-peptide did?)
  • Ketone bodies (looks like this is beta hydroxybutyrate aka BHB)
  • Thyroid basic panel (I did a TSH test already and was at the very bottom of normal range)
  • a CT scan

I feel like the ketone bodies are only relevant for someone experiencing dka, but I could be mistaken? I suppose the CT scan is to see if there’s any abnormalities with my pancreas? I’m concerned some of the testing is unnecessary, but I’m still going to definitely get them all done. I’m hoping someone with experience could educate me a little more on these or hear from people who got some type of diagnosis from these.

#2

I’m pretty sure that they test us all for thyroid (or, at least its common).
I’ve been tested a few times for that and its always been normal.
I think that thyroid issues are just common for diabetics (and for other groups), so they like to check.

The puzzling one that stands out is the CT scan. I don’t know why they are doing that.
I can only guess. Maybe they are looking for signs of stroke or physical brain damage.
They have given me a CT/MRI after a seizure (I also have epilepsy). Maybe they are trying to be thorough.

It will be tough to ever eliminate this, but particularly in your 20’s. Your young. You kick a lot of hormone. You prob eat a lot and are active. Is it possible that you are just kinda more sensitive to your physical body than other people and those physiological fluctuations are extra rough on you? Like, some people don’t even bat an eyelash at fluctuations like those. They wouldn’t even feel it. There’s a risk and a benefit to being that way, physiologically. There’s different risks and a benefits to being ‘sensitive.’ One of the downsides might be not feeling great all the time.

#3

On the thyroid the TSH is the simplest test, but it doesn’t tell the whole story at all. Usually a problem shows up in the TSH, so it is the first and then sometimes only test done. The TSH just tells what signal the pituitary gland is sending to the thyroid. If the thyroid isn’t working well, the pituitary sends out a higher amount of signaling. Or should.

I would assume the CT scan is going to try to rule out or find a tumor, cysts or nodules.

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#4

Does it say anywhere what part of the body will be scanned (neck, abdomen, …)? You can’t expose someone to the radiation of a full-body CT without a good cause.

#5

Abdomen.

I feel like he’s trying to be as thorough as possible.

#6

The problem with doing a TSH test for thyroid function is that falling within the lab “normal range” may not be optimal for you. Mainstream medical thyroid treatment is all about testing TSH only and often prescribing synthetic T4 (Synthroid, Levothyroxine) and calling it good. This regimen often discounts or ignores patient symptoms.

Landing outside the lab normal limits for TSH does expose the more extreme cases that need treatment but the many who measure within the normal range but not optimal and still bothered by significant symptoms are left in an unresolved situation. Their physicians, if they don’t give sufficient weight to patient-reported symptoms, lose interest, move on to their next clinical challenge and leave the patient to live with symptoms that could be treated better.

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#7

I’ve had hypothyroidism for about 20 years. At least in my case, the doctor(s) always measure TSH and free T4 and consider both for dosing decisions.

Perhaps it’s different for diagnostic screening only, but I would imagine measuring free T4 would be standard practice before a positive diagnosis was assigned.

#8

I have been a type 1 for 61 yrs and have had thyroid issues for years. If I treated it by TSH levels I would be in a world of hurt. I have found doctors who realize that the TSH levels are not the best indicator of thyroid function.
I did a lot of reading and research to find out that this was true. I worked to find doctors who were familiar with my research.
I need a large amount of thyroid in order to feel well and have energy. That causes me to have extremely low TSH levels.

For years I took natural products like Armour thyroid, and Naturethroid but the way they are being made lately has limited their effectiveness. Now I am back to the old standbys Liothyronine and Levothyroxine. I take fairly large amounts and feel fine. These pharmaceuticals are covered by my insurance, but the more natural products cost us lots of money.

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#9

Then it must be the pancreas indeed. Checking for any tumors I guess.

#10

Pro insulin is the actual protein that comes out of the pancreas. Then it breaks into two. Insulin and c peptide.
I used work in A clinical laboratory. So 8 years ago. Insulin levels were determined by c peptide levels because they are made in equal quantities.
So when a doc ordered c peptide or insulin, it was the exact same test.

That’s because the testing methods could not tell the difference between. Injected human insulin and insulin your body makes.

Maybe the tests are different now. I don’t know.
However I do know that if proinsulin is found in your blood it means you might have a tumor in your pancreas and it is producing so fast that the proinsulin is being released before it breaks up.
That is the only reason I ever heard of for running that test.

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#11

With relation to your CT:

I have type 2 diabetes, and suddenly developed hypothyroidism. They ordered a whole bunch of ultrasound images of all kinds of endocrine glands. The doctor who did them said that when they find vague endocrine disorders they often order imaging, just in case some gross lesion shows up.

Maybe the same idea?

#12

When I was diagnosed in the early 80’s, there was a long tradition of internal medicine doctors and especially endos, of probing and pushing your innards to see if any glands were enlarged. In fact that’s how they diagnosed my hypothyroidism at first (later confirmed with lab test).

The tradition of poking into your belly and glands to feel all your internal organs pretty much disappeared decades ago replaced with ultrasound and CT scans.

Today in 2020, all my docs are younger than me and they said oh yeah, they teach you that in med school but that’s old fashioned, in real life they hardly ever do that poking and prodding anymore. Still if I ask they will actually feel my thyroid etc.

While I had an endo prescribe an ultrasound for me in the 90’s (reason not obvious to me), for the most part since then it’s just been lab tests.

#13

Good luck finding doctors that will actually do more than a TSH and free T4 test. MAYBE free T3. Not to mention doing any treatment if you are in range. I have come up at the bottom of the range, or even a bit below on my T4, and have most of the symptoms of hypothyroidism,and haven’t been able to find any doctors that will run the full thyriod panel. My previous endo went as far as to say that none of the other tests matter at all and are just pseudoscience. That, and his refusal to let me try FiASP were the final nails in the coffin and I found a new endo.

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#14

I had a GP who would test everything and I also have a naturopath who specializes in treating thyroid by testing Ft3 and FT4. Keep looking, these doctors are out there.

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#15

@displayname, if you’re interested in locating a doctor who can help with thyroid issues beyond the narrow “standard of care” that traditional clinicians practice, try searching for clinicians who practice functional medicine. I agree with @Marilyn6, naturopaths are a good place to start.

Functional medicine clinicians are also tired of traditional standard of care medicine that features a quick diagnosis, drug, and “see you in six months” care.

These clinicians are all about getting to the root cause of illness. I luckily was able to find one this year, a M.D., and I’m working through my thyroid issues now. It’s not a simple issue to fix and requires many iterations and adjustments that gives full weight to patient reported symptoms.

Even once a good balance is discovered, I expect that thyroid med adjustment will be with me for the rest of my life. Like diabetes, thyroid problems are not a “fix it and forget it” affair.

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#16

So, been a T1D for 55 years and now my thyroid level was a bit low. It happens frequently to long term T1Ds. I’m taking a low dose but I had no symptoms. The one effect was that my insulin needs were raised by 10%. No matter what kind of diabetes you have, it is hard on our internal organs. Even the small delay between infusion or injection and when the insulin starts to work affects our kidneys, brains, hearts and lungs. That’s even with a “artificial pancreas” pump and CGM. A great doctor orders lots of tests.

#17

Jane, I am a bit confused as to why you are saying this to me. I have been a type 1 for 61 yrs and have had thyroid issues for at least 20 yrs. All I was saying is that it is very important to test FT3 and FT4, because just testing TSH isn’t enough. I have found doctors who are willing to do the tests I want done.

#18

We are in complete agreement. I’m just emphasizing that long term diabetes affects everything so having thyroid issues at some point is fairly typical and thyroid medication typically has a few side effects like for me it raises my bloodsugar by somewhat decreasing my insulin sensitivity and increasing my appetite.

#19

Well, I got some VERY unexpected news from the CT scan. I have a kidney problem called hydronephrosis in my left kidney. It’s severe, and not draining. Basically my right kidney is doing almost all the work right now and my left kidney is doing very little. It appears to be due to something called a UPJ obstruction (not a kidney stone) and I’ll be getting surgery for this…
Because my T1 diabetes antibody tests came back all normal, the doctor believes I’m likely not diabetic after all and that my kidney is causing my blood chemistry to be abnormal. From the rest of the testing:

Insulin production is low (insulin/proinsulin came back below range just like the c-peptide)

T3 uptake on the highest end of normal (35, on a range of 22-35). T4 total (8.2) and free T4 (2.9) normal though.

I’m really believing that my hydronephrosis has been causing this. However, I can’t find any information on a correlation with it and messed up thyroid & insulin levels. I’ll see if this corrects after surgery. I’m still avoiding sugars and high carbs because I’m still having blood sugar spikes and hypoglycemic reactions. I’ve been experiencing pretty shaky hands here and there even when my blood sugar is completely normal so I was wondering if that had to do with my thyroid. This community seems knowledgeable on thyroid levels so I’m curious to know what you think about the T3 uptake being that high with the T4 levels in range? Could that still have an impact on my hand tremors / heart palpitations and if so, is there anything I can do to treat it? (aside from thyroid medication which I doubt I qualify for)