Need advice for endocrinology testing

[SOC]

I see an endocrinologist for a consult in 2 weeks. I hope he will be a reasonable doc to manage my hypothyroid condition, but I'd also like to have him look into other areas that might be affected by ME/CFS.

Does anyone have suggestions for tests I should ask for? Our local medical monopoly is very strict about testing, so I have to have a legitimate, by their standards, reason for the test so I'll need not just "I want this test", but "I want this test because..."

 

[Valentijn]

I see an endocrinologist for a consult in 2 weeks. I hope he will be a reasonable doc to manage my hypothyroid condition, but I'd also like to have him look into other areas that might be affected by ME/CFS.

Does anyone have suggestions for tests I should ask for? Our local medical monopoly is very strict about testing, so I have to have a legitimate, by their standards, reason for the test so I'll need not just "I want this test", but "I want this test because..."

Norepinephrine - can cause OI problems, and can be suppressed by a protein shown (in small studies thus far) to be up-regulated in ME patients after exertion. Acetylcholine is also suppressed by the same naughty protein.

 

[SOC]

Norepinephrine - can cause OI problems, and can be suppressed by a protein shown (in small studies thus far) to be up-regulated in ME patients after exertion. Acetylcholine is also suppressed by the same naughty protein.

Ah yes, thanks! I'll put those on my list.

 

[Ema]

Norepinephrine - can cause OI problems, and can be suppressed by a protein shown (in small studies thus far) to be up-regulated in ME patients after exertion. Acetylcholine is also suppressed by the same naughty protein.

Can you test for this protein?

 

[Valentijn]

Can you test for this protein?

Yes, because they did it in the study. But I don't know if any normal labs can test for it

 

[Ema]

Yes, because they did it in the study. But I don't know if any normal labs can test for it

Of course!

SOC, what are your major symptoms right now?

I can think of tests for people showing adrenal stress, tests for those struggling with weight, etc but I'm not sure what is most applicable to your situation right now.

 

[SOC]

Of course!

SOC, what are your major symptoms right now?

I can think of tests for people showing adrenal stress, tests for those struggling with weight, etc but I'm not sure what is most applicable to your situation right now.

Weight is definitely an issue. My fasting glucose is high despite a low-calorie, low/moderate carb diet. My lipids are a mess, too, despite a diet that should give me great lipid panels.

My biggest complaints right now are PEM and cognitive dysfunction. I just can't do much without crashing, even if I try to start very small and slow. For example, I can't shop anywhere bigger than a convenience store because I crash from the walking.

I used to have low temp, but I haven't checked that in a while. Maybe I should do that before I see the endocrinologist.....

 

[WillowJ]

all the best with your appointment

I don't have any advice, but I hope it goes well and you get some good help.

 

[Ema]

Weight is definitely an issue. My fasting glucose is high despite a low-calorie, low/moderate carb diet. My lipids are a mess, too, despite a diet that should give me great lipid panels.

My biggest complaints right now are PEM and cognitive dysfunction. I just can't do much without crashing, even if I try to start very small and slow. For example, I can't shop anywhere bigger than a convenience store because I crash from the walking.

I used to have low temp, but I haven't checked that in a while. Maybe I should do that before I see the endocrinologist.....

Isn't that just a pisser to eat a low calorie low carb diet and STILL struggle with weight? It makes me so mad!

Have you tested your fasting insulin? If it is high, you might think about trying Metformin. It didn't work for me, but I know it does work for a lot of people.

Also, if you google Holtorf and leptin, you will find a lot to read about elevated leptin levels being responsible for weight unable to shift. They are treating this with some novel methods, including the Byetta pen. I've not yet been able to talk my extremely open minded doctor into a Byetta pen though so you may have some resistance as well. You can test leptin though to see if it is high.

They also treat this with Wellbutrin and naltrexone...it's a higher dose of naltrexone than what we typically use in LDN, but lower than what is used for drugs. This might also be an option if you think that your dopamine is low. I think Wellbutrin is the only AD that I would consider trying these days because there doesn't seem to be much of a withdrawal syndrome.

Sex hormone labs are also an option as certainly low estrogen can cause brain fog. But again, you may encounter some resistance.

Otherwise, I'd say to just make sure to do the basics...TSH, FT4, FT3, RT3, and a full iron panel with ferritin.

Have you read the new Datis Kharrazian brain book?

I think it's pretty great. And he talks about diabetes and insulin resistance in terms of the brain as well. I found it fascinating and still hope to write a review of it before it goes out of print!

http://www.amazon.com/Isnt-Brain-Working-Revolutionary-Understanding/dp/0985690437

 

[Emootje]

If your doc is in a real good mood you could ask him to test also for serum aldosterone and plasma renin activity. High levels of aldosterone/renin/norepinephrine are seen in low blood volume diseases (such as ME/CFS). However in POTS patients there renin-angiotensin-aldosterone system can be messed up. In a Vanderbilt study they found a paradoxically low aldosterone/renin ratio in POTS patients with low blood volume.

There explanation for the low aldosterone levels:
"Aldosterone secretion is controlled at many levels: it is stimulated by angiotensin II, potassium, and hyponatremia, and acutely by the adrenocorticotropic hormone; it is inhibited by dopamine and atrial natriuretic factor (ANF). Electrolyte abnormalities are not likely to explain the low aldosterone as the sodium and potassium levels were similar in the POTS group and controls. Although we cannot exclude the possibility that there are abnormalities in ANF or increases in adrenal dopamine concentrations that could contribute to the low aldosterone state, the most likely explanation for the renin-aldosterone paradox is an inappropriately low level of angiotensin II"

 

[heapsreal]

Osmolarity blood and urine test might also help. I did this recently but don't get results for another month.

 

[aimossy]

I read in Dr Ros Vallings book that it is common for women with ME to have low estrogen SOC. you guys know way more than me that's all I can contribute.I also saw that in a gp primer booklet on ME recently

 

[Ema]

If you are on Florinef, that will interfere with aldosterone testing.

 

[SOC]

If you are on Florinef, that will interfere with aldosterone testing.

Yeah, sigh, we'd have to deal with that. Not sure I want to get through doing without the Florinef for a while, but if the testing will improve the quality of treatment, I'll do it.

 

[SOC]

Osmolarity blood and urine test might also help. I did this recently but don't get results for another month.

Is that for evaluating low blood volume and/or the amount of water in the blood?

 

[heapsreal]

Is that for evaluating low blood volume and/or the amount of water in the blood?

Im not sure but i think its basically how watered down it is or not??
SOmeone correct me if im wrong.

 

[barbc56]

I had this this test when I had hyponatremia/low sodium.

This test measures the concentration of dissolved particles, or osmolality, in your blood.
This test can help diagnose a fluid or electrolyte imbalance. Electrolytes are mineral salts that help move nutrients into your cells and waste products out of your cells Electrolytes also control your acidity and pH levels. The more dilute your blood and urine are, the lower the concentration of particles. The less water in your blood, the greater the concentration of particles. Osmolality increases when you are dehydrated and decreases when you have a fluid buildup.
Your body has a unique mechanism that controls osmolality. When osmolality increases, it triggers your body to make antidiuretic hormone (ADH). Your kidneys then conserve more water inside your body and your urine becomes more concentrated. When osmolality decreases, your body doesn't produce as much ADH, and your blood and urine become more dilute.

http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=osmolality_blood

 

[SOC]

Thanks, folks, for your help with a list of tests.

Now I'm putting together my argument for getting these tests. With my local EBM medical monopoly it's always a battle to get appropriate testing.

We all know that if you go in with a long list of symptoms, they just label you "hypochondriac" and quit listening. On the other hand, if you don't tell them the right symptoms, they won't order the tests you need. **Sigh**

So, I'm trying to craft a list of symptoms that will cause the endocrinologist to order the tests without scaring the pants off him with the full list of my ME/CFS symptoms.

I'm planning to take in the ME/CFS Primer with the section on Neuroendocrine Dysregulation highlighted. It says:

3:2 Neuroendocrine Dysregulation
One or more of the following neuroendocrine ab-normalities has been found in studies of patients with ME/CFS:
 Mild hypocortisolism and attenuated diurnal variation of cortisol
 Reduced function of the HPA axis, which can affect adrenal, gonad, and thyroid function
 Blunted DHEA response to ACTH injection de-spite normal basal levels
 Low IGF1 (somatomedin) levels and an exag-gerated growth hormone response to pyri-dostigmine
 Increased prolactin response to buspirone
 A disturbance of fluid metabolism as evidenced by low baseline levels of arginine vasopressin
 Relatively lower levels of aldosterone in pa-tients compared with controls
 Raised levels of neuropeptide Y (released in the brain and sympathetic nervous system follow-ing stress), possibly linked to the dysfunction of the HPA axis. Neuropeptide Y levels in plasma have been correlated with symptom severity

Any thoughts on any other symptoms/issue I should mention?

 

[SOC]

After all my careful planning, I still got the brush-off. All he's willing to do (and yes, I showed him the ME/CFS Primer) are TSH and FSH tests. Like we haven't been doing TSH every 3 months for ages. Yeah, that required an expensive endocrinologist to decide.

I cannot begin to tell you how much I hate my local mega medical monopoly. They charge outrageously -- their already high prices doubled in the past 6 months -- and they do nothing. What a scam!

 

[Ema]

Grrrrr.