Desperate to know what these results mean

[A.B.]

Can you tell us more about the hypoglycemia? Is it postprandial? Is it suspected or confirmed via tests? Has your daughter had a glucose tolerance test? Have you checked for thyroid antibodies? Has she had tests to see how well the adrenals and pituitary can deal with increased demands? (ACTH test and glucagon stimulation test or one of the alternatives)

 

[L_avender]

I think the only one that could lead anywhere useful medically, is cortisol, but as you say you've seen an endocrinologist I presume that things like Addison's and adrenal insufficiency have been considered and ruled out. Check out some of the specialist ME testing he mentioned. I might do the same.

She has seen three endos since 2006 and in 2013 had a CT-scan of the adrenals done. The endocrinologist said cancer was ruled out. I mentioned adrenal fatigue as at the time I wasn't aware of adrenal insufficiency. He said she definitely had signs something was not right but would like to refer her to the gynaecologist for further treatment. She has indeed PCOS but also a lot more. Prescribing the contraceptive pill - which is what they did - is to my knowledge not the answer.

 

[Sidereal]

Hi Sidereal, I posted the list of past and current supplements yesterday. I have the feeling she is not doing so well with this many supplements.

Hi Lavender, thanks. That's a heavy supplementation regime. Many people on this forum would struggle to tolerate all that. I've often found it useful to stop everything I'm taking when I'm deteriorating. This helps establish a more stable baseline.

 

[CFS_for_19_years]

Has she ever had a traumatic brain injury such as a mild concussion or worse? This can cause hypopituitarism that brings down the functioning of one or more endocrine glands.

 

[brenda]

@L_avender

Hi and welcome to PR. I would back up what others have said regarding stopping the supplements but not at once, I would quit the worst offenders for sensitive people first and the ones that are more likely to upset the liver but get off them within a week or two. I cannot take milk thistle at all even though it is supposed to be the best herbal support for the liver. Then see if she becomes stable and proceed with caution when and if needed.I only take very tiny amounts of anything and expect to see a response straight away if the supplement is needed but anyway take nothing daily.

 

[L_avender]

Can you tell us more about the hypoglycemia? Is it postprandial? Is it suspected or confirmed via tests? Has your daughter had a glucose tolerance test? Have you checked for thyroid antibodies? Has she had tests to see how well the adrenals and pituitary can deal with increased demands? (ACTH test and glucagon stimulation test or one of the alternatives)

Hi A.B.

HORMONOLOGY-BLOOD (Jan 2014)
ACTH 7,4 pmol/L
Ref values for deep frozen EDTA plasma:
Morning sample ( 8u00 - 10u00) : 2,2 - 13,2 pmol/L
Evening sample (20u00 - 22u00) : 1,3 - 6,6 pmol/L

Blood test (fasting) was taken around 4 pm but - and I don't know if that is relevant - she only woke up around 1 pm, so that would be her 'morning'. But as I say, not sure if that makes a difference.
Her hypoglecemia is suspected, not proven. She is dizzy/feels sick when she gets up, also the rest of the day, before and after meals. Difficult to pinpoint, but I would say that this is also stress related. She is constantly stressed, but the amount of stress varies from bad to extremely bad and before the extreme version comes on, it introduces itself by dizzyness, lightheadedness and sickness.

Antibodies thyroid (Jan 2014)
Anti thyroglobuline <15 E/mL (ref <60Neg)
Anti TPO <28 E/mL (ref <60Neg)
Cortisol 8 H 9.6 μg/dL (ref 7-25)
Transcortine 47 mg/L (ref 20-50)
Free cortisol (8u) - 4.2 ng/mL (ref 10-30)
Pregnenolone 3.30 μg/L (ref 3.20-14.00)
DHEA sulfate 233 μg/dL (ref 80-480)
growth hormone <0.50 ng/mL (ref 0-10)
Somatomedine-C (IGF1) 210 μg/L (ref 190-490)
IGF Bindingsproteïne 3 + 6.45 mg/L (ref 2.96-4.96)
IGFBP-3/IGF1 + 8.10 mol/mol (ref 0-4.5)


Hope this makes sence. She has not been tested to see how well the adrenals and pituitary cope and nor the glucagon stimulation or simular test.

Lavender

 

[ukxmrv]

Feeling dizzy and sick (nausea and vomiting) for me seemed to co-incide with my low cortisol times of the day. Also it happens when I have been standing as part of my POTS. When I did a TTT it was the vomiting that stopped it, also the dizziness.

 

[CFS_for_19_years]

HORMONOLOGY-BLOOD (Jan 2014)
ACTH 7,4 pmol/L
Ref values for deep frozen EDTA plasma:
Morning sample ( 8u00 - 10u00) : 2,2 - 13,2 pmol/L
Evening sample (20u00 - 22u00) : 1,3 - 6,6 pmol/L

Blood test (fasting) was taken around 4 pm but - and I don't know if that is relevant - she only woke up around 1 pm, so that would be her 'morning'. But as I say, not sure if that makes a difference.

I wouldn't know how to interpret a test that was taken at 4 p.m. that was meant to be drawn at 8 a.m. This falls into the category of a pre-analytical error - the sample was not taken under the proper circumstances. Hormone levels fluctuate quite a bit during the day, even the routine TSH has some diurnal variation that no one ever discusses.

If it were me, even if I felt like s***, I would get my ass out of bed at 7:30 a.m. for an 8 a.m. draw for a hormone level, then come back home and sleep it off. I don't know if you had to pay cash for that test or if insurance paid for it, but IMHO it was wasted money and effort.

Has she ever had an ACTH stimulation test? Does any of this sound familiar?
1. Baseline cortisol is drawn at 8 a.m. (there can be an hour or two leeway here.)
2. ACTH is injected into a vein by a nurse or doctor, not laboratory personnel.
3. Cortisol level is drawn 30 minutes after step #2.
4. Cortisol level is drawn 60 minutes after step#2. End of test.

Has she had recent weight loss? Does she have a low appetite? These are important signs of adrenal problems.

 

[A.B.]

Hope this makes sence. She has not been tested to see how well the adrenals and pituitary cope and nor the glucagon stimulation or simular test.

When cortisol is low or bordering on low the situation is ambiguous and it is necessary to do these stimulation tests to rule out adrenal insufficiency and hypopituitarism. The regular blood tests are inadequate.

But there also need to be signs and symptoms consistent with HPA axis problems to justify these tests. Fatigue, lightheadedness and dizziness are consistent but not unique to HPA axis problems.

If you can prove that hypoglycemia does occur this would be very helpful. You could do this easily with a $15 blood glucose meter and by spending some time tracking symptoms and taking regular measurements.

 

[brenda]

I think that I would get off the supplements and give it a couple of weeks to allow her condition to stablise before undertaking any more testing in case the results get screwed up.

 

[L_avender]

I wouldn't know how to interpret a test that was taken at 4 p.m. that was meant to be drawn at 8 a.m. This falls into the category of a pre-analytical error - the sample was not taken under the proper circumstances. Hormone levels fluctuate quite a bit during the day, even the routine TSH has some diurnal variation that no one ever discusses.

If it were me, even if I felt like s***, I would get my ass out of bed at 7:30 a.m. for an 8 a.m. draw for a hormone level, then come back home and sleep it off. I don't know if you had to pay cash for that test or if insurance paid for it, but IMHO it was wasted money and effort.

Has she ever had an ACTH stimulation test? Does any of this sound familiar?
1. Baseline cortisol is drawn at 8 a.m. (there can be an hour or two leeway here.)
2. ACTH is injected into a vein by a nurse or doctor, not laboratory personnel.
3. Cortisol level is drawn 30 minutes after step #2.
4. Cortisol level is drawn 60 minutes after step#2. End of test.

Has she had recent weight loss? Does she have a low appetite? These are important signs of adrenal problems.

 

[L_avender]

Just a quick remark, I have decided to join this forum and ask for opinions in addition to the treatment she is getting. As she is really very ill I am pulling out all the stops and really appreciate a lot of suggestions that have been posted here. Things we can work with, omit and test.

 

[CantThink]

If it were me, even if I felt like s***, I would get my ass out of bed at 7:30 a.m. for an 8 a.m. draw for a hormone level, then come back home and sleep it off. I don't know if you had to pay cash for that test or if insurance paid for it, but IMHO it was wasted money and effort.

I agree. I have had to get up at 5 a.m. to travel to London for specialist endocrine testing that commenced at 8 a.m. or 8.30 a.m. - it was incredibly hard and I spent a lot of time recovering, but it was worth it as otherwise the tests would have been absolutely useless to the point that the hospital wouldn't
have considered even doing it at any other time.

I agree with the other members who suggested tapering off supplements. I have found I am limited in what I can take and how many things at once. I definitely feel worse taking too many things. I would concentrate on the nutrients you can test for that she turns out to be deficient in.

 

[CantThink]

Have you looked into autonomic dysfunction? The dizziness, the nausea/sickness... I think it is worth exploring as this can be a standalone cause of extremely debilitating symptoms (plus if you add on PCOS, you'd get a whole load of symptoms from that - for example, the hair loss), or it can be part of M.E. - there's a good forum for autonomic issues called DINET.

Going back to the PCOS - this can be associated with insulin/glucose issues. If your daughter had not been tested for insulin resistance then it is something to consider. If this is a factor, it is treatable. A good forum for PCOS is SoulCysters.

I think if you have serum (not urine but blood) test results for thyroid - TSH, Free T4, Free T3 - it would be useful to look at them. With thyroid it is helpful to build up a picture by having periodic testing (e.g. every 6 months or yearly even) in the presence of some of the symptoms your daughter has, as sometimes you can spot a rising TSH or other pattern.

 

[dan062]

The over emphasis of nutrition and natural cures with our disease is in my opinion ludicrous and fruitless. We are still sick despite changing eating habits and guzzling thousands of dollars worth of supplements, all of which have been recommended by lay people, other patients or alternative practitioners who have a pet theory.

I think there's a lot of truth to this. There's a certain peace of mind (which can only help healing) that comes from simply accepting where you are, your current limitations, and acknowledging that medical testing takes time and that (unless you're a millionaire) there's not much you can do to speed it up. Many report some alleviation of symptoms simply from doing this.

I also think that the desperate search for a natural fix-all that many of us seem to go through only adds stress to the already extremely difficult situation that we are in.

Every time I come across a new supplement, theory or idea that seems promising I'm now adding it to a list rather than rushing out to buy it. When I have a few ideas in that notebook I'll buy them in a batch and test them for a couple of weeks or months. If any work, I'll be delighted, but so far I haven't found anything that's made a noticeable difference.

@L_avender I think there's a big risk to pursuing diagnostic dead-ends, which leave you with less financial resources to pursue alternate testing that you may feel is necessary later.

Having seen three endocrinologists it would seem highly unlikely (to me) that there's a straightforward endocrinological issue that would have been missed by the practitioners that you have seen. Feel free to look into the testing the other posters have mentioned but I'd look for somewhere with a multi-disciplinary team (if there is one in the Netherlands, and you can afford it) if I were in your shoes.

 

[CFS_for_19_years]

If she's lost weight recently, consider adrenal insufficiency (low cortisol). Do the ACTH stim test which I wrote about earlier.

If she's gained weight recently, consider Cushing's syndrome (high cortisol); it's often confused with PCOS.

http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/symptoms/con-20032115

Testing for Cushing's syndrome can be long and tedious. This is where a 24 hr urinary cortisol is useful, as is a midnight salivary cortisol test. Sometimes the tests have to be repeated over and over until you see a cortisol spike. The 8 a.m. salivary cortisol test and 8 a.m. serum cortisol are both useless in diagnosing Cushing's syndrome. (I just went through testing for Cushing's syndrome myself so a lot of this stuff is fresh in my mind. I'm also a retired medical technologist if that makes any difference to you.)

 

[CantThink]

If she's gained weight recently, consider Cushing's syndrome; it's often confused with PCOS.

Also -adult onset congenital adrenal hyperplasia is another differential diagnosis for PCOS. This can be tested for with a blood test. I assume the endocrinology teams your daughter has already seen will have ruled it out, but you can always double check by requesting the blood test results.

I was misdiagnosed with PCOS for many years.

 

[Sidereal]

PCOS is a diagnosis of exclusion, sometimes applied inappropriately. With those testosterone levels (assuming that the lab is legit) I would want to make sure that other causes have been ruled out.

 

[L_avender]

Have you looked into autonomic dysfunction? The dizziness, the nausea/sickness... I think it is worth exploring as this can be a standalone cause of extremely debilitating symptoms (plus if you add on PCOS, you'd get a whole load of symptoms from that - for example, the hair loss), or it can be part of M.E. - there's a good forum for autonomic issues called DINET.

Going back to the PCOS - this can be associated with insulin/glucose issues. If your daughter had not been tested for insulin resistance then it is something to consider. If this is a factor, it is treatable. A good forum for PCOS is SoulCysters.

I think if you have serum (not urine but blood) test results for thyroid - TSH, Free T4, Free T3 - it would be useful to look at them. With thyroid it is helpful to build up a picture by having periodic testing (e.g. every 6 months or yearly even) in the presence of some of the symptoms your daughter has, as sometimes you can spot a rising TSH or other pattern.

Thanks for the tips, no we haven't looked info autonomic dysfunction nor tested for insulin resistance. She certainly looses the hair on top of her head, and suffers from hirsutism as well. This was due to PCOS we were told. I will look up the fora you suggested, thanks!

Has she ever had a traumatic brain injury such as a mild concussion or worse? This can cause hypopituitarism that brings down the functioning of one or more endocrine glands.

She has had some minor injuries, concussion is one of them. I will certainly look into this. So grateful for all the tips. I will list them, do some research and take them to her practicioner.

Lavender

 

[dan062]

Autonomic dysfunction in itself is enough to make you feel totally miserable (I know because I have it), but I'd advise a bit of caution in that, as far as I know, it's rarely the primary condition (there's usually a secondary cause - often ME) and treating it will only really be addressing the symptoms (plus there aren't a whole lot of specific treatments).

A good clue to dysautonomia is that your basic bloodwork is fine (WBC, ESR, CRP) but your vitals (BP, HR) are all over the place and you feel like you're running a temperature / have the flu even though your temp is normal or sometimes even mildly hypothermic.

Perhaps the next time your daughter is feeling at her worst check all of the above (BP, heart rate and body temperature) just to get an indication of what's going on. When I do this, I find that I'm mildly hypotensive (I'm usually on the other side of it), and my body temperature is about 35C -- which is mildly hypothermic.

After a few hours, when the worst of it has worn off, my vitals are back to normal.