I’m sorry to hear this. There could be all sorts of things going on and all relevant things should be checked for safety.
I have a friend whose daughter was ill a lot of the like yours, so ill she had to drop out of uni. She would get up in the morning then feel too ill to do anything half an hour later. After many fruitless tests, including allergy testing, she got referred to a Consultant immunologist who did more allergy tests from blood. Her mother had a real battle to get a referral as GP thought it was not allergies. It turned out she had many food intolerances and allergies that were raising levels of something in her blood (histamine?) and making her feel terrible. She now avoids these foods, finished uni successfully and is working. She has to be very careful about what she eats - a trace of milk can make her feel very ill. She has not had any anaphylactic reaction (fortunately).
Point is that proper blood tests and investigations need to be done by an appropriate specialist. Allergies had been dismissed as the cause of this young woman’s illness - I don’t know how - but the right consultant found differently. I am not saying that your daughter’s illness is due to allergies - it might be something else entirely - just to be sure you are dealing with an immunologist.
So leaky gut syndrome needs to be ruled out.
Conventional doctors normally don't have much to do with it.
There's a urine test," lactulose and mannitol" and also a blood test , "zonulin" to test for LGS which you can check out.
The single Cortisol result is inadequate to determine cortisol status.
Cortisol testing requires 4 x testing (morning, noon, early evening and night), because cortisol is a circadian hormone and its levels fluctuate widely.
In healthy people, cortisol levels are highest upon awakening and lowest before bedtime.
I recommend you check out biohealth labs and look into their tests.
#201A - HPA Stress Profile tests Cortisol x 4, DHEA-S.
This is FYI and not necessarily a recommendation to use their services.
The thyroid tests don't indicate Hashimoto's, however you do need Free T3, Free T4 and Reverse T3 as I mentioned before to verify thyroid function.
You need to get to the bottom of the low iron/ anemia status.
Is it low grade pulmonary edema, diet-related deficiencies or other?
She should be taken off Multivitamins. Usually the cheaper forms of many vitamins contained in them may do more harm than good. Like cyanocobalamin and folic acid or folate for example.
Normal B12 may not reflect accurately her B12 levels. It might be an indication actually of LOW bioactive B12 (methylocobalamin), specially in light of her genetic mutations.
Methylfolate and P5P (bioactive B6) supported by magnesium would also help increase her methylation.
ALT and AST levels should be monitored over time, the same with the levels of other nutrients/markers.
Negative candida IgG, IgA, IgM findings are kinda useless, when candida has suppressed the immune system, and the level of antibodies shows low.
A comprehensive stool analysis test (like the GI MAP stool analyis which may have less false negatives ) may be the way to go for this.
Beneficial gut bacteria to pathogenic bacteria ( yeast, parasites and harmful bacteria) should be in a ratio of roughly 85/15.
Allergy testing is like a shot in the dark unfortunately. Some hits and some misses....
When I had a consultation with and ENT surgeon for a health issue a number of years ago, I asked for the cause. He mentioned likely allergies but according to him, it would be pointless to pursue it, since he had little success using conventional allergy testing.
Well, lo and behold, I identified the offending substance by doing my own Dr. Coca's
Pulse Test (free down load), which was an allergy to any pork products.
The elimination of these from my diet, helped me avert repeat surgery (which otherwise would be necessary every 4-5 years, according to the ENT surgeon).
Never rely only on A1C for blood sugar issues.
Have the doctor run a full blood panel that includes fasting glucose, A1c, fructosamine, uric acid and triglycerides.
Have to go now, but I'll continue when I get a chance, possibly tomorrow.
Hit send too quickly. Want to THANK YOU for taking the time to comment. This is been tough year for her.
Thank you Barb and Niko.
Thyroglobulin AB <1
Thyroid Peroxidase AB 1
TSH = 1.05
T4 = 1.02
T3 = 2.7 Low
EBV (Epstein Barr ) Early AG IGG <5
EBVNuclear Antigen IgG 575 u/ml
EBV VCA IgG 165u/ml
EBV VCA IgM < 10
Cortisol 11 ug/dl
Prior to Iron infusion
hemoglobin 11.5 g/dl
hematocrit 35 %
Mcv 79 fl Low
Mch 26.2 PG Low
Mcvc 32.9 g/dL Low
Candida IgG, IgA, IgM - all neg
Hemogloblin A1c 5.5 -6.1 over past 2-3 years
ALT = highest its been 99
AST = highest its been is 121
She has had allergy testing 3 years ago. Nothing significant came up.
She just had a celiac blood test today.
We are considering more allergy testing as this past weekend. She randomly got a swollen throat. She also spent the prior weekend with irritated skin, lips cracked and cracks in the corners that would not heal up.
She has heterozygous SLC19A1 and FOlR2, MTHFD1, Mthfrc677T gene and is on a methlyfolate supplement
homozygous for TCN2 - takes methyl B12 but she got a high B12 result once after taking the methyl B12 ?? but we are trying to rule out if she was getting B12 from a multi at the same time.
I agree, somewhat, that treating the low T3 without treating any accompanying adrenal issue can cause further issues, but it's normal for the adrenals to kick in and try to take up the slack when the thyroid isn't working right, so quite often if low thyroid hormones are replaced, the adrenals will rebalance themselves.
Tests needed to determine Hashimoto's are Thyroid Perxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb)), along with thyroid function tests Niko recommended (Free T4, Free T3 and TSH).
Adequate iron is necessary for the conversion of Free T4, which is considered a "storage hormone" (because it isn't used directly by individual cells) to Free T3, which is the active thyroid hormone because it's used by nearly every cell in the body.
Has the diet been changed in an attempt to alter the pre-diabetic state back to normal?
Has your daughter been tested for digestive issues that may prevent absorption of nutrients or for issues such as H. Pylori or other internal parasites/"bad" bacteria or allergic reaction to foods?
In addition to Niko's suggestions have your daughter tested for a Hashimoto's Thyroiditis.
You didn't mention if they treated the low T3 or if they did further thyroid tests.
The following conditions should be ruled out:
Also Food-dependent exercise-induced anaphylaxis (It affects one–third to a half of patients with exercise-induced anaphylaxis.
--Subclinical* Pulmonary Edema (measured in mmHg for pulmonary capillary wedge pressure (PCWP).
* PCWP at 11-12 mmHg.
This finding may put a number of patients at risk, noting that Pulmonary Edema with chest imaging indicating PCWP 8-12 mmHg is considered normal (grade 0 ) Not all patients at the upper end of the "normal range, are necessarily in the clear !
These numbers are only based on statistical data and in no way guarantee absence of symptoms and disease involvement for everyone! Insist on revisiting this, in the event it was already investigated and dismissed.
---Mast Cell Activation Syndrome
-- Low Methylation (Conventional doctors know little about this and if the do they usually exercise intentional ignorance.
Easiest way to test is by getting MMA and Homocystein Tests to check Methylocobalamin B12 and Methylfolate levels.
I hope this helps, however, my comments are not intended as a substitute for medical advice.