Since the last quarter of last year I have been more or less continually exhausted. I will have periods of up to three weeks were I feel relatively well - although I still collapse about 3 pm. At the moment I'm recovering from one of my 'can't get off the couch' moments. After two days of 'can't even think' I'm now at the 'teary recovery' stage. I feel fine but as soon as I get up and start doing anything I have to lie down again or my eyes just start tearing up. Hopefully I'll be up and going again in a couple of days.
I have such a range of weird and wonderful symptoms that a month ago I had a whole raft of tests. They results are mostly normal which seems to fit well with the prevailing theory that it's 'all in my head'.
The test result that confuses me most is:
SYNACTHEN TEST
Basal Reference range
09:45 191 nmol/L 0800h 250-800
10:15 458 nmol/L
I went to see the after hours doctor when I was having one of my 'teary' days and she told me that it was all perfectly normal. I've just had the results sent to me and it says that anything under 550 is abnormal. Was she right or should I be concerned?
The other results that weren't in the normal range were:
IgG: 6.9 g/L ( 7.0 - 16.0 ) Low Level
Fructose breath test: very positive very fast - I'm now avoiding that
Lactose breath test: this was normal but I had diarrhea for two days after it
Coeliac blood test: I was unable to do this one properly as eating flour gave me; tingly tongue, dizziness, diarrhea
I have to wait four more days to see the specialist so I'm keen to hear from anyone as to what they think of my Synacthen test results. I found the after hours doctor's "it's all in your head" very upsetting.
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Philippa_R
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It is not all in your head. If the SST produces a basal cortisol level result that is less than 83nmol/L, that result reliably indicates cortisol insufficiency. Equally, if the basal level is above 497 nmol/L, the test shows there is no problem with cortisol. However, there is a grey area between these two figures where caution has to be exercised, because hypocortisolism caused by pituitary dysfunction can be hard to detect. This point is made in an article by Peter J Snyder MD on the Wolters Kluwer Health website entitled “Diagnosis of hypopituitarism.” He says “A serum cortisol value of >83 nmol/L but <497 nmol/L that is persistent on repeat determination is an indication to evaluate ACTH reserve.” uptodate.com/contents/diagn... Your result was clearly in this questionable range. It doesn't matter that your adrenal glands responded to the test by quadrupling the cortisol - that just shows your adrenal glands are OK, but it doesn't tell you what's happening in your pituitary. You should strongly push for the insulin stress test or the glucagon stimulation test because these will test whether your pituitary is producing enough ACTH to stimulate your adrenals. Got to go now, but may come back to you on the other low test result.
It is slightly below but at least it doubled which is positive. Mine only goes up by 100. You definitely need to see the endo as I think you may need hydrocortisone. I am always told end reading should be at least 500-550. Mine is usually 320.
Hi When you say that TSH, T4 and FT3 are normal.,is that by looking at the results, yourself on a print out, or GP telling you?There normal is often not ours.
As regards the rest, as said the rest, excellent advice. You need to find a really good Endo, research etc. , do not go by GP`s recommendation, unless, very sure. Then phone their sec and check that the Endo likes T3 etc, or just goes by TSH, any thing else you can think of. Only then ask the GP to refer you.
As regards the Adrenal glands, ask the Endo to test this. The only reliable test according to my Endo, and in my experience is one the Endo can do, may be with a bit of prompting. 24 hour urine collection, cortisone tablet prescribed for mid night and then a blood test 9 am.
The only option is to do something, yourself, to feel better even if it means being firm with docs.Your health is important.
My view - start with digestion...clearly you have issues there and there is a clear link between stress and digestive disorders. I know someone who can help.
Further to my last message when you say fructose and lactose test do you mean as part of an intestinal permeability test? If so you need to go onto a diet that will help heal intestinal permeability. Again I know where you can find these and help for digestive issues.
The Synacthen Test only shows up addisions disease (under active adrenals) or Cushings Disease ( Over active Adrenals) I had that test when I was extremely Ill, as always the tests come back all was OK. Four weeks later I took the ASI Saliva test which did show my adrenals were not performing as they should. Have you had this test done? A fantastic book about adrenal Fatigue is called are you tired and wired? ( I hired this from the Library) - could be a real help if your adrenals are under active.
A cortisol level of 191 at 9.45 am IS FAR FROM NORMAL . It should be 600 - 700 at 9am . Both my boys have Addisons disease & I am in early stages of it too .
My cortisol level at 9am was 186 - that is clearly a marker for me to have Addisons ...
If you are producing cortisol ( which you are ) Then it is very easy to spike your own results upwards if you are anxious when you have the blood test & you are still producing some cortisol in response to stress .
Thanks for your reply. I appreciate you taking the time to write. It must be very difficult for you having both your boys with Addisons. Are they still at home?
I managed to get an appointment with an Endo and she wasn't dismissive. She has ordered more tests and says Addison's is a possibility.
Have you been given any ideas as to how to delay the worsening of Addison's?
The SST needs to be done low dose, not high dose. Please watch this video about hypoadrenalism:
Also, you say you've had lots of tests done, maybe you should post the results, lab ranges are very wide and you can often see clues to illness even though you fall in the normal range. x
Thanks for sending this link. I found it very helpful. It seems that the B12 I have been taking for several years has been a good idea. I'm kinda hoping my latest discovery of Mum’s Restore for Stress and Sleep (which contains, Holey Basil, Peony, Ashwagandha, Olive fruit Calcium hydrogen phosphate, Carnauba wax, cellulose – microcrystalline, Magnesium stearate, Silica – colloidal) will help with some of my other symptoms. If I don't take it I end up on the couch. But even if I do I can really only work for half a day.
Thank you all for your quick responses. I'm so pleased to hear you say it's not in my head. Although it does seem a bit silly to 'want' to be sick. Actually I just want to find a way to function without having to have so many 'couch' days that I'm in danger of losing my job.
The pituitary problem does sound a reasonable thought as I have been getting a 'weird' headache at the back of my neck where my spine and head meet. Sometimes when a plane is landing I feel as though my head is going to burst. However, I also get sharp pains in my lower back as well. Actually it's got to the stage where I feel as though it's a case of 'you name it I've got it!'
My specialist rang me last night to say that it was no longer his field (gastroenterology) and was referring me to an endocrinologist. The earliest appointment I can get is next Wednesday so I guess I'm back to waiting again. After hearing your opinions about being retested and doing a bit of reading I'm thinking that I should stop taking the HRT I just started taking last Friday for atrophy. Some of the literature seems to imply that HRT could skew the results. Does anyone have any thoughts?
In an attempt to self heal I have been taking a LOT of vitamins;
a vit B combination pill;
organic iron (I have a sluggish bowel so can't eat meat);
flaxseed oil;
vit C 1000 mg;
Iodine spray (which gave me a new lease on life for a while);
Magnesium, Glocosamine (I used to ache all the time before taking these two);
B1 (insects just love to bite me)
and a new one which if I don't take it I end up on the couch it's called:Mum’s Restore for Stress and Sleep and contains, Holey Basil, Peony, Ashwagandha, Olive fruit Calcium hydrogen phosphate, Carnauba wax, cellulose – microcrystalline, Magnesium stearate, Silica – colloidal
In the meantime here are the results of the tests he gave me:
Elastase 1: 378 ug/g stool
Haemoglobin: 138 g/L ( 115 - 155 )
Haematocrit: 0.40 Ratio ( 0.35 - 0.46 )
MCV: 90 fL ( 80 - 99 )
MCH: 31 pg ( 27 - 33 )
Platelets: 230 x10e9/L ( 150 - 400 )
WBC: 4.9 x10e9/L ( 4.0 - 11.0 )
Neutrophils: 2.9 x10e9/L ( 1.9 - 7.5 )
Lymphocytes: 1.6 x10e9/L ( 1.0 - 4.0 )
Monocytes: 0.3 x10e9/L ( 0.2 - 1.0 )
Eosinophils: 0.1 x10e9/L ( < 0.6 )
Basophils: 0.0 x10e9/L ( < 0.3 )
anti TTG IgA: 3 Units ( 0 - 20 )
IgA: 1.2 g/L ( 0.6 - 4.0 )
Antinuclear Ab: Negative
Mitochondrial Ab: Negative
Smooth Muscle Abs: Negative
Parietal Cell Ab: Negative
Validated by ANH, MLSci
IgG: 6.9 g/L ( 7.0 - 16.0 ) LL
IgA: 1.2 g/L ( 0.6 - 4.0 )
IgM: 1.2 g/L ( 0.4 - 2.5 )
HbA1c: 34 mmol/mol ( 20 - 40 )
Ferritin: 199 ug/L ( 20 - 350 )
Free T4: 15 pmol/L ( 10 - 24 )
TSH: 1.8 mIU/L ( 0.40 - 4.00 )
Consistent with euthyroidism.
C-Reactive Protein: <1 mg/L ( < 5 )
Magnesium: 0.9 mmol/L ( 0.6 - 1.2 )
Calcium: 2.4 mmol/L ( 2.2 - 2.6 )
Phosphate: 1.1 mmol/L ( 0.8 - 1.5 )
Albumin: 45 g/L ( 35 - 50 )
Adjusted Calcium: 2.3 mmol/L ( 2.2 - 2.6 )
Total Bilirubin: 4 umol/L ( 2 - 20 )
Conjugated Bilirubin: 2 umol/L ( < 6 )
Alk. Phosphatase: 72 U/L ( 30 - 150 )
GGT: 24 U/L ( 10 - 35 )
ALT: 29 U/l ( 0 - 30 )
AST: 42 U/L ( 10 - 50 )
Total Protein: 68 g/L ( 64 - 83 )
Albumin: 45 g/L ( 35 - 50 )
Serum Globulin: 23 g/L ( 18 - 36 )
Creatinine: 66 umol/L ( 45 - 90 )
eGFR: 91 mL/min/1.73m2
CK: 91 U/L ( 30 - 180 )
Serum B12: 419 pmol/L ( 170 - 600 )
Serum Folate: 32.3 nmol/L ( > 8.0 )
I'd be grateful for any thoughts as it's 9 days till I can see the new specialist which at the moment seems like a long time.
Thank you for getting back to me. Fortunately I was able to get a cancellation appointment with an Endo on Tuesday. Fortunately she took my symptoms seriously and has sent me off for pituitary function, thyroid antibodies, prolactin and a couple of others. Unfortunately the results take a couple of weeks to come back. (Something to do with them not running the tests very often.) She's going away for a month and I don't have an appointment with the other Endo in the clinic for three weeks so I guess I'm back to waiting.
She thinks I have some cortisol problem not necessary Addison's primary or secondary but possibly a third type related to my asthma preventor and and nasal spray causing me to react to the cortisol in them. I'm hopeful that it's the last one as my Ashthma isn't very bad so if I stop taking them it might bring me right.
I've just checked my Vitamins
My B complex has folic acid: 40 MCG
but I've just looked at my organic iron and it has 100 MCG
Is it a problem having too much?
I'm sorry I didn't get back to you yesterday but I was gradually feeling better and was kind of hoping that it was all nothing.
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