It's been quite a while since I've been active here, and my health has been up and down. But for the sake of the community, I figured I should share what I've learned.
My hypothyroidism appears to be both primary and secondary, TPO-Ab borderline but definitely positive, yet fluctuating function not explained by thyroid cell death - thus likely pituitary related also. It is important to remember that this was triggered by a major viral infection, which was very likely EBV (Epstein-Barr Virus).
Pituitary dysfunction is backed up by the fact that I also have fluctuating morning cortisol levels, with 2 values weeks apart being 235nmol/L and 552nmol/L (range 180 - 620). Further to this, I have consistently elevated prolactin (mild - thus not prolactinoma), and very low DHEA-S levels. Combined with symptoms of fatigue, unrefreshing sleep, poor appetite, and poor immunity it could be a wide range of issues; most of which have been ruled out.
The 2 leading theories at present are primary hypothalamus or pituitary damage caused by viral inflammation, and post-viral fatigue syndrome [PVFS] (related to ME/CFS). The latter is the diagnosis I recieved from an endocrinologist, and does fit the immunological profile of my symptoms.
Ongoing hypothyroidism is ruled out at this stage, since both fT3 and fT4 have been properly optimised with a combination of T3 (12.5mcg) and T4 (75mcg). Iron, Vitamin D, Folate, and B12 have all been checked and are optimal (I now take 75mcg/3000IU vitamin D every other day). Coeliac and other sensitivities are negative.
As much as I hate to admit it, the theory of PVFS does fit my blood work and symptoms. It does not fail to explain any of my abnormal test results, including normal Sed rate and normal CRP.
Therefore I must pursue this line of enquiry as if it is correct, and use the results of that as a final differential diagnosis.
Current Investigational Interventions:
-DHEA 50mg per day - to replace blood-confirmed deficiency, with a goal to raise DHEA-S above 10µmol/L (currently 4.7 µmol/L; normal range 7.56 - 17.28 µmol/L).
-200mg Coenzyme Q10 + 20mg sublingual NADH (as seen in CFS studies to mitigate increased oxidative stress).
-Omega-3 Fatty acids to complement diet (540mg EPA, 360mg DHA).
-As required use of low-dose hydrocortisone first thing, when morning fatigue is severe (5-10mg depending on severity - no adrenal suppression from this dose). This will make up for the deficit occasionally caused by low CRH/ACTH production and poor sensitivity.
-On/Off cycling of Inosine Pranobex (a.k.a. Immunovir/Neosine Forte) 1000mg x 3 per day. This has been shown to restore impaired NK cell function and reverse immunological changes that occur as a result of severe EBV infection.
Further to this, I intend to privately test ADH/Vasopressin levels, since my body water content is high, but blood volume is low (despite adequate sodium). This would explain the idiopathic episodes of hypotension. I would also like to test if I am still seropositive for EBV, HHV-6, or CMV - since if this is the case, symptoms could resolve far quicker with proper antiviral therapy. However antibody titers are expensive, and this is unlikely to occur until I have saved for these tests.
The good news is that the progression suggests I will eventually fully recover anyway, since overall symptoms have become gradually less severe over the last 2 years; despite flare-ups. If the positive TPOab was a red-herring, and my hypothyroidism is neurally mediated, then that too may one day make a full recovery (though unlikely). It could take 10 years for all damaged rogue B-cells to die off, but if this is the correct diagnosis, then I am comfortable mitigating symptoms as they gradually resolve.
Perhaps this is my final diagnosis. Perhaps there is an end in sight.
Do I need an increase in Thyroxine
Can anyone help me understand my stress profile from Genova Diagnostics please?
Chronic Dehydration and hypo? Link to cortisol? Pituitary function tests listed - any ideas? Please jump in and comment!
