Discussions By Condition: Endocrine conditions

44YO survivor of Hodgkin's, IIA, 1995... Body is going haywire. Doctor's befuddled.

Posted In: Endocrine conditions 0 Replies
  • Posted By: Anonymous
  • January 23, 2017
  • 09:21 PM

This may not be endocrine, but it is a good landing spot.

Dx'd and treated for in 1995. Staging included splenectomy and biopsy where two salivary glands were excised, likely of no consequence, except as contributory to xerostemia. Treatment was with RT, 150 rads per session (daily, normal work days), fields being (1) mid cranium to bottom of chest 4,350 rads cumulative and (2) abdomen, 3,000 rads cumulative. Upper field was actually two fields with coincidence mid neck.

Current symptomology is episodic in nature, though residual balance issues are rated as severe by PT through testing.
1. balance is highly impaired, vestibular
2. diplopia, correction varies from no prism to 18, pt is left eye dominant
3. nausea
4. ear pain
5. throbbing in left ear, no visual signs of pressure, fluid or infection, but is a precursor to episode onset. feeling is rather rapid and irregular
6. muscle weakness
7. jerky, slowed eye tracking
8. shortness of breath
9. decreased O2 sat, lowest at 90% thus far
10. stuttering speech
11. muttled/cloudiness in head (thinking)
12. short term memory issues
13. difficulty controlling bladder. always feels like he has to pee and control is weak
14. explosive and frequent bowel movements
15. dizziness
16. chills
17. cold sweats
18. decreased sense of taste and smell
19. decreased pain sensation and response
20. facial muscle weakness, primary to right side
21. xerostemia
22. jerkiness in motor movements
23. over-active mucus membranes
24. ptosis, both eyes, more severe in right

Pt is former chemical engineer with no known occupational chemical/radiological exposures. No hx of blunt force head trauma. Smoker, 1/2 pack day of less. Drinks 3-7 alcoholic beverages per week, depending on where his wife and children are.

Current diagnoses:
1. hypertension, treated with amlopopine and (10 mg) and Benicar HCT (20-12.5, 2x/d). Dx ~ 2012
2. depression, treated with Effexor, 225 mg. Dx ~ 2008
3. primary hypothyroidism, treated with 112mcg levothyroxine, Dx ~ 2008
4. erectile dysfunction, treated with Viagra, as needed. Dx ~ 2008
5. PTSD, controlled via Trazadone, 100 mg and environmental stimulus controls. Dx ~ 2012
6. hyperlipidemia, rosuvostatin, 10 mg. Dx 2015
7. reflux, esomepra (40 mg) and ranitidine (150 mg). Dx ~ 2011
8. pre-osteoporetic, 75 mg of something or other. Dx ~ 2016
9. Vit D deficient, 2,000 iu. Was 5,000 iu, but changed doctors and he dropped to 2,000 iu without checking levels

Family medical issues:
Mother - dx of fibromyalgia
Son - dx of cystic fibrosis

Personal health history:
Symptomology as noted is very irregular in severity and duration. Pt episode history has been evolving over past 20 years, as described by patient. Started about 1 year after completion of RT, with onset of severe chills and sweating, fatigue and muscle weakness that rendered him immobile for approximately 36 hours. This did not recur for about another year. The episode severity and symptomology evolved over the following 20 years until where it is now. Chills, sweats, fatigue, mucus membrane hyper-reactivity, and fatigue have always been noted. The episodes became more frequent and less severe, but still debilitating and often resulting in secondary illness such as upper respiratory and/or ear infection and/or pneumonia. Pt has not been known to have a fever since conclusion of RT in 1995. For years, resulting illness was treated and episodes were ignored, until frequency of episodes increased to every two weeks of so, with coinciding increase in comorbid symptoms and the severity of the symptoms as experienced currently. Patient appears normal and highly educated and intelligent when symptoms are not apparent. Upon onset, in severe episodes, pt movements are very jerky, he has severly impaired mobility due to balance, fatigues easily, is short of breath, has sever ptosis and facial droop, and appears to the onlooker or conversationalist to be drunk and retarded.

Patients doctors have been confounded by patients symptoms, with no dx. While RT with spleenectomy may not be foundational in dx, patient believes it is the key to cause. However, recurrence of HL is RO, secondary tumors not known to be present, MRI, MRA, EKG, ECG, CT, and every other test has been normal or negative except as below...
1. pt is EBV positive
2. pt has greater than normal atrophication of cerebellum

TSH low normal ~1.2
Free T4 low normal ~1.3
All drug therapies seem to be having desired effect with no noted side effects, though jury is out again on vit d.

Pt was dx hypogonadism in about 2011; however, treatment was stopped and levels stabilized in normal range. Not checked since 2013.

Doctors know something is seriously wrong, but a diagnosis is extremely elusive as most possible causes support some symptomology, but contraindicated in others.

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