Suspect AI in family member - TIA/Strokelike symptom?

[Rene]

Polyglandular autoimmune is clearly in my family. I have Addison's/hypothyroid/premature ovarian failure; my sister has type 1 diabetes/hypothyroid/celiacs; brother has celiacs.

My mother is my concern now as she has had celiacs for years and hers is visible and severe with extreme sensitivity and symptoms. She is also hypothyroid. She has been feeling bad for several months. She had high blood pressure and was treated for that. Blood pressure has dropped, nausea and loss of appetite, some random vomiting, weight loss (weighs less than has for fifty years). Her doctor has been adjusting meds and also switched an antidepressent. Also checked gull bladder which tested fine.

I hadn't seen her in a couple months and went to visit and my first thought was that she needs to see an endocrinologist. Her doctor doesn't think that's necessary. I talked my way into an appt for her which is coming up in the next two weeks.

She had an incident a week ago where she became temperamental and confused with my father. She was asking the same questions and asking about things she already knew. He took her to the ER. She cannot remember four hours. She vomited and doesn't remember. The ER doctors essentially gave her no diagnosis. Someone suspected a TIA but she had no classic strokelike symptoms. I've heard if you don't catch it right away you may not be able to tell. My brother who is in the cardiovascular field said it doesn't match what he knows about TIA and strokes.

I don't want to wish an addrenal insufficiency on her but feel like this may be an issue and is being overlooked. I want to feed her with as much information as I can so she can communicate all of this well at the endo appt. Wish I could be with her.

Same small town where I was diagnosed as a child. They didn't have a clue at the time and it took a big city doctor to figure it out.

Any thoughts on insight would be appreciated.

[Idaho Dusty]

Rene,

It's got to be heart breaking to see your mom in the state she's in.  Please try to get her to see an endocrinologist and get an ACTH Stim test.  Is there any way you could call the doctor and explain why you think she needs it and what the results would mean?  DHEA-S, Renin, Testosterone, antiadrenal antibodies, Vitamin D, would be other tests you might push to get run.

Good luck and keep us posted!

:) Dusty

[Rene]

Thank you for your concern and for the helpful information. I'm going to put it all in an email to her that she can take to the doctor in order to remember to communicate all of this to them. It's hard for her now to be her own advocate so I'm helping as much as I can from a distance. Talking to the doctor too is a good idea. I went through it with the nurse when I called but I'm not sure that will get communicated to the doctor.  

[Idaho Dusty]

Rene,

I've got another idea, you might want to print off this page from the National Adrenal Diseases Foundation website for the doctor.  You could fax it over to the doctor along with a list of your mom's symptoms.  And/or you could underline the symptoms that your mom has and put a star by the diagnosis page.  Could you call in to your mom when she's having her appointment so you can listen into the appointment?

She also needs her ACTH tested.

:)  Dusty

[ShannonD]

Rene,

Sorry to here about your mom.

WHen I had my first addison's crisis, I thought I was having a stroke.  My balance was off, I was confused, could not speak properly, could not remember things, nauseous..... My serum sodium was really low.  Later on I continued to worry that I had had a stroke because I developed this incredible pressure in my head, and my eyes would not move quite normal (sublte to others, but not to me).  A lot of this was due to the low sodium and electrolyte abnormalities, but for the longest time the brain symptoms were so incredibly pervasive that I was almost certain I had had a vertebral artery stroke or TIA (which is very different from the symptoms which come from a stroke from the carotid arteries.)    

How old is your mom?  Did they do a head CT, or MRI? Did it show any changes consistent with TIA?  Since she is older, it may be that the doctors want to treat it as if it were a TIA, and have her on a daily aspirin, if it is not contraindicated.  Perhaps easy enough to take an aspirin, but I agree with you, that she should have adrenals checked.  Is she pigmenting?

Did the doctor switch the antidepressant before or after the episode? Medications can definitely cause some delerium symptoms in people who are older.

Definitely sounds like she should have a complete work up, especially with the vomitting and weight loss.  Could the vomitting be from a stomach ulcer?   (If that were the case, aspirin might be a bad idea) Sometimes an ulcer just causes vague sense of nausea without much pain.

Try to get as full a picture of your mom's symptoms before you go with her to the doc, so they can try to figure out what is going on.  The body is so complex.  

Good luck,
Shannon

[dollsie]

Hi Rene,

Like everyone here, I'm really sorry to hear about your mom. This must be a really scary time for all of you. She is lucky to have you as her advocate even though you feel far away. I really hope things are resolved quickly and safely for her.

Of course I completely agree with everything Dusty and Shannon have said. Just wanted to add a couple of tidbits for what they're worth, and in case they might help somehow. Before being diagnosed, I had several instances of numbness/tingling and poor proprioception (sense of body in space, balance issues). Each time I went to the ER they suspected a TIA but couldn't find one, sent me on my way. One time, I was admitted when these probelms were accompanied by weakness. I had a spinal tap and MRIs that were all negative, but the spinal tap sent me into a crisis with vomiting, etc. When I had my last crisis, my labs were indicative of some kind of vasculitis or stroke-like problem: high platelets, high D-dimer protein (goes up with blood clots), high homocysteine, abnormal EKGs, some other stuff. I remember having pain in my carotid arteries and hips, and profound weakness and confusion. I thought I was having a heart attack. I'm sharing all of this because even though the symptoms then seemed vascular in nature, I now attribute all of them to Addison's. I've learned from my doctors that the weird lab abnormalities were probably from a combination of undiagnosed Addison's with resulting dehydration, and long-standing hypothyroidism.

Maybe this is common among AD people, but I definitely used to become confused and incoherent on a nightly basis. Sometimes I still feel like that when my cortisol gets too low. I've noticed that the tingling returns if I eat something I'm sensitive to, especially gluten. When you mentioned that your mom is heavily symptomatic of Celiac, it reminded me of this.

Just out of curiosity, was her thyroid medication increased recently (or prior to her developing these new symptoms)?

There is certainly enough evidence in your family to push for the stim test. I'll be thinking of you and your mom.

Take care,
Leigh

[Rene]

Thank you all for the information and guidance. I don't have all of the answers to the questions asked but will be talking with my Mom to confirm with her. I will send her the information on Addison's and will be writing everything up for her this weekend.

There was nothing from the tests at the hospital that would indicate TIA. There was just speculation because it could not be easily explained.

Your diagnosis stories are helpful. I also appreciate the concern.

[Idaho Dusty]

Rene,

Any progress with getting help for your Mom?  She's so fortunate to have you in her corner!

:) Dusty

[Rene]

Dusty,

My Mom is waiting on the last of the results. The adrenals seem to be functioning. The thyroid medication she was on was not the proper medication or dosage. Correcting that has made her feel much better. I'm so glad that an endocrinologist is managing it because her primary doctor was not handling correctly.

We'll see what happens with her weight loss issue. My Mom is extremely sensitive and my suspicion is that things may be going on that haven't quite gotten there to show as a problem, if that makes sense. My sister who has polyglandular autoimmune issues (diabetes, hypothyroid, celiacs) finds she is very sensitive. Her diabetes onset took a long time and she felt "wrong" before they found the numbers to be off.

I'm just glad she's under the care of an endo now to keep an eye on it and watch her progress. I just hope it's a good progressive doctor.

Her drop in blood pressure still doesn't make sense. The body is so incredibly complicated. This insight I've received from your forum is incredibly helpful. I appreciate the resource you have provided.

As an aside, my doctor still wants me to switch from HC to dexa. My elevated ACTH. I've moved my HC dosage but am still experiencing the tanning and elevated ACTH. She's doing an MRI as well so that's comforting. Your advice helped me to ask the right questions.

Thanks,
Rene

[Idaho Dusty]

Rene,

Thanks for the update!

Sounds like your mom's on the right track with getting well.  You've done a great job getting her help from a distance!!

I find it interesting that your doctor wouldn't suggest you up your HC dosage to 25 mg prior to switching you to dex.  Dex works better for some but I think it's important to stick with bioidentical hormones before trying the synthetics (just my opinion!).  Are you fatigued or do you feel good?  Are you average weight?  How's your sleep?  

I'll be curious to hear the results of your MRI!

:)  Dusty

[Rene]

I am actually on 25 mg of HC. My doctor thinks that's a little high for me considering my size. She thought 20 would probably do it but I don't agree. I know how I feel and 20 just wouldn't cut it. I'm sleeping very well actually.

[Idaho Dusty]

Rene, how are you dividing your 25?  I'm 5'2" and 125 (like a pony).  I'm on 25.  It's not too much for me.  How are you feeling now?  Any better?  Are you switching to dex?

:) Dusty

[Rene]

I'm taking 15 in the am and 10 in the early afternoon. I was taking more in the a.m. but tried making that change so not too much at once. I'm 5'6" and about 127 lbs. Less than 25 is just not enough for me.

I just picked up the prescription for Dex today. I am nervous about this. I'm hoping it works well for me but we'll see. I'm trying not to psych myself out.

[Idaho Dusty]

If the dex doesn't work, you may want to consider trying the HC with a more physiologic dosing.  10/10/5 or, ideally if you can split your pills up this way, 12.5/7.5/5.  15 mg first thing in the am is too much for me, just sayin.  I'm with you, less than 25 won't work for me either.

Good luck with the dex.  I hope you feel better on it!

Clin Endocrinol (Oxf). 1997 Mar;46(3):263-8.
An assessment of optimal hydrocortisone replacement therapy.
Howlett TA.

Leicester Royal Infirmary, UK.
Comment in:

Clin Endocrinol (Oxf). 1997 Mar;46(3):269-70.
OBJECTIVE: To assess the management of hydrocortisone replacement therapy in one institution, and derive recommendations for optimum starting and maintenance replacement therapy with hydrocortisone. DESIGN: Retrospective survey of clinical management using a clinical information system and the patient case notes. PATIENTS: Using the department's clinical information system, 210 patients were identified who had been treated with hydrocortisone. Case notes were reviewed and 130 patients were identified whose records contained the results of at least one valid hydrocortisone day curve. Data on 174 day curves performed on these patients (65 on twice daily and 109 on thrice daily hydrocortisone regimes) formed the basis of this analysis. METHODS: Hydrocortisone day curves had been performed as part of routine clinical management: patients collected a 24 h urine for free cortisol on the day prior to the test and took their morning hydrocortisone at the normal time, at home, on wakening. During a day-case attendance serum cortisol was then measured at 0900 h, 1230 h (prior to any lunchtime dose) and 1730 h (prior to the evening dose). 'Optimal replacement' was arbitrarily defined as that dose which achieved a UFC and 09:00 h cortisol within the reference range for the normal population (to avoid over-replacement) combined with 1230 h and 1730 h cortisol above 50 nmol/l, and ideally above 100 nmol/l (to avoid under-replacement). Raw data from all hydrocortisone day curves was analysed in an Excel spreadsheet to determine the effect of different dose regimens on the percentage of patients achieving each and all of these 4 criteria, and on an overall 'quality score' (comprising 1 point for each of the 4 criteria attained). RESULTS: Patients on twice daily hydrocortisone regimes achieved optimal replacement in 15% of cases compared to 60% on thrice daily regimes (P < 0.001 by chi 2); mean overall 'quality scores' for these regimens were 2.72 and 3.49 respectively (P < 0.001 by t-test). Of individual dose regimens with sufficient cases for valid comparison, a dose of 10 mg/5 mg/5 mg (rising/lunch/evening) achieved optimal replacement in 66% and mean 'quality score' of 3.62 (n = 53), compared to 50% and 3.32 for 10 mg/ 10 mg/5 mg (n = 28) and 10% and 2.48 for 20 mg/-/10 mg (n = 29). CONCLUSIONS: The use of arbitrary, but logical, criteria to assess the quality of hydrocortisone replacement regimens indicates that optimal replacement is achieved with thrice daily hydrocortisone regimens, and that the traditional twice daily regime results in a 0900 h cortisol above normal in one-third, and late afternoon cortisol below 50 nmol/l in one-half of patients thus treated. An appropriate starting dose of hydrocortisone of 10 mg/5 mg/5 mg (rising/lunch/evening) is suggested, with subsequent individual adjustment based on simple hydrocortisone day curves.

PMID: 9156032 [PubMed - indexed for MEDLINE]

[dollsie]

Hi Rene,

Just wanted to let you know that I've been on Dex for several months now and would be happy to talk with you about it, if you have any questions. Ashley takes Dex too. I remember the first day switching from HC to Dex was a little rough - I had a small dose of HC on hand just in case. It took a few days to really feel the difference between the 2 drugs.

What is your dose of Dex, and will you be taking it before bed? Did your endo raise your Florinef dose? (Dex is basically pure glucocorticoid, so you'll need to bump up your Florinef). I ended up needing between 0.05-0.1mg of extra Florinef when I switched.

Hope the transition goes well for you!

Take care,
Leigh