I have been panhypopituitary for 6 years. You'd think I would know everything about my condition by now, but I don't. Since replacing all of my hormones, I regularly get sick with bad infections that I cannot rid myself of easily. When one of my kids get sick, I get it too, but my symptoms linger for 3 weeks while theirs get better after 10 days even with severe asthma. I have had pneumonia several times in the last few years, I have had the flu twice (although I get vaccinated every year), I get sinus infections a few times a year and I am on antibiotics regularly to fight the infections.
I feel so different from other healthy people, who kick their infections in no time, or only get "colds". My work involves being around small kids every day. Oftentimes they are sick when I work with them. Long term I should probably find a different field to work in.
But, can anyone tell me whether they also suffer from infections often? And, what dose of Hydrocortisone are you on for maintenance? I take 10 mg and 10 mg HC/daily. Maybe that dose is too low to fight infections?
I believe that we don't have a normal immune response which is something my endocrinologist never told me. I feel better knowing that it is not my fault for getting sick so often and not being able to get well so easily.
Please let me know anything that might help me understand about the infections.
Well, I stress dose very seldomly, only when I have surgeries or I am really really sick. I usually get by without extra HC, but I guess that causes the inflammation to build up in the nasal passages causing sinus infections and in the lungs causing more havoc with asthma.
Do you get sick a lot? How high do you go if you have a sinus infection? Do you usually get antibiotics from your physician right away or do they try to tell you to wait and see?
t is not good to stress dose too often but when you need to - you need to! It is bad to take to little and too bad to take to lot. I came at this from Cushing's and had my adrenals removed so I have the damage from the high cortisol and now live the low.
You have to learn what to do - I get my HC dose in 5mg pills so I can tweak better. I carry around half pills and whole pills so that if need be, sometimes 2.5mg is just enough to get me over the hump - like travel.
If I have an infection - I also boost SODIUM. The crux of the low cortisol is that the body cannot manage to hold sodium so you have to learn (and get tests and get your old tests) to find out if you lower in sodium only or sodium and potassium as well which is not the norm but some of us, like me, do so. So when I feel wonky, I go for salt first and that can perk me right back up. As I go low in potassium, tomato juice or v-8 can help. I avoid gatorade for the sugar but that helps some people. If you don't need potassium, you need to find things to help boost salt only like pickles olives etc but avoid bananas and potassium rich foods when you are not feeling well.
If I have a sinus infection, I tend to only boost a little - but that is ME. I now know what I have to do and I add salt - I tend to take alka selzer cold medicine (salty!) and tomato juice as well - all salty salty salty - and lots of fluids. Like you my hubster is over a cold in three days, I am sick three weeks.
I used to have a doc that zapped all my colds in me and my hubster right away - my new one is not that proactive as she is new and has not seen me at my worst. I am in a stable period right now (first one! woohoo!) and so she has not seen me at my worst yet. But I would get the flu twice (uck) and long times and I tend to just hate this all.
If you have asthma - then your dose is probably too low? Do you get a corticosteroid from another source? Do you need or take florinef?
When do you dose? 20mg is typically taken at 15mg 5mg - 7 or 8am for the first dose and second between 2-4pm. Read through some of the health pages in Adrenal insufficiency - there are some guidelines there written by a doctor. But it can vary widely. I was switched recently to a long acting steroid - dex - trying to suppress my pit tumor. Not too happy with it.
I do take steroids (inhaled) for my asthma. I don't need florinef. I take my 10 mg at 7 am and the other 10 mg at 2-3 pm. I feel okay on that dosage. It is enough to take 10 mg in the mornings. The only reason I am thinking that 20 mg HC is too low is because of the allergies/asthma symptoms. But, I weigh 130 lbs, so I don't want to take too much either. I think I could get by with less actually, but why try to go lower?
My endo has always liked Hydrocortisone because it wears off quickly and resembles the naturally produced steroid. I have osteopenia, so I don't want to add more problems to the existing ones. I am also low on estrogen, so I don't want to push my luck with my bones by adding long acting steroids.
So the steroids you take for your asthma are typically prednisone like ones - long acting. So you have a combo of short and long acting steroids. So with that you have to factor in when you take those steroids. Long acting steroids last longer but take longer to take effect.
You don't want to go too low - that is also bad. Dosing is part art, part science. HC is preferred - and your endo is correct. If you already have bone issues and other issues, it is likely your asthma meds that are causing the issues.
What is the cause of your panhypopit? I pretty much had everything removed and had a couple of pit tumors. Is your endo a pituitary endo?
just to clarify: I am not normally on Prednisone, except this year I was put on two short high rounds for the sinus problems I have had. On a regular basis I only use the 20 mg HC in a day.
I had three pit gland surgeries which have left me with combined pituitary hormone deficiency (panhypopituitary). There are other factors that might contribute to the infections like no DHEA in my system. Or, maybe even lower than perfect T3 and T4 levels. Not sure though.
I have used DHEA in the past, but I had side effects from it, mainly superficial thrombosed veins on my rib cage and arms. Very strange to suddenly have hardened and painful veins. So, I am went off of the DHEA.
I wish there were a supplement that would work wonders for the immune system.
My endocrinologist is the only one in our town. He's quite old and I have been his patient for close to 20 years. But, a fresh second opinion about how to manage my panhypopituitarism would probably be a good idea.
I have tweaked my estradiol replacement within the last few weeks, not sure if it is better than the previously used compounded version. Sometimes I feel a little overwhelmed with the constant use of meds. I also have Diabetes Insipidus and growth hormone deficiency.
But, I guess, the main thing is to keep a positive outlook on life.
Alas, I cannot work. I go up and down like a see saw. And if I am around people I get sick. It is roulette going to the grocery store.
I don't have DI - but my ACTH is so high they keep talking about radiation and then I would have DI... but I have GHD, no thyroid, no adrenals, my parathyroids are largely removed and the one left is barely working, and I had a full hysterectomy to boot. I had one pit surgery but two tumors (a two-fer - bargain!) for Cushing's and prolactinoma. I am grateful not to have regular diabetes - which oddly runs rampant in my family and most people with Cushing's get, but I don't have (my mother died of it and my brother have it as well as aunts etc).
I use the estrogen patch. But I run hot - I just cannot regulate my body temp. I am either super hot or super cold - there is just not a normal for me.
I travel to my endo - 6 hours one way. I have a local too in case of emergency (as we know that stuff happens) but my neuro-endo manages my tests and meds. My local will test my thyroid by doing TSH which is pretty useless- like a .00007 helps??? Hello???
I just try to help other people not be me (testing error and doctors telling me it was PCOS, or other stupid stuff when they knew I had a pituitary tumor was just plain stupid) and to push, get copies as I know I was told all was ok when it was not.
I wish for that wonder supplement too! I was actually given IVIG - intravenous immunoglobulin to boost my immune system and had an allergic reaction, an adrenal crisis and almost died. So no idea what I can do.
Rumpled, thank you for your reply. So, we're pretty much taking the same replacement. That is nice to know.
What patch do you use and what is the dosage if I may ask? I take the Viville dot 0.5 and use progesterone/testosterone cream separately which is compounded by a local pharmacist. I used to take .50 progestrone/ml/day for years, now the RX reads 200 mg/ml/day. That is too high for me as I started to have side effects like depression, dizziness, fuzzy headedness. I cut back last night to 100 mg/ml/day and will have the RX changed to a lower dose.
My endo also checks on TSH, but he does test to T3 and T4. I think the TSH tells him how hard the pituitary is working.
Can you apply for disability benefits? Could you do that?
I am glad you don't need to replace your growth hormone. It is a nuisance every night and "just one more thing to take care of." Also, Diabetes Insipidus can be quite debilitating and super annoying. Until I knew how to use the tablets (anti diuretics) and keep normal fluid levels in my body, I almost died several times due to hyponatremia (too much water in the cells and the sodium levels at seizure level). But, I am good at regulating it now.
I am glad to have found you, so we can share our experiences and also help each other.
I take the vivelle dot as well. I use DHEA to raise my T - I have odd response to T and E and tend to convert all E to T so I tried T but it was awful so had to stop. I was also using a compounded gel (man in a bottle!).
I do take GH nightly - right now just a low dose. I am on disability benefits. I have the panhypopit and developed a neuro-muscular thing too and just keep going up and down. I have had both shoulder freeze up on me to falls to just getting sick all the time - getting sick now. Ah joy.
I have very low BP and have to take tons of sodium - so I take 2k sodium as well as 1.5 florinef tablets and have to salt my food. I have to up my sodium all the time and summers are horrible. I can only work outside (I love to garden) for short times when I get dizzy from sweating. I have POTS from the BP thing. I think that would complicate the DI thing if I would get it now.
There are a few of us around and it is nice to know others - most people just cannot understand what it takes to manage *everyday*.
How high is your GH dose? I started very low, but am at 0.6 mg now. I am within my range, but not even in the middle. Without it, I isolated myself totally from others, although I am very outgoing normally.
I use 1.5 ml T. It is still in the low range. I don't have side effects from it, except for extra hair growth where I place it, so I had those hairs zapped for good and put it where I shave now. So, you take zero T now?
I don't take any florinef, supposedly not necessary with pit gland failure. Summers are awful here too, as you can imagine. I try to stay indoors or travel to colder climates.
What is POTS? Please tell me how much DHEA you take. I was thinking 5 x 2/day. That would be a beginning.
Due to my freuquent infections and not feeling well enough to go to work every single day, I am considering application of disability. I don't know anyone on disability, so I am not sure what it will all entail.
Have you ever heard of Dr. Theodore Friedman in LA? He's the Cushings/Addison's specialist. I have seen him before and he helped sort out all of my meds. He's written several books too.
Back to work tomorrow. It will be hard since I was sick for 3 weeks and still feel wiped out.
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