Thread: The health merry-go-round

Sorry if I sound like a whinger / moaner but I find it helpful to vent this on the forums even if no one responds.

The good news is my fortnightly blood tests show my Sarcoidosis is dormant but the doc is keeping me on 10mg of cortisone a day.
The results are so consistent that I no longer need to go for PET scans for the foreseeable.
My knee pain is low level probably because I'm not using it much.

The bad news is my Ca blood levels are all over the place - this now suggests they are not linked to the sarcoidosis.

Even though my cortisone intake is small my sleep is still poor, so I am constantly very tired
There's no real pattern but in the last week I've had 4 nights of 3-4 hours sleep and 3 nights with 5-6 hours, the rest of the night I am up and down like a yo-yo.

I get about 4 hours of functional time each day which is taken up mainly with basic household chores because SWMB still has her arms in a sling from her broken shoulder - it is healing and she can now cook a few things and clothe herself which is great because I was really tired of doing all that. The rest of the time I'm on the bed (rarely sleeping, maybe dozing) or veggying out in front of the computer or TV.

Walking (more like ambling) the dogs has been reduced to a max of ~2 km every other day, and ~1km every other day.
When I do a 2 km walk I'm puffing by the end and have to have spend an hour on the bed resting.

Shed wise I can't stand up for more than about 20 minutes without needing a rest so this usually means I'm not starting anything new and just doing trivial stuff like rearranging the screw drivers but most days I don't even get in there. I've done a few things sitting at my electronics workbench but even there things have really slowed down.

We no longer baby sit our grandson on a regular basis because SWMBO can't pick him up and I'm dog tired. We have done some half days of baby sitting but this wipes me out.

The Sarcoidosis specialist is at his wits end and is keeping me on blood tests every fortnight and has referred me to a Specialist Endocrinologist but I can't get an appointment until mid June.

Bob,
Venting hear in my humble opinion is very welcome and if it helps you in any small way.
Vent away.

Cheers Matt,

Well, things keep changing every other day here.

Saturday my left knee crapped out while walking (ambling) the dogs - I wasn't doing anything particular strenuous - it was near the very end of the walk so it was just a slow amble when the knee just sort of seized up and any movement or weight caused pain. Over a distance of 10 steps it reached peak pain and stayed there. I hobbled to they car some 50m away and went home took a bunch of panadols and lay on the bed in agony. It eased off after an hour, seating was OK, but every time I got up and tried to walk on it it gave me grief so I spent the whole day seated or on the bed. The pain in the left knee also triggered new pain in the right knee!

Fortunately by Sunday with the help of more Panadols it had eased off and managed to make it to a family lunch but no chance of walking the dogs. During the day I could feel the minimum pain position was by splaying my foot sideways - this is what caused all my probs with the right knee so I persisted in holding it straight even though it was more painful.

Monday was better again I I took the dogs to the park and drove wiring 50m of a parl bench and sat on that and threw the ball for the dogs. By this morning the pain was so mild I went for a 1km walk and then sat on the same bench and threw the ball for the dogs.

Feeling like I had got through this one I then get a phone call from teh specialist this afternoon saying my Ca blood levels are higher than ever so tomorrow morning blood tests and depending on the result a new dose of steroids will be prescribed.

Two steps forward and two steps back.

Wow Bob, sounds terrible. Generalized systemic inflammation gone way out of control. Had any C reactive protein or such like tests done? Hope you get better.

Originally Posted by rob streeper

Wow Bob, sounds terrible. Generalized systemic inflammation gone way out of control. Had any C reactive protein or such like tests done? Hope you get better.

Yes definitely gone whacko.
I had a CRP test last year but its time for another.

bugga feel for you mate, with both yourself and wife partially laid up, can you/ are you eligible for some home care assist. Can be humiliating admitting to needing this type of help but someone coming in doing dusting vacuuming etc is very therapeutic to watch....so Ive been told

Originally Posted by Tonto

bugga feel for you mate, with both yourself and wife partially laid up, can you/ are you eligible for some home care assist. Can be humiliating admitting to needing this type of help but someone coming in doing dusting vacuuming etc is very therapeutic to watch....so Ive been told

Cheers TT
Robot vac helps considerably especially with 2 dogs.
The Robot works better if its run every other day because it has a tiny dust reservoir.

SWMBO is rapidly coming good, she's started cooking every other night - Whoo Hooo.
SWMBO is a much better cook, my repertoire consists of baked meat and veg, OR Goop (a one pot meat & veg with some spices or curry in it) OR salad with something burnt on the BBQ or grilled.
In winter I sometimes make a soup (ie Goop with extra water).
I used to do lots of stuff with pasta or rice but that is now out because of my diabetes.

The other good thing is SWMBO has been doing some washing and folding.
Today she also took her first short drive to the local shops which is going to save me a lot of time.

Even though my calcium and sugars are all over the place I slept for 6 hours last night and got into the shed for ~20 minutes this morning to swap out a broken fan on a machine but then had to have a lay down.
Took in some dry washing and folded it but then had to take a break.
Went back later to the shed for about 30 minutes to do some noise measurements and tidy up the WW section which is a mess.

hi Bob
saw my Doc this morning.
Based on that visit do you know what your blood pressure is?
I ask because my Doc commented that low blood pressure is associated with excessive fatigue.

Originally Posted by ian

hi Bob
saw my Doc this morning.
Based on that visit do you know what your blood pressure is?
I ask because my Doc commented that low blood pressure is associated with excessive fatigue.

BP is typically 140/90 and its been like that since I was about 18.
I can get it lower by relaxing on the recliner and stroking a dog - gets it to 130/80.

Went to sarcoidosis specialist yesterday.
Blood Ca is still up so has put me on Paquenil. That's now a total of 10 pills a day.
Kidney still leaking protein same as last year - at least this it's not going up.
CRP is fractionally above normal range but doc reckons its the least of my worries
Iron is now showing up as low
Vitamin D is low as it has been for several years but cannot take supplements because Ca is too high.
HB1AC is too high - ie diabetes not under good control, could be due to steroids.
ESR is OK.
ACE is OK - this means Sarcoidosis is dormant.
PSA is very low
Triglycerides are up from last year. All the cholesterol stuff is OK.
Everything else is more or less normal

Knees are OK.
Sleep is slowly improving.

The Sarcoidosis specialist reckons it's now all got beyond his expertise and has recommended I see an Endocrinologist.
My first attempt at an appointment was for mid-June but picked up a cancellation so I'm seeing him next week.

Not a doctor, but wondering on two things:
1) can you get in the sun to improve vitamin D?
2) Is there a possibility that you could move all of your food consumption into a narrower window during the day? I.e., all within a 6 or 8 hour period?

The latter, even if you eat the same amount and same type of foods will help both A1C and triglyceride numbers. How much? I don't know, maybe not a material amount, but if medication isn't an option or isn't working for the three issues, #2 may be helpful. Fairly new area of research, but it is legitimate research that's yielding the results, not broscience blogs. I guess the next question is if concentrating food consumption can help A1C and cholesterol ratio, does it actually do anything in terms of mortality and morbidity.

High blood pressure, bad cholesterol ratio and diabetes as a combination is a huge set of risk factors for increased mortality. I'm sure you know that (mortality is my specialty by profession, I tend not to see data until mortality or morbidity occurs, but do like the more recent trend to focus less on 6 or 12 week studies and base results on "we think that these results mean __ in the long term" and actually study mortality and morbidity in a population instead.

I realize also that when taking as many twists and turns as you have, an navigating as many bumps, your reaction is probably "of course those are associated with higher mortality, and I have more immediate concerns than that...like just feeling decent".

Originally Posted by D.W.

Not a doctor, but wondering on two things:
1) can you get in the sun to improve vitamin D?

Nope, I can't do that. If I get more vitamin D this will extract more Ca from food and increase my Ca levels which are already too high.
I walk the dogs early in the morning sometimes in half darkness to avoid the sun.
Trouble is Vitamin D is needed for things other than Ca extraction so these things may be suffering.

2) Is there a possibility that you could move all of your food consumption into a narrower window during the day? I.e., all within a 6 or 8 hour period?

Yes I know about this.
For about 6 months last year and about 9 months in 2017, I was doing this, usually by skipping breakfast, or breakfast and lunch and my triglycerides did improve and I lost about 10kg.
I tried the other way around ie skipping dinner but found it harder to avoid snacking in the evenings than the mornings and as soon as I went back onto steroids, reducing the number of meals was too hard as I got the munchies really badly. I also have to take my meds morning and night with food and found if I took the steroids at night this made it harder to get to sleep.

Since being on the lower steroid dose (10mg) for the last few weeks I asked the doc if I can try taking the steroids without food and he said I could give it a try and have started skipping breakfast again (just a cup of black coffee) and after a couple of days of feeling a bit nauseous I found I can just manage. This means I can take my food in between noon and about 7pm. My aim is to to reduce that to between 3 and 7pm and eventually back to one meal a day.

I'm really stuffed as to what I can eat.
I'm already on a very low carb diet, no alcohol, sugar, bread, pasta, rice, cereals, legumes, and most root vegetables.
I used to eat heaps of fruit but am down to an apple a day or some strawberry or blueberries.
I used to eat a lot of dairy (yoghurt, cheese) but have had to cut this down because of my Ca probs.

I do most of the cooking and we basically end up eating meat, fish, eggs and above ground vegetables.
Our veg bill is around $80 a week for two persons.
I have found a coconut yoghurt substitute that has no added Ca but its expensive so have started making my own, still not cheap.

That's a bummer on all accounts. I've been on prednisone before for asthma, but not often - only when I'm already sick and the asthma is very bad causing pain from the spastic coughing.

I had a sense while I was on it that I could lift a car off the ground if necessary and that I would eat any live animal that crossed my path, no killing or cooking needed - just start biting parts off and eating.

Originally Posted by D.W.

That's a bummer on all accounts. I've been on prednisone before for asthma, but not often - only when I'm already sick and the asthma is very bad causing pain from the spastic coughing.

I had a sense while I was on it that I could lift a car off the ground if necessary and that I would eat any live animal that crossed my path, no killing or cooking needed - just start biting parts off and eating.

The first time I took the steroids I felt that way and while walking the dogs spontaneously burst into a run (well, more of a shuffle) and managed to keep it up for a couple of hundred metres before I ran out of puff. I haven't run that far for maybe 20 years. I also didn't get all that hungry. This energy boost lasted about a week and then if anything went back the other way leaving me flat and very tired
The latest round (been taking them since Jan) provided little or none of that energy boost and after a few days I went flat and tired again. This time I also have much more of the munchies and also some aggression and SWMBO has told me I'm much grumpier and short tempered than usual.
Anyway - seeing the Endocrinologist this arvo and will be interested to hear what he says.

4 medical things this week

Tues - endocrinologist
He said my Ca levels as less of a problem than my poor sugar control and that needs immediate attention.
My Blood Pressure is OK but my resting heartbeat is too fast (105 bpm)
The steroids are having a deleterious effect on blood sugars and I need to get off them as son as I can I can - he’s in touch with my sarcoid guy to discuss my case
More blood tests (one test has to be sent to the east) coast for analysis and two changes in medication.
After two weeks on the new meds he wants me to keep a sugar, BP and heart rate diary for 4 weeks - measured 4 times a day before meals and bed.
Then he will review - If I have to stay on steroids I may have to go on insulin.

Wed - Eye test because I am starting Paquenil as an possible way to get of steroids - Paquennil can affect colour vision
Optician reckons my eyes are in good shape - no evidence of diabetes.
Started on the new Ca blocker - slight headache and feeling of being overheated? Eased off by teh afternoon.

Thursday am - More blood tests
Thursday pm - Nephrologist
Turns out he's a mate of the Endocrinologist.
He said none of what I have is irreversible yet, and suggested the usual - watch what I eat and lose some weight monitor sugars.
He agrees strongly with what the Endocrinologist is doing and indicates the Endo should take charge of my meds and treatment for the foreseeable future and he will only step in if required.
Makes sense.

So nothing definitive yet but am sleeping better since I cut to two meals a day on Monday - less sugar, less peeing etc.
Its a bit hard because of the steroids but I will persist especially as it appears my sleep is improving
I got 7 hours sleep last night and 6 the night before.

No medical visits next week than goodness I am tired of spending so much time in Dr’s waiting rooms not to mention the ever increasing hole in the wallet.