New Doctors more tests: Well my absolutely perfect... - PMRGCAuk

PMRGCAuk

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New Doctors more tests

22 Replies

Well my absolutely perfect GP has apparently freaked out on me and is now sending me to a Rhuemetologist and Cardiac doctor.

I was told by Rhuemetologist it would be 6-8 weeks but apparently my GP has put in a second referral request and I have appt in 3 weeks.

This last week I saw the cardiologist and today had an echocardiogram test. I follow up with her in 3 weeks. Yes I was having episodes of my heart trying to break out of my chest and ended up in ER only to see I was fine. Once I was back on Metoprolol 50 mgs a.m. N 25 pm my cardiac issues have subsided. I tried to tell my GP all I needed was to bump up the metoprolol but no she has to send me to a cardiologist.

I was so happy with ONE doctor.

My most recent labs have some abnormals and I have no idea what they mean except the C-reactive protein which is 9.2 with normal at <8 .

I had two other tests with F carbon Dioxide high at 32. (20-30) normal .... could this be from all the smoke in the fires. I will look it up...

Lastly F eGFR non African American 59Low.

My doctor feels this has gone on long enough and now wants to get a diagnosis that is not from some other doctors.

My orders from Rhuemetologist are to bring in original diagnosis from original doctor etc etc. it will be a challenge as that was lik 7 doctors ago.

I am at 18 mgs of Prednisone and will stay here due to crp elevation and the same slight niggling of temporal pain as usual.

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22 Replies
Judyliz profile image
Judyliz

Hi Lin,

I do not have the knowledge to reply to your questions but just wanted to say I am delighted that you have posted albeit with a problem. Like many members of the forum I have been eager to hear that you were back home from Oregon and do so hope your flat was in one peace and the smoke damage around you minimal. Enormous good wishes to you and good luck collecting all that paperwork for your appointment.

Judy

in reply to Judyliz

Oh geez I didn't realize I did not do a follow up. I had the best visit with my sister ever and it lasted 10 days. I waited until the smoke cleared to come back home.

It is devastating to see the neighborhoods all burned to the ground. My apartment complex was spared and so now we are all trying to get back to normal whatever that is because nothing will be the same.

Physically I feel fine... it is all the labs that are goofy and will need some more explanation....

Soraya_PMR profile image
Soraya_PMR

The eGFR (estimated glomerular filtration rate) is looking at how well your kidneys clear waste product. Yours is only a smidgeon below normal, and no-one in their older years has kidneys that are as efficient as they were in their 20's.

Things that you could consider to ease any strain on your kidneys include:

Maintaining a normal weight. Extra body weight makes the kidneys work harder.

Drink plenty and give your kidneys plenty of fluid to work with. Being dehydrated will show a more concentrated creatinine in the blood.

Maintain healthy blood sugar levels, especially if you’re diabetic.

Maintain healthy blood pressure levels.

I also wonder if your blood tests were done whilst your heart was under stress? Maybe now that you have your medication adjusted, the blood flow through the kidneys would be better and lead to better kidney function???

Higher levels of carbon dioxide may mean you have, amongst other things, Cushings Disease....well that'll be the excess pred then ;)

in reply to Soraya_PMR

Wow thanks for the info Soraya. I drink plenty of water. I have 4 water bottles that I fill and swap out of frig all day long so I know at least four a day. They are the taller sippy bottles. Lately I have been drinking almost two during the night. I have good flow of urine.

I am way over weight. My doc showed me a graph of less pred less weight. Every time I go back up so does the weight.

Yes I have Cushing syndrome.... definitely Prednisone side effect.

Not diabetic but was told one test was pre-diabetic but that blood test has lowered since then ... yep give up the bread products which I LOVE.... so few pleasures left once donuts are taken away.

PMRpro profile image
PMRproAmbassador in reply to

I actually had written a post much the same as Soraya's - and lost it so gave up as I had to go out. Thanks Soraya!!

But as she says Lin - that weight sits there in the middle of the room and you mustn't ignore it. There are many pleasures in life that don't involve bread and donuts! Honestly!!!! And low carb will really help your weight problem on pred.

Soraya_PMR profile image
Soraya_PMR in reply to PMRpro

Lin, I can't bring myself to cut out carbs entirely, but I do feel better for the reductions I have made. I don't eat biscuits or cake, or any puddings, have stopped sugar in tea. I have minimised potatoes, and stick to brown whole rice, brown whole pasta, brown wholemeal bread. I have reduced the portion sizes of those. (I am lucky that I have never been overweight.....my BMI is still lovely despite putting on over a stone) But by this method I have dropped 3lbs and am never overly-hungry. I stick to protein (our muscles need that) and my sweet treats (occasionally) will likely include fruit & cream, as fats have a different route for digestion which doesn't involve insulin. Not too much fruit though, that's sugary.

Quick digesting starches (sugar, sweets, potatoes, white rice etc etc) release their sugars much quicker, this results in a quick surge of insulin, of which there will be some left over, which will cause fat deposits in our already fat tummies. Change to whole foods and the digestion is much slower, the insulin is released in a more sedate manner, and there is less likely to be a surge with excess. This surging and excess is what makes you feel hungry. If you can break the cycle then you will feel less hungry, you'll feel better without all the excess sugar, and if you feel better you're more likely to keep going. Do try it!

I have a theory about 'diet foods', IMO they are laced with pretend sweeteners, the body thinks "Uh-oh! Incoming sugar, let's get the insulin out there quick!" But no sugar arrives, the insulin is excess, you feel hungry, viscous circle.

I'm lucky again here, I can taste Stevia, saccharine, aspartame from a 100 yards! And they make me nauseous if I do accidentally ingest them (haven't done that for a long while). My son became somewhat hyperactive as a child due to aspartame, so I have been reading food labels for a long while. I detest the supermarket prevalence for 'no added sugar' and 'low fat' and steer clear of them all.

in reply to PMRpro

Yeah I am truly going to cut out carbs. I cleaned out my freezer of all bread products. It felt good as if I am going to finally take control of my diet.

I have to trick myself into thinking cooking is fun.

So far I have had salmon and spinach for 2 dinners and it was yummy. Then I had pork chop and Shihito peppers.

I am going to learn how to do crock pot cooking. I made beans with turkey n veges and it was very good with chopped cilantro.

A new friend and I are going to keep each other accountable...... anyway I am going to do it this time.

PMRpro profile image
PMRproAmbassador in reply to

I had salmon and roast veg this evening - all on one tray in a hot oven for 30 min for the veg, 20min for the salmon.

in reply to PMRpro

Ok ok I will be good. Trying to make food preparation fun instead of a chore.

Thanks for advice

HeronNS profile image
HeronNS in reply to

I find that an apple satisfies my appetite really well. I like some of the older varieties which have less unpleasant waxy skins than many modern industrial ones seem to have; they look tougher, often have a greenish colour rather than bright red, but they are really pleasant in flavour, like golden russets, cox's orange pippins, or, if you can fine them where you live, gravensteins. All of these apples when ripe are sweet without that strange bitter undertaste that you get in some modern apples or the tooth grating sourness of a mac, and more flavourful than, say a grannie smith or even a honeycrisp. You can probably find local heritage varieties in your neck of the woods. I quarter them, take out the core, cut again so I have eight segments, and eat them one by one. I don't know why an apple should be particularly satisfying, but it is. If more calories or a bit of protein are wanted at the time, a few natural nuts, like almonds or walnuts, are good.

in reply to HeronNS

Yeh I love apples. Sebastopol is the town next to mine and they are known for their Gravensteins apples. We have lots of agricultural land surrounding us.

When I was on weight watchers I remember one of the meals I would eat was 1 1/2 oz cheddar cheese sliced and a sliced apple. It was yummy.

HeronNS profile image
HeronNS in reply to

For many years my lunch would be melba toast, cheddar cheese and an apple. I remember when I was at library school a girl from BC looking at me with pity and wondering why I was eating a tiny little russet green apple instead of a brash rosy red mac. I brought her a russet to taste and she no longer felt sorry for me! 😎

Insight329 profile image
Insight329 in reply to

Diagnosed: GCA in May, 2017, USA, 15 mg Pred.

I'd like to encourage you to consider a low carb/no sugar diet. When I joined this group, that was a suggestion that I was given (by many members). Oh boy, I did not want to hear that. Every tooth in my mouth has "sweet tooth" written on one side. The backsides are stamped with 'pasta', 'pizza', 'bread'. But.... I followed their advise and I have to say that I'm so grateful to have received it and happy to have taken it. Here are the benefits that I've gotten: I've lost almost 30 pounds since May. (I know weight loss is part of GCA so not sure how much is from diet and exercise, but I'm going to take credit for some of that weight loss.) I've been taken off the 'diabetic' list that I was put on in February and am now listed in the middle of the pre-diabetic range. I've had absolutely none of those crazy steroid cravings. I feel better -- I don't have those carb/sugar high/lows. I don't feel as sluggish as when I ate carbs. Do I still crave them? Not physically. That left a couple of weeks after my diet changed. But mentally? Sometimes. And in those extreme times, I allow myself to have whatever it is that I'm 'dying to have'. But if truthful, after I've had it, I've found that the anticipation of it was much greater than actually having it. So, if you are saying "Oh, I couldn't change my diet that much", please know that it's possible and I think you'll find it a lot less of a hardship that you might imagine. Give it a shot! What have you got to lose? (Answer: weight, cravings, diabetes, etc.)

PMRpro profile image
PMRproAmbassador in reply to Insight329

I'd love to frame this comment and hang it on the forum "wall"!!!!

Insight329 profile image
Insight329 in reply to PMRpro

Thank you, PMRpro, it be my ‘truth’.

Soraya_PMR profile image
Soraya_PMR in reply to PMRpro

Ideas for when you simply must have something sweet:

Prunes, they strengthen bones (thread on here somewhere)

Dried apricots, give you a nice dollop of potassium and magnesium.

High percentage dark chocolate. No it’s not particularly sweet, but it will satiate the craving.

Good luck Lin, you sound very positive 👍🏼

in reply to Insight329

It truthfully is I am a lazy cook. I dislike being in kitchen. It is so much simpler to have toast with peanut butter or a bowl of cereal.

I don't care what I eat I want fast and easy.

So, just now I cut up some peppers n onion and threw them into a skillet then pulled out the crockpot and put in some 7 beans variety w chicken broth n water n will see how it turns out. Oh I put lots of spices in it.

Today is our first rain which I love...

Now I am wondering how long it takes to cook. And hopefully it will be eatable.... guess I will find out.

Oh I already have the chocolate And usually forget about it. It only take 2 squares to satisfy so it last quite a long time. I never sit down with the entire bar because then it is remote eating which is not satisfying so always break off and put it back in fridge.

Insight329 profile image
Insight329 in reply to

Ha! I totally can relate to being a lazy cook. I used to love to cook. Would throw parties just so I could cook for people. Lately it feels more of a chore. So, I tend to make recipes that give me multiple bangs for the buck, ie soups, roasts, etc. Things that I can eat a couple of meals from and freeze the rest. I’ve been using my crockpot a lot lately. And I’ve rediscovered my love for salads. Those bowls filled with different types of greens - romaine, watercress, leaf lettuce, arugula, spinach, and topped off with as many veggies as I can find in my refrigerator. Add a protein and I’m good to go. My favorie find is at Whole Foods - Organic Girl Super Greens found in the produce. It’s a mixture of 5 greens. I get a package of watercress to throw in with it for the added benefit. If you like greens, check it out. Hope your beans turned out well. So glad you are giving it a shot! That first step is always the hardest! Best wishes!

PMRpro profile image
PMRproAmbassador in reply to Insight329

Yup, ditto, ditto! I used to cater dinner parties for 30 people without turning a hair and enjoyed doing it. Since PMR I can't be bothered - I can't even be bothered to read a recipe with endless ingredients! More than 6 - forget it!

In winter I use my tiny crockpot to get at least 3 meals for one lot of effort. Same making a meat sauce for mousakka, lasagne made with sliced courgettes/zucchini etc in the summer. One biggish cook - at least 3 meals there in the freezer for a minimum amount of work - I freeze the sauce, make the dish fresh though.

in reply to Insight329

The beans came out good. I also cooked a whole bunch of chicken tender n they are pretty good. Today it was simple ... micro the beans n then later a couple of chicken tenders. An apple and then some fresh spinach. Easy peesey ..

Gonna do more crock pot cooking now that it is turning cold.

I love green salads the only problem is it doesn't love me. I will give it another try since our bodies are always changing. I will make a smaller portion to start. I use oil n vinegar with lemon pepper very good.

Thanks for suggestions ....

PMRpro profile image
PMRproAmbassador in reply to

When you introduce any new food don't binge on it. My mother always claimed she couldn't eat fruit - it was only because her body wasn't used to dealing with it. When she started with just 1/4 of an apple and then increased the amount slowly she was fine.

Jackoh profile image
Jackoh

Can't comment on medical side but glad that your complex was intact after fires and that you survived your stay with your sister! Best wishes.

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