This tough old woman with diabetes not so tough now

Type 1 and LADA
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This is more of a vent than anything else, but helpful kind advice appreciated. Warning this is long, very long.

6 months ago I was riding my exercise bike 10 miles a day and felt great. 3 months ago I could ride 7 miles about 5 days a week. I have been hypothyroid for decades. My FT4 measured low.

My GP didn’t want to give me more than 2 grains (120mgs) of desiccated thyroid, so we left it alone. I really like my GP.

About a month ago I really slowed up, and had a Cologuard test come back positive. I’m was trying to avoid my 10 yr colonoscopy.

During the past 3 weeks I have passed out twice from hypoglycemia with my husband saving me. Both caused by combating unusual highs. My easy to treat diabetes has become a nightmare. I am taking lots more insulin than my usual small doses.

Both times I fell, I damaged my ribs. I finally realized that I had a bad infection and started on meds for that. I still have it, but it is better.

Oh, here is the kicker, my blood studies show that my white and red blood cell count and another important cancer marker test are falling. So somewhere I am losing blood.

Colonoscopy is being done on Sept 30. The Cologuard test is a very good test, but it picks up everything. What is scary are the falling blood cell test results.

So yesterday I went to the cardiologist who had 3 posters about LDL in his examining room. He was in a hurry, I wasn’t. I didn’t even get to tell him about the poor CBC result until the end of the 10 min visit.

First he said that my cholesterol levels are good for a non diabetic. High HDL, very low trigs, an LDL of 126, but for a diabetic with 10 yr old heart stents, the LDL showed that I was going to have a future heart attack. WHAT???

I explained that I have contacted the FDA because of the horrible neuropathy in my feet. With Zetia the neuropathy started as soon as I started this drug and left as soon as I stopped taking it. Then I tried a tiny amount of Crestor. The neuropathy started again. It didn’t go away when I stopped taking Crestor.

If one reads the literature about these meds, this info is in there. The cardiologist said that I should never take another statin or red yeast rice because it did the same thing. He also said that he believes that the neuropathy is caused by my diabetes. My husband said that I then became very assertive insisting that it was not my diabetes causing the neuropathy and that it is in the literature about the medications.

Anyway this by the book cardiologist said that I should take the newer injectable cholesterol medication which I don’t want to try. He prescribed a very strong fish oil that I filled and will try.

He then said that I am tired because I am having heart failure!!! I am having a medically induced stress test as soon as it can be arranged. I passed the nuclear stress test last Nov with flying colors. See continued post if you are still with me.

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Meds (any med, including the ubiquitous aspirin can have side effects) often have unwanted side effects. I had trouble with Pravastatin (brand name Pravachol) causing elevated liver numbers and extreme leg weakness. The weakness occurred within less than a year or two of taking it, but the liver numbers took 5 years or so to go wonky. thankfully, within 2-3 weeks of stopping it, the liver numbers resumed normality. We must always be vigilant about symptoms and correlations with the drugs we are taking.

Sorry to hear about your heart troubles–that’s got to be scary. I hope it is somewhat manageable.

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Hang in there and keep us posted. Colonoscopy will be a breeze. Just had my latest done a few weeks ago and I was amazed at the progress over the years. No pain, was lucid and talking with the nurses and doctor during the procedure while watching the procedure on monitor. They really have great drugs now a days. The very worst part is the prep which starts several days before procedure.

You are a tough old bird, we know it, you know it and you will have this sorted out soon and most likely outlive us all. Stay positive!!!

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Marilyn - your visit to the Cardiologist doesn’t sound like it was pleasant.

There are any number of reasons your cell counts are diminished (low), and most of them have nothing to do with cancer (although for some reason that seems to be what we all think when we’re advised of low counts).

– Infections that affect the bone marrow are a common reason.
–Anemia (and low cell counts) of chronic disease. This is what they used to call mine and I think it’s a lazy way of saying you have chronic disease(s) and we’re not going to investigate any further.
–Certain immunosuppressants (I’ve been on a drug for 10+ years that causes red + white cell counts to be low, and my regular practitioner wasn’t even aware of it).
–Nutritional problems (not enough B12). Without meat and eggs in your diet you’re likely B12 and folate (B9) deficient.

All of these would account for the malaise and fatigue you feel.

With respect to the “heart failure”, are you experiencing difficulty of breathing and/or edema (especially in lower legs and ankles)? I have CHF and it took me 2 years to feel better (changed my diet, went back on diuretics and started exercising every day). The stress test should show you what’s going on.

It’s normal to fear the worst, but I’m sure in this case the cause(s) will be something far less serious than he led you to believe. Hang in there

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Find a new cardiologist.

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Thanks so much Jim. I too thought the levels were because of my vegan diet. I do take B12 and just had a test result in the mid range. Folate and D3 levels are fine too. I actually told the doctor not to worry about my falling levels in June’s tests because of my diet. I had him take the B12 and D3 test again.

He said to ignore the WBC although low, because it can jump around. My RBG,HGB,HCT, are all lower than the low levels they had reached in June. My sodium sodium level is walking dead low.

Yes, I definitely have anemia, we just don’t know the cause.

I don’t take any prescription meds except for a BP med and a thyroid med. I take several supplements.

My GP did mention a bone marrow infection maybe being the cause. I didn’t like the sound of that either. Of course I have no idea what that entails.

He also told me about something else that he said that I could research if I wanted to but that he has only seen one case in his 35 yrs of practice.

No, I have no signs whatsoever of any symptoms of heart failure. He reminded me that I was just starting a hike when all of a sudden blood couldn’t get through a couple of arteries. I had just become very tired and my arms became very heavy. Except for the fact that I needed two stents, my heart was fine. I have never had chest pain, or edema etc.before or since. I don’t get breathless. Now since I haven’t been riding my bike I am sure I would get out of breath walking up a hill, but I am out of shape now.

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Oh Gretchen,

Should I tell you how many I have tried and dumped in the past 9 yrs? Cardiologists are few and far between and a large town is 2 hrs away. Most belong to the same practice. I haven’t tried Portland Oregon yet. The second cardiologist I saw after getting stents could not believe that I had type 1 diabetes and that I had had it for 50 yrs. He told me that he bet I was on my way downhill after that. Well I have made it another 9 yrs with diabetes and I hope to outlive him

When I told my GP a couple of the things the cardiologist said, he just laughed and said, “well, he has never met a diabetic like you before.”

I have found all cardiologists to be rather obnoxious. Got to love my GP though.

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If you’re sodium is low, you’re exactly like me. After 2 years I finally remedied myself by buying the proper electrolytes, which I take first thing in the morning.

I got some SaltStick capsules from Amazon, and they’ve eliminated the total fatigue and weakness I’ve suffered from for so long:

You might be able to get them at a local running or workout supplement store if you don’t use Amazon.

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I don’t like Amazon, but since we live in remote areas, we use them. I will order this supplement. Thanks Jim.

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Sorry to hear you are dealing with these health issues. It can be really, really difficult when multiple things hit you at once. I went through a period at the end of last year and beginning of this year where I could barely function. I was dealing with four or five issues at once and really do not know how I made it through each day and continued working. Fortunately, I’m feeling much better over the past couple months. Still dealing with new health issues popping up. I have come to just expect that at this point. I’m in my late 30s and my medical records are already to the point that some doctors say, “Wow, to say you’ve been through a lot would be an understatement!” when I walk in. I’m sure things will look very interesting by the time I’m 90! Give yourself some time to take it easy if you need to, and hopefully as you sort out what is going on and get treatment, you will start feeling better and more in control. By the way, I find that thyroid being high or low (or changing levels rapidly) wreaks havoc on control. During some of the periods where my thyroid has been off, especially when it was shifting from high to low, I was literally hanging on for dear life and my Dexcom saved me from several emergencies, I’m sure.

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So, there are so many things that could go wonky, and none of them related to diabetes.
I also had muscle pain and tendonitis after taking a statin. I am now on Repatha, an antibody to the PCS9 protein, and I am very satisfied with it. Try it for a month.
For the past two 1/2 years I have had extreme fatigue and shortness of breath. Tests indicated I did not have any blockage, but finally the cardiologist said one area was a little fuzzy. So they did a cath and I ended up with a 3 rd stent in my RCA. It helped some, but not much. My PCP, and cardiologists said it was diabetic cardiac autonomic neuropath; I insisted it wasn’t, as did my diabetologist. Mind you, I have been diabetic for 53 years at that time. After pestering for months they recommended I see a EP cardiologist, who a couple months later put in a pacemaker due to sick sinus syndrome/bradycardia.
I suggest you track your hr for 24 hours; the cardiologist should put on a Holter monitor to see wha your heart rate is for 2-4 days.
Mike

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Well Jen, you are a wonder to many of us. I hope that you continue to feel better and better. I am always impressed by you.

Maybe it is partly my age, but I get couch bound fairly easily. The last couple of weeks have been spent mainly on the couch. Mostly worried about these high blood glucose levels. I know that not exercising is affecting them, but usually a couple of units more insulin will balance things out. Now I am even raising my basil insulin a lot which I almost never do. Oh,that is right, I have an infection but it should be clearing up. So many balls to balance.

Oh yes, STRESS!! I have read here that managing diabetes gets easier as one ages. Certainly not for me.

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I imagine that less activity, stress, and infection combined could definitely increase blood sugar levels by a lot!

During my worst period I was pretty much sleeping any time I wasn’t working. And even at work, colleagues had to carry stuff for me and drive me places because I was so, so tired and weak. I’d literally fall asleep in meetings and on the bus. It was horrible. I’ve had two periods like that where I could barely function in the past few years…I’ve sworn if I get to that point again I’m taking a medical leave of absence.

I hope you get to the bottom of things soon, and I hope it isn’t something serious like cancer.

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Oh Marilyn, I am so sorry to hear that. Sometimes you have to go through the testing so things can be ruled out. It’s hard to know the answer. I’ve had several instances where doctors have screwed up, possibly with very serious consequences but I’ve been lucky. So I very much question what they’ve said many times. But I hold tight the ones I trust, understanding they make mistakes too and they have. The better ones are at least the ones that listen to you and take note of your concerns and address them.

I would not worry about your BG levels right now. Raising your goal level to even 100-120 will give you more of a cushion when you aim to adjust. When I was sick it took a lot more insulin and then all of a sudden it seemed to kick in and work and I had a bad low. If everything is topsy turvy right now I can see you getting variable results. I hope you get your Dexcom soon.

I also hope you get an answer and it’s a simple fix. It could be as simple as an infection in the gut that’s bleeding, that would account for anemia and tiredness, blood in the stool, higher insulin needed etc. I hope you find out soon. Try to find something that will relax you and you enjoy. So you can have a small break from the stress right now.

Much love and hugs your way.

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Thanks so much Marie. My GP is almost as old as I am, so I will be losing him eventually. He is even a vegan. He likes and respects well informed patients and told me he sees very few even in this university town.

I also really respect the surgeon who will be doing the colonoscopy. He is outstanding.

My feet are much, much better with the supplements you recommended. I am so thankful.

My glucose levels are just crazy. I am soo anxious to receive my Dexcom. I really liked the representative from Mexico but he turned out to be a real flake. After 3 weeks I contacted him and he had never contacted my doctor. He apologized profusely, and I said ok. I called after another week and he still hadn’t followed all the way through. I wasn’t as forgiving.

Now my info has been handed over to a third party and she said I should receive the G5 in about 10 working days with 3 months of supplies. Medicare and my insurance will pay total cost.

Maybe I have had to go through a horrible few weeks of glucose control so that I would understand how much a CGM could help me.
My diabetes just usually isn’t difficult to control.

I am spending a lot of time on my computer, watching compelling TV and reading light novels. And of course, researching when feeling up to it.
:heart:

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Marilyn - This all sounds trying and frustrating. I find discerning whether a doctor is trustworthy or not a very difficult proposition. All I can offer is to trust your gut, do your research, and listen to you husband’s perception of the situation if he’s with you at doctor visits.

I see a cardiologist in Portland but he definitely follows the standard protocol of throwing statins at cholesterol. I personally don’t believe there’s a cause and effect relationship between cholesterol and heart disease but I know that’s a controversial position.

I believe that lifestyle factors like exercise, good sleep hygiene, meditation, and good nutrition exert a much more beneficial effect on health than drugs. Now I know that sometimes meds are critical and useful but sometimes they are prescribed by a distracted and overworked clinician who needs to arrive at some solution in the short time s/he sees us.

Sorry for your health setback. Sometimes we can try to do everything right and our health still takes a turn for the worse. I hope your health luck will return soon and you start to feel much better.

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I will look up Repatha. I am so sorry that you have had different heart issues. I am glad that they eventually were sorted out, but what a wait.

4 or 5 yrs ago I started passing out after getting out of bed, if I didn’t sit on the side of the bed first. The cardiologist, one I actually liked, but who retired, said that it was a common issue for older people. Once I stopped eating an extremely low carb diet, it has never happened to me again. Anyway, that cardiologist ran many tests which included a 24 hr monitor. All was fine then. The only tests I have had since then are stress tests. It seems that unless I have a heart incident of some sort,I can’t get more than an EKG and if I am lucky a stress test.

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You don’t like Amazon?? :slight_smile: I don’t like Bezo’s politics, etc, but gee, we order from amazon on a constant basis and I live in a city of over a million. All the way from several-dollar-items up to big screen TV’s. Delivery is decently quick and for the $110 fee per year, there is no minimum for 1-2 day delivery. And if there is a problem, their support has always bent over backwards to fix things. For example we ordered dishes and several were broken. the let us keep the entire set and shipped us another one which arrived undamaged. We have had items not show up when their records show that an item wase left at our home. When we call they credit us the full price and say that if it does show up later just keep it and don’t worry. (What happens is their delivery people check off the wrong package as delivered–and another day it will show up. Had we known that we would have waited another day to call about a “missing package”. I’m not trying to cheat them) I can never ever complain about their service–it’s so much better than most companies’. I think by now we have bought over $35K worth of stuff. Last I checked some time ago, we were over $30K

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Hi Dave, I should argue with you because I would quit fretting about my health for a little while, but I am just not up to it.

I use Amazon all the time too. I wish I didn’t, because to say that I don’t like Bezo’s politics is an understatement. I do agree that they offer a very good service. I even contacted Bezo’s office several years ago over a lost package issue. I was tired of hearing the same old spiel from customer service. Almost immediately he issued a
large refund check to us.

Maybe when I am back to feeling good or not so dang scared, we can have a good discussion about this through instant message or I could give you my email address.

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My sodium sodium level is walking dead low.
Yes, I definitely have anemia, we just don’t know the cause.

What is the blood pressure medication you are on?

Sometimes, neuropathy and anemia go hand in hand.

“Neuropathy. In people who have a type of neuropathy called autonomic neuropathy, the body may not be able to properly signal the kidneys to produce more erythropoietin in response to anemia.”
https://www.diabetesselfmanagement.com/managing-diabetes/general-health-issues/anemia/

You mention HF. Are you saying you don’t have it? On what basis is that diagnosis being made? Have you had any tests like an echo or EKG? Any lab tests for it?

Out of curiosity, what’s wrong with Bezos’ politics? I’m in DC and don’t even know what they are! What I dislike is his market share of…everything. Too much power in one person. :slight_smile:

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