anneinco
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Posts posted by anneinco
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9 hours ago, Rockhopper said:
That level of interference with everyday functioning is pretty alarming. I'd definitely be pushing hard to get answers, and I'd encourage you to look at the situation very globally -- not just hormone or vitamin levels. How old is your dh? Did the doctor do some cognitive tests? CAT scan? Is there anything particularly stressful going on that could be at the root? Could he be depressed?
I think there is some anxiety and depression involved but I don’t think that is for cause. I think it’s a vicious cycle of feeling crappy and worrying about it and that compounding the issue... if that makes sense. He has had similar things throughout the years but never close to what he is going through now. He is actually having to really focus at focusing on what he is doing.
He is 43. Dr did a counting backwards by 7 (dh sucks at math) and then a balance test with eyes closed and a couple other tests with strength. MRI is being scheduled.
He has a couple/few weeks left on current project (self employed and thankfully everyone has been understanding and accommodating) and then I told him we will take a week off and do something that has nothing to do with work. We will see if that helps at all.
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5 hours ago, lailasmum said:
I've just gone through having a load of blood tests because I had every hypothyroid symptom. Turns out its extremely low ferritin and pretty low b12. I've had this before and felt different so that was what made me think thyroid but it's turned out not to be.
Can I ask what level they flagged as low for b12? He was either 419 or 491.
3 hours ago, Ellie said:It isn't enough to have the correct labs (and yes, Free T3 and Free T4 are vital, and yes, they must be within *optimal* range, not "normal" range). The difficulty is getting the proper treatment. ?
check out Stop the Thyroid Madness.
First step is finding out levels. Frustrating that doctors won’t learn more about what’s really needed for testing. Have someone giving me the name of a naturopath if we need or we search for someone who knows what they are doing. Will read the link when I get back to the hotel.
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13 minutes ago, Toocrazy!! said:
I'd check b12 levels with those symptoms.
I will also add that this was on my short list of things for the dr when I went with him last time. Dr did say that metformin could cause b12 to not be absorbed properly. Need to do more research and see if it’s somethkng we can try to address at home or need to talk to the dr...
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20 minutes ago, gardenmom5 said:
TSH is considered a mostly worthless number for treating thyroid.
Free t3 and Free t4 are far more important. you can find online what the optimal ranges are - and you want *optimal* not "normal".
tsh is a pituitary hormone - not a thyroid hormone.
Honestly that is what I am finding out but need to show my husband more proof so thank you that will help. I did find a lab here that we can order tests online and go in for the draw.
At this point I just want answers. Do I want him to have a thyroid problem... no... but if it explains what’s going on, then we go from there, if numbers are in the optimal range we cross it off the list.
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5 minutes ago, Toocrazy!! said:
I'd check b12 levels with those symptoms.
I need to double check his numbers. They were on the low end of the range if I remember.
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22 minutes ago, dmmetler said:
I have found that high blood sugar or low blood sugar can make me have the same symptoms that the thyroid does, so since you mention metformin, it might be worth it to look and see if that dose is right, too, preferably by a few days of continuous monitoring.
He is monitoring his sugars and has regular tests done (A1C?). I want to say he was 5.9 on last labs. Currently not on any metformin for 2-3 weeks, but he had been on it for at least a year. Symptoms fluctuate through the day (doesn’t appear to be tied to eating or taking meds).
Other thing that has possibly changed but I need to see how quickly a change would be noted. He was part of a diabetic study and was either taking Vit D or a placebo. That study stopped so he stopped taking whichever it was. However another doctor (also was just diagnosed and autoimmune disease) started him on Vit D a month ago so I would think we would have seen a difference.
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3 minutes ago, Pawz4me said:
Most traditional doctors and endocrinologists go strictly by TSH. But yes, it's very possible to have a normal TSH and for your actual thyroid hormones to be way off, or for the reverse to occur. DH's cancer treatment can affect the thyroid. For the past couple of months his TSH has been quite high, but his T3 and T4 are both in a good range and he doesn't have any thyroid symptoms. So his doctor (oncologist) is just keeping an eye on it. On the other hand I was diagnosed when my TSH was "only" 7.6 (lower than DH's has been) and I felt absolutely awful. I suspect my T3 and T4 were way out of whack, but I don't know for sure since my doc at the time (and my current one) only go by TSH.
His is like 1.3 and I think I read metformin can lower it. He’s willing to take info to the doctor to ask them to please test more but is leary without enough evidence. So I am researching and trying to find enough cases that say we want more tests. I mean it’s just blood, right? I’ll pay out of pocket if I have to. Rather have it come back negative than a year from now find out that is what is causing issues
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Has anyone had normal thyroid tests results (tsh and antibody) yet still with more tests have thyroid issues?
Husband is having issues and results on these test have been normal yet I have people (who have had thyroid issues) telling me those aren’t the tests that really need to be ran. Doctor says the endocrinologist disagrees.
All other blood work looks decent. Issues: Brain fog, mood swings, disorientation, lack of focus, thought process scrambled... seriously interfering with work. Heart rate was high for a while, low for a little weeks later. Metformin and lisinopril were stopped 2-3 weeks ago and issues have not improved.
Any help? He’s starting to really worry since it’s creating issues with work and we are self employed.
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double post
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11 minutes ago, gstharr said:
i see no harm in asking. reminds me of my final in a micro econ class. The test was brutal. Something like 1/2 the class got a "D". I was exactly on the line for a "B'. The professor said he did not realize how hard the test was. So, he added a few points overall to all scores. Most of the bottom 1/2 got to a "C". A couple of students who had a B-plus got bumped to an "A". The points bump did nothing for me.
Thank you... I think we will role play how to bring it up and why she feels it is wrong. I looked closer at the second test grade (she has not had it handed back yet) however she (and probably others) had the highest points on it.
9 minutes ago, EKS said:I think she should ask. The problem might be that the teacher's grading software forces her to make everyone's test be weighed the same. I would think she could find a work around, but it might take her extra time.
I think this was the issue but am hoping there is a work around.
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So, this could end up not being an issue but I want to start coaching my daughter on how to approach the teacher to discuss this in case she needs to. She is down to 2 weeks of school so it would need to happen soon.
She is an 8th grader in a geometry class. She is taking it for credit so her grade does matter. They took a test in class last month that should have fallen under 80% weight (based on all other tests this year). However, the teacher allowed everyone the option to retake it at home due to low grades on it and then she put it under 20% weight. My daughter nailed the test in class, even earning extra credit.
Her second test, taken this week she didn’t do as well on (84%) but does have the option of retaking. She will retake and should be fine to bring her grade up. (She would retake no matter where he semester grade is at).
Not taking into consideration her retaking the second test, does she have a fight that her first test should have been weighted at 80% (therefore putting her semester grade at like 97%) or is it tough luck (therefore her grade is 88.5%)? I am not sure my daughter would have caught the grade being filed under a different percentage but she does understand the effect it has in her grade.
If she should talk to the teacher should she do it now, or wait til after she sees how her retake goes?
Update: She talked to her teacher after class Friday and found out she wasn’t the first to be concerned. The teacher is going to wait til end of the semester and make a adjustment to balance the gradebook so she ends up with a solid A. Teacher also agreed that she doesn’t need to retake test 2 to keep an A. She missed one problem, the other two she missed points on she had a mind fart on the term for the written explanation but knew it the second she got her test back, or had a very stupid mathematical error.
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Oh no! Was just regretting not ordering my books earlier in the week when I ordered them last night.
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Texting on the number keypad though vs a keyboard...
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I just talked to Verizon a couple days ago and they do have two flip phones that do allow calls and texts.
I want a third phone for the house when I am not here or for my daughter to take when she will be away from home a lot. She's almost 14 but I don't want her having a smart phone yet.
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I have no ideas for you, but I'm very sorry this is ongoing. Still, he is hanging in there and that's a good sign! I'm glad his pain is better. Please keep us posted. Hoping for the best!
Thank you! Just hoping that maybe someone suggests something that hasn't been tried yet. Really worried about permanent damage.
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Okay... Any more ideas?
Waiting on spinal tap cultures, we are almost 48 hrs into that and I was told it could take up to 72 hrs. Testing for a crap load of things. Preliminary showed elevated white blood cells. MRI showed inflammation around ventricles. They are already treating with 4 major antibiotics for almost 36 hrs and not seeing much improvement. Hoping cultures show something that we can pinpoint and treat.
Fluid pulled from knee last night. Infection was present, but not at level they would expect. We are waiting to find out whether it's gout or something that can be drained. Looking at my sister's notes she has 50-100K = infection or gout, he is at 40K
MRI with contrast was not possible, double dose of Ativan and he was messed up and unable to lie still. Going to see what the next move is.
Still some hallucinations, speech still slurred, but when not foggy appears to be cognitive and aware, but still not right. Pain is a lot better. Still has not gotten out of bed.
Doctors starting to say this might not be reversible but it's good that we are seeing it wax and wane, and I am assuming the fact we see inflammation on MRI is a sign something is still wrong and causing the issues we are seeing.
Edit to add now that I have talked to nurse. White blood count increased from 11 to 15 over two days. Depending on what we find with the knee and spinal tap, wondering if next screening should be cancer?
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I can't remember the time frame exactly. But, he was able to go home in about a week, and my mother is doing well enough that she could assist him so the two of them could be on their own at home. He used a walker for maybe a month, and then a cane, and then just a cane at night. I think he still uses a cane at night. I think he was driving again in about a month, and probably back to doing most things he was doing in about three months. He worked hard at walking. He started by just walking up and down the hall every day, and then 25 yards at a stretch, then 50, then 100. Now he and my mother try and walk about a mile daily. His balance still is not perfect, but he does okay. He is definitely building up his muscle tone again. He is determined. I especially have seen improvement after he began both meeting with a physical therapist regularly and doing some exercises at LA Fitness regularly. (We got him the gym membership for a Father's Day present.) A couple months ago, he couldn't walk 1/4 mile without hurting all over. Now he can walk almost a mile, slowly of course. I can see that near the end of his walk, it's not easy, and he is limping. But he continues to feel stronger. He is back to leading tours at a metropolitan museum and delivering meals on wheels to the elderly! :)
Thank you.
My sister got the discharge call today. She told me early that based on blood draw on 9/12 the infection is clear, but IV antibiotics will continue for two weeks. My sister was the joints addressed and the slurring before we leave so hoping to get a neuro consult for a MRI of head, and a test done on knee to see if there is liquid...
Discharge will not be to home. Can't remember what she said but high level rehab center.
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Yes! Absolutely! Sepsis, by definition, is infection spreading in the bloodstream, and it can go anywhere in the body and cause pain. Fever also causes body aches, and if he has any arthritis, the aches are magnified. My knees always hurt when I have a fever. If they can get the fever down, then his pain might also go down.
This is actually encouraging... Not that I want him in pain but hopeful that it is due to the sepsis, not an injury to one of the falls (mainly concerned here with right arm).
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This is exactly what I was going to say!
I am a fairly new Financial POA for both of my parents. These are the things I could not do without it:
sign checks
talk to the cable company (seriously!)
put his pension check on auto deposit
talk to AT&T (another really weird one - I actually have to present the POA papers in person)
hire anyone to perform routine maintenance on their house (it needs a new roof, owners have to sign papers)
talk to Medicare or the VA
If it hadn't been for being able to set up auto-draft online for their utilities, their bills would have gone unpaid for several months while we got things lined up with the lawyer.
In addition, without POA, you will not be able to buy or sell any property, including real estate, automobiles, boats, etc. - this could become an issue if he goes to a nursing home.
Also have the social worker talk to him about an Advance Directive for Healthcare. It is an opportunity for him to state what types of interventions he wants through answering a series of questions. It then has a space to say that if he is incapacitated, who he wants to make decisions about his care on his behalf.
When he recovers, connect him with an attorney that specializes in elder issues. We did this for my parents and the attorney has been worth his weight in gold! It's been a really good experience and his office is doing quite a lot to help us make sure that their affairs are in order and to help us change their living situation a bit. The attorney's fee isn't cheap, but he has saved a lot of money and anguish.
Feel free to PM me if you want to ask any specific questions about how it's working out.
ETA: I listed all of those things I couldn't do to make a point, then I forgot to make it! When my parents realized the sum of all of the things that were going on that they could no longer take care of, they were more than willing to sign the POA's. Sometimes the practicalities just have to hit home and having the social worker talk to him about what could happen might be helpful.
This is why I am slightly panicked if he doesn't have one.... I have one for my MIL so I know how valuable it is. I also know that currently we are in no position to get on drawn up.
However, he is a smart guy, has a trust set up, so my fingers are crossed that between him and the attorney, there is one... My sister does not understand the importance, and is too stressed from trying to make sure he is taken care of in the hospital to take time to understand it. From what I hear, if needed and he was incapable of making the decision (health wise not because he didn't want it done), we would have to go to court and who knows how long or how much $$ that would take.
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I'm sorry, I don't really have answers but my father went through something similar last winter. He went from feeling mildly sick/flu-like to being completely incoherent and unable to stand up the next day, taken by ambulance to the ER where we weren't sure if he'd survive. In his case, they discovered pneumonia and dehydration and a partially collapsed lung, which then turned into heart failure. We couldn't believe how quickly it happened.
Once they got things under control, and because he had been in very good health for an 88-year-old, things slowly turned around. However, my brother -- who is a doctor, flew in from another part of the state to offer insight; he caught things that the staff there were not catching. It was very scary. So don't be afraid to step in and assert yourself if necessary. If the brain CT scan wasn't clear, hopefully they'll do an MRI.
My father is healthy again and back in his home, thankfully. The toughest part has been regaining his balance and muscle tone after that. It really knocked him down for awhile. He continues to see a physical therapist and goes to LA Fitness almost every day. He is slowly getting better! It's been about half a year now.
One thought about the POA is that sometimes hospitals have POA forms right there that you could look over with your father, if he is cognitively aware. You could always ask a social worker to be the one to bring it up. On some POA forms, I believe you (meaning your father) have the right to check what you're comfortable with signing over to someone. So, that might help him feel better about it as well.
I hope everything goes well for him!
Can I ask how long he was down for? Til he was healthy, and then balance/muscle tone?
I know everyone will be different but I am expecting a long recovery especially due to issues with knee and muscle tone in one leg to start with. He is already well aware of this, which I think is the first step. He told my sister that he was told it would only take a week off his feet to knock him out and we are starting on week two and he can't even sit up due to pain.
I have a double whammy in that I also care for my MIL full time. She will be in respite while I am down there for a few days so now I am trying to figure out financially how I am going to balance this if I need to be going back and forth. We are self employed with an employee and trying to at least not have to put that on hold if at all possible.
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Some random medical thoughts:
My first thought is a septic joint with the painful knees. Have they checked for that? It would require a joint aspiration.
Does he have gout? Could be having an attack due to the dehydration and causing the knee pain. (Needs uric acid level checked).
Has he had a spinal tap to check for bacteria causing meningitis?
Tested for west nile virus? (flu like and neuro symptoms/encephalitis)
Have they actually tested for the flu?
If he's stable, an MRI of the brain may be a reasonable next step if the CT wasn't clearly evident.
I hope they will repeat the chest xray in case the pneumonia wasn't showing up on the first one yet. Sometimes it can take a bit to be evident.
On the POA issue, since you are right there you will be able to make medical decisions since you are next of kin, should be become unable to answer for himself during this hospitalization. You should talk with the social worker there, they can guide you through the steps to get the ball rolling on the rest, or be able to help you find out if this has already been done. Perhaps he will open up to her about this issue, if he doesn't want to discuss it with his daughters.
I will keep these with me and discuss with my sister. I want to say they ruled out septic joint, however, the procedure you mentioned does not ring a bell. Not sure about gout but he was never forthcoming about his medical history.
Not worried about medical POA just financial. Just in case something goes wrong. I don't want to fight with the courts and go through that battle. There is a very decent change there is already a POA if he has a decent lawyer, just need to make sure its current (mom died 4 years ago). Good point about social worker. He is the last person I want to burden its questions right now... stress-wise and not sure he could handle it mentally right now anyways.
If nothing else, this is giving me a good life lesson reminder to get affairs in order no matter what age.
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I am sorry your dad is so sick, but is sounds like he is getting good care in the hospital.
Sepsis can turn a vigorous senior into frail elderly overnight, and can temporarily change their cognitive ability too.
The good news is that treatment and physical therapy can help him return to health and activity within a reasonable amount of time.
I am not sure that now is the time to ask about power of attorney as he is likely in no shape to make a rational decision; I am sure someone with more experience in this matter can lend some advice.
I hope he gets better very soon! :grouphug:
Thank you for your reply...
Can sepsis cause the extreme pain he seems to be having (legs) and the pain in his arms?
Not planning on asking him about POA at this time, but if I can track something down I can at least put my mind at ease. I honestly don't care whose name is on it (unless its only my moms because she passed away 4 years ago) I just want to make sure someone has permission to handle finances if needed. I don't even care about health care proxy because I know we can speak for him now if he is unable.
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My sister and I are reaching out for ideas... I am heading down Friday.
My dad is currently on day 4 in the hospital. Entered Sunday evening. She talked to him Friday and he said he had the flu since Tues or Wed. She went to check on him. Fever was 101.9, not able to walk, excruciating pain in bad knee. Saturday he seemed better but still not willing to walk. At some point he tried to use a walker (not a normal tool for him) and fell twice, according to my dad.
Sunday she got a call from him and something was off. (This is the first I heard something was wrong) She went over, he was acting delirious and seeing things. At this point it was decided to take him to the ER. He was sweating/short of breath. temp was 102.8 At hospital HR was 108.
Seen and admitted to Cardiac Care Unit where he stayed until Tuesday night when he was transferred to general. HR under control now by meds.
Speech has been like he has a swollen tongue (normal for about 15 mins Monday)
Tuesday seemed better with the delirium, but worse today (however he is on morphine due to lots of pain in knees) unbearable pain Wednesday when PT tried to sit him up.
Pain in both arms, using left hand to eat/write and he is right hand dominate
asking for a neuroconsult
What we are being told:
He was septic upon arrival and very dehydrated.
do not believe a stroke
Bacteria in blood
test for UTI negative
Catscan of abdomen clear
X-ray of chest clear
ultrasound through esophagus looking at heart valve showed no infection
Catscan of head clear (mixed messages on this. trying to get another opinion)
X-rays of legs/arms taken, and they are clear.
Any idea where to go from here? What questions to ask and tests to ask for? Sister is being told that they are proceeding day to day. He has been off his feet for about a week now, and was weak to begin. Most likely will be in rehab center once he is cleared from hospital.
She is finding they are seeing him as a 'frail elderly man' and are absolutely shocked he lived by himself up until this and had driven cross county 3x in the past 6 months.
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POA question...
Adding this on here because I think the above is possibly helpful. We have no clue if he has power of attorney financially or medically. He has said in the past he does not trust either of us due to the fact he does not like how we 'handled' treatment at the end of my mom's life 4 years ago. We sided with him on treatment however voiced concerns (she was terminal and we questioned prolonging).
My sister is dead set against even discussing this right now, and I think it is necessary, especially financial POA just in case. My aunt (his sister) is out of the country for a few more days and I am hoping she knows whether he has a POA written up. She knows nothing yet.
I don't know if I can call his lawyer (assuming i can find out who he is) and ask if there is even one filed? I think my dad will take it the wrong way but I am not sure he is in condition to even question... My biggest fear is if there is not one and something goes wrong, is the time and money to fight it in court to get access to his money to pay bills/help him.
What else do I need to worry about when I am down there?
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Thanks for the info on the oats. While the time might not be be shorter (for the longer time) I won't have to remember they are on the stove (I don't stir except near the end when I'm checking how much time is left. Could almost set it up and go back to bed for a few minutes lol
Help with diagnosis... possible thyroid?
in The Chat Board
Posted
Don’t think VitD was checked but one Dr told him to start taking it and I believe he has been (a few weeks now).
I’ll make note of the ultrasound suggestion.
I am not 100% sure. Do you know how it’s listed on lab reports?