A year ago we posted It’s A No Brainer – High Calcium is Bad to raise awareness of one of the elusive neurological symptoms of Primary Hyperparathyroid Disease. The blog was linked to our Facebook page where many of you publicly shared your experiences with brain fog in order to broaden awareness, and understanding of, this aspect of primary hyperparathyroidism. Often pHPT patients who experience this symptom believe incorrectly, that they are losing their minds. We are grateful that so many of you were willing to be forthcoming by sharing your experiences in order to help others make sense of their own situations.
Why does this happen? A normal calcium level is necessary for our brains to function properly. With high and /or fluctuating calcium levels, the delicate balance is upset. Synaptic signaling is disrupted which means that the connections between nerves don’t fire like they are supposed to. The high blood calcium levels cause energy to fall, and memory and concentration to fade. Sleep is often disturbed: some patients can’t get to sleep or stay asleep, while others sleep all of the time and don’t feel rested when they wake up. This is all very frustrating and confusing.
Here are some of the responses that were posted to help those of you who are currently suffering from brain fog associated with pHPT . Perhaps you can relate….
1) I’m not sure if mine is brain fog. I cannot find words I want (dandelion was one the other day), I take longer to answer questions, or don’t understand questions people ask me. I have horrible memory.
2) Brain fog is very real with this diagnosis. My former boss and friend of over 35 years noticed it in me. After my surgery at the hands of Dr. Norman in 2011 I noticed an immediate improvement and so did she! Have never felt better and would not delay in making the decision to “go to Tampa. ”
3) Brain fog for me was not being able to remember the simplest things! My mind could not work fast enough to keep up with a logical conversation! Words, names, places all would escape me. I was no longer able to read, my comprehension was gone, it was fruitless! I don’t know how many times I would start the same book-just to forget the plot and characters!
4) I couldn’t keep track of what I was saying! I’d lose my train of thought always. People who know me finished my sentences. I couldn’t read and certainly couldn’t remember what it was I was reading. After the surgery everything seemed to get back to normal!! Don’t hesitate on the surgery.
5) Brain fog for me started with an almost sleepwalking feeling, not really noticing my limbs until i walked into something or stubbed my toe or opened the cabinet door into my head, and then it progressed to feeling like I really shouldn’t be driving because i was I felt like i was in a dream state or that I may fall asleep at a stoplight, and my speech got worse and worse, some days my Husband would just look at me until i could finish my sentence or try to guess what i was going to say. Also, if I was speaking and someone would interrupt me, I could not ever remember what i was talking about.
6) It could be anything from not being able to think of a word I wanted in a simple conversation, to losing the complete train of thought.. Or I could be shopping, go for the noodles, and have no clue where they were.( thank goodness for signs!) and it could happen when I was driving. I would know where I wanted to go,( having been there fifty thousand times) but couldn’t remember the way.. It would really throw me for a loop! I’d forget simple things, things I’d already asked.. It just varied, but it was very very real. When it came to speech, at times it was though my brain could not form how to say that word.. Like there was no connection between my brain and tongue. Really weird, and at times very frightening. Even though I knew why, lots wouldn’t believe that was the issue. I literally felt like I had cotton for brains sometimes.
7) I am still waiting for a successful surgery, but my brain fog became concerning enough to start bringing it up to doctors about 5 years ago. It has gotten progressively worse since then. Multitasking and having to quickly switch gears mentally are especially hard for me. My memory is terrible as well. One example: As an IT Support tech, I would frequently have to remotely connect to people’s computers remotely to run scans, install software, etc. while also taking incoming calls. I started having a problem of having these remote connections open to computers and have no idea who it was or why I was connected. It wasn’t long before people started complaining and my manager brought it up in my annual review. Another embarrassing aspect of it is when I am in the middle of a conversation and suddenly, not only do I not remember what I was about to say, but I can’t even remember what we were talking about at all. When that happens, I tend to try to quickly change the subject or find a way to stall until I can remember what we were talking about. Obviously that can be frightening and concerning, but my doctors tended to brush this sort of thing off as not getting enough sleep or something.
8) I was in a furniture store and could not figure out how to get to my bank across the street. Frustrating and embarrassing. I couldn’t remember how to get to my mothers house and passed her street.
9) I had my 1 large parathyroid tumor removed exactly one year ago. This is my primary symptom. While most other symptoms such as joint pain, especially in the knees are long gone, my foggy memory remains. The best example I can use is that it is so frustrating. Its like being a computer where Windows freezes up for 5-10 seconds and your mouse won’t even move. It interrupts my ability to function on most days. Other days it hurts too much to think literally so I just become disinterested or I give up on even seemingly simple projects to other people because I’m too frustrated to try any longer. I feel that I should be able to at least have a general capacity to think. My idea about this is that since I had my parathyroid tumor for around 15 years (much longer than many have their tumors) that much more damage was done over a longer period of time making the brain healing side of things a longer process if not impossible to ever get back to normal on that aspect of my body.
10) mine was very bad. i use to tell my daughter my brain knows what i want to say but i cant get my mouth to say it. or i would count my money and 5 minutes later not remember how much money i had. i would get in my car and forget how to get to the store or how to get home. i used to have to call my mom and ask how to make a meatloaf that i had made 100 times before because i had forgotten how to make recipes. i used to set a timer for everything. if i let the dog out i would set the timer if it was winter so i wouldn’t forget him in the cold. if i was filling the tub i would set a timer so it wouldn’t over flow. i did this for years and one day i was diagnosed with this disease. i was operated on feb 12th and i m finally seeing a difference. we all thought i had early onset Alzheimer’s. crazy huh
11) For anyone who has watched a love one develop dementia…that is what it is like.In my case, not being able to say the words I mean and stumbling over many words. I sometimes sounded foreign.Going blank mid sentence.I stopped talking to people because I had become so anxious about looking stupid.Forgetting how to carry out daily tasks such as washing my hair or even how to drive.Not being able to concentrate.Definitely one of the scariest symptoms of PHPT.I was a 30 year old thinking I had dementia (my nan went through this possibly due to undiagnosed PHPT and further complications)But on the plus side, as bad as I was, now 5months post op I can walk again, talk again and my driving is back to awesome 🙂
12) Forgetfulness, difficulty finding the right words to say…not as mentally sharp as I once was.
14) I felt like I was losing it! I am now 6 months post-surgery and am feeling soooooo much better mentally and physically! God Bless the Norman Parathyroid Center – one of the best decisions I have ever made!
15) For me it is several different things. A lot of the time the information is right there but just being blocked. And other times I just lose all thoughts. It’s very scary and frustrating. Many times very embarrassing especially at work. I look like an idiot or space case. I feel like times I just go blank and other times like an opaque shower door is in the way of my brain as I fight to get the information I need but not always able to get. I forget people’s names who I’ve known for many years. I start to stumble over my words, stutter and slur them. Many times I can’t name a simple everyday object. I know what it is I just can’t say the word so I give up. I just go completely blank. I say and um and um a lot. Concentration is very difficult and memory sucks. Sometimes I just sit not thinking and not doing. It sucks. It’s honestly kind of hard to explain. It’s so much more but I can’t give the explanation justice. It’s so much more than leaving the iron plugged in. Things that are always automatic are not always automatic. For example There have been times when it takes me a moment to figure out how to use my windshield wipers when I’ve been driving the same car for 8-10 years…
16) I felt like my vision was always blurry. I couldn’t think clearly or remember where I put things or where I was going. Many times I would be driving and not remember where I was going and I would have to ask the person with me to remind me. I would even forget the names of people I have known for aping time ( it is 8 months since my surgery n this still happens but not as often) .
17) I had bad brain fog. No matter how hard I tried, I could not get things straight. Couldn’t “absorb” what I was hearing during a conversation, or remember what I had read. Start to say something and lose my train of thought. I had trouble doing paperwork that I’d done for years. Zero ability to concentrate. I had no thought process. Had trouble actually saying words. On occasion, I have actually felt like I had “lost time”, if that makes any sense.
18) I would be talking to someone ,and right in the middle of it, I would forget the right words to finish and would just stand there looking dumb. Had to write everything down because I couldn’t remember things.I had my 2 tumors removed June 2014 by Dr. Norman after having HPT for at least 16 years. I still have a lot of that brain fog.
19) It really came home to me that something was really wrong when I was going to pick up the mail from our PO box in town- about 3 miles from our office. I had been making this daily errand for over 45 years! It involves a drive down only three main streets. I had made it down two streets when suddenly I realized I absolutely had NO IDEA which way to turn and couldn’t even visualize
20) It’s been a year since my surgery. I can sometimes remember what I came In a room for now. But I still struggle daily though. someone can tell me something and I immediately forget what they told me or someone will speak to me and I don’t even hear them. I have noticed I’m able to do sudoku puzzles again so I think it’s getting better.
21) This is so all me too! I get so embarrassed at not being able to find words and everyone just thinks I’m getting ‘older’. So very frustrating!!
22) Wow, what a relief to hear all of your struggles with your memory and speech. I have seen deterioration in my ability to not only remember things, but have a hard time getting the word I want and then when I do, it doesn’t come out right. It’s so frustrating! I have gone undiagnosed for at least 10 years and I’m only 42. I’m excited to be heading to Tampa day after tomorrow to have my surgery. I’m scared to hear that it may take quite a while for this symptom to improve, but I’m hopeful that by this time next week, I will be free from the debilitating fatigue, joint pain, and stiffness that is taking the joy out of my life.
23) I’m 2 years post-op. this May 28th. 2 upper adenomas removed by Drs. Politz & Lopez @ NPC in Tampa. (Self-referred ). Prior to my surgery, my husband and I would try to have a conversation. I couldn’t focus on the discussion. The next day, I would ask him a question and he would say, “We talked about that last night”. I would argue with him…..”No, we didn’t”! If someone called on the phone, I had to write down everything so I could tell my husband or I would not remember! I was a teacher for 30 years and ideas, language, names, subject matter, etc., came to me very quickly then. I was never at a loss for words. Prior to surgery, I began staying home, sleeping all day, stopping cooking , reading, watching TV, and driving….too exhausted…and, I had lost all interest. All body/joint pain was gone immediately after my surgery. Foggy brain took about 3-6 months to improve. My husband and I noticed the improvement at the same time! Foggy brain is completely gone now, and I recently finished an 860 page novel in 3 days!!!
24) I still have hyperparathyroidism. I am praying that Dr. Norman can help me. I had to retire from teaching after 34 years as I could not carry on a professional conversation with my coworkers. Add the lethargy, fatigue, and deep bone aching and I’m still a basket case. The brain fog is difficult for me to make others understand. Words are swimming around in my head and I can not draw them into the sentence so that what I’m saying makes sense to others. I go to Tampa June 24th. Can’t wait to have my life back. I, too, have had hyperparathyroidism for at least 16-18 years. I have had 3 different endocrinologists. My doctors just kept saying “well your calcium is not that high.” Then, “come back in 6 months. Calcium was usually somewhere between 10 and 11. Dr. Norman called me the same evening he got my records. My story is very much the same as so many others I have read about. I am so thankful that there are others out there who understand the frustration, physical symptoms, and brain fog I feel.
25) I feel like the top of my brain is ‘clogged.’ The scariest thing is that I can’t express myself via the written word with clarity, which I’ve always prided myself on. I help people with resumes, writing grants as well as writing my own essays, book reviews, etc. I look at the words and can’t arrange them how I want to. I’m a great editor and it’s just frustrating now to do editing as I’ve always loved doing it. (I had to reread the above several times to make sure it made sense.) And it was exhausting to do so. In other words, my brain is tired after these tasks. Forgetfulness has sped up in the last year–too fast to be normal.
26) Blurred vision, attention span of a goldfish, not understanding or hearing what’s been said to me, it’s like burbling of nonsense words, forgetting stuff, talking complete rubbish, not being able to concentrate on simple tasks. I swear I feel pressure on my skull when I’m at my worst too. Happening more and more often too.
27) Had avery difficult time finding words that used to flow so easily. Folks around me had about one or two minutes of my concentration before I could no longer pay attention. The worst was the constant word search. Sounded like a stumbling Stan
28) Blurry vision forgetfulness writing or posting on Fb is difficult. Finding the right words to express myself. Thank goodness for spell check.I am heading to Tampa for surgery this Friday and I have to write everything down so I don’t forget. Also decline in cognitive ability.It is comforting to read the positive experiences and that it will get better.
29) I look at a “computer”. I know it’s a computer……but the word is lost. So I describe it as a box, that has Internet (If I can remember that word ) and I use a keyboard. There is nothing in my brain at all. It’s completely empty of things that I know how to do, to say, names of people, etc.. And I can’t retain anything new.
30) Putting stuff away in the wrong place, especially in my kitchen drawers is my biggest problem, also going into a room and completely forgetting what I went to get. Takes several minutes for it to come to me. Had my surgery April 27, 2016 , changes haven’t kicked in yet since I had high serum calcium for at least 10 years that I can find in my medical records. So looking forward to the improvement!!
31) I still have brain fog on some days…lol…but I rock it on most other days when I have a great day (my background is that I had a successful surgery about 4+ yrs. ago). The brain fog sometimes now might be due to thyroid issues instead of parathyroid issues. A recent example is that I accidentally stuck a can of whip cream in the freezer. I was being a great party hostess that day but got distracted and ended up putting the whip cream in the freezer along with the ice cream that someone brought to the house…lol…you can’t be too hard on yourself though…we all have our good and some bad days 😉
32) All of the above symptoms, but also vision impairment. If I could navigate further than one hour from home, I would fall asleep while driving, sooo dangerous. Then, finding my way home again was always challenging.
33) Just adding a little more to this informative thread. Disassociation of emotions was a very disturbing symptom. I am/was a very empathetic and caring person, perhaps a little too much at times. During the course of this disease I lost the ability to feel emotion, any emotion, which was incredibly difficult to deal with, but also unreal as I couldn’t formulate an understanding of this. Many of these symptoms are the same as a person with a brain injury, a bit scary to think of that, however if using that framework provides a great deal of insight into the course of this disease.
34) Some days I just was not thinking clearly and I knew it. Sometimes it bordered on being a bit off like being in motion when I was not. Before my surgery it was often difficult to process more than one thought at a time and it was almost impossible to get any task started and then if I did, to get it finished. It seemed like I wandered aimlessly through the house on a daily basis with nothing accomplished as a result. Picking up and putting things down. I now am able to order my day and accomplish daily tasks in an efficient manner and feel good about what I have gotten done. That scalpel in the hands of expert surgeons made all the difference and I have Parathyroid Disease Awareness Group: Norman Parathyroid Center to thank for getting my life back.
35) It’s been two weeks today since the surgery to remove my hyper parathyroid. My worst symptoms were fatigue and memory loss. I thought it was part of getting older and I was worried that I was going to have to quit my job. Too often, I just could not think of the word I wanted to say. I am so thankful that my family Dr referred me to a knowledgable endocrinologist who diagnosed me and the wonderful surgeon who removed the hyper parathyroid. I could not afford to go to Dr Norman but I did my research and ask all the questions that were suggested on parathyroid.com I feel great now and so happy to be my old self again!
36) this post is amazing. i have already posted but just read everyones posts. its such a terribly scarely thing to go through and no one understands. its WONDERFUL to read your posts and to know. You all understand. i remember one time my son needed to look a car place to have something done to his car and i opened up my laptop and i looked at my husband and my son and i said how do you spell wibbly (that was the name of the place) and they both looked at me and told me the date. I looked at them and said “what did i ask you” and they said you asked us the date and i started to cry and said i was asking you how to spell wibbly. But that is not what came out of my mouth. I had this for over 20 years. they know this cause i was passing kidney stones in the early 90s and know one knew why. no one ever knew why. i couldn’t go out because i couldn’t find the write words to come out of my mouth sometimes or remember how to get home and i would have anxiety attacks. ANYWAY you all understand you all have just told my story in your post right here. and i think you are all wonderful and hope all of you get better soon. this group is so great ❤
37) its so wonderful to have people understand what we are going through. ABSOLUTELY. even with the blurry vision it comes and goes. i had an eye doctor tell me right to my face ” that is impossible. either your eye site goes or it doesn’t” well with this disease you can have blurry vision one day and it can be clearer the next. Thats the way this disease is and no one understands but us. this is so REAL
38) Hearing a question but having no comprehension how to answer it… not being able to talk logically or focus my mind. Not being able to concentrate or follow any conversation or tv programme, or even read an article in a paper as I forgot what it was about before the end of the first sentence. Words coming out backwards or jumbled up. Physical pain in my head trying to remember words… thankfully it all went back to normal within weeks of surgery. My mind is clear and memory pretty good 😉
39) My brain fog was getting worse every day and the exhaustion left me feeling like I’d been hit with a Mac Truck. I really was losing the words I wanted to say or complete thoughts, which is really hard for me since I’m a Speech-Language Pathologist! I don’t think I’ll even know how bad it was until I start feeling better. I had surgery today!!! So hopefully this goes away soon.
40) My surgery was on 1/13/16. My worst symptoms were exhaustion and pain. However, brain fog was also a big thing for me. My ability to focus, organize were not there. I felt incapable of doing my work because I couldn’t keep up with the demand. My job deals with lots of paperwork, so if I fell behind I ended up with even more work. I was on a constant cycle of being overwhelmed. Prior to my diagnosis I was feeling so incompetent. After surgery things have improved greatly although some days I feel as though I’m back to my preoperative state. The struggle is so real with hyperparathyroidism. I know my biggest issue was/is how little understanding people have of this debilitating disorder.
Purpose of Our Website Because of brain fog, when we are in the throes of the illness and need to be able to process information about our condition, our brains fail us! Knowing this, we designed this website to outline simply the issues pHPT patients may be having, and to provide useful information from what we learned from our own experiences and those of others. We hope the information is helpful to you in navigating your own journey.