I left the doctor’s office in tears today
By - bcofz
Next time a doctor refuses you tests tell them you want it specifically noted In your chart they they CHOSE to not run any additional tests. 9/10 times they will change their mind
I’ve done this and always end up getting tested for what I ask. You and the doctor are a team, not him doling out tests.
This is such a great tip thank you!!
Ask for ESR, CRP, and ANA tests!! Those aren’t in a standard panel, they’re for autoimmune disease
They did an ANA for me and it came back negative for everything. They never talked to me about it but I’m looking at my results now and they did CRP-Qn and it looks like mine was high and out of the normal range 1.67 mg/dL but I’m not sure what that means…and from what I can tell I haven’t had ESR done so I’ll definitely look into that!
Just a heads up, you might want to have your ANA tested with a different lab. We found out our local lab is wrong, by having that tested in 3 different labs and they were all positive.
Good to know! Thank you!
Really sorry this happened to you. Unfortunately its really common. My wife has ME and has been bedridden for the last 10 months. I am her full time carer. In this time we have seen a lot of medical people and some of them clearly think its a mental issue / outright dont believe ME exists.
I know it sucks but all there is to do is keep plugging away. These days when we encounter a new professional we go into it philosophically : expect nothing and be pleasantly surprised if they arent completely useless. This has saved us from some of the heartbreak. Thats all Ive got really, keep trying, keep your expectations low, and try to take it on the chin if they are idiots. Some really are. Its a roll of the dice I think.
Thank you for the encouragement! My boyfriend takes care of pretty much everything that I can’t do for the past 3 or so years that I’ve been sick. Y’all are both very very kind and caring people
You mentioned you are taking Prozac, are you under the care of a psychiatrist for that? I have depression and a lot of other issues like you that they try to pin on depression. I find that telling doctors that I see a psychiatrist and she says it is not depression helps prevent them from brushing me off with that. They won't believe me when I say its not depression, I've had depression, but they will believe that my doctor says it isn't that.
I am seeing a psych and bless her, she has helped me more than this GP has! We’ve adjusted my meds to try to get me as not-tired as possible lol. The dr asked me if I was seeing a psych and I told him yes but I guess he didn’t care 🤷🏻♀️
Yeah, it isn't a magic pill but it helps a little I guess. After the continued gaslighting on the topic, I even went back to my psych and asked her point blank, "could depression be causing my fatigue if I don't feel sad at all?" and she said "No, fatigue by itself is unlikely to be depression."
Exactly! I’m like I feel fine. My meds are controlling my depression. I /want/ to be active but I physically can’t be!! I remember what depression fatigue felt like. You couldn’t get me out of bed for anything! No motivation whatsoever. I didn’t want to eat or shower or anything
First, your doctor can't seem to make up his mind.
--He says it's psychosomatic.
--Then he said it sounds like anemia or thyroid issues (and refuses to do full thyroid panel despite your thyroid medical history).
--Then he said it must be the depression and possibly lack of motivation.
--Then he said it must be the Prozac.
--He said there are no more tests to do.
If you can, switch doctors. Whether you must stay with him or you can switch, I'm going to suggest some things for you to do before your next appointment.
First, let's go with the theory that your issue is due, at least in part, to the Prozac. Trust me, I'm not dismissing you, but want to try to help you develop a different way of presenting this to your doctor so he might look beyond the depression.
A couple of important points. Prozac's half-life means 50% is gone from your body 4-6 days after you stop taking it. It can take up to 25 days for all of it to leave your body. So even though you stopped taking it (and your other meds) in the "past week or two," it can still be affecting you.
--So, for now,, you can't say for sure yet that the Prozac is not at least contributing to your issues.
--You are taking other unnamed medications, for an unknown (to those of us responding) amount of time that could be interacting with the Prozac. Or those other medications (or other medical conditions) could be the factors in your issues.
Most importantly, in your 4th paragraph, you said "This is a different kind of sleepiness."
Being tired or feeling fatigued is not the same as being sleepy, needing to sleep for abnormal amounts of time per day (or struggling with sleepiness during driving, cooking, etc., if you are having those issues). I don't think your doctor is hearing these as two possibly separate issues you are having. While they often come together, a fatigued person can lie in bed for hours without sleeping, or just fall asleep because they are in bed. But that can affect their ability to sleep that night. (Sleepiness that you can't fight off is different. It sounds to me like that is what you are experiencing.)
How you say/present these things to a doctor can make a huge difference especially when you have the diagnosis of depression, because sadly that's all many of them are capable of seeing/thinking when you are in front of them. (If in addition to depression, if you are a woman, especially in your 40s or older, or if you are overweight, your concerns are even more likely to be dismissed by many doctors.)
So, my recommendation are:
1. Ask for a medication review from your pharmacist to determine if your medications could be interacting with or counteracting each other. (If you get all of your prescriptions filled at the same place, that pharmacy should have software that automatically identifies those interactions.) Notify your doctor of any interactions.
2. For a couple of weeks, a daily basis, keep a record of your fatigue and your sleepiness--as separate issues. You could photocopy or print a daily calendar page (with minimum hourly increments but preferably 15 minute increments) and then mark them in some easily visible way for your doctor to be able to scan quickly. -- There are apps that can help you do this, but DON'T use them unless you can print something to show your doctor. The point is to have something physical that you can use to pull the doctor's complete focus to so he isn't looking at your digital record or checking your eyes or listening to your breathing, etc., at the same time.
For example, an easy way to capture this would be drawing lines down through the time increments. Maybe blue marker could be used to indicate when you were fatigued enough that you had to lie down, red marker could be used to indicate when you fell asleep outside of your normal sleep hours (lying down or not), green marker could be used to indicate when you slept during your normal sleep hours. If you start to see a pattern of falling asleep or needing to sleep when driving or doing something else where falling asleep could be dangerous to you or someone else, add new colors to track those times.
Three (reddit keeps changing the number to 1) . If you have or can get a fitness tracker with a decent sleep tracking device, wear it during the weeks you are manually tracking your fatigue, sleepiness, and sleep times. Compare the fitness tracker readings to your own manual tracking. You may find that you are waking up frequently during the night without realizing it or falling asleep at times without realizing it. The devices aren't perfect, but they could provide some helpful info.
Four Make a physical list of questions/points that you can also put in front of your doctor to pull his focus with some specific key words: danger, long-term effects, recommended tests. --These words all remind the doctor that there are risks (to you and to him, professionally), from not ruling out other potential issues. Some examples you might use:
a. Am I at risk of developing additional medical conditions or complications from not getting adequate sleep?
(I AM NOT a doctor but I would think ordering a sleep study and an ECG would be appropriate becausethere are risks. Sleep studies can help identify restless leg syndrome, narcolepsy, and other sleep disorders beyond sleep apnea. Those disorders can cause fatigue and sleepiness. Apnea can cause intermittent reduced oxygen intake ).
b. What are the long-term risks of not treating my documented thyroid disorder or the anemia you said I might have.
c. If you think the Prozac is the issue, let's discuss what other antidepressants could work for me.
d. If you aren't willing to investigate further, please make copies of the results from the labwork and other recommended tests you've ordered so I can take them to another doctor for a second opinion. I'm particularly interested in the tests related to the thyroid, anemia, and anything you've checked related to inflammation, such as CRP.
I know this was terribly long, but I've been lying in bed for a few hours (slept for 30ish minutes) for my own autoimmune fatigue, which feels very different from my depression fatigue, and also different from my combined autoimmune/depression fatigue, so I had some free time. You might not choose to take my suggestions, but please at least consider switching doctors.
Tell me about it. I’m definitely looking for a new dr! Also yeah I interchanged “sleepiness” and fatigue when I shouldn’t have—I should probably note that I have suffered from insomnia my whole life, so I’m constantly tired and the only way I can sleep at all is by taking Trazodone which I know /actually/ makes me sleepy, but my psych has actually reduced all of my meds that might have been making me sleepy (Vistaril was something the GP mentioned that I’m taking but I have cut back on that over the past three years and even when I was taking the full dosage, I wasn’t this physically exhausted. I’ve been tracking my symptoms and sleep the past six months because of my memory problems because I ran into the problem of like forgetting my symptoms when I actually got to the doctor. Pre COVID my bf was able to be there and remember what I’ve been going through & tell them, but with the restrictions I’ve had to take notes everyday haha
Thank you for the tips!!! I’ll definitely be implementing these day to day and when I finally get to a new dr
Similar situation as yours. Was diagnosed with fibromyalgia. I’m currently taking Cymbalta and it’s helped tremendously.
I’m really glad for you!!! They actually tested me for fibromyalgia after months of my prodding and that came back negative for me, so alas…still don’t have a good cause for these symptoms
Yes, look into POTS. I had 7 years of “it’s all in your head.” I understand and it’s devastating.
Will do!! Thank you!
I haven’t, but I’ll do a little research, thank you! The challenge with that is that I’ll still have to find a dr who listens to me for either the Hashimoto’s or these 😪😪
Oh cool! Thank you!!
if there's a lab u want that yr doctors wont order, u could use link2labs or something like that. they're cheap labs for uninsured peeps where u dont need a doctor order. i haven't used em myself bcuz i have insurance n good doctors. but, like, even tho u have to pay cash not insurance, it still could be worth just paying the $20 or $50 for the labs u know u need instead of spending months going to doctors, paying for the appts, trying to convince them to order em. just a thought.
oh another simple thing to look into is hypoferritinemia. low ferritin from iron deficiency. theres so many peeps in the anemia sub who were superduper exhausted and having other symptoms of anemia. but hemoglobin was normal on cbc and since they werent anemic, doctors never checked ferritin to see if they're iron deficient. when they finally got ferritin checked, it was superduper low. bcuz it turns out low ferritin even without anemia can cause loads of the same symptoms as anemia. if u wanna check ferritin, i think it's only like $10 to check it on link2labs. u can google symptoms of hypoferritinemia and find good papers n stuff abt it
Awesome thanks!! They actually have tested my ferritin and it’s /definitely/ on the lower end (about 41 ng/mL from my latest labs) so they’ve got me taking iron supplements
You could be iron deficient with no anemia. I was very exhausted, weak, had constant vertigo, and pale skin. My hemoglobin was normal so no apparent anemia. It wasnt until my MCH and MCHC were low and my hemoglobin was just barely low that my doctor ordered a ferritin test and I was dangerously low.
If possible, I'd suggest getting another doctor or like another user said, finding a way to get these tests done for cheaper. Even if you were to see another doctor, it'd be good to have some more reference on top of the past diagnosis of Hashimotos. I've had better luck with setting an internist than a family doctor since family doctors are usually just interested in standard physicals.
I'm sorry you're going through this. People and doctors seem to think that depression and chronic illness can't coexist, depression has to cause chronic illness, right? The person probably also must not know theyre depressed and it's up to these doctors and "well meaning" people to inform the patient that it's depression causing it. It's all BS. And vague, standard bloodwork coming back normal must mean it's all psychological. 🙄
Thank you so much! They’ve done a few ferritin tests and i was at 8 ng/mL in may of last year, but last week I was up to 41 ng/mL. I don’t think they’ve done. As far as I can tell my MCH and MCHC are like smack dab in the middle of normal range. And man, I don’t know what it is with these dr’s being obsessed with physicals! He said he wanted to see me again in six months “unless something dire comes up” and I was like my man I cannot function in normal day to day life. I am currently in the dire situation…
Oh good I'm glad you got it checked out and got it elevated. And I don't know! Unless they were to actually listen to the patient things can go under the radar with a standard physical too. And here he is making a dire situation more dire.
I’d go to a different practice and forget you ever saw them. You don’t diagnose a psychosomatic illness off of one round of bloodwork, and you don’t diagnose it without giving an appropriate referral pronto. I’m sorry they were so lazy.
My Mom’s Hashimotos came and went like you’re describing, and so does my sister’s.
If it turns out that you have a conversion disorder or something, that’s a real and treatable illness that deserves attention and care. I’m not saying you do; I’m just saying that if you did, your symptoms would be equally valid, and your problem would be equally real. I hope you get relief ASAP for whatever it is.
Thank you so much! Yeah I’m definitely dropping this dr and practice!!
I'm so sorry that you had such experience :( I know exactly what you mean when you say your brain needs activity and stuff to happen, but physically you can just sleep. It's a terrible state. Did you do ANA test?
Yes I had an ANA about six months ago, and it came back negative across the board 😪
Was it a regular doctor? They often don’t see hashimotos as an immune disease where the immune system needs treating.
Yes a GP! But I saw an endocrinologist, too, I think almost a year ago, and she did the same test (just TSH and fT4) and said the same thing that those levels are normal, so they weren’t going to dig any further
I think you might need a rheumatologist, they know more about the immune side of autoimmune diseases.
Thank you! I’ll check that out!
Try Dutchtest on Instagram. It’s hormone testing. Also, find functional medical dr.
Thanks! And yeah that’s definitely the new plan 😅
You said you were diagnosed Hashimotos. Go to that thread. Your symptoms line up with that. Find a functional medicine doctor, your labs are more than likely not in their ranges. Look up leaky gut and insulin resistance. You can have Hashimoto’s with normal thyroid, but they need to run all of the thyroid tests, T3, T4, Free T3, Free T4, TPO, Thyroglobulin AB. Some labs also can’t detect ANA’s. My daughter is in the same boat as you with all they symptoms and her TSH is normal. She is on a Whole 30/AIP diet with supplements to help absorb because of the leaky gut and gluten allergy. Don’t wait another 6 months, in fact you can go to a lab and pay out of pocket for some of these labs. Find someone who will make phone calls for you and insist that you be seen. Take that person with you to the doctor to be an advocate for you and Insist on these labs. We didn’t get answers though until we went to a functional medicine doctor who could do all these labs for $200. Also look up Isabella Wentz. She has several books and a website with a lot of great resources!!!
This is all great stuff!!! Thank you!!!
A lot of your symptoms are consistent with Hashimoto's but there might be more going on.
What is the closest metropolitan area to where you are, people may have doctor recommendations?
That’s a good idea! I’ll probably make a separate post so more ppl can see but I’m about one-two hours outside of Atlanta GA near Gainesville