Hypothyroidism and me
A little over a week ago, I got an official diagnosis of hypothyroidism from my GP. Fair warning, this post is going to be a little bit of a rambly discussion of my thoughts and feelings surrounding my diagnosis and other circumstances surrounding it.
I'm a US American, but I moved to Germany to do my master's degree in 2018 and have lived here ever since. I've struggled with depression and social anxiety since before I moved to Germany, but my symptoms got notably worse in 2020 (perhaps unsurprisingly). In late summer of 2020 my psychotherapist finally suggested I go on an SSRI, but she wanted me to get a blood test to rule out any physical causes. I went to my then-doctor and got such a blood test. Everything was within the normal range except for my TSH.
For those unfamiliar, TSH is the hormone your pituitary gland sends to tell your thyroid to get a move on. It doesn't directly measure your thyroid function, but it's a pretty good indicator something's up, so doctors use it to screen for thyroid issues. High TSH is a sign of hypothyroidism, and low TSH is a sign of hyperthyroidism. Your average person with a healthy thyroid will probably have TSH between 1.0 and 2.0, but some variation exists. The normal range that doctors use here has 4.2 as its upper limit. In 2020, my TSH value was 4.8. My doctor then said that people with hypothyroidism have higher numbers than that, so I was fine. She wrote my a prescription for a low dose of an SSRI, which did help me to an extent.
I've been fat for a long time, to different degrees. After I first moved to Germany in Fall of 2018, I quickly lost a lot of weight. There were likely a lot of factors -- I wasn't living at home where snacks were constantly stocked, I was buying food on a student's budget, I was eating out and ordering takeout less because of my social anxiety and shitty German skills, and I was walking a lot more. When I came back to the US for family vacation in 2019, I constantly got compliments about having lost weight, which felt weird. I was still overweight according to the BMI, but more of a classic midsize chubby at that time. But it wasn't to last, and I did start gaining the weight back. For a while it, I attributed this to my getting more takeout and walking less. But a year or two ago it felt like it stopped being directly attached to my activity or food consumption. I went on medication that suppressed my appetite as a side-effect, but I continued to gain weight. Since I was already fat and had been gaining weight for a while, I didn't mention anything to my doctors because I was already getting lectures about how I needed to lose weight and exercise more. I don't know for sure what I weigh right now because I've avoided weighing myself for months, because I'm scared I weigh over 100kg and I can't handle seeing that triple digit on a scale.
I've tried and failed to become more active and start an exercise routine several times. I joined a sports course at university with some of my friends, but I quit after a couple sessions because I was hyperventilating before warm-up was over. I've tried to do some basic strength training, but I'd be sore for days after even incredibly beginner-level stuff. More recently, my wife and I tried to take regular walks through the nearby park during last spring and summer. But I'd tire out after an embarrassingly short distance, not even enough to get to where we see the ducks (the highlight of the park for me). As the weather got worse in winter I basically stopped leaving the apartment. It's a struggle to put my shoes on without an extra long shoehorn so I don't have to bend over, and anything that requires me to tie my shoelaces is basically off the table.
I've been struggling with work for the past several months. I can't seem to focus on it, even if I take my ADHD medication. I look at the computer screen and I just can't mentally handle the work. Every day of work is exhausting, even though I work a pretty cushy job as a data scientist and I work from home. I do way less than 40 hours of actual work a week but I'm still too physically and mentally exhausted all the time to do anything but the most trivial household chores. I haven't cooked dinner for myself in months (thank God for my wife).
I switched to a new GP at the beginning of 2024 bc I was having trouble getting timely appointments at my last one. We agree to do one big blood test covering everything, since I have a myriad of small complaints and it's been years since I've had one. That test comes back mostly normal, except my cholesterol is a little high and my TSH is a smidge above 5. My new GP then says we should do a follow-up blood test to look at other thyroid measurements (this would be directly measuring the hormones my thyroid produces) to see if I have hypothyroidism. I mention offhandedly the interaction I had with my old GP in 2020 and she says that's not how you're supposed to do that; high TSH means further testing even if it's not that high. A few weeks and another blood test later and I've now got a new diagnosis and a prescription for artificial thyroid hormone.
It turns out that pretty much everything I've been struggling with for years now? May be because of my underactive thyroid. Your thyroid is apparently pretty damn important and it not working right (in either direction) can result in a truly dizzying amount of things going wrong. Depression, brain fog, fatigue, and weight gain are all pretty classic symptoms, but apparently it can also cause problems with your lungs or even contribute to carpal tunnel syndrome. Everyone with a properly-functioning thyroid, take a moment to thank that lil butterfly-shaped guy in your neck.
I'm so glad to have something that's basically a "feel better" pill now. But I'm left with a sense of deep frustration that I've had so many problems that even I dismissed to myself because I assumed they were just cause I was a stupid out-of-shape Fatty. It turns out it's actually not normal for someone in their mid-20s at my age to struggle to put on their own shoes without assistance, even when they're obese. Being unable to take a short walk without needing to sit down because I'm exhausted and out of breath isn't just because I'm fat and out of shape. I've had no shortage of symptoms heavily impacting my life, but most of them I hadn't even bothered to mention to my doctor because I assumed they were just Me Being Fat and that all I'd get was (yet another) lecture.
This is, of course, coupled with a lot of anger at my old doctor for not even running any follow-up tests. I've only been on levothyroxine for about a week and I already feel like I have a little more energy. I could have been spared years of suffering if that doctor had only done what she was supposed to. Fuck that.
But at the same time, I feel such relief. This all wasn't just me being a bad and lazy person. There was actually something wrong. And, even better, hypothyroidism is pretty easy to treat. I just wish I hadn't gone through over three years of unnecessary suffering when I could have gotten this treatment then.
Congratulations! This is a huge breakthrough. My wife has hypothyroidism. We're still in the USA. It's hard to find doctors whom even take it seriously as a potential problem, especially about 10 years ago when she was diagnosed.
Levothyroxine will do you wonders. Missing doses or otherwise taking it improperly will make you feel like crap once you're on it. Make sure to keep up with the blood tests to insure you're getting proper dosage, especially as your weight changes. Eventually you'll probably be able to guess ahead of time whether you'll need to increase or decrease your dosage based on how you feel though. It's really quite astonishing.
Also, watch your coffee and soy intake. Those definitely had a significant interaction for my wife. Here's a study if you'd like to learn more.
It also turns out a lot of our hygene products can have adverse affects on our thyroids. Would you like to know more?
I wanted to emphasize this point, as I had this very problem recently. My dosage levels had been consistent for ages. Then I lost a bunch of weight and didn't even think about the consequences with my thyroid medication. Suddenly, I was still losing weight even during periods where I thought I was indulging a bit too much calorie-wise, I was sleeping less yet feeling rested, I felt like I could do anything. I didn't realize it was the meds until my next checkup showed my thyroid levels were way too high.
If not for the fact that it presumably has negative long-term health effects, I wouldn't have minded being like that all the time. It honestly felt a bit like having super powers.
I had heard that coffee specifically can cause problems absorbing the levo if you drink it too close to when you took it. Luckily even though I'm a big coffee fan, now that I'm on ADHD meds I have one a day tops and it doesn't need to be right in the morning.
I read something recently that said, "If you were lazy, you'd be having fun." Basically to say avoiding whatever it is you're 'supposed' to be doing isn't 'laziness' unless you're begging off to do something enjoyable. If you're stressed about being unable to make yourself do whatever it is you're 'supposed' to be doing, you're probably unwell in some capacity.
I'm glad you got your diagnosis. I have many fat people in my life, and invariably, it seems like doctors use weight as an excuse to not delve into further investigations. Back pain? Lose weight. Joint aches? Lose weight. Trouble sleeping? Lose weird. Heart condition? Lose weight. Fatigue? Lose weight. It would be really incredible if it wasn't so deadly.
Weight is a very tricky subject when it comes to medicine. It's never as simple as running every single panel or test to get to the root cause of the issue, because the overwhelming majority of obesity cases exist due to caloric excess (rather than a glandular issue), and even when it is that simple, when a patient is obese and they want to overcome whatever additional aliment they're facing, in the overwhelming majority of cases they HAVE to lose weight to manage it
To add some nuance to your last statement, lets dive into why a patient might need to lose weight to manage different issues:
Back pain: excess weight stresses the body, and puts pressure on joints in ways we did not evolve to tolerate well. It can also affect how your spine is positioned when standing and especially sitting
Joint aches: Excess weight especially affects the joints. Though primarily the stress will hit knees/hips, it can also impact the arms, and even the neck
Trouble sleeping: obstructive sleep apnea results from the pressure that fat puts on tissues around the upper respiratory passageways. It can also again affect how you lay flat, and therefore can affect your sleep
Heart condition: I think this one is obvious, but would gladly elaborate if needed
Fatigue: Pretty much all of the above issues will contribute to fatigue from lack of proper rest
Now will all this being said, there's no excuse to mis the underlying disorder that may also be causing these issues, but the point I'm trying to make is that obesity strongly correlates to exacerbating existing medical issues, and even in some cases it can hide or mask underlying disorders
Obesity is not an excuse to stop delving deeper, but rather it is more commonly than not the main component contributing to said disorder, so yes, obese patients do need to lose weight
Weight loss should very much be seen as a 'yes and' rather than a straight up answer for many things.
"We can do X to help now but losing weight will also mean you won't need X going forward."
This was exactly my point. I know multiple people who have had conversations with doctors in which, while refusing to run any test, simply say, as if this is news, as if my fat acquaintance had never heard such a concept before, that they need to lose weight. Golly!
Not to put too fine a point on it, but my list were all real examples of people I personally know.
Back pain? Lose weight. Or maybe eventually get a X-ray that shows undiagnosed scoliosis which can be managed with physical therapy.
Joint aches? Lose weight. Or maybe it’s rheumatoid arthritis which can be medicated enough so they can exercise.
Trouble sleeping? Lose weight. Or it could be sleep apnea, that requires a C-PAP to keep them from dying in their sleep.
Heart condition? Lose weight. Or maybe it’s an entirely treatable heart defect, again manageable with medicine.
Fatigue? Lose weight. Or, y'know, it’s cancer.
I am not fat. But I have friends and family members who are, who have been singularly abused by medical professionals refusing to do their bloody jobs and deciding fat people are too morally bankrupt to deserve proper healthcare.
(And all of these people did end up losing weight once their medical issues had resolved and they could.)
That's not what I meant to imply, so much so as statistically speaking, weight can be a causative factor that leads to many different issues, ergo it is not always indicated to keep looking for an additional diagnosis when the chief complaint can be explained by obesity
If a provider was to order every test under the sun for each and every one of their overweight patients, that would be a gross waste of resources
I'm curious about this line of reasoning. I've been on the patient side of doctors being unwilling to just approve a test because of "reasons", and I'm having trouble seeing how they are justified in being the roadblock to a potential diagnosis / care. Wouldn't the bigger waste of resources be to ignore the issue until it requires more invasive intervention?
See my other comment. Thyroid panels are not one of the more expensive tests, and should be included when it comes to an overweight patient. My initial comment was referring more-so to the fact that weight does play a huge part in pathogenesis of many disease states. You can use medications to manage the disorder, but without managing weight, these can frequently be more of a band-aid
For instance right now I'm managing a patient with a diabetic foot infection that has progressed to an extensive gas gangrene infection, but homeboy doesn't want to manage his diabetes or amputate, and rather is requesting antibiotics to treat the existent infection. I suspect he will eventually leave AMA, as just antibiotics will never be enough to manage his foot (will likely need an amputation), but we are still continuing them for a few days despite it having minimal chance of being a lasting cure. Soon I suspect we will have to say that his therapy failed and he cant be on lifelong antibiotics to suppress further infection, due to it not only being a waste of resources, but also increasing his risk of antibiotic resistance unnecessarily as well as the risk of a secondary infection
I wonder if you are managing my housemate. He is in the hospital right now because he has an infection in his foot and his ear. He has diabetes and kidney failure but he eats nothing but candy, microwave dinners, and fast food, and literally the only exercise he gets is when he occasionally goes out shopping. He used to be obese but I don’t know if that is the case anymore because he has literally wasted away; his limbs simply don’t seem to have much muscle on them at all.
If this was just some guy, I could let him be and keep him out of my mind for the most part. But he means something to my husband and he causes him quite a lot of stress. There are so many ways that he basically refuses to take care of himself. AFAIK he is fairly distant from his family so they don’t intervene on his behalf.
My husband does not take good care of himself either and it causes me stress without end. I literally have to fight with him to get him to see the doctor even though he has excellent insurance and it costs him practically nothing. This last year I got him to have a physical for the first time in at least a decade.
Why does it take so much for us to realize that our lives have value?
Diabetic foot infections are no joke, and they're a common complication of unmanaged diabetes. I could write a novel on the complications associated with it should the patient fail to appropriately manage the disease state, but I'll hold off unless you had any specific questions
We see this oftentimes in obese, more frequently male patients. I think for many guys there's a reluctance to admit something is wrong with you or your body, which leads to the decision that no, they don't need to go to the doctor or take their medications
Are you a doctor? In the US? If so, I might have some further questions if you don't mind indulging me. I really am interested to hear other perspectives, because I have encountered a resistance to ordering tests while moving through the US healthcare system, and have always just assumed it must be some sort of pressure from insurance or possibly administration to "not be wasteful". But it's hard to wrap my head around it honestly, given that we have situations like OPs where one person slips through the cracks. I would think it would be far more productive to take the "yes and" approach mentioned above to cover all bases. I imagine it can be frustrating to encounter patients that are stubborn, but your example seems more focused on a patient that has a diagnosis and isn't following recommendations. That seems a different case from a patient that is requesting a test that may help to diagnose.
But again, I'm coming from the patient side, so maybe I'm missing some nuance?
Update: I'm leaving this comment as is, but I think you answered my questions pretty thoroughly in the other thread. Thanks!
I am a clinical pharmacist in Texas that completed four years of school plus an additional year of residency, so I may not be the type of doctor you were thinking of (despite by degree being a PharmD, Doctor of Pharmacy), but I do manage several floors where I oversee antibiotics, medication dosing/selection, and research more complicated cases to determine which tests we need to order to diagnose the chief complaint. With that being said I'd be more than happy to answer any questions you have. No, I don't directly have prescribing authority, but I do directly work with others to help choose the most appropriate agent, and from the inpatient hospital setting I have directly experienced the many moving pieces at play
It sounds like your experiences are mostly related to the outpatient setting though, so do keep in mind my experiences are strictly within the hospital environment, where insurance will cover more testing and procedures with less oversight, so you may not want to 100% extrapolate my responses to your own experiences. When a patient is hospitalized, they're generally more sick and insurances will cover more as opposed to the outpatient setting (non-hospitalized) where patients tend to be "less sick" so insurance companies will scrutinize testing closer to assess for reimbursement
As that last sentence kind of hinted at, you are correct that insurance and regulatory pressure tend to be the reasoning why providers on the outpatient setting are hesitant to order tests deemed unnecessary. Though insurance companies are less strict with inpatient, it still happens and I know from others that it's more strict in the outpatient side. If a provider ordered the rainbow of tests on each patient before sending the bill to insurance, they could eventually be audited and asked why they were doing all of these tests in an average patient. Eventually they then run the risk of insurance companies refusing to work with them, which means they can no longer see patients covered by that agency
Now please don't for a second think I support insurance companies governing what we can and cannot do (I think it's ridiculous), rather I'm just trying to explain why these things occur. Any patient I see and manage, I do my best to get them feeling better so that they can discharge. Then when they discharge, I go one step further to be sure they understand not only what they have to take (medication wise) but also how the medication is helping the disease state. I have noticed that many MD/DO's and RN's simply tell patients how to take something, but without an understanding of why they're taking it for their disease state I think it's harder to understand the importance from the patient side
My example I mentioned btw was moreso directed at explaining how we would not just unduly waste resources when inappropriate. Back to OP's situation I'm shocked that a Dr. did not want to test for thyroid function, nonetheless TREAT it with an elevated TSH. For context, 30-40 year olds with no prior thyroid issues should not have a TSH above 4, and I could argue that even above 3 for that age bracket is generally unexpected
Once I got the diagnosis I did some googling and I found some literature discussing "borderline hypothyroidism", which is where your TSH is above 4 but below 10 and both your T3 and T4 are normal. In that specific scenario, there's apparently some disagreement on whether you should treat it if the person has no symptoms. The most charitable explanation I can think of is that my first doctor was passingly familiar with this but misremembered the fact that it's only borderline if T3 and T4 are normal, which you obviously can't know without testing those.
But yeah, that's the only explanation I can come up with for why someone would feel justified being so dismissive in my case. I was 23 years old when I got that first test result.
Sure, but why not at least do a couple of quick, inexpensive, low-risk, low-invasive tests for common conditions known to cause these symptoms? Blood tests are already a pretty routine aspect of preventative health checkups, and it's not that expensive to get the lab to screen for a couple of other things. Where I live, pathology labs charge insurance/medicare/the patient (if paying out-of-pocket) around $25 AUD ($15 USD) to measure TSH levels in a blood sample.
More than 1 out of 10 Americans develop a thyroid condition in their lifetime, and more than 1 in 20 Americans have anemia (which causes hypothyroidism-like symptoms) right now; I imagine these numbers are fairly similar in other wealthy western nations (they are for Australia). It seems reasonable to me to occasionally screen for these in patients who show symptoms, patients with a family history, and patients in high-risk demographics.
I've certainly never had a doctor act reluctant when I've asked for these blood tests. In my experience, they usually suggest tacking on quite a few unrelated tests for good measure, since they're taking the blood anyway. The results usually come back in just a day or two. I don't get the impression that pathology labs are stretched thin.
If someone's GP is saying no to these tests and just telling them to lose weight instead, something is wrong.
I should clarify that thyroid panels are part of standard lab order sets, so there's really no excuse to not test thyroid function. And for the OP especially with an elevated TSH, there's absolutely no excuse to NOT treat. A younger person should not have an elevated TSH (even 0.2 above normal limits), and hypothyroid patients can experience symptoms with even the smallest impact to overall glandular function
Rather what I was referring to are the more involved, higher dollar tests and scans (usually cancer or other more rare, less common tests). To provide more perspective, tests ordered more commonly at a hospital, for disorders that are more frequently seen will typically be done in-house, where the instruments used are able to test without costing the patient significant amounts. Tests that are less common tend to be more expensive, and will frequently be sent to other labs or hospitals that handle all of these less common tests for the country/region
In this case would you let the patient know you are hesitant to order the test due to a concern for their finances? If that were the reason, I know I'd appreciate it being a conversation as opposed to a flat out refusal without an explanation. I have a family with very expensive medical conditions, so there are times when I hit my out of pocket maximum which essentially means in-network care is free until the new year starts. If a doctor presented me an expensive test, I'd probably explain that I can handle the cost. Even if I couldn't handle the cost, I think I'd appreciate the candor.
It's hard to provide a direct answer to that, given that every patient and every case is so different there's not just one scenario this would occur, but I can say that testing is governed by clinical guidelines that essentially establish how to care for and manage the more common disease states. To extrapolate the mindset of most guidelines (or at least those that are more thorough), they assess for the likelihood of other confounding factors and recommend additional testing if a patient meets certain criteria. Let me know if that makes sense
Now for your specific scenario, I would personally have a conversation with the patient to discuss the likelihood of this (or any for that matter) specific test giving us additional information that may facilitate appropriate management of their situation. If the likelihood of the test contributing to a diagnosis is high, then I would definitely still suggest it up front, with the consideration of cost. If the likelihood was low, but they still wanted to proceed then I would counsel on that situation but at the end of the day, if I thought it to be clinically appropriate I would still suggest they proceed with testing, as long as they understand the caveats related to cost and probability of getting a useful answer from the test
Of course, this is just me, and since I've only really been practicing for about a year out of residency I feel like I'm less jaded than many others in the field, and have more desire to help my patients get better
Thanks for the context, I appreciate it. I can understand how generalizing in this case is pretty unhelpful as well. And for my part, I've encountered doctors that will have that conversation weighing all the options. I'm more trying to make some sense of the other encounters I've had where there is some secrecy clouding the denial of a test. The search continues on that I guess, but it does sound like there may not be a singular factor to explain it. It seems procedure, bureaucracy, and burn-out all play a role to some degree.
If you want to elaborate on some of those other scenarios, I'd be happy to offer my thoughts on a possible explanation
I will say though that the healthcare system is monumentally complex, and issues come up that you might not even realize were a possibility. It certainly happens to me weekly lol
It's so hard to set aside the spectre of "laziness" as a concept. I have ADHD too, and once I got diagnosed with that I learned a lot about how bad framing it as "lazy" was. But apparently none of that transferred over to my non-ADHD symptoms. The idea that if I'm tired I should be pushing myself is so pervasive that when you've got fatigue, it feels like a moral failing. And it's surprisingly hard to unlearn that.
Also didn't help that I never recognized what I had as fatigue. Because fatigue means something worse when you can't work or get out of bed, right? smh
What topic were you reading about when you read 'if you were lazy you'd be having fun? I'd like to learn more about this if possibl
I legitimately cannot remember where I picked it up, unfortunately. However, it seems the primary source is this blog who seems to have been told this by a speech pathologist.
Man, this kind of collision with a dysfunctional healthcare system is really painful. It's sometimes unavoidable too, because most of the screw ups that led to you not being diagnosed exist for a reason and all it takes is for one doctor to make a bad judgement call for you to fall through. I've been there too, needlessly suffered from heart arrhythmia that was not dangerous but strongly limited my life for almost a year longer than it needed to because my first cardiologist was aggressively apathetic and incompetent.
It probably won't make you feel any better, but you're not alone. With less common diagnoses it's just something that happens. With rare issues especially it can be infuriating, because what sometimes happens is that a person suffers for a decade or more only to find out they have a rare mutation that causes them to not be able to properly metabolize whatever, and all it takes to instantly bring them into near remission is to suplement said whatever in an appropriate form, or a precursor to a specific enzyme or something else related, which is sometimes readily available and affordable. But the only way to find it is to just randomly test for it.
It's depressing to think that there are undoubtedly countless people suffering who are being told that it's just in their head or that they just need to work harder and lose weight or whatever else.
To add to this, when something is your normal you may realize it's a problem but not realize that medical treatment can help. I have a diagnosis now with symptoms that I didn't bring to medical attention for a significant period of time because I thought most people just lived with the same issues I did.
What gets me is that so much of it was from me. The one doctor didn't do the right test, but I'm the one who's been dismissing my symptoms as being just because I'm fat. I never told anyone about how hard it was to put on my shoes (except my wife, who I'd ask to help tie them sometimes) until after I got this diagnosis, and I just assumed it was because I'm fat. Would one of my previous doctors have thought it was something worth being worried about? I won't ever know. The fatphobia was coming from inside the house. Ultimately I'm really lucky that my current doctor paid attention to this, because I clearly wasn't doing a good job advocating for myself.
About halfway through reading your original post, I had already panned out a comment that goes a little into detail about this and how I wanted you to go see a doctor (I had frankly – thankfully for my health, shamefully for my knowledge – never heard of thyroid issues before).
Obviously I know nothing about your body, but I am in, I would estimate, similar “superficial” shape to you, most of which in my case is due to Covid and leaving a more active lifestyle behind at the same time.
And despite all of those ≈100kgs, I can tie my shoes, walk in the park; hell I can sprint (albeit poorly), run, bicycle, ice skate, and so much more.
I guess what I wanted to say is that it’s definitely not normal to have so many issues and in such severity, even at weights like ours. I’m glad you got to the bottom of it and I’m certain this will only be the beginning of a looong time of great health improvements.
P.S. greetings from Germany, I hope you feel a little more welcomed/at home here now!
yeah, a previous doctor (one who didn't interact with the thyroid test at all) recommended I start exercising more and suggested "run for even just 20 minutes a day" and I couldn't figure out how to even communicate that I couldn't even come close to doing that. Time and time again I defaulted to the assumption that it was all my fault for not doing more even when I physically struggled.
Now that the sun occasionally comes out, I'm feeling very at home here! My feelings about Germany vary significantly with the weather lol
It's interesting to see this story since I just had a endocrinologist appointment today for my own hypothyroid issues.
I'm glad you were able to get proper help since thyroid problems aren't something people are very aware of. I've been on both sides of the issue with hyperthyroidism and it was the opposite of your situation. No one saw any issue with me being extremely underweight in my teens and it took a random person suggesting I get tested to recognize the problem. Unfortunately, event the most aggressive medication didn't work and we resorted to burning out most of the gland with radioactive iodine and that went very wrong. And now it's an under active and being attacked by my immune system.
The issues you've had with the fatigue, depression and excessive weight gain is relatable but everyone has unique overall experiences. Some people can make do with a set dosage for decades and there's others that have to adjust every few months. Your current doctor sounds pretty attentive so hopefully you get into a good system. Just hope your health care covers the tests, check ups and meds.
But also don't neglect any of the non-thyroid issues. Borderline cnholesterol through your 20s-30s can lead to worsening issues in your 50s. And even if the meds are helping your energy and weight, it doesn't replace good eating and exercise (and for the love of God, do not take extra meds just to loose some weight).
And if you need to, try to have someone to speak to about this. Doesn't even need to be a therapist, just a little support structure that knows the situation. Because if things does go bad, it feels like being aware of the situation makes it worse. Knowing that there's one part ruining you life. That you physically can't be the person you want to be. That you need to rely on pills to be normal. That your doctors are idiots that can't fix you. It's been 12 years and I still catch myself obsessing over how they botched the radiation treatment.
Wow, I did not know they used radioactive iodine outside treating thyroid cancer. Is there something that makes cutting out a piece of thyroid dangerous enough to warrant an increased risk of cancer?
So the most current studies consider surgical removal as a procedure with better outcomes. But my old doctor still is a highly regarded endocrinologist and back in 2005, he was a strong advocate for radioiodine treatment for over active thyroids. The rationale was that it avoids the health and cosmetic risks and that there's enough imaging technology to properly calculate the dosage.
It's not completely without merit. Plenty of people were treated effectively and the cancer risk is reasonably low. It just sucks that there was a better option but you work with the information you have.
Hyperthyroidism is really hard to treat and can really fuck you up. With hypothyroidism you can just take artificial thyroid hormone, but you can't take thyroid hormone away so easily. My understanding is that when radioactive iodine is used to treat hyper it's essentially "let's try to kill the thyroid a little bit but not too much". But iirc it can also be used as part of diagnosis too.
I'd heard treatment for hyper was pretty rough, but damn. I'm sorry that happened to you.
I'm very lucky to be here in Germany for all this. Not paying anything for the doctor's visits or blood tests and having a tiny co-pay for the medication makes it way easier. Who knows how much longer something like this would've lingered if I had to worry about the cost of seeing my doctor.
I cannot believe the timing of this post.
Less than 1 hour ago the nurse at my fertility clinic called me to tell me that the TSH bloodwork they ordered as a follow up to my initial bloodwork was once again high, coming in at 9.3. The first one was 4.7 which triggered them doing the second draw. They have already prescribed levothyroxine for me and I have been sitting here googling what this might mean and going through exactly what you describe.
So much relief and hope that one medication might be the answer for my mounting fatigue, the increased anxiety and depression, the mental fog I have suddenly started experiencing, the fact that weight loss has been such an ongoing issue despite strict calorie counting.
But also so much frustration that this is coming from bloodwork I was doing because I happen to be seeing a reproductive endocrinologist who bothered to look closer at something. I have hypothyroidism in my family history but my TSH had never really been looked at closely by other doctors. Was this because this is a newer issue for me or because they just didn't check. How much of my issues are from something being wrong with my thyroid versus other things? It is a serious mind fuck right now. Kind of wild to see someone else type up such a similar story to what is playing out this moment for me.
At a fertility clinic hopefully they take it pretty seriously, since untreated hypothyroidism can really impact fertility and pregnancy. I saw someone on reddit mention they struggled to get prescribed levo until they said they were trying to get pregnant.
I'm glad this post hit at such a perfect time, though! Hopefully both of us will start feeling a lot better in the coming weeks and months.
Definitely! I really appreciate you posting your feelings on your own diagnosis and am excited hearing how you are already noticing some changes. My fingers are crossed that we both end up on the other side with stories about how big of a difference we feel with treatment.
I’m sorry to hear the struggles you went through. That sounds awful
To clarify, these were all German doctors post 2018 right?
Did you ever have blood draws from previous doctors in the states?
Yeah, all these were doctors here in Germany.
As for blood tests in the US, not for thyroid hormones, no. It was never really recommended to me then. I had shitty health insurance when I lived in the US, so who knows how that would've gone anyway.
My experiences are specific to the US healthcare system, but I'm surprised that the German doctors were so unwilling to manage your thyroid
I mentioned in a previous comment just now that hypothyroid symptoms can exist when your thyroid is even the slightest bit low, so even with a TSH 0.2 above normal, it's very expected that a younger patient will exhibit worse symptoms than an elderly patient with such a slight elevation
To be fair to Germany, it was only the one doctor who screwed up my thyroid stuff by not testing further (and she had a background working on US army bases iirc). My current doctor jumped on it very quickly.
Both hypothyroidism and hyperthyroidism (along with several other fun and exciting autoimmune disorders) run in my family. Contrary to what you might expect, they do not cancel each other out; instead, you just swing wildly between the two sets of symptoms. Fortunately, hyperthyroidism is the more rare of the two in my family (it's worse than hypothyroidism), but hypothyroidism eventually strikes something like half of my family members — if it's not already present from birth, like it was with my late brother.
My mother developed Hashimoto's when she was pregnant with me. She has to get regular biopsies of her thyroid because, as her endocrinologist puts it, "You have the strangest thyroid cells I have ever seen in my career." So far no cancer, but it often feels like it's just a matter of time.
My thyroid seems to be OK so far, but the chances of it staying that way are not great. I make a point to mention this aspect of my family history with doctors, because I hope we can catch it early if/when my body attacks it.
I am surprised that many doctors are not more wary of thyroid disorders, since they are fairly common and have devastating consequences. But I think autoimmune disorders in general tend to be commonly neglected and misunderstood, and sometimes very hard to diagnose (my aunt had to go through a barrage of tests, and even had to get her home and workplace checked for black mold, before they diagnosed her with Lupus).
Yeah after I got tested I asked my mom if we had family history and apparently my dad just got diagnosed too. Funny how I find out lol. My mom's just happy her side of the family isn't the source for once.