Anyone else dealing with hypothyroidism?

[Dark1x]

So I was diagnosed with this earlier this year after being considered "borderline" for years. Started some treatment and felt better initially during first couple months but now I'm having the opposite effect feeling more tired than before. The problem is that I haven't been able to get it properly checked since the virus situation hit so I don't know what my levels are and dialing it in seems to take time. Just feeling frustrated by it. Anyone else dealing with this?

 

[terminaljeremy]

Sorry to hear about that. My mrs has Hashimoto's Syndrome and while it wasn't a huge deal for a long time when we were trying to get pregnant it became a huge deal and the meds went crazy, which has definitely affected her a lot since. Tiredness and emotional waves are BIG factors and it may be that you simply need to get your levels of thyroxine adjusted if it's a new disgnosis. But hopefully once that gets ironed out, it is pretty liveable and while not cureable (to my limited knowledge) a small regular dose of thyroxine and tests every 3-6 months should mean your life hopefully isn't too adversely affected. Best of luck John.

 

[Amspicora]

Sort of, Hyperthyroidism in my case. I got it when I was 23 (now I'm 29), in my family everyone have the Hashimoto's Syndrome (it's pretty widespread in Sardinia after all) so it was expected in my case. I take both Hypo and Hyperthyroidism drugs for it because no other medical treatment was efficent enough to keep it in check.

It fucking sucks and sometimes I think it make everything worse in my mind. So i can totally understand your frustration, but stay strong John.

 

[19thCenturyFox]

I got hit with the other end of the stick (Hyperthyroidism) and while the symptoms are usually mild to a degree where I don't really need to deal with it at all, it spikes up drastically seemingly at random and makes my life hell for a few days. I'll actually need to get it checked out again because I suspect it's the reason why I haven't been able to sleep for four days last week.

 

[LunaSerena]

I have Hypothyroidism, OP, diagnosed since I was in high school (so over fifteen years by now!). It's a family issue - my mom has it as well.

I'll go out on a limb and assume they gave you levothyroxine. The first few months can be be frustrating while they find the adecuated dosage for you. When you start a new dosage it can take from a couple of weeks to a month to get used to it according to my doctor.

Mom had her dosage switched a couple of months ago and it's was exactly as you described - first two weeks everything went well, then she felt tired and sluggish, but she reached an equilibrium after that and has had no issues so far.

Give it a couple of extra weeks and if the tiredness doesn't go away set up an appointment with you doctor to get blood tests done.

 

[Merrill]

Yep, was diagnosed a few years back. It's a brutal thing to deal with.

If you have hypothyroidism you probably have Hashimoto's disease. That's what mine was caused. Most cases are.

My Hashimoto's disease was apparently caused by an gluten intolerance(that I didn't know had my whole life) although I've now been classified with celiac. Cut gluten out of your diet and I almost guarantee you'll see huge improvement. Almost all Hashimoto's/hypothyroidism people have gluten intolerance.

Look up the group Hashimoto's 411 on Facebook. It has 90k members all dealing with the same affliction. Join it, all the info and support you'll need.

 

[Dark1x]

Yep, was diagnosed a few years back. It's a brutal thing to deal with.

If you have hypothyroidism you probably have Hashimoto's disease. That's what mine was caused. Most cases are.

My Hashimoto's disease was apparently caused by an gluten intolerance(that I didn't know had my whole life) although I've now been classified with celiac. Cut gluten out of your diet and I almost guarantee you'll see huge improvement. Almost all Hashimoto's/hypothyroidism people have gluten intolerance.

Look up the group Hashimoto's 411 on Facebook. It has 90k members all dealing with the same affliction. Join it, all the info and support you'll need.

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I'm unsure if that's the case or not but I need to get it checked further. My younger sister has this.

My Dad and all of his siblings are hypo as well and my grandma was too soooo...yeah.

 

[Merrill]

I'm unsure if that's the case or not but I need to get it checked further. My younger sister has this.

My Dad and all of his siblings are hypo as well and my grandma was too soooo...yeah.

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To check for Hashimoto's you need to ask your doctor to check your thyroid antibodies - 100% essential to check. If those are elevated you have Hashimoto's. Which I almost guarantee you have. Mine were through the roof, but my tsh was only borderline and that's why I wasn't being treated by other doctors.

Waiting to long to cut certain food triggers out and to get a proper synthroid dose started can wreck havoc on your life.

Before I started treatment and before I was properly diagnosed hypothyroidism was ruining my life. Insane mood swings, heart issues, weight problems no matter how much I exercised, falling a sleep at work no matter how much rest I got. It ruined relationships and I was in so much joint pain I was near suicidal. Thank goodness I finally got diagnosed, medicated. But honestly until I cut out gluten most of my symptoms didn't go away.

Hopefully your not that far along or having near as many issues.

 

[davidnolan13]

yep. before i was diagnosed i was at college and by lunchtime i was so tired it was unreal. I was getting bald patches and weight gain was a pain even when watching what i was eating.

Now im on meds the tiredness is mainly under control plus the hair loss is better but the weight problems are still there , cold hands and feet are a bitch, joint pain is present and not always fun and i feel like my concentration is poor sometimes but my last test came back and apparently im on the right dosage.

 

[Dark1x]

yep. before i was diagnosed i was at college and by lunchtime i was so tired it was unreal. I was getting bald patches and weight gain was a pain even when watching what i was eating.

Now im on meds the tiredness is mainly under control plus the hair loss is better but the weight problems are still there , cold hands and feet are a bitch, joint pain is present and not always fun and i feel like my concentration is poor sometimes but my last test came back and apparently im on the right dosage.

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Yeah, mainly just random bouts of tiredness and weight issues even when eating very little. That's why I went in to have it checked, basically.

 

[Bakercat]

Dealt with it since a teenager. I take medication daily for it. Sucks cause I can't eat for an hour after taking or it won't work fully. I have the usual symptoms of weight issues and fatigue. I also have other endocrine issues on top of that. Dealt a bad hand I guess. Sorry you have to suffer as well OP.

 

[2Blackcats]

Both me and a friend got diagnosed with graves disease about a year apart which is at the other end of the spectrum from you.

My friend was particularly badly affected, especially with his weight.

Our sleep patterns were crazy and I felt like my life was being zapped away. Could feel my heart going 90 when I was trying to sleep. Still can't sleep without some noise to drown out my heart beat even though I'm better now.

Once we got the right medication symptoms subsided. After 3 years of meds I stopped taking them experimentally (with my doc consultad) and symptoms have stayed gone.

About 2 years clear now.

Actually after being naturally skinny my whole life I'm actually having to put in a lot of effort in to keeping weight in check.

Friend is better too.

The medication was a bit annoying in that it was every 12 hours for years. Doc scared me into taking it properly as the next step would have been radio therapy or an operation.

Hope you get the help you need soon. PM if you have any questions.

 

[msdstc]

crazy I just got a diagnosis of autoimmune thyroiditis, have the endo tele-appointment soon. What should i expect here? It really pisses me off that i've been complaining of symptoms for years and my sisters both have thyroid conditions along with my fathers autoimmune history, yet not one of my doctors thought it necessary to check any of this out.

Extreme fatigue, intense anxiety/mood swings, fidgety, joint pains, weakness, massively fluctuating weights, etc. all over the last 15 years. I know this is often linked with Ankylosing Spondylitis as well as Sjogrens, I've tested negative for those two, but that's not uncommon in people who have those conditions. What are some other things I can look out for here? What are the best treatment options? I know this sounds crazy but I don't entirely trust my doctors.

 

[Prophet Five]

I was diagnosed with it in September at 34 - my mother's side has a history of it and I should have been tested at 21... but I wasn't. So yeah. I'm on Levothyroxine and I feel mostly better but I'll have to have more bloodwork in June to see where my levels are at.

 

[Merrill]

crazy I just got a diagnosis of autoimmune thyroiditis, have the endo tele-appointment soon. What should i expect here? It really pisses me off that i've been complaining of symptoms for years and my sisters both have thyroid conditions along with my fathers autoimmune history, yet not one of my doctors thought it necessary to check any of this out.

Extreme fatigue, intense anxiety/mood swings, fidgety, joint pains, weakness, massively fluctuating weights, etc. all over the last 15 years. I know this is often linked with Ankylosing Spondylitis as well as Sjogrens, I've tested negative for those two, but that's not uncommon in people who have those conditions. What are some other things I can look out for here? What are the best treatment options? I know this sounds crazy but I don't entirely trust my doctors.

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You have an autoimmune disease. Me and almost all others that I know of was triggered by gluten. Cut it out for a month or two see how you improve. You'll need to be on synthroid to to make up for the damage that has been done to your thyroid by your immune system.

Gluten is molecularly similar to the enzyme in your thyroid and when you gluten(gliadin) gets into your system your immune system attacks it and then your thyroid. Cut it out completely and see if it improves your situation.

Before I cut it out I was insanely fatigued, in pain, brain fog and confusion etc. List goes on. The meds helped with the missing hormones and the gluten free diet improved all my other symptoms.

 

[msdstc]

You have an autoimmune disease. Me and almost all others that I know of was triggered by gluten. Cut it out for a month or two see how you improve. You'll need to be on synthroid to to make up for the damage that has been done to your thyroid by your immune system.

Gluten is molecularly similar to the enzyme in your thyroid and when you gluten(gliadin) gets into your system your immune system attacks it and then your thyroid. Cut it out completely and see if it improves your situation.

Before I cut it out I was insanely fatigued, in pain, brain fog and confusion etc. List goes on. The meds helped with the missing hormones and the gluten free diet improved all my other symptoms.

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Any floaters/tinnitus? I definitely believe I have a food allergy, I get a bounding pulse and can barely get up a flight of stairs after certain meals, but I've never raelly been able to pin down exactly what it was. I also have reactive hypoglycemia, not sure if that's tied to this.

 

[Merrill]

Any floaters/tinnitus? I definitely believe I have a food allergy, I get a bounding pulse and can barely get up a flight of stairs after certain meals, but I've never raelly been able to pin down exactly what it was. I also have reactive hypoglycemia, not sure if that's tied to this.

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Yep both of those too. I almost 100% guarantee you it's gluten. Cut it out, you will get better. I also had to cut out potatoes and dairy, most dairy...I still break down and have cheese sometimes.

Cut it out, and give it a couple months and you should see drastic health changes

 

[mordecaii83]

I was diagnosed with hypothyroidism around 22 years ago, been dealing with it ever since. It's definitely a constant struggle, and it's been difficult to narrow down the "proper" dose of synthroid because when I feel "right" the tests show I'm slightly over-medicating but if the dosage is lowered I feel tired, moody, and can easily gain weight.

The most important thing is to find a good doctor that's willing to work with you.

 

[Deleted member 9241]

My wife is a thyroid cancer survivor from when she was 11yrs old and has been dealing with post surgical hypothyroidism for most of her life. Unfortunately, it can still be a roller coaster at times for her even 30+ years later. It is also a lingering thought in her mind whenever she is feeling under the weather, tired, or "off". She wonders if she is coming down with something or if it is just her hypothyroidism.

 

[SinOfHeart]

I got diagnosed with hypothyroidism in 2011, I think every new doctor I see is confused by it though, since my family has no history of it and I haven't had major weight issues with it. Been on medication for it since then, and it has been fine (only get tested like once a year now since my dosage seems to be stable). I honestly got over my fear of needles due to having it because I was having my blood drawn with decent frequency early on.

I do get random occurrences where I feel super tired and sluggish, and I think it has also made me less tolerant of temperatures outside of a range I find comfortable. For the most part that doesn't happen too frequently unless I miss a dose of my medicine though. I have stayed on a regular workout routine (which I was on before I was diagnosed), so maybe that helped with weight related stuff I would have experienced. Keeping that routine (and just making sure I move around a decent amount in general) has become a bit harder to stay on since my area started shelter in place and I've had to do at home workouts and outdoor running instead of going to the gym, but I'm doing my best.

 

[MegaRockEXE]

I have the hyperactive one. Got diagnosed with Graves Disease about 6 years ago. I was feeling really tired, had a reduced appetite, lost a lot of weight and looked famished. After a year or two of treatment, I was looking and feeling much better.

Our sleep patterns were crazy and I felt like my life was being zapped away. Could feel my heart going 90 when I was trying to sleep. Still can't sleep without some noise to drown out my heart beat even though I'm better now.

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I have to say though, this sounds concerning because I've had this happen too, but more recently when I've tried having a caffeinated drink. Is it related to the disease? I swear, that night I thought I was going to die.

 

[Rödskägg]

So I was diagnosed with this earlier this year after being considered "borderline" for years. Started some treatment and felt better initially during first couple months but now I'm having the opposite effect feeling more tired than before. The problem is that I haven't been able to get it properly checked since the virus situation hit so I don't know what my levels are and dialing it in seems to take time. Just feeling frustrated by it. Anyone else dealing with this?

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Hi, sorry to hear about your problems and I hope you'll feel better soon.

Since you started your medication recently it's important to find a dosage that fits you. I don't know how you do it in the UK but where I live it's recommended to get your thyroxine and TSH levels checked at least once every two months until you have found a proper dosage. So, if at all possible, go get it checked as soon as you can. Also, please be aware that feeling better can take some time after you start your regimen, up to six months in some cases, even if your medication is optimally set.

Take care!

 

[FeedMeAStrayCat]

I've been on levothyroxine (synthroid) for at least several years now. Was lucky enough to get the appropriate dosage (I think? hah) on the first try as my blood work looked good after being on it for a bit.

Hadn't gotten it checked for a while, but was at a doc within the past few weeks as I've been having some other issues (thought it was COVID, but alas, tested negative). He did run a lot of blood work, including thyroid stuff. All of the blood work for my thyroid stuff came back great with the exception of TSH. Looks like it should be under 7 mU/L or so and my levels were 300 mU/L. I called and asked about it......and was told that it's nothing to worry about at the moment, I may just develop hypothyroidism and complications in the future. Uhh.. I've already got that, though?

My glucose levels were also low (56 mg/dl) and was told to eat smaller meals throughout the day, which is something I already do. Sigh.

 

[Dark1x]

Man, there's just these points throughout the day...feeling fine then suddenly I just feel tired/sleepy. Some days are fine, other days not so much. Frustrating. I managed to get blood taken this week and should have results on Monday so hopefully we can figure out what's up. Also tested for Hashimoto's.

 

[msdstc]

just got off the phone and confirmed hashimotos, testing for hashi-graves next. Super excited about all of this fun autoimmune stuff :(

 

[2Blackcats]

I have the hyperactive one. Got diagnosed with Graves Disease about 6 years ago. I was feeling really tired, had a reduced appetite, lost a lot of weight and looked famished. After a year or two of treatment, I was looking and feeling much better.


I have to say though, this sounds concerning because I've had this happen too, but more recently when I've tried having a caffeinated drink. Is it related to the disease? I swear, that night I thought I was going to die.

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Yeah, it can be related to it. Actually, once my doctor pointed out that my heart rate was going way too fast when I was at rest and that it must be driving me crazy when I'm trying to sleep I started to notice it way more. Not sure if it actually got worse at that point or it was just because he pointed it out so I was thinking about it more. I was drinking a hell of a lot at the time which helped me sleep not that I'd recommend that course of action.

Can't complain too much anyway as once I got my medication I responded quickly. Was cheap too as I was living in Mexico city at the time. When I came back to Ireland the same treatment cost a lot more.

 

[Tohsaka]

I've had it for years and feel like crap most of the time despite being on Levothyroxine and having my dosage upped at least once a year. I don't know if my doctor ever checked me for Hashimoto's, but after reading this thread I'm gonna ask him to next time I make an appointment.

 

[Izzard]

Lately I've gained weight, which is very unusual for me, but the biggest issue I've had is extreme fatigue. It's just awful. I'm going to speak to my GP as I've been wondering if this is thyroid related.

 

[Pau]

My wife is a thyroid cancer survivor from when she was 11yrs old and has been dealing with post surgical hypothyroidism for most of her life. Unfortunately, it can still be a roller coaster at times for her even 30+ years later. It is also a lingering thought in her mind whenever she is feeling under the weather, tired, or "off". She wonders if she is coming down with something or if it is just her hypothyroidism.

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Can you say more about this? Does the hypothyroidism show in her bloodwork or is it mostly based on symptoms? I also had thyroid cancer and got the whole thing removed... I've always had a lot of fatigue but my bloodwork comes back good so maybe I'm just lazy.

 

[Deleted member 9241]

Can you say more about this? Does the hypothyroidism show in her bloodwork or is it mostly based on symptoms? I also had thyroid cancer and got the whole thing removed... I've always had a lot of fatigue but my bloodwork comes back good so maybe I'm just lazy.

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She said her tell tale signs to get checked are "I don't want to get out of bed" tired and "brain fog" which manifests by her struggling to get out what she wants to say and the inability to focus on relatively simple tasks.

Whenever she has symptoms, she gets bloodwork right away. She said it shows up in her bloodwork (T3, T4, TSH). She needs to be at the low end of normal to suppress any natural hormones that are in her parathyroid. She says that when she has symptoms and gets blood work, the results have always been too low and she has needed her medication to trend upwards. She has had to deal with things like pregnancies and post partum throwing a monkey wrench into things as well.

 

[LunaSerena]

Lately I've gained weight, which is very unusual for me, but the biggest issue I've had is extreme fatigue. It's just awful. I'm going to speak to my GP as I've been wondering if this is thyroid related.

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Sounds like classic hypothyroidism symptoms, or at least like something worth checking out.
Blood tests will show if anything's going on with your thyroid.

 

[Deleted member 17643]

I have hypothyroidism as well as hypogonadism. I'm actually due for blood work but coronavirus is making me question an office visit.

 

[Jonnax]

Yeah, I got it. Well the confusing thing is that I had a diagnosis and spoke to a specialist who was like "Your body is producing anti-bodies so you're gonna have this for life" and a couple of years later my GP did a blood test and was like "you're fine" and took me off it. I did feel fine at the time though.

But the tiredness that I had then comes and goes. Tbh, it just feels a part of life.

 

[NESpowerhouse]

My case of hypothyroidism was weird. This was back when I was obsessively exercising and under-eating thanks to my OCD and developed anorexia when I was 11 or so. Doctors found that despite me rapidly losing weight, I also had an underactive thyroid. I can't remember specifically which medication they put me on to get me back into shape, but I do remember taking a lot of vitamin D and K supplements.

 

[Deleted member 4321]

Yeah. 88mcg a day. I'm lucky because I don't have any other autoimmune shit going on. I take a pill once a day and that's it. Every few years my dose increases slightly. Of all the medications I've taken, which admittedly isn't a lot, this has had the fewest side effects (I cannot notice any). It makes me feel better, and that's it.

Dealt with it since a teenager. I take medication daily for it. Sucks cause I can't eat for an hour after taking or it won't work fully. I have the usual symptoms of weight issues and fatigue. I also have other endocrine issues on top of that. Dealt a bad hand I guess. Sorry you have to suffer as well OP.

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FYI, the important thing is to be consistent. If you were to take levothyroxine and then eat immediately afterwards, less of the drug would be absorbed, so you doctor would need to increase your dose. However, as long as you were consistently eating after taking it, and eating the same type of food each time, your doctor could just titrate your dose up... and you could stay on that indefinitely (assuming your thyroid doesn't continue to lose function). Levothyroxine has a half of of around a week, so in 3 - 5 half lives (around one month later) you could get your bloodwork done and determine if you need to increase your dose.

The problems start when people are inconsistent, which results in variable absorption: taking on an empty stomach one day, eating food shortly after it the next day, forgetting to take it the day after that, and so on.

Can you say more about this? Does the hypothyroidism show in her bloodwork or is it mostly based on symptoms? I also had thyroid cancer and got the whole thing removed... I've always had a lot of fatigue but my bloodwork comes back good so maybe I'm just lazy.

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Most of the symptoms are non-specific (fatigue, depression, dry skin, etc.), so diagnosis is based on bloodwork.

The bloodwork is typically for TSH and then TSH + T3 and T4 thereafter. Your pituitary releases TSH (thyroid stimulating hormone) to tell your thyroid to produce T3 and T4. It works in a negative feedback loop: high levels of T3 and T4 inhibit the release of TSH. So if your TSH levels are high, that could mean two things: i. subclinical hypothroidism: you have normal levels of T3 and T4, but higher levels of TSH are needed to get your thyroid gland to release sufficient amounts, ii. hypothroidism: you have low levels of T3 and T4, and higher levels of TSH are still insufficient to get your thyroid to release sufficient amounts.

You had your entire thyroid removed? Do you take anything to replace the hormones it would make?

 

[RKasa]

Hi, sorry to hear about your problems and I hope you'll feel better soon.

Since you started your medication recently it's important to find a dosage that fits you. I don't know how you do it in the UK but where I live it's recommended to get your thyroxine and TSH levels checked at least once every two months until you have found a proper dosage. So, if at all possible, go get it checked as soon as you can. Also, please be aware that feeling better can take some time after you start your regimen, up to six months in some cases, even if your medication is optimally set.

Take care!

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^ Agreed to all of this.

My own story: have been dealing with Graves' disease for years (my doc thought it was Hashimoto's at first before I was tested for it!) and had radioiodine therapy done a few years ago, which put a stop to my sometimes random fluctuations from hypo to hyper. I was also switched from a generic form of levothyroxine to a name brand (Tirosint) about two years ago, and for whatever reason, the latter has worked much better for me and has helped my TSH and so forth remain stable. I had a telemedicine visit with my current endocrinologist just yesterday and she said my levels were "perfect".

Dealing with thyroid disease is a long journey that's different for everyone, but testing every few months helps a lot in sorting out the proper treatment. Also, if you ever start feeling worse and wonder if your regimen needs to be changed, call your doc right away and get it looked into sooner rather than later. I've had to do this at least a couple times in the past and it was always worth it. For a thyroid check-up, see if you can have the appointment done over the phone/via video chat, if an in-person visit is out of the question (you would still need to go out to have any blood tests done, though).