Hey, Goolarra, thank you for all your help when I posted my original question back in August.
I would really appreciate your help understanding what's going on with me now.
Back then, I'd inadvertantly been taking a double dose of thyroxine - 100mcg - for 3 months.
My results were: TSH 1.04 FT4 12.9 (10-20) FT3 3.5 (3.5 - 6.5)
Now, on 100 mcg results: TSH 0.03 FT4 15.6 FT3 5.8
My GP says that my TSH shows that I've maybe gone a bit hyper now. Totally DON'T feel it. And I've read that TSH is a bad indicator of how you really are, FT3 is the one to look at. So my FT3 looks very good and so does my FT4. I've read that high-normal results are what we should be aiming for, but most docs don't know it.
Should I argue with her recommendations to reduce my thyroxine? I'm still exhausted, horribly brain-fogged, in fact I'm exactly as awful as I was this time a year ago with lower FT3 and FT4 and higher TSH.
Another thought - could this be a delayed reaction to taking the double dose? It does take awhile for the thyroxine to work in the system, so could it take this long to hit, despite my reducing of the dose 3 months ago?
Thank you so much for any insight you can give me.
Your numbers are gorgeous...FT3 and FT4, that is. In my opinion, low TSH does not indicate hyper unless it is accompanied by hyper symptoms. Your FT4 levels have had plenty of time to stabilize since you got back on the correct dose, so I wouldn't suspect your double does is affecting anything at this point.
One of the problems with the symptoms you list...exhaustion, brain fog...is that they can be symptoms of both hyper ond hypo. They seem to be symptoms of "thyroid not right". Are there any other symptoms that would help sort this out? Have your symptoms improved or disappeared and restarted during the past few months?
It's very strange that on the double dose your FT3 and FT4 were lower and TSH higher than they are now on half the dose. I'm sure I should know this, but hypo brain...please refresh my memory, do you have Hashi's? When were you diagnosed hypo?
Thank you for being here!
Gorgeous! I like the sound of that! Gorgeous FT3 and 4 levels.
I don't know what type of hypothyroid disorder I have, but after having my second child 6 years ago I got impossibly skinny and energetic for a couple of months, then puffed up and was exhausted for the next year. I've been taking thryoxine for 5 1/2 years.
My symptoms are unchanged - I've felt terrible for nearly 2 years.
I've always loved to sleep, and really needed it, but I've needed to take a nap daily on top of my 8 hours at night. Lately, I've been needing 2 naps. I get awful headaches over and in my eyes and also at the back of my head. When I try to keep going, I slow down until I can barely move. I end up motionless on the couch, in blinding pain with my eyes and head. As you can imagine, I can't work or study and my kids and husband are missing out. I wake up every single day, feeling like I haven't slept.
I have a very strange problem with heat. I get sudden hot flashes about 10 times a day. When I eat, whoosh! Suddenly BOILING. Have to strip off to cool down. Just making breakfast heats me up, having woken up cold and shuffled downstairs in 2 sweaters. My family is freezing cold because it's 16 C in the room because the heat isn't on yet, but I'm opening windows so I don't faint. Taking the dog for a walk, everyone else is wearing coats and hats, but I'm in a t-shirt and exploding with heat. My neighbours think I'm nuts. My ob/gyn has tested me and says it's not early menopause.
The brain fog and exhaustion have been a constant problem throughout this time, even when my levels were all "normal". The heat problem was even worse when my levels were "normal" - I actually spiked fevers for 6 months, several times a day and ended up in hospital for a week a year ago, for testing.
I've been tested for every illness and disorder they can think of. I've had CT scans, radioactive tests searching for tumours, blood tests for infectious diseases and a spinal tap. Blood tests always show my C-Reactive Protein level at twice normal or higher, and often my platelets are high. My potassium is 5.5 - too high, but GP doesn't seem bothered by it. My Vit D is low (even though I take a supplement). My ferritin is low, but blood iron and transferrin are normal.
I'm currently seeing a rheumatologist, who's tested me for Lupus. That's negative, thank g-d. They really want to label it Chronic Fatigue Syndrome and send me away to sleep and struggle out of their eye-line. But they can't label it that unless my blood tests all come back normal. But there's always something going on. Mostly, this C-Reactive Protein thing is the problem for them.
I studied English at university and only minored in Biology, but I've got this strong feeling that my hypothalamus is behind this. My GP doesn't agree. I really want to see an endocrinologist, but they're in short supply round here and she's holding me off.
So, after my long story (sorry!) what do you think?
Well, there's a lot to think about! Some of which is definitely a bit beyond me...
I think antibody testing would be really interesting. TPOab and TGab (relatively inexpensive tests) would let you know if you have Hashi's and if that's contributing to your mish-mash of symptoms (hypo and hyper). Your description of the two months when you appeared to be hyper, followed by hypo is a fairly common scenario in the onset of many types of thyroiditis. Do you have nodules? Have you had a thyroid ultrasound? Some types of nodules "dump", rather than secrete, thyroid hormone into the bloodstream causing temporary hyper symptoms in someone who is otherwise hypo.
Have you been tested for pernicious anemia? One of our members has PA and cannot absorb vitamin B12 from the gut. She has to take injections every month. We hear a lot about people who have low B12 levels and low D levels, and it really negatively affects their ability to stabilize thyroid hormones.
I am firmly convinced that there is no such thing as Chronic Fatigue Syndrome. I think it's very often ill- or un-corrected thyroid disease or any number of other deficiencies, and doctors throw out CFS when they get tired of thinking. It's a shame we give them this kind of catch-all diagnosis when it causes so many to go untreated and remain miserable.
I see where you are coming from with your hypothalmus theory...it could explain the heat issue, sleep issue, and thyroid hormone levels to some degree. I find it a rather intriguing theory. If your hypothalmus is sending your pituitary incorrect feedback, your levels could be all over the place, just like your body temperature is. I'm afraid my knowledge in this area is limiting me to saying that I like the theory...I would definitely think it might be worth pursuing. So, if your GP doesn't think it's hypothalmus, does he have a better theory? How does he explain the labs getting "less hypo" after decreasing meds by half? There's something quantifiable that's bugging the heck out of me.
I'm going to post this now, but will think further on it...I always need a juicy topic for my 2 am ruminations! Sometimes, they actually turn into good 8am thoughts!
Hope I'm not making you blush, but you're smashing! (British for fabulous). Thanks for wading through all that info for me. It's a bit beyond all the MDs I've seen, too.
I don't recall having anti-body testing. I was too gaa-gaa, ill-informed and doctor-fearing at the start to take note. Post-Partum Thyroiditis is my guess, from my reading. I think I might have been hyper when I was pregnant. I didn't gain much weight (I blew up like a beachball with my first), and had terrible anxiety. I'll get myself tested for them.
I don't think I have nodules, but I've never had a thyroid ultrasound.
I had low B12 last year, but I'm taking B12 sub-lingual tablets now and I'm right in the middle of the normal range. I'm going to double my vit D dose to get that up.
Yep, doctors do get tired of thinking! It's SO annoying that they want to label this with CFS - an "illness" that has no real treatment. Diagnose me with something I can treat and recover from, you dolts!
I hope there IS something quantifiable, but I'm truly sorry it's bugging the heck out of you! Do you like a good challenge? This is it! My medical researcher friend keeps telling me I need a Dr House, like the guy in the TV show, to sort me out. Someone who specialises in the cases that stump all the non-genius docs. I'm looking for one...
My GP doesn't have a better theory. She thinks it's odd, and will retest in a few weeks to see what's happening. She wants me to reduce my thyroxine, but I wont yet. She's the same age as me (34) and I feel she really doesn't have the experience to handle this, so I have got to push to see an endo and get all my hormones tested and investigate this hypothalum theory.
The only other theory I've got, is that I've been taking anti-depressants since I was 18, with maybe 3 years total off for trying to get and being pregnant. Anything that can work on the brain in such incredible life-saving ways is bound to have other effects on it that are much less desirable. My psychiatrist is intrigued by the idea. I would love to get an MRI to check it out. My CT scans were normal. MRIs show alot more detail don't they? But it's very, very hard to get an MRI here.
I can't tell you how wonderful it feels to be able to share all this stuff. Thank you. I hope you had a 2am epiphany!
Hello! It's so interesting to hear of someone else who's had the hot-flash problem, and isn't menopausal. They gave up with you, too, huh? And you've got very similar thyroid labs as me! Great to hear. I hope that you're feeling great.
I'm working on optimising all my nutrient levels. I'll push to get my prolactin and pituitary looked at. I'm so bad at that. I've got to give myself a stiff talking too and get what I need.
We all need a House! Problem is...do you see all those TESTS he orders...I wouldn''t want to be being poked and prodded by his group. I do love the look he gets when the epiphany washes over him, though!
Speaking of which...no, I did not have one this morning. There is one other possibility in the thyroid realm, but the condition is very rare, and your TSH isn't right for it (unless there's something else going on with that). Anyway, you might investigate resistance to thyroid hormone. It's a genetic condition in which serum levels of FT4 and FT3 have to be extreemly high because of cellular resistance to the hormones. However, until FT3 and FT4 get above range (and sometimes way above) and patients are taking massive doses of thyroxine, the TSH is usually very high along with high FT3 and FT4, and it takes a lot to suppress it. Very, very long shot, but if you feel like reading...
I think it's easier to go in and demand and get an MRI here than it is to get FT3 tested! Easy to see where the profit is...
And what does your doctor think of the "hot flashes"? I get this, too, but to a much lesser extent than you and Sally. Usually, it's at night. I wake up at normal temperature, which very quickly turns into "get these covers off me". I'm most often able to throw them off before it turns into a night sweat. I also often get one in the morning. When I've finished my morning housework (active) and sit down at my computer to work, I get a sudden heat blast. Thyroid? Don't know. I'm past menopause and never had hot flashes or any other symptoms when that was going on...periods stopped, end of story.
Anyway, I do think that with your FT3 and FT4 so good, you probably have to start looking further, as you are trying to do. How are your BP and HR and weight and anything else you can think of that is controlled by the autonomic nervous system?
I've also been meaning to ask if you suffered any symptoms at all when you doubled your dose inadvertantly...that kind of increase would blast a lot of us right off the planet into hyper territory. Do I remember that you were not all that consistent in taking your meds?
Yes, you remember correctly - I wasn't aware that thyroxine should be taken early am.
So I'd take it after breakfast, after my tea. I had absolutely no new symptoms or any change in existing ones during the time I was taking the 200 mcg. Weird.
After you guys on here advised me on the right way to take my pills, I went back to 100mcg and took it an hour before breakfast. Still no change in symptoms, but my FT3 and FT4 went up nicely from FT3 on the floor and FT4 mid-range. TSH is undetectable. Should have happened during my crazy dose days, only more exaggerated. Why didn't it? I'll investigate thyroid hormone resistance - worth a shot.
Thank you for the suggestion. And one link leads to another, so who knows what I'll stumble across.
Unlike you, I don't get night sweats. I'm usually a bit cold and wearing a sweater, whilst my cold-all-day hubbie is in shorts. I steal his heat. It's only fair. What's his is mine, after all. Do you get got during your house-work action? I usually get hot while moving around, but later in the day I'll get a heat-attack out of no-where when I'm sitting down studying. But when I curl up to watch TV, I get bone-cold.
No rhyme or reason to either of our heat-flash problems. Night-sweats is a more usual problem and can indicate a whole multitude of things. Have you had yourself checked out?
I'm hoping that when menopause hits, I'll be like you and be hot-flash free. I figure I've already done my time with that!
I'm from England, but live in Cyprus for my husband's work. I love it here. Great climate, fabulous people. Is FT3 testing cheap for you guys, and MRI a money-spinner? My doc does my FT3 every time I walk in! We only have one MRI scanner here and theyr'e very stingy with it's use.
Autonomic Nervous System? Hmm. My BP and HR are ok. I gained 30 pounds 2 years ago which I just can't shift. But that co-incided with a change in anti-depressant and I think that's the cause. My breathing is ok, I had asthma caused by cold air in England. Don't have that problem here - it doesn't go below 15 C. Nope. Coming up blank on that front.
I'm going to post my problem on the Unexplained Symptoms forum. I think it's called that. I think this fits the description! Thanks for racking your brains for me.
It is weird...I don't know if breakfast could block absorption so much that it would make up for doubling your dose. Is you breakfast really heavy on fiber? Fiber is the biggy when it comes to blocking absorption.
Deb brings up a good point. Once again, I don't remember if you've had antibody testing...certainly worth the price of admission.
You do have to remember that it often takes a while after FT3 and FT4 are adjusted properly for symptoms to abate. Your body still has to heal, and the time it takes it to do that is somewhat dependent on how long you've been hypo and just how many symptoms you've accumulated along the way.
I do get hot while moving around at times...I figure that's pretty normal (something's got to be). It's only the out-of-the-blue heat attacks that are mystifying. The night time stuff started when I was overmedicated for a short time...now I think it's become habit to some extent. I spent about 57 years sleeping like a log every night, didn't even move. Since the hyper phase, I can count on one hand the number of nights I sleep through. And it ANNOYS me, which doesn't help a thing! I used to steal my husband's heat, too (if he'd let me - get those feet off of me, you must be dead!). Not any more. I haven't explored it at all (lousy health insurance). I think it's thyroid related and I might still be very slightly overmedicated. However, my FT3 and FT4 are both quite low in the range (I've tried moving them up with disastrous results). My endo is okay with that, but I think he'd think I was out of my mind if a asked for a decrease.
Doctors here don't like to do FT3. They think it's useless and want to assume that if FT4 levels are fine, so are FT3. Translation: most of them don't know how to interpret FT3 or how to treat if it's low and don't want to muck around with T3 meds. FT3 is a $10 test at my lab. I don't even know what an MRI costs, but I'm assuming a couple of grand just gets you in the door.
I was just asking about the autonomic nervous system because of your hypothalmus theory. Since the hypothalmus is the clearing house for all the feedback from it and routes it's info to appropriate places, I thought it would be interesting if other automatic responses were whacky...like your temperature. Has anyone attempted to explain your temperature variations? And does your body temperature really go up? Or is it a "perceived" heat? Oh, wow, now you have me thinking (not just about you, but about me, too!). I've just been off reading about the parasympathetic nervous system versus the sympathetic nervous system. Very interesting...don't know what implications it has, if any, in terms of treatment, but it sure is fascinating. I've always felt I had a rather easily triggered fight-or-flight response. I feel like my parasympathetic nervous system is underactive (or slow) and sympathetic is overactive.
The "Unexplained Symptoms Forum"!? Is this MedHelp's X-Files?
I eat 2 slices of whole-grain toast for breakfast, or a bowl of oatmeal. And a cup of tea. I AM English, after all. Enough fibre and caffeine to affect absorbtion?
Wow, the price of tests is a terrible factor in an inverse way over there. We have a public health system, so they need to get value for money. It seems like the system over there is capitalism gone mad. But socialism isn't working so well for me, now I want an MRI!
For a year, my body temp acutally went up. I'd wake up normal, get a hot flash when I moved around and it'd shoot up over 38 C. Then I'd sit for an hour and it'd go down to normal. I'd get spikes like this up to 6 times a day, whenever I was moving. Doing laundry, sweeping the floor, anything at all would have it shooting up. And it was great, because I'd also get a massive surge of energy! I was so energetic in the fever-hour and felt marvellous - just needed to strip off and lie down on the cold tile floor every so often!
Then I'd sit and gradually cool down, and get a bone-deep chill. Layers back on.
In the evening, I'd get a heat flash out of nowhere (like now) when I was sitting. Only with a fever. I ended up in hospital last December when my fever hit 40 C and I was a bit delirious and my GP decided it was time to get me thoroughly investigated.
By the Spring, the fevers had stopped. Don't know why. Hot flashes continue. And I no longer get that very welcome burst of energy. My floors aren't so clean these days. And you should see my oven...
Weird, hey? I was under-medicated at the time - my GP didn't want to raise my meds in case it exacerbated the heat problem. So your heat flashes started because of over-medication? Maybe it started off a physiological habit that your brain can't quite break?
I posted my Brain and Pituitary Tumours and Rare Diseases. Yep, a bit X-Files! I need Dr House, and Mulder and Scully on my case! I got a response on the Brain Tumour Forum, which scared me a little. Ok, a lot. A woman had very similar symptoms to me and was found to have a Pituitary Adenoma (non-hormone secreting). She urged to me get seen by a good doc. She's had 2 brain surgeries. Scary. But if it's the cause, it looks curable - or manageable at the very least. I don't think it's a cancerous type of tumour - more an interfering-with-function obstruction.
I'm seeing my psychiatrist right before X-mas. She's the head of her department and is very concerned about all my physical problems. She's confident it's not psychosomatic or psychological in any way (I keep asking her, because I'd actually be very relieved if it was - some psychotherapy and I'd be set). She's got the connections to get me to see the right docs and get an MRI.
That is a fair amount of fiber and caffeine...there might be at least a partial answer there. Oatmeal, yuck!, how can you do it? And isn't it porridge?
We don't have a health care system here...we have a medical market. If it WERE just capitalism gone mad, it would be to some extent self-correcting. However, with all the government's bolstering of the drug and medical device market, doctors, hospitals, etc., it is far from laissez-faire capitalism. Our local "non-profit" hospital is indeed non-profit. However, they have a "campus" which includes all kinds of for-profit testing facilities that are part of their parent company. So, of course, they manage to keep all those expensive tests coming. It's a major mess, and it needs fixing, even if we don't get it all right right off the bat. We have three hospitals in the area that service all of central and eastern Oregon from the Cascades to the Idaho border (about 200 miles long and 150 miles wide). They have all recently been bought by the same parent company. Sound like a monopoly to you? Enough venting...
So, back to the parasympathetic and sympathetic nervous systems. The temperature spikes and energy you describe sound a lot like a fight-or-flight response from the sympathetic nervous system. After the "threat" is over, the parasympathetic is supposed to kick in with norepinephrine (noradrenaline), etc. to reverse all the chemicals that the sympathetic kicked in. The para "slows HR, increases GLAND and intestinal activity, and relaxes sphincter muscles". So, what if it doesn't kick in or kicks in too slowly? I don't know. Also don't know if there's anything you can do about it. Just something to consider...
Your fevers DO sound SO hypothalmus.
Yeah, when I was overmedicated (last spring), it was fortunately time for spring cleaning...you should have seen my windows shine! And, now that you are making me look back on it (thanks), I'm realizing that the heat attack I get in the morning now is at just about the same time I used to get the burst of energy (actually, it was more antsy than that, like I just couldn't sit still and had to go clean something - my oven's self-cleaning, so big help it was!). Interesting...
From what I've read about pituitary tumors, a very low percentage is malignant...as you say, just interfere with the proper functioning of the gland.
Sounds like your psychiatrist is an excellent resource. Maybe she can shed some light on the para/sympathetic nervous systems and if there's any way to bolster one and suppress the other. I've been doing some research, but finding mostly a lot about lab rats. I'll be interested to see what she has to say...
Am I glad I don't live in the US! It's bad enough feeling so at the mercy of my body, without having to contend with a money-spinning mess. Ours isn't perfect, but I think most people feel that the system is there to serve them, not the other way round. But I still envy the ease of getting a darn MRI over there!
Yes, I should have said porridge, but my American friends here have no idea what I'm talking about, so I thought I'd better use the US name! I love it - it's not that ghastly instant mush that looks, and tastes, like wallpaper paste, "Quik Oats". Bleugh.
I use rolled oats that I buy in the health store. Half a cup of oats, a cup of water, zapped for 4 minutes. With a little sugar and some milk, it's creamy, indulgent warmth in a bowl. Really!
Brain fog has descended on me for the last 2 days. Together with the ever-present headache, I've had a hard time making my brain work. I've made note of your para and sympathetic ideas. I just can't get my brain to work, but as soon as it re-ignites, I'll be back trawling the net for more info.
But it's really interesting that you think my hot flashes sound very hypothalamus. My digestion is the only other autonomic function I'm having trouble with. IBS for 5 years. Off and on. Terrible with my period. My GP says that it's commone for female hormones to play havoc with digestion each month. Have the scientists you'e found investigated menstruating lab rats?
My heat flashes also made me antsy, just like you - gotta move, gotta DO something! I could have used that these last few weeks. I can barely get the basics of housework and childcare done. But I know that I'm not depressed. There are so many things I want to do, but can't.
But I'm enjoying the small things in life. The changing colours of the clouds and their shadows over the mountains out my window. The varying greens, the amazing pink of flowers against the stormy sky. I've been depressed - I'm totally not there. Which makes it all the more frustrating. I've spent so much of my life being depressed. I'm FINALLY in a good place, psychologically, and my body and head give out.
I'll definitely let you know what my psychiatrist has to say. I'll be taking my theories, and yours, to her. Fingers crossed!
I have been having the 'hot flash' problem for some time now. Docs haven't paid any attention while it is not unusual for me to have to grab a tissue to catch the sweat as it drips off me while I am in their office. I have these sudden melt downs several times every day.
I was at the endo on Tues and he said he could tell just by looking at me that I was very hyper and was unhappy with me for not being able to stay awake if I take the number of pills he was recommending each day. Just got a call and found out test results are normal. So, I am "normal" so all is great and I am feeling good. To bad that isn't the case and I feel like pure poop....
Hello again! It's the British lady with the weird heat problem and the lowest of the low TSH..
How are you? I finally got to see a Neurologist. It was a horrible experience. She told me that all of my symptoms are psychosomatic and firmly ended the appointment.
I was very, very upset. Especially since my psychiatrist (treating for depression)keeps telling me it's NOT psychosomatic and I need to be evaluated by a neuro. My GP chose this neuro for me, and once I've been to see my psychiatrist to get a supporting letter to show these bone-heads, I'll be back at the GP to get a decent neuro. And make a formal complaint.
The Neuro thinks that my heat problem, terrible headaches and exhaustion are due to me intentionally taking too much thyroxine. She bases this assumption on my low TSH with normal T3 and T4.
I made an honest mistake with my dosage for 3 months during the summer and was absolutely shocked that I could have been so careless as to not read the label on my little pot of pills to see the GP had changed me from 50 mcg pills to 100 mcg. I just kept right on popping 2 each day to get my 100 mcg daily dose. Once I realised, I dropped right back to 100 from the error of 200, and my GP dropped me further, to 87.5 mcg to correct my TSH (I know, I know - with such good T3 and T4, she should have left me as I was, but I'm JUST the patient, huh!).
Ghastly neuro wasn't interested in the least. These are my blood results and they clearly tell the true story - I'm merrily popping too many pills. But why? Why on earth would I do it intentionally? I've read enought to know that it's dangerous, it can make you really sick, it certainly doesn't help with hypo symptoms... clearly, this Neuro thinks I'm crazy.
I'm going to get a referral for an Endocrinologist. What I want to know is: Can the Endo do a test that proves I'm not intentionally over-dosing on thyroxine?
Sounds like a major mess. My computer is giving me headaches today, so forgive me if I'm a bit short.
There is no way that I know of to test the dosage the patient is taking. However, you do have to have a prescription to get this stuff, so it's kind of difficult to intentionally take too much without running out and then not having any to take, isn't it?
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.