I am sure most of you know my history with hashi;s and about 2 or 3 weeks ago I had this feeling of all swelling go away, my nodule seemed to shrink to about half it;s normal size, the tightness in my throat went away and I felt "normal" well, now, the swelling feeling is coming back, not as bad, but when I swallow it is there again, I am feeling that achy feeling but now I have a constant upset stomach, feeling nervous and I am so hungry and I cannot stop eating! Could I be entering into a hyper phase?
I just had my labs done ( but am waiting for free t4 to come back ) and it showed hypo. I also was reading up on these adenoma;s ( I have ) and see where they can actually produce "hyperthyroid" itself while a person is also having hypo because of hashi's.
I am very confused and would like anyone';s opinion on this hyper phase I am feeling.
Thank you so much. I have NO faith in dr's and can only rely on this board for help it seems.
I am supposed to be starting thyroid meds on the 20th but now I am worried if I am in a hyper state do I want to do that? I will post my free t4 when it comes back and my tsh was 1.9.
Hi Karen,
I don't know anything - but I think I remember we both had this unusual shrinking of the thyroid goiters about the same time - I recognized myself in the mirror for a week! But mine is swelling again too...I will say that when all this was going on, I was rageful and hysterical and couldn't figure out why - and my pulse went up and I was so hot - constant upset stomach - many trips to the bathroom which was a sudden change from the usual trouble going at all - I thought maybe I was hyper too....I still don't know what happened or why - but now it's swelling again and I can feel it when I turn my head to the right - It was so nice for awhile not having something stuck in my neck! But I'm no longer hysterical or raging and my pulse is below 100 again....I was on 150 mcg of synthroid at the time - I actually lowered it myself during that period, but last week my endo lowered it to 137 mcg because ultrasound did show the nodules had shrunk - personally I don't think synthroid has anything to do with my nodules because I went from 1 to 7 while on it - but I do think it helps with my metabolism, some of the brain fog, and several of the other symptoms. I don't want to ever be without it as long as I have this malfunctioning gland! Hope you feel better....
Take care,
Kathy
PS One last thing - my TSH was never higher than 1.7 prior to treatment - I think it's a pretty useless test since I had a nodule causing all kinds of problems for about 2 years before an endo found it - everyone else kept saying your thyroid labs are normal...
So your tsh never rose above 1.7? It was your nodules that were causing the trouble, hmmmmmm, see that is what I am thinking from doing my own investigative work. I don't think these lousy thyroid labs mean anything when you have nodules. I also read where the kind of nodule I have can produce it's own tsh and your thyroid isn't producing anything, only the nodule is producing hormone after a while. It is so hard.
Are you thinking of getting yours out? Can I ask what kind of nodule they determined yours to be?
Thanks for the hint about your tsh never being above 1.7! That says so much to me!!
Karen
Oh, and yes, we both had the mysterious shrinking at the same time and now I see we are getting it back at the same time. Very strange. I can feel mine turning to the left. It felt wonderful for the 3 weeks it felt empty in there. I wonder what would cause them to shrink and swell? I also read that it can be common with an adenoma.
Hi Karen,
Well - I don't know what type of nodules I have - I've never had an uptake scan and never had a biopsy - I guess my endo is pretty confident based on their appearance on ultrasound that they are benign multinodular....how did you find out yours were adenoma? Is that fluid filled? I think mine are solid - which makes the whole shrinking thing even more mysterious....I can feel mine when I turn to the right (right side was where the first nodules was and has always been larger than the left) adn I can feel it when I lay down at night again - I hug a pillow to keep my collarbones from pushing on my throat - if that makes any sense....I wish I was as confident as my endo about the nature of these nodules....but the shrinking thing just confirmed it all for him - it did make me feel better that if they were malignant they wouldn't have shrunk like that.....I am seeing an ENT Tues to see about this choking thing - It's awful....
I am thinking about getting it out - I can't right now with work - but perhaps in three months I might be able to consider it - I don't like the idea of dealing with these for years and checking every six months with ultrasound to see if any have gotten out of control - plus I can't live with this choking thing - I did see a surgeon about a month ago to get his opinion....but he said he would take it out if I wanted, but that might not cure the choking if it was coming from some other cause - so he's the one sending me to the ENT......
K
K, I get the choking this myself. It doesn't hang around forever, more like I will have it for 3 or 4 days then it will go away and then it will come back. That type of thing. It feels like someone has their hands around my neck.
I know exactly how you are sleeping because that is how I have to sleep, or I did before this mysterious shrinking. I don't have to again yet.
I had a biopsy after my ultrasound which was how they came up with an adenoma. I am not sure about the solid nature, but I do believe that to be true which also confused me to why it could shrink. It did ease my mind to about maliglancy because I cannot see a malignant nodule shrinking or changing the way it feels all the time. I mean my swelling is coming back, but it is NO where near to what it was. I was getting to the point I could hardly look to the left. I was feeling so achy too in that area which also all disappeared after an entire year!
I am like you, I cannot imagine living like this for years and years, but, if it is functioning ok, you hate to have it out, I guess. I have an excellent ent that has treated me and my son for other problems so I suppose he is the one that I would go to to have it removed. That is my thought anyway. My Mom is the only female in her family to NOT have thyroid issues and I knew I wouldn't escape it. I too have had aunts have to get theirs out due to size so I just am thinking it will be a constant battle for us.
Keep in touch and again thanks so much for bringing to my attention that the low tsh doesn't mean diddly!
That's exactly how I describe it - someone's hands around the base of my neck - mine is constant unfortunately....You keep in touch too - sounds like we have a lot in common....
Take care,
Kathy
I swear I'm seeing my own story when I read both of your posts. You're not alone. I was great for a couple of weeks. All of the sudden I feel like someone's choking me/hyper symptoms....not pleasant. I am awaiting medication/help from an endo. I also have an appointment booked with a holistic doctor. I wish you both luck.
mimi,
You are one of us too. We will have to keep together on this and see if we can come up with anything......also kcty has this too. Hopefully she will catch on to us here.
As far as the choking. I also feel like I am not going to be able to swallow when it happens, I always can and have no trouble it is just a sensation.
Can I ask personal questions here? Do any of you notice big changes in your monthly cycles?
Hi Karen, Mimi,
I'm on BCP so can't notice changes in cycle very well - although I missed my last period (while the neck got small) and haven't missed one since 1987! I'm not pregnant - checked - So I don't get that either...as for the choking - I've been doing some reading and since acid reflux can be a symptom of hypo I am wondering if my choking isn't really caused by three things: thyroid nodules, acid reflux, and anxiety?? Will try to keep you all posted....
Best wishes,
Kathy
Oh Kathy,
The year before I was diagnosed with hashi's and these nodules I had the worst reflux imaineable! I mean I was eating zantac and tums like candy. FINALLY, I got on Prevacid and that did it for me. The thing is that it took another year for anyone to figure what was wrong.
I really think this has been going on for about 8 years. Back then I started in with severe anxiety and extreme weight loss with nervousness. I wasn't sleeping, eating or anything else due to extreme anxiety. I ended up developing severe panic attacks and became somewhat agoraphobic. Of course I don't know what any bloodwork was but they did check my thyroid. Hindsight being 20/20 I now realize that I probably had the beginning of this mess back then.
I got the anxiety under control with medication that I am still on and then over the next few years had the opposite happen. I gained 50 pounds over about 3 years, was so tired I could barely move and had a whole host of other problems. Over the last 2 years I have had the extreme weight loss again, nerve problems and the reflux was in between the two. I now know that I was probably dealing with this all these years but the internet sure opens up a whole new way of investigation instead of relying on these ridiculous dr;s to tell us nothing!
I have always been regular as clock work, but, since the swelling went away, my cycles are only 21 days apart, last an entire week and are so bad I am about housebound. I think this whole issue has played a huge role in my life and I wasn't aware of it til last year.
I have read so much info on hashi's and having a possible nodule/adenoma that can produce hormone that can make it seem like your thyroid is the one functioning when in actuality it is the nodule that is producing the hormone.
I guess we will stick this out together and see if we can come up with things and keep sharing the info. That is just priceless to me!
Hi Karen,
So you had a change in your cycle during the neck shrinking too then! How ironic - I suspect my thyroid/estrogen/etc was all out of whack in response to the rapid changes in the thyroid....I don't know....
I too, in hindsight have been dealing with this a long time - It seemed to start right after I finished grad school (in 2000 at 35 years old!)....Just a couple of months after graduation I started gaining weight - was 117 lbs after a year I was up to 175 lbs with TSH never higher than 1.7 - they kept checking because of the rapid weight gain - but no one looked for a nodule....After two years of this I was compeltely unfunctional - a mental zombie - I couldn't go to the bathroom at all - went through all these unpleasant GI tests (where they diagnosed the GERD) but never thought it could be thyroid (I also have IBS) so the change from loose to constipation was a dramatic one for me - it had always been the other way prior to that time....I am a scientist and almost lost my job then - because there was no diagnosis for mental zombie! And I could not think critically enough to work....thank God in Aug 2003 I saw an endo who found the nodule...I've lost 35 lbs and regained some ability to think (but my memory is terrible still)....I am still concerned about keeping my job....
Come to think of it - also when my neck got small I got terrible reflux - and stomach cramps....all weird...
and yes yes yes on panic attacks, major anxiety, depression, and agrophobia - I really can't answer the phone...we have caller ID so I'll answer if it's my husband....trouble making calls too....
The other thing that started then adn really is not better is extreme insomnia - not a hypo symptom - but was a terrible change for me - I used to sleep so well (maybe too much) before the thyroid nodule....
Not much of this makes sense to me and believe me I've grilled the docs adn done my research and I can't even really figure out what has happened to my health....I think the docs do their best, but I think they really don't know either a lot of the time - people are so individual....
This is so helpful to me too - as an invisible disease - no one who doesn't have it can understand - it's hard to defend at my workplace, but my boss so far has been very understanding - don't know how long he can continue to be though....I have a huge, very important project due on June 30 and I just sit here and stare at the computer!! Maybe tomorrow will be a better day -
BTW I found a helpful book - can I list books here?? I don't know - It's called the art of getting well...written for people with chronic illness to improve the quality of their lives...the author is a nurse who got MS. It's very practical and easy to read (which is about all I can comprehend right now)...Has a very positive outlook....
I will see the ENT Tues - will try to *remember* to let you know what he says...
Thanks for your support - I am too tired to go out to one - so finding friends like you here is very important to me!!
All my best wishes,
Kathy
Somehow I feel I fit in with ya'll! I'm hashi's with one nodule, labs stay just in range, but feel hypo and hyper. I have severe heat intolerance, and in deep south Louisiana, that's miserable throughout the summer with 95 degrees and high humidity! I've also wondered how much these nodules do on their own, as I don't tolerate thyroid meds. I thought maybe my levels were sitting at fragile levels, and then the thyroid meds just broke all hell loose. I never had an uptake scan, but the fna said it was lymphocytic thyroiditis, so I assume that means it is not composed of cells that would work independently? The doctor never acted like it was anything.
And I understand with the work issues. I got my RN degree and 10 months later had to quit work because my body doesn't handle any stress(illness, no sleep, family emergencies, etc.) I even tried volunteering at the school's library, but after a few months, the anxiety kicked in. It has left me with no outside work ability, even though my husband and I have a home business.
I can work from home because of the no-pressure!
I hope we can one day understand this fine-line of semi-working thyroid, and, importantly, how to handle it and treat it so the body gets the best scenario while the thyroid fizzles out.
Karen
Last edited by sue1234; 06-11-2005 at 08:24 AM.
Reason: clarification
Kathy,
I don't know how you are working at all feeling like this. This is one of the most confusing, frustrating things I have ever dealt with. It is so hard to explain to people that I have "so much wrong with me" when I LOOK normal. It is very frustrating and my own family ( not hubby or son ) but parents, sister, and such think I am just a "whiner." They have know idea the mess I live in. Thankfully my husband does and in fact his Mom is dealing with this herself so that has been a HUGE help.
I was set to make an appt to have mine out when my Mother in laws, best friend, had hers out due to hashi;s and she blew up like a house! Gained 60 pounds inside of 3 months, her face broke out in terrible acne and her hair was so thin you could see her scalp. It of course freaked me out and I didn't go any further. Now, I am back to thinking about having mine out. I am so sick of this.
I am also sick of the worry of what if these nodules could be cancerous or they missed something on the biopsy and all that mess that runs through your head when you suffer from chronic anxiety.
I too had the horrible insomnia. I didn't sleep for 2 weeks straight. I think mine was more from the anxiety/panic but that of course was caused by the thyroid being a mess. My dr put me on trazadone for sleep 8 years ago and it worked wonders. I NEVER had to worry about that again and I can take just 25 mgs at night and have for 8 years.
Today I have NO swelling again. Isn't that weird? My stomach is torn up and I "feel" funny. I went through the whole SEVERE constipation issue myself. I mean it was awful. I am also in pain management for severe tmj problems and you know that taking pain meds makes you constipated to boot. Both of them combined was horrible. I told my dr about it and she said well eat some bran! Good grief, bran? We were talking way past having to eat some bran! I have to take a correctol everyday or I cannot go! She then told me not to do that, that is for when you are old. Geez, dr's sound so silly sometimes.
I too had the whole upper GI because of the severe reflux but they said just that..........I had reflux, yeah, I knew that!
Kathy I cannot tell you how glad I am to find someone who is dealing with this same stuff!!! I mean I had this terrible swelling for an entire year that was bigger and bigger and then when it went away after a year and I hopped on to this board and found out you had just had the same thing happen, it was like turning on a light switch for me! Thank you for taking the time to post and for explaining all you have been through. It is like reading my own story.
Please let me know how you make out at the ent appt. I am very curious as to what he will say. I have a good ent that has done surgery on me and my son and have thought about just calling him and seeing if he will take this miserable gland out himself. What do you think?
Have a good weekend.
Karen
one more thing...........the tech who did my ultrasound remarked how I have a nodule in the isthmus of my thyroid, she said that would account for the choking feeling because it runs between the 2 lobes. It sure made sense to me. of course I don't have the choking feeling today.........yesterday I had it bad and today it is gone but so is the swelling feeling again.
Thanks Guys - This is helping me a lot too - Yes I have seven nodules - but no biopsy or uptake scan....I started with one nodule when I gained 60 lbs with normal thyroid labs. Since being on synthroid I have gone up to seven nodules - I am so happy yours has shrunk Karen! Even though it gives strange symptoms it's SO much more comfortable! I don't think mine is going to - I'm still convinced it shrunk due to two CT scans with iodine in three weeks time - but the docs say that wouldn't have been enough of a dose...
I have TMJ too - but fortunately it's been under control for some time - plus when I sleep I clench and grind and since I haven't been sleeping - not as much TMJ trouble! But lately I got ambien - usually it doesn't touch the insomnia but my doctor is letting me take it with klonopin (for restless leg syndrome) and I am actually getting some sleep and dreaming - unfortunately I feel even more fatigued than I did when I was only sleeping 2-4 hours a night (the last three years)....
It's very hard to work and I don't know if I can keep my job - I keep trying to scratch away - my boss is okay with me working from home SOME of the time, but not all the time....those days when I shower get dressed and the simple walk up to the office require that I lay on my office floor once I get there and rest up - needless to say any hope of productivity is when I work at home....
Glad your hubby understands - mine does too - he's been good to me through all this - even when I become raging b---h woman!
Yes in 2002 I couldn't go to the bathroom at all without ex-lax - they told me to eat more fiber! (Did we have the same doc?? Mine was male though) I also have IBS and fiber is like one of the worst things for it - so that didn't go well - at least they did every test imaginable and didn't find anything worse than reflux and hiatal hernia....the only thing that got me moving again was synthroid! -
And Sue - I too live in the south with extreme heat intolerance - I have all the hypo symtpoms except for being HOT and sweaty all the time - and my face is red and flushed and I prefer the A/C set on deep freeze (poor hubby)....I'm in Okla....
Best wishes to you all - will let you know about the ENT...
Take care,
Kathy
Sue, nice to have you join us and sorry you are living in this hashi;s hell. My report also said lymphocytic thyroiditis.
I wonder what would happen if our thyroids were functioning ok and they just took these stupid nodules out?
Kathy, do you have a nodule on your isthmus like I do? That is what the ultrasound tech told me would cause me to feel like I am choking because the isthmus runs in between the 2 lobes and it is right in the front of your throat.
I cannot believe yesterday I thought the swelling was coming back and today nothing.
Can I ask do you guys ever get pains and achiness in your thyroid/nodules? I get it off and on but since the swelling went away I have not had any til yesterday when I felt the swelling coming on. Today I have nothing. One other thing I have noticed............I always know when I am going to start because my thyroid will hurt and will feel just huge for about a day or two. Of course, my dr told me that was impossible for my thyroid to "predict" when I am going to start, little does she know.
I guess my biggest fear in leaving her is that she is willing to treat on symptoms and does not believe it has to be labs that dictate meds. I hate to leave her for thyroid treatment and then can't find anyone else who thinks like her. She also got me in for a biopsy the day my ultra sound came back because she knew I was worried.
Nice to meet you sue and sounds like we are all in the same boat here.
karen,
I think I do have a nodule on the isthmus - but I am not positive - When I went from four nodules 10/22/04 to seven nodules 1/27/05 my neck was completely sore - I could almost feel them growing into my throat - like they were raw and tender...they haven't felt like that since - I think it was a rapid growth phase or something - now I just have the pressure and discomfort....
Sounds like your doctor cares about your emotional and mental health as well by doing the biopsy - I have been crazy worrying about that 5% since 8/04...but then like I said - I was greatly relieved with the sudden shrinking since I don't think malignacies would do that....
I too grapple with management versus surgery....and then post-surgery there's still management of hypo symtoms - but I think it can be easier without the gland spurting out hormones irregularly....my endo sure is against surgery - my largest nodule was about 1.7 mm I think....but seven of them - I think they really are smaller now -but growing again - not as big as in Jan-Mar though - for that I'm grateful! But some of my symptoms seem worse - my fatigue and brain fog are really worse - job stress?? Who knows...
sorry for rambling....
Take care,
Kathy
Hey, ramble away., I am just so pleased to have met someone who is in the same boat as me and also is experiencing the same symptoms. I just don't know how to even explain all of this to anyone let alone a dr.
I too feel like that a malignant growth would not shrink and grow. I don;'t know how you are doing it with 7 of them. Hashi;s causes major destruction of the thyroid so I know that the inflammation can be bad. I read that it is like having arthritis in your gland. Inflammation, swelling, pain and then you can have good days.
I am hoping to get another ultra sound soon since it has been a year. I think that yearly scans are important so we can also know if new ones are developing. I am also going to try and insist on another biopsy if I can.
Have you ever had this..........................in the past few weeks, since the swelling went down, I am ravenous!!!!!! I mean I can eat a huge meal and in 20 minutes I am so hungry again. I am so afraid of the way I am eating. Usually I am the opposite and have no appetite. I am thinking this is part of being hyper.
Karen,
Before my thyroid went bad I could eat and eat and not gain weight - always 117 lbs or so 5'3". THEN! All the sudden I gained 60 lbs - I was eating more than I used to really - I was having terrible cravings for doughnuts!! But I don't think even with all the doughnuts I could have eaten enough of them to gain that much that fast....I don't think I was really hungry either - just having cravings....I dont' know if I've ever really been hyper - that's the thing about my situation that makes me unsure of hashis - although maybe in the old days I was always hyper adn that's why I could eat and eat??? The only time I thought I might have been hyper was that couple of weeks ago when it shrunk and I was rageful and hysterical - my BP went up of course then, but my pulse didn't go up a whole lot - I think the resting pulse rates is one of the best ways to tell...even with my labs like I showed you on 150 synthroid, I haven't gone hyper that I know of....but then I have a lot of mixed symptoms so who knows...I am SO HOT!!! feel like I'm going to pass out waiting in a line at the store sweating to death....sorry to not be more help...Also the only time I was really sore was in Jan with the rapid growth - the rest of the time it's really been just pressure....kinda sore throat on the inside....
I don't understand the heat and cold issue. I can get up in the morning and be so hot that I think I willk suffocate and then a few hours later I am so cold I feel the need to turn the heat on for a minute. It goes from heat to air and heat to air. My poor hubby and son don;t know how to dress but they both are very kind and patient and know that I have no choice and I have to get myself comfortable. I have been so cold that I have ruined my husband;'s joy with his jeep this summer. I won't drive without the top because I am so cold and the other night at his softball game I wore a coat and the heat index was 80+. He was so embarassed.....lol
We have the same problem - it's so nice your husband and son let you do what you need to with the thermo - my husband has hypo and is cold - so I can't in good conscience set it to deep freeze when he's in the house! But whenever I can I do - I've always been hot even before my thyroid went bad - especially upon waking in the mornings - when I went on synthroid - that got better - I started to feel normal - like my internal thermostat was working right for the first time - I even got cold this winter! (we don't have much of one in Oklahoma - but still - what state are you in? - if you're comfortable saying)....that was something! But the last three or four months (since I got more nodules) I am hot again - too bad - just in time for summer - we have frequent 100 degree days here....
But, even when I'm hot, my feet are always cold - sometimes my hands too - weird....Sounds like your hubby is supportive!! That helps SO much!! My husband doesn't have nodules and really doesn't have many hypo symptoms - just the cold all the time thing - he can even lose weight!! Darn it! But he's been really supportive - sometimes I think he doesn't understand the fatigue and why I can't go backcountry hiking with him anymore - but he tries....and he knows I am trying - so we work on it together - he goes with me to some of my appts etc....
K
