Hi All,
I was wondering how many people here had negative AB, but found it was hashis through biopsy - I read it could be up to 20 %....I might be in that 20 %. Any info greatly appreciated!!
Re: How many dx hashis by biopsy while having neg AB?
Hi!
I was one of those like you. I never showed antibodies, but had one nodule that was biopsied. It showed lymphocytic thyroiditis, which the doctor said was Hashi's. Do you have any nodules?
Re: How many dx hashis by biopsy while having neg AB?
Kathy,
well I am no stranger to you, but maybe we didn't touch on this one................I do not test positive for the typical antibodies. I only have shown positive for thyroglobulin antibodies! My biopsy showed is what lymphocytic thyroiditis. You want to know something funny..................I was getting my labs drawn the other day at my pcp's office, I asked her for another copy of my biopsy report. She handed it to me and said " oh, you don't have hashi's, you have lymphocytic thyroiditis." I had to tell HER it was the same thing...........sad! My biopsy said actually it was a follicular lesion with degeneration typical of an adenoma with great lymphocytic thyroiditis. At that time I was negative for the tpo antibodies and only by chance the hospital that did the biopsy tested me for the thyroglobulin antibodies because my dr didn't know those could show up with hashis; Those are what I tested positive for. There is someone else on the board that tests for those instead too.
Re: How many dx hashis by biopsy while having neg AB?
Thanks All - I requested a biopsy the minute they found the nodule (almost two years ago now 8-26-03) and didn't get one - don't really know what I have...
Before treatment with synthroid my labs were:
Tsh 1.4 (0.3-5.1)
Total T4 10.4 (4.4-12.5)
Total T3 175 (90-200)
Thyroid peroxidase AB < 10 (<35)
ANA Non reflex to titter Anti-Nuclear AB negative (negative)
cortisol 24 (7-25)
T3 uptake % 24.1 (20.0-38.5)
cholesterol 277!
After 6 months of synthroid my cholesterol dropped to 203 - but alas it wasn't to last....
my endo doesn't believe in frees!
The frees I did have tested just before synthroid treatment by my GP was a
TSH 0.408 (0.35-5.5) FT4 1.04 (0.61-1.76) and one (probably by accident) in dec04 was TSH <0.019 (0.3-5.0) and FT4 16.0 (3.8-13.5)
My most recent tests (5-4-05) on 150 synthroid 15 cytomel were
TSH <0.1 (0.3-5.1)
Total T4 12.7 (4.4-12.5)
Total T3 225 (90-200)
Thyroid Peroxidase AB <10 (<35)
Thyroglobulin 6.7 (<55)
Thyroglobulin and AB <20 (<40)
T3 uptake % 31.0 (20-38.5)
Cholesterol 292! (<200)
Triglycerides 249 (<150)
Cortisol 19! yeah (2-25)
I was just looking back over ancient history:
1996 TSH 0.59 (0.49-5.66) Before any of my health problems (age 31)
2/22/00 TSH 1.2 (0.49-5.66) This was just when I was starting to gain my FT4 0.6 (0.6-2.1)! 60 lbs with no change in diet or exercise
6/07/02 TSH 0.71 (0.49-5.66) (by this date I couldn't go to the bathroom)
FT4 1.11 (0.6-2.1) (and had gained about 30+ lbs)
Quite a puzzle! I can't figure it out and I don't think my endo can either! Kinda looks like hashis though doesn't it with TSH all over the place - but then maybe the nodule supercedes all that (which I think started in 00-01)
Thanks again for all your support!
Kathy
Re: How many dx hashis by biopsy while having neg AB?
I cannot believe you got no biopsy. It is your body and nobody has the right to deny you to find out once and for all what is going on! I mean what if you are carrying around a cancerous nodule or one that is hyperfunctioning? Dr's!
I looked at you labs and got out mine.......they are so close it is scary! We sure seem like we are in the same boat, doesn't it?
Re: How many dx hashis by biopsy while having neg AB?
I'm glad someone else has similar labs - I really haven't posted mine before - or if I have - I forgot! (my memory is really bad lately - like worse than usual)...I think it's the stress of this big project at work that has to be done by the end of june or my salary runs out on Jan 1 !! Argh!! And I need to think clearly to do it - I sincerely don't know if I can....I've put off most of my doc appts for the month to get some work done - so I don't see my endo again til Aug - I will push for the biopsy - He keeps talking like I have hashis at every appt but I remind him my AB are neg and last time he said, "but the biopsy showed..." and I interrupted him - I never had a biopsy - so maybe now he sees the need for it?? When this project is done (or my job is lost) whichever comes first! - I have the name of another endo I might try for another opinion (while I still have my health insurance).....I am trying really to be optimistic though - I believe I can do this project - It may not be as good as the work I used to do - But hopefully it will be good enough and I am hopeful that things will get better!! Things never stay the same right! So one day at a time right now - also this is helping to cure me of perfectionism! So that's good right?! Some things just have to go - I simply can't do it all anymore....and that's ok....Thanks for being my friend - I feel a lot of comfort from our conversations!!
Best wishes,
Kathy
PS Since my memory is so bad - I hope you'll forgive me if I ask you things more than once - how old are you? I am 40 now - but my troubles started when I was 35-36....
Re: How many dx hashis by biopsy while having neg AB?
Kathy, I just turned 41. So, we are also about the same age.
I wish you the best of luck getting this project done. I am sorry you are under so much stress.
I know it is hard to try and find another dr and it is so hard to push dr;'s for things. I don't have alot of faith in my dr as far as the thyroid goes but, being that she is willing to treat based on symptoms I hate to try someone else. I am afraid if I tell her I want to see someone else for my thyroid and then I am not happy she will not be willing to treat me anymore.
Do you think that the synthroid is causing your nodules to multiply? I have read that can be the case in so many instances. That is the ONLY reason that I haven't started meds yet.
I gotta really think this one through. I think I need meds but I am afraid that with hyper symptoms and taking meds that it will put me over the edge.
What made your dr decide to start you on the meds?
Re: How many dx hashis by biopsy while having neg AB?
I think I decided to start the synthroid because there I sat weighing 60 lbs more than I used to and being a mental zombie that I was desperate - I think that it did speed up my metabolism and help me to lose the 35 lbs and I think it helped me think better - A lot better really....But the endo's plan was that it would allow the thyroid gland to rest (since we were supplying the T4 in another way) and this would lead to the shrinking of the nodule. At first it seemed to be working - I think for the first 9 months there was some improvement - I've had 5 ultrasounds in 22 months....then it took off - I don't know if it would have done it anyway or if it was my body retaliating to the synthroid - I really don't know - I've decided the nodules don't care about the synthroid but that I want to take it for some of the other symptoms of hypo. Wish I could get rid of them all - the fatigue and memory probls are terrible - but I am grateful for the improvement I've had - One of my other docs said if I had gone on like that I'd have diabetes for sure - the weight did a number on my back and feet and I still have terrible foot problems....
I don't know about doctors, since I've stuck with this same endo since dx in 8/04...but if she's willing to listen to symptoms and also your emotional concerns, I think I might stick with her a little longer.....I was worried to that my endo might not treat me if I sought another opinion, so I went to a surgeon and I'm going to an ENT and my endo doesn't have to know about it - I keep copies of all my tests and records, so I don't have to have my endo send them and if I need a referral, my GP has been good about doing that - so I haven't had to let the endo know I am looking at other options....
It's just more comfortable this way....
K
Maybe ask some of the other hashi people if the meds helped them - since I'm not sure I have hashis my case might be different....I think it did help some of them - but can't remember for sure....
Re: How many dx hashis by biopsy while having neg AB?
I actually go to a panic/anxiety specialist for those problems. Thank goodness he has been very good at treating me.
My pcp was such an excellent dr but she just got divorced and had to move her practice and it seems like she has gone to pot! She is never in her office and it took me an entire month to get my labs from her when they were back in the office in 48 hours! I too get copies of everything so I was thinking that I could get another opinion without her knowledge, but both endos in this area require a referral. I guess that leaves me stuck.
I am so anxious to get to the bottom of all of it. I know that may never happen, but it seems that with my relatives who have battled this once they got rid of the thyroid things were better. I am very interested in trying armour thyroid.
I just couldn't get over how close our lab work is. Between that and the fact we had the shrinking and reswelling at the same time, it seems like I have FINALLY found someone who knows exactly what I am dealing with.
I am curious to see if my pcp will offer a repeat ultra sound. I think she needs to at the year mark. Since they feel so much smaller I would like to know if they really are, ya know?
Re: How many dx hashis by biopsy while having neg AB?
Hi Karen,
I'm glad we've found each other too! - I think all the people who got rid of their thyroids and are doing well are not on the support boards if you know what I mean!! Some are - and have been encouarging about thyroidectomy...seems the only real cure - but I just can't right now -
But I am not going to go on like this for 5-10 years! No way - I deserve a better quality of life than this - have other problems too - like my stomach and feet and there's just a few too many that they make me feel to old to be 40!
My PCP didn't have a problem giving me a referral to two docs when I told him I wanted to get two opinions - this way I didn't have to go through the endo at all...hope your PCP gets better since you like her a lot - She probably will with a little time....
He did my last ultrasound during the shrinkage - and indeed they were smaller - I think we know better than they do what our necks feel like huh! Of course this confirmed for him that the synthroid had finally worked! Well who knows - maybe it did - but why is it swelling up again then?? Too many mysteries!
Re: How many dx hashis by biopsy while having neg AB?
Kathy,
I had extreme foot problems right before I was diagnosed. I had plantar fascitis <sp>, Oh, was it awful. I could hardly walk at all I was in sooo much pain and living on cortisone for that. That all cleared up when this swelling started about a year and a half ago. Too weird.
Yeah, I sure know what my neck means better than any dr. I cannot believe when my pcp tells me there is no way I have thyroid symptoms when I am going to start! I mean does she think it is all in my head??? hahaha
Re: How many dx hashis by biopsy while having neg AB?
Guess what!!? I have plantar fasciitis!! It's awful - just got a cort shot last week in the right heel for it - it started after I gained all my weight...and hasn't gotten better.....I think I've even heard on the boards some assoc with it and thyroid....yours went away?? How??
K
Re: How many dx hashis by biopsy while having neg AB?
Kathy,
Oh, can you believe something else we have in common. It is like we are living in same health nightmare!
That plantar faciitis was so awful. I had been in a cast for 6 months with a severe ankle injury and it was not as painful as the pf!
I had the pf for about 18 months. I really don't know how it went away but I started in with this swelling back then and lost 60 pounds. I did these stretches about a dozen times a day..........try them out.........before ever getting up, especially in the morning...........hold your leg straight and flex your toes towards your knee as far as you can. Do it at least 5 times in a row and hold it for 10 seconds. Also, imagine writing all the letters of the alphabet with your foot. ( hope that makes sense) it works out all the tendons and such. I also did the taping method. Have you seen that? Let me know if not and I will tell you about it. It does work to help relieve some of the pain. I don't know if it was the weight loss, the stretches or what, but, I can say for sure that right before all this swelling started I had this bout of extreme gerd, plantar faciitis, terrible psoriasis and horrible hemmoroids. It was like EVERYTHING in my body got inflammed!
Let me know if any of that works and if not I can tell you about the taping.
Re: How many dx hashis by biopsy while having neg AB?
Karen - that's too weird!! I was a ballet dancer all my life (just on the side in later years) but had to quit when I gained the 60 lbs because my feet couldn't support all that weight - I hoped when i lost it - it would go away - but it hasn't and I know skinny people who have it - I've been to PT twice for it - do the stretches - have orthotics and see the foot doc a lot. When this all started I got hemmoroids too!! and yeast infections! neither of which I had ever had in my life! Fortunately those have cleared up for good! It was like every system in my body was breaking down - no one has any idea how extreme thyroid disease is! And my itchy scalp is driving me crazy!!! I think they did the taping at PT for me for awhile - I'm getting ready to go back for another round after I finish this project....It's not going well today! Do you work outside the home? How old is your son?
K
Re: How many dx hashis by biopsy while having neg AB?
Kathy,
Are ya ready for this one..............I too had the yeast infections! Geez, this is not all a coincidence!! NO way! In fact, I still have them once in a while. I had never had one my entire life til this. I was even getting them in my belly button of all places!
That is so awesome you were a ballet dancer. I love to watch them! I used to walk 5 miles a day/7days a week. My dr tried to tell me the pf was from that, but I know better.
You have it right on the money, our whole system is breaking down. I bet you do have a good case of hashi's like I do, it is just too similar.
I do not work outside the home, but, I homeschool my son who is 12 and that is pretty much a full time job.
How about you? I know what you said about work, do you have children?
We went out to eat tonight and I have felt so bloated all day I could hardly eat. The last 2 weeks I have been so hungry I have felt shakey all day. It is so weird how it all changes in a matter of hours sometimes!
I wanted to let you know from our other thread............I too drank a ton of pepsi, ate all the wrong food, munched out on doritos and loved fried chicken. I decided to do all this healthy changing thinking that I would feel so much better and that all of it couldn't be my thyroid, but guess what, it was. Now, I did have my cholesterol go down 71 points and my triglycerides went down to 67 after making all these changes, but the over all way I "feel" has really gotten worse! Very depressing! I only keep it up because my lipid profile was so good and overall I know it has to be better for me.
Re: How many dx hashis by biopsy while having neg AB?
my foot doc said it was from pronation - I think dancing kept the tendons all stretched out and when I had to stop they drew up and started this pf thing - the coincidences are amazing! I haven't had any yeast problems since I've been on synthroid - I don't seem to have the swings you do between hyper and hypo except for mixed symptoms and the mysterious shrinking eposide - but then I'm on thy meds too...dont' know if that helps regulate the swings with hashis or not since I don't know if I have it!
That's nice you get to spend so much time with your son - especially at the tender age of 12!
I don't have any children - just a husband and two cats...I am a research scientist and I study the atmosphere....I mentor graduate students and do my research. Most of the time I really like my job - it's just been hard to teach students when I can't remember and frustrating to try to do my research when I can't think critically...
It's encouraging that someone who ate like me can change! My lipids are out of control - so there's hope for me - chol like 292 and tryg like 257....ooh....actually just getting on synthroid dropped it from 277 to 203 but as I got more nodules it went back up again....
Re: How many dx hashis by biopsy while having neg AB?
Oh I guess I should say I have 5 kids! We have a cat, dog, iguana, bunny and then the real child! haha They are all babies.
Your job sounds incredibly interesting. I don't know how you do it though with the thinking. I have noticed this year while trying to do school how I would have to go back and figure some things out that I would normally know.
I know that all these similar things have to be related. How can 2 people have that many coincidences? Isn't it weird. I had my labs drawn almost a month ago and the lab decided I didn't nead a repeat free t4 so they didn't do that or the thyroglobulin either. I called my dr's office and demanded they call the lab and tell them yes I do need those tests! Can you imagine the lab decided what I need and don't? I was so fuious I could barely speak. Every time I think about starting meds I will start feeling normal and so then I think well, I will wait a while. Then everything acts up and I make another appt with the dr and then by the time the appt comes around I am back to feeling ok or hyper in which case I am afraid to take them.
I'll tell ya, there was nothing like seeing my lipid profile come back so good. That kept me on the straight and narrow with the eating. I love to eat and I love to eat junk. I could eat candy and chips all day long and wash them all down with soda. Isn't that terrible? Oh well, I have changed that. I try to be very rigid now because I am afraid of putting those 60 pounds back on with the hashi's.
Re: How many dx hashis by biopsy while having neg AB?
Hi Karen -
Yes - that's what I did - fast food - candy - and soda - Then I gained 60 lbs in a year! I haven't been myself since - now I can barely eat anything in order to keep from gaining - I did lose 35 lbs over the last 22 months - but it seems to have plateaued for good now...but I am still so much better off than I was - so I got your 60 lbs huh?! Did you lose them from changing your eating and walking or from the hyper? I can understand being on the fence about meds - I had to do something - I couldnt' work at all at the time they found the nodule - I really literally was a zombie....but I can't make up my mind about getting the thyroid out - that I am always going back and forth about - I am going to postpone deciding until I get my project done - or try - I can't help thinking about it a lot - it's changed my life so completely.....I do work M-F and I work a lot evenings and weekends - My boss has been understanding and lets me work at home some days - so that helps because the fatigue is so bad....but it's not good for my job security even so - I miss out on meetings with colleagues and things like that - but I am hopeful - that one day - things will be better again!! I wish that for you too - This all hit me like a brick and I am still adjusting - it's really nice to know that there is someone who has been through almost the same path and really understands! Thanks for all your correspondence!
Take care and I hope you feel good tomorrow!
Kathy
Re: How many dx hashis by biopsy while having neg AB?
Good morning Kathy,
Well, I feel another strange day. I have swelling in the area ( except my normal enlargement) but I feel pain there. I am so sick of it.
I told you I suffer from severe tmj and I have really wondered if it has anything to do with this. I have had the tmj problems for over 14 years, I know it didn't cause it but it has gotten so much worse and my dentist did tell me that autoimmune diseases tend to cause extreme inflammation in a certain group of muscles and joints. I am also wondering if having enlargement in that area could be throwing my jaw off. Since you have had tmj you know the importance of a perfect bite. Just a guess on my part, but it sure seems like it would make sense. I mean it has gotten so bad over the last 2 years he had to put me on a pain management regimen and I am having to wear a bite splint 24/7 some days and always one to sleep in.
I hope your boss continues to uderstand but I am sure you feel nervous about it. It would be so hard to explain to anyone how you "feel" when you have this.
I lost some of the weight back when I changed my eating habits but the majority of it just went away over about 9 months. I mean I know I changed things, but that is a lot of weight to just disappear without really trying to hard, ya know? I mean I would have spells where I would eat and eat and get on the scale and have lost 2 or 3 pounds. Now though I am starting to feel so bloated and swollen and I do NOT want that 60 pounds back! That is funny how we both had the 60 pound mark.
I have really enjoyed your correspondence as well. I have searched and searched for soemone who has this same type of symptoms as I and who can relate to everything that is going on.
There are so many wonderful people on this board and anytime I have a new symptom or get blood work or even get an opinion from a dr I come here first to post it and get someone's advice before I take my own dr;s word because so many time the dr;s have led me down the wrong path.
I got the best info on tmj from the tmj board and a lady there encouraged me to fire my dentist and get a new one who could make a real splint. I did just that and although I still have tmj, my symptoms are 100% better than before. I was almost bedridden with it and the dizziness from it.
I have foudn tremendous help with the anxiety/panic on the panic board and now I have found someone who can relate to my thyroid problems as well. It is VERY comforting to have people in your life that can relate to you when you are ill or suffering in some way.
Thanks again for taking the time to answer all my questions...........I am hoping to get my labs back today Free t4 and thyroglobulin antibody test. Hopefully the lab didn't change the instructions again on the orders.
I will check back today with you........hope you are finding yourself feeling good today.
Some things just have to go - I simply can't do it all anymore....and that's ok....Thanks for being my friend - I feel a lot of comfort from our conversations!!
