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Hashimoto's Toxicosis and going hypo and hyper
This is kind of a survey/question to those of you diagnosed hypothyroid Hashimotos but who feel or actually are cycling into a hyper (not hypo) state. Do you seem to have symptoms of hyper like red in the face, hi b.p., shakiness, depression, hot all the time not hot flashes, hot tempered, double vision or poor vision etc etc but yet you feel run down, tired, fuzzy mentally, slow gastro processes so you go to the doctor and he/she says you are right in target range for tsh below 3.0 or thereabouts and great free t4 free t3 levels and all else looks good so maybe they raise your thyroid med dose thinking you're still a little hypo (not hyper) or have you lower dose in case you are actually hyper and for a short while you feel better or feel worse right away so now you don't know if you're up or down ? Yes, that is a run on sentence but hopefully I'm clear - here is my theory - maybe you have gone so hyper your body is shutting down or slowing down to protect itself or it's just breaking down altogether - Has anyone had this experience and if so what do you do about it or what does your doctor do or say to help you? And if our thyroid gland worked normally would pituitary and other supporting systems output consistently same amounts ? I know this is a good question for Dr. Lupo as he actually believes there is a phenomena as Hashitoxicosis unlike my past 3 endos. I'm curious what you folks think about this and what your experiences have been.
Hi Everyone,
To hoopie65: It is so amazing...all of the things you described, I have had them over the last year. Like many of us have said, it seems to come and go....a few bad weeks and then a break for a few weeks. That is what I think ultimately makes people think they are crazy...it's like you keep waiting for the next "thing" or "symptom" to start. It is terrible!
To Terri: Thanks Terri, for your insight and replies. It sounds like you have done a lot of research and trial and error.... I hope to eventually feel better and back to "myself" sometime! This post has been a great source of support for me and really helps me feel like I am not alone...thanks to all.
An update: I had my blood ckecked at my PCP actually just yesterday. Was hoping to get in earlier, but the office didn;t call me back and then they were closed, etc, etc. I would have liked to have my levels checked about 3 weeks ago--when I first posted here and was feeling horrible. But, that didin;t happen, Plus, it seems like sometimes the levels don't give an accurate picture anyway--either they are normal and you feel horrible, or if they are out of whack, you might miss it as the symptoms may lag behind. Anyway.....
My TSH was 1.63, T4 was 1.1, and antibodies down to 256 (from > 1000 in June 07.) They didn't check T3--I had to barter for them to even check the antibody level!!!! So, on paper...everything is, of course, "fine." My doc told me to stay on 50mcg per day.
Last week I felt really pretty good...the muscle weakness and brain fog had gone. I was still having a funny feeling in my left eye occasionally, constipated, and a few muscle twitches (but much less than a few weeks prior.) Otherwise, though...pretty good.
Hah!! Just started yesterday having some GI fun...sort of had this wierd metallic / acidy taste in my mouth yesterday and most of the day today. No particular "heartburn", but I am burping more than usual???? not too bad, but just another one of those "fun", transient symptoms (I hope!) I also did have some gurgling (like my stomach was revved up), and a really soft BM (lovely!)-- HYPER??? Again, a TSH of 1.63 might be too low for me--that's was I think. Considering I felt great with a TSH of 5.5 (prior to starting any meds or even being diagnosed, but GP at that time jsut sort of gave me the heads up, but I felt completely fine and didn't go on meds).....hhhmmmm.
A few last thoughts/questions:
Anyone else have a wierd taste in their mouth or bouts of acid reflux? I have never had any GI symptoms to speak of, so maybe it was just something I ate-- I don;t know. It is really very mild.d But, since all these things keep popping up, I just assume that they may be related to my Hashi's / thyroid.
I have an appt. with an Endo that was ref. to me by 2 co-workers who really like him--one has Graves, the other, Hashi's. The appoint. is not until July, however!! But, i am going to wait....what else can I do? I am going to bring all of my labs and questions with me...so I hope he will have some insight. But, in the meantime, if I should need or want to have my "levels" checked again....what is the standard, or should I say, what is the standard that I should ask for. TSH/T4/T3/antibodies?? All??? Just curious what anyone else has routinely checked. B/C I have an HMO (lovely managed care), it's like pulling teeth to get anything done. The Endo that i am seeing is not even in network, and I am just paying out of pocket for the consultation--and if I need to change ins., etc, from there--I will.
Does anyone know or has anyone experienced any changes in regard to the antibody level decreasing? I am not sure if the fact that the antibody level has dropped significantly would make me feel any different..is it supposed to make you feel better, worse, or maybe doesn't matter at all??
Also, I haven't had time to research "adrenal" involvement, but have seen that idea thrown into the mix here and there. I wish I could just be "happy" with the fact that I have thyroid disease (Hashi's), and attribute my symptoms to that. But, because I am so up and down, I get worried that there is something else wrong, even though Hashi's seems to be the likely culprit for everything I experience....it's frustrating. Everytime I get a new symptom, my mind starts racing to figure out what else it could be! UUGGHHH!
Thanks for listening! Good luck to all...take care!!
To hoopie65: It is so amazing...all of the things you described, I have had them over the last year. Like many of us have said, it seems to come and go....a few bad weeks and then a break for a few weeks. That is what I think ultimately makes people think they are crazy...it's like you keep waiting for the next "thing" or "symptom" to start. It is terrible!
To Terri: Thanks Terri, for your insight and replies. It sounds like you have done a lot of research and trial and error.... I hope to eventually feel better and back to "myself" sometime! This post has been a great source of support for me and really helps me feel like I am not alone...thanks to all.
An update: I had my blood ckecked at my PCP actually just yesterday. Was hoping to get in earlier, but the office didn;t call me back and then they were closed, etc, etc. I would have liked to have my levels checked about 3 weeks ago--when I first posted here and was feeling horrible. But, that didin;t happen, Plus, it seems like sometimes the levels don't give an accurate picture anyway--either they are normal and you feel horrible, or if they are out of whack, you might miss it as the symptoms may lag behind. Anyway.....
My TSH was 1.63, T4 was 1.1, and antibodies down to 256 (from > 1000 in June 07.) They didn't check T3--I had to barter for them to even check the antibody level!!!! So, on paper...everything is, of course, "fine." My doc told me to stay on 50mcg per day.
Last week I felt really pretty good...the muscle weakness and brain fog had gone. I was still having a funny feeling in my left eye occasionally, constipated, and a few muscle twitches (but much less than a few weeks prior.) Otherwise, though...pretty good.
Hah!! Just started yesterday having some GI fun...sort of had this wierd metallic / acidy taste in my mouth yesterday and most of the day today. No particular "heartburn", but I am burping more than usual???? not too bad, but just another one of those "fun", transient symptoms (I hope!) I also did have some gurgling (like my stomach was revved up), and a really soft BM (lovely!)-- HYPER??? Again, a TSH of 1.63 might be too low for me--that's was I think. Considering I felt great with a TSH of 5.5 (prior to starting any meds or even being diagnosed, but GP at that time jsut sort of gave me the heads up, but I felt completely fine and didn't go on meds).....hhhmmmm.
A few last thoughts/questions:
Anyone else have a wierd taste in their mouth or bouts of acid reflux? I have never had any GI symptoms to speak of, so maybe it was just something I ate-- I don;t know. It is really very mild.d But, since all these things keep popping up, I just assume that they may be related to my Hashi's / thyroid.
I have an appt. with an Endo that was ref. to me by 2 co-workers who really like him--one has Graves, the other, Hashi's. The appoint. is not until July, however!! But, i am going to wait....what else can I do? I am going to bring all of my labs and questions with me...so I hope he will have some insight. But, in the meantime, if I should need or want to have my "levels" checked again....what is the standard, or should I say, what is the standard that I should ask for. TSH/T4/T3/antibodies?? All??? Just curious what anyone else has routinely checked. B/C I have an HMO (lovely managed care), it's like pulling teeth to get anything done. The Endo that i am seeing is not even in network, and I am just paying out of pocket for the consultation--and if I need to change ins., etc, from there--I will.
Does anyone know or has anyone experienced any changes in regard to the antibody level decreasing? I am not sure if the fact that the antibody level has dropped significantly would make me feel any different..is it supposed to make you feel better, worse, or maybe doesn't matter at all??
Also, I haven't had time to research "adrenal" involvement, but have seen that idea thrown into the mix here and there. I wish I could just be "happy" with the fact that I have thyroid disease (Hashi's), and attribute my symptoms to that. But, because I am so up and down, I get worried that there is something else wrong, even though Hashi's seems to be the likely culprit for everything I experience....it's frustrating. Everytime I get a new symptom, my mind starts racing to figure out what else it could be! UUGGHHH!
Thanks for listening! Good luck to all...take care!!
I was diagnosed with Hashimoto's about 4 months ago, but previously had been treated for Hypothyroidism beginning a year prior (TSH about 7.5 at that time). When I was diagnosed with Hashimoto's, my TSH was normal, however, my antibodies were way up. The endo stopped the Levothyroxine I had been taking to see if my other symptoms (anxiety, muscle tension) would go away with stopping the meds. 4 months later the symptoms are still there. I was previously put on antidepressants for the anxiety, which I just now in the process of getting off of. My symptoms of being anxious with the muscle tension go away later in the day, and I am perfectly fine from about 3pm on through the rest of the day.
Has anyone else experienced this phenomenon of side effects that consistently occur daily but only for a portion of the day, and then go away? Thanks for your input and I wish you all the best.
Has anyone else experienced this phenomenon of side effects that consistently occur daily but only for a portion of the day, and then go away? Thanks for your input and I wish you all the best.
Yes, I too feel like symptoms are at certain times of the day. Usually I am fine in the early morning, at home when I am getting ready for work, etc. Then around 9:30am things start acting up. I feel like my worst time of day is between 10-4pm. I also usually feel better in the evenings as well. Hang in there!
Thats interesting about antibodies going down - wouldn't that be a good thing? Something I've known about but didn't realize I had - vitamin D deficiency very common with this and my doc tested me and I was so was under the range so after precscription mega dose I was up to par & then continued on maximum dose according to health recommendations then tested 6 mos. later - very very bottom of range - so now I'm taking just over maximum to see if this helps - this is not a water soluble vitamin so have to be careful but already my nails, hair, skin better - just a minor thing but I'm such a health nut as well being vitamin deficient would be an unusual thing for me - be sure to have your doctor check vitamin D levels especially if you live north of Atlanta, Ga area as this seems to be the point at which too little sunshine is an issue w/ vit D levels during winter etc - hope you both are feeling better - T.
I feel bad jumping into this forum, but after reading all your comments and realizing the amount of experience and knowledge, I was hoping someone could help me figure this out. I am a 28 year old male and have seen numerous doctors with mixed diagnosis. This all started for me about 5 years ago...waking up one morning complaining my eyes felt off, dizziness and my left ear hurt.
My results and ranges are below. I cannot gain weight no matter what I eat, I'm not tired, but have insomnia, breathless or shortness of breath, anxiety, depression, my eyes hurt, nervousness, my body feels like it's on turbo speed half the time, cannot tolerate the heat, but I shake like a bobblehead in the cold, hot flashes, shakiness all the time, headaches and almost constant diarhea. I have a tough time waking in the morning and am shaking when I do. My worst problem, is my eyelids feel as though they weigh 50 lbs. each, my right eye is sometimes noticeable smaller than my left and my eyes feel as though they are off (like unbalanced). I am being treated for hypo, but definately feel hyper! Any suggestions, comments or ideas on what it is or where to go from here? I have never had a scan of my pituitary, thyroid, adrenals or thymus gland (which have been suggested).
Results: Ranges:
10/12/05:
TSH: 1.20 0.40 - 5.5 MU/L
2/21/06:
Free T4: 0.91 0.59 - 1.17 ng/dL
TSH: 0.94 0.35 - 4.82 uIU/mL
T-4, Total: 6.4 4.5 - 12.0 MCG/DL
T-3 Uptake: 34.6 25.0 - 35.0% Uptake
8/15/06:
TSH: 1.11 .34 - 4.82 uIU/mL
10/12/06:
TSH: 1.20 0.40 - 5.5 MU/L
6/21/07:
T-3, Free: 377 230 - 420 PG/DL
T3, Reverse: 0.19 0.11 - 0.32 ng/mL
Free T4: 0.73 0.71 - 1.85 NG/DL
TSH: 1.39 0.50 - 5.00 uIU/ML
7/17/07:
Here are the saliva test results;
fTSH 57 Normal
fT4 0.25 Normal Normal: 0.17-0.42 ng/dl
fT3 0.27 Borderline Low 0.21-0.27
TPO Positive
E2 (Estradiol) 9 Male (20-49 yrs): 1-3 pg/ml, Male (50-85 yrs): 1-5 pg/ml
P1 (Progesterone) 30 Male (adult): 5-95 pg/ml
TTF (Free Testosterone) 34 Male (20-30 yrs): 60-110 pg/ml
Cortisol:
7:00-8:00 a.m. 6 Depressed 13-24 nM
11:00-Noon 4 Depressed 5-10 nM
4:00-5:00 p.m. 3 Normal 3-8 nM
11:00-Midnight 5 Elevated 1-4 nM
Cortisol Burden 18 23-42
DHEA 4 Normal 3-10 ng/ml
My morning Cortisol blood test was 19.3 (Range: 4-22 MCG/DL).
Antibodies test was negative.
8/7/07:
TSH: 1.80 0.50 - 5.00 uIU/mL
9/12/07:
Free T4: 0.75 0.71 - 1.85 NG/DL
TSH: 1.27 0.50 - 5.00 uIU/ML
1/19/08:
Free T4: 0.66 0.71 - 1.85 NG/DL
TSH: 0.17 0.50 - 5.00 uIU/mL
1/30/08:
TSH: 0.95 Range: 0.50 - 5.00 uIU/mL
Estradiol, Serum <32
Estradiol Reference Ranges:
Male: <=54
It goes on to say no pediatric reference range established.
T-3 Uptake: 40.31 High Range: 25.0 - 35.0% Uptake
T-4, Total: 5.7 Range: 4.5 - 12.0 MCG/DL
Free Thyroxine Index: 2.30 Range: 1.12 - 4.20
T-3, Total: 93 Range 60 - 181 NG/DL
Testosterone, Total: 393 Range: 241 - 827 NG/DL
My results and ranges are below. I cannot gain weight no matter what I eat, I'm not tired, but have insomnia, breathless or shortness of breath, anxiety, depression, my eyes hurt, nervousness, my body feels like it's on turbo speed half the time, cannot tolerate the heat, but I shake like a bobblehead in the cold, hot flashes, shakiness all the time, headaches and almost constant diarhea. I have a tough time waking in the morning and am shaking when I do. My worst problem, is my eyelids feel as though they weigh 50 lbs. each, my right eye is sometimes noticeable smaller than my left and my eyes feel as though they are off (like unbalanced). I am being treated for hypo, but definately feel hyper! Any suggestions, comments or ideas on what it is or where to go from here? I have never had a scan of my pituitary, thyroid, adrenals or thymus gland (which have been suggested).
Results: Ranges:
10/12/05:
TSH: 1.20 0.40 - 5.5 MU/L
2/21/06:
Free T4: 0.91 0.59 - 1.17 ng/dL
TSH: 0.94 0.35 - 4.82 uIU/mL
T-4, Total: 6.4 4.5 - 12.0 MCG/DL
T-3 Uptake: 34.6 25.0 - 35.0% Uptake
8/15/06:
TSH: 1.11 .34 - 4.82 uIU/mL
10/12/06:
TSH: 1.20 0.40 - 5.5 MU/L
6/21/07:
T-3, Free: 377 230 - 420 PG/DL
T3, Reverse: 0.19 0.11 - 0.32 ng/mL
Free T4: 0.73 0.71 - 1.85 NG/DL
TSH: 1.39 0.50 - 5.00 uIU/ML
7/17/07:
Here are the saliva test results;
fTSH 57 Normal
fT4 0.25 Normal Normal: 0.17-0.42 ng/dl
fT3 0.27 Borderline Low 0.21-0.27
TPO Positive
E2 (Estradiol) 9 Male (20-49 yrs): 1-3 pg/ml, Male (50-85 yrs): 1-5 pg/ml
P1 (Progesterone) 30 Male (adult): 5-95 pg/ml
TTF (Free Testosterone) 34 Male (20-30 yrs): 60-110 pg/ml
Cortisol:
7:00-8:00 a.m. 6 Depressed 13-24 nM
11:00-Noon 4 Depressed 5-10 nM
4:00-5:00 p.m. 3 Normal 3-8 nM
11:00-Midnight 5 Elevated 1-4 nM
Cortisol Burden 18 23-42
DHEA 4 Normal 3-10 ng/ml
My morning Cortisol blood test was 19.3 (Range: 4-22 MCG/DL).
Antibodies test was negative.
8/7/07:
TSH: 1.80 0.50 - 5.00 uIU/mL
9/12/07:
Free T4: 0.75 0.71 - 1.85 NG/DL
TSH: 1.27 0.50 - 5.00 uIU/ML
1/19/08:
Free T4: 0.66 0.71 - 1.85 NG/DL
TSH: 0.17 0.50 - 5.00 uIU/mL
1/30/08:
TSH: 0.95 Range: 0.50 - 5.00 uIU/mL
Estradiol, Serum <32
Estradiol Reference Ranges:
Male: <=54
It goes on to say no pediatric reference range established.
T-3 Uptake: 40.31 High Range: 25.0 - 35.0% Uptake
T-4, Total: 5.7 Range: 4.5 - 12.0 MCG/DL
Free Thyroxine Index: 2.30 Range: 1.12 - 4.20
T-3, Total: 93 Range 60 - 181 NG/DL
Testosterone, Total: 393 Range: 241 - 827 NG/DL
Dear Friend-
You sound hyper for sure - get a good Endocrinologist if you don't already have one - your tsh is so low - which would explain the shakiness etc - I hope you have insurance - please get to a good Endo in your town/city - also I would send this same post to the doctors forum on this website to see what he says - good luck to you & keep us posted what you find out - Terri
You sound hyper for sure - get a good Endocrinologist if you don't already have one - your tsh is so low - which would explain the shakiness etc - I hope you have insurance - please get to a good Endo in your town/city - also I would send this same post to the doctors forum on this website to see what he says - good luck to you & keep us posted what you find out - Terri
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