Hello everyone!! After ready about soo many of peoples problems and after years of me suffering i finally made an attempt to join a board to talk about this issue.
Want to keep a long story short...i have had Subacute thyroiditis since 2004. I am going through my 4th episode. I'm hypo now for 3 months. My episodes last between 8-14 months. I have not known how my body functions in years. I lose about 20 lbs each time this takes place and gain a few back over time. My doctor just keeps me doing blood work each time i feel something is wrong. I have been on toprol every time i was hyper and I tried anti anxiety medication but couldn't really stand how slow my mental thinking was so i went off of it. only 1 time he had me on synthroid but was off it within 2 months cause i went hyper again.
The only tests he has ever performed were t-3,t-4 tsh levels.
I have had an uptake and scan 2 times so far with nothing showing in every test.
I haven't had any other tests and i am hoping somebody here can recommend certain tests to rule out anything else that be causing this.
I do tend to have high liver count but it's always high when my thyroid is fast and drops to normal afterwards.
I see tests for anti-thyroid levels on here, but i have never been tested for it. I also have never been tested for calcium levels either. I don't know what keeps causing this up and down to occur. Anything else?
The following user gives a hug of support to bjjranger: enjoylife1927 (07-22-2012)
I have hyperthyroidism and I have been told nothing else can be done. so I understand what you are going threw, its definately a roller coaster. I used to only deal with the sweats now neck pain, soar throat, and I have lost way to much weight.
And that's why I'm wondering why you've been suffering for 8 years.
Since so very many doctors don't know how to interpret thyroid labs, I'd be curious to see some lab history. Do you have any to share?
We'd need to know the reference ranges for your FreeT4 and FreeT3 results since your results can only be properly interpreted within the context of your lab's ranges (different labs use different ranges).
While I'm not happy to know you've been suffering, sometimes learning how to interpret labs and rallying for better care is "all" that's needed. (Don't get me wrong - it takes awhile to achieve wellness....I'd just like to make sure it's not your doctor who is delaying your return to wellness)
(1) Did you have the painless (silent) or painful thyroiditis? Or, did it come from pregnancy?
I'm a male so no..not from pregnancy.
It's painful when it's hyper, but when i'm hypo the pain is more and the right side of my neck swells larger and my front should to chest bone sticks out much further then my left side. It also starts to get feel like i have a stiff neck all the time, i get back shoulder and chest pains.
Originally Posted by Spencer1
(2) Have you ever tested positive for antibodies, whether they be TPO or AG?
I have never been sent to get tested for anti bodies
Originally Posted by Spencer1
(3) Do you have any family history of thyroid issues?
Yea my mother has it, my aunt grandma etc etc
Originally Posted by Spencer1
(4) Are you not completely miserable? I am sure this gets better over time, but I cannot imagine going through the thyroiditis four times!? Hasn't this affected your life in an awful way?
I am miserable! I haven't known what it's like to be normal since 2002. It's hard to keep a job or sometimes even function. Every time i explain this condition people ask if im making this stuff up. Every episode is a roller coaster. Once i am better i feel great confident and i can play sports, go biking and not eat 5 times a day cause i'm dropping weight so fast. First time i had soo much anxiety, now i know the symptoms and i can take the beating during the hyper phase. The hypo gets to me, more sad and lack of thinking kills me because i'm an engineer and problem solving is a daily activity!
Originally Posted by Spencer1
(5) What is your TSH, Ft3, Ft4 and their ranges when you are optimal? I guess, when you are not in the midst of the thyroiditis you do not take any thyroid hormone, is that correct?
The first time i was hyper, i become hypo as mentioned by my doctor. Once i became hypo after 6 months he put me on synthroid. After 3-4 months on synthroid i became hyper again...and had to come off it.
(1) May I ask, how bad were your TSH numbers? How awful (high) did they get?
(2) Do you know your thyroid numbers and ranges (TSH, Ft3, Ft4) when you are feeling amazing?
I was diagnosed 08/01/2010 - pretty much two years ago - and I am STILL on the couch. THe only time I was off the couch was when I was going hypo and I was able to walk up to four hours a day. I am on no medication now. Again, I am still on the couch and I am terrified about possibly not being able to ever get off the couch.
My endo tells me my levels are fine now, but I do not know what to do.
(3) How long did it take for you to feel normal the first time you got this?
Here are my latest labs - off medicine - in case you are curious. This has really ruined my life lately - and I hope not forever.
It would be to your benefit to take a good, hard look at your bloodwork and not just accept your doctor's declaration of your thyroid status.
All too many doctors don't know how to properly interpret thyroid labs and they are the ones that keep us sick.
Some doctors look only at pituitary hormone TSH and declare the patient either hyper or hypo and are wrong.
Thyroid status is always confirmed by looking at the actual thyroid hormone levels: FreeT4 and FreeT3.
I'm especially curious to know what your labs looked like when your doctor told you that you went hyper on Synthroid.
You are legally entitled to copies of your labs. Please post some history along with whatever meds you might have been taking at the time. You'll need to post the reference ranges for each result since your results can only be properly interpreted within the context of your lab's ranges (different labs use different ranges).
I think you came here for help.....this is the best way we can help you.
As of 9 months ago i got married and bought a home, i have yet to unpack everything so it took a bit of time to find these. I will keep updating this page as the more i find. The newest records i must of misplaced since i take them with me when i visit doctors. I take them with me because other then my endo, i have been misdiagnosed several times by different doctors because they are not endo's and never heard of this condition.
Before I get into the nitty-gritty, please accept my most heartfelt congratulations on your marriage and your new home!!!
It's time for you to be enjoying all of this stuff so, I'm glad you were able to find some records.
The thing that will be most telling is what meds (if any) your doctor had you taking at the time of the labs....and the doses.
Also, that TSI result back in 2004 could be telling us something. You may know that TSI is one type of Graves' antibody - the one that can cause hyperthyroidism.
"Normal" on a lab reports refers to a level below the level that can cause hyperthyroidism - in the case of your lab, "normal" is <125. True "normal" (as in a healthy person) will be TSI < 2.
The fact that you have measurable TSI could mean that you also have another type of Graves' antibody that can either negate the effects of TSI and make the patient euthyroid (normal thyroid function) or it can override the effects of TSI and make the patient hypo.
Also, the presence of measurable TSI can cause hyper symptoms and possibly hyper labs in some people.
I hope you're able to fill in the blanks with your meds.....that might be all you need to figure out whether or not your care has been appropriate.
Perfect example is the present - are you on any meds right now? Your labs indicate that you should be taking some thyroid hormone replacement.
In fact, if the labs you posted from 2010 forward are typical of the results you've had throughout that period of time, you should have been taking replacement all along (replacement being Synthroid, etc.)
Filling in the blanks will help us narrow things down, for sure.
Please know that some of the thyroid blood tests your doctors ran are outdated and basically useless. (T3 uptake, Total T4, Total T3)
Only to save you some typing, the most accurate tests are the FT4 and FT3 (TSH can be helpful).
If you don't have FT4 and/or FT3 results to post for a given lab date, we can look at your Total T4 or Total T3 results - those are nowhere near as accurate since they not only measure the T4 and T3 thyroid hormone levels of active hormone but, also hormone that is bound to proteins and not usable by the body.
However, seeing those levels in conjunction with your TSH level *and* your meds/doses will tell us just what your doctor is looking at when trying to evaluate your thyroid status.
I'm sorry to tell you but, the misdiagnoses you had previously doesn't mean your endo knows what he/she is doing, either. Yes, endos *should* know how to treat thyroid disease but, many seemed to have been sleeping during thyroid class and even more don't seem like they've kept up with things.
That TSI result alone told me a LOT.....it should have told the doctor something as well but, it doesn't sound like it did.
sammy, no medication was taken during these tests listed above. i was on synthroid in 2005 12mg but went off it after 2 months because i became hyper being on them.
It's clear to me that your care has been mismanaged since 2010 and I'm not sure about the past.
I can tell you that 12mcg Synthroid is unlikely to cause a person to become hyper....seeing your labs after you started it would be telling.
In fact, if you are able to share your experiences as they corresponded to your labs, it would help figure out just what has been going on.
I do find that TSI result quite intriguing since TSI is a Graves' antibody and, according to your lab, a level >125 would cause hyperthyroidism.
Some people will develop mild Graves' with TSI levels such as yours and I do wonder if that is the case for you. If you could clarify the "other episode" during 2005-2007, that would be helpful.
Sometimes, having measurable TSI such as you have will cause periods of hyper symptoms when those TSI antibodies erratically stimulate the thyroid to produce hormone.
Have you also been dealing with hyper symptoms at all during these past two years?
If those TSI antibodies are problematic, there's another treatment protocol that could help but, I'd like you to clarify any symptoms you've been dealing with before going into those details.
Being able to confirm your actual experiences with symptoms as they relate to labs will help to narrow down whether or not those TSI antibodies have caused a typical mild Graves' experience or if something else is going on.
In February i started to feel hyper, so i contacted my doctor and got an appointment in april.. When i visted the office by then my hands were shaking tremendously and my heart rate was at 110 at rest. I was sweating and starving! He looked at me and issued me a hospital visit, and blood work every months for the next 3 months till i see him again. I never went to the hospital because on april 23 i was laid off. I continued doing blood work and went on toprol. I continued on toprol and went off it after 1 month cause it seemed finally the hyper part had subsided. Well i was right, the blood work came back low and my heart rate is at 65b/m now and i gained 3 lbs since june. Insurance activated in july so I visited him the other day and he tore into me acting if i didn't care or keep in the loop with what i am doing and why i am doing it. Since i lost my job i got laid off, i had no health insurance so i couldn't go perform the thyroid scan and uptake (have done it 2 times in my life). So he wants me to give blood today or tomorrow when i have time and again in 3 months and see him then in case i am still low he is gonna put me on medication.
His theory is the thyroid is slowly dying and these episodes are sporadic and should subside leaving the thyroid to function at reduce rate. Each time and episode takes place a part of my thyroid has failed and the enlargement of my neck is a goiter over working itself causing it to get larger. While it is larger it suddenly feels it needs to shrink and go hyper...thats what confusing me. Seriously i have studied this matter for years and i still don't why these episodes keep occurring.
What he keeps telling me is - He is waiting for it to stay low so he can treat me.
I feel going on synthroid would only increase my thyroid levels making me hyper.
From reading your post i should still be continuing on it, yet when i started at 12mg i myself went off it after my blood work cause i just never slept and i had hear palpitations. When i finally got the call i was pleased that it just wasn't anxiety causing those issues.
Thanks for posting all that! Man, I still cannot believe you went through this FOUR times!?! This is a complete nightmare.
What are your levels when you are feeling "great"?
How long did it take for you to feel great after the first thyroiditis?
Do you not need to take any medicine when you are between the thyroiditis flare ups?
I do not know how you were able to keep a full-time job all these years - you are a soldier for putting up with this.
Thanks spencer1, yea nightmare is about right in my book .
I don't know where my levels are when i feel great. They typically don't last long enough.
After the first episode, I would say 1.5 years. Not good enough to function like i used too before i had these issues. Kinda left a mark on me, i was hospitalized cause my heart rate at rest was at 135 b/m. Toprol literally saved my life and i am blessed i took it!
Thanks for the encouragement! I guess i never looked at me being a solider, just someone with bad luck i assume. Umm...jobs take a toll on me so i found ways to work from home and office. It's kinda worked out, until an episode hits and then i get let go . I get no benefits from the state, i tried. So now i just do what i can when i'm finally somewhat normal for typically 1 year.
Seriously i have studied this matter for years and i still don't why these episodes keep occurring.
Those TSI antibodies are making me wonder if you are dealing with Hashitoxicosis which I will explain as soon as you clarify something I've been asking you about.
Originally Posted by bjjranger
I feel going on synthroid would only increase my thyroid levels making me hyper. From reading your post i should still be continuing on it, yet when i started at 12mg i myself went off it after my blood work cause i just never slept and i had hear palpitations. When i finally got the call i was pleased that it just wasn't anxiety causing those issues.
As I mentioned earlier, seeing your labs after starting Synthroid will be most telling. What your FreeT4 and FreeT3 levels were doing at the time will tell all.
You see, when people are hypo and start meds (especially a "non-dose" such as you were started on), their hypothyroidism can actually worsen - both with symptoms and with labs.
Palps can be either hyper or hypo.
If you could describe your sleep issues that would help clarify the situation. Were you unable to fall asleep or did you wake during the night (possibly multiple times) and then unable to fall back asleep? (this could be accompanied by anxiety or not).
As soon as I saw those TSI results along with your history, this is what I was thinking. I didn't want to suggest it without clarifying a few things. The story you linked is similar to others I've read of people with Hashitoxicosis. So sorry it sounds like your story.
I will tell you this much, radioactive ablation of the thyroid is NOT the way to go.
The RAI treatment itself causes a flood of thyroid hormones to be released. This causes a hyperthyroid condition - you already know what that feels like.
It also causes a flood of antibodies to be released. Well, antibodies are what got you sick in the first place.
Even though the nuclear medicine people try to calculate a RAI dose high enough to destroy the thyroid quickly, thyroid hormone is still thrown off as the thyroid dies - you know what that means.
More antibodies are produced as this happens so I'm sure you can figure things out.
For some people, the thyroid dies off as quickly as three months. For others it's much longer. Some people have had to have multiple treatments - especially those with dense thyroids. I'm even aware of others opting for as many as 3 treatments and eventually needing surgery.
We're talking about a lot of needless suffering.
Another downfall of increased antibody production is the increased chances of developing TED (thyroid eye disease). Since the antibodies no longer have the thyroid to attack, their other "favorite spots" are the eyes....and the skin in front of the shins, causing pretibial myexdema.
Throw in the fact that a large study showed an increased risk of cancer and cardiac mortality in post-RAI patients should be enough to sway most people away from the treatment except those with thyroid cancer.
Surgery is an option but, you would obviously be dealing with the risks and after-effects of surgery - including the need for thyroid hormone replacement for the rest of your life.
Block and Replace Therapy is the appropriate treatment for those wanting to try meds.
Basically, the patient takes a small dose of anti-thyroid drug (usually 5mg Tapazole/methimazole or 50mg PTU) along with whatever dose of thyroid hormone replacement is necessary to prevent hypothyroidism.
ATD's have immunosuppressive effects - they can lower antibody levels and that is why someone with Hashitoxicosis would take them.
Eventually, the TSI will lower and no longer affect the patient but, he/she would most likely be hypothyroid for the rest of his/her life and need to take some thyroid hormone replacement.
Without a doubt, it looks like you should see another doctor.
in 2006 i started to experince visual disturbances, causing me to have blurry vision for the first time. I started having static take place and it seem like things were like a screen that lost it's channel. My nerologist doing blood work on me for a few months found my thyroid went hyper during that peroid of time in 2006. So i was sent over to my endo and by then i was hypo.
Also i have started the last year and a half developing excema and as of recently of 6 months vilitgo. Unfortunatly it's on my face now and on my right hand. Cortizone is being used everyday but immune suppressants are being talked about next time i meet with my dermotologist.
I'm torn on what comes next I have been fighting for far too long and i feel i will be fighting even longer.
I'm so lost for words now, that i really don't know or what to do next.