When I say your thyroid is "dead", I simply mean that there is no more healthy tissue, so it no longer produces any hormones. This is what Hashimoto's does; the antibodies attack and destroy thyroid tissue.
No, you wouldn't be any better off without your thyroid. If it no longer produces hormones, it's just "there", doing nothing and isn't really affecting you anymore. Once the thyroid stops producing hormones, you are completely dependent on the replacement medication and for many/most of us TSH can not be used as the standard for dosing. My TSH always runs at < 0.01 and if my doctor dosed by that, he would take away all my medication and I'd be very ill. I, once, had a doctor who did that and I really thought he was going to kill me.
You must go by symptoms and the FT3 and FT4. TSH, naturally, fluctuates, so trying to dose by that is like shooting a moving target.
Hi Linda it doesn't sound crazy. Trying to understand this disease can be confusing. Please post your labs. This is needed information to help decide what could be causing this situation. The pros here will help you to figure this out. God bless you!
Thank you for commenting. I really appreciate everybody's input over the years. It has been a great source of strength and information that I wouldn't have known. The doctors usually rush you through so fast. My endo now isn't perfect but at least she spends time with me and listens.
My pre-going off the medicine test results in August were Free T4 1.11 (0.82-1.77) Tsh 2.380 (0.450-4.5) T3 113 (71-180). This was somewhat acceptable to me. As I said they don't ever get me stabile. It depends on how much my thyroid or nodules are producing that day (my understanding, could be wrong). After going off the tirosent for 6 weeks my test results were Free T4 0.7 (.08 - 1.8) tsh 12.02 (0.40-4.50) no T3 test done. I at that time was having extreme anxiety and knew before she told me I had to go back on the meds. I feel better, the anxiety is gone but then the dizzyness and pressure in the head started. After 5 days and nights of it, my sister prayed for me and it lifted. I feel so much better. I donot feel right, I still have other battles that I am hoping will get better as my tsh comes down. I believe I said that the ear doctor said she felt this was stemming from my thyroid, that is why I wrote the question to find out is anybody else had this and this long. What do you think? Thanks Linda
It's not unusual for symptoms to worsen or for new symptoms to surface, when starting on medication, which you basically are, since you were off them for 6 weeks.
Although your levels prior to going off the med were "in range", they were very low in the range, indicating that you might still have been a bit hypo, at that time. Of course, now, you can see where you are.
Even if your thyroid wasn't completely killed off by the RAI, most likely, it's "dead" now, if you have had Hashimoto's for quite a few years, and I believe you have. The antibodies gradually render the thyroid useless, so it produces nothing, and we become totally dependent on the replacement medication. Judging from your FT4 level, I'd say that's what happened to you.
You should always try to get your doctor to do the Free T3 test (not just T3, which indicates Total T3, but the actual Free T3 test). Free T3 is the hormone that's actually used by the individual cells, while FT4 is a "storage hormone". Total T4 and Total T3 are considered obsolete and of little value. That said, your T3 is on the low end of the range, which indicates that your FT3, will also be very low.
It's very possible that your symptoms are all stemming from the lack of thyroid hormones, but you should still get checked out for that bump on the head, as you may have had a concussion.
Thanks Barb for your comment. My endo said that my thyroid was still producing and that was just recently. She said I am an unusual case. She specializes in Thyroid unlike a lot of endos that specialize in diabetes. You think I should have been higher in my numbers before this started. She has upped my dose of Tirosent from 50 mg to 50 everyday and 100 on Sunday. I believe she did this because my tsh was going higher. I get so frustrated to try to understand what is happening to me and would like to just be normal. I also have mind battles that I think I shouldn't have from things in my past. I was thinking that I had Post traumatic Stress Syndrome, but I am thinking that this also might be stemming from my out of wack thyroid. I have asked the psychiatrist and she just said hmmm, could be. It seems that things I should be able to let go of just keep coming up no matter what. I have gotten much counsel over the years and am working hard on letting things go but it still happens. I know there is a light at the end of the tunnel but sometimes it seem afar off. It is becoming apparent to me that a lot of the stuff that happens to me is because of the mess of my thyroid. I wonder sometimes if I didn't have it if it would be better. Thanks again for commenting. I really take it in and it helps me.
I am waiting for the results of the CT that I had. I should hear something on Mon. or Tues. I will let you know. Linda
Although you were only off of your thyroid medication for six weeks, it may take longer than six weeks on your new medication for your hypothyroidism symptoms to disappear.
I recently had vertigo as a (probable) symptom of hypothyroidism. I was first diagnosed in 2001, and for eleven years I stayed on the same dose of Synthroid. Earlier this year I developed symptoms of HYPERthyroidism, and my endocrinologist decreased my dose. The symptoms disappeared.
Last Sunday I had a few scary bouts with vertigo, which were followed by a severe migraine. After the neurologist and cardiologist gave me the okay, my internist examined me and drew a blood panel. I'm back in the HYPOthyroid range, and my endocrinologist has increased by Synthroid dose.
I wasn't TOO surprised, because lately I've been gaining weight and couldn't figure out why, especially since I don't feel tired at all. I guess the weight gain was the very first symptom, and from reading some posts about hypothyroidism and dizziness, the vertigo was probably the second symptom. I've been mildly dizzy all week.
I went back to my old dose of Synthroid yesterday, so we'll see if it keeps the vertigo at bay. I expect it will take a few weeks to really notice a difference.
I find this amazing that all these symptoms could stem from the thyroid. The ear doctor did tell me that people that get migraines can get vertigo also. I don't get headaches at all, not since I was 30 years old. I don't know why. I am on my old dose of synthroid - tirosent now. I am looking forward to feeling better. I remember when they radiated my thyroid, the endo told me, by the way he said, all the ways you have been feeling will go away now and you will feel better. Well, I'm still waiting. At least I can function and that is good.
What makes your doctor believe your thyroid is still making hormones? Not all thyroid doctors are "good" thyroid doctors, and the fact that she's diagnosing and dosing based on TSH, tells me she's not really that good.
You've had Hashimoto's for a number of years and the thyroid can't hold out against the antibodies indefinitely.
Linda, You were one of the first people that I saw post on this site about the head issues. You have reported off and on back to 2007 (i think) that you had some issues. Maybe Barb is right that your thyroid has now degenerated even further and reached an all new threshold. Didnt you have ear ringing? is that still there?
I don't remember ever having ringing in my ears. My husband has that problem but I don't believe I ever had. Barb, I will ask my endo what is causing her to think my thyroid is still alive. She did mention something but I can't remember. That is why she said I was an unusual case. She has check my T3 but she also has said she can't go by my symptoms and she does go by the tsh. She is much better than my old endo that did the radiation. He was the one that told me all my symptoms would go away. What would that mean if my thyroid was dead. I know I am not taking a large dose of synthroid but she said I can't tolerate any more. I asked her to increase the dose as my tsh was going up (that was before I stopped the synthroid). It did help to keep it down. I find this hard to keep a handle on it. I am very busy with my job taking care of others and it overwhelms me to have problems taking care of myself. It is also scary to try to analyze this when it is so complicated and if you can't trust the doctor to tell you the truth. I am not a good researcher. I look things up but to try to fool around with doctors and my dosage on my own I can't do. I have to try to work with the doctors. I do have another doctor in Southern Md. near my daughter that I have seen on occasion. He is a holistic M.D. He hasn't treated me for the thyroid but has for other issues that I have (probably because of the thyroid). Again I appreciate all your input and it does promote my thinking so I can ask questions. You don't know what to ask. I will call and ask about the (dead) thyroid. Would I be better off without it? Thanks Linda
I have been not feeling good for over 30 years. I didn't know it was my thyroid at the beginning. I only found out about 5 years ago that my problems stemmed from my thyroid. It is hard for me to believe that all the problems that I have are from the thyroid. I do believe it and that does help. How do you know what dosage you should be on. This is scary to me to try to increase my dosage. Is that what I should ask my endo to do. She has increased it a little by adding the extra 50 mg 1 day a week. If I can tolerate more hormone would that show that my thyroid is dead. How can you be sure it is. I haven't called my endo yet but I am going to. I just need to know what and how to ask her and have to be in the right frame of mind to talk with her. will let you know the answers I get from her. Right now I am going to call the ear doctor and find out the results of my CT. Thanks again for your input all of you!
Any Dr who ONLY uses TSH and is DISMISSING your symptoms and outright told you she can't go by your symptoms is a 100% unequivocal HUGE red flag that tells me you should find another Dr ASAP!
TSH is as Barb pointed out almost worthless and IS worthless in some people as she so plainly states.
A "good" thyroid Dr will use symptoms PRIMARILY with blood work as a back up. And of any blood work forget TSH and concentrate on "free" T4 and "free" T3 tests. These measure the actual two thyroid hormones you body actually uses. TSH is just a hormone that switches your thyroid gland on or off ( up or down). THS is highly variable and really only a screening tool
Like I said, any Dr that uses only TSH I would run from as fast as possible. As your experience suggests, they can't stabilize you. That is because they are using a horrible test (TSH) to try to do it. Plenty of people here can attest to how using TSH is almost a guarantee that the Dr will keep you feeling ill. And this has been your experience.
Start your search for a new Dr.
You may like your current Dr. But if they are not getting you the results you seek then it is time to move on!
Boy are you right on. I just finished talking to my endo and told her how bad I was feeling. She said that my symptoms were more like too much hormone, not enough. I had asked her if we could increase the tirosent. She said that she thought not all my problems were thyroid and that as I pressed her she said she thought some of them were psychiatric. I told her that I was told that the mental stuff came from the thyroid. She said she went by the tsh and when it was in normal range if I still didn't feel good then it was other problems. I don't agree with that. I think the thyroid causes the mental stuff. I mean by that the inability to shut off my thoughts at times and of course what happened to me 2 week ago when I went off the meds completely, the anxiety. It really shook me at first but now I am determined to find a doctor that will look at my symptoms and talk to me. She got offended, of course she said she wasn't but told me that if I wanted to go somewhere else ok. I told her I was only trying to understand what was going on and telling her how I felt and asking what to do. Well it tells me she has brought me as far as she can and time to move on. I seem to agree with the people on this forum that tsh isn't where it the way to tell if when it is in the what they call normal range you still don't feel right. I just talked to my husband and asked him what he thought about the mental stuff and he said that he has never thought that it was a mental problem with me. I have other symptoms right now, fingernails splitting, leg cramps, I have had them all of my adult life, general feeling bad physically. She really doesn't listen. I didn't realize it until the last time I saw her she said she could only go by the tsh and not my symptoms. Now where do I find that next doctor that will be able to help me get further along. I live in Baltimore, Maryland. Anybody know of a doctor in the Washington-Baltimore area or even further, please let me know.
Your endo's refusal to go by anything but TSH is going to keep you ill and there's no reason for that.
Don't worry about offending her; she isn't worth it, if she won't even listen to you.
It's not really the "thyroid" that causes the mental issues, because your thyroid isn't doing anything anymore. It's having a lack of thyroid hormones that causes it. All of your current symptoms (splitting nails, leg cramps, generally feeling bad) are those of under medication. While most doctors will put anxiety and sleep problems in the hyper category, I can, personally, attest to the fact that they can also be associated with hypo - there's where the FT3/FT4 come in.
The first thing I'd suggest is that you get tested for the Free T3 and Free T4. Since your endo won't do it, and you don't have another on tap, I'd suggest that you utilize an online service called healthcheckusa. You can order the tests (TSH, FT3 and FT4) for approximately $85. Once you order the tests, they will send you a lab order and tell you which lab in your area to go to for the blood draw. After the blood draw, they will e-mail you the results in approximately 2 days. There are others that may do just as well; this is the one I used, myself, and had very good luck with it.
In the meantime, you can be looking for another doctor. Keep in mind that it doesn't have to be an endo. Any doctor who understands thyroid issues can treat your hypothyroidism. Just make sure they are willing to test the Free T3 and Free T4, along with the TSH *every* time you are tested. You should also find out if they are willing to prescribe a medication containing T3, which I'm guessing you might need. You can often "interview" doctors over the phone; most often you will have to talk to the nurse, but s/he can tell you what tests the doctor normally runs and if s/he is willing to prescribe T3 medication. Any doctor who won't do FT3/FT4 or prescribe T3 med, is not worth wasting time/money on.
I checked our list of member recommended doctors and the only one we have in Baltimore is the one you recommended; maybe we need to take her off our list? I'm not familiar with your geography, but we do have one in Pikesville; if that would be helpful I can PM you the contact info.
I am so upset by this. I am trying not to be. Maybe this is a good thing. Pikesville would be great. I am in Middle River which is about maybe 25 miles or so. I thought my doctor was good. I think I posted my last blood work done 11/28/12 T4 free 0.7 (0.8-1.8) tsh 12.02 (0.40-4.50) previous 10/24/12 5 days after i went off the tirosent the results were T3 total 91 (76-181, T4 free 0.9 (0.8-1.8) Thyroid Peroxidase AB 44 (Less than 35) thyroglobulin AB <20 (less than 20) and some other tests. It looks to me like my T3 total was on the low side and the T4 free. She wants me to have another test in 2 weeks. That will make 4 weeks inbetween the tests. Maybe my symptoms aren't caused by the thyroid but I really think they are. She will not go by my symptoms unless they are typical. I haven't asked her about T3 medication. She doesn't seem to be as open as I thought she was. I didn't like that as soon as I said something to her she right away said if I wanted to continue with her I could make an appointment. She also told me to hang in there. I will stay with her until I can find a new doctor. I am interested in the doctor in Pikesville. That is not too far. Is this an endo? Do you know much about her or him. I thank the Lord that I have you and the forum to help me. This is quite discouraging. I think the way I feel right now is because of going off the tirosent for 4 weeks and my tsh going up. It is confusing to me to remember when it goes up that means my thyroid isn't working and when it goes down it is working. She said now it looks like my thyroid isn't working. This is very confusing to me. Please let me know the doctor's name. How do you PM? What does that mean. Thank you, thank you.
Another way that may be possible to locate a POTENTIAL "good" thyroid Dr is to call some local pharmacy's int he area. Find out which Drs they fill perscriptions from that prescribe T3 medication either sythetic Cytomel or Armour or other natural dissected thyroid medication.
Dr's who prescribe a medication with T3 in it are USUALLY but not necessarily more open to thyroid and chances are they are better than your average Dr in relation to Thyroid.
Secondly. A private message is like an e-mail specifically to a person on the list. That is you can correspond with someone directly without having it posted on a thread for all the world to see.
To Private Message (PM) you can hover your cursor over the blue name (alias) of the person who you want to PM. A box will come up. One of the choices within the box in the right hand column is "send a message". You will then be taken to another page that looks like e-mail. you can write a message and the email will be sent directly to that person.
When they respond, after you log in, you can go to your "inbox" You may also get notified of a reply to your private message has come in your "regular" e-mail that you used when you registered for this forum.
It really is a nice service especially if you want to discuss private matters that you really don't want the world knowing or that you start to go a bit off topic and don't want to clutter a forum thread up with.
Hope this helps.
As for TSH use keeping people ill. This forum list is FULL of person after person where this is the case. I can give you a website that links to many edical research papers which support the fact that TSH is crap. And furthermore that people who need medication typically need to have their FT4 and FT3 levels well up higher into the ranges than a person who has no thyroid problems. This further supports the whole notion of the target of FT4 in the Middle of the range (50%) and FT3 in the UPPER 1/3 of the range (66.7%).
It is pretty clear you current Dr is going to get you no where and you really do need to find another Dr.
Don't worry. Many of us have had to do this. My wife is on I think Dr #5 and others here I think have had to go thru as many as 10 or 12 to finally find a Dr that will help them.
ALL your symptoms you have ARE consistent with low thyroid. Dr's are quick to prescribe an antidepressant but loathe to give a small increase in thyroid medication. It is insane!
I sent you a PM with information. The side bar on your home page should tell you, that I sent you a message. Your "Inbox" should indicate that you have a message - a number in ( ). Click on Inbox and it will come up, then click on the title of the message to open it.. . When you open it, there will be a blank space below my message, in which you can type, if you have any questions. No one else will see the information we pass between us.