(Midwest, I know you said to let go of the idea of TSH relating to symptoms, but all my reading seems to link the two, and if TSH tests are never reliable, then how can we trust this notion of High TSH=need for treatment?)
Sorry about the length of this thread, but I am still confused about this. I have been reading a lot of books about hypothyroidism, and frequently come across stories of under-diagnosis, and under-treatment. It seems to be a common problem that people are suffering from symptoms, and often have to change doctors, or beg, or insist that hypothyroidism be taken seriously as a possibility, before medication is started. It seems that good practise dictates some kind of hormone treatment when the TSH level is above normal range, and that difficulty can arise in figuring out the best course/dosage etc of medication. In my case, it was a routine blood test last April, and not a concern about any symptoms, that showed an elevated TSH 7.37 (range 0.30-5.5). My Free T4 was at 13 (range 11-22) and Anti-thyroid Peoxidase was high at 287 (<35) My doctor has never ordered a T3 test Free or Total. I did feel tired, though not the bone-tired kind of tired that people talk about (I had a VERY demanding job). I also had some foot pain. But no other symptoms. My doc started me at .88mcg of levothyroxine, last September. I felt awful on it. My muscles and joints became very achey and sore all the time, and I felt my heart racing, and had sweats, and leg cramps, and lost weight quickly. My first TSH two months later was 1.63, but because I felt so horrible, I asked my doctor to lower the dosage to 50 mcg, which he did. After two months, my last TSH was at 46.65!! Way above where it was before I even started the medication, but I feel better than I did on the higher dose (still some muscle aches). Does this make any sense to anyone??? The point is, I don't find much information about people who don't seem to feel a lot of symptoms, but have high TSH. And anyway, I seemed to suffer MORE symptoms after going on the levothyroxine. This is so confusing!!!
It has been explained to me that sometimes it takes your body some time to get used to having the correct amount of hormone. It's possible your body adapted to having too little thyroid hormone & now that you are trying to fix it, your body is having a difficult time adjusting. I know that I had NO idea I was hyperthyroid w/ Graves disease until I went to the doctor at a friends urging b/c my eyeballs were about to pop out of my head. I felt fine, great even, BUT my TSH was 0.01 & my thyroid hormones were through the roof. I felt fine, but these levels were harmful for my body. Eventually they would have taken a toll on my cardiovasular system. And besides, I think the symptoms of a thyroid imbalance creep up so slowly sometimes that we don't even notice them.
I think it would be good for you to get a Free T3 test done along w/ a Free T4 in order to give a clearer picture of your thyroids health. Thyroid imbalances are difficult to manuver through, but I assure you eventually you will find the correct balance by learning as much as you can and listening to your body.
Your doctor started you on a higher than usual dose. Are you on the generic levothyroxine? Some people have to experiment with different meds. I started on Synthroid but did horrible on it. I went to the generic (made by Mylan) and was doing well on that. The point is that you may do better on another brand of t4 or you may want to try armour. There are big differences between brands of t4. They have the same active ingredient but it's the inactive ingredients that can make all the difference in the world. The fillers and binders can affect how well the t4 is absorbed in your body. Also, if you take your meds on a full stomach, they won't be absorbed as well either.
I was horrible on synthroid and when I switched to the Mylan brand levothyroxine, I felt much better. Btw, I was dx'd hypothyroid when my TSH was 8.6. Six weeks later, it went down to 5.6. Six weeks after that, it went up to 37. And I was feeling better when it was 37 than when it was 5.6. If you have Hashi's, I think the antibodies count has a lot to do with it.
Maybe you might think of switching brands and see if that helps you.
Thanks to both of you for your replies. Much appreciated. As far as the brand goes, that's another area of confusion for me. I live in Canada, and I'm not sure if we have all the same brands or not. My original prescription said "Synthroid" on the actual prescription, but then the bottle of pills simply says "levothyroxine". After reading up on this board and elsewhere about the differences between brands, I asked my phamacist if my brand was synthroid, or a generic brand, and got an unsatisfactory answer that there aren't generic brands....blah blah blah...I left feeling confused. I will call again tomorrow and get a difinitive answer about this. I want to know what brand I'm on, and what brands are sold here in Canada. any Canadians out there who know the answer??? I'll post what I find out.
Also, I am dealing with a doctor who doesn't want to talk about dessicated thyroid or T3 supplements, so I want to find a new doc too, but it's so hard, and I have NO IDEA how to start looking...It doesn't make much sense to go blindly from one doc to another, but I know of no listings (None listed in my city on Mary Shomon's list)
Well, I just spoke with my pharmacist, who said that in Canada, the only levothyroxine available is Synthroid and Altroxin, and that I am on Synthroid. I also asked her about T3 and she said it's not prescribed here. Great!
Junji, my dog was recently diagnosed hypothyroid. I went to a compounding pharmacy about 15 minutes from my home. I told the pharmacist that I would like to start her with the generic since I don't have much money. Would you believe the pharmacist told me the same thing? He said "They don't make generic anymore." My reply was "Funny, I got generic from my pharmacy." He said "You must not have gotten yours recently because they did a recall a while back." "No. I got mine just last week." "Oh. Well let me see and I'll give you a call." I got it the very next day. What an IDIOT! Needless to say, I'm NOT going back there again. I think some of these people get kickbacks for how many scripts they write out (doctors) and fill (pharmacists) for synthroid.
If you have more questions about meds in Canada, post a new thread to Jinglbts and Bonbe. They live in Canada and have been dealing with thyroid problems and changing meds for a while.
I had similar confusion when I started this mess nearly a year ago. I had symptoms when I took med....and none when I stopped. The exact opposite of what people kept telling me. Here is what I finally settled on...and it wasn't easy to get a clear answer. Your body wasn't happy with the invasion of med...it told you that. It could be brand related, or dose related. Either way...you felt better without it.
Now...lets think of this as something other than say Asprin. Think of all those little molecules in your body. They were trying to get along with the little hormones that your thryoid made. Body had done a good job. Now...you give it something foreign.
It takes a while to consider the new foreign stuff...and decide how to use it. Perhaps you took it away before your molecules could size up the situation. Remember...your molecules had a game plan working fine...since your DNA was initially formed...so this is not an easy deal.
You gave a crutch to the thryoid gland...and you make it more useless by giving it Synthetic hormone. So now there is a bigger hole in it than there was before. So, your TSH reflects that. Its now higher as a result.
Now..then what do you do? In my opinion, you shouldn't be taking the pure t4. It works okay for some folks...but many do better with some Armour thyroid. In Canada its called "Thyroid." It has stuff in it that will not make those TERRIBLE aches for you. I had the same issue and I thought I was being ELECTROCUTED. Doc just shrugged...like it was nothing. So, I get the frustration. I stayed that way for 3 months...and just wanted to kill myself.
Other Canadians are rolling around the board and can advise you on the natural porcine extract that Pfizer? distributes up there.
You stated you felt like you were being "ELECTROCUTED"
This is a very interesting statement, as that is how I describe my current nervous system problems to the doctors. My legs and muscles ache horribly, and the nerve endings feel overstimulated. I told my current endo and primary that it feels as if I have stuck my finger in an electic outlet.
Were your nerve fibers like this, just screaming? The endo said it was anxiety, but I explained to him that is was not. That I have no racing mind or any other typical mental anxiety symptoms, rather this is a bodily anxiety. For some reason, docs can not differientate bodily anxiety from mental induced anxiety.
So, I'm wondering if I should add aurmour into the mix. One of the reasons I haven't is because I was concerned that pure T4 was already causing the nervous system problem, was afraid any addition of T3 would put me over the top...
Bosman, I also changed to Mylan. I was on another brand and felt
awful ,itched, rashes. unbearable. I researched inactive ingredients and
chose Mylan as it was missing the Calcium Bipasic phospahate. Besides it
wasnt working. The huge rash on my back left within 2 weeks. I have a listing of different thyroid meds with their inactive ingredients if anyone wants them, there is a partial listing in the achives possible #19. Juanji,Anytime you are getting a med you can ask the pharmacist to copy the inactive ingredients from the med they are giving you. Saves looking up all the companies like I did. A new generic is by sandoz and I have their
inactives as my son was just switched by his pharmacist. Hope this helps.
Suem, that's some good information to have. Thank you! I always wondered about what was in the meds or not in them that can make such a drastic difference in how one feels. My main symptoms on synthroid were numbness and tingling (in my hands mostly), lack of energy and sleepiness.
Can you please share the differences in inactive ingredients with us?
Thank you so much!
You are correct in saying that the doctors think that everything they can't explain MUST be something due to YOU attitude. Somehow you are REFUSING to get well, and are coming up with some truley ODD and fantastical symtoms.
Here's why the T4 caused this in my opinion: T4 doesn't do everything that the major companies would have you believe. THEY have conned the docs and the various medical societies into buying the notion that the VERY complicated thryoid gland, teaming with hormones full of their own intelligence can be replaced with one little pill containing only ONE hormone. Its actually a rediculous idea if you think about it.
Now...when they sell the docs on the simple diagnostic tools...you have a recipe for what happens to a lot of people. I got pain, and the docs just wanted to send me to any other doc or specialist to get rid of me. I was in agony and couldn't even sit in a comfortable way...never mind move!
The hormones in the body produced by the thryoid gland aren't even just T3 or T4....there are more. Many more...with many different functions, that effect the entire universe of your body. All molecules have needs and desires. Without just the right mix...you will be in varrying amounts of pain...or mental disability. You can't help it...and the docs just don't what to say. Its beyond what they have been taught. Its over their heads basically.
Your muscles...and the overlay that actually gives the powerhouses inside your molucules is what is missing in t4 alone. No wonder one feels electrocuted...it is nerves that aren't getting proper messages, just like the nuerotransmitters in the brain also get starved on t4 alone. So...there you sit having MS problems...and the doctor can't figure out why.
So what else is in that thyroid gland that is so special?
Many Ts and certain mineral elements that help all these critical little elegant conversions that need to take place in the traffic control of your system. The only way to get them...is with natural porcine extract. Although many think its the wrong ratio for us. The way to get around that is to supplement it with a bit of synthetic t4. Its about BALANCE. Without what is in there....MANY folks, particularly somebody who had a T-T like me will be in a world of pain, and cognitive breakdown liek I was.
Getting your hands on the right doc, the right, med and the right opportunity for labs...can be a chronically losing proposition for a patient. So...I understand the frustration. I'm caught in the same maze you are....but I'm doing better than I was.
The second I introduced some Armour into my system...I could FEEL the difference.