I had goiters that were so large j didn't have a choice but to have my thyroid completely removed. I wasn't hypo or hyper and when they biopsied it they didn't find cancer. My TT was on 1/4/16. I've been on 150 mcg of Levo since the surgery. For the first 7-10 after I felt great. But then not so great ever since. Sweating on and off, occasional joint pain, muscle aches, a few times burning muscles, tired no matter how much sleep I get, light headedness, etc. I get bouts of energy but they're short lived and I always pay the price at the end. I had to leave a family function because I could no longer stand. My knees started to buckle. If I don't get 10 hours of sleep I almost can't function that day. I can't make it through the grocery store so I can only do small shopping trips. I haven't been able to go back to work.
I can't find a doctor willing to look into this. One told me to get a sleep apnea test, then he ordered a TSH, free T3, and free T4 test by they were all in the normal range so he said he wouldn't do anything. Then I started gaining weight to the tune of 1 lb a day so he said he'd decrease the dose to 100 mcg which I said no to. Fortunately the weight gain stopped. I went to another doctor who told me TSH I as the only number that counted and it was normal so she said I was fine and just to give it more time. She couldn't believe I wasn't back at work.
I went back to the first doctor to see if he would order addition al tests specifically a Reverse T3 and they don't know what a Reverse T3 test is. My primary care doctor referred me to get another doctor but again he only cares about the TSH. I don't know what to do. Is it the Levo? Should I try something else? How do I find a doctor willing to test further, possibly prescribe Cyromel to see if that alleviates the symptoms. I suspect I'm not converting T3 correctly. I have a history of liver damage although after being on meds my last liver function test showed it was fine. Can anyone help me?!?
Can you post those blood test results Jen? A doctor that reduces a dose because the patient is putting on weight doesn't know what he is talking about. I believe there is a list of doctors who understand thyroid problems on a site called TPAUK. You may have to travel a long way to see a good doc, many of us do (I have a 400 mile round trip, and a very old car!) but you only have to go once a year for your prescription and a blood test. It might be a good idea to contact a private lab test establishment like at least just once, just to get a complete base line for your future medications. whether you stick with a doc or self medicate get that baseline of all of your blood levels. But do post the results of your tests here so that we can give opinions.
Here were my last labs:
T4, free 1.64 range 0.82-1.77
Tsh 1.220 range 0.450-4.500
T3, free 3.3 range 2.0-4.4
They're normal but I still can't function.
The problem with these tests is that they don't show how much thyroid hormone is being absorbed by your tissues. My understanding is that the TSH test shows that your pituitary gland thinks your body has enough thyroid hormones and isn't asking your thyroid to produce any more; the free T3 and free T4 show how much thyroid hormone is unbound (I.e. is in your blood and available). So yes you can have normal results in these tests and still be hypothyroid if your body isn't absorbing the thyroid hormones. (All - please correct me if I have got anything wrong! ) So then the question becomes: 'what can cause the body to not absorb thyroid hormones? ' Cortisol problems spring to mind. Or a Ferritin level below 70. A third option is that there is something else wrong entirely - many other medical conditions have similar symptoms. Do also get your vitamin B12, folate and vitamin D levels checked (as well as ferritin and iron).
My issue with all of this is that I wasn't having any issues prior to having a TT. Not a single issue. I wasn't hypo or hyper and didn't have cancer. The only reason I had it removed was because the goiters were so large they were pushing on my esophagus and trachea making it hard to swallow and breathe. So if a vitamin deficiency or other issue was the culprit I would have had issues prior to the TT. So my gut is telling me it's the Levo or my ability to convert T3, more likely my ability to convert T3. Like the level of inactive T3 is too high. And I can't find a doctor to run a reverse T3 test to check it. Or prescribe a low dose of Cytomel or switching me to Armour. Something. I've never felt like this before. I took the stairs in my house yesterday and by the time I got to the top I was winded, dizzy, and my legs felt like they were going to give out. I had to sit down. Just going up the stairs. I used to be able to walk up 2 flights in my house without issues before my TT. I knew there might be issues getting my meds right after surgery but didn't realize it would make me virtually disabled. I can't work. And here in the next 2 weeks I'm going to start losing income when my medical leave runs out if I can't get this figured out. Just so frustrating.
You might be intolerant to some of the fillers in the thyroid meducation you are taking. Are you in US. Some people there can get NDT prescribed. Try going on WP Throid aka Westthroid-P
You can get a hypoallergenic Natural Desiccated Thyroid without a prescription. I'm on a bovine NDT called ThyroGold I buy over the internet. However my reservation about switching meds is that it is early days yet, only 6 weeks, and your body still needs to adjust.
That's what the doctors keep saying. But I can't live like this. These symptoms are severe. Yes, I am in the US. I will look those things up, thank you 😊
If you do decide to switch to NDT it is essential for you start on a low dose and build up slowly. Your body needs to get used to getting T3. See tpauk for dosing instructions. I have a theory that the people who have no functioning thyroid do better on NDT because it replaces the T3 their thyroid is no longer making. I've been on ThyroGold since 23rd June 2015 and had monthly blood tests, monitored by my NHS GP. To give you an idea of dosing: I weigh 53kg, i started on 150mg for 4 days then increased it to 300mg (150mg twice a day - upon waking and then 7 hours later) for 2 weeks. Then 450mg (300mg upon waking and then 150mg 7 hours later) for 2 weeks. Then 600mg (300mg upon waking and then 300mg, 7 hours later) for 2 weeks...
Read everything on the site before embarking on this. Particularly the questions and answers and the 3 free chapters of his book that explains it all. Good luck! I hope you soon feel better.
Really excellent advice Barbara. re your last post, last paragraph, you refer to "....chapters of his book......" could you tell us the author and the name of his book?
I'm copying this thread of posts and sticking it on my fridge, you really have the details, thanks.
I'm really glad that my ramblings are of use. 
If I mention his name this post will be (understandably) moderated for advertising, so I'll give hints on how to find it. Let me know if you need me to pm you the link.
Search for ThyroGold, you'll know if you've got the right site because it'll have a picture of the husband and wife team that produce it. Their names are Tammy and John. On the left hand side is a menu and one of the items is called 'questions and answers'. Click on that and at the top of the page are links to 3 free chapters of his book.
By the way, I'm now on 750mg ThyroGold and have been since beginning of September 2015.
Thanks Barbara, I had an idea it was him but I wasn't sure others would. I am getting a bit fed up of the inability to mention books on this site. I was asked by a desperate person how to start his research and my post was moderated because I mentioned books! Of course you need to pass the titles of books around, that is the basis of any dissemination of knowledge. That is why I haven't been posting here lately.
So apparently I'm hyperthyroid but my adrenal glands are producing so much cortisol to counteract that I'm having hypo symptoms. At any rate the doctor is switching me to 100 mcg of Synthroid. So I will have to wait and see what that does.
Hi LAHs, I had missed your posts as they are always so informative. Thanks
By the way, before I hit 'reply' I always 'copy all' so if my reply gets glitched or moderated I can just repaste ir send via private message as appropriate.
Hi, I have also been taking Levo for a couple of years due to an over active thyroid, my Dr suggested stopping mine as it can cause oestoporosis using long term. I am now awaiting treatment, either radiotheraphy or an op to remove part my thyroid. I also had terrible aches and muscle pain, I wake in the mornings and have to literally roll out of bed as I cannot use my arms, my back, neck, shins ache, headaches too. I have only been off Levo for a couple of weeks and my arms feel alot better altho my back still aches. I am told that once I have my op or the treatment I will have to take thyroxine prob for life not Levo and I am also that sometimes you develop an under active thyroid (great!!), I am only petite now. I have been having blood tests every month monitoring my thyroid since I developed it and will have to carry on so in the future
Yes that is all correct. You will be on hormone replacement for the rest of your life. You will also have to take regular blood draws in the beginning while they figure out the best dosage. I've read people can gain anywhere from 20-75 lbs and have read complaint after complaint about it. I weigh myself daily and have not gained anything. It's been 2 months. I'm not petite, I'm clinically overweight so I couldn't afford to gain anything. And thankfully I haven't. But I've had all the signs that you're having and then some. I'd also start taking your temp every morning. Mine got down to 96.1. The odd thing with me is that I have mostly hypo symptoms but I'm hyper. So be careful of that. The other thing is after your surgery if you don't feel good and by not feel good I mean can't function then don't let the doctors tell you to give it time. That's what they like to do and time could make it worse. In my case I'm heart palpitations and muscle and joint aches. I can't walk up stairs or get through the grocery store. My arms get tired just holding the steering wheel to drive. So I kept pushing my doctor to run blood work, to adjust the meds. And he did. I also got a second opinion and looked into other doctors. Don't be afraid to do that too. If I had the money I'd go to a hormone replacement doctor. They're fantastic. But they don't take insurance and cost a lot of out of pocket money. All I can say is be proactive and prepared. It's been 2 months and I still haven't been able to go back to work. I'm still having issues but my doctor is working with me and that's about all I can ask for. Hang in there!
Regarding your first sentence, YOU SHOULD NOT BE TAKING LEVO FOR AN OVER ACTIVE THYROID, YOU TAKE THAT FOR AN UNDER ACTIVE THYROID!
​Before you consider removing or killing your thyroid, try carbimzole or methimazole - or some other med in that family.
Perhaps this is a stretch since I don't know your situation or your doctor but I would also look for another doctor since the one you have has made a terrible error. At least get a second oppinion with an Endocrinologist (and even they aren't very good at thyroid issues).
Good advice LAH! I only have experience with after the thyroid is removed, not before. Thank you for catching that.