I've been a Ginny pig on levothyroxin and it's just not helping! I was diagnosed with Hashimoto's disease last year and I've never felt right since I've started the synthetic hormone. They started me on 100mcg and then, jumped me up to 150! I was being overdosed and the dr would not listen to me! My symptoms were text book! Then, I was told to alternate 150 and 137. That didn't help at all! Then, I was told to just take 137, still too high! Now, I'm currently on 125 and I still feel terrible! Is anyone else experiencing this?!?
Ask your doctor for a referal to a specialist. I have talked to a person who has been on levothyroxine for several years and she told me it took ages before you begin to feel better. I take my levothyroxine at night last thing before bed now and I feel a lot better doing it that way. Your blood tests should be taken regularly .I felt awful for ages, disorientated,foggy and lifeless but I am a lot better now. I started on 50mcg then 100mcgs . Good Luck.
I was being seen by an endocrinologist. Unfortunately, I lost my insurance. I've been struggling with this for almost two years! I'm only 29 years old and I feel like hell! I just want to be normal again. I've apparently had this disease for over a decade. I've spent my whole 20's feeling horrible. Even lost a pregnancy from it. It's making me crazy!
Blood tests mean very little, you need to get your doctor to acknowledge symptoms not numbers!
I have never been seen by an endocrinologist you would think they would be the very best to advise you,are you English as it would be free on referal to see one. I know what you mean about feeling normal again, I felt exactly the same, I can only say since taking the drug at night I do feel more like my old self,why dont you give it a try. I had been going through a bad time looking after my dad and then my husband was diagnosed with kidney failure and wether it was that, that brought it to light as I was very low when I went to the doctors, panics, feeling faint etc heart racing etc. Everyday it seems to get better for me. There are thousands on Levothyroxine and have been for years so I suppose it in the end must improve our quality of life. I have to think that way as I do not know of an alternative solution or a natural one.
TSH means little or nothing as it does not tell you what is working at cell level. I agree you should ask for a referral to an endocrinologist but I'm afraid there are very few that don't toe the TSH line!!
Unfortunately, I'm an American. Healthcare is complicated to say the least. There are natural alternatives. I think I'm going to try that. I don't know if you're like me, meaning your thyroid is completely dead, but I've been battling this long enough. I nearly died last year. I would fall asleep standing and driving. My right arm became paralyzed. I had just had a stillborn. I was welcoming death. Then, I figured out what was wrong with me. I didn't have insurance,
But I was fortunate enough to know a doctor. We did labs and confirmed what I already knew. I also discovered that, that was how my daughter had become mentally challenged. I'm so tired. 
Hi Sarah, sorry to hear you are suffering. It does sound like you are being over medicated but could you post the results of you bloods? that will give us a good indication. Usually doses are increments of 25 mcg i.e. 50 75 100 etc... just wondering how on earth you split it to 137 ?? Could you take less youself and give GP feedback? you bloods should be taken frequent whilst monitoring medication.
Regards.
They should have a thyroid monitor like they do or diabetes. It's all part of the endocrine system. Just makes since and then, we could get they right amount of hormone by injection when we need it. Have you experienced thyroid hormone overdose? It's pure hell!
I've already seen one. Still in a bad way...I'm just trying to get some other suggestions. TSH is important. Mine was 89.4 before Levothyroxine. That's pretty dangerous.
Once you have to take over 100mcg, it's in increments of 112, 125,137,150,175,200 and 300. I have no idea why. I know that there are people trying the pig thyroid hormone. I'm considering it. Levothyroxine has been a nightmare!
Hi again, are you in England ? because NDT isn't really available here. The incrments to the medication is news to me. ??
No, I'm American.
I have an aunt that takes it. I'm going to find out what the benefits are and I will share. 
Right, that explains the difference in increments of thyroxine. NDT isn't readily available here in England.
Right, we don't readily have NDT here in England. That explains the difference in medication increments.
Hello Sarah, Starting thyroxine and trying to get to the right dose whilst the thyroid gland is still in place and working to some degree can be a tricky business. I can only tell you what I know from my own experience about this sort of thing. Half of my thyroid gland was removed 28 years ago due to nodules. I was given 100mcg of thyroxine (Oroxine) and told that 'at that dose' the remaining thyroid gland would 'go to sleep forever' and the tablet would be all I needed for the rest of my life. That is what happened and I am ok on this dose. Now .. I would like to mention 'body weight'. At the time I weighed 60kg and 100mcg was the dose for a 60kg female of 40 years of age. Based on the guidelines 1.6mcg of Oroxine per kilo of bodyweight = 96mcg - so I was given the 100mcg tablet. Some doctors seem to dispute this way of dosing by weight but it worked for me. If you work out this calculation for yourself you may find out what dose you should likely be on in the end.
I remember when I started on the Oroxine there was a lot going on in my life, three kids and moving house at around that time. I recall the summer seeming extremely hot .. now when I think back to that time I may have actually been a little over medicated for a few months but that settled down (possibly because the remainder thyroid lobe had still been working to some degree.) It takes about 9 weeks after a dose change to feel results and your tsh will be changing for 6 months or more 'I know this by experience'. So testing the tsh every few weeks will not be a reliable way to change your dose. Only 'you' can determine if the dose must go up or down 'not your doctor' .. you will be muddling about forever if you leave the dosing up to the medical profession.
If you calculate a dose by the above mentioned system and stay on that dose for several weeks .. you can then determine if you need more or less thyroxine by observing your symptoms - keep a record. The thyroxine is a powerful hormone and even a very small amount can make a big difference in your body. Even 1mcg per day makes a difference over an eight week period for me. When you get close to the right dose you can also cut an extra tablet into halves or quarters and take it either daily or once weekly if you need more.
I have a chart that shows how to take intermediate doses of thyroxine. If you would like it .. I will probably have to send you the link in a private message as I don't think they like us posting links here.
Hope some of this is helpful to you .. it can be a wilderness for new thyroid patients.
Rosalie
Thanks for the info! I have Hashimoto's and it has totally destroyed my thyroid. It doesn't work at all. I'm American so, we don't really use the metric system. We measure our weight in pounds. Lol anyway, my endocrinologist said something about weight and how many mcg's you should be on. I agree about TSH. I just know that I'm tired of feeling this way. I'm too young to feel this old...
I feel your pain!! The yoyo cycle is a trial for sure. You mentioned you are having symptoms of overmedication. For me they are irritability, weight loss, heart issues ranging from palpatations to full on SVT episodes. Once I was given a full time dose of 125mcg to lower my TSH and it dropped to 0.03. Scary low and I had a couple heart episodes which is nothing to fool around with. My only point is that you should be checking your TSH regularly. After my overmedication scare I recognize how quickly something can wrong in this scenario. I used to check my TSH every 6-8 months apart but have decided I'm going to go in every two monthls now for a while. I seem to have a very small window for my TSH to be in (around 0.8-1.8) where I feel really good and I am willing to invest the time and resources to hit that target. Sadly I've heard terrible things about home testing kits or else I would be the first to jump in that line. It takes a while to figure out your ideal dosage but I promise once you hit it you will feel SO much better! I am literally a different person now than I was when I was getting this all sorted out. Trouble is that your dosage needs will fluctuate with time and thus the regular monitoring.