Thank you so much for your message, much appreciated but has now given me more cause for concern and confused me even more regarding care of thyroid patients. It was the specialist Endo himself who said he was referring me back to my local medical centre for them to arrange the 4/6 weekly blood tests, after seeing him for 5 or 6 appointments and after he had initiated the Block and Replace therapy. Why would he do this if it isn't the correct protocol? Also, reading many of the posts on here, it would appear that many patients are also having blood tests carried out by their local medical centres (GP's) after their appointments with their specialist have ceased. Also, many patients seem to be self-medicating on this NDT, vitamin supplements etc. (by the way I don't think I'd like to risk self-medication with regard to any thyroxine medication but I have started taking Vitamin B12 supplements). I think the thing I am most angry about is my GP stopping both Carbimazole and Thyroxine suddenly and it having the affect it did on me AND at the time of doing so, she dismissed symptoms I had concerns about. I have also since learned that Carbimazole should be "weaned" and not simply stopped altogether, in fact it states this on the leaflet enclosed with the Carbimazole medication !
I agree that sudden stopping or discontinuation of medication is not a good idea and in fact is unhealthy and would cause a lot of problems. I was always weaned by lowering meds 2.5 mg at a time. My Endocrinologist decided the medication dose and I decided the supplement dose based on medical research articles I read or visits with a naturopath or directions on the supplement bottle. Most supplements I took, I asked my GP to test my levels for before I started so I wasn't doing this in the dark because my levels showed I was deficient in them. Most hyperactive paitents lose a lot of vitamins, minerals and amino acids from their bodies when they are running hyper, that's why they need to be replaced.. Doctors are not trained in the use of supplements so they cannot approve or disapprove of taking it but a person needs to use some common sense, i.e. checking for deficiencies. Hyper patients are particularly deficient in carnitine, vitamin D and magnesium. Those with eye disease are also deficient in selenium. Also many docs are stopping patient's meds when their TSH, Free T3 and Free T4 tests normalize. This is called being euthryoid. However, if they stop meds when they are euthryoid but their antibodies have not normalized, they will go in and out of remission. You need both normalization of antibodies and normal thyroid results before you discontinue your medication. Staying on a low dose of meds after your values normalize, helps to lower antibodies and achieve true remission. There have been some patients doing the Add back protocol who have been in remission 10 years or longer.
Unexplained weight loss, fast heart rate, anxiety, easily get hot or feel the heat at inappropriate temperature. Eventually, you noticed that your hands tremble. You also mimic somebody with an ADD/ADHD. You also struggling to fall asleep. However, not everyone has an exact sign/symptom.
The blood work can show it all. It's hard to fake it. Lol.
Hello I've been diagnosed about 5 months ago with subclinical hyperthyroidism...i have all the kind of symptoms my primary Dr put me on Beta blockers and Xanax..and then send me to see an endo
My Endo put me on Methimazole but u had such a bad reaction to it..so she stop it and said all she want to do is watch it for now but i can't live like this..so what should i do? Should i seek a 2nd opinion? PLEASE HELP!
My thyroid has started correcting itself with just better blockers and Valium to calm me when I have my bad days! Everyone is different. I would say get a second opinion but if a medication is making you worse or sick I would highly recommend not taking it. However thyroid issues makes you feel like death mostly all the time. I've spoken to that many people and this is an illness that is never treated or found at the right time. I hope you feel better soon. Someone above should know a little more then me. I've given up on trying to fix mine as I don't want surgery and the meds make me super sick. I'm just living my life as best I can.
Any other questions feel free to ask but this page has so many answers also.
What dose of Methimazole were you on? Generally more side effects onm higher doses. There was a research article I read about the benefit of hyperthyroid patients taking 3,000 mg a day of Regular L-Carnitine. As well, hyperthyroid patients are deficient in vitamin D and Magnesium. Ask your doc if you can get these levels tested (Carnitine, vitamin D and magnesium) and start supplementing with these ingredients. You might also want to add a low dose of Methimazole like 2.5 mg a day which shouldn't produce side effects. There are also naturopathic methods that treat hyperthyroidism.
Try taking 2.5 mg a day (half of a 5 mg pill) and the L-Carnitine. Carnitine is an amino acid that is naturally present in the body but gets lost from muscles in hyperthyroid patients through urination. Also patients who have Hashimoto's thyroiditis (an autoimmune disease) regulate their thyroid better when they use L-Carnitine alone. If they take Methimazole, they bounce from hyper to hypo. Ask your doc to check your antibodies for Hashimoto's but even if you don't have an autoimmune disease, if you are hyperthyroid, this will help - 3,000 mg of L-Carnitine, at least 1,000 IU of vitamin D and 200 mg of Magnesium daily. I also take Omega 3 to lower inflammation.
I don't know where you are at with your levels. My FT3 and FT4 were at the upper normal level once I was on 10 mg of Methimazole but my TSH remained at less than 0.001. When I started the regular L-Carnitine, I felt better but I wanted that TSH to rise so initially I added the Acetyl and my TSH immediately rose into the normal range. I felt better initially but when it rose higher than 0.70, especially up to 2.7, I got palpitations and my Free T3 and T4 fell right to the bottom of the range. It took a lot of adjustments of my meds and the supplements to keep everything in range. Because of the palpitations and the fact I was well into range, I had to stop the Acetyl. I cannot caution you enough. Unlike Regular L-Carnitine which helps your symptoms and your values a little bit and is more stable than Acetyl, your values will cascade into hypothyroidism very quickly if you just take it and don't get more frequent blood work and make many many adjustments. So in answer to your question, I discontinued the Acetyl when my TSH was 2.7 and my doc lowered my Methimazole dose to 2.5 mg every other day. On the off days when I take no Methimazole, I take 500 mg of REGULAR L-Carnitine and so far my labs are ideal in range, my TSH is 1.1 and my Free's are in the middle of the range. For Acetyl 500 mg or 225 mg capsules are better so you can adjust doses easier.
P.S. Jason, if you have subclinical hyperthyroidism, Regular L-Carnitine is better. The only value of Acetyl L Carnitine is that it raises TSH very quickly but if you are subclinical and take it, you will go hypo so fast. You don't want dramatic changes like that. Yes, once all my labs were normal where I wanted them, I did feel better except I still have a problem with dry eyes and use eye drops every day. Also get your vit D and Magnesium levels checked and if deficient add these supplements as well.
Am new here. I was diagnosed of Hyperthyroid in April and my results were t4- 45, t3- 23, tsh- 0.0005 my Dr give me Carbimazole 20mg and Propranolol 40mg after 6 weeks i did another test and my t4-10, t3- 6, tsh- still 0.0005.
Do I still need really to keep taking the Propranolol?
Hi Charles. Though we have a lot of similarities, we are all individuals in responding to this disease. For myself, my values (other than TSH) were not too far over the normal range when I was diagnosed and FT3 and FT4 immediately normalized on 10 mg of Methimazole (like Carbimazole in the UK). However, it took about 6 to 8 weeks to complete testing before I was started on antithyroid meds and during that time, my doc insisted I take Propranolol. Even then I took it as needed and not daily as she prescribed it. Have used it that way still. If I get heart symptoms, I take a half a tablet. I was 60 years old at diagnosis. Most of the time, I don't need it. But as I said, each individual is different. If your values are much higher than mine were, then you might need it daily. Currently all my values are within the normal range, even TSH and that was the most difficult one to get to rise but I was able to get it to rise after two years at less than 0.0001 by taking Acetyl-L-Carnitine but I would not recommend anyone take this without learning all about it and learning how to manage it because it is extremely sensitive and requires frequent monitoring and dosage adjustments to avoid going HYPO. I currently take Methimazole 2.5 mg 3 times a week to keep my values consistent. Stress avoidance is very important also.
I'm 53 and new with Graves' disease. I just start taking Methimazole 10mg (taken 3 tablets) once a day. I have low 0.005 TSH level. I had palpitation, I'm taking propranolol. I have sweating, anxiety, body aches, lost of weight. This disease scared me because of eye disease. I ask you, how long you had Graves' disease? How long the Antithyroid medicine work to reduce all the symptoms? Did it affect your eyes? I was thinking about having thyroidectomy and don't want to go through all the symptoms especially eye disease. How is your eyes now? Hope you are well.