Posted , 3 users are following.
hi guys
had bloods done a couple of weeks ago and endo said i am now euthyroid, so has reduced my carbimazole from 20mg per day to 10mg. I felt fine at 1st but 2 weeks on the new dose and i am starting to get some of my old symptoms back. was wondering if any had experienced that and whether the feelings are just down to my body getting used to the lower dose.
thank you
0 likes, 8 replies
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arlea13920 dean74191
Posted
Have you asked your doc? I was taken off my medication a month ago, and i hurt like crazy. mostly in my back and right arm. walking is hard. To make matters worse i also have COPD
This is definately something you will have ask your or learn to live with it.
Wish it wasn't something we have to deal with.
Prayers
Arlea
arlea13920 dean74191
Posted
Have you asked your doc? I was taken off my medication a month ago, and i hurt like crazy. mostly in my back and right arm. walking is hard. To make matters worse i also have COPD
This is definately something you will have ask your or learn to live with it.
Wish it wasn't something we have to deal with.
Prayers
Arlea
arlea13920 dean74191
Posted
Have you asked your doc? I was taken off my medication a month ago, and i hurt like crazy. mostly in my back and right arm. walking is hard. To make matters worse i also have COPD
This is definately something you will have ask your or learn to live with it.
Wish it wasn't something we have to deal with.
Prayers
Arlea
dean74191 arlea13920
Posted
hi there
as yet i havent spoken to my doctor, they will more than likely just refer me back to my endocrinolgist. I will give it a week and see if the symptoms settle down.
thank you for the reply
linda187 dean74191
Posted
I had a similar thing happen. I was diagnosed with Graves disease in 2007 and placed on 10 mg of Methinazole. It immediately normalized my Free T3 and T4 to mid range but my TSH did not budge from less than 0.001 for two years. So I stayed on 10 mg for 2 years. Then I added some supplements to my treatment and my TSH began to rise, so my Endo cut my Methimazole dose in half to 5 mg. I was okay for two weeks and then began to feel symptoms again. So I called my Endo and told her that I felt the dosage was lowered too much and too fast and I wanted to raise it and she agreed to raise the dose to 7.5 mg. I then got a new Endocrinologist and he was great with small dosage lowering adjustments. I think this is very necessary with this med and this disease. The body does not react well to huge changes in dosages. I was diagnosed in 2007, was on the same dosage for 2 years and then slight lower dosages, from 2009 until last April when I finally agreed to stop the meds and supplements and so far, touch wood, all my labs have been normal and my antibodies non-detectable. The last dosage I was on was 2.5 mg every other day.
dean74191 linda187
Posted
hi
thank you for taking the time to reply. I agree that our bodies do not like drastic changes and halving a dose sounds pretty drastic to me. Always good to hear someone who has felt the same. What supplements have you been taking as my TSH is still 0.001.
thank you
linda187 dean74191
Posted
If possible, it would be good if you can get someone to test all of your important values like vitamin D, B vitamins, Magnesium etc. My Naturopath offered to do this. He had a lab that would do everything for $300 but I didn't have the money at the time so I just tested for what I knew and wanted to take before I took it. I have read that most people are deficient in vitamin D and this is very necessary for good thyroid functioning. I was deficient. I take 1000 IU of vitamin D in the form of Gel caps which i think work better than vitamin D pills. I was low in Magnesium so took 150 mg of Magnesium Citrate. Most hyperthyroid patients lose a lot of vitamins minerals and amino acids when their bodies have been running hyper. Docs don't address this but if you do, your recovery will be better. I read a research article on the benefits of hyperthyroid patients taking 3,000 to 4,000 mg of Regular L-Carnitine. I asked my boss about this, he was a genetic metabolic specialist. He said, "well it won't hurt you" so I asked my new boss to test my Total Carnitine and Free Carnitine levels and I was deficient in this. I started with the vitamn D and carnitine and my TSH rose to 0.12. Then I decided to experiment with different types of carnitine and took 1,000 mg of Acetyl-L-Carnitine and 1,000 mg of Regular L-carnitine. My TSH quickly shot up to 0.70 which was in the normal range for my lab. Then I could not get the Acetyl for a few months and my TSH dropped again. When I could take the Acetyl L carnitine again, I took only the Acetyl L carnitine and took this at the same time as my meds and my TSH rose well into the normal range. This required a lot of adjustments on my part and my doc's part. He adjusted the Methimazole dose and I adjusted the supplements of both. I wanted my TSH to be consistently around 1.5 and at times it went up to 2.5. While this was happening, my Free T3 and T4 fell to the bottom of the range but as long as it stayed in range, even at the bottom, I was more concerned with my TSH level normalizing. Finally when my TSH was at 2.5 and my Methimazole dosage was 2.5 mg every other day, I discontinued the Carnitine altogether. My TSH levels then dropped a little each month until after 8 months it had dropped to 0.70. Then the next month, it rose to 1.5 without me doing anything in adjustments. When I asked my Endo about why he thought this happened, he said maybe it had burned itself out. I was reluctant to stop my meds altogether but finally this April I did and my labs measured every 3 months remained normal in mid range for Free T3 and T4 and my TSH between 1.3 and 1.5. I do have to caution you however, this requires a lot of adjusting of dosages, My doc adjusted my meds dose and I played around with my supplements dosage. From the postings on this Board, it seems that people who have Graves disease do better on Acetyl L-Carnitine because the Acetyl carries the carnitine and meds and whatever else you take at the time across the blood-brain barrier and therefore helps your meds to work better. There is a little bit of Acetyl and a lot of carnitine in Regular L-Carnitine and just the opposite in Acetyl L Carnitine, meaning it has a lot of Acetyl and a bit of carnitine. Patients who have Hashimoto's disease as the cause of their hypertension do better on Regular L-Carnitine as opposed to Acetyl. That's because the antibodies in Hashimoto's attack the thyroid gland directly whereas in Graves they attack the TSH receptors in the pituitary gland. Unfortunately the docs will not know anything about supplements.
dean74191 linda187
Posted
thank you for the very detailed advice. its incredibly helpful