Hi, I’m currently 4 weeks into lowering my thyroid dose by 25mg as I wasn’t feeling too good and I’m wondering how did most people feel when they lowered their dosage please as I’m up and down and all over the place?
James, I quit completely on May 14, 2018. Was taking 50 mcg for about a year and last December upped to 75 mcg. I have had no repercussions thus far. In fact, I feel so much better. A discussion with a few friends had me doing research and what I found and read and all I’m hearing I did not like. I don’t understand why physicians would prescribe a medication for one problem yet create a half dozen or more problems. What I have learned is the doctor who prescribed this Levothyroxine never discussed it with me but just handed me a prescription to take and like an idiot I had it filled and began taking it. I have since realized that I may indeed need this medication BUT there are a lot that needs explaining and checking out. T3 and T4. What do these mean for me personally?
TSH? Those have never been mentioned to me by a doctor. Should I see an Endocrinologist? Does a primary physician have the credentials to know all the factors about this medication? I am a 37 year breast cancer survivor. Double mastectomy with reconstructive surgery. Had 10 surgeries total. Silicone to saline to gel silicone with a couple flat tires and one went hard in between. So because of this when I went thru menopause they would not give me hormone therapy treatment to help me. Like going thru cold turkey. And I did. So why would they now want me on this? I’m sorry. I’m not a doctor for sure. But common sense yes. I need answers. So I quit this until end of July when my next blood work is scheduled. See what it shows. Go from there. But if I do consider resuming this Levothyroxine there will be lot more discussion on it. I will not screw up my system taking a slew of meds to satisfy a physicians hunger for kickback and not my health. Everyone is different. What works for one may not for the next. I am concerned.
Hi
When I had mine lowered I felt the same for a while. Before, I was feeling overmedicated. It’s just your body adjusting. I think it was something like 8 weeks before I felt like everything had levered out.
I presume you will be having more bloods done in a couple of weeks?
You have to get all your test results and figure out why you were put on meds and then also increased. You may feel.better but that doesnt mean you are better and not hving enough thyroid hormones.in your system can cause damage allover. Every cell in your body has receptors for thyroid hormones even your brain function can decline. You hvnt been off that.long to really feel what's missing. Get your results. Also, implants can do a number on your body and bring on autoimmune disorders. There's not much kickback if any in rxing thyroid meds they have been around for decades and are fairly cheap. Maybe you needed a dose adjustment.
Did you have chemo and or radiation both are toxic and can do a number on your thyroid and other organs. There's no conspiracy in putting ppl on thyroid meds if they need them. If they didnt that would be lot worse and very detrimental. Don't.just take any med given you without understanding or even asking why.
It’s not really advisable I was told to come off of thyroxine as your body needs it to function are you doing it under your doctors instructions ? Going onto other thyroid meds? Having your bloods checked . I would seek help doing this .
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I’m just over 4 weeks into my new lowered dose and I’m all over the place. One minute I feel like I’m getting bettter as my heart palps are calming down finally after 15 months of having them and then out of no where I can get a rush and have extreme brain fog and intense anxiety and feel exhausted and need to sleep.
Yes this is under doctors orders as I was feeling overactive and my results stated I was over active. I was taking 125mg and now I’m taking 100mg but feel all over the place. I’m having headaches and brain fog and tiredness. Is this normal?
Yes it’s normal. Give yourself time to adjust. Unfortunately anything to do with your thyroid and hormones doesn’t adjust/ settle overnight. Try to not worry about it or you will worsen your anxiety.
I think Clare’s message may have been for another person ?
Hi James, for what its worth, the for changes were pretty tough for me. I feel the body becomes very dependant on these medications, making it very difficult to go off. I’ve tried a bunch if different meds and doses. When i was lowering the NDTs a little, it didn't seem to be much of a problem as long ss they were only lowered a small amount at a time and really did need to be lowered. I was so messed up while on the Levo, I’m not sure I can remember anout loering a little- I just felt horrible all the time (really bad anxiety and brainfog so cant quite recall a consistant response when lowering small amounts). Changing meds was for sure a nightmare.
I know this sounds very strange, but the meds do suppress your own production of thyroxin. So if you lower your dose, it takes a while for your body to adjust.
Try some essential amino avid supplements. I found them to be extremely helpful when i was getting off the meds.
I also found acupuncture helpful in navigating thyroid disease, as it seems to help the body reset and get back to normal more quickly.
Just curious, did your labs show your meds were too high? Are they iskng TSH or T4 to guide dosing?
Are the meds working for you?
Also... you're up and down all over the place?
I feel the meds themsrlves interruptef my own oroduction of thyroxin such that it was impossible to get the dosing stabilized.
My end conclusion, for what its worth, is that the endocrine system is too comllex to try to treat at this point in the thyroid feedback loop.
I suspect that these meds suppress more than just the TSH production by the pituitary gland. And likely suppress other aspects of the pituitary gland- basically supression of the pituitary function can really mess you up since it controls your entire endocrine system.
Please try keeping a journal of how you’re feeling and what dose changes youre dealing with. This is the best way to determine whether these medications are helpful or not.
You are a Grave's AB person who took antithyroid meds that is a lot different than a Hashi AB person with hypothyroidism. You shoukd ask ?s directed to Grave's ppl who hv undergone the same treatment. You can still be reacting from Grave's TSI.ab in your system. Have TSI antubodies tested too. There are also a lot of youtube videos on this topic.
Thanks for your reply, I’m sorry to hear you have suffered also. I have Graves‘ disease so I’m hyper but have been given the block and replace method. So I redoing my thyroxine level.
Thanks for your reply. It’s helped me ease my mind, what a crazy illness this is.
Ok, I will next time. I did how ever post on the hyperthyroidism forum and i got directed back here.
Thanks for your reply, I have Graves’ disease but I’m on the block and replace mehthod. My blood results showed I was slightly hyper at 125mg and my endo advised me to decrease to 100mg. But I’ve been feeling hyper sometimes by having intense anxiety and heart palps and then hypo where I’m just completely exhausted and have no strength have to sleep but no heart palps. Then there’s the brain fog. What a nightmare. Wish my endo earned me about this first. I just hope this is normal after a decrease and I hope it doesn’t last too long.
The Graves ppl.go through a lot especially the ones who had it surgically removed. It just takes time to get to the right dose. Some
hv to remain hypo for awhile.
before they take replacement meds. But it's great to be able to see and hear.these ppl and get.glimpse of Grave's to HYPO. Im outside.now and will. watch a few videos when I get home. My dropping of dosage which I.didnt want was a disaster and almost cost me a job. No anxiety or palpatations or stress just slowly walking through thickened sludge and thinking that the doctor made a BIG mistake at.my expense.
Hi James, I don’t know what the block and replace method is. Is that the kill off your thyroid with radiation, then replace with meds?
I’ve seen a bunch of posts on that. You trade one disease for another.
Hyperthyroid is easier to treat naturally than hypothyroid. Hypothyroid often toggles between hypo and hyper as the disease progresses. The two aren't as different as we think, just different aspects of disease.
If you were a Hashi hypo you wouldnt have the palp and anxiety on a decrease...Grave's is a horse of a different color as they say. You still hv your thyroid and Grave's antibodies. Maybe you can ask another question about Grave's block and replace and being allover the place. You need more input from Grave's ppl. You can do a web search on Grave's block and replace and then look at the many videos from Grave's sufferers and the comments under the videos. You are not alone there are many going through the same ordeal and feeling the same varied symptoms hyper and hypo. Keep your doctor informed about what's going on don't wait for next appt.