I posted here recently about going hypo from 20mg carb- t4 was less than 5 normal 8-22 tsh 3 normal 0.35-4.95 t3 2.74 normal ( 2.43-6.01) I was symptomatic with weight gain and also muscle pains in my legs so bad waking me from my sleep!! My endo reduced me from 20mg to 5mg and usually asks for bloods 6/8 weeks later but because I have my yearly appointment this week asked for blood results this week. To my disappointment I’m gone hyper in 3 weeks .t4- 18 same reference rang as above, tsh 0.01, t3 6.52. I feel very tired and anxious which has never happened me before when iv been much more hyper than these bloods above!! How did i flip so fast in 3 weeks??
wanted some advise before I meet my endo this week, what do I need to ask? Why do I still have severe muscle pains in my legs ? I presumed this was a hypo symptom??
feel so deflated as I had a stable thyroid on 5mg of carb and decided myself to stop taking this which sent me hyper I hoped I had gone into remission!! Sadly proved wrong!! I’m hoping and praying to get back to stable bloods on 5mg carb as I really am against removing my thyroid which my endo is very eager for me to do!!
Is it possible to stabilise again? Why have I such severe muscle aches ??
thanks in advance x
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Busyy
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Muscle pains can be a sign of hyperthyroidism. And yes, it is possible to go hyper that fast if you are not yet in remission and stop the medication too early. It will be fine when you go back on it.
Thanks for reply , I went hyper in the last few months and was increased to 20mg carb for 12 weeks which sent me hypo - this is when I developed the muscle pains when I was hypo , I was reduced 3 weeks ago to 5mg and on 5mg iv gone hyper in 3 weeks!!
yes I have tried 3 times to go down to 5 mg.... first 2 times, I went back to hyper after 4 weeks and 3 months respectively. On my last trial, it finally worked... that was after about 5 years on a low dose.
That would suggest that 15mg was too big a reduction in one go! Hope things stabilise but maybe you need to be on 10mg.I had 3 trials of coming of carbimazole and went hyper again each time. Ended up with RAI.
Do you mind me asking are you glad you had RAI? I’m not suitable for this my only option is a thyroidectomy as I have thyroid eye disease and RAI iv been told can flare eye disease
Yes RAI is not for folks with TED. I never felt really well on carbimazole and there was still an anxiety that I'd never had pre hyper. The endo I had also was not one who believed in very long term carbi use and I'd been on it 5 years.
I don't regret the RAI. I'm better being hypo. What I do regret are the 4 years following RAI when I was left undermedicated on levo which made me very ill. I wish I'd know about this site sooner and learnt enough back then to push for better post RAI treatment.
I really hope that your symptoms stabilise as this will help with your TED too. Do you feel the eye that is affected now is as swollen as the one that you previously had a procedure on? Are the steroid drops having any effect? Just checking you are taking a selenium supplement (200ug daily recommended during the active phase of TED). As Lalatoot has mentioned, RAI is unsuitable whilst TED is active, so do stand your ground if your endo continues to push for this.
Thanks for your reply , my previous eye that developed TED didn’t appear like this eye , my previous eye had a little puffing under the eye but biggest problem was the upper eyelid retraction. So far this eyelid seems to be just very puffy both under the eye and the upper eyelid , I don’t feel the steroid drops are making any difference but Il continue on them for the 4 weeks anyway just to see !!
My endo is very much against RAI as I have TEC but Is very much in favour of a TT which I’m just not ready to do but sometimes I wonder am I making a good decision considering my recent flares and TED flare !!
Could be low levels of vitamins and minerals as it's very common when both hypo and hyper -
When hyper the body's gear box is working in overdrive and found 7th gear it's running itself too fast and loss of muscle strength and mass occurs leaving you exhausted while just sitting on the sofa -
conversely when hypothyroid and metabolism running too slow and stuck down in 1st gear or with a flat car battery and not ' charging ' enough - aches, pains and loss of stamina are common issues.
Ask for your ferritin, folate, B12 and vitamin D to be run and share the resultsand ranges here and we can offer suggestions as to building up levels to optimal to help support you through this phase of ill health.
I now aim for a ferritin at around 100 - folate around 20 - Active B12 75 ++ ( serum B12 -500 ++ ) and vitamin D around 100 :
I have the same questions as you Busyy. On top of everything, my endo wants me to stop taking 5 mg Carbimazol in January with no preparations. When I asked what it will happened if I feel seek just as I am when I miss my medication, he told me that if I do not want to stop, I can do my own way. He told me that my symptoms might be from something else and why would I miss my chance o being cure. Also he keeps on telling me that I can have surgery. I am so mad with this system that is not interested in helping people but only in making money on our backs.
"He told me that my symptoms might be from something else..." Oh geez, don't fall for that one! At the height of my frustrations with my first Endo that is what she told me, "Go back to your GP and find out what is wrong with you, your TSH is perfect, my work if finished!" That did it for me, I realised I was on my own so I had to hit the books on a subject I knew zero about but I knew my life depended on it. Then I found this site and after 2 years of fiddling around with doses, I became normal again. Keep fiddling around with your doses, get your bloods measured after each change and record how you feel at each dose change. You will get there, it took me 2 years. It can cost a bit at first but once you are normal those expensive tests can stop.
I wasn't going to reply as I am fed up hearing myself repeat the same old mantra......slow and steady 🤣Then Giulia12 added that her Endo wants her to stop taking 5mg. Carb. According to Elaine Moore an American Expert on Graves, doses down to 1.25mg are effective and it is perfectly acceptable, desirable even to cut 5mg. Tablets or take on alternate days in order to wean off very very slowly
Hi , I was hyper for many years. Ted also. Refused to have Rai and was medicated with 5mg carb for 14 years. Which I believe causes joint pain that I've never be free of. Stopped meds 6 years ago and seemed fine. Managed the joint pain as best as I could, Ted disappeared too.This year showing hypo symptoms fatigue and pain so am trying to sort this out . My graves kept coming back when I stopped carbimazole but it eventually burnt itself out . Found out I was sensitive to artificial sweeteners so cutting them out helped and a healthier diet. Hope you find what's best for you.
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