Regrets 1 year post-total thyroidectomy...
Posted , 7 users are following.
Hi all, I'm new to the forum and this is my first post, so apologies if I've gotten anything wrong...not really sure where to start, to be honest.
I had my thyroid completely removed around this time last year at the age of 19, after suffering from an overactive thyroid due to Grave's disease since I was around 16. For those three years I'd been on varying doses of carbimazole and propranolol because my thyroid would return to normal for a couple of weeks, before relapsing to be even worse than it was before I went into remission. I couldn't take the back and forth anymore, on top of battling the side effects of such a high dosage of carbimazole (eventually 50mg, if I remember correctly). I had gotten into my top choice university, but my grades began to suffer terribly throughout all of this and i had to make the tough decision to 'drop out' temporarily due to illness, and repeat a year. This has been a truly painful journey. I thought it would all be over if I just removed my thyroid altogether...I was told at the time that i was pretty treatment-resistant to the carbimazole, since I kept getting worse whenever the dosage was changed. So I opted for the surgery instead of the radioactive iodine therapy, for fear that I could become overactive again, and potentially have to drop out of uni forever. In that time i was suffering tremendous pain all over, bulging gritty red eyes from Thyroid Eye Disease, inability to sleep longer than 3 hours at a time, anxiety and suicidal ideation...it's difficult to recall all those painful memories.
Since having my thyroid removed, I seem to have only replaced those problems with new ones. My bulging eyes are still there (though my TED seems to be inactive now, which I'm immensely relieved about), my weight is all over the place despite my appetite being low, my stomach is constantly distended to varying degrees (I always look pregnant) and i often find it difficult to keep meals down if they are too large (embarrassingly i am also quite constipated..) yet I am currently on 200mcg of Levothyroxine! The doctors all told me that I would be just like everyone else once I recovered from the surgery...but I feel terrible. I feel so defeated, like there's nothing else I can do...I have all these symptoms that sound suspiciously like I'm underactive, yet all my bloods are within normal range. Levothyroxine is the only drug available for this on the NHS, but it seems like it might be the culprit for all these issues...maybe my body can't process it well enough? I feel so hopeless. I tried to tell my endocrinologist about this a few weeks after my surgery, but he told me it was nothing and took me off of the register. Since then i've been going to the GP nearly every other week with the same problems, only to find that my old endocrinologist had responded to her emails saying that I must not be taking my medication...I'm at my wits end, and so, so hopeless. I'm only 20 years old...is this what I have to look forward to for the rest of my life?
0 likes, 7 replies
Cris.Leggs lau82
Edited
Definitely praying for you! It was prayer that got me through the removal of three and a half of my parathyroid glands and trusting God. After the removal, I did not feel better after 2 years! I finally found that the doctors are limited in what they can do and so is the medication! Again, I am praying for you, God bless!!!
ruth51315 lau82
Edited
I feel so sorry for you. I have Hashimotos and I find the HealthUnlocked forum very helpful. Search under Thyroid issues . Thyroid UK would also provide more helpful replies than what you have received to date. On the HealthUnlocked forum there are several very knowledgeable members who have a wealth of information on all sorts of thyroid issues. I am sure you would find more helpful advice there.
Good luck.
lau82 ruth51315
Posted
Thank you so much for this suggestion.I took your advice and started a thread on the forum, and have been receiving amazing support and advice. thank you so so much
ruth51315 lau82
Edited
You are so welcome! The members on HealthUnlocked are brilliant. I hope with their advice, you begin to find the answers you need and feel better soon. Wishing you all good luck for the future.x
Sgt.lindalee lau82
Posted
Hi Lau, I think if you don't get help from one specialist it is time for a new one, keep a log of your medications, diet, symptoms as it can be helpful to the proper specialist, preferable not just a surgeon(once they cut, they check out typically) Unfortunately, I cannot help with the thyroid portion of your concerns, I so wish I could but, I have a few suggestions for your belly, of course ask your Dr before using anything natural or OTC as they can be contraindicated for thyroid issues!! If you have nausea, there are medications to try, even in small doses, some by prescription, being constipated can make you nauseous & feel full, no appetite(so can some meds and hormones) if you don't eat regularly it can cause acid and gas to build up, not to mention make you run down, tired and weak...if you can eat small amounts, even snacks every few hours and ask your Dr if a multi-vitamin can help, you will not get the nutrients needed if you aren't eating healthy, food however gives you energy, too...you can try meal replacement shakes or smoothies, its better than nothing(ask your DR as supplements have maintenance levels) you really need to have plenty of fluids, water is best & avoid caffeine, things like herbal tea, juice, popcycles, jello, fruits(fiber too)...ways to get extra fluids....you also need fiber (which you can also drink), BOTH help with constipation, some people take probiotics in yogurt, or capsules, powder & etc...those should help with moving things along, which will eventually make you regular w/o bloating...constipation can be from your meds maybe? So if those things don't work, your Dr can tell you if a stool softener(like docusate sodium etc..) & a mild natural stimulant laxative (like sennosides/xlax etc..) for helping you go can help, there are things like PEG3350, that taken daily can fix up even the worst constipation but, you need to work it out with your DR....maybe that was a weird choice of words...figure it out sounds better lol....I really hope you get your thyroid issues straightened out, so you can get your life back...I had 1/2my thyroid removed due to 25% chance of cancerous tumour, after 2yrs of biopsies(abnormal, inconclusive) & a family history, I went for it, couldn't handle thinking that thing could change or already be spreading, turned out non-cancerous but, had no problems & a wonderful surgeon, no regrets...Hopefully this will get fixed up soon!!!Good Luck & BEST WISHES💒🎶🐾🌈🍀☮♾🥰💐
NegNicky1 lau82
Posted
I feel like I just read my story. I got my thyroid removed in 2021 and I have felt miserable since. I thought I was terrible before. My health is all over the place. I now get ovarian cyst every month. Sometimes they are bad, sometimes they are bearable. My weight goes up and down from Fat to really fat lolbs. I have no motivation to do anything, I have force myself to do literally everything. My emotions are all over the place, one second I'm extremely sad, to really happy, to really mad, to BLAH. It's a pain in the butt. Currently, I'm having trouble sleeping, staying asleep, or sleeping too long. I wish I had never removed it, I learned so much in this time of ways I could have healed myself. I held out for 2 years, I kept telling my doctors I shouldn't, but they convinced me once my eyes started bulging and showed me a book of horrors of what could happen to my eyes. I feel your pain sis. 😔
wissal37003 NegNicky1
Posted
hi
sorry to hear that ur feeling miserable
can i ask you why you removed it ?
thanks