Hi Rosie, We simply need better trained & understanding doctors to take a better approach to determine & diagnose the thyroid decease properly. Majority of them doesn't have a clue regarding the horrible side effects and what's works best for the patient. Actually my doseage was determine based on my weight which sounds very far fetched to me.
I dont know know why most doctors have a hard time prescribing the pig thyroid, from what I've read in many articles it was the first med given in the U.S. since the late 1940's. Seems as if they only go by blood work to determine the dosage. However, with my experience on Levo for a short period, I think that it goes far & beyond that.
Bottomline- when we are feeling awful or over medicated most doctors pretty says- deal with it! Not fair! Unless they experience the side effects themselves, they're purely clueless. It seems as if they don't realize that most of us has to deal with this for the rest of our lives.
Yes a petition sounds like one of the answers. Thx so much for your comment. Good luck to us!
I researched Levothyroxine a lot, same as Synthroid in the US. What I found was horrifying. A lot of it is being manufactured on the cheap in India and China where the quality control isn't what it should be. I believe that this is at least one reason why people are having problems with it. I read that the US Government took one company to court when they found out that quality control was poor, amazingly though they carried on using them, they were just fined.
Wow, that's horrifying! So scary! And, the awful thought that I'm administering this terrible drug on a daily bases. The U.S. Government do protect their citizens when it comes to factors such as this. There's got to be way through this.
Rosie, what is ERFA? Do you reside in the US or UK?
Yes!!!
Depression lifted💥💥💥
Then came the rash, headaches, itching, eyeballs look like they are bleeding, feet etc swelling.
PD ordered brand name Cytomel but fight RX company.
I went off generic and everything went away.
Went back on generic and all are back.
Nobody wants to talk about this on here except singing praises of Armour.
My PD? Armour Not gonna happen and he’s great about trying anything (which we have that didn’t help) to keep dark depression away.
ME!!!
Trying to see if brand name will have same side effect because sure can’t take lyo.
I went off and sides disappeared but the depression back also.
Went back on generic: rash, headache , edema, itching, eyes wayyy bloodshot especially my right eye which I ended up with optic neuritis and kept losing my sight in right eye.
My neuro is an idiot so no help there.
No more lyo.
Wish somebody else would talk about the brand name cytomel.
Oh yes, lumps on thyroid swelling again
Same here. Every time on generic of all meds from India or China send me sideways and not in a good way
What does our Gov. USA do
about generics to stop these companies?
How do we tell them?
Frantic here.
Due to Optic neuritis , my neuro did CRs and MRIs everywhere seems like.
Found 3 tumors on thyroid but said no problem. WHAT??
After reading about your thyroid removal plus the hell my sister went through over Hash
Surgery, I’m really hoping they don’t get bigger.
I have enough probs with thyroid but without I don’t think I could handle even worse problems.😫
Rosie, you’re right.
I believe I got parasites from these meds.
There are no required water tests for parasites.
Now many clinical studies are done overseas, and the subjectsgrand. Ag are highly motivated, as they make their living as test subjects. So they aren’t necessarily motivated to be honest. Theyoften participate in multiple drug tests at the same time.
Synthroid was grandfathered into the existing FDA system. Do a search for NYT .
The way the FDA works is that generic efficacy is based on comparison of the brand name drug. Generics must be within a certain percent efficacy of the brand name. Since Synthroid was grandfathered in based on its prior use, you basically have a whole class of drugs Who’s efficacy is based on a brand name drug that was never tested.
I can attest to this, as I tried Synthroid, generic, compounded... none worked and I kept getting sicker.
You could argue that it didn’t work because I was misdiagnosed, however the giant cyst on my thyroid gland indicates an obvious diagnosis.
I’ve noticed quite a few people post flue like symptoms here at the onset of use of these meds. I suspect these sy,proms are likely due to to parasitic contamination.
By the time you get yourself together enough to figure things out, you’ve got so much going on, you can’t tell. What’s what.
I have not had my throid removed, however, I have hashimotos thyroiditis and have had two metabolic collapses as a result. I am 5’4” tall, and at my heaviest I weighed 320 lbs. (18 years ago). It took 18 months with diet and exercise but I lost over 200lbs and kept it off for 10 years until I had my second metabolic collapse. Where I had to lose 90lbs (I still have 40lbs to go). Turned out my Synthroid was reverting backwards and not converting the T4 into beneficial T3, causing me to experience weight gain, fatigue, along with low body temperatue 95° in lieu of 98.7°, causing regular pimples to turn into abcesses and cystic acne (very painful). I now take 25mcg of liothyronine 3x/day and took me 100% off of the T4 (Synthroid). It is a blessing!
I also take 200mcg of Selenium every morning with my first dose. The acne and abcesses have ceased, and weight is slowly going down. I am greatful to have a chance to feel somewhat normal.
Ccarter, thank you for posting and for your history. While sorry for your difficulties, I appreciate your story and can relate.
Thank you. I have hereditary thyroid disease, and I was diagnosed at 16. My mother and grandmother had Graves’ disease, but on the first one and four generations to have Hashimoto’s. I was diagnosed I was 16, but I was not told about my diagnosis since until I was 29 and lost a baby in utero in the fifth month. All they said was That’s what happens when you have hypothyroidism. It was a blow, but an answer to fighting the yo-yo effects of being real thin, and real heavy. I’ve been fighting edima since I was 10, and have been taking diuretics for 40 years because of it. It is nothing for my weight fluctuate 15 pounds just with water weight alone. I read all the horror stories about this medicine, but when you wrap your head around the fact that your medicinally dependent for the rest of your life to stay alive, the medicine is really a blessing. I’m just thankful that I have a means to keep my weight it normal weight, and have normal weight loss issues, as opposed to being 326 pounds and having to lose the weight just stand up without being in pain. It could always be worse, this way I look at it. The sad thing is, I have three daughters, and each one of my daughters have been diagnosed with hypothyroidism, and my oldest daughter is 23 years old is been fighting Hashimoto’s and she was 14. The one thing I’ve learned from this experience , Is that if you’re not your own advocate, the doctors really don’t pay attention to you they pay more attention to the textbooks. These people have an issue with her thyroid because it will have the right doctor for their treatment. When they find the right doctor, things fall into place miraculously. But it is a joint effort and a lifestyle change to correct the situation.
Holy Moly, Your docs let you get in that kind of terrible shape, sick , OMG, my heart breaks. My anger also gets riled about "professionals" not paying attention. You have to do your research yourself and advocate for your 5'4" self LOL. I'd get well, the sue the crap out of them. That's just wrong. You do realize you most likely have autoimmune all over you now. The constant infections say so. Just take care of yourself and for goodness sake never take a doctors word for it. Check before and after them. That sounds awful of me but I've been in this system too long, nearly died 5 times in the ER but happened to have a nurse daughter and a nurse friend always with me to check behind them and make sure they didn't get sloppy. I kid you not if it weren't for the careflight team knowing more than the doctors I would have been a dead duck a long time ago. SELF ADVOCATE AND EDUCATE. Google LOL
Hi Tooter, seems to me, we’re at the mercy of docs. They know the game, we don’t. By the time we figure it out that none of the treatments work, we’re in REALLY big trouble and too messed up to help ourselves!
Read enough of these posts and you have a chance to get ahead by knowing the progression of the disease, the treatment the effectiveness. I’ve seen way too many posts from people getting thyroidectomies, who’ve followed doctors’ advice and still wound up getting their thyroid removed. Way too many people who trade hyperthyroid for hypothyroid disease- what good is that!?
I’m not impressed with standard thyroid treatment protocols.
Hi, could you share the non prescription med you are on?
I was doing well with a combination of Armour and cytomel but can't get the cytomel. It is out of stock and back ordered everywhere.
Thanks,
Teresa
Hi Tsartin, the closest to your own thyroxin is a bovine glandular. ThyroGold us the best. You can order online.
I’ve found essential amino acids to be incredibly helpful. I used the amino acids to get off the meds. You can find these on Amazon. I can send you a private message with the name of the brand if you like.
Yes, please PM me with your thyroid protocol and name of products. I'm struggling a bit on compounded Armour thyroid.
Thanks!
Hey Tooterbug, are you still in this forum?
I've been on generic liiothyronine (cytomel) for 4 months and have battled with sudden weight gain of ten pounds. I'm battling to keep it from going higher.
My doctor has ordered brand- fighting my insurance and finally said to heck with it, I'll pay out of pocket- and I'm going to! That generic cytomel is awful. I'm convinced that's why.
Thoughts?
i asked my doctor to put me on generic cytomil due to finances. two weeks in i am extremely bloated in the belly and sleeping poorly. could the change be the reason. Is there a difference in generic cytomil. Has anyone had this happen?