Posted , 6 users are following.
I must say hats off to anyone that is dealing with this disease. I was diagnosed last year with hyperthyroidism had 2 nodules on both sides of my neck. I went through the iodine treatment which shrunk 1 of my nodules. I have been going to my endo every few months to have labs done and thyroid levels checked. While going through this I have been in and out the hospital for high blood pressure problems along with chest pains. I'm on every type of meds you can name (metropolol..levo.. Vitamin D..iron pills...buspirone...) I have very bad anxiety, can't sleep at night. Just recently I was hospitalized again and now I have Hypo so my heart beats very slowly and still have all the same other issues. So I'am a mess I feel like I'm going crazy and so tired of taking meds and going through this. I can go on and on and talk about my issues but I must say prior to last year I was a pretty healthy 40yr never had any HBP problems or chest issues
1 like, 21 replies
PinkuNeesama chiffon40
Posted
Thanks for letting us hear your story. I can't say I feel the same as you. I have hypothyroidism since 2008 when I was still 16. It didn't matter so much until I was in college, finished my course and can't even have a job to my liking because of the efffect of an underactive thyroid. I stopped taking synthetic meds since two years ago(got discouraged when endo says i have to take levo for a lifetime), tried natural/alternative meds but doesn't work all too well for the thyroid tho it sometimes have a good effect to the overall body.
Now I have stomach bloating. Imagine a single lady, on mid twenties, looking like carrying a baby for the whole year! There's nothing much I can do but continue living. I'm trying to have a gluten-free diet and will try probiotics for the bloating.
Anyway, I'd go back to my endo next month, hopefully. I can't do anything for this condition but do my best to embrace myself and do what is better for me
chiffon40 PinkuNeesama
Posted
Hi
Thanks for the response I can't say I have experienced the bloating yet but hopefully your doctor will prescribe you something that will help.
PinkuNeesama chiffon40
Posted
Thanks Chiffon. I've talked with a company doctor (IM) yesterday, he told me it might be flatulence or constipation, based on what I'm feeling. He gave me simethicone 40 mg. I'm taking it... hope it works lol
chiffon40 PinkuNeesama
Posted
That' great let me know if it helps.
cia42277 PinkuNeesama
Posted
I don't remember if I told you, Pinku, but there is a simple blood test to see if you are gluten sensitive. The results come back quickly. I asked for the test and have no problem with gluten for which I am grateful, because gluten is in so many things. Consider checking it out.
PinkuNeesama cia42277
Posted
I haven't tried the test but I think I'm already practicing gluten free diet since before. I only ususally eat veg, fish, white rice and water. I'll look for a clinic which offers the test. I had my blood sample taken yesterday for company annual check up. I didn't see gluten sensitivity test on the list they gave us. I'll just find anotherone. Thanks
cia42277 PinkuNeesama
Posted
I had just had a full panel test, but had to ask for the gluten test. There is a more medical name, but I don't remember it, so i just asked for gluten sensitivity test. It should be easy to get.
If you are not sensitive, you will be able to have a much wider diet. Let me know how it goes.
MtViewCatherine cia42277
Posted
The gluten tests are generally antibody tests, that tend to show negative unless you're eating a ton of wheat. There is a genetic test, but I haven't been able to get it.
The gluten free diet is super important with thyroid disease bc the gluten protein triggers an autoimmune response against your thyroid and specific other cells that have surface proteins similar to gluten. So the gluten really worsens any autoimmune disease, including thyroid disease and fibromiagya.
With gluten free, you have to do a ton of research bc unlike most things, a little gluten IS NOT OK, since any amount triggers the immune system to attack your thyroid.
cia42277 MtViewCatherine
Posted
Are you in the US? Where does one even start to look for the genetic test?
If you don't mind, are you a medical professional? I was a counselor for years before I retired, but did not deal with physical medical conditions.
christine53440 chiffon40
Posted
I have not had the nodules or iodine treatment, just Hashimoto's, however I would suggest taking Nature-Throid or a thyroid medicine that has Both T4 and T3. I started on Synthroid and switched to Armour, which is a more natural hormone. On Synthroid I had terrible symptoms and was then diagnosed with Fibromylagia several years later. I felt better on the Armour and much much better on the Nature-Throid. And the surprising thing is it's only been a week! It is just amazing too me that I could of felt better years ago!
MtViewCatherine chiffon40
Posted
Hi Chiffon,
unfortunately your story is along the lines of what we've all experienced.
I have a biology background and feel the treatments available through traditional medicine are more harmful than the disease, and in most cases , as seen in lists here, in fact the treatments worsen the disease. It also appears the synthetic meds cause fibromiagya.
I have been able to reverse the disease through natural means and with traditional Chinese medicine. I gave never been able to find a practitioner that really knows how to treat the problem, so most of what I've done has been trial and error. I figure, it isn't any worse than all the ridiculous trial and error with the meds, none of which worked. At least the stuff I tried either worked or didn't, but didn't have horrible side effects.
There are tons of posts here, where people have posted their experiences. I encourage you to read as many as you can to see what has and has not worked got others.
I would ukd also encourage you to look at your other meds because, my experience has been that in general, once you get going on the priscriotions, they all have so many side effects that you can't tell what's what. So many drugs cause liver and kidney problems.
The anxiety you feel us also typical on the synthetic meds.
The other thing with thyroid disease is that you really need to treat the whole endocrine system because the hypothyroidism can throw all the hormones off. Once you find a thyroid treatment that works, you'll need to treat adrenals for sure, clean up your diet, etc.With thyroid disease, you MUST have superb eating habits!
Im happy to pm you if you would like specifics.
cia42277 MtViewCatherine
Posted
janice76183 chiffon40
Posted
I'm having all of the same symptoms. My doctor found a growth on my thyroid after I complained that I feel like someone has their hands around my neck lightly squeezing. I recently had a bone marrow biopsy because I have way too many platelets. I got the result today which basically said I have extremely low blood iron levels. Now I have to take iron for a while and that's sure to add to my constipation issues. I can't sleep at night, my face is starting to get puffy with under eye edema. I've been going to doctors for almost a year but still have not been diagnosed with anything. I've been checked for thyroid, lupus and leukemia. My money is on thyroid problems, but still my levels come back normal. I also have A pituitary tumor and am starting to stress out from not knowing what's going on with me.
MtViewCatherine janice76183
Posted
Janice, follow your gut. I'll give the advice I was given by a psychiatrist: shop around until you find an endocrinologist who will diagnose and treat you.
That said, have you had an ultrasound done, to check for small nodules? Often this is the only way to find thyroid disease because the body will do everything possible to try to maintain homeostasis of the thyroid. Meanwhile, as the body spends all its energy to keep the thyroid maintained, the rest of the systems in the body get sacrificed, resulting in a tons of non specific symptoms, and general health failure.
PinkuNeesama MtViewCatherine
Posted
"Meanwhile, as the body spends all its energy to keep the thyroid maintained, the rest of the systems in the body get sacrificed, resulting in a tons of non specific symptoms, and general health failure."
That might be one reason why when I stopped taking levo, to assist my underactive thyroid, I got all sorts of bad things going on my body - low iron, bloating without specific reason and all sorts. I thought by stopping to take my levo, it won't have an effect on my body.
MtViewCatherine PinkuNeesama
Posted
Hi Pink,
well, the levo doesn't work for many people. My experience is that it shows in blood work but is not functional. So I felt like I wound up with the horrible side effects from the levo, plus, since it didn't treat the hypothyroid, I still have full blown hypo symptoms.
Try ray the non prescription organic bovine stuff. It seems to be the best of all the stuff I've tried. Doesn't seem to trigger the immune system, as the prescription meds do. And it's the closest as far as T4/T3 ratios. So you don't get the big imbalances with higher doses.
PinkuNeesama MtViewCatherine
Posted
I can't say anything about my T4/T3 performance as of yet (been two years since I was tested). However, my last result shows I was on normal level on TSH, T3, T4 after so many trial and error. I just didn't like that thought that taking levo would only "control" the size of my nodule, and I have to take it forever.
I switched to a healthier diet recently and alternative meds through homeopathy but it has weird and somewhat not-good effect on my overall body. I've tried organic stuff too, it somewhat helps but not directly my thryoid, I think :\ When I was on levo, my endo didn't allow me to take other natural/organic meds tho.
MtViewCatherine PinkuNeesama
Posted
Yeah, the docs never want you to take anything else bc they can't tell what's what.
what sort of alternative meds and treatments you finding to be helpful?
PinkuNeesama MtViewCatherine
Posted
Helpful to my thyroid, I guess, it would be this mangosteen-made capsule and non-caffeinated coffee. They claim to help cure hypothyroidism. So far, that's the only one. I think healthier and balance diet is still the best treatment.
MtViewCatherine PinkuNeesama
Posted
Thanks. That's a new one for me. I'll check it out!
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