Levothyroxine - Ended up in A&E

Hi Rosie, if you have hypothyroidism, you have either Hashimoto's or Grave's disease, since these two auto immune conditions are the cause of low thyroid.  Often, doctors aren't able to detect the autoimmune disease in either the blood test (antibody), or the ultrasound, which shows the cysts, but only if they're large enough to see.

i certainly am not arguing your point, just clarifying. And I must agree with you that this medication worsens thyroid disease because, 1) it doesn't work, and 2) it triggers the immune system, accelerating the Hashimoto's. In my case, I had a cyst that had remained the same size for 15 years, but while taking the levo, the cyst became so large that it nearly completely covered the entire love of my thyroid.

If you want to entertain yourself, check out an online search for Synthroid FDA approval, specifically newspaper articles. You might find this interesting, since Synthroid is the original/ brand name for levothyroxin. 

Im not surprised at all by the increase in your symptoms. The levo basically accelerated my thyroid disease.

So are you saying dont take Levo at all ? I stopped for 3 years and mine got worse .

Hi Anthony, I no longer take any of the prescription pharmaceutical meds. I've been on an OTC Bovine thyroid glandular, and that's helped me recover some from the horrible degradation caused by the levo. Also helpful are acupuncture, herbs, good diet and other natural treatments.

Hi Rosie

Thank you for your reply and sorry to hear you have been feeling so unwell.

That is some interesting news. So what, if anything has your GP done to help you?

 

Hi Catherine, what is OTC? How's does acupuncture help? How often should one go to sessions? Is NDT is it all natural? Does it work much better than the Levo? Should I ask my endo about it even though my thyroid has been remove? Is there any side effects? How long were you on Levo prior to prior to switching your usage? Can you tell me what to expect from Levo? What herbs are best to take?

Catherine, one other question I had to ask; is T3 T4 better? Can you tell me the difference between those and Levo? Any major side affects? Have you had your thyroid removed at all? If not, do you have goiters? I'm asking you many questions so I'll know what ask when I visit my endo this week. I feel awful on Levo88mcg, what other alternatives in meds do I have? What do you suggest? 

Thanks!

Just been to another GP in my practice this morning.   Told him when I first became ill one of the Doctors mentioned Thyroiditis, unfortunately this Doctor hasn't put this on my record.   The Doctor I saw this morning didn't understand anything really about Thyroid, went only on blood tests looked at mine and said 'well it was normal in Jan', then looked completely baffled when I told him at the time of that blood test I hadn't taken any medication for 4 weeks.   He is referring me back to the Endo, which is OK as at least the Endo was sympathetic and listened to what I was telling him.   I still think that it's been Hashimoto's Thyroiditis all the way through, after extensive research online re NHS sources it's the only condition that actually fits my symptoms.   I look forward to discussing this with the Endo when I eventually get to see him that is.   This Doctor this morning thought that NDT was some kind of herbal thing, that he would put me back onto Levothyroxin starting at 75 mg.   Um... think I'll talk to the Endo.  Lol, I have to laugh about this or I would go mad.

Hi Rosie, typical, ridiculous. I've even gotten this sort of nonsense from "experts". I've found its easier for me yo do the research myself. If I ask the doc, they either don't know or are misinformed, in which case, I wind up doing all the research anyway. At this point, I've been through it enough that I can pretty much tell if I get the dose right by my symptom levels. I've gone to an OTC ad am no longer a hostage to the medical system dishing out ineffective and poisonous "meds".

Think it's the only thing we can do given our circumstances.   The reliance on blood tests mean they just ignore everything that patients say to them about how they are feeling.   Maybe the Endo will be better, he was very sympathetic and OK with me going onto NDT, but whether he is well informed regarding Thyroid problems is another thing.  In the mean time I will carry on doing what feels right for me despite what the blood tests say.

Catherine does OTC works best for you? Is it the same as NDT? It's one of the matters than I'll run across my endo at my visit this week. I'm gonna research it to learn more. In the meantime, can you give me run down on it? How does work? What's the side effects? Is it a prescribed prescription? Does endos recommend it? Is it hard to find? Is it covered by most insurance companies, any side effects? Any weight gain? Joint or muscle pains?

Please forgive me if I'm being overbearing dear.  I'm trying learn as much as I possibility can due to the fact that I have to live with this decease for the remainder of my life. I want to get ahead of all of this so I won't end up in a bad state. I don't want Levo or any other drug to ruin on take over my life. I want to live happy & healthy for the rest of my days. Your comments and advice is greatly appreciated. Thx dear! 

Well im on day five of taking my levo pill at night and its working perfectly at least for now as theres just some things you can control at time but I think the other key is diet and NO GLUTEN ! and this is from a guy who hardly eats any leavened breads . Now blended with playing Hockey 3 times a week I feel alive again and Im not even hungry

anymore so I know Im controlling the thyroid and zero depression and im not tired all the time and I cant remember the last time I had 5 days in a row like this !

Hi Anthony, how is the Levo working for you at night? How many Mcgee are you taking? Any sweats or insomnia? Have you tried any other methods? How long have you been gluten free? Any weight gain? Head aches? Hair loss? I recently had my entire thyroid removed due to (4) huge goiters. I was hyper prior to my surgery, so I'm a newbie to this.

I've only been taking Levo 88mcg for approximately  (3) weeks and I feel awful, I haven't had a good nights rest since.  I haven't had any weight as of yet and I'm not anticipating it. However; I've had every other side affect that I can think of. Such as; hair boss, insomnia, brain fog, joint/ muscle pain, etc. I believe these meds are poison as Catherine mention. I must fine an alternaternative method. I woke up this morning at 3AM with throbbing head pains, only lasted a few minutes but I was miserable. This was the first time I've ever experienced this. I think Catherine bought an excellent point regarding OTC. I'm going to ask my endo about it amongst many other questions. Perhaps, it's a better method, with less side effects. If you have any good methods or procedures that you can share along please let me know. Thx so much!

Anthony, are you in the U.S or U.K? Are you seeing a Primary care doctor or Endocronologist for your thyroid disease? I'm in the U.S myself. There's tons of good endocronocrinologists here. I'm seeing one of the top specialist here my city- Chicago. You may want to search around and find a very good endocrinologist in your area. I'm doing as much research as I possibility can to overcome my side affects. I will visit every specialist in the city if I have to. Your help & advice is greatly appreciated.  Good luck to you & Good luck to us all!

Im in the USA I just moved from IL to NV and the dry weather has been very kind to me joint wise and I havent had my Thyroid tested in 4 months .

Im on 150 mcg but other than feeling lathergic and depressed I havent had any other horrible side effects many have mentioned here on all the years on been on it .

Im seeing a primary and a specialist who did a ultra sounds every year and it improved so much he changed it to every two years .

One thing I do l know is when I went off levo for 3 years from what the doctors say it got much worse and my Levo went from 75 to 150 mcg and the ultra sounds confirmed it so to anyone I would be careful just not taking it or see doctors for other options .

I also believe always being an active athelete even through the pain has saved my live as even in the bad times I did some weights , yoga ect as I have no other issues but a little weight on  my abs so I hope this helps and good luck also and hang tough .

Sadly I dont think Doctors have all the answers and as I get older I try and avoid the corrupt medical system that doesnt try to cure things but enable them . 

I know many are good and are needed for broken bones ect but many are bad and your just a number as they been trying to fuse my back for 15 years now and once you do that at least being a athelete your done and it only gets worse but keep looking and if they wont answer your questions move on and dont let them intimadate you !

Im Hypo , Levo at night is working out great and Im 5 days 100% GLUTEN FREE ! and I hate to be one of those gluten people but its really poison to me as it  messes me up and I dont feel sluggish or bloated anymore .

I mean I wasnt hardly eating and put on weight so I also avoid fake sugars , starch ect and try eat everything else in moderation.

Yes, Anthony, isn't it amazing that when you cut out the gluten completely, you feel so much better, you realize you don't ever want to risk gluten exposure again!

Yes, Anthony, this is also the conclusion I've come to. It's little more than a front for drug pushers, socially acceptable because we are literally born into this system. When you start to look, you realize that every test done is business science: or charts and graphs manipulated for marketing purposes. Medications have far more side effects than effectiveness.

Hi Anyhony, thx so much for responding. Your info was extremely helpful. Actually I'm hyper, I had my thyroid removed and my endo is trying to get me back to normal. I was put on Levo to get my thyroid level back in stride. I really didn't understand why I was put on Levo to when I was hyper. I spoke with my endo today and was told the OTC & NDT would not be a good fit for me, since its pig thyroid. I was also told he take a long time for the OTC adjust to my system. The same thing was said about the T3 & T4. So those options are out for me.

My prescription was changed today to synthoid 88mcg oppose to Levo 88mcg. So maybe that'll make me feel better as far as the side effects is concerned- so says my endo. I really think the Mcgee should've been lowered to 75mcg. Actually, I think that the 88mcg is a bit too strong forme. I'm experiencing bad side affects everyday all day. My endo never mebtioned exercise or healthy diet or other alternatives to help me feel better. Only meds! I'm learning the healthy eating & gluten free diet fron you guys. Sometimes I think that the doctors are being paid by the pharmcitical companies to administer this poison that really doesn't work. I am so miserable living with the horrible side affects and it's only been (3) week. 

Im elated that the gluten free diet works for you. I'll try it myself even though I haven't gained any weight. I still thinks it the healthiest way to go. I might try to take my meds at night to perhaps it'll help with the side affects. For you- keep,up,the good work. 

Im still considered hyper so I haven't gained any weight. Actually I've lost 2lbs since my surgery (2) weeks ago. I guess my body is trying to get adjusted to the meds period. I was told if I do not take the meds since I'm hyper that I will become hypo and I will be in very bad shape. So I'm forced to take this poison. Thx again for getting back to me. Good luck!

Why did you get off Levo for 3 years? Was it the doctors orders or did you decide to it on your own? Sounds a little dangerous to leave a med for 3 years. Did your levels improve before getting off of it? How long have you had the decease? Did you take any alternative meds while off Levo. I noticed you stated that your condition got worse. Why are you on so much Levo? Are your levels still low? Will the doctors ever  lower your dosage?  I heard the higher the dosage the worse you'll feel. 

So true. We are being marketed by the pharmaceutical companies. They really don't care about our well being at all.  Actually, I lived in Las Vegas 12 years ago, that's where I was dianosed with hyper. I'm a Chicago native and decided to move back many years. When I moved to Chicago my goiters grow even more. Perhaps I should've stayed in Las Vegas. 

I got off it because of insurance problems and the stuff never seemed to work for me anyways so I listen to my stupid ex wifes advice as I never really understood the thyroid and how dangerous that was .

No other meds other than some pain stuff and my levels havent changed in 3 years and the ultrasounds have been so good I only need to be checked ever two years now .

I have a high pain or tolerance level so if I ever had issues I probably havent noticed them other then the emotional stuff .

My Mcg increased because I was off it for three years but once again other than emotional issues I feel they meds havent done much for me other than helping my metabolisum BUT now with the no gluten and taking the pills at night I seem to be getting the full effect of the drug .

And when I say taking at night I dont think am or pm matters but with my nightime lifestyle it works perfectly .

Hi Catherine, could you contact me via inbox please. Need help on determining an alternative med besides Levo. I've sent you (3) inbox messages. Thank you. 

What sort of side effects are you experieinceing?

Hi Rosie, I'm experiencing; Hair loss, insomnia, fatigue, muscle & joint pain. No major headaches at this point but my head constantly feels like it's on fire. I'm on Levo 88mgc and it has taken its toll in a very bad way. I had a thyroidectomy (3) weeks ago due to 4 large goiters and RAI wasn't an option because they were so large. I really want off of the Levo because I feel horrible.  

I recently had a visit with my endo and she refuse to take me off of it.  However; she gave me a prescription for brand synthroid which I heard is the exact same. I inquired about the NDT & OTC and she basically refused to talk about it but stated it wasn't best for me because its pig thyroid. From what I've read that was administered prior to Levo. 

I also inquired inquired about T3 T4 she stated its very different to get the patient on the correct dosage. I've heard it's much better than Levo alone. Most patients states that they feel 100% better.  I'm just so frustrated with all of this. Seems as if I have no way out. What do you suggest? 

The problem we have is that the Doctors aren't aren't allowed either to prescribe or advise patients to go onto NDT, some like the one I saw last week don't know anything about NDT at even though it was used from 1892 to 1970 and by the NHS up to 1970.   There is a blanket ban on this as they don't want the added expense, although it isn't that expensive Levo woeks out to £2 per patient per month.   You can just ignore them find a private Doctor who will prescribe NDT and do it yourself.   That's what I had to do.  Thyroid UK has a list of Private GP's who will prescribe NDT and a list of Pharmacies where you can buy it on prescription.   I'm on ERFA 1 grain of ERFA is the same as 60 mg Levo if that's any help.

I'm so confused at this point, I have so much info but I don't know what to do with it. I would love to go natural but I frighten to do so because my Endo is totally against it. I can actually order OTC (natural) online. However; I would not know how to administer it properly due to the fact that I no longer have a thyroid.

The Levo isn't working for me, that's a given. All my a Endo says is give it a chance. I've read & heard so many horror stories to where I really don't want to give it a chance, I want out. More than likely I'm going to have to find another Endo in my city. Thx so much for you help dear. 

Doctors and Endo's aren't allowed to advocate or prescribe NDT, thankfully mine was fine with me using it but that was all.   I get ERFA which is made in Canada, 60mg is equivilent to 100 mg Levo if that's any help.

Bless u mt view Catherine for ur ifo. I have my throid removed ad hate hate hate synthroid and also hate unithroid. Had anxiety puffy face and feet and amxiety all terriable with those two meds. My new endo said she will keep switching me till we find one to work, but... I wld luv to know exactly what u take and has helped rid u of that anxiety palpatations etc.. what u use does it work for someone who has NO THYROID AT ALL ?

I know ur not a dr, I'm simply asking what YOU find from ur use of ur meds and what exactly u use.

I'm nervous to try anything not written threw a rx, but at this point I'm sick of the rx stuff and wld luv to know exactly what u use amd dosage so when I research it I know what worked for u. I'm sure other want this info from u too

I've been 2 yrs on synthroid with the worst 2 yrs of my life, I blamed it on my thymus enlarged needing to be removed but now that is removed 3 months ago, I narrowed it down to the synthroid ad now unithroid 2 hrs after taking omg I have such terriable let side effects, even at a super low dose of 25. Mcg.

I wld like to buy exactly what u r using and wld like to know what u find to be better from using it. How soon did u feel the better difference?

Bless u again, this forum has brought my mind to feeling like km not ceazy, that others have dealt with this amd I'm not alone, tk god!!!

Look forward to ur answer and rey. Hugs fellow patient if friend!