Unacceptable side effects of Levothyroxine

Yes I've had all the tests done both at the surgery and the hospital. The brand you mentioned made me extreme ill

Lisa,

A few of things occurred to me in reading your post. My reading on this subject has shown up that stress can cause the thyroid hormone to not be absorbed properly - this applies to both NDT and synthetic thyroxine. Instead of being converted to T3 the T4 is concerted to 'Reverse T3'. This is why in the patient information leaflet it says don't take if you have an adrenal gland problem (look up Cushing's disease and Adidisons disease).

Another is, did you start on 200mcg or did you start on a low dose and build the dose up? It takes time for your body's cells to adapt so they can absorb the T4 (again this applies to both NDT and synthetic thyroxine). This also applies when increasing or decreasing a dose. I used to do a quarter of a 25mcg thyroxine tablet at a time every 2-3 days until I got up to the specified dose. Its OK to chop the tablets up.

So, if I were you, I would look up the symptoms of Addison's and Cushing's disease and go back to your doctor if you have the symptoms. Then I would look up Reverse T3 so you can validate for yourself what I've said. As your thyroid has been destroyed by RAU you MUST be on replacement hormone or you will die. I would also reduce my dose down to a level where I didn't get the side effects, then increase it very slowly until I got to a level that kept my hypothyroid symptoms at bay. Thyroxine has a half life of 7+ days, so stopping the dose for a few days until your overstimulation symptoms subside (7 days maximum) won't kill you, it would then give you a base that you could start increasing it from.

You do know that you need to take thyroxine on an empty stomach an hour before food, don't you? Food impairs the absorption of thyroid hormones. Also not to take medications containing iron or calcium until 4 hours afterwards.

Note I'm not a doctor, just someone who had had hypothyroidism for 28 years.

Hi Lisa, sorry you’re having such a difficult time. The truth is that thyroid treatment is generally inadequate at best and more often harmful because it never treats the root problem of the disease and most thyroid medications are man made, and do not perform the same as your body’s own thyroxin. This results in horrible side effects. Take back your power and be determined to find what works for you. You’ve been dealing with thyroid disease for what? Decades? I think that qualifies you to make your own decisions about what helps and what doesn’t. If it doesn’t work, move on to something that. I tried the darn Levo for two years and it didn’t work at any dose. It caused liver lesions, severe bone loss to the point that I was bedridden due to broken foot bones that were deterioration, as well as autoimmune pancreatitis. My healthcare network seems to be particularly ineffective, as the doctors are now suing the parent company because it doesn’t allow the doctors to actually treat patients- money before health and all. So I basically had to take all my test results and self diagnose and self treat. Once I stopped expecting the docs to “fix” it, I started healing myself.

 I’ve been in several minor car wrecks, and following each, needed to increase my thyroid medication. 

I did some research on this and found there is a link between whiplash and hypothyroid disease. In addition, whiplash can cause symptoms similar to chronic fatigue. 

You’re right about the high doses of thyroid meds trashing your body. They nearly killed me. I finally went off and now take essential amino acids.

My mother had thyroid surgery and she takes ThyroGold and essential amino acids- she’s doing quite well with these.

I’ve tried pretty much everything I could for the damn thyroid disease. The amino acids are hands down the best single thing. Other not so common but very helpful things are boron supplements, liquid chlorophyll supplement (made from mulberry leaves),  and liver and colon cleansing.

Barbara is very knowledgeable and has some helpful input in her post.

Good luck and I hope you’re feeling better soon.

Catherine

  

Thank you so much for responding!!  Thank you for that 'dose of power'!!  LOL I shall use it wisely!! 

The doctor took my blood, then looked at the results, and 150 is what she put on first.  My doc told me that she would gradually move me up to what she called as the 'highest dose' (I now know it's 300 mcg, not 200 mcg).  I have been on 200 mcg for a year. 

I am exhausted (yes, I know I'm up late, I will be sleeping soon) so much of the time.  I do take that pill on an empty stomach - it seems my health has just gone downhill from there.  I did look up  the ingredients, and oh boy, it doesn't look good.  

Thank you for the tips on Addison's and Cushing's Disease!

When I did see the ingredients for levothyroxine, I decided right then and there to stop taking it (Saturday night, USA - not sure if you are in England, time difference).  I will be making a call later today and set up an appointment.  I will also be looking into more natural alternatives (it seems almost everything I am allergic to has a synthetic component to it, ugh).

I was diagnosed with hyper first (crazy heart issues) when I was 15 (1985), developed Graves at 18 (1988), and have bounced around between hyper and hypo for years, then finally treated for Graves in 2005.  What a joy this has been (sarcasm) 

Thank you for your help, Barbara!!

Rock on, Rosie! Get yourself some essential amino acid complex, phenylalanine and ThyroGold. All non prescription. You’ll feel better the longer you’re off this horrible medication. Get yourself to an acupuncturist to help you recover faster.

Also the latest gift from the backlash of the levothyroxin is that I’ve had pancreatitis for a long time and didn’t know it, hence the horrible gut problems. Hard to tell what caused what anymore, but the Levo seems to have triggered and worsened a ton of stuff. I thought thyroid disease was horrible until I took the Levo- it’s the gift that keeps on giving... Just be aware of the symptoms of pancreatitis, such as belly bloat and others so you can change your diet if you run across this.

I feel your frustration loud and clear, been in this nightmare nearly 5 years. Came off levethyroxine 6 months ago because after a lot of soulful consideration  I recognized that I had been very well until the doctor prescribed this drug after a lab test. Thinking back what was frustrating is I didn't have any symptoms. I am reaching a conclusion that for many healthy mostly women this has been a linchpin  dx  to allow all hell to break loose on you. For those with very real thyroid problems and need treatment it can be hellish. Some people have the problem that it is not that their thyroid has stopped working, but "deiodainse" meaning that they don't have the iodine needed to convert T4 to T3, so the TSH is virtually meaning less and the more levothyroxine you dump in your system the more toxic it becomes. Then there is the issue of consistent potency between batches of meds produced  and the drug labs that produce. It is all made in Mainland China and sold to distributors. Mylan is the biggest generic Distributor, but they don't make it! There are people who have done well on the drugs and that maybe  because they really need it  and T4 is what they needed and have been blessed with consistency of potency. There was a study done at Rush University in 2016 by a Doctor Antonio Bianco that is worth looking at it explains a lot of the problems without  slamming people. Dr. Bianco  says people should be told that just because your TSH is at the current acceptable range it doesn't mean you will feel well. He says people should be told that their will be weight gain, depression, fatigue, or increased cholesterol for some. He says doctors need to depart from  the "easy to treat take a pill and you will be fine concept". He is right cause that is what I got  and any complaints ignored. Doctors sadly treat by lab tests and symptoms alone. The art of diagnosis has long gone many years. The problem is that a group of symptoms could be a number of things, but doctors don't practice like that any more or not many and as long as they have a treatment plan that fits their standard practice manual and it fits into billable codes it matters not if it is indigestion or a heart attack. I too am frustrated. It is a swamp out there and God love you if you are lucky enough to have the correct diagnosis and a consistent medication. Between prescription medication and OTC meds/ supplements there is a lot of fraud and some good.

Hi Lynn,

Good job dumping a useless doc. I went through several in the same network after moving and found them all useless and truly a waste of time. The meds nearly killed me.

Thanks for the reference, I’ll check it out. You might want to add essential amino acid complex and phenylalanine to your regimen- I found these extremely helpful.

Hi MtViewCatherine,

​Thank you! I do hope you get the book and use it as a reference to your thyroid healing regimen. I make homemade veggie fruit smoothies every morning and I add a non-gmo hemp protein powder to it that has all of the essential amino acids which also includes phenylalanine. Since reading the book I have suggested I also have added a few more herbal supplements that are supposed to help with the healing process. Good luck and thank you for your suggestions.

I found the smoothies to be super helpful in the past. I always feel great on them.

They are super helpful. I also started taking Raw Thyroid and it makes me feel better as well, it's Natural Sources Raw Thyroid. 

How is raw thyroid different from dedicated?

Since my doctor I'm firing will only prescribe levthyroxin and will only do tsh. I have given up on doctors one because I have no health insurance and pay out of pocket and two because I've always done natural healing all of my life I went to my local Vitamin Shoppe and looked through all of the thyroid supplements and came across Natural Thyroid by Natural Sources. It contains Thyroid Tissue?, Adrenal Tissue?, Pituitary Tissue, Thymus Tissue,  Spleen Tissue, and Kelp. 

PRODUCT LABELRaw* Thyroid Glandular Concentrate with Synergistic Complex

Raw tissue concentrates imported from New Zealand are made from toxin-free lyophilized glands from animals grazed on rangeland free of pesticides, growth hormones, antibiotics or chemical additives.

Whole Raw tissue concentrated from bovine sources specially processed (Freeze-dried) at or below -5 degree C to preserve natural occurring vitamins, enzymes, nucleotides, lipoproteins and all other cellular components.

This natural product is made without sugar, starch, preservatives, artificial colors or flavorings and contains no corn, wheat, yeast, soy or milk derivatives.

I decided to give this a try in place of something I'll never get from a doctor.

Fantastic!

Keep us posted on how you do.

This product sounds very similar to ThyroGold!

I sure will keep you posted. I started it a few days ago so in about a month I'll tell you how I'm feeling and what I notice as far as change to my body.