Unacceptable side effects of Levothyroxine

Hi,if you don't get a call soon,I'd ring the chemist where you got them to ask if these feelings are usual,especially as the weekend is approaching.Good luck.

Oh dear. Sorry you're having such an awful time of it. When you first start taking the meds, it takes a while for your body to adjust to it, which is why you can't really rely on bloodwork until after you've been on the meds for about three months. The symptoms you're experiencing can be either low or high thyroid, as the symptoms are similar for both- I'm referring to the anxiety, panic atacks, low grade contant headaches and heart stuff. SInce your TSH was so high, you may be having initial high symptoms that will level out as your body adjusts. However, severe migraines and dizziness are not part of thyroid symptoms. I'm no fan of the levothyrioxin, as this is a synthetic that didn't work for me at all, and I switched to a compounded Natural Dessicated Thyroid presecription to avoid reactions with extraneous ingredients. For me the NDT works much better, but my pathology is different, (as my TSH doesn't spike at all and seems to be completely out of the loop).

Your TSH being extremely high indicates you really need thyroid meds! So don't give up.

The dizziness and nausea could be due to an ear infection, so rule that out. Keep a log of the times you take your meds and the symptoms y ou're having. Doctors like to let you go for at least three weeks before considering changing anything. I know this is ridiculous, because in my case on the levothyroxin, I couldn't move and had headaches so bad I feared a seizure.

My recommendation is to educate yourself and read as much as possible about thyroid disease because it is very serious!

I can give you a list of the things that have been most helpful to me over the years. Basically, if you have cysts in addition to the low thyroid (most people do) you're on track for thyroidectomy. So be your best friend and do the reasearch for best alternatives. The meds are vital. So you prettty much need to find one that works.

The first step because you have a history of being sensitive to meds is to call your chemist and find out exactly what you're taking and what added ingredients the meds may contain. The second step is to call your doctor and have a new prescription written for a compounded medication that does not contain allergens and dyes. If you have a levo that is free of allergens and you still have problems, you'll most likely need to switch to a Natural Dessicated Thyroid prescription. You can save yourself the trouble and switch to the natural now, or you can try with the Levo and see if it might work for you. I had so many problems with the levo that I'm still detoxing from the stuff and trying to lose the 40 pounds I gained while on it, even thoguh I've been off it for nearly 6 months.  It also threw off all my hormones, which is another job to get them back on track. So you may want to try and make some sort of prediction as to whether your body will adjust to the levo and you want to try and stick with it, or whether you want to go to the natural and see if that feels better for  you.

The other thing you're dealing with is that your TSH was super high, which means your thyroid is very low and you'll probably need a fairly high dose of the meds. Unfortunately the thyroid meds are really difficult to regulate. So at the dosage you're at of 25mcg, it will take you years to get up to the proper dose, because they like to increase it by 12.5-25mcg each time, then wait three months to check the blood levels, which takes forever!  Given your sensitivity to meds and the fact that you're looking at the likeliehood of a very high dose, in which case, side effects would be compunded (the more meds, the more the side effects), you may want to make an effort to switch to the natural now rather than risk having to switch later.

There are other things that are helpful:

acupuncture (this will help keep the body balanced while you're figuring out the meds amnd a good one can actually shrink the cycts), -go gluten-free (this is huge!), 

-take supplements to assure you're getting good nutrition, especially trace minerals and boron. 

-If you've had neck injuries in the past, this seems to also be related to thyroid disease, so have a good chiropractor on your team.

-Keep your diet clean (organic, minimal grains, no wheat, rye or barley),

- keep the weight off as best you can. It's really difficult with the thyroid disease to stablize your weight, but the extra weight just compounds the problems.

- take realy good care of your stomach and intestines- thyroid disease seems to be paired with both heart and stomach discorders.

Hope that helps! You can do a lot of things to help yourself in this process, it's just about finding good information.

Good luck!

Catherine

I talked to the pharmacist about it and suggested that it may be too strong a dose but that I needed to talk to my doctor about it. When I mentioned it was only 25mcg they told me to definitely talk to my doctor. I'm wondering that maybe because my TSH is slightly elevated that when I took the levo that it was too much for it, even if its only 25mcg? Does anyone know of any natural vitamins or supplement that can help my thyroid besides the fact that I need to start exercising again?

Hello-Your TSH was really high, so I doubt the dosage is too high.

If you want to heal your thyroid naturally, it is possible to make some progress, though slowly, so you want to stick with the thyroid medication now because the body will degrade without it. Thyroid controls the metabolism of your entire body so without proper levels, the body's aging process accellerates.

Thyroid disease is caused by Hashimoto's or Grave's disease. Both are autoimmune. Gluten protein, found in wheat, rye and barley are believed to be linked to thyroid autoimmune disease, so most natural practitioners recommend going completely gluten-free for all thyroid issues.

For supplements, You have to be cautious because you don't want to overtax your already irritated system. Iodine/idodide combo is helpful, but can sometimes cause irritation to the system.  I tried this iodine/iodide and have found it to be helpful sometimes and to cause irritation other times. Liquid chlorophyll helps with the tiredness and is a  great source of copper- it's natural so you don't have to worry about taking too much. Other trace minerals, selenium, zinc, boron and magnesiuim are also good.

Paired with the thyroid problem, I had severe stomoach problems and found the gluten-free diet to be invaluable. But since my stomache was so messed up from years of eating wheat, I take a mineral and vitamin supplement, I also cleanse regularly because the liver can become sluggish and toxins build up. So I do both colon and liver cleanses. Both can be done inexpensively and with natural products.

Unfortunately most people don't go the natural route with thyroid disease because there isn't any way go completely natural AND, thyroid recovery is extremely difficult, hence the typical protocol of removing it when a cyst gets too large. They generally remove the whole side of the thyroid that has the cyst and not just the cyst. They test for cancer while doing the surgery and if there'[s any sign, they remove the entire thyroid. Anyway, my docor offered to remove my thyroid and explained that would be the protocol.

I went throguh heck with the meds and am better with the prescription Natural Dessicated Thyroid. But along with the cleansing and supplements, I go to weekly accupuncture, which has managed to reduce the size of the cyst.

I was so sick after a year and a half on the levo (while on the levo, my thyroid cyst more than doubled in size after ahving been stable for over ten years) that even after being off it for six months (I switched to a prescription NDT), I'm nearly to the point where I can exercise regularly again.

Anyway, those are the things that were most helpful to me in my pursuit of a natural approach. It's a ton of work, but I feel rewarded by the prospect that I may be able to avoid surgery and the after affects of that.

Good luck and I hope it helps!

Hi Jan,

Thanks for sharing!!  Your story is interesting because of the long history of success with the medication.  The fact that you've been taking the levothyroxin for decades without difficulty is helpful to know. Also the fact about combining supplements with it.

Here's my question: Did you ever find out what was causing the the numbness to beging with? Do you feel it was the Levo, or something else?

Do you feel all the additional symptoms are due to the interaction between the meds and supplements, or is it possible the levo formulation has changed after all these years?

I'm asking because I was on the levo for a year and a half and it was really horrible. And I know that this medication has been in use for decades, yet I've never met anyone who was able to take it with success.

I hope you're feeling better soon. For the tiredness I found that refrigerated liquid chlorophyll works great but I don't know how that would be with the Levo. Turmeric helps with inflamation and seems to have no side effects.

Would love to hear more of your story!

Catherine

Hi Catherine, in reply to your question: Did you ever find out what was causing the the numbness to begin with? Yes, I did.

     I went to a neurologist for the numb feeling in my legs (later learned it was from caffeine reaction to levothyroxine although my neurologist didn't know that. (I had suffered other issues with caffeine previously, so I left it off and the leg numbness went away, but that was after I saw the neurologist.) He put me on Alpha Lipoic Acid along with a regiment of B vitamins for the numbness. Within ten days after taking it, my toes became completely numb. The numbness worked up into my feet, ankles, legs, thighs, hips and back. I lost muscle tone. I went to doctors, even went back to the neurologist who gave me no help.

      I suffered seven months before I went online and started doing research on drug interactions with Levothyroxine.That is how I discovered that Alpha Lipoic Acid and Levothyroxine interacted negatively. Since I've been off Alpha Lipoic Acid for about 26 days--as well as the caffeine and other foods & drugs that interact with it, most of my symptoms have disappeared---all except my numb toes and the limp (although they, too, are slightly better.) There may be too much cell damage for them to heal completely, but I'm praying for a full recovery.   

O-M-G!!!!! Thank you so much!!! It never occured to me that caffeine could have an interaction with the meds!  This is super important snce most of us who are thyroid medication, aldo self medicate to some extent with what I call the "caffeine-sugar-chocolate merry-go-rouond"! Wow! Thank!

Catherine

Hehe, yeah, caffeine is one of those things I gave up since being diagnosed with hypothyroidism 2 weeks ago. I used to be so dependent on it because it has always been the ritual of a cup of coffee or latte in the morning and I'm good for the rest of the day. Now I've cut it completely out, I try to eat organics or grass fed beef/chicken, gluten free. I'm sure not everything I've been eating isn't completely gluten free but I try to have at least something in there that's gluten free lol. I also cut out sugars, milk, pretty much all the things I enjoy LOL but I'm hoping it'll be worth it when I get my blood work in 4 weeks. My doctor switched me over to a low dose of Thyroid (armor) because the levo was really kicking my butt, making me feel crappy all day. I hope you and everyone else is doing well on here, or at least trying to manage this darn thing.

Here are the list of foods, drinks and drugs I've found that can either raise or lower the dosage of levothyroxine: coffee, tea, chocolate, soy products, dairy products (I use powdered milk for cereal), antacids (should be taken 4 hours after taking levothyroxin---as should calcium tablets), fiber (such as used to aid in bowel movement---the interaction with levothyroxine can cause constipation rather than relieve it.) Ferrous sulfate iron supplements, & gluten, Alpha lipoic Acid.

There probably are others I haven't discovered yet, but I think my worse enemies were caffeine and Alpha Lipoic Acid. My face started turning yellow with jaundice, my kidneys were acting up and I had to run to the bathroom every few minutes.  (Blood work for my liver and my red blood platelets came back negative on blood test.)

    My best advice to anyone is listen to your body. Keep a journal of what you eat, the time, and any reactions you have & the time. Over a period of time you might begin to see a pattern that can lead you to solutions.

    I have been to numerous doctors and none were able to diagnose my condition; thus, I felt if I didn't take charge of my own health, I was heading for disaster. I am an avid researcher on the internet concerning topics related to my health. It has helped me tremendously in understanding my thyroid disease and enabled me to determine and give up foods, drink, and drugs that interact negatively and interfere with my medicine, Levothyroxine.

 

Hi sparkymcfly,using your word,I feel crappy all day.I have so many symptoms at the moment,which seem to have become worse with my Levothyroxine increase.However,my biggest interaction problems are with when to take all my different medications in relation to each other.I have calcium tablets which should be taken twice a day,but away from Levo.I should take Levo on an empty stomach,which is also when I need to take my steroids in the morning.My steroids keep me alive.I tried Levo at night,but felt strange and dizzy.My Levo affects my Warfarin level.I take Fibogel,which you said should be away from Levo.I also take 5 other daily medications,plus 2 regular but not daily ones.Difficult to know how to take them best.

Hi there also Goitrogenic which can also function like antithyroid drug and actually slow down the thyroid. Goitrogens are able to disrupt the normal function of your thyroid function by inhibiting the body's ability to use iodine, block the process by which iodine becomes the thyroid hormones thyroxine (T4) and Triiodothyronine (T3),inhibit the actual secretion of the they rood hormone and disrupt the peripheral conversion of T4 to T3 foods such as Broccoli, Cauliflower, Cabbage, Sprouts, Sweet potatoe, Kale, Cassava, Broccolini, Bok Choy, Collards, daikon, Millet, Kohlrabi, Mustard, Peaches, Radishes, Red radish, Spinach, Strawberries, Turnips, Watercress. Peanuts, Pine nuts. You did mention soy but for other readers Note that Soy falls into the general category of Goitrogens but beyond the goitrogenic properties, it has other abilities as a phytoestrogen to affect the thyroid function, whether you have a thyroid gland or not. Although some goitrogenic foods can be consumed in very small quantities once cooked the enzymes involved in the formation of goitrogenic material in plants can at least be partially destroyed by heat..but I find it better to avoid entirely. So Raw consumption is a profound NO! Be aware of juicing. I've been suffering with thyroid symptoms for 22 years but only got diagnosed a year ago.I'm currently on 250 mg of Levo and can honestly say this drug is ruining my life! Hope any of this helps and hope all well. 😊

Gill, oh honey, you're having a tough time! It's hard to know where to focus your energy. The thyroid disease, if not treated can trigger so many other problems. I've seen so many people get on the medical treadmill, and they end up with so many pills, most of which are contra-indicated to each other. It seems like your whole body needs to be treated with a wellness so lution, meaning things that will actually help you get better, rather than treating symptoms and causing more problems.

 Find yourself a good acupuncturist, herbalist and naturopath to help rebalance your body and find some treatments that are easier on your body. If nothing else, the acupuncture itself is a treatment and will help rebalance your system, if it's possible.

Good luck!

Catherine

Hi MtViewCatherine,unfortunately many will not touch me,even for massage,because of my DVT history.Having hypopituitarism and taking replacement steroids means I'm also susceptible to infection,and have difficulty fighting it.