Unacceptable side effects of Levothyroxine

Hello Ryan- YES!!!! I have heard of the synthetic working ok for some people, however, for most people, this sh*t just doesn't work and seems to do a good job spiking the bloodwork numbers, causes severe autoimmune disease and does not improve thyroid conditions. For the year I was on the levothyroxin, my thyroid cyst tripled in size (it had been stable for years), I went from a size 4 to a size 12, hair loss, severe water rentention, kidney problems, exhaustion, severe migraines. I was unable to function and was in so much pain from muscle and joint problems that I could hardly move.

FYI- the thyroid meds will initially spike thyroid levels, so you don't want to test before three months, as they take that long to settle out. The difficulty is that the doctors don't want to increase the dose without testing, even when your body is telling you it's low. Then the early testing shows higher values than they realy are, so the doctors don't want to increase it. With this methiod, you'll spend years getting the dose right. This translates to years of lost quality of life. So you need a doctor who will do a clinical exam. If the body temeperature is significantly below the normal 98.6 degrees F, and the fingers are colder than the palms of the hand, cold extremities, etc, those indicate too low. Of course hair falling out can indicate too low as well, but doctors sometimes think the hair falling out can be caused by it being too high. 

 For me,  the levothyroxin exaccerbated all the symptoms and added more until I couldn't tell what was what. I've been off it now for 6 mopnths and after cleansing over the holidays, I'm finally starting to feel like myself again. You can see, I take this very seriously, as it appears it takes a long time to get this horrible levothyroxin out of the system, and I was down for the whole year and a half while I was taking it.

Also recognize that thyroid disese is an autoimmune disease and keep this in mind when making choices so that her immune system doesn't get more aggrivated than it already is.

Here's the recipe that worked for me:

1) Switch to Natural Dessicated Thyroid. I use a compounded to avoid any unnecessary additives like wheat, corn, dairy and dyes. All of these additive aggrivate an already irritated immune system. If your doctor hesitates or doesn't want to switch, get another doctor. Every day that the thyroid meds aren't working is another day the body is wearing down unnecessarily fast.

2) Clean up your diet. Go completely gluten-free, as well as organic. Best to only prepare your own food because wheat is in everything. The laws in the US that allow things to be labeled gluten-free, still allow trace amounts, which is enough to trigger autoimmune disease.  In this case even a little gluten is not OK. Gluten triggers an autoimmune response that attacks the stomach and intestines as well as the thyroid in particular, but to a lesser extent, other tissues. Notice all thyroid disease is caused by either Hahimoto's or Grave's disease, both autoimmune.

3) Get her to a good acupuncturist. Preferably someone trained in the Orient. They can treat the thyroid and the whole body so it doesn't continue the downward spiral, while you're getting the meds and diet right.

4) Stomach and intestime issues often accompany thryoid disease. Fresh, organic juice each day is a source of nutrition that is easily digested and absorbed.

5) Supplement boron. This is a naturally occuring trace mineral, for which there currently is no recommended intake (in the US) This is typical, as historicaly, cases of low trace minerals have to be extensively studied and widespread illness due to large population lack before there is a recommendation made for minerals. Boron supplementation can reduce thyroid cysts. You can buy the chelated or make a dilution yourself with borax. If you aren't comfortable making and drinking your own dilution (you don't want to take too much!), make it easy on yourself and use the chelated capsules.

6) Cleanse. When the thyroid is low, all the body functions slow down, including liver elimination and waste elimination in general. So build-up of toxins happens very quickly and will exaccerbate health issues, food sensitivities, etc. I use a liver/glabladder cleanse - cheap, easy, fast but need to be strong enough to tolerate. I also use a colon cleanse with psyllium- there are a million of them out there for various proces, or you can go really cheap and buy your own ingredients.

Hope that helps. I guess it sounds like a lot, but if thyroid disease has gotten too far, you may need these solutions, or may need them at a later date. Hopefully not. They are healthy things to do anyway.

Good luck and I hope she feels better soon!

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No worries. I didn't stop taking meds, just switched to a prescription natural dessicated thyroid (NDT). This is much better and doesn't trigger the auto immune symptoms you're talking about that causes the joint swelling. It's been about six months since I switched and I'm finally starting to feel like myself again! You should have this available in the UK, as it is a pretty standard treatment in any country.

Good luck!

Hi there....

As I stated I was on Levothyroxine for 7 months  it was a nightmare for me. I went off of it and am very happy I did. I would love to see other people off of this that experience the same symptoms as me. I am now on Armour and doing real good on it. I have less water retention and have lost weight. I would never go back on levo.....I alos am on hormone replacement therapy at the same time. In a woman when they lose estrogen and progesterone it is detrimental to the thyroid. I am getting back to normal with all of this. My levels are returning to normal. I am having less constipation and finally getting relief and I needed hormone replacement therapy also. So I just happen to have been blessed with a doctor that would give me hormone replacement therapy along with the armour. Low levels of estrogen and progesterone....and DHEAS and testosterone can really cause so many symptoms. I am doing a compound cream for hormine replacement and the armour.....I can say it is working for me....I have good energy and less pain also.....I am thrilled.....I had a metobilic panel done and my doctor is giving me natural meds to get everything up to the level they need to be at. So that naturally means less symptoms. Plus I am on a great regime of vitamins and minerals....Good luck to you and everyone...I am praying for all of you cause I know the pain of this disease......I heard of it but did not know how bad it could be until I got it......I am hoping my diabetes will be easier to manage also when everything is normal including my hormone replacement levels.  I am on the right track after a year......yippee!!!!!!

Yes, the levo has many side effects. I'm pretty sure it also messes with all the other hormones because my cycle was also all wonky while I was on the Levo. It would seem some people tolerate the levo fine, though I've never met one. For those who don't, it's a nightmare. My guess is this med binds more strongly to receptors than the natural, so that of course shuts down the whole system, and gives misleading results in blood tests. I've been off it since August, but still was holding onto a lot of weight. I did a massive cleanse over the holidays and that seemed to get the stuff out of my system, so I'm feeling more like myself and will follow up with another cleanse this month to try and get the rest out. After the cleanse, I dropped about 12 pounds (1 stone), and seems to be continuing now.

Be sure you're getting some sort of natural thyroid medication. You can get a Natural Dessicated Thyroid by prescription that's very concentrated, or you can order it in a natural form online. But do something because it's very harmful to your body if you don't have enough thyroxin.

It sounds like you may not have server thyroid disease, in which case,  you may be able to do some holistic treatments to try and recover...  You can try some other natural treatments- acupuncture, herbs, supplement boron, cleansing, and abosultely go completely gluten-free- and see if your thyroid starts to recover some. The gluten causes an autoimmune response and the body attacks the thyroid... Hashimoto's and Grave's are the causes of thyroid disease and both are autoimmune. So the gluten elimination is really key. If you want to go the natural route, you have to be extremely diligent and disciplined, as there's wheat in everything. No processed foods or eating out for a while.  Most people can't stick with the discipline, so they don;t even have a chance. Hence the low recovery rate for thyroid disease.

If this regimine doesn't really make a substantial difference in three months, you really should make sure you have some sort of natural thyroxin supplement. I use a prescription NDT so as to avoid any addded allergens that are typically found in meds.

Hope that helps. At least you have some choices and maybe I've saved you some trouble and long hours of research.

Catherine

I have been blindly accepting levothyroxine's side effects for years...until I accidently went off of it for two weeks.

I don't suggest this was the best thing to do...but if I hadn't , I would not have caught your posts.

In two weeks, I lost weight, my ankles weren't swollen, I got some decent sleep, and so on...

Then i took my levo today and ugh...i felt aweful. Depleted of all energy. My stomach distended again. I became swollen.

I searched online for answers and found yours and other educational eye-opening posts.

I am calling my doctor tomorrow.

I have lost most of my hair, am 100 pounds overweight, and I am not living like this anymore.

My only fear is sounding like a hypochondriac and not being taken seriously.

Can u call my doctor for me? Ha ha ha

Thanks for the great posts, everyone.

Hello Edgar- Wow! Great post! Sounds like you really know your stuff!

The post was recent. Not sure why it's showing up as last year when it was posted yesterday.

You're right on with everything! I've had severe liver and gallbladder problems, various bouts with high cholesterol, that I know are due completely to the hypothyroidism. The cholesterol in particular is a huge indicator of hypothyroidism for me, as it's normally very low. If I see a spikem it tells me that things are really off! This is helpful because by the time the cholesterol is crazy high, the thyroid is so low I can't think straight. So it's like, oh right, it's low again. Thanks for the reassurance on that. The high cholesterol is sort of a big deal, but more because it's an indicator and shows that the body also isn't making the proper hormones it needs... As when the thyroid isn't working propery, my whole hormone system tanks. Of course women are much more sensitive to this than men, because it throws off our whole system.

Of course the NDT is a must. I've become my own expert at natural therapies and have treated all the additional problems with herbs, accupuncture, cleanses (especially liver cleanses!!!) and food elimination.   Better alternatives to western medicine's harmful, toxic drugs or surgery used to treat many of the debilitating problems arising from low thyroid.

Everyone I know who has tried the synthetic has reacted badly to it. Not only do the low thyroid symptoms continue, but it seems to trigger the immunee system to fibromialgia type symptoms- geberally all over pain. I'm sure this medication must work for some people. I just have never met one. I think I saw a post once here where the woman siad it was working for her, but she didn't seem to know the difference between the meds, so I wasn't sure if she even know what she was taking.

It sounds like from your post, that the thyroid meds don't cause heart problems. Of course the doctors are totally freaked out about prescrivbing the meds because tehre is a huge belief that the meds cause heart problems if too high. My sense is that the low thyroid is far more harmful to the heart than overmedication and that the heart problems may well be completely due to low thyroid, rather than, as they think, caused by the meds... It may be that the cpmlete manifestation of the heart problems take years and don't show up until after the patient has gotten thyroid meds, but by then the damage is alreasy done... ticking time bomb, eventually gets linked to the meds coincidentally. What do you think?

I'm asking because I have had several eastern doctors tell me that I have heart problems, though nothing shows up with the eeg, ekg, electrocariogram thing, whatever they call it now.

I read that as much as 80% of the T4 to T3 conversion happens in the GI tract and the liver, but you talked more about the pituitary and hypothalamus.

I've felt that the stomach problems I've had may have contributed to the downward spiral, and improved GI health seems to improve everything.

It's all related. From what you say, I have had the conversion problem, because my physical blood tests have always shown normal TSH (well, up until my thyroid seemed to completely stop working and then it was slightly elevated) ... although, my body temperature has been more than 2 degrees (F) low since my teens. So it was low my whole life. It wasn't until the thyroid felt like it completely shut down that I realized I needed the meds. Even then, it took over two years to get them because of course the cholesterol was high, the hormones were crashed, and I had severe stomach problems, so they kept sending me to the gyno.  I had to advocate (the meds) for myself and find alternative treatments to get me through until I got the meds, and then to help the body recover from the degredation. The unfortunate thing is the long lasting effects of the degredation of the body caused by the low thyriod.  The levothyroxin came into play leter when I switched doctors, and that really messed things up even more. Because the real problem was that the NDT was too low, and they should have just increased the dosage, but I had just switched doctors and she really pushed the levo against my better judgement.

Thanks so much for your encouragement and insight! It's been very helpful!

Catherine

Hi....thank you for your reponse......I had to take myself off of levothyroxine due to the side effects of it. The dellivery system that the thyroid was made with was detrimental to my system. I also had to take myself off of Lantus and novolog to due the same things. I was off of levothyroxine and took novolog and was bedridden..I seem to have an alergic reaction to some of these medications. When I tried to tell my GP and my endo that these meds were affecting me they refused to listen and would not take me off of the levothyroxine. The endo told me I should look for a naturalistic doctor and I have. He took me right away off of the levo and put me on armour..I have been on that for alomost two months and  I am losing weight again and feeling good. I am not there yet fully but feeling so much better like my quality of life is better. As for my diabetes med.....I am now on NPH insulin...My doctor told me that it is the chemicals they make the levo and some diabetes meds with tht make it not good for people. Getting doctors to actually listen to a patient is what is so hard. It is like they tend to think in one form...I now have a different GP and she is a doctor who does not believe in naturalistic docs and she said Armour is ok but she does not want nothing to do with that medicine......She did tell me that it is the chemicals that interfer with people. Not everyone is the same makeup and certain chemicals are not good for everyone. After three diabetes meds I finally found one I can take that will regulate my sugars....thank you.....

Thanks for sharing your story. I also have the whole TSH that doesn't indicate, so I have to always get the T4 and T3 levels checked. Also found it better when blood levels on the very top end of normal range. Not sure why that is. I had horrible results with the levo. I had to keep increasing the dose, but even when the blood levels were at a good range, I felt horrible on the levo. I went from a stable size 4 to a size 10. What it felt like was it showed up in the bloodwork, but didn't feel like it was doing anything to actually fix the low thyroid problem in the body. I eventually switched to a different med, but it's taken months to even start to feel like myself and the hair feeling like straw and thinning is still horrible.

I have nbever been checked for hypopituitary, though suspect that's part of the problem for me. How do did you get diagnosed? Is there anything to be done for the hypopituitary?

 

Hi,all of my hormonal problems started with Cushings disease,caused by a benign tumour on the pituitary.In removing the tumour,the pituitary now hardly does any work at all.So it's steroids to keep me alive,and other replacement hormones to do the work the pituitary no longer does.My Cushings was rare and difficult to diagnose.That was 18 years ago.