Unacceptable side effects of Levothyroxine

No, I was taken off all my blood pressure medicine 2 years ago and have not been put back on anything although I would not be surprised if I am as the swelling/fluid retention is something awful.  I cannot even put on my shoes my feel are so swollen!

Must drink one and a half litres a day ( including coffee) and above all, exercise. Exercise ( just fast walking, if nothing else) is really important for water retention.

 

Yes. I have never suffered from high blood pressure before my Hypothyroidism was diagnosed, but I had it checked a few months after my Levothyroxine dosage was increased to 75 micrograms and it was high. 

I had to have an ECG test done, which showed that my heart was beating too fast. After having another blood test I was told that my dosage needed to be increased again to 100 micrograms. I have to wait another month to find out how the new dose is affecting me.

For the 'not being ably to get shoes on' problem, try shoes from 'cosyfeet', an extra wide shoe stockist.

I have just posted asking if anyone has this problem as I am on Levo and have now been told I have high blood pressure.

Look on drugs.com, it can cause high blood presssure.

Yes. Even though I am on NDT. The big problem is that BP meds are bad news,  and they interfere with Thyroid meds. I excerise a ridiculous amount to keep things under control - also, you have to try to lose the weight that thyroid meds put on. It's a big struggle.

Following thyroidectomy. I am on 125mcg levo and my blood pressure has soared. My gp has prescribed a bp drug to bring it down. I didn't have this problem when taking T3 cytomel or any other side effects.

My consultant seems unconcerned. I am struggling with levothyroxine how have you coped?

 

Hi Supersound, Thanks for reaching out. So sorry for your difficulties.

First off, I coped by switching medications to a natural dessicated thyroid without any allergenic additives. If you look at the history of synthetic hormones, it is not pretty. Feel free to research the disasters of synthetic HRTs. For me,  I let my doctor convince me that levo would be a better choice, and I was sick for over two years from it. It took a year to get the dose "right" and another year to detox form it.

As for your condition... The answer is not simple. And if you scroll through the notes in this website you'll see that the medical profession is ill-equipped to deal with  thyroid disease. For this reason, I suggest you find a good endocrinologist. You may, as many of us have done, need to try several before you find a good one. My preference is for older doctors. I have also had excellent results with doctors trained in Eastern block countries.  Bottom line, is  you really have to shop around for good doctors. Thryoid disease is too important to mess around with.

Back to you... The answer is not simple... Thyroid levels affect BP. For example, hypothyroidism will cause BP to go extremely low. So if you are hyper thyroid, that could be the cause of the high BP.  However... its way more complicated than that.

You were on T3 cytomel, a T3 only synthetic (from what I can tell). Now you just switched to a T4 only synthetic. T4 converts to T3 in the cells of the body, and a large portion of the conversion happens in the liver and the gut. People with thyroid disease often have sluggish liver function and gut issues, which then sort of messes up the thyroid feedback loop. T3 is a much more powerful form of thyroxin, and lasts for only about 4 hours. The T4 is more stable, lasting about two weeks, but doesn't give as much energy. You can see how the T3 would work as a burst of energy, along with the adrenals and pancrease to balance the body metabolism through the day.

Back to you. You were on a T3, and switched to a T4. Both are synthetics, which I personally would never try again. That aside, the switching is forcing your body to go from a very readily available source (T3) to one that must be converted, to be fully effective. Since your thyroid has been removed, you need both T4 and T3, so T3 only is not an option (T3 cannot convert to T4, and only the thyroid makes T4). This is probably why they put you on the T4. There is no natural form of T4 only, so synthitic is the only option if you want T4 only. The natural forms contain both T3 and T4.

If you've had a thyroidectomy, you've had cancer? Cancer happens when your own immune system does not recognize sick cells. So, by definition you have immune disease. The gut and all mucus membranes in the body are part of your immune system, an in fact, the gut is a huge portion of the immune system. So, if you have immune dysfunction, you can pretty much assume the gut isn't working properly. If your gut isn't working, you may not be converting T4 to T3 properly. Without the T3, your adrenals have to pick up the slack for a lot more of your daily stress, and they can eventually become exhausted.

My guess is that you're in the early stages of adrenal exhaustion as the adrenals try to work wo keep up with things after switching the meds.  If your gut and liver are healthy, your body will eventually adjust and will convert the T4 meds to T3 in the body. I should also mention that radiation damages gut tissue, so if you've done radiation, you have double intestinal recovery to do.

Bottom line,,,  If it were me, I'd do the T4/T3 conmbination med  (natural) after cancer/thyroidectomy because your sytem likely isn't able to properly convert T4 to T3. You'll need to do a lot of immune system healing on your own, as doctors pretty much know nothing about this since they don't have a pill or an operation for healing the immune system. Keep in mind, you're dealing with a system that specializes in  two types of treatments: surgery, and pills.  So if you want anything else, you have to do a lot of himework.

Scroll through the notes in this site for a list of steps you can take towards thryoid "recovery". Print them out and hold onto them so you have them, when you're ready to deal with it. It is a very slow process. It takes years for the th yroid to become sick, and so, it takes years for recovery- with or  without your thyroid gland.

If you can't find the steps, I can send them to you in a private note.

Good luck and I hope you're feeling better soon!

Catherine

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Hello Thankyou for the info you are right to say I was diagnosed eventually with early thyroid cancer. There was no spread but surgeons insisted on completion thyroidectomy followed by low level radio iodine 131. While waiting for this I was put on cytomel T3 with no obvious side effects.

Since radiotherapy I was put on 150mcg of levothyroxine.

My system reacted violently against this with high blood pressure headaches insomnia. I. Am now on bp tablets to bring it down.

I have a 12 week wait to see an endo specialist. In the meantime my oncologist has dropped the levo to 75mcg and is building me up to 125mcg over this waiting time. He fee the body needs time and will adjust to the levo. Despite these changes the symptoms persist and I. Feel much worse than before this all began. It does feel like this drug may work better in people who have some thyroid function but is not suitable in its present form for those who have none. It's all very worrying but I just have to hope my liver will adjust and maybe the endorse can get it right.

Thanks for your help it nice to know I am not alone.

Hello again Supersound, Glad to help! I've struggled so much, I'm happy to try and save others the same grief.  Your feeling that the levo works better with people who have a functioning thyroid makes sense to me. I talk with people and share my experience with a lot of friends who also have thyroid disease. Of all the people I've spoken to, there were only two, for which the levo works. Both are only on a 25mg dose, and were asymptomatic, diagnosed solely based on their TSH blood tests. Both also, have no other medical conditions and are in excellent/peak physical condition. Since these ladies didn't know there was a problem to being with, I'm not sure they even notice a difference with the meds. For others, who need a very high dose, my feeling is that the levo side effects worsen as the dose increases. So my experience was that it was contraindicated for me because the high dose caused so many side effects. I also felt the Levo did not work for me at any dose. 

Try acupuncture for the elevated BP. The acupuncture will also help get your system back on track after all the yoyoing thyroxin. If you're premenopause, you'll want to get a hormone book because the low thyroid can cause other problems and the faster you get the body back on track, the better.

Have now got high blood pressure since taking thyroxine for abouta year.  The nurse etc just says take something for the blood pressure but I know it was far better before. Have so many problems since taking the thyroxine it is as though it is not really helping and maybe hindering me.

Hi Carmel, I'm on the other end of BP. When my thyroid was low, the BP was also dangerously low, and actually got as low as 85/50. So once I was on the thryoid meds, this improved as well. I couldn't tolerate the levothyroxin. It didn't work for me at any dose and just made me sick, so I'm on the Natural Dessicated Thyoid meds (NDT). BP has been normal  for a while now.

With all the yo-yoing while changing the meds and years to get them right, my system was on a downward spiral and I found acupuncture is extremely helpful. Like everyone, I have to pay for it myself and am not working due to the thyroid and related health problems. The acupuncture is so helpful, I gladly pay for it.

My feeling is that taking more and more meds to deal with each previous medication is not a solution because you can see the slippery slope this leads to, where you're spending all  your time taking meds... So try the acupuncture once a week for a month and see if you have any improvement. Like anything, there are good and not so good practitioners of all types. My preference is an acupuncturist trained in the orient. if you are short on funds, find a local acupuncture school that offers low priced treatments. I used the schoool clinics for years and was able to get excellent treatment. Good luck!

 

Excellent answer to supersound MVC. This is one I will be printing out and hanging on to. Thank you.

For anyone struggling with weight, try cutting out carbohydrates and living on fresh meat, fish and vegetables (not potatoes).  I've had to do this because of allergies and intolerances and the weight just fell off - particularly round the areas which I could never shift it from: stomach and thighs.

Thank you!

many have said on this post they can't get NDT or even that it's not available at present, could you please explain how where etc..you have been able to get it, and nhs or private dr. or endo are you here or america & couldn't we all refer to dr.david brownstein--thyroid health and the whole body actually esp.breasts and prostate require IODINE supplementation for health, i prefer tablets rather then liquid---better quality and dosage control. good luck to us all..most endos are clueless..

I'm in the US and was able to get the NDT. You basically have to "shop"   doctors. I've found the progressive ones or the real endocrinologists who really treat diabetes and thyroid disease seem to understand. Here's what I've done and what problems I ran into...

I initially got NDT from a very up-to-date private practice doctor who was fairly liberal with thyroid meds and used his own bloodwork ranges. However, I have a severe thyroid problem and he was uncomfortable increasing the medication to the point that it would be effective. I happened to also be going to a counselor while I was first diagnosed with thyroid problems and was advised by my counselor to "shop" doctors until I found one who would work with me. The counselor worked with a psychiatrist who had previous experience with thyroid disease and was aware that some people need a dose that looks higher in the bloodwork than normal.  The NDT seemed to work well for a while, but, back in 2011, 2012, the pharmacies kept running out and companies were "back ordered" for months. I had to borrow from friends and eventually found out which of my friends took thyroid meds... We've helped each other out over the years when one of us runs out.  I think some of this was that pharmacies weren't used to carrying the NDT. I tried Armour to start with, but they changed the formulation, adding a corn product, so I switched to Naturethroid...

I relocated, I was having difficulties with the dosage, and Ihad to get a new doctor near my new home. I let a stupid, right-out-of-med-school-skinny-young doctor advise me to switch to Synthroid. The Synthroid nearly killed me and the levoxyl and compounded  levothyroxin didn't work at any dose and I blew up like a balloon. I tried several endos in my network and they were all stupid, so I found a doctor when I went to the walkin clinic, a GP, who tried as best she could to help me manage, but she was uncomfortable with the NDT...  So I kept driving the 350 miles to my old endo when I was desperate.  He switched me back to Naturethroid. The Naturethroid helped some with the massive inflammation that happened with the synthroid, but didn't seem to work as well it did previously, so I tried WP because it dosen't contain any allergenic additives... a little better, but still not myself...  I finally tried an OTC and immediately felt better. I can only conclude that the manufacturers keep changing the formulations of the NDTs and some of that change was to cut the NDT with synthetic to solve the shortage. But that's just based on how I felt on the stuff.

Both my endo and my GP happend to have lived and trained in Eastern Block countries. My sense is that Americans a deep seeded Puritanism that makes us believe that we're to blame for being sick. Of course there are always exceptions, or maybe it was just random, but the doctors trained in other countries seem to actually listen to me when I tell them my symtoms. I even spent the massive amount of money to see the famouse and respected Paleo guy and without asking me what I was eating isnisted my problem was my diet. Blame blame blame. I was already eating a paleo diet, it helped some but wasn't the problem and this guy wasn't willing to look anywhere else.

You need a doctor who will actually listen to your symptoms. A doctor who does a physical exam, and feels your fingertips to see if they're colder than your hands. A doctor who asks you how you're feeling and listens and who knows what they're doing. If the doc puts you on meds and then tests and wants to lower the meds beofre three months even though you don't feel well, find another doctor, because prior to three months, the levels can still be high and will level out after the full three months. In other words, you should only be going to your doctor every 6 months unless there's a problem and you initiate the visit to fix the problem. The bloodwork should be done every three to six months unless you're having problems.

Also, medication isn't the same as your own thyroxin, so the doctor must be willing to be a little flexible withthe ranges. I always feel like there's the range that the lab shows on the bloodwork, and there's the range the doctor uses if that doesn't work. I don't know what thisother range is that my doctor uses. He just lets me know if it's too high above the normal range.

ok interesting-- so about the iodine... have you had 24 hr urine iodine loading test, to see if you are iodine deficient as that effects the thyroid big time, sky orig usa

Hello Sky- Yes. I had the iodine pee test. It showed normal. However, shortly after, I tried taking iodine/iodide supplements and found they also caused inflammation. This is typical in thyroid patients. So I took the iodine slowly and increased it over time. Eventually I found a kelp product that worked well. I think the natural iodine does help even if your levels test normal.

It could be anything causing a problem in the thyroid loop, which is tied into the entire endocrine system. With the low thyroid, by the time you get a diagnosis, it's difficult to find the weak link in the loop, so better to strengthen everything, but not to overdo it. Hence, I take the kelp but not every day.

Diet and digestive tract health also contribute greatly to thyroid health, so if you haven't looked into that yet, you may want to.

Hope that helps.

Catherine

Hello catherine, sky, this reply is just a general comment about Iiodine. My private endocrinologist cautioned against Iodine as it can be toxic to the thyroid, despite it being essential to the thyroid's correct operation. Hence it would be a good idea to look up the symptoms of iodine overdosing to ensure you recognize the symptoms if you get them.

most endos in UK don't understand iodine treatment--the difinitive man on iodine is dr. david brownstein an american top doc etc. he has fab you tube videos explaining all and even when it's not ok to supplement--but that are rare cases in deed, and the urine test which needs to be not just a urine test--but a 24 hour iodine loading test--where one swallows an iodine tablet and the ratios of excretion explains if one needs--but as most of us don't eat the amount of seafoods that the Japanese eat & they have the lowest breast cancer etc. in the world usually consuming 12mg daily--that's mg's not microgrms--worth listening to his talks and his iodine book is mega helpful   

most endos in UK don't understand iodine treatment--the difinitive man on iodine is dr. david brownstein an american top doc etc. he has fab you tube videos explaining all and even when it's not ok to supplement--but that are rare cases in deed, and the urine test which needs to be not just a urine test--but a 24 hour iodine loading test--where one swallows an iodine tablet and the ratios of excretion explains if one needs--but as most of us don't eat the amount of seafoods that the Japanese eat & they have the lowest breast cancer etc. in the world usually consuming 12mg daily--that's mg's not microgrms--worth listening to his talks and his iodine book is mega helpful   

Barbara, great point! I'll look into it!

Sky, I was mistaken, I didn't do a loading teat, just the 24 hour urin.  I look at iodine like any other supplement. You must have enough, or you'll have probelems paralelle to the degree of deficiency. However, too much is a waste of money and can strain the rest of the body and elimination systems. The recommended amounts are just that. There are some recommended optimals amounts, but in the end, you have to see what works for you. I certainly wouldn't expect iodine to solve a thyroid problem, yet without it, you will definately have a problem.

interesting. thank you. I'll have a look.

just a point the american "authority" bodies giving out reccomended doses are so off the mark, take potassium for example they are extremely low and dangerous same for magneisium and even some of the usa boards have just approved gm salmon--in monsantos back pocket so there are plenty of expert doctors alternative etc.who give correct doses of iodine ingestion rates -for folks who are exposed to chlorine bromine flouride etc.etc. in the states you have flouridated water your bread is mostly bromide,radiation exp. chlorine in the water supply not too mention gm'd nearly everything so proper supplementation of all the nutrients and esp. for our adrenals as we can't fix thyroid if adrenals are not up 2 par..  kelp is fine- if one is iodine sufficient --if it's not from polluted waters.. well my postings end here...it's dr. david brownstein that should be the guiding person on the iodine / thyroid issue etc. etc wish all of us optimal health, ps i am now on the full bone broth regime for full gut health- which of course is where it's all at esp. immune health.. ciao

Sky, you are dead right on all points. It is scary, you absolutely have to look out for yourself, and that extends to doctor's recommendations because they have little knowlege of what is going on.

No as yet only a blood test which I have been told by the endocrinologist are normal still my weight is still going up and I don't fee like I have any energy or interest in anything feeling lethargic nana 

Hi MtViewCatherine,

What's the name of the OTC thyroid med? I've been struggling for over a year with different Meds and vitamins and just can't feel good... At all. I'm always dizzy/off balance (as if on a boat). I have bad muscle/joint pain and zero energy. My levels are good but my symptoms are horrible. I've been to six different endos and they're all idiots I've been on ndt but I think I had an allergic reaction to them (Armour and Naturethroid)... You seem very knowledgeable in this subject. Any advise would be great! Thanks

Hi, I too had a bad reaction to NatureThroid. You could try the OTC bovine NDT I'm on. I'll pm you the name and where to get it from. Tpauk and the other main thyroid site arvise that NDT is started on a low dose then increased slowly to allow the body to get used to having T3. It worked for me.

Just a thought, it's worth getting tested for Lyme's disease. See the new discussion that Sayhitocaz has started today.

Hi Barbara,

I did get tested for Lymes disease among many other things (all negative). I was diagnosed with fibromyalgia (which I don't believe I have) and was put on meds for that which also have horrible side effects so I discontinued them. I've been to some of the best neurologist in California (Stanford) and they can't find anything wrong with me. I'm convinced all of my neurological symptoms are due to my hashimotos. I wish endos took us patients more seriously.. I feel like I'm going crazy sometimes. I'm 33 and was diagnosed in 2014 while pregnant. A year and a half later and I feel like I'm 80 years old..

YES! but i was diagnosed 16 years ago...BUT, every time i successfully lose weight, my blood pressure goes up and im over medicated at that point too...I guess when i lose weight, my med level needs adjusting...This never use to happen, but im seeing a bigger pic now...thing is doctors dont very often check blood pressure anymore...It was only checked, casue my thyroid t4 test was out of range....Im 59 now...

Wow, I definately feel similar symtoms. I had a thyroidectomy 3yrs ago and have not felt normal completely since! I get palps on and off and my endo says it is not due to the Levo, but I feel I still am not on right dosage. Even my cardiologist said she got palps since her endo switched her from Synthroid to Levo until he took it down to 88mcg per day. I take 100mcg Levo per day and feel better than I have in the past ,but still get these random Palps that make you feel miserable. I never had anything like this until diagnosed with HasHimotos and then had to have a Thyroidectomy and Radiation. Ugh this has been some crazy journey! Sending healing energy to all us Butterfly Warriors!

Hi Kristina, thanks for your post. Yes, the problems are thyroid and med related.

Appreciate your healing wishes!

Last winter I was feeling very miserable with the joint pain such that people would see me ' welling up' , one kind young man who we had often spoken to in our local bar said , you are clearly struggling with pain levels aren't you? He went on to say he had struggled with joint pain despite being only 26 since he had been a cage fighter! He recommended I take the natural supplement Msm on its own at the max dose of 3x 1500 a day and he even came in with a tub of the same the next day. He promised I would feel better within 3 days, some claim I thought but hey let's give it a go. What do you know, I started to feel a bit better after three days and by a week was practically dancing with joy! I finished the supply but forgot to reorder as they come from America and now 6 months later I am still pain free. I was initially a bit concerned that his suggested dose was x3 what was suggested on the pot but a little research confirmed this was ok and I will probably adopt a lower maintainable dose when fresh supplies come. Now the best bit, yes there's more, the side effects are positive! Your skin and hair positively glow after a couple of weeks and the stuff helps prevent allergies, I have not taken a single anti histamine since and my usually dry hair and skin does not itch but is radiant with health. Give it a try, very cheap but shop around online not go to the major shopping apps, I paid about 6-7 euros a pot only last week but some chafe up to £24 for the same brand! Good luck

Hello, I too am interested in the OTC you are taking and where it can purchased. Thank you

Yes, I had my thyroid removed 8 years ago and developed high bllod pressure after 12 years of levothyroxine. Also your cholesterol will increase in numbers as my experience back in three months no matter how I try to avoid all fatty and fried foods. The problem is what ever foods that will help decrease the number of your cholesterol that affects your levothyroxine absorption. 

What type of acupuncture do you have done?  What area of the body?

A friend of mine had gained weight and couldn't lose.  That is where I am.  I have low blood sugar, low blood pressure, have been borderline anemic, but not always, and my "normal" body temperature is never 98.6, but colder.  When I have a fever, I finally reach 98.6.  My husband, because of the weight gain, mostly, wants me to go to a endo. to get the levothyroxine to help me lose weight.  Considering I would have to take it for the rest of my life, I really am not looking forward to that.  We live in Mexico and as I am sure there natural hormones, I just don't know where to look.  There is acupuncture here, but I don't know where to start.

If you could tell me about your acupuncture experience, I'd appreciate it.  

Hello r49551, first off, I can assure you that levothyroxin does not help you lose weight, as I gained 40 pounds while on it, in spite of a very disciplined diet. So you may as well get an understanding that with thyroid disease comes yoyoing weight even with the best of circumstances.

Ive found the best acupuncturists train in Asia. The one I see now specializes in navel acupuncture. Really, the only way to find a good acupuncturist is to try them. If they know what they're doing, they will tend to treat areas other than the thyroid, because thyroid disease is autoimmune and thyroid symptoms affect the entire body.

The he other issue that affects weight is that when the thyroid levels get too low, the body starts shutting down other less important functions, starting with the hormone system. So even once you get the thyroid stuff managed, you have to take care of the adrenal exhaustion, the low progesterone and other issues that accompany thyroid disease and contribute to weight gain.

You're fortunate to live Ina warm climate, as this is much easier on your thyroid.

All the other stuff you talk about, I completely understand. Doc's can't tell I'm sick with a fever bc they don't consider the thyroid disease, etc. I get sepsis often because the low thyroid causes low immunit and wrong body temperature, resulting in bacterial growth. Then the docs can't tell bc my body temperature looks "normal".

Feel free to pm me. I can recommend a helpful boos that offers herbal treatment for getting the other hormones back on track. I can also tell you what sorts of dietary tricks have worked. There's a ton of info out there now on diet.

Hope that helps!

 

I don't know how to "pm", although I do understand what it means.  Maybe I should ask my 13 year old (ha ha).  Every part of Mexico is not warm.  We live in a very cold part as it is a mile and a half above sea level.  When it warms up in the early afternoon, we begin to thaw out (we have no heating system in the house).  

My friend here was a little overweight and started to take the Levo and the pounds just came off like I couldn't believe.  She hardly exercises, she hasn't changed her diet, etc.  I'm afraid, like when I took birth control pills at the beginning of my marriage, I'm afraid these "hormones" will have a dif. effect on me.  I never finished the first package of birth control pills because of the headaches and mood swings.  

There is acupuncture available here, I'm assuming when I go they will ask what is wrong.  Then, from that, they'll know.

That is exactly what happened to me!  I had a fever, the inside of my mouth was hot, my eyes burned, I felt terrible.  My husband took my temp twice! and it came out to 98.6.  He didn't believe I was sick and thought I was making it up.  Later my lips peeled from the fever and I figured out, I'm not in a "normal" range.  A nurse we know told me that 98.6 isn't everybody's temp., it is just the normal temp. between everybody.  But later, when I realized that my blood pressure is low, blood sugar is low, and now my body temp. is low, something was not right.  Of course, I've had blood tests that show everything is normal.  But I don't feel normal.

If you tell me how to pm you, I will.  

Pm, private message. Click on my screen name. It will take you to another page where you should see a menu and cans click " message". Thus will allow you to send me a private message.

The cold is really hard on people with hypothyroidism. Be sure to bundle in layers.

Another way to pm is to click on the envelope icon next to a person's name in a discussion. You do need to have your settings set to be able to send/receive PM's.

Thanks MtViewCatherine I didn't know how to do that method of PM'ing.

Thank you!

Hi, I'm interested in knowing what OTC Thyroid meds. and supplements that are worth trying. I'd be very appreciative if you could please let me know what they are.  I'm currently on Synthroid and have a hard time with it. Thank you for your help  

Hi Lashell. The best OTC for thyroxin replacement is ThyroGold. 

The best supplement is essential amino acids complex.

Both can be purchsed online.

You’ll also want to take good quality vitamin and mineral supplements. 

A gluten-free Paleo diet is recommended.