Unacceptable side effects of Levothyroxine

 was on 200mcg thyroxine (in winter, 175mcg in summer) but have been able to reduce it by 25mcg since I started taking it on an empty stomach at least 30 minutes before breakfast. Advice now is to leave at least 2 hours (some say 4 hours) before iron or calcium medication as these affect the absorbtion of thyroxine. I'm not medically qualified but I interpreted this as being 'it doesn't get used by your body so it stays in your bloodstream' - net result is underactive symptoms but blood results that suggest you are overactive.

Hi Barbara, Yes, get boodwork done, but in addition to the TSH, you need the T3,T4 frees and the T3 total.  For some people the bloodwork doesn't accurately reflect the symptoms because they aren't converting the T4 to T3.. Keep all your ranges at the very top, or slightly above if that's where you feel OK. My TSH was never super high even though I felt like I had total thyroid failure. And after medication,  my TSH pretty much zeros out, which freaks out the doctors who don't know what they're doing. But even when the TSH is zeroed out, the T\3 or T4 can still be low. SO  you ohave to check those every time, if y ou fall into the category of people  with whose TSH does not reflect their symptoms.

The conversion of T4 to T3 happens in the liver and GI Tract, so keep your intestines and stomach healthy, no gluten (wheat, rye, or barly) of any sort whatsoevever!!!!! That's super inmportant!

ALso, if you have stomach and digestive problems, you may not be getting proper nutrients, so make sure you're taking a good multi-viamin and multi-mineral. Mine was so bad, I found the prenatal vitamins to be great.

For me, if my liver and GI tract are healthy, the meds work better and the test results better reflect my symptoms.

Hope that helps!

Catherine

Thank you for replying Catherine, it's nice to know I'm not the only one who operates on an immeasurable TSH. I'm lucky to have a very supportive GP who treats me based on symptoms. I found what you said about knees and oestrogen really interesting. I have problems with my knees. I'll research it and discuss it with my GP. Also the dietary problems. I've recently developed histamine & milk intolerances. It sounds like it's all related to thyroid.

Hi Barbara, On my latest drop, it was very obvious that the low thyroid results in digestive problems. In other words, thyroxin is required for proper digestion. When my levels bottomed out this time, I had horrrible stomache aches, which were relieved when I took a litle extra medication. This made it really obvious that the digestive problems and resulting food sensitivities are caused by the low thyroid.  Hope that's helpful.

Hi Catherine, you're right having hypothyroid is definitely a factor. I'd like to add a bit more information to the debate...which makes me think there is something else going on as well. I have been treated with levothyroxine so I that I am at the high end of T4 range with unmeasurable TSH for years. Question is, is it levothyroxine to blame or something else?

Hi Barbara, Your point is a good one. When the thyroid goes down. it pretty much takes everything else down with it. So unless the docs catch it early, which they don't because they don't test for it, its difficult to know what's causing what. I'm fortunate, that I have a giant red arrow pointing to the problem, in the form of a huge cyst on my thyroid. The other stuff is periferal, so I've treated the various symptoms as needed to keep the body from going down. I'm gluten-free, I go to acumpuncture frequently, cleanse, etc. But because of the giant cyst, I keep going back to that. I know my thyroid has always been low, as I was an athlete as a youngster and still had to really always watch my diet to keep the weight off.

The other thing that keeps pointing is that I have thyropid disease on both sides of my family, which I discovered recently. So, yes, I'm treating everything else, keeping the liver and stomach healthy, etc. But the thyroid disease is a biggie. My doctor has offered to remove it, but from everything I've read, that doesn't help and isn't the answer. I have had some luck with reducing the size of the cyst by taking boron supplements combined with acupuncture. The boron gets rid of hards cysts. The acupuncture helps the body get rid of it, and keeps the inflamation down.

After visiting my endo two days ago and trying both increasing and splitting the dose, I immediatly feel better, though that could be relief and the increased dosage. I'm wondering if the high dose all at once was causing me to swing between hyper and hypo all in one day. I had a lt of water retention, which seems to be going down now with the increased dose and the split.

Has anyone had any luck splitting the dose? I'd love to hear if anyone's found this helpful.  I'm on 180/day.

Hi Catherine, thank you for your very interesting and comprehensive reply.

I'm going to try splitting the dose. First though I'm going to try taking thyroxine at night (basically because i forgot to take it this morning!)

I like taking it at night. It seems to help me sleep and I get to sleep through all the jitters it can cause.

Let me know how it goes for  you!

I was on levothyroxine and felt terrible. I did a couple of things and feel much better. The timing of how you take other supplements can make a world of a difference. I take it in the morning with water, wait an hour before I take my cranberry capsules and vitamin D. These are non-sulphuric. I take fenugreek, cinnamon, selenium, hyarulonic acid, ALA, MSM (for knee issues), and DIM (to help with menopausal symptoms) at least 4 hours later. I take melatonin before I got to bed. The issue is that most joint supplements are sulphur or calcium based and they react with the levo. unless taken with a large interval between taking the levo and the supplements.

It totally changed the way I was reacting to the Levo. Another thing I did, is I studied my body, because I would border on hypo and hyper depending on my levo dosage. My GP, who as most GPs starts me off on a lower dosage and tells me to suffer through it, until I hit the right dosage. I increas it a (like she told me take 100 mcg, I started with 125 and felt great) and go on with it for about a week. Then I see results. I realize that when I am on the verge of being hyper I get night sweats and heart palpitations. As soon as I see this I bring down my dosage (112 one day and 100 the next day and repeat) and go on it for a week or so. When I am hypo, I get trembling in my hands and body pain. Then I increase my dosage 112 each day.

Many people may say the night sweats and heart palps are the result of menopause. In my case I know it is the thryroid, because as soon as I lower my dosage of levo, the very next day I see a decrease in the sweats and after about a day, don't have them at all.

I also want to add that you should not have anything except water after you take levo, for about an hour.

Hi, I am writing on behalf of my sister who in her teens was diagnosed with Graves Disease.  She went from hyperthyroidism to hypothyroidism (so cobwebs925 it does happen)...currently my sister is in a terrible state, she stopped taking her levothyroxine for nearly 5 years and as a result she has lost her power of speech (she stutters and stammers) she cannot find the correct words, her memory is almost non-existant, her hair is completely white, her eyesight is going and because her husband had no clue what was wrong with her she was diagnosed with alzheimers.  So please take your medication no matter what....

That is so sad.Yes,I'd second that about taking the medications.I find levothyroxine difficult to take because I feel it has unpleasant side effects,but although initially you may feel better coming off them,just because of having relief from the side effects,the body needs something.I'm hoping that my something will be a change in medication.Thankyou for sharing your sister's story with the rest of us.Gill

Omg, thank you for all of ur explaining. . I lost my thyroid 2 yrs ago due to cancer had a double let round of ria pill. Now just lost my thymus due to surgery.

Anyhow, they had me on 300 mg of synthroid brand. My dr , after 1.5 yrs cut me back to 150 synthroid for 3 weeks to give me a period. . After that she put me back up to 300 synthroid.... 2 weeks later I started with worst palpatations, amxiety, crying etc etc about 2 hrs after my dose in the am I saw my general dr pcp, she said stop synthroid all together for 4 weeks to start feeling better (and the palpatations, anxiety shortness of breath etc all got much better) then started me on 25 synthroid every other day for 1 week then 25 daily for two weeks then 50 every day 2 weeks and see how labs r a d how feeling. She's good with treating on my symptoms thankfully.

I'm just starting the 25 every other day and got a head ache and feel nausea feeling and some palpatations are back again, but still doing what she said.... I asked for armour and she said no .. owell.

On a side note,

I am also dealing with cdiff outta the blue.. started cdiff treatment after she cut my synthroid back..

Will I ever feel okay again? Is there anything that causes no palpatations etc... I made a dr appt for a specialist locally, endocrinologist. .. but can't get in for 3.5 months from now and I'm scared I will feel this way forever, I want to enjoy life but who knew getting the cancer cut out wld cause such issues with synthroid treatment? ??!!!

U know so much, bless you !!!!!

Ps.

They literal have big issues getting blood from me, I'm a bad poke I'm told alllll the time... so, they cldnt get my labs before she stopped my synthroid. . But I hope they get labs drawn fine this fri (in a week) and she will hv answers for what my numbers r saying with me on rhe new 25 synthroid dose

How will my dr know if I need t3 help too? Do labs show that? It seems like she's good about listening to my symptoms but isn't saying much about the t3 nor wjy n I shldnt try armour, she just says no when I ask for armour

I hv felt the best , during the last 4 weeks that is.... bc have had zero synthroid taken daily.... but I'm not dumb n know I canT like without synthroid rx, but wish I Cld feel how good i hv felt the last 4 weeks without taking any synthroid

Hello Catherine,

You seem incredibly knowledgeable about this thyroid stuff. I've been feeling rotten for years now. After my mother passed away, I and my doctors assumed I was just depressed. I had/have zero energy, sleep way too much, (I honestly feel like I could sleep for a week) and have to force myself to do the daily life things. I also have been recently been swelling badly in my legs and ankles. So I finally got some insurance this year, and decided to go check it out. I told the new to me doctor(family doctor) that after all MY research, hypothyroidism was the most logical answer. So he ordered up a huge array of blood tests. Amazingly, he called me the same night and stated that my thyroid levels were abnormal, and that he was going to start me on a low level of Levothyroxine. (50mcg) once a day in morning an hour before food and other medication. Well, since starting it, the only difference i feel is horrible stomach pain. Upper stabbing, like sandpaper rubbing against my insides. Now, ive had ulcers on and off in my lifetime. Ive been taking Levo for 5 days now. The pain started 4 days ago. Is this from the levo and common place? Or is my ulcer just coincidentally happening at the same time? Any and all experienced answers welcome. Thank you in advance

Hi Erin, yes, what you're experiencing is "normal". I tried for several years to work with the levo, it didn't work at any dose. It shows in the blood, but is biologically inactive, except to accelerate thyroid and other autoimmune disease. 

Pm me and I can give you a giant list of helpful hints and dietary guidelines for thyroid health. I've tried everything I can. Some things have worked, some haven't. My conclusion is the meds don't treat the problem.

For you, stress is a huge factor, so you have to start there. The massive bloating indicates adrenal exhaustion and weak kidneys. You'll need to also address these. The faster you get yourself back on track, the better your chance of recovery.

Hi Erilynn, my thoughts on this are:

I suggest you make an appointment with your doctor to get the stomach pains checked out. A high percentage of ulcers are caused by a bacteria Helicobacter pylori which can be cured by treating with certain antibiotics. If it turns out to be an ulcer caused by other means, ask what you can do to help. As Catherine says, stress is not good for ulcers (or thyroid's, or any of part of the body).

Also, ask your doctor/pharmacist if you can switch to another brand of thyroxine as they differ in the fillers that are in them (the extra ingredients they add to the tablets to make them bind together and be more easily absorbed). Try to get one without acacia powder and as few fillers as possible. I didn't have any of these symptoms when starting thyrozine, so it isn't 'normal' from my viewpoint. You could try reducing your dose to 25mcg for a few days and see if the symptoms improve, then increase the side after 1-2 weeks, increasing by an eighth of a 50mcg tablet every 2-3 days (i.e. by 6.25mcg). This will give your body chance to adjust to receiving the medication. It's difficult to be exact when cutting the tablets up, so if you take a bit bit one day, take a small bit the next. Your doctors advice to take in the norning, an hour before food, is a good one. Also take 4 hours away from medication containing iron or calcium. Having you had your Ferritin level checked? It needs to be 70+ to be able to absorb thyroxine. The bottom limit of the range for Ferritin depends on the lab that did the test, but is usually about 15, so you can see it's no good being told your Ferritin test result is 'normal' you need to know the exact figure. ALWAYS ask for a printout if your blood test results and write in them what medication you were taking when the test was taken. By the way, on your next thyroid blood test it is important that you don't take your thyroxine on the morning of the test else it will give artificially high results. Its also worth getting other vitamins and minerals checked (by a blood test). The common ones people are deficient in are vitamin D and vitamin B12, folate, iron, ferritin. If you can, get magnesium, selenium, sodium, and potassium checked too that would be good but its not usually done. As you can see there's lots to learn, monitor and manage if you are to feel well again.

The mechanism by which thyroxine works, is that your body conversion thyroxine (known as T4) into liothyronine (known as T3). It is the T3 your body needs to be able to function. This works OK in 85% of people, however some people's body's have difficulty doing this conversion - I am one of them. You won't find out whether you are one of these people until you've been on thyroxine for a while (a year?) and have been on a stable dose of thyroxine for several months, with blood test results in range, but still feel hypothyroidic. Do go back to your doctor and tell him everything you've told us.

Sorry, for 'conversion' read 'converts'

Hi, I'm not feeling much better after some time on Levothyroxine 100mcg, I've had a private blood test which clearly shows I'm not converting T4 to T3! So the NHS blood tests look fine but looking a bit deeper they are not fine. Unfortunately I am unlikely to get any different tests or treatment on the NHS, I think they like to keep us ill for some reason.

If you can see the test result I have uploaded it may help you to understand. I have now added some T3 increasing slowly, fingers crossed. Not sure if I will stop the T4/Levo altogether.

Levo is a synthetic T4 only. When I was on it at best, my T4 was at the top of normal range and T3 at the low end of normal. 

Levo go is synthetic. You can't expect yourbody to use it. 

Converison happens predominantly in the gut and liver, so those need to be healthy.

if you have heavy metal toxicity, you could have high eT3, stimulated by heavy metals. rT3 binds up T3.

i can send you a PM with an intereting summary article I recently found if you like.

It took some effort, but the NHS now do T4 & T3 blood tests for me as well as the TSH. My GP puts the code on 'ETHY T3 + T4' on the form (which I think means something like extended thyroid tests). At one point my GP rang the lab whilst I was in my appointment with him and demanded that the lab did the tests he had requested!

Thx Catherine, PM me anything you think might help. 

I'm going to take my blood results and discuss them with my GP, we will see where that leads me. My first challenge will be to get an appointments!

Thx for the advice re blood test form.

Hi tcky, just saw your posts from a while back. Hope you're doing better now.

It's laughable, but wasn't at the time. Went to GP appointment with no success. The new/young GP was pleasant enough, but I don't think he even knew that T4 has to be converted to T3 for the body to be able to use it! He had to go consult with another GP then came back to say a GP cannot prescribe T3 and anyway it would send me hyper. Oh well, I'm on my own! 

I've just pm'd you with info I found useful.

It covers how to get ThyroGold and links to info on self dosing. Google stop thyroid and madness and you'll get an informative site.

Hello Catherine, my name is Zahra. I'm terrified. I'm suppose to have my thyroid removed in a couple of weeks and I haven't read not one positive thing. But all the doctor keeps telling me is not to worry. Can you help me and give me the list also. I appreciate it. I'm only 41 and have always been healthy. And know idk what's gonna happen to me. What should I do? They said I have a nodule that's cancerous in my left lobe. Less then 2cm. I've been debating weather or not to remove my whole thyroid. That's what they want to do.

Hi zahra, it's really good news that your cancer has been picked up early.

I can understand your concern. To help put things into perspective I offer the following information. 85%of people who get prescribed thyroxine do fine on it. These people are off living their lives - they are not posting on this forum! It is the other 15% who aren't doing so well who are on this forum looking for ideas of what they can do to feel better.

Thyroid cancer needs addressing in a manner that means there is no risk remaing. My friend is currently dying of thyroid cancer because his surgeon only removed the nodules, not his thyroid - the cancer came back. This is why your surgeon wants to remove your thyroid. The conditions in your body that led to the cancer in your body in the first place are still present, so it is best to remove the possibility of it happening again.

Thank you so much Barbara, I appreciate it. I'm just going to have to hope and pray that I adjust to the medicine and my new lifestyle with ease. And I wish everyone else good luck as well

Hi there. Just read your reply there. How did you get cdiff out of the blue? I ask because I had taken clindamyacin a coupe months ago and haven't felt right since.

MtViewCatherine I'm reading your tread but not sure how to pm you - having trouble with synthroid, feeling absolutely desperate and crazy at the moment. Any advice would be beyond helpful. Thanks, Jennifer

Hi Jennifer, have you tried ThyroGold? I never felt well on thyroxone, I switched in June 2014 and now feel great. You buy it online from US and don't need a prescription.

Agree with all you have said, but would like to add that doctors need to and nutritional profile like Intergrated Practitioners do, so they don't treat SE

Thanks Cathy, I completely agree. But that,won't happen. No money in nutrition.

Hi. You said 'I tried for several years to work with the levo, it didn't work at any dose. It shows in the blood, but is biologically inactive, except to accelerate thyroid and other autoimmune disease.'. I heard that once on levothyroxine your thyroid packs in and becomes dependent on it. I asked my medical herbalist but she said she didn't think that was the case. I'd be interested to know what you have heard about this as this is the reason I tried to avoid taking it for years but eventually had to succumb. What you said is worrying.

Hi Jackie, an endocrinologist told me that about 15% of people don't do well on thyroxine (which of course means 85% do!)

From my research, I deduce that these people are the ones who don't convert T4 to T3 very well. It is T3 which is the active hormone our bodies can use. For these people, this means the T4 stays in their bloodstream and gives erroneous TSH readings (because the pituitary gland thinks there is enough T4 available - because there is!), yet they still get hypothyroid (i.e. under-medicated) symptoms because the T4 isn't being converted to the T3 their body can use.

I personally don't think the thyroid is damaged by being treated with thyroxine. The reason the thyroxine was prescribed in the first place is because the thyroid was damaged/being damaged and wasn't producing enough thyroid hormones. This damage to the thyroid continues after treatment with thyroxine, not because of it. The damage continues and more thyroxine is needed.The thyroxine treatment merely mitigates the effects of this damage i.e. gives one of the hormones that the original, undamaged, thyroid used to produce.

I deduce that the 15% of people for whom thyroxine doesn't work well are those who do best on NDT (natural desiccated thyroid) because it has in it all the hormones that a healthy thyroid would produce i.e. T1, T2, T3, T4 and Calcitonin.

I hope this clears up some of the confusion and puts your mind at rest.

There is some evidence that having a gluten free and soya free diet can help if one's thyroid is under attack from one's immune system.

As Catherine experiences the problems described in my above post (Thyroxine (i.e. T4) not working and giving erroneous TSH an T4 results) I would say that she, like me, is one of the 15% who don't convert T4 to T3 very well. Would you agree Catherine?

Jackie, do know that food affects the absorption of thyroid hormones? Take your thyroxine on an empty stomach, at least 4 hours after eating, and leave at least 30 minutes before having anything to eat. Also, do not take nedications containing iron or calcium within 2 hours either side of taking your thyroid hormone, in your case thyroxine.

The other group of people for whom thyroid treatment doesn't work very well is those who have adrenal problems (addisons or cushings disease). All this information is in the Patient Information Leaflet that accompanies the thyroxine medication. Although the way it is worded doesn't highlight its importance.

Hi Jackie, you are correct, all hormone therapy has a suppressive effect on your body’s natural hormone production. So your body becomes dependent.  Even when you no longer gave a gland, orher cells in the bidy retain the caiacity to oroduce small amounts of hormone. For exampke, fat cells are known to produce estrogen, muscle cells increase testosterone.

Hormone therapy of any kind generally triggers the pituitary to lower its productions signals to the rest of the body. These feedback loops can get really messed up, as while we think of each hormone as acting independently, they really all work together in a fine balance with the pituitary as the main control through feedback loops. When one hormone in the endocrine system is off, the rest of the endocrine system tries to compensate. This is (part of) why hypothyroid patients have so many health problems.

A major conclusion after years of thyroid medication is that I’m better off working with my body, nutrition, and other alternatives than taking the thyroid medication. The suppressive effects make it ineffective, harmful and physically addictive.

Sadly, my mother struggled with this dilemma  her entire life, as there was little help available 50 years ago. She was judged for not taking neds that she knew were harmful. There is such a perception that medications work. It can result in a stigma for the folks who can’t tolerate them. 

I know the research Barbara mentions says 15% of people can’t take the meds. But, really I can’t believe this to be acurate since I know so many people personally that find the thyroid medications ineffective. 

From a purely biological perspective the synthetic meds cannot possibly work and are a textbook recipe for cancer.

There was a huge longterm study published recently showing that synthetic thyroid medications are useless for symptom relief. It was extremely well controlled with many subjects over 5 years. 

Hi Catherine. Thank you very much for the information and the detal. I am definitely going to do more research and get clued up on it all. There's a lot to consider. I do have more energy and am not lethargic like I used to be but I am sleeping a huge amount and in a deep sleep, like I never have before. That bit I like. But I now have a constantly bloated and uncomfortable stomach. Lots to think about, explore and consider. It seems a bit of a minefield and could be a bit overwhelming. Thank you again.

Hi Barbara. Thank you very much for your response. It all seems like a minefield and I'll need to build up my knowledge and understanding. I have do many food sensitivities and I have been trying a diet that is very restrictive. Difficult to do it 100% I'm on medical herbs for immune system issues and am wheat free, gluten free, sugar free, yeast free soya free, dairy free etc etc. It's a minefield but I'll keep trying as I don't want to be on medications especially if they are not resolving the issue, not treating the symptoms nor and are actually damaging my thyroid. Thanks for your help and I'll keep you posted. Jackie

Hi Jackie, if you do not have a functioning thyroid or your body is not producing enough thyroid hormone, you need thyroid hormone replacement therapy - same as diabetics need insulin. I agree with Catherine that in the early stages one may be able to address with other measures. However, Catherine and I agree to disagree about thyroid hormone replacement after these early stages. We do agree about how useless synthetic thyroxine is. One's thyroid produces 5 hormones: T1, T2, T3, T4 and Calcitonin, so it just doesn't make sense to only replace with T4.

Thank you Barbara. I am taking levothyroxine but my medical herbalist is working on the premise that getting the I. Immune system working may help the thyroid produce properly or at least better than it is now. What you are saying suggests this only works for a little while. I need to get my head around what you and Catherine are saying. I'm fairly new to this so am still finding my way around it. Thank you for your help. Jackie

How are your adrenal glands? If these are struggling then you will have impaired conversion of T4 to T3. Even the levothyrixine Patient Information leaflet mentions this (under the section 'do not take if'! So your nutritionalist will need to address this first.