Unacceptable side effects of Levothyroxine

Hello Peggy, and welcome. Sorry for your difficulties. Unfortunately, your story is typical. You're probably overwhelmed and have typical brain fog that accompanies thyroid disease, so print this note out and read it as you can. I've included some great tips- sort of the "Full Monty" for managing thyroid disease. You don't have to do everything at once, but you can try them as you're ready.

I suspect the symptoms you're having are because the levo is not working and or you are on too low of a dose- possibly both. When your thyroid levels are way too low,  you get hot flash-like symptoms and eventually adrenal exhaustion. If you've had your thyroid removed, you should be on at least 150mcg per day, or more. There is actually a way to dose by weight, I've seen mentioned here in other posts- you can ask in a post or research it online. Following surgery, its unfortunate that the docs always like to wait a few months before they get you on the meds, which is horribly detrimental!

Thyroid and pancrease are both part of the endocrine system. When the thyroid is low, the other parts of the endocrine system try to make up for it, So your pancreas and adrenals become strained. For most people, adrenal exhaustion happens. Adrenal exhaustion also causes hotflah-like symptoms.  They say too high thyroid meds can cause increases in blood sugar levels, so my endo always watches those. I don't know any more than that though.

As for the family history, my family also has a history of thyroid disease, seems to be paired with heart problems. Just an FYI. Doctors are always really freaked about thyroid med levels because they believe that high doses cause heart disease. I suspect that is incorrect and more likely that low levels cause heart disease. The symptoms for high andlow thyroid are very similar and docs always will tell you its too high, even when its too low. There is a subtle difference, as if its too high, you'll have a lot of energy. My feeling is that I'm much more concerned that the meds are not too low, chosing to err on the side of a little too high rather than a little low. My levels are best when in the very high end of "normal". 

Thyroid disease is an auto immune disease, as is diabetes. Also, keep in mind, that although doctors don't consider this, the thyroid's location between a massive amount of lymphs and directly above the body's main lymph drainage point, pretty much defines the thyroid as an immune system regulator. So you'll have to treat yourself for auto-immune disease. Only alternative doctors will adress this for you. So unless you have loads of $$, you're on your own to figure it out. And like most of us, who've been so exhausted for so long that we are drained emotionally, financially and physically.

The doctors like to take their time getting the meds up to dose becasue changing the doses is horribly hard on the body for many people, as is changing the type of meds. However, its sort of a choice between suffering while the dose is too low, or suffering while you raise the dose too fast. Sucks either way. Me? I prefer to weather through the drastic increase in meds rather than waiting and suffering the constant degredation of the body while the meds are too low.

Its the degredation of the body that happens when the thyroid levels are too low, that can be extremely difficult to recover from. Low thyroid levels also can eventually result in the entire endocrine system going down, so, in addition to the adrenals and pancrease, your reproductive system goes down. Low progesterone levels, causing double or prolonged periods are very typical when thryoid levels are too low.  If levels stay too low, they will result in premature menopause becausethey body cannot make the hormones required to keep things running.

Keep in mind that the thyroid regulates metabolism. If y our metabolisom slows, your body is essentially acting at a much older age than it really is. So your body thinks its 90 years old and feels like it with all the accompanying disease.

Another note- if you feel like the levo smells chemically, it probably isn't a good match for you. Look for another choice for your meds.

Also, if you have stomach problems, you may not be converting T4 to T3, as much of this process happens in the liver and the GI tract. If this is the case, you'll need a T4/T3 combo. You can get this in both the synthetic and the natural, though I have only tried the natural.

There are a lot of things you can do.

1. Go gluten-free. The gluten protein in certain grains triggers an auto-immune response that attacks specifically the thyroid, but also other organs including the stomach lining, lungs and brain, to name a few.

2. Get a really great acupuncturist, who trained in the orient. The acupuncture wilol help  you weather the ups and downs of the thyroid meds and will decrease the effects on the body.

3. Heal your stomach. You'll have to do a special diet of meats, vegetables and fruits, no grains, starches, processed or fermented foods. There are many books on this. Sort of a modified Paleo.

4. Glutathione helps the stomache heal.

5. You have to be your on doctor and advocate. Don't expect a traditional western doctor to do anything more than offer tests, surgery or pills. There are so many other helpful healing options available to you! Do research on herbs and other natural remedies. I found boron to be amazing. It has been found to be helpful in diabetes prevention and for treating arthritis. Get some and take it. See if it helps.

6. For releif of stomach problems, take 1 Tblsp flaxseed oil with 2 Tbls Aloe Vera juice. Careful with the aloe vera, its also a mild laxitive.

7. Try iodine supplement using kelp capsules. Be careful though becasue it can cause an autoimmune reactionand inflammation for many thyroid patients. See the  problem? Try it a little at a time and let your body adjust. If  you take too much, it can make you jittery.

8. Talk to other people with thyroid disease. They are everywhere, as thyroid disease is an epidemic. You'll find that for the most part, the only people who do well on the synthetic levo are the ones on very low doses who never had any symptoms prior to treatment and have no other health problems.

9. If you don't get results with the levo once you're well above the 150 mcg dose, try switching to a natural dessicated thyroid. Many people do much better with this. You can get them over the counter via the internet, or prescription.

10 Listen to your body. It will tell you things. Most often, that your meds are too low.

11. The meds take 3 months to level out, if you test your blood before that, you're likely to get a false spike, so your levels look higher than they really are. This may not be as much of an issue with you, if you've had your entire thyroid removed.

12. You're dealing withthe endocrine system, so as much as it really sucks, you'll have to become an expert in hormones because they're all related.

13. Read up on thyroid disease and natural healing, as well as hormones. I'd stay away from any hormone suplementation and try herbs, yoga and exercise first. I know its a pain, but relaxation and exercise can make a huge difference in your hormones. If the yoga nad exercise don't help, try herbs. Herbs are amazing at balancing hormones and take three to six months. As a last resort, there's hormone therapy.

14. I've found liver/gallbladder flushes and cleanses to be incredibly helpful. Since many herbal blends contain milk thistle, which I am allergic to, I do a cleanse with olive oil and grapefruit juice following a short fast. With diabetes, this may be difficult, so you'll have to research it. Its really important to keep the liver healthy while the metabolism is low.

Good luck!

 

Really sorry to hear about your family's history of cancer, but glad they caught yours early. You may be on too high a dose. I suggest you have a look at the symptoms of hyperthyroidism and see if you think you have any of them and soeak to your Gp about reducing the dose if you do. Are you aware you can cut levothyroxine tablets in half without affecting how they work? On ocassions, I have changed my dose by a quarter of a tablet at a time.

With regard to the burping...Has your brand of levothyroxine tablet changed? Although all the levothyroxine tablets have the same active medication, they are not all the same as they contain different extra ingredients (known as fillers) that make the tablet bind together or be absorbed. People vary in their reactions to these fillers, some reacting to ones that others are fine with. One can also develop a reaction to them after taking them for many years - I did. If I were you I would ask the pharmacy which brand of levothyroxine you were on previously when you were ok with them. Then explain to your GP you seem to be having problems with the brand you have been prescribed this time and could you have another prescription so you can get a different brand (back to the one you were ok with).

Given your family history of thyroid disease and cancer, if you have any children it would be worth getting them regularly tested for thyroid disease and keep monitoring for thyroid cancer.

Yes my daughter has been tested I don't know if the boys need to be. Both my sisters have been tested. The big problem is my thyroid test always came back within acceptable levels. But instead of it growing outward as in goiter mine grew downward behind the breastbone, my mothers was the same way. One of the sign of an overgrown thyroid is you have trouble swallowing not just food but liquids as well. As for the new level of levo I've only been taking it for about 25 days and at 30 they want me to come in and have the levels checked. I go to walmart and always have for my meds. Yes I know you can cut them as my old script was for 175 and I had to cut it in half for 87.5 mg.  so I'm going next week for another blood draw to check my levels. All my kids are adults now and I've told them about it my daughter does have hers tested. But she has kids and wants to be around for them. She says the docs all say her levels are normal but she thinks something isn't right. But insurance being what it is they have to pay the first 4000. Between cars, mortgage, kids, living that is a lot to come up with. So she's just in a sit and follow pattern. I really will continue to follow I'll know next week if they're going to drop the levels. I got a feeling till they decide my level is correct my hair is going to continue to fall. I always had thick hair but it isn't anymore but that started a few years ago. Just not as much.  What other types of medicine are there for your thyroid are there?

Hi Peggy-

One of the major problems with regulating thyroid is that it takes a full three months for the meds to level out. If you test before that, you can get a false spike. This results in constant yoyoing with meds. because your docs think its higher than it is, tell you to lower it, but its really lower than they think... So you also have to consider how you feel.

So since you're testing early, your can expect yourlevels to show a little higher than they actually are.

As for "within normal ranges"... here in the US normal ranges are as high as 5 for TSH. This is just an example, but if  you have above 2 for TSH, your levels are too high, indicating strain on your thyroid. ALso, when on the meds, it is fairly normal for the TSH to go to nearly zero, but inexperienced doctors often freak on this. Its pretty normal.

You can look up healthy thyroid ranges online to get a good idea of where your levels should be. Eventually, you'll start to be able to know where your blood tests should be for you to feel well. For example, I generally feel best when my T3 and T4 are in the high end of normal or even slightly above.

Thank you Catherine, no one really explained anything to me. I was diagnosed with diabetes in early 2008 and had probably had it for a while because of the damage to the nerves in my feet. I have had ibs-d since 1996 I had dealt with the diarrhea since my son was born in 86. They removed part of my colon in 96 because of a pre cancerous polyp. I am not a good patient as I don't go to the doctor unless I'm sick. I go once a year but now because of obamacare I have to go every 3 month cause that is all they will write my scripts for.  I have no insurance they raised my rate 2 1/2 times more than I had been paying and on a fixed income I can't afford it. So I have to pay out of pocket for it all. But such is life. I use to walk I don't much now I do dance once a week. So much I never knew about, or asked questions about it confuses the heck out of me to me it sounds like they say this then change it to that. I always feel like  I'm a simpleton because I can't remember and keep it all straight. And it live in a rural eastern ky county. The closest big good hospital and doctors are 1 hour away and I can't afford them. So I'm just trying to make the best of a situation that my body put me through. 

Regarding your comment ..."simpleton because I can't remember and keep it all straight" are you aware that these are synptoms of hypothyroidism? Cognitive problems and memory problems! So don't beat

Hi peggy, I didn't press reply! I was trying to correct the mispelling of 'symptoms' four lines away when it decided I had done so!

Regarding your comment ..."simpleton because I can't remember and keep it all straight" - are you aware that these are synptoms of hypothyroidism? (Aka Cognitive problems and memory problems!) So don't beat yourself up about it. It's just that your thyroid levels aren't correct, so your body isn't metabolising your food to get the nutrients your brain needs to work properly!

Boys do get thyroid disease so it is relevant that they get tested.

Yes, the "brainfog" is very typical of thyroid disease.  I read a hormone book and in the chapter about thyroid she advises, that if you have low thyroid, get it fixed first because you won't be able to focus enough to comprehend any of the rest of the book. Yup!

Then I guess it's a double whammy as the diabetes does the same thing. I have noticed if my sugar gets to low for me that's below 100 I can't remember what I'm saying or trying to say and it's even worse than that if I'm overly tired. I can't bring forth words sometimes you know when your trying to think of something. I was talking to my husband the other day and I was trying to tell him about the crock pot but I couldn't remember the word and he finally said it and I said yes that word. But he thinks I'm just making it up  but really I have bad days where it happens a lot  then I may go weeks with out doing that. So do you think I should wait 60 days for another blood draw instead of 30 to see if the levels of levo are good.  I'm thinking it would make sense when they put me on metformin it took my body about 60 days for me to get use to it. And not to be nosey does thyroid meds and or your thyroid affect your sex drive? 

Yep, low libido is a symptom of underactive thyroid

Hi Peggy,

Non-existent sex drive! I'm exactly the same with 'losing' words.I know what I'm talking about,say, to my husband, but have to describe the word.It's like 'Give us a clue'. I've recently not been so bad, but now have it back again. The only change in that time was that I was on double steroids (I'm on replacement for hypopituitarism) to fight an infection. It was just as if the extra steroids were making my thyroid function improve. Now I'm back on my usual dose of steroids, and I can't get the simplest of answers in a crossword.It's really frustrating! Gill

Hello to Pauline who attempted to post but was sadly, booted out. The site has in their requirement that alternatives are not allowed. Well, lets see if this post gets deleted! Its unfortunate that this site discourages "alternative" recommendations, as with thyroid disease and the dilimna we're dealing with that the meds and care are inadequate, other options are extremely important. Pauline, please feel free to post proviately to me... Hope you're able to figure that out. I'll try to post to you  privately, if I can figure it out.

Catherine

Yup, low thyroid messes up all your  hormines...  Once you get the thyroid right, its pretty much a constant battle to then rebalance all the other stuff.  Without herbs and other treatments, it will take years for the hormines /endocrine system to rebalance.

Hi MVC and Barbara,

I have been reading about hypothyroidism and the brain recently and thought I would pass it along because it is fascinating.

Some say that T3 does not pass through the Blood Brain Barrier (BBB), but T4 does and it is the brain (as a periferal organ) which converts the T4 it gets, to the T3 which it needs. More recent research has measured that some T3 does pass through the BBB, but not much.

If you do not have enough T4, (i.e. reduced dose due to Low TSH) then your brain will suffer just as our bodies suffer other hypo symptoms. The fact that some T3 gets through on it's own is born out by the fact that for many years psychiatric disorders have been helped by dosing with T3 alone.

It is absolutely essential that the effeciency of T4 to T3 conversion be established in the medication of hypothyroidism if you are going to medicate with L-T4. This Myopoc reliance on TSH alone borders on malpractice.

 

What was the problem with Pauline? Can you explain in "politically correct"   language (so that it is acceptable to the moderaator) what the problem was? I didn't understand "alternative" recommendations.

Maybe the site should use the computer memory space to include a spell checker instead of a censorship algorithm.

And on the subject of spell checker, that should have been "myopic" not ...what I put.

Yes, if you click on the "why" by here comment that got deleted, it shows "alternative" and "weblinks"  are highlighted. So I can only assume that was the problem.  Interestingly, many comments that are edited out initially, become mainstream and are excepted in later comments. Pretty lame since all this does is make it hard for people to share. I get that you don't want a bunch of vendor spam, but its pretty easy to tell the difference between spam and people having discussions. Duh.

 

Hello MVC LAHs & Pauline, what was interedting about Pauline's moderated post is that gmail gave me the first few lines of it in the email notification. What Pauline was trying to say was that she was in the middle of reading this really good booked called 'stop the...' (you know the one).

Pauline, did you know there's a website of the same name? It's really good.

Also it's equivalent in UK is tpauk (google this). If you register you will get acces to treasure trove' which is enlightening.

Ah, Yes, we all know the book. Is it any good?

I have no hormones I was finished with all of that 19 years ago that's when it started. But I was working had 2 kids under 10 and moved 2 times. I know diabetes also causes issues but to me it is like working to even get interested in it.  I was just wondering because it is worse now than 8-9 years ago. 

Hi Peggy, Yes, you still have hormones. Hormones include testosterone and adrenaline, as well as all the female stuff. you still need all this stuff to be balanced and functioning even if you're "past all that stuff". You just don't have the monthly indicator to give you hints about what's going on. Because the thyroid and adrenals affect all the hormone levels. You need them to be healthy. I'm not in any way advocating HRT. I'm saying, its something to look at with the hypothyroidism because the rest of the endocrine system winds up as a casualty to the hypothyroidism.

They have done a hormone check in 2007 because the gyn  didn't believe I had gone through menopause  by 40 he said my levels couldn't be read. I was on hormone replacement for 6 years I had a doctor that insisted I have another mammogram and I refused as they bruised me the year before she refused to be my doc so I quit taking the hormones. He said they didn't want to put me back on anything since I was over 50. So I keep going around in circles lol.  I will find that book and read it and see what it can tell me. 

Hi Barbara,

I couldn't agree more, it is a fantastic book. I have just finished it and I am about to read it again, it is amazing. I have also been on the tpauk site and agree, it is great.

MVC, "is it any good?" Yes, Yes, Yes. You HAVE to get it. It is a collection of chapters written by experts colated by Mary Shomon. Chapter 7 was a bit hard to read the first time but everything else is great. 

Oh great! Glad to hear its helpful. I've read many books, But good to know people have found good information.

Hi Barbara 

Thank you for the info, I will go to this website now, thanks once again!

Sorry Peggy, i misread your post, it sounds like you are hypothyroid not hyperthyroid. Do get your iron and Ferritin checked to see that you're not anaemic.

I've just been to see an endocrinologist who said T3 gets through the blood brain barrier better than T4??? It was rumoured that he would be able to prescribe NDT, hoever that dors not seem to be the case

Nope, it's the other way round - at least the papers I have read, sorry I can't give you the links. In fact one or two luminaries say T3 doesn't cross the BBB - however, psychiatrists(sp) have been treating psychiatric disorders (successfully) for decades with T3 - so it must get through a little bit. It is said that T3 gets through via the "gaps between the astrocyte's feet"! You'll have to read the papers, it's hard to summarise.

If the doc does not believe in NDT yet believes that T3 crosses the BBB, how does he imagine your brain is going to get any. I think he was just a bit mixerd up and thought that you wouldn't understand - little does he know!