Unacceptable side effects of Levothyroxine

Yes, low thyroid can cause thyroid flashes. The neck heats up. This is a concern because it indicates your thyroid is not working properly, as the reason for the heat is large spurts of thyroxin being released sporatically, rather than a little at a time. Inflamation in the neck can also aggivate this cycle. I've found that if I ice the back of my neck, I can calm the thyroid down.

Because your having thyroid flashes, I would check your T3 and T4 levels because TSH isn't a good indicator for everyone. Also, if you have adrenal exaustion, this will overstrain your thyroid.

Since you're just starting out, I'd recommend:

1.  get a full thyroid panel so you know what really is going on.

2.  try some thyroid support hebs and supplements

3. look at adrenal symptoms to see if that may be part of the problem- if the adrenals may be an issue, you can try relora, it helps with weightloss and the adrenals, and is very gentle

4.  if your system continues to have difficulty recovering, see an acupuncturist- this is the quickest way to get your system back on track

5. if your bloodwork indicates that you really need thyroid meds, you might try an over the counter non-pharmaceutical glandular. Try searching for organic dessicated thyroid. That way you can try the natural and if you're aware of your body, you can regulate it yourself with minimal medical help.

Hope that's helpful.

Good luck!

Catherine

You could cut the pill in half and try 12.5 mcg if you have to take it again.

Thanks Catherine

I'm beginning to feel better since I left off the Levothyroxine and the hot flushes are less frequent, the itching is less too. The pharmacist thought the dose was too high, and concerned that I might be heading towards hyperthyroidism. To be honest I felt awful, worse than before I started taking it, I felt like I was being poisoned and I was slowly losing the will to live. I have enough medical problems without side effects like that, with cardiovascular disease (since 2003), asthma all my life and stable glaucoma for a few years, but my eye pressures have now gone up a little and I need more eye drops.

I'll wait for the results of my next blood test, which is a full thyroid function, and consult my doctor before I start taking anything else.

Joan

Catherine

can you tell me what relora is?

Christine

Hi Crhiristine- relora is an herbal combination of megnolia root and philiodendron root. It was originaly marketed for weightloss, but is extremely beneficial for kidneys and adrenals. I've used it with good success for balancing the body and it doesn't seem to have any side effects. You can order it onlione anywhere. Amazon carries a bunch of different brands.

Hi Catherine

Thank you for the info.

Kind regards

Christine

Hi Catherine, is organic dessicated thyroid available in health shops, or do you mean the armour from the pharmacist?

It costs a lot for the armour from my compounding chemist, but I have my life back after only 4 and a half days of taking armour. Am taking one day at a time, but the health changes already, feel like a miracle has happened. 18 years of taking T4 thyroxine and hell on earth. The next 6 years of taking T4 and T3 and still chronic ill health. Then two years aprox, of T3 only, and while a little better, was not improving my health or quality of life. I am walking around like a 30 year old since the first day of commencing armour. Still have very loud tinnitus and very cold feet, (basal body temp always really low.) Pulse more normal now in the mid 80's, and can't believe I wake up feeling so refreshed. Hashimoto's for me, has been a very nasty 26 year long state of trauma. If only armour was prescribed way back then in 1989. But to think that N.D.H. ( porcine) was all there was for 100 plus years.

 

I realy do not understand it when you say THANKFULLY SHE SAID I COULD COME OFF OF IT. i

If it is ruining your life then just come off of it, do not ask for permission. You are the one suffering not the doctor.

Cathy, I was so happy to read your post about the change in your life after getting on Armour. The same thing happened to me and I was beginning to think I sounded like an employee of Armour (which I am not). My "epiphany" happened within half an hour. I struggled to the bathroom about 7:00am like I always did. I could hardly get out of bed, had to hold on to the bed to steady myself accross the room because my knees and thigh muscles wouldn't work. In the bathroom I took my first Armour (nervously) and went back to bed for half an hour (my showering, cat feeding and chicken feeding uses up the other half an hour to make up the obligatory one hour before breakfast).

I lay there in bed watching the news and I felt a warmth filling my veins, I felt saliva in my mouth, the swishing sound in my head went away and when I wiggled my fingers there was no pain! At 7:30am I gingerly got out of bed, my legs worked! I could stand up straight away, I could walk accross the room! I am glad you used the word "miracle" because that is what it felt like.

I always felt like I was overplaying what happened to me but I am so glad to hear of someone else having the same experience. For me it was 2 1/2 years of Hell but now I am NEVER going back to that toxic Levo again and I will crusade for Armour as much as possicble.

Hi Carmel, I think the fear is, "What do I take instead?"

I had to do 6 months intensive research before I learned all about this stuff. I knew nothing about biology nor medicine. Suddenly I had no thyroid (I had thy. cancer) and someone prescribed a pill which kept me alive - but just. I knew if I stopped taking it I would die. 

Eventually I studied and understood many things and I can now stand up  to a doctor who is prescribing me the wrong stuff at the wrong dose. No more TSH T4 docs for me.

LAHs- Wow! And yes! So glad it worked so well for you!

The transition of f the levo and back onto the NDT was horrendous for me. I was in bed for 4 days straight.After that, much better back on the NDT. It took a good 6 months to feel like the levo was completely out of my system, and onther 6 months to feel like I was making progress in recovering from the damage caused by the levo.

After I went off the levo, I ran into a friend who also takes thyroid meds. I asked her if she'd ever used the levo or Synthroid and her response was simple, "Yes, that sh*t doesn't work!" She also found the NDT to be the only effective mediication out there.           

She went through what many of us deal with, that there was a "shortage" of Armour and other NDT meds out there for a while, so doctors are still hesitant ro prescibe them, because its so devistating for thryoid patients to not have meds.

Also, there are many NDT meds out there now. I prefer one with no additives or colors. Many have corn, dairy or dies in them that patients can react to.           

What is armour and ntd's? I looked up my labs they only have my tsh level listed at 35.11 with no t3 or t4's ran. So I don't know why they upped my levo? Shouldn't they look at all three ts?  

Wow, Peggy. MVC will give you a great answer but basically your body is screaming out  for T4 - and that is what Levo is, T4. After you have been on that for about a month, go get all of your T's measured and then you will have a better picture of what is going on. And post your results so that we can all give you an opinion!

Oh and Armour is  a Natural Dessicated Thyroid (let's say the "natural" form of Levo). You may not need it if you get on with Levo, post your numbers and let us know.

Hi Peggy- OMG! If you are not mistaken about your labs, you are in real trouble!, if your TSH is really at 35!!! I'm wondering how you're breathing. Could it be 3.5? Even that is very high. At this point, your TSH is so high, there is no question that you need meds. I forget now what your details are... but if you have other health  problems, you may not be converting T4 to T3.

Keep in mind that TSH  testing is really an outdated but still common way of diagnosing thyroid disease. It used to be the only test available, and it doesn't give an accurate picture of the problem. Also people can have thyroid disease and still have normal TSH.  So to really know what's going on, more tests are helpful.

To review, TSH is thyroid stimulating Hormone. TSH is produced by the pituitary and stimulated the thyroid to produce T4. The T4 then gos out from the thyroid to various parts of the body, and gets converted to T3 as needed. T3 is something like 100 times more active than T4, so the T3 is what really gives you energy, but it only lasts for about 4 hours. T4 lasts for about two weeks and is available for conversion as needed. T4 can get converted to either T3 or rT3 (reverse T3), or the T4 can be used by the body as T4. The rT3 basically prevents T3 from working properly. So often, rT3 is tested if your other numbers look ok and you are still tired. If the rT3 is high, you need higher T3. The NDT, natural dessicated thryoid medication, is particularly good if you have low T3 or high rT3. So you see how all these work together to create a regulated system. Its my understanding that since the T3 is at the end of the cycle, that this should be the trigger, or partial trigger for the pituitary. So if your T3 is very low, it could cause your pituitary to make a ton of TSH- the high TSH basically indicates that something in the feedback loop is out of wack.

The danger of having your TSH high is really that it is an indicator that something is really off in your thyroid loop- somewhere there isn't enough thyroxin. When the thyroxin is too low, the pituitary sends out TSH, then your thyroid starts working overtime because of the high TSH. When your thyroid starts working overtime, that's when it starts getting freaky, because the thyroid is this tiny little gland that has to regulate the whole body, and its getting stressed and keeps trying to work, but can't keep up.  So eventually the thyroid starts sruttering because it tries to keep working but its like an engine without gas... What eventually happens in autoimmune disease because, yes, the thyroid is located smack dab in the middle of the highest concentration of lymph nodes in the whole body. So the immune system freaks out on all of this, what appears to be unusual activity (but its really just the poor little thyroid trying to keep up). The immune system sees the thyroid producing more cells to meet the demand, and pumping out tons of T4, and the immune system thinks something's wrong, so it starts attacking the thryoid and sometimes even the thyroxin... you end up with Hashimotos's or Grave's disease. Now your immune system is attacking your poor little thyroid, making it even more difficult for the thyroid to function properly.

The whole autoimmune connection is the reason people with thyroid disease should go completely gluten-free. The gluten protein is very small and looks a lot like some of the surface proteins on some of the cells in our bodies and in particular, the thyroid cells. It is thought that gluten stimulates the autoimmune response that attacks the thyroid. Worse, the gluten protein is very small and can cross the blood-brain barrier, so can then cause a whole auto-immune response in your brain.

It unfortunate that edocrinologists don't have a good handle on the immune system aspect, since thyroid disease is really auto-immune disease.  So that's the long of why the TSH testing is uiseful and why it isn't.

It could very well be 3.5 as I'm assuming someone input it in I figure if it was a typo since it shouldn't be that high. I will pull it back up and see where that decimal point was. I'm going to be asking more questions in November. I just always assumed docs knew best. And I don't have a thyroid as I had cancer in it. So following all this is kind of confusing as most thyroid a are just doing to much or not enough so I don't know where it puts me in the scheme of things.

Hi Peggy, There's a way to dose the meds using your body wight. This method makes sense for people who've had their thyroid removed. Try doing a search for this, or someone else on this site may know where to go for this. 

I think you asked about NDT ealier, NDT is natural seisscared thyroid medication. Its made from ground up pig thyroid and can be purchased as a prescription medication under various names such as Armour, Naturethroid, NP, WP. I use WP because it doesn;t contain any allergenic additives. Most of the others do contain things such as corn, dairy and dies. The NDT is better because it contains both T4 and T3m and is basically the same molecular structure as our own human thyroxin, but differing natural ratios of T3 to T4. The levothyroxin is actually a synthetic form of T4. Everyone I've talked to can't tolerate the synthetic or find that it doesn't work properly, or both.

The whole levothyroxin thing is sort of crazy making because the doctors are all super convinced it works- thanks to those beautiful pharmaceutical reps with loads of lliterature... However, I know a lot of people on thyroid meds and I will tell you the only people I've met, all two of them, who the synthetic works for are both on a very low dose of 25mg, have no other health problems, no weight issues whatsoever, and are in amazing health, with the diagnosis solely based on a high TSH. These two people didn't have any noticable health problems. no low energy to begin with, and have no food or other sensitivities. Other than the change in their TSH results, there is no evidence that this drug does anything other than lower the TSH.

My personal experience was the higher the dose was, the worse I felt on the synthetic levothyroxin. I suspect this synthetic does little more than shift the blood results. Since there's no way to measure how much is actually getting into the cells, its important to also monitor how you feel on the meds.

Also FYI- the synthetics are also loaded with allergens, I used a compunded to be sure there weren't any additives. But as I said, even the compounded didn't work for me.

Catherine, I looked up the system by body weight it's 0.8 x 1 lb. so I'm on 137 according to that it should be 116mg so it's close.  And I really haven't had problems other than night sweats and hair falling out, and my skin is more itchy in spots than normal. I'm not sure if the hair is diabetes or meds or both. I stood a lot today and yesterday so my feet are swollen burn and hurt I have neuropathy from the diabetes.  So you see some symptoms mimic diabetes as well so I don't know if they are levo or diabetes. Can you get the natural thyroid meds OTC without a script or does a doctor need to write a script. I mean the levo at walmart is a 4.00 script.

Catherine I re looked up my tsh and it says 35.11 m... I can't remember the little dots. I go Thursday for a blood draw since they upped the levo. I plan on asking Phillip he's the lab guy. Cause the next line down it has 3.-4.5 as normal range why would the 35.11 not send up red flags. And I'm not sure if it isn't because I don't have a thyroid? And yes I have diabetes, ibs-d. I am going to be 60 and if I could get out of where I live I think I'd feel good. I hate where we are living I want to go back to ohio where my friends and family live but he don't want to.im doing some research on going without for my health and sanity lol. The ibs -d has been a problem for 29 years and I've dealt with it. I don't eat wheat, barley, grains, my ibs seems better if I eat sanwiches instead of meals, veggies, fruit very hard. You see these 3 issues don't play well together, if I eat for the diabetes I have ibs flare, if I eat for ibs my sugar goes a little twisty and now with this up of levo I'm trying to figure out if it's ibs, diabetes or levo.

Hmmm. Those numbers for weight seem a little low to me.  Also it takes a minimum of three weeks for the meds to "kick" in so the fact that you're having low thyroid symptoms may go away in time. If your TSH is still really high and you're still having symptoms a month after starting, you know the dose is too low.  The other thing you can do if you're feeling really sluggish is take a little bit extra once ina while. But that only really works well if your dose is only a tiny bit low. I would still strongly consider NDT. Better to switch early becauseit takes time to getthe dosing right.

You can get them otc or with a script, just different ones. If you do OTC, you most likely have to pay out of pocket, but it gives you more control over your meds, and saves you time with stupid doctors, but you MUST be able to be sensitive to your body enough to have a feeling what's going on. And you still need to get bloodwork regularly. The OTC brand, ThyroGold is organic, and you can get bovine or porcine. This is the on;ly brand I've found out there that seems like it would be sufficient for treating a real thyroid problem. Bovine is closer to human T4-T3 ratios. But if you're finding you're really sluggish, you may need more T3, in which case, the porcine one is better. Again, I like this OTC because its organic.The company seems to have improved with time. Another member of this group is using this and likes it.

The prescription NDTs are all porcine and you can do a search for all the different ones. I use WP because it doesn't have any allergens.

Hi- Sending you a private note...

Hi Peggy and MVC

For T4 only medication:

Weight in KG * 1.7 = Dose in mcg 

Weight in lbs * .6 * 1.7 = Dose in mcg 

Hi all, can anyone confirm whether the bovine 'WB Throid' (aka Westhroid-B) is still produced?

Also, my understanding is that ThyroGold is only available as bovine NDT (Natural Desiccated Thyroid).

MVC - your statement about 'the higher the T4 dose, the worse you felt on the synthetic levothyroxin' rang a bell with something i read recently about 'reverse T3', which it sounds like you have already read. Also, 'thyroid resistance syndrome'? Search on 'reverse T3'. I tried to put the name of the doctor, however it looks like it is a forbidden word.

Hi Barbara, Yes, I tested high for rT3. I did some research and suspect it has to do with the adrenal exhaustion... I recently had a rebound og the adrenal exhaustion. The adrenal exhaustion is caused by  the low thyroid... the whole thing is sort of circular. I found a book that gave some recommendations on treating the adrenal stuff, and other hormone irregularities that in my case, are the peripheral efffects of low thyroid.

I haven't checked the ThyroGold siite in a while, butthey used to offer both bovine and porcine OTC NDT.

Hi Barbara, yes you are right,  ThyroGold is only available as bovine NDT from New Zealand cattle, which have negligible rates of CJD (mad cow disease).