Anyone having side effects to levothyroxine. Please tell me your experience maybe mine are not so bad like I think. Taking 150 mcg and migraines every day on my right side, muscle ache and kind of numbness
Levothyroxine : Anyone having side effects to... - Thyroid UK
Levothyroxine
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nancypapa
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SlowDragonAdministrator
As per previous post
healthunlocked.com/thyroidu...
No such thing as “normal “ results
Please add actual results and ranges
What vitamin supplements are you currently taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
Low vitamin levels common as we get older too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
As you have Hashimoto’s are you already on strictly gluten free diet
If not, get coeliac blood test done BEFORE considering trial on absolutely strictly gluten free diet
Sorry I haven’t have time to put my results but they are normal range after they put me on higher dose 150mcg. My endocrinologist tested for t3 t4 tsh all those normal range but also for thyroid antibodies and all results very high.
I’m having lots of bad symptoms and don’t know if is Levo or high antibodies
Ft4 and Ft3 in “normal range” …..means very little
Ft4 13 (12-22)
Ft3 3.4 (3.1 - 6.8)
These results are “normal” ……but obviously far to low
Ft4 18 (12-22)
Ft3 4.5 (3.1 -6.8)
Unlikely high enough or poor conversion of Ft4 to Ft3
Most people when adequately treated will have Ft4 at least 60% through range and Ft3 at least 60% through range ……on these ranges that would be Ft3 at least over 5-5.5
Plus extremely important all four vitamins retested optimal
High thyroid antibodies confirms autoimmune thyroid disease
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you currently taking
shawsAdministrator
Levo gave me immense palpitations. Eventually after lots of overnight tests the Cardiologist was puzzed and was considering putting an 'implant in my heart' to 'see' what was going on.
Just then, T3 was added to T4 - palpitations eased and I no longer took T4 and took T3 alone.
I had also tried NDTs (natural dessicated thyroid hormones ) - the very original replacements from 1892 onwards but it didn't help me = considering it was very first successful replacement for hypo patients worldwide.
If you take levo a.m. try taking it at bedtime to see if you have any improvement.
Oh Geez Shaws, an implant in the heart! Thank goodness you had enough knowledge and courage to realize you had an idiot for a doctor. It makes me so scared for the people who just follow doctor's orders - and from my experience there are a lot of them out there. I said, "No!" once to a thallium tracer but had an advantage of double checking my decision with a lot of knowledgable colleagues in the materials science field who agreed with me. I will never forget the words of one scientist, he said, "Thallium is one of the deadliest toxins known to man, stay right away from it!".
That's interesting. My body completely changed and I have a high resting heart rate, palpitations, and anxiety which I think is because of the fast rate of my system. I don't dare bring it up to doctors because they immediately want to take away my t3. NO!!! Could it be the levo? I now wonder after seeing your answer here. I will try taking it at night though. Could it all be related to Levo??
yes!!!
Be careful with T3 treatment. Long term effects are not well known and, as T3 varies a LOT intra day, it is much harder to assure you are not overmedicated. Think of t4 and t3 as the firewood and the fire itself. The body, through its wisdom, has to convert firewood in fire whenever it's needed. Requirements vary and depend on a lot of factors. If You are adding "fire" to the body when it is not needed, it could be WORSE long term.
I currently take 100mcg of levo and 20mcg of t3 meds. I'm now concerned about t4 meds and you're saying to also be careful of my t3 meds? What's a woman to do????
Our thyroid problems are a tricky thing...i started mine 4 years ago after De Quervain Thyroiditis. No antibodies, just long term effects of the virus I caught. I started a year ago with T4, and haven't resolved my problems yet. I still feel numbness and tingling in arms and legs, especially at night. I'm trying to raise my ferritin levels, now. Many times, we think Thyroid is to blame but it is in fact a nutricional issue (caused by hypothyroidism). It can also be a conversion problem (firewood to fire, t4 to t3). In that case, I would try to improve body conversion by supplementing with SELENIUM, instead of adding direct FIRE to the body, not knowing if your body needs it or not. Again, t3 requirements vary A LOT intra-day. T4 is more stable, its midlife is 7 days (t3 midlife is just hours).
I don't convert well AND I am end stage Hashimoto's as my thyroid has atrophied, i.e. it's pretty useless so I'm completely dependent on medication.
T4 converts to T3 OUTSIDE the Thyroid. Thyroid has nothing to do with convertion. That's why I was telling you to give it a try and include SELENIUM in your diet. So that deodynase can do its job more efficiently and more t4 is converted to t3, without having to supply t3 in pills. Long terms effects of the combination treatment are not well known.
"T4 converts to T3 OUTSIDE the Thyroid. Thyroid has nothing to do with convertion"
T4 to T3 conversion is done by deiodinase' yes , but ... unless i've misunderstood the content , these articles and the referenced studies (detailing which tissues in the body contain which deiodinase in greater proportion).... surely show that the thyroid tissue actually has a lot to do with conversion of T4 to T3 ?
thyroidpatients.ca/2021/01/... Thyroid hormone journey: Metabolism
thyroidpatients.ca/2020/06/... tissue-rna-expression-dio1-dio2-dio3/
If that were completely true, then practically ALL Thyroid patients would not get well just on Levo. Not to mention people without a Thyroid, they would lose a huge part of deiodinase and practically die, and I've know people living without a Thyroid for 30 or even 40 years.I think that it's very difficult (if not impossible) to become "euthyroid" again once the gland fails. There is no perfect substitute for the gland we've lost on the way. We have to learn how to live with it (better the Thyroid, than the liver or the kidneys for example).
not suggesting it is "ONLY in the thyroid tissue" ... deiodinase are in many tissues/organs.. hence why people with total thyroid loss don't die on Levo.
I agree that it's just not possible in some (most ?) people to properly replicate the original workings once the system has been messed with by thyroid loss /damage.
p.s am liking your "firewood /fire " analogy for T4/T3.
I used to rely on wood burning stoves for heating/cooking ... i once got impatient and put 3 logs of well seasoned (but slightly damp) oak onto burner ... no heat at all for an hour ... then all at once 'whoof' .... nearly melted the cast iron stove/chimney.... oops.
Have you had problems with taking T3?
Can I ask what are you taking for your hypothyroid?? Levo alone?
Wow! So…. you are on T3 only!I am finding it is working for me w only 50mcg daily( 20,20, & 10 at bedtime)
Me too, I am also on T3 only. Those of us who can take Levo and convert easily to T3 are very lucky, a lot uf us are not so lucky and cannot convert easily. Even when taking Selenium.
I was diagnosed hypo in 1999 and I was told that I couldn't be given anything but Levo to help me. I wasn't given the option to see an Endo either.
At the end of 2019, I got bolshi, joined Thyroid UK and began to learn how to treat myself on this Forum.
Last year I began to take T3, I asked my GP to oversee my trial, but he refused and told me that T3 was an illegal drug and I was not to say those words in his presence again ??? Sounds like a knowledgeable GP?? One wonders whether he knew what T3 was??
This GP, who bought the surgery, waltzed in and decided if my TSH was high, then I was overmedicated and he needed to reduce my Levo each time! And yet he thought T3 was an illegal drug???? What rot is that?
I started taking a 1/4 of a 25mcg tablet of T3 once a day and gradually raised the dosage. I didn't see any difference until this summer, when my hair started to regrow. I hadn't realised how much hair I had lost until then.
We don't need to be scared of T3. Especially if you are taking it under medical supervision. Many of us are not well on Levo, it is a fact of life, it is equal to a poison to some of us.
I finally stopped taking Levo altogether a couple of months ago and I have never felt so well since well before I was diagnosed in 1999.
We are all different, I know if I need more T3 and I can tell if I didn't really need that last dose of T3 too. I use common sense and am learning to trust my own judgement.
T3 is necessary for life, the only active thyroid hormone. Levothyroxine is a storage hormone only. Even selenium can't help some patients to convert T4 to T3, as I had discovered.
I have a life with T3, I had none on Levothyroxine.
But I don't think it is for any of us to tell others what they should do. We have to learn what we need for ourselves, because each of us are different. No one has the same needs, from supplements to thyroid hormones, to calories, to our diet! We learn what our body's need and what does and doesn't suit us.
So encouraging to read!I did the same… slowly added… reached 60/day … now at 50 (20,20 & 10 at bedtime). I had been put on 125mcg levo but was too much… & did not stick with it….too harsh.
Then 75mcg w 10 T3…then 75 w 20 mcg T3. Finally… went slowly over to only T3… 3mos ago.
What does os your magic number? I f I may ask vs Levo dose?
I am on 2 1/2 tabs of Tiromel 25mcg daily.
I don't take any Levo at all. I was taking 50mcg Levo daily & I decided fairly recently, to try leaving out Levo and find I didn't miss it one iota!
is Tiromel t3 or t4?
BrybGlas said "I don't take any Levo at all." - Levo is a collquial way of referring to levothyroxine - which is T4.
Tiromel is Liothyronine - T3.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
From Dropbox:
dropbox.com/s/shcwdwpedzr93...
From Google Drive:
drive.google.com/file/d/12N...
Interesting. We have Tirosent which is an alternative to Synthroid/Levo. We do not have Tiromel only Cytomel
You do, though, have numerous other liothyronine products:
Cadila, Greenstone, Mayne Pharma, Sigmapharm, Sun, Teva and Zydus.
Tiromel is Turkish.
In CA…. only cytomel & liothyronine by Mayne.
McGuff are based in California and offer SigmaPharm.
Tiromel is aT3. Levo or Levothyroxine is T4. Both synthetic hormones.
Got it!
It took me a while to get it, I can confirm that for certain. Thank God for the Admins on this Forum, I really don't think I would be alive now if I hadn't soaked up their advice like a sponge.
They made more sense than my GP has ever done.
You are so right! I was at wits end… & everyone here gave me confidence with their knowledge & experience to question . Thank you for all of your help as well.
Coincidentally… I was on 112mcg levo… now very happy 50 mcg cytomel/liothyronine. Tried 60mcg liothyronine…. too much… so back to the current 50mcg liothyronine.Totally agree w you… & most grateful for your post.
T4 to T3 convertion mainly happens in the liver and gut. So, if You have poor gut or liver function you won't be able to convert well. What i'm saying is that it might be a good idea trying to improve these 2 functions as well as possible nutrient defficits before starting on t3 pills. That's what i'm doing now (My t3 is just 2,6 in a 2-4,2 range). If that doesnt solve it, then (only then) i Will consider t3 pills).
Oh, I thought you were telling us that T3 was not a good idea??
It depends on the particular case. But since the long term effects of T3 therapy are not well known, it is a better idea to improve your liver and gut function naturally (eliminate gluten, include zinc and selenium, add cilantro to the meals, exercise your body, optimize your nutrient levels, ESPECIALLY FERRITIN, etc) and see what happens first. The energy demands of the body are highly variable (a lot of factors come into consideration here: winter or summer time, diet, sports, etc). So, if You add FIRE (t3) without needing it, you could have consequences in the long term. I would consider t3 ONLY if all the above measures, and AFTER a certain period of time, don't have any effect on my body.
You mention you had or still have myopathy. After you started taking levo did symptoms when away or some still remain
I still have residual symptoms. That's why I'm trying all these measures:
Reduce stress and therefore, Cortisol levels
Exercise 20 minutes every day.
Add Cilantro to my meals
Eat pumpkin seeds (zinc) and brazilian nuts (selenium) every day
Eliminate gluten (EVEN if i'm not celiac)
Improve ferritin levels (I'm now at 13!).
Drink celery juice 2 o 3 times a week.
As I said before, I Will consider T3 ONLY if after several months and with all these measures, I still don't see any improvements. T3 is a tricky thing. It can have nasty consequences over time.
Thank you 🙏🏻
Oh, interesting. Long term? I have been hypo since 1999. I am 69 years old now.
Thanks to the very knowledgeable Admins and members here I have never felt better
Thanks so much for your information. What would I do without this Forum?
Good for you if t3 suits You! I'm just saying I will explore other options before. Convertion has nothing to do with Thyroid. It takes place in peripheral organs.
Oh, and I forgot to mention: STRESS increases the production of the hormone Cortisol. And Cortisol REDUCES convertion to T3. In the same way, exercise makes T3 work much more efficiently on the muscles.
Again, I must have missed the stress bit. Cortisol, hmm not sure if I know much about that, sorry.
I don't believe that exercise helps personally, but I do walk an hour a day, on a mountain in Wales, where I live, unless there is a raging gale going on outside. I go to Pilates, Tai Chi and yoga for an hour each per week. Maybe I'm doing something wrong?
However have you learned so much??
SlowDragonAdministrator
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
hypothyroidmom.com/how-to-l...
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
There was an article posted by Wellness about the possible side effects of thyroxine if you care to look it up. reference.medscape.com/view...
Yes, terrible headaches, and palpitations, I have come off them with my doctors say so, and because im just borderline I just have regular blood tests now, and it is also a good idea to change brands as that has also worked for some people. My doctor also said maybe I should look into the more natural ones but obviously he can’t prescribe those, so if I start feeling worse that is what I will do, I do wish you well x
Hello Nancypapa, I would definitely talk with your doctor to see if your migraines are directly related to your levothyroxine. You are on a fairly high dose but only your doctor can determine what dose you should be on. Be sure to advocate for yourself though and ask all the right questions so you understand your treatment. Good luck and I hope the migraines go away.
I did. I have seen three endo so far one of them believe all my symptoms are do to my thyroid. The one I have now doesn’t think so and the other one just wanted my thyroid removed. I’m so glad we have this forum to help each other because doctors don’t know what to do with each individual we all feel different and they just give medication and looking for normal results besides what symptoms we are having. I have to take 150 mcg because here in America they go by weight and I have gain a lot like 25 ponds in a year 😥
nancypapa, I don't get your comment about "here in America they go by weight" because in general, that is false. I live in America and am part of thyroid groups with thousands of thyroid patients and no one that I know of is dosed by weight. And in America, endocrinologists are the worst doctors to see for the thyroid as they know very little. If you got a good one, you're lucky.
Hi!Sounds like the side effects are making you wonder?!! I had issues with 25mCg tabs of
levothyroxine…&!the dr cited the dye. I was having trouble with my throat tightening.. I seemed better on 75mcg tabs. However, the inactive ingredients do vary from strength to maker. Compounded levo can be an alternative but expensive if available…. however might solve your issues. I stopped levo & now on only liothyronine…. hoping my dr will allow me to continue as I feel great after 3 mos of adjustment.
Are you new to thyroid medications or just levo? Maybe it is the strength? Or, your vitamin levels might be a contributing factor?
Hope you have reached out to your endo/dr for relief/guidance.
Wishing you all the best as a fellow patient just wanting balance too!
I think is the strength because of my weight they put me on 150mcg here in America they go by weight to get the patient to a normal range of TSH, t3 and t4 but also my thyroid antibodies are way too high I was reading and selenium may help with the antibodies, I will give it a try.
Im just taking vitamin D and fish oil
I am in California! Belmar Pharmacy( Golden , CO) will compund … in order to try without so many inactive ingredients.
Wowww thank you
Tina the Pharmacist got pressed from my dr… for both levo & liothyronine!Also…. bio identical creams.
Is compounding preferable and/or less expensive than Tirosint or Tirosint Sol?
If not, wouldn't it be as well to go for one of those products ?
I had problems with heart palpitations and anxiety until I changed my levo. It was all down to the fillers.
I am not sure if this helps but once I was on a high dose of levothyroxine - 150mcg to be precise. I had to be on a high dose because that was the level that enabled me to produce any T3. I did not have any side effects but it supressed my TSH so my Endo said that that was unacceptable and reduced my Levo. My T3 production then disappeared and I felt ill again. My Endo said that there must be something else the matter with me and go back to my GP to get the problem diagnosed! The problem was actually her ignorance and it was 15+ years ago and I am still around and well. Well, by this time I had wised up to this subject, read a lot and experimented. I sent off for some T3 and I took that along with a lower dose of the levo. Later I switched to NDT and never looked back. So, what I am suggesting is that you lower your Levo and introduce a bit of T3 (assuming that it isn't the fillers which are causing tour problem). You will have to start the great, time consuming juggling act with a lot of blood test measurements to begin with but you will get there. Most of us on this site have been through the great dose juggling and blood test procedure, but it is worth it in the end, you get your life back.
Hi!Curious which NDT do you enjoy?
Thx!
I managed to get Armour thyroid. It's manufactured somewhere close to Ohio. If you e-mail or telephone them they could tell you how to get it where you live. When I got hold of T3 only I got it from Unipharma in Cyprus via the Internet but I am not sure if they still exist there. Armour is a bit expensive but I cut out half of my wine consumption to pay for it, it runs at about $50 per month here - a few less bottles of wine per month also helps I think!
Happy to hear you like it!!!Thinking i might need w an add on of T3!
It is expensive!!!! Do you only take Armour?Mom took one grain for 70 years!!!
Thank you very interesting 🤔 I think it will help because this endo now told me the same thing. There must be something also wrong with you omg they are lost. I said no I will investigate because I don’t think there is nothing also wrong with me
My GP and your Endo would be very good pals, mine thought high TSH was caused by overmedication and your Endo wanted to raise your TSH by decreasing yours
The difference is that my GP has been doing it regularly, until last September I think it was and I refused to decrease it, because I knew better after almost a year of following messages on here.
I can only say thank God for TUK and this wonderful forum and the fantastic admins who work so hard on it.
Where would we be without them?
Another thing you could do before adding T3 is to make sure your selenium level is optimal. If you have no (or marginal) selenium then you will not generate any T3. Selenium is the catalyst that causes T4 to drop down to T3. This is an easy thing to do, just go buy a supplement (you don't need a prescription) or eat a couple of Brazil nuts per day. Those are easy things to obtain, T3 is a little more time consuming.
Too late, I am on T3 only now. Dropped Levo a couple of months ago and I haven't missed it one jot. I am on top of my supplements as well. Those were the first things I changed. In late 2019. I sleep better, well..............I sleep! I used to have 1 good night in about 3 or 4 awful tossing and turning nights. I occasionally have a rough night now.
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