Coming 0f Levothyroxine

[Goldengirl69]

I can't take any more , I've been reacting severly to Levothyroxine for years. I've been to Doctors before few years ago , and they don't help me . It was like they in denial. I'm so Sick .now I have to come off it . Its made my throat Swell , going Me severe diareer , severestomach pain. Migraines. , ears like bombs, severly inflamed and. Losing hearing. I don't know what to do. Feel I will die , if stay on this. I'm going to try for Tyrosint now , but so Scared , it won't work. Help . 😪😪😪😪

[helvella Administrator Thyroid UK]

I don't think you have told us which levothyroxine you are taking.

I think I'd suggest you try the easier path of switching to another make.

You said you are taking 75 micrograms - is that a single tablet? If so, that will be Teva and a number of us find we do not tolerate it.

You could ask for a prescription for 50 and 25 microgram tablets and try other makes. (Easiest if they are two separate prescriptions.)

Advanz (Mercury Pharma/Eltroxin) and Wockhardt offer 25 microgram tablets.

Accord (also supplied as Almus) and Advanz (Mercury Pharma/Eltroxin) offer 50 microgram tablets.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

helvella.blogspot.com/p/hel...

[greygoose]

What you are describing here sounds more like symptoms of hypo, rather than side-effects of levo. So, could be you're under-medicated. How much are you taking? And which brand? Have you tried more than one brand?

Or, it could be that you're not converting very well, and have low FT3. It's T3 that causes symptoms, when it's too high or too low. So, not sure you'd be any better off on Tyrosint, because the active ingredient is levo, too - i.e. T4. It just has less fillers so is more easily absorbed - as I understand it.

That's not to say you shouldn't try it. Of course you should, if you can get hold of it, but it's not easy to find in the UK.

Do you have copies of your blood test results? If so, post them here, with the 'ranges', so that we can better understand the problem. We might be able to make some helpful suggestions. Could be that your doctors are not doing the right tests, or not understanding the results when they do do them.

[Lalatoot]

Oh I felt the same so I decided it was the levothyroxine. I tapered it down to 25mcg per day and I felt fantastic. All symptoms gone ......,.... for 3 months then I was very ill and very hypothyroid.Turns out it wasn't the levo, it was that I was on too low a dose. The endo I was with was lovely but useless and had me undermedicated for 4 years.

[Goldengirl69 in reply to Lalatoot]

Thankyou Lalatoot . I'm sorry u had to ho through same. I don't know what's wrong with these People , they Supposed to help us. What werd ur Symptoms. Did u get a swollen or sore throat. And gives. Bad stomach. I've suspected for years that I'm on to low medication. But they not help me , when j went back few times. Now I'm go mad. For 3 days , I come of Levothyroxine, and all pains and bad symptoms went right down. Then today I went on it again and it felt like likei dying . Unless coincidence. My head is so dementia. I just remembered, doctor I feel she play with me , she say , I think ur Thyroid to High a few times. And dosent do anything. Then when went to hospital as my ears hurt from this. The lady doctor say , ur Thryroid is to high. I get unsavoury people in life I feel , when it comes to doctors. Someone on here nicely keeps tell me to get my Levels tsh done . I can do it Privately I hope . I need and will do thos right now. It my only way to know, the Situation.

[greygoose in reply to Goldengirl69]

You need more than your TSH tested. You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Details of private testing companies here:

thyroiduk.org/help-and-supp...

Doctors tend to know next to nothing about thyroid, I'm afraid. I have never seen a doctor that helped me, most make me worse. So, I self-treat. Telling you that your 'thyroid is too high' is absolutely meaningless. Presumably the meant your TSH was too high - although some of them don't seem to know the difference between high and low! - in which case, the solution is to increase your dose. Have you ever been on a dose higher than 75 mcg?

[Goldengirl69 in reply to greygoose]

Thanks so much greygoose . , for all this valuable info .especially what j need tested. Interesting u say about folate , is that folic acid ? The doctors gave me a 3 month Course back in April. Finished it now. Not even told me why I need it , lol. I suspect I need it. A lot of the time so I still take it few times through week. Thanks so much for Private test companys . I've seen them on and off on here the Thyroid test conpanys. But it's so nice , u have obviously give me tye best ones. And at hand. I wonder why docs don't care or seem to know nothing about Thyroid . Now I know. Xx

[greygoose in reply to Goldengirl69]

Folic acid is synthetic folate. But it's not the best absorbed form of folate. When buying folate look for methyl folate. It's one of the B vits: B9. I presume he prescribed it because he tested it and the result was low. It's not a good thing to have low folate:

my.clevelandclinic.org/heal....

But what doctors never seem to know is that just taking one of the B vits on its own doesn't help much. They all work together so need to be kept balanced. So, now that you've probably raised your level a bit, it would be good to go on to a B complex, containing methylfolate and methyl cobalamine (B12) and continue that forever. Because when you're hypo, levels will just drop again, of all the Bs, if you don't take a maintenance dose.

Do you know if you had B12 tested when your folate was tested? They're usually tested together. Doctors rarely test all the Bs - and there are 8 of them. But I did have all mine tested once, by a neurologist, and they were all low.

Doctors know nothing about thyroid because they learn next to nothing about it in med school. But what they are told in med school is that it's no big deal and that we're all a bunch of whining hypochondriacs making a fuss about nothing!

[Goldengirl69 in reply to greygoose]

Hi Grey goose , Thankyou for all the Brilliant information so kind of u. I see Folic Acid is A synthetic form. I wonder why doctors give that , instead of Methyl folate ? . Yes the doctor Prescribed it because in the blood test , it was low folate. They not even say, why reason it maby low , crazy. I'm shock , we need to take all bs . How on earth , can one take 8+ and other tablets in a day. The doctor gave me 5mc a day . It say I should take 400mc a day , isn't that a big difference ?. Yes I'm very ill I think it's due to not taking these 2 things, I should of been in hospital,. But hospital disgusting and keep send me away , say lies, there's nowt wrong with u .so bad.i m been take folic acid about 2 times aweek. Now I need take every day , is that correct , and same fir b12. Wow all ur b vits were low , that's saying Something, in name of Thyroid. Hope u got it all sorted now.

[greygoose in reply to Goldengirl69]

Doctors give folic acid rather than methylfolate because it's cheaper!

How on earth , can one take 8+ and other tablets in a day.

You take a B complex, which is one or two pills a day.

For example:

amazon.fr/Super-B-Complex-v...

The doctor gave me 5mc a day . It say I should take 400mc a day , isn't that a big difference ?

Not sure what you mean by 'mc'. Do you mean mcg or mg? There is no mc. The B complex I linked to above contains 400 mcg (or µg, which is the same thing).

Nutrients are usually low/deficient with hypo because having low T3 causes low stomach acid, so you can't digest your food and absorb nutrients correctly.

[Goldengirl69 in reply to greygoose]

Sorry my head again , mcg I meant. Yes I have hears before nutrients don't absorb in us Thyroid Patients. So how can I make my nutrients and tablets absorb in me. It possible this why feel like dying as levo , not absorbing. I don't know for sure tho.

[Goldengirl69 in reply to Goldengirl69]

It's all such a nightmare .as can't be on levo. Need to check my tsh. And I'm going on levo and jump off it now started to , as I just want some good days. How can I check my tsh , if not on it proper. It all so horrifick. 😮‍💨

[greygoose in reply to Goldengirl69]

To improve absorption you need to improve stomach acid levels. You can do that by taking Apple Cider Vinager in water before a meal, or HCl and pepsin tablets. Could be that poor absorption of levo is your problem but your test results would show that.

It's not about TSH. That is the least important of the three readings. The most important result is FT3, because it's T3 that causes symptoms. But, you also need FT4 tested. TSH by itself won't tell you anything. I gave you the link to recommended private testing companies. Use one of them to get full thyroid testing, as listed above.

[Lalatoot]

The obvious thing for me was my bloated face. I looked like I'd been in a boxing match. My throat hurt and swelled and I often lost my voice. My resting heart rate was higher than normal and I had irregular heartbeats. I lost weight. I was tired and I couldn't think about anything. I ended up mostly in bed .

[Goldengirl69 in reply to Lalatoot]

I see . All same as mine . My list goes on forever . Severe joint pain, migraines, swollen stomach ect

[Carrie234 in reply to Lalatoot]

Lalatoot I'm interested that you were undermedicated for hypo and therefore felt really bad, but when you reduced the medication right down, you felt fantastic for 3 months, before then feeling very ill. Why was this, why when you were undermedicated and reduced the medication, reducing it made you feel way better for 3 months? many thanks

[Lalatoot in reply to Carrie234]

Quite a few folks on here speak of the same. It seems to be that when you stop or all but stop levo you feel great for a short while. But then the lack of hormones really builds up and you are very ill. Nobody has a scientific explanation as to why this is .

[Carrie234 in reply to Lalatoot]

Thank you Lalatoot for replying! I would really like to understand why this occurs, why feel fantastic after stopping medication when undermedicated (but then when adding back the same medication to a higher dose, finally the hypo symptoms resolve). If anyone knows why this occurs, I am all ears.

[Lalatoot in reply to Carrie234]

I had to add 7.5mcg liothyronine t3 to my original levo dose to overcome the undermedication in the end.

[Carrie234 in reply to Lalatoot]

So your T4 dose ended up being the same as before, but you needed to add 7.5mcg T3, if I understand right. Makes one think that the T4 alone was somehow giving you a bad effect, possibly because not all being converted. And not that adding T3 made you then convert the excess T4, but that the added T3 created a balance that your body liked more. I wonder what would have happened if you then kept the T3 the same but reduced the T4, whether you would have felt even better or started getting worse again. Not suggesting you do this of course, just thinking aloud. Maybe a pool of T4 that is sitting around and the body not knowing what to do with it (not converting enough of it), creates bad symptoms. If anyone has any science on this would love to know.

[Lalatoot in reply to Carrie234]

T4 does not pool. It gets converted into reverse T3 which then has its own receptors and pathway in the body.

The t4 was not causing a bad effect. Too high an ft4 might cause a bad effect but my ft4 was not too high - it was only 60% through range.

My problems were 2-fold. For the first few years I was kept on too low a dose. Once I got on an adequate dose it became obvious that I was poor at converting t4 to t3 so continuing symptoms were due to low t3. I added 7.5mcg liothyronine to my levo dose and that brought my ft3 up.

It took me 2 years of adjusting doses to find out the dose of levo and t3 that I needed together to work well for me. I have been on lower doses of levo and higher doses of t3. Lower doses of t4 made me ill again.

There is lots of science behind this. Read up on the posts on this site and post questions.

[Carrie234 in reply to Lalatoot]

Thank you, I really appreciate your reply. I was just wondering why it is, that sometimes when people stop (or all but stop) levo, they can feel fantastic for a few weeks or months. I wonder about the mechanism behind that time of feeling great. If anyone knows, I'd be really interested. Not commenting on your particular case, but it seems like somehow the body is converting into T3 better during this honeymoon period.

[Carrie234 in reply to Carrie234]

Anyone wondering about this, I'm finding this thread quite informative: healthunlocked.com/thyroidu...

[Wetsuiter in reply to Carrie234]

I don't know the answer, but the way I 'explain' it to myself is that the body goes into overdrive trying to protect you from the lack of hormone when you initially stop taking it. Then that gets to be too much work, and the body finally conks out.

[Goldengirl69 in reply to Carrie234]

I don't know what's going on. I don't know if it Thyroid or food , or levo. I come of levo for 3 days , not months , I need give longer . And I felt better , hives went down and pain went down. But I feel. So I'll headaches and memory so bad. I cant really fathom things out.

[Goldengirl69 in reply to Goldengirl69]

It could also be lots of things

[Carrie234 in reply to Goldengirl69]

I really sympathise and hope you feel better soon Goldengirl69. Like some of the others on here are saying, I think it's a great idea to keep a thyroid diary of everything going on for your own records: blood test results, how much medication you are taking each day, and any symptoms. Your GP practice should give you your results if you ask for them, and there are good private tests like medichecks who will test just about everything to do with thyroid (not just TSH). Monitor My Health is another one I have used.

[Hidden]

Hi Goldengirl69

I'm so sorry you're going through such bad reactions along with no support from your drs.

I haven't any experience with levo and only a few months on NDT. Yet, have had some of your symptoms.

Stopped NDT after building up too high a dose & stopped coughing, concentration has improved, hand shaking has disappeared, breathing has become clear, fatigue disappeared, mental clarity returned, positivity...but tinnitus returned almost immediately.

And two weeks later fatigue started to be noticeable and this morning I was back on the sofa, couldn't keep my eyes open, sleeping the morning away, couldn't get warm, no energy/motivation, slipping into depression, aches & pains, headaches, stomach problems, pins & needles all returning. So, back to the beginning and waiting to see dr & if he'll prescribe NDT without the filler microcrystalline. (I couldn't start the standard levothyroxine because of maize starch fillers.)

Think the excipients (fillers) can be the cause of a lot of reactions.

Would you be able to get your medication compounded with fillers that you wouldn't react to?

Or perhaps, Goldengirl69, the tyrosint won't give you the same reactions.

I'm sure other people on here will be able to give you their experiences with tyrosint. 🤞

[birkie in reply to Hidden]

Hi Diorth❤️

This is the same problem I'm having since full thyroidectomy in 2019, first drug T4 which contained lactose didn't realise all my horrible symptoms were because of this drug, gp just kept referin my back to the fact I'd just had a large operation so they symptoms were of that.

When in fact it was the t4🙄

Got it changed to T4 lactose free that was hell trying to obtain it, but my symptoms remained, my T3 level was low T4 never really moved it much and after months the endo said I had an absorbtion problem, she put me on T3 great I thought, but still symptoms remained😢 found out they contained lactose🤦‍♀️ gp changed them teva T3.. no change still had really bad symptoms.

I've been chopped and changed from T4 to T3 by my surgery since 2019 😠 I finally got on Roma T3 in Oct last year, still symptoms persist.. Cramps, diarrhea, stomach pain, burning sensation in stomach, inflammation in bowles headaches wanting to be sick, I just feel like I'm dying on this drug... I have colitis and are lactose intolerant.

I'm not over or under medicated, my last bloods done in July show TSH 1.77 ..T3.. 5.4,) technically I should feel very well on this and I suppose I would if I wasn't having all the stomach and bowle problems, I've also come of both T4 and T3 to see if the symptoms resolve... They do everytime, but T4 was by far the worst, I just did it again this month for 5 days, 4 days I felt so well, and by day 2 I had a formed motion no diarrhea, cramping, pain, inflammation no burning in the gut no bad head no feeling sick, went back on and everything has returned, today I'm in bed with the headache that sicky feeling inflammation in bowles, runny stools, and I know from experience that the more this drug gets in my system the worse I'll become 😢

Just hanging on till Monday morning I'm going to my surgery armed with the photos of what I'm passing, and belive me they don't look nice😔

[Hidden in reply to birkie]

That is so bad, birkie. Hoping something can be done for you at your next dr's appt.

🙏

[birkie in reply to Hidden]

Yeah just sitting here in bed... Realised its bank holiday Monday 🤦‍♀️ and sometimes after a bank holiday my surgery only does the Tuesday afternoon appointments 🤦‍♀️ ho well just gona come off the t3 again 👍

[Goldengirl69 in reply to Hidden]

Thankyou .Dioryth. you ard going through hell times also. You have all loads of symptoms same as me . I get migraines, severe Stomach pains and diareer, tinnitus , coughing. And lots more. Do u get painful red ears. ? And lower back pain ?I'm going for a Mri tommorow on my throat so worried they won't see anything. My throat Swollen as Hell. I have hives to. Can't do anything. This no life .feel I'm dying. How long can I come of Thyroid drug for , before it gets dangerous? I don't know why this so Cruel and not Sought out , why the heck dont they make Levo and all thyroid Meds without fillers and without Lactose.

[Hidden in reply to Goldengirl69]

Everyone is different, Goldengirl69.

Don't get the red ears and the lower back is not hurting (tho a shoulder has starting aching, again) but that reminded me of the hot-face flushing has come back. Had rashes before starting on NDT.

I don't know what is safe for you. Goldengirl69. But I am sympathising with the awful situation you are going through.

Please check with your dr for any changes to your medication/situation.

[Goldengirl69 in reply to Hidden]

Hi Dioryth , just like to say, Sorry u going through hard times to .I hope you and me get this Sorted. X

[Hidden in reply to Goldengirl69]

We will, Goldengirl69, we will with the helpful people on this forum. 🌞

[Lovecake]

I get really bad migraines when my thyroid levels are too low. I hope you find something that suits you very soon

[Goldengirl69 in reply to Lovecake]

Hi lovecake, do u get a feel of brain swell with Migraines . Or do u get hives at all. What med are you on ? X

[Lovecake in reply to Goldengirl69]

I feel like it gets swelling as you put it at the base of my skull/back of neck during an attack.

I’m pretty certain I don’t get hives.

I have Imigran prescribed by my GP. (This is the original, most people get the generic sumatriptan). It works well most of the time. Nothing works when my thyroid levels drop.

I am seriously considering asking the GP for more help. Even a referral to a neurologist. But it might take months. I might have to find the money to go private 🙁

[Neon65]

Oh my poor dear, I hope you can find some answers, try a number of different doctors, as this helps sometimes..

I feel your suffering, but you need to keep fighting, to get answers, so easy to give up.

Sending big 🫂

[Litatamon]

Have you had your b12 levels tested? If you have had this done please check the number on your labs when you get them, not just whether the doctor says you are fine.

I realize you feel better when not on thyroid medication so it is probably a dosage or additive issue, but it would be helpful to cross off b12 deficiency/pernicious anemia nonetheless (I had many cognitive issues before my b12 deficiency was found and treated, including memory loss)

[Goldengirl69]

No i not had my b12 tested. But it's in Pipeline. Do normal doctors do that .my doc couldn't care a less. Oh I never listen when doc says u fine on anything any more, as know it not true. Yes I feel better when of Levothyroxine, it gives me severe stomach pain and incontinence. Headaches. Severe body aches. Yes I had wondered for Pernicious Anemia. / I certainly have the folic acid Anemia. / guess I'll have a test for that sometime also. Everything is so slow with me , as so I'll, and brain dead.