I'm so sick , levothyroxine is hell !!

[Goldengirl69]

I'm so Sick, how on earth can they make a Drug that can kill you . endless Mucus , and now have Chest infection. Severe aching all over . Bad heart . Foggy head. Sinusitis. Painful ears . And more . This is nothing but a severe reaction to Levothyroxine, but I'm Expected to take it still !!!! They just Palm me of years ago with Amytriptyline for the Pain. Even that's stopped working. I feel I need be on heart meds now . And try taking All sorts of lemon water and honey . Bronchial medicine. But nothing works . How can it if , having constant severd bad reaction . So Sad . I feel endless life of Bedridden , breathlessness, severe pain. Why doctors don't care , it so bad . It's there duty to Care . 😢 😭 💔

[Buddy195 Administrator]

So members can better advise, can you share your most recent thyroid blood test results with us (with ranges)

What dose of Levo are you currently taking? Is the brand always the same? Certainly some people have an allergic reaction to some brands, so it may be worth asking for a different type.

Have you had any tests to determine if you have a heart condition or are you worried that you might have a heart issue?

[SlowDragon Administrator]

Looking at previous posts

A year ago you were only on 75mcg Levo and TSH too high and Ft4 too low

So on inadequate dose levothyroxine

Was dose Levo increased to 100mcg

Also you were going to test vitamin D, folate, ferritin and B12

Please add most recent blood test results and ranges

ALWAYS test early morning,ideally before 9am, only drinking water between waking and test and importantly last dose levo 24 hours before test

Which brand of Levo are you taking

Presumably your hypothyroidism is autoimmune?

Approx 50% of us with autoimmune thyroid disease develop lactose/dairy intolerance

Sinus and mucus strongly suggests dairy intolerance

Are you on dairy free diet?

Also need lactose FREE Levo

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get prescription written for Vencamil

healthunlocked.com/thyroidu...

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

[Goldengirl69]

Thankyou for geting back Slow Dragon. But it's not this . When I don't take levo pain goes . When I take it have Severe aching Pain , diareer. Watering eyes, severe headache and Mucus. I'm in a trap , asthere no other medicine here in uk . 😢

[tattybogle in reply to Goldengirl69]

tagging birkie for you goldengirl, she has had similar difficulties with not tolerating levothyroxine and has recently found a solution that seems to be working much better for her , if you click on her name , you can read her posts/ replies .

[SlowDragon Administrator in reply to Goldengirl69]

It’s a common issue that it “appears” to be the Levo

But you need to be taking some replacement thyroid hormone

Many of us have found out the hard way……that stopping levothyroxine is NOT the answer

Yes initially it can give relief to symptoms, but hypothyroidism rapidly gets much worse

Symptoms are more likely because of being on inadequate dose levothyroxine

Which brand of levothyroxine are you taking

How much are you taking daily and please add latest results and ranges for

TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12

[SlowDragon Administrator in reply to Goldengirl69]

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should always be below 2 on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

If, once on adequate dose lactose free levothyroxine with GOOD vitamin levels and dairy free diet

If symptoms not resolved then ……look at either adding T3 on NHS or private prescription

Or changing to NDT on private prescription

[birkie]

Hi Goldengirl69❤️

I was much the same on the synthetic versions of T4, T3 although mine was gut / stomach issues, and like you my GP and endocrinologists just fobbed me off giving me countless brands of T4, T3, which never worked I honestly felt like I was being poisoned. 🤮

Now I know some people can take T4 [ levothyroxine] without any issues, my mum was one such person , but I couldn't absorb it due to server diarrhea, stomach cramps and feeling sick and actually vomiting the stuff back.

I also had very bad headaches on it, to cut to the chase I just felt better off it, although I need some form of thyroid hormone as I have no thyroid.

I gave up on my GP and endocrinologist last June and my son got me a private prescription for ndt [ natural dessicated thyroid, pig thyroid compound].

Rosewaylabs.com.

I've taken it in small increments since July last year building up to one and a half grains now]...my hormones are all now in range with a good T3 level .

I've had no gastric issues or any other issues whilst taking the ndt .

But my son has to buy it as I'm disabled and can't afford it, but why should we have to do this [ the nhs DONT pescribe NDT] and you will as I have.. find it almost impossible to obtain it through the nhs😡.

But yet this hormone as restored my thyroid hormone levels, but my son has to pay😡.

The nhs are one big joke, my experience is they really don't care or want to help patients with a thyroid or thyroid medication problem, your told to take the T4 and go away 😡..flipping usless nhs😡😡😡😡

[greygoose]

Have you tried T3 only? Liothyronine (T3) is synthetic but it depends on whether or not it's the synthetic element or the T4 itself that is upsetting. Because if it's the T4, NDT might not suit you, either. It didn't me.

I too was ill on levo - was told by my endo that it was due to my 'negative attitude'! How's that for a brush off?!? But it really did make me ill, and on NDT I was even worse! It was only when I tried T3 only that I became human again. So, if you don't get on with NDT, it's worth trying T3 only.

[Alanna012 in reply to greygoose]

I made a joke here, and it's disappeared, sorry if it didn't go down well😬 My humour must be flat this evening!

[Goldengirl69 in reply to Alanna012]

Thanks so much for ur advice . I'll get back 2 u in a few hours . 😃

[greygoose in reply to Alanna012]

Sorry, didn't see any jokes.

[Alanna012 in reply to greygoose]

I must of not pressed 'Reply' properly! It was a quip about whether you're 100% sure it wasn't the improvement in your attitude per your good doctors advice, or the T3 that made you better!😄 It made more sense the first time I wrote it though...

[greygoose in reply to Alanna012]

OK. But by the time I finally got on to T3, that endo was long gone. I'd given her the boot years before because she was incredibly useless! lol

[Alanna012 in reply to greygoose]

I guess by giving her the boot, your attitude did indeed improve😂

Imagine paying for ridiculous advice like that!

[Alanna012]

I hate levothyroxine mono-therapy. My body can't handle it without some added T3 and I react to quite a few brands now.

In one of your recent posts you say you are on 75mcg Levothyroxine, which I personally think is the worst dose to be on even if levothyroxine mono-therapy makes you ill. So even if you feel horrible on mono-therapy 75mcg (and for others even 100mcg) you're often still better off feeling horrible, but with a higher dose.

The amount of 75mcg, is often just enough to get your production of thyroid stimulating hormone to reduce, so it looks good to doctors because now on paper your TSH is going in the right direction, it's hovering somewhere between 2.5 and 4.5 maybe. Doctor thinks 'job done' and declares you well. But you are not getting replacement levels of thyroxine so you're under-replaced. And if you are under replaced for a prolonged time, that eventually results in a plethora of systemic hypo related symptoms including an inefficient metabolism, and lower core temperature, you can get a feeling if internal wetness with mucus non-stop and the chronic sinusitis. Your immune system also becomes compromised

This happened to me when I was left on 75mcg Levothyroxine. I had chronic sinusitis for two years straight and every allergy became magnified by 10. It was misery. I was on steroid nasal sprays several times a day with a netti pot to rinse and felt hot, flu like symptoms with headache and a constant low grade fever which is horrible to experience every day. I thought it was all the levo. To be sure the levo caused me problems, but it was the dosage that effectively was only serving to block my natural production of T4 whilst not replacing it with any decent level of thyroxine that was responsible for some of those sinus, tinnitus, flu like symptoms.

An increase, even a small one could help.

[SlowDragon Administrator in reply to Alanna012]

Very well explained…..Thank you

[Wua13262348 in reply to Alanna012]

I think you have explained to DippyDame why she is undermedicated on the T3 only dose she is taking and needs to increase her T3. (Although you are talking about Levo T4, I assume the same principle of being under-dosed applies to her T3 only dose) She posted previously re. long term chronic sinusitis etc. So tagging DippyDame to read your reply to Goldengirl69, as I know she would like to read that a dose increase got rid of your long term chronic sinusitis.

[Goldengirl69 in reply to Alanna012]

Hi Alanna , thanks for this info. I'm Seriously ill. I don't know if I'm having a bad reaction to Levothyroxine or underdosed. It's interesting what u say about Internet Wetness . And lower core Temperature. So I'll, I get extreme fever and Chills , hands going Purple . The Doctors aren't interested they just Ridicule me . I feel they want one dead actually. I have Sinus , tinnitus and Extreme Flu Symptoms. To point I feel I've had Phemonia , but keep raking endless Garlic vits , or Oregano vits at different times. Thankfully I feel Pheomonia has gone . Just flu , it's horrific. My mind has become Severd dementia , and start to think it's the Levothyroxine I'm reacting to . I feel in utter despair , as am in a trap . My bad head means I've even been taking less than 75 mg . Just 50mg for fear . But not to many years ago , I'm sure I even took 100mg on ocassions and did feel lots better . It's awful I'm on my own , and got noone to remind me I need to take this at much higher dose . I notice if I went doctors in life with Partner , I got help and truthfulness. But if on my own Ridiculment and beyond . It's not normal or Rightous. . I even put big notes on my bedroom wall . But still ignore it lots. I'm in fear of dying . I got 2 friends , but online . I don't feel they would take me serious if I say please remind me to take 100mg or more of Levothyroxine a day , as my head is Like Sawdust . Thanks . Stella.

[Goldengirl69 in reply to Goldengirl69]

I haste to say , it's certainly nit in my mind , just took another 25mg . I'm on 75mg now . Feeling colder . That's not a good thing Surely ? Stella

[Alanna012 in reply to Goldengirl69]

Sometimes you feel colder after a dose change and it can last for several days. I actually have no idea why it happens. It happens to me when changing doses and brands of liothyronine NDT or T4. Keep going, it should eventually pass and you get warm. I completely understand the difficulty, frustration and profound anxiety in dealing with doctors on this issue. Effectively you don't have a doctor in working practice, because your experience is being dismissed in favour of the test results. It is distressing, particularly when you feel like your life is ebbing away and a GP keeps repeating that you are well. This has been a consistent experience for me and not even bringing in my own test results to the GP showing a highly elevated T4 with T3 scrapping the bottom of the range was convincing enough for the GP to accept I wasn't converting T4 into T3 adequately. So THEIR test results were authoritative, but my test results were dismissed! Their training in this topic is abysmal, so they dismiss T3 and they dismiss your antibodies. Getting a referral to endocrinology is also near nigh impossible in my area and for many others. So I agree with you bringing in a man to try and get heard. Unfortunately that's what we have to do sometimes.

I completely understand feeling rubbish on the Levo. I have spontaneously decided to come off my levo altogether on several occasions because I felt so awful on it, only to go (usually crawling, as I can't even walk by that time) back to the levo, and that first swallow of the Levothyroxine after weeks of hormone starvation is the sweetest taste of poison ever😂 Of course it doesn't last.

If you have a phone with an alarm, you can set a ringtone or calender notification for the morning with a note "100mcg Levothyroxine". If like me, you're so bad on Levothyroxine that even that prompt will go over your head, you can set another reminder one for a few hours later. And another at bed time, in case you forgot that one. Or tape a note to the inside of your cupboard door for cups or plates or spices. (I prefer the phone though because 'detail and attention blindness' is something you tend to suffer when you're feeling that bad and your brain is struggling for liothyronine).

Again though it's important that vitamin levels are decent. It can make a difference and brands are a bit of trial and error.