symptoms of levothyroxine intolerance?

[Eddie83]

The recent post by tamihotpants reminded me that I have never inquired of the membership here, the nature of negative symptoms which some people get while they are on T4. So I will mention what mine were, and I hope others will tell me about theirs.

When I was first diagnosed with hypothyroidism, the doctor who discovered this (of course) started me on levothyroxine (T4). Within a few days, I discovered that using T4 was causing intense anxiety ... so intense, that it was impossible me to function at all, not even in the degraded mode I was in at the time. However, after being on T3-only for a while, I am now on T3+T4=12.5+100 and doing quite well.

What conclusion did I reach from this? My T4 intolerance was due to the fact that I had a very bad (actually life-long) case of gluten enteropathy, which wasted my gut and triggered Hashimoto's autoimmune thyroiditis. I first tried T4 in 1997, but had to go off it, and finally went off the MD reservation (to a naturopath) in 2003, who diagnosed me with non-celiac gluten intolerance. As of 2003, I had very deep nutritional deficiencies which were generating all sorts of symptoms, from the obviously physical (spinal degeneration, weak rib-cage, muscle cramps and weakness, need for constant chiropractic treatment) to the mental (deep depression, high anxiety, insomnia, terrible mood). It took another 9 years of experimentation before those problems receded, and I've been tinkering ever since to reach what feels like optimal health.

The bottom line on the T4 intolerance I had, is that deep nutritional deficiencies will make it impossible for the body to do T4->T3 conversion, and T4 that just sits there pooling, caused anxiety (in my case).

So if you have ever been intolerant to T4, what were YOUR symptoms?

[shaws]

I just felt more unwell than before I was diagnosed which I did myself as no doctor or A&E thought to test TSH. I, finally, forced GP and TSH was 100. On T4 I became even more unwell and thankfully to the internet I found Thyroiduk.org.uk and from then on slowly learned how best to look after myself.

It would be good if they would bring back NDT and let us have options. The Association should not make False Statements about a product that has saved lives since 1892 and contains all of the hormones a healthy thyroid gland would.

[Eddie83 in reply to shaws]

So are you saying that the only patients in the UK who get NDT, are those who pay for it themselves?

[shaws in reply to Eddie83]

As far as I know, yes. We used to get it prescribed freely but due to the 'False Statement' by the British Thyroid Association above, it was withdrawn. I think a private dotor could prescribe but you'd have to pay for the prescriptions. NDT also contains T4, T3, T2, T1 and calcitonin.

hormone-zone.com/blog/hey-t...

[Eddie83 in reply to shaws]

I did use NDT (as Armour) for a short while after I discovered I could not tolerate levo. But since NDT contains T4, I soon had the same impossible situation with it, that I had with levo. I eventually added in synthetic T4 after I had been on synthetic T3-only for 1.5 years. I imagine NDT would work well for me if I switched to it.

[SlowDragon Administrator]

My symptoms were slightly different, though the "anxiety" was physically completely crippling. Intolerance of Levothyroxine resulted in being immobile and in wheelchair. Propranolol enabled tolerance of very very slow increase in Levothyroxine, until on high enough dose Levothyroxine (125mcg)

The cause, just like youself, was hidden gluten intolerance.

Tested twice, twenty years apart, for coeliac disease. Both negative.

By 2016 increasingly immobile. Realised after joining this forum the prevalence of gluten issues. Paid for private Endoscopy which finally confirmed gluten intolerance.

Multiple vitamin deficiencies took a year to recover with significant supplements. T3 started successfully, with almost over night transformation in summer 2017. (Initially only 2x 5mcg T3. Slowly increased to 20mcg T3 (in 3 split doses) and 112mcg Levothyroxine) Now Fully recovered. More details on my profile

Tested positive for Heterozygous DIO2 gene variation. Helped in persuading NHS to prescribe T3.

[RockyPath]

Almost all of the illnesses and symptoms you're describing are attributable to hypothyroidism. Being prescribed LT4 when one has a DIO1 or DIO2 polymorphism that curtails conversion results in more intense hypothyroidism symptoms, including greater impairment of nutritional absorption.

In the chicken-or-egg debate, I believe that the Hashimoto's causes the hypo metabolism that drags down the gut performance. Dr. John C. Lowe documented this quite convincingly in his book, The Metabolic Treatment of Fibromyalgia, explaining all of the research into cellular metabolism. He describes how the beta-adrenergic receptors are the places on your cells that are hungering for T3, and, when they are not getting enough, the effects are brain fog, extreme fatigue, tingling in the extremities, pain in the joints and muscles, insomnia, weakened immune system, anaemia, tendon entrapment, memory problems, urinary urgency, poor lipid metabolism (high cholesterol), irregular heartbeat, dry skin, hair loss, digestive problems.

[Hidden]

I’m on the smallest amount of NDT and feel so much worse with all the symptoms you list. I did a post yesterday asking for advice but no reply’s as yet. I’m asking myself why I’m taking something that’s making me feel so ill. A little voice in my head is saying It’s the t4 I can’t convert in the NDT.

[Eddie83 in reply to Hidden]

Very possible. That's why I had to use T3-only therapy when I was very ill.

[Hidden in reply to Eddie83]

Please can you tell me how quickly you saw an improvement when you switch to t3? Thank you

[Eddie83 in reply to Hidden]

The half-life of T4 is about one week. So the transition period can be 2-4 weeks, you have to let the T4 decay. In the meantime you can ramp T3 up slowly, but determining the final dose is guesswork. I weigh about 78kg and ended up on a daily dose of five 12.5mcg doses of T3 taken over the course of my waking hours. That daily dose works out to about 0.8mcg/kg body weight in my case. However there are a few people (the late John C. Lowe was one) who claimed they could take their entire T3 dose just once per day; but why that works does not seem logical to me.

[Hidden in reply to Eddie83]

So if I’ve a month of t4 in my system will it take about a month to go? I want to try t3 I’m 9 stone what strength shall I buy please can you tell me as I’m worse tonight and worried I’m going to get worse. My mouth is terrible dry and my chest feels tight with heart palpitations. My son rang earlier and begged me to keep on the NDT he wants me to get well but doesn’t know just how sick I feel.. thank you for taking the time to reply.

[Eddie83 in reply to Hidden]

9 stones is ~57kg. So if your body is similar to mine, you might need a daily dose of T3 on the order of 45mcg. I did find one reference that stated studies done in humans showed that the correct daily dose of T3-only was usually between 40mcg and 150mcg daily. I used five doses of 12.5mcg daily. However, Lowe stated that he took 150mcg every day as one dose. If you have access to T3 as 20mcg tablets, I guess I would recommend that you gradually ramp up to a daily dose of four 10mcg half-tabs. Of course, while T4 is decaying away, you should ramp up very carefully and back off if you feel hyperthyroid symptoms. If you can get up to 40mcg and feel reasonably well, then you could increase from there in 1/4 tab (5mcg) increments to see if a higher dose is beneficial.

[Eddie83 in reply to Eddie83]

BTW, it's my understanding that the half life of T3 is on the order of 1/2 day. So when you do a T3 dose increase, you should wait at least 3 days before trying another dose increase.

[Eddie83 in reply to Hidden]

BTW have you ever heard of Valerie Taylor? She used to run the old RT3_T3 list and now runs the thyroidrt3.com website. She is a good example of a thyroid patient who has never been able to tolerate T4, and has developed elaborate protocols for people who can only tolerate T3, and have contributing problems like adrenal function that need to be fixed before they can even tolerate T3.

[Hidden]

Yes after my TT I was put on my first lot of Levo. I was on it for 8 months putting on weight for the first time, feeling ill and losing my mobility.

I have no others health issues either. I am now well on NDT self medicating and no doctors.

[Taloula18]

I found that some of my symptoms decreased while on t4 (hairloss, lethargy, feeling cold) but I got a whole new set of symptoms: acne, indigestion, scaly skin and plantar fasciitis like symptoms which left me hobbling and limping to the extend I became virtually sofa bound. In desperation having tried several different brands of t4 and posting my results here which indicated that I wasn't converting, I trialled self medicating t3. It took 3 months but now I can run and jump and am pain free (in my feet at least!)

Recently I scaled down the t3 to trial t4 again and could monitor the side effects returning: foot pain, acne, dry skin, feeling hopeless, allergies, cold, tired, bloated. Particularly interesting for me is that my life long allergy to cats (rhinitis and eczema) disappears when I take t3!

I'm bracing myself to do battle with the endo in June when I try to convince them to prescribe t3!

[Eddie83 in reply to Taloula18]

That bit about allergy to cats is fascinating. So you are in the UK where endo-battling is a national sport?