Levothyroxine intolerance

[Mugs19]

I have felt dreadfully ill ever since I started taking Levothyroxine when I became hypothyroid in October 18 following RAI treatment in June 18. I was suffering side-effects from the carbimazole and was told that it was easier to treat an under-active thyroid than an overactive one. The deterioration has been remarkably fast and accelerating recently. I have trouble walking short distances, getting upstairs and am having to fight off depression that engulfs me at times. I would be wasting my time to explain to my doctors that I am suffering from Levothyroxine intolerance but I am now certain that's what it is. I have gone through this so many times now and if I keep ignoring it I am worried that I may have another adverse reaction to it similar to the one I had to blood pressure med's when I was in my 50s: Shooting pains in my joints, muscles , tendons, lack of balance and sensory integration. Doctors would not believe it was the med's. Got a private appointment with a Rheumatologist who said it was definitely the drugs and I was the third person he seen that afternoon with the same thing. It caused damage to my joints. I had injections at the time but the damage was done. I had six months off work and could not walk without pain for 12 months. Since then I have had to have bone fusion and screws in my foot, right hip replacement and reverse replacement of my left shoulder. I have had similar pain caused by clopidogrel, fragmin and heperin and will not touch statins as I think I am a bad risk with them. I think more damage is occurring now and want to stop taking the Levo and go T3 only.

Things which have helped to convince me it is the Levo. I've had three different brands now and after a respite after each change, pain returns, so not the excipients. My cortisol tests showed a marked rise in stress at the 12 0 'clock test. After I have taken my meds usually at 5.30 am I get wound up and generally worse with everything during the morning. After my second dose of T3 p.m. I start feeling better and improve pain wise , though in the evening, tiredness can be overwhelming. When I go for early morning blood tests I have noticed several times that I am walking round the hospital much better than I do after I have had my med's.

So last week I had an experiment. Monday I had my bloods taken but did not take the levo afterwards and tookT3 5mcg only x 2 that day. Late in the day pain in my back subsided. First time I have sat on a piano stool to play without discomfort. So for the next two days I took no Levo, and increased my dose of T3 to 3x 5mcg/day. Total change of feelings. Felt in control of my body instead of operating a remote clumsy robot. Sensory integration nearly normal. My feet actually felt like thy were my feet again. Energy to do some neglected cleaning and enjoying more pleasant activities instead of forcing myself through the motions.

I am aware of Lalatoot's story and the sensible warnings put out on here about stopping Levo, so I started it again on Thursday and within 24 hours the same pain and malaise had returned. I have kept up the third dose of liothyronine 5 mcg and there is a little improvement carried over but I don't think it would be a big enough dose on its own without the Levo. I am scared what damage is occurring now because clearly some has been done again, to my joints and muscles.

How can I transfer to T3 only and find the right dose? I have been increasing it very gradually as per advice from this site, because of my sensitivity. Then there is the problem of sourcing it, as I haven't seen my endo since February and the man now in charge is useless.

I am depending on you good and worthy people for some help here.

[shaws Administrator]

You are another poor thing who cannot improve on levothyroxine. I, too, was more unwell on it than before I was diagnosed (by myself).

The problem is that few doctors have sufficient knowledge these days to diagnose/treat patients - they are unaware of any clinical symptoms and it these that should be resolved if we take thyroid hormones that suit our bodies. Just like someone has a reaction to certain foods.

Before blood tests were introduced along with leothyroxine we were prescribed NDTs (natural dessicated thyroid hormones made from pigs' thyroid glands) and people didn't die a horrible death from then on.

This will be informative/helpful and we seem to have no doctors of this ilk in the UK anymore. I think they're afraid (and no one would blame them) of losing their livelihods so have to toe the line.

hormonerestoration.com/

[Mugs19 in reply to shaws]

Thankyou for this. I have now read it. I also read all Dr Lindner's submissions to the Scottish Parliament. I have a few saved on my Favourites. It was his advice that helped me to see what the problem is. Unfortunately this doesn't give me the information I need to switch from Levothyroxine with a little Liothyronine to T3 only without suffering too much. I am thinking if 25mcg T3 =100mcg t4 that I need to keep raising my T3 dose and at appropriate stages reduce the T4 til it is possible to discontinue T4 and adjust dose of T3. Somehow I thinks it is going to be more difficult that it sounds . I was on 75mcg Levo and now on 50 mcg Levo and 15mcg Lio.

[penny in reply to Mugs19]

Following the advice of Dr Peatfield I gradually reduced my T4 (which was making me very ill and thyrotoxic) while increasing my T3 until I felt well; this was when I was on T3 only. It is a very gradual thing and it was helpful keeping a diary of the dose, temperature, bp, pulse and comments on how well one felt.

[Mugs19 in reply to penny]

Thankyou very much for your message. It is very encouraging to hear from someone who has done it successfully. I am finding it a bit scary. Do you manage to get liothyronine on NHS prescription. How much T3 do you need compared to the amount of Levo you were on? Have you been stable on the same dose since you reached mono therapy T3? Sorry to pester you but I am scared of getting it all wrong. Many thanks again for bothering to message me