Propylthiouracil - I'm allergic to Carbimazole

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Hi, I was diagnosed with Thyrotoxicosis a year ago. I have a large goitre with nodules, and my weight plummeted - shakes, sweats, heart racing, severe depression, no appetite, the usual symptoms. I was given Carbimazole 40mg to start with, and stopped it after two weeks as I felt so unwell on top of how I was already feeling. I was ok for a few months, then I had a thyroxide storm in Dec (which I didn't know at the time and thought I had a severe virus for a month) and after months of my GP trying to give me anti depressants and anti vomit drugs, I was referred again to my endo. I was off the scale again, so he re-started the Carbimazole in May. It's taken a while to cotton on (my brain is like wool) but I suddenly realised the horrendous 'hay fever' symptoms I had (I've never suffered with it) and eyes swelling etc were the Carbimazole. Saw my Endo today who has taken me off it, and given me Propylthiouracil. I've resisted all pressure to have my thyroid removed and the iodine treatement. I believe that once it's done, there's no going back and my cousin has had nothing but trouble since hers was killed and she is now underactive all the time. I'm wondering if anyone else on the forum is taking this other drug please? I was happy on the Carbimazole as I gained a stone in weight, and my mental health has returned to normal and I can eat again. However the allergic reaction has been hell to live with and I can't see most days due to my eyes swelling, fluid under them, throat swelling, mouth stinging etc. I feel very isolated as I know nobody who has an overactive thyroid, other people seem to have the underactive. Any help I could receive would be gratefully met! Oh, I should also add that I'm on fentanyl patches and codeine for a long term spinal injury and scoliosis, I don't know if that makes any difference? Thank you for reading.

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  • Posted

    Wow.  I am sorry you have had such a difficult time.  With this disease, it is most important that you become an empowered patient.  So to begin with, every time you see your doctor and get blood work done, ask for a copy of it.  It will list your values and beside your values the normal range for that test.  It helps when you post to this board if you could also post your results with your questions.  Hyperthyroid patients lose Carnitine from their muscles and are therefore carnitine deficient as well as vitamin D deficient.  Carnitine is an amino acid that is normally found in the body.  There was a medical research paper published by Dr. Salvatore Benvenga from Italy who described the amazing results he got when patients were given L-Carnitine replacement along with their medication. You can Google his name to find the paper.  His study used regular L-Carnitine but I have had the most success with Acetyl-L-Carnitine or using both.  Thyroid results are most sensitive to the Acetyl-L-Carnitine and the Carnitine dose and your medications has to be adjusted as your results improve.  I would start on 1,000 mg of Acetyl-L-Carnitine and 1,000 mg of regular L-carnitine and 1,000 units of vitamin D.  You get this in a health food store.  Your doctor will not know about this or endorse it so  you need to do your research and decide for yourself whether you want to try it.  I think you should not take your medication and Carnitines at the same time as you take the Codeine (if it is a pill).  Initially I took the Carnitine along with my medication and it helped the medication to work better but once my TSH started to rise, I found I needed to take my Carnitines in the morning and my thyroid medication in the evening.  This has been amazingly helpful in my recovery.  I also had my ophthalmologist put collagen plugs in my tear ducts for the eye dryness and irritation and I get these changed every 6 months.
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    • Posted

      Thanks for your quick reply! I've been taking L Carnitine for around three months now - I didn't tell my Endo as I don't want the finger wagging to start. I'm taking 2000mg on a morning and 1000 on an afternoon. I've felt so much better since taking that and the Carbimazole, my last results were (not sure which way round is which as I just saw it on my GP's notes) 6.8 and 2.3. My previous results were 29 and 19 (again, don't know which is which) I'm trying to remember my results, but I had a brain aneurysm two years ago and my cognitive function is reduced. The fact I barely had a days illness until I ended up in neuro with this makes me suspect that my head going pop has caused a whole lot more than what was first seen! I'd never even taken as much as an asprin before all this horribleness - maybe my body has reacted badly to drugs and pain meds in the last two years. I'm keen to stay on the L Carnitine, as I do feel it's helped. I can lift my arms up now, and have some sort of muscles appearing again after months of being floppy. Thank you for your reply :-)
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  • Posted

    Regular L-Carnitine is good but Acetyl-L-Carnitine is better for improving your results more quickly. The Acetyl crosses the blood-brain barrier. It is mostly used for neurological conditions and things like dementia and Alzheimers but it works very well with hyperthyroidism as well. So you can add the Acetyl-L-Carnitine to what you are already taking.
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    • Posted

      Oh I didn't know that, I shall buy some to add to it. I didn't realise it helps with neuro too; I'm still repairing damage caused by the brain aneurysm so it would assist in all sorts of ways. I've taken my first Propylthiouracil this morning, so fingers crossed I'm not allergic to this too! Thank you for your advice, it's appreciated. Best wishes, Sally
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    • Posted

      If you are on regular L-carnitine, I wold not add more than 500 mg of the Acetyl-L-Carnitine and I would decrease the regular L-Carnitine by that amount in order to add the Acetyl.
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