Did you know that there is an official government site in the UK for reporting the side effects of drugs? Most people don't and I feel that others may be suffering because of under reporting.
For instance, having had my thyroid become under-active after taking the drug Amiodarone means I will now have to take another drug to correct this for life. If all side effects were reported in full, then perhaps the ones that do most damage/cause most suffering, would be withdrawn from use and save other people from feeling ill. Has a drug made you feel sick, extremely tired or poorly in any way?
The reporting system is called Yellow Card and if you search for that online it's easy to find. Below is a link that will take you directly to it:
I agree...I was prescribed the anti coagulant Xarelto, and after 4 months my iron and haemaglobin levels were so low that I had to have blood and iron transfusions., then daily liquid iron whilst injecting myself with heparin for a few weeks - not fun. After routine bloods were taken at my health centre, the hospital called me a few hours later and told me to get there PDQ!
The fatigue I was experiencing was off the scale, could barely walk a few yards. I had to have a colonoscopy, endoscopy and CT scan to eliminate any other possible cause. It was established that Xarelto was causing internal bleeding!
Do you know where from? I suspected Rivaroxaban was causing internal bleeding but my blood test was ok, however I feel better on Apixaban and have less small bleeds,
That sounds scary Jeanette! I hope you have, or will report it. So many people don't report effects and others may well have the same experience and not report it either and so we go on not knowing in general what these drugs can do.
Yes, I will report it Jean. It was very scary! I now take Eliquis, and do get quite tired, but I had a Cryoablation 5 months ago, so it could still be the after effects of that...who knows? I am having bloods done next Wednesday so will know more then. X
Please let us know how you get on Jeanette, especially with your blood tests. Have you had your thyroid tested? I found that my under-active one was making me feel really tired and I often had to sleep in the afternoon.
My GP was keeping an eye on but ignoring my under-active thyroid and it wasn't until I had a test at hospital that they told my surgery I needed to be on medication.
Best wishes and hope you soon get your energy back.
Please not think that being under active is fine because it runs in your family. If your thyroid is definitely under active you need medication to stop the long term negative affects on all your organs, most definitely the heart and brain, which require proper levels of hormone to remain healthy.
I did not mean to offend you but you yourself said that your doctor was ignoring your under active thyroid until the hospital stepped in. GPS generally have very little idea about anything to do with thyroid. They rely on the lab to interpret blood tests and these take little account of the individual needs of each patient. The Thyroid UK site of Health Unlocked is besieged with people whose Doctors and the “TSH only” blood test are letting them suffer through ignorance of good thyroid care. All I am saying is be as vigilant of your thyroid as you are of AF matters, because low thyroid is a trigger for poor heart health. Just trying to help....
Ah! apologies and so I hope she is reading this thread. You say yours is slightly off, whatever that means. Sorry but I am evangelical about thyroid matters, because I read so many horror stories on Thyroid UK and GPs just rely on an out of date system of TSH blood tests. I do not have one myself and would probably be dead by now if I had not taken control of things.
Me too Hennerton. I believe docs put people on too many drugs that they dont need and they dont check their thyroid first. No thyroid should be slightly off as it can affect every cell and organ in the body. I know someone who has been put on lithium and his TSH is over range but they are not treating his thyroid with medication as they should because they wont treat till over 10, by which time the thyroid is no more! His toxic result was high so they put the lithium up instead of treating the thyroid. He has now been told by mental health team to come off all the drugs very slowly. He cant be left on his own, cant work and has two kids. Often in tears and severely depressed and its no wonder?! Point is if they had treated his thyroid he wouldnt necessarily have needed those toxic drugs or the mental health team at all. It makes me so mad. Im not a doctor but have done loads of research over the years. Took me 7 years to get my son diagnosed with Hashimotos. I knew he had the same as me but the local clinical lead tried to blame it on him being special needs and not having a job. I have this in writing! I didnt want him to have it as its a horrible condition to have to live with and having to be on thyroid meds for life!
In my job as a medical secretary I often see patients who are left on very low doses of thyroid for years i.e., 25 or 50mcg which is just a starting dose really and wont do anything much. They then have co-morbidities which probably would not have occurred if their thyroid had been treated properly in the first place and went by symptoms like they used to in the old days!
I really feel docs and some endos treat the thyroid so lightly and send you a way with a pill or dont treat at all. Its so short-sighted and the NHS would save so many unnecessary appointments and visits to doctor surgeries if they just treated us properly.
I absolutely agree with everything you say and anyone going to the Thyroid UK site will see in what a dire state is the care given by GPs and even endocrinologists to patients with thyroid problems. I would say it is the most poorly dealt with of all branches of medicine. Doctors apparently have half a day on it in medical school. Yet 100 years ago, patients were given natural desiccated pig thyroid and were absolutely fine. All our woes are at the door of Big Pharma, I am afraid to say and now we are not being allowed a basic hormone, Liothyronine, as Big Pharma are massively overcharging and the NHS cannot afford it.
Sorry to rant but I do believe the care given to AF patients is excellent. Be happy!
Hi sorry to intervene in another persons query but I notice you refer to proper thyroid function being essential to heart health. I have just been diagnosed with Hashimotos disease following removal of half my
Thyroid because of a module that turned out not to be malignant . Because my TSh and T4 scores are just within normal range my GP is refusing to treat me yet even though I feel constantly tired and have had other symptoms of hypothyroidism. But I am worried now this might affect my heart because I have two heart valve defects and also used to have persistent AF until An ablation two years ago. Should I insist that the GP tells my cardiologist - I am
Monitored by scan once a year last in November but before the thyroid module was found and half my thyroid removed
Yes you should get your GP to write to your Cardiologist and explain everything that has happened to you regard to your thyroid. Dont know why they would operate on a nodule that wasnt malignant and remove half of your thyroid unless there was some malignancy in that. Id be tempted to ask for copies of all scans relating to the thyroid and any other useful info and get doc to send it on to your cardiologist. Did you not have a conversation about this with your cardiologist?
Here is some useful info that your doc/cardiologist might like to read. It does sound as though you have several other health issues though which might make you feel tired also. I am not a medic just someone who has done loads of research over the years, so please dont take this as read. Its just a few bits of info that I feel might help tou.
The answer for many appears to be from low levels of T3 (Triiodothyronine), the active thyroid hormone. Your heart's health and your entire cardiovascular system is highly dependent on adequate levels of T3 for its well-being. T3 improves contraction and thus cardiac output, for one.
A healthy heart happens with T3 in the mix, report both patients and ...
The cardiologist and GP should have a complete picture of your health and copy each other into any correspondence as well as sending you copies of everything. You could ask for a referral to endocrinologist but you need one who is very knowledgeable on thyroid matters and they are far and few between. I do know of one in Somerset but that might be too far away.
This man has a wealth of knowledge on thyroid nodules
Good luck. I hope you manage to get some reassurance. As I say I am not medical but have just learned alot due to my son and myself having Hashimotos Thyroiditis. It took me seven years to
get him diagnosed and for them to believe that he had the same as me!
I hope you manage to get these two to talk to each other regarding your health and that things start to improve for you soon.
Thanks v helpful - yes it does concern me that different specialists don’t seem to talk to each other
My GP is v reluctant to refer me to an endocrinologist so I guess I will
Have to pay. Anyone have an y
Recommendations of
Good thyroid specialists in central London
Btw I had the module removed because after a core
Biopsy it was classified tHYF3 which has a 50% chance of being malignant and I gather removal for diagnosis is the recommended route. It seemed wiser to find out
But it was the histology that diagnosed the Hashimotos. By
Tsh and t4 preop results were supposedly
Normal though low in range. But I had all the classic signs of underactive thyroid as well As A Cough and. A hoarse Voice hence the referral for cancer screening
You can help yourself enormously by going across to Thyroid UK on Health Unlocked and giving them more details. You need to ask GP for copies of all your blood tests and post these with your questions. They are very knowledgeable and helpful but must have something to work from. Sounds to me as though you definitely need an increase in Levothyroxine and possibly some T3 but trying to get anyone to prescribe that will be difficult. There is so much to learn and understand and you must be your own doctor, as the medical profession is hopeless where thyroid matters are concerned. Good luck!
Do you have any isea what happens after we report to the Yellow card Scheme. My hubby had a very bad reaction to clarithyromicin which i duly reported, but never heard back from them. This is worrying as I have read that others have had bad reactions to this drug yet it is still being dished out by docs on a regular basis. I appreciate that not everybody gets these side effects, but do the MHRA ever take a reported drug off the market I wonder?! A friend of mine has just reported serious side effects with Pregabalin at only 75mcg which my hubby has just been advised to take!
That's interesting thank you. I worry many drugs cause us untold side effects that we experience but aren't apparently registered anywhere for us to compare notes. Will look at the yellow card system.
There are two options on the Yellow Card site, one for clinicians and one for patients. You don't get feedback. I've submitted two reports including one for dronedarone. It was heartening that the clinical team that worked on me for pulmonary toxicity secondary to dronedarone and amiodarone, published a paper on my case (referring to it as organising pneumonia) that became case of the quarter in 2015 for the Edinburgh Royal college of Physicians. I think the second referred to Apixaban, but a subsequent CT scan showed a probable haemorrhagic transformation (bleed in the brain not diagnosed by a GP) subsequent to a stroke a month earlier.
Hypothyroidism is not a side effect of Amiodarone! It is an intended effect as this drug is used to treat overactive thyroid. Afib can be one of the consequences of hyperthyroidism .
My thyroid was fine until I took it, its well known that Amiodarone can damage the thyroid function. My GP knew that the damage had been caused by the drug and was hoping that once Istopped taking it my thyroid level would return to normal, but it didn't. Yes, I know that AFib can be one of the side effects of hyperthyroidism. Having to take medication for life now, I can assure you I've studied the thyroid well. At our breakfast meeting last year 3 out of 20 of us attending had thyroid damage caused by taking Amiodarone.
I agree with you I was on amiodarone and had to stop taking it because of my thyroid, they found I had a nodule now I am also on medication of rest of my life.
I agree with you, as I think a lot of people aren't aware of the site. Together we could ensure that all the drugs that give most side effects are removed from supply.
I too was allergic to Amiodrone, prescribed for AF - excessively low blood pressure which damaged the stitches of my brand new mitral valve. All drugs have side effects which are different for all of us, in other words all drugs work differently on different people. The effects ae likely to be as intended for the majority (but not all) of people, or classified as "side-effects". Its still worth reporting though.
Thank you Jean , I never knew about this site, Amiodarone sent my thyroid rocketing, extremely sensitive to the sun, heart felt like it was being squeezed, nightmares, no sleep and ramipril gave me a persistent cough after a year of taking it, I will fill in the online forms for them both.
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