I had to go to the rapid access chest clinic and they want to do a contrast CT scan of my heart, to be on the safe side. I'm really worried about this and I was wondering what people's experience was. The reasons I am concerned is that:
- they want to but me on a medication that slows the heart, but my heart rate often drops quite low (below 60) when I'm resting. I've asked them for alternatives or a lower dose but they've refused (and now the scan is next week and I still haven't been able to pick up the medication anyway).
- they plan to use a contrast dye and I react to loads of things.
It's been booked because I have long Covid (I mean my body is falling apart - yesterday I bent over and my left lower rib did something - think it might be a popped rib, which was really painful, and I'm still in pain) on top of lupus and APS.
I got the appointment through, and I just started to get tearful because I'm so tired and don't want another thing done to me.
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Treetop33
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I had issues after Gadolinium MRI, I was worried about loin pain I was getting even though eGFR couple of months earlier was fine. Twice before it I cancelled saying I felt unwell.
Meanwhile I could not get advice from the referring doctor, who said that they were surprised I asked about the contrast (and practically blew my head off she was so cross), or later from the Radiographers on the day (who referring doctor said would help - they were in a hurry and just use latest eGFR which is their only check). I went ahead thinking nobody has an issue.
I then had a bad reaction so I guess I'm not the best person to discuss these things . It went on for months, I think the vein in my hand collapsed as it was miscoloured afterwards. It was Christmas and then massive queues in A&E. I got most of my help from 111 doctors. It is worth getting details of who to contact if you need to. My GP wanted to record all the symptoms I got, and later referred me to a physio because tendons tightened in my hand and wrist. My hospital record says now that I must not have any imaging contrast.
CT with Iodine was fine for me but next day I got fast runs in heart rate. I think this contrast affected thyroid slightly. Again I saw my GP.
Both times I had plenty of fluid after to try to clear my system. Think that can help.
Praying you make the right decision, and in the right time.
Go back to the referring doctor and see what they say.
My GP was surprised I had a second CT ordered just five months after surgery ordered one (70 chest x-rays each). So getting GP view might also help. Wish I had let him know specialist did two week wait second CT.
It is more than doctors ticking standard pathway boxes and increaing stats for their area, your health should be their priority. Hopefully it is but learnt we sometimes have to check.
Under "Why is my heart rate still erratic at times long after my initial COVID-19 illness?"
Says:
Why is my heart rate still erratic at times long after my initial COVID-19 illness?
"Rapid and irregular heart rates have been widely reported in long COVID. Patients who were hospitalized have significant rates of cardiac injury, and it is recommended that a full evaluation be conducted by their primary care provider or a cardiologist. Individuals who recovered at home very rarely experience long-term cardiac injury (less than 1%); however, they should be evaluated as well but will likely need less testing than those patients who were hospitalized. The exact cause of heart rate problems in long COVID is not known. Exercise testing in individuals with long COVID who were healthy prior to their COVID-19 infection and were not hospitalized has not shown any heart or lung problems. Instead, these exercise tests have shown that there is a problem with the ability of the body’s muscles and tissues to use oxygen. Some researchers have hypothesized that this is due to a problem of either metabolism of the body and/or the body’s microcirculation and the nerves that control it. Either way, on these exercise tests it appears that a high heart rate and hyperventilation are more of a compensatory mechanism for the problem of the ability of the body’s cells to use the oxygen, rather than a problem with the heart and lungs themselves. Some patients also have neurological symptoms of their autonomic nervous system. These autonomic small nerves control heart rate, blood pressure, and other involuntary functions in the body. When these nerves are not functioning properly, it is referred to as “dysautonomia,” which has been reported in patients after experiencing COVID-19 and other viral illnesses. Postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia causing erratic heart rate are forms of dysautonomia. Treatment is available for these conditions."
I hadn't thought about doing that, largely because I've already internalised their sense that they are too busy. I'm not quite sure they would respond in time. I could try though.
At worst, you can discuss it with them at the actual procedure. Have you a contact number for the unit that does it? The specialist nurses there are usually really helpful as they have to deal with the upset patients.
I've been talking to them but they are insisting. I'm not just being an 'upset patient'. I am genuinely concerned about having a procedure that will make things worse.
I just feel quite upset really, not helped by the rib pain (I have a case of "I can't bear one more thing").
I completely get your perspective. There's always a cost/benefit analysis to be done. I think we get over tested because of the systemic illness. I do keep on asking my GPs to refer me to a LC clinic but they are dragging their heels.
I’ve had this ct scan quite a lot, the only thing I notice is my blood pressure must go a bit lower as I feel a bit dizzy afterwards. The staff are usually great, telling me not to rush to get up,get me a sick bowl at the ready. It only lasts a few minutes then I’m fine. I wish you all the best.
I had to take Gastrogafin (has iodine in it); the day before my colon CT scan. It made me really sick 🤢.
Gastrogafin allegedly clears the bowels as a prep. Hospital gave me a new appointment and Movicol to take for the next week. (This worked but was imo awful).
I was due to have contrast on top the next day with the CT scan. I explained what happened the week before and leading Radiologist discussed with me prior to going ahead. I actually stood firm and refused as I have Hypothyroidism and didn't want to take the risk.
Luckily one of the younger lady radiology ladies told me before the doc arrived that it wasn't necessary for the CT scan and some hospitals don't give it.
I don’t know the answer to your question as I have not had a CT scan particularly of my heart, although I have had plenty of CT scans with and without contrast. I just wanted to say that I totally understand the feeling of no more please. I do think most of us here do. Sometimes it just gets overwhelming and you feel depleted physically and emotionally. It is a good thing that you recognise it and feel able to tell us all how you feel.
Reading down this thread I see that you have delayed this can until May. Given how you feel, it is a positive step and will give you and your GP and radiographers time to discuss your concerns and sort out the best way to proceed for you.
You can relax now and enjoy this Easter weekend. Sending you a big cwtch and hoping you have a peaceful weekend xxx
Same from me as Cecily. have you tried writing down what you want to say and your concerns to whoever it is that you are seeing? You can take your notes with you and refer to it if you get tearful or get the GP or nurses to read it even. Sometimes I fall apart a bit with a consultant as I can sometimes feel so weary and a bit scared and I don't remember everything I need to say. Writing down what I want to say well before an appointment and then adding to it every now and then up to the day of the appointment helps me. We have so much to deal with and often doctors and nurses don't even realise we've been poked and prodded by different people on an ongoing basis for many different ailments. I sometimes just have a good cry and then carry on. It's ok to feel sorry for ourselves, we have a lot to deal with. Take good care of yourself xxxx 🥰
Treetop I would like to offer my experience with contrast dyes but not of my heart. Recently I had CT scans one of my shoulder and one of my hip. Also contrast of my brain
(Yay) and carotid artery. And I’ve had my thyroid done several times. I was nervous a bit for all of them but they reassured me that my IV was ready for any reaction. I never asked what it (drug in IV) was but it was all ok. I felt a bit tired and dizzy after brain etc. / had TIA last fall and it was an emergency. Also performed was a heart sonogram. I recall liquid in an IV I think but I was sitting up no contrast/ perhaps this could be done? Fuzzy memory of it all. I react usually to many many things. I did not.
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