Hi, I’m 49 and have had APS for five years, treated with baby aspirin and plaquenil prescribed by a rheumatologist, no nearby APS specialist. I’m currently struggling with quite severe memory and brain fog issues, which could be down to APS, Thyroid or peri-menopause. GP won’t do anymore testing than the basic TSH which came back at 1.8. I’m now considering doing a full thyroid test panel privately as I don’t want to be like this and need answers. Unlikely GP will offer to take blood for private tests and no private hospitals locally to approach for the service. Some thyroid tests say they are finger prick. Does anyone have any experience of thyroid finger prick tests - is it really that simple? Is it just a spot of blood required or do you need to fill a vial from a finger prick?
Thank you in advance
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Hi, yes I have done this a couple of times, a bit of a faff, you certainly have to squeeze a bit to get some blood, enough into the container, but the idea is worse that the actual doing of it, although my first attempt, looked like some sort of crime scene investigation! I prefer a blood drawer, but do these when I can't find the time to get to the hospital that does it. MaryF
Thank you Mary. As you say the idea/thought of it is probably worse than actually doing it! At least I now know it can be done, thank you. I appreciate that testing kits may vary from different labs but in your experience if you have a full thyroid panel done is it a separate vial for each test or just the one vial needed? Thank you 🙂
The tests you look at will indicate what to do.... they are all fairly similar, I am sure I only had to fill one, last time. Which company are you going for? MaryF
Thank you. I looked at the Thyroid UK website about testing and initially was drawn to Blue Horizon Medical as the advert said phlebotomy could be included. Unfortunately on closer reading there are no hospitals near to me in order to use this service, hence my question about finger prick testing instead. Nothing is ever straight forward! X
Hi Mary, I have just looked at the Medichecks website instead and see a step by step guide to finger prick testing. I shall have to be brave! Thank you.
Hi APSnotFab, thank you for sharing your experience. The fact that you found the whole process fairly easy and would repeat this way of doing a test is very reassuring to a novice like me! I don’t fancy doing it but I really cannot just carry plodding on with the way things are so I need to do something which may give me the information I need to help me move forwards. Thank you for the tips about when to post the sample, I hadn’t thought of that. Thank you 🙂
Hi - I sympathise with you as have similar problems myself however i seem to have a different view than most - I have had thyroid disease for almost 50 years and don't believe you should mess with private blood tests - if your GP thought it was thyroid he/she would test further based on your symptoms which are not just typical of thyroid without other accompanying ones which would be more prolific and troublesome - not the answer you hoped for probably but the truth - your rheumy could be helpful in testing further re autoimmune causes causing those symptoms - ps please watch the plaquenil dosage and eye checks -extremely important - I have plaque nil induced retinopathy which although very rare is a tough problem - wish you all the best --- and remember too much stress will make those symptoms worse!
Hi Murphy0866, thank you for your reply. I sympathise with you for battling thyroid disease for 50 years, my grandmother was diagnosed as hypothyroid when she was 20 and battled its many symptoms until her early 90’s. I had hoped my Rheumy might be more helpful when I raised the possibility of my also being hypothyroid as my fatigue levels are a constant battle but her response was that it was probably all down to low iron levels and if I was still concerned I could go back to my GP to request a thyroid test. Alas the GP will only offer TSH testing as the NHS standard. I get the impression the NHS is currently so strapped for cash that they don’t want me on their budget! My iron levels are back to normal but I am extremely sluggish is all areas and battling weight gain. I’m finding it hard to be motivated for things that used to excite me although I try not to complain too much as I am carer to my disabled adult child who has a life much more debilitating than mine. I am sorry to hear about your plaquenil induced retinopathy, I have met one other person with the same (in a Dr’s waiting room) and although i am told it is rare, it clearly is an issue which I feel is quickly glossed over with ‘it’s a small dose’ by some drs. It is of concern to know two people have suffered in this way due to plaquenil and I will give this and the thyroid testing some further thought. Thank you for replying and I send you my very best wishes and a hug 🙂
Hi Fra22-57, thank you for your reply. I am pleased to hear the test was easy to do but am naturally disappointed for you that your Dr didn’t accept the results, how incredibly frustrating! Alas I suspect my GP practice would react in the same way 😀
Thank you. It’s very difficult because deep down we know something is wrong which is affecting our quality of life. No one knows our own body as well as ourselves and it’s very frustrating not to get the support needed. I wish you luck too!
Hi WendyWoo50, thank you. I’m nearing the big 50 in a few weeks time and many people say i feel like this just coz I’m getting older. I don’t think it is as my mum is 74 and has way more energy than me! 😀
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