I had a call from my GP surgery last week telling me because of my Graves I was considered high risk and would get a letter soon about sheilding. In the meantime was I able to get food and meds ok. My letter arrived today with advice, contact numbers and telling me I was entitled to a free weekly food box. Although grateful I am left feeling confused. BTF advises we are not at any more risk. Some scientists even suggest that we may be better placed to fight the virus as our immune system is already "primed" I feel well and will continue going out for my meds and weekly shop. My husband has more serious health issues as have some friends. None have received this sheilding advice. I find it ironic that we usually have trouble getting our ATD recognised. It seems we have gone from one extreme to the other.
Coronovirus shielding with Graves: I had a call... - Thyroid UK
Coronovirus shielding with Graves
I am surprised you received the letter as it does not list Thyroid issues nor any of they thyroid medication is listed as being high risk.
Yes I was very surprised and wondered if anyone else had been contacted
Thyroid issues should be high risk as they create havoc with the immune system. Seems to me that whoever created the list may also have written the recommendation for the blacklisting of NDT.
Does having a 'primed'immune system mean there s a greater risk of cytokine storm, which is one of the problems with covid19?
100% agree. We are immune compromised. My private consultant emailed me and suggested isolating for 3 months. I am not going shopping and am adopting shielding measures. I live in a village so have access to wide open countryside meters away from home so i can dog walk and run. Apart from that Im staying in.
BTW I wouldnt take any notice of the BTF or anything they say....!
I have Graves' disease written on my medical notes but I have heard nothing from my GP or surgery which doesn't surprise me at all. When I had a thyroid storm last year they didn't take it seriously either. I am still having to go out and shop for my family and my Dad who is self isolating. The only thing I can do is follow the government guidelines and try to keep safe .
I'm formally diagnosed with Graves and haven't had a letter. I was advised to come off Carbizamole 6 days ago to see if my levels returned to normal. I think this is a daft idea in the present climate but I'm trying it anyway.
Before I even heard the term cytokine storm someone asked me if I'd be on the vulnerable list and I said no. The problem I'd have is my immune system would probably cope really well with the virus but then over react and take me out that way.
From your name Asiatic, are you Asian heritage? Could your GP be extra thorough looking for potential vitamin D issues?
I am Scottish and my GP practice by their own admission know very little about Graves and always defer to my endo. My sheilding letter came from the Scottish Goverment but I suspect it has been a case of the GP aware of their lack of knowledge being ultra cautious which I respect. I just wish they would start learning about ATD. If people on this forum with no medical background manage to educate themselves surely GP can.
Are you still able to get regular blood tests Gemmazzz?
When I was speaking to the endo they said I'd be monitored for at least 12 months. I have other pituitary issues so I see the endo regularly anyway. I'll have another blood test in a few weeks I think. I've got a mountain of blood test forms I've collected over the years because I've been sent so many so I could get them done whenever I like (if they haven't expired)
I'm shakey and hot but have a lot of stressy issues going on so not sure if its the thyroid or just the stress. I'm staying aware and if they get worse I'll start the tablets again.
Yes, but it does depend on availability of phlebotomists, nurses etc..also, preferable to get bloods drawn at the local surgery rather than in a busy hospital.
I’m perhaps a bit surprised they are taking you off carbimazole right now (unless you are already on a low dose and below/close to the bottom of the range). The advice seems to favour maintaining stability.
BY the way, my own recent blood test was delayed because I had a cough. I’d had it for three weeks at the time, and I’m pretty sure it was hay fever as the tree pollen had just started, and I’ve had a cough from this before. Luckily the pollen count is down, so I will see if I can arrange it for the next day or so... but goes to show, it may not be as easy to get tested as usual
I get my blood tests done at the local health centre a week before my appointment's due. Its really easy because you can just walk in and wait. Last time was a couple of weeks ago and there wasn't another soul due to the pandemic. I was so relieved because I'd been dreading it.
The reason I have so many forms is they give me one at the endo appointment and then send me one in the post as well. I have an appt every 3 months alternating between endo nurses and the consultant.
I've questioned coming off the carbizamole as well. They said my previous blood tests showed my T4 levels had actually dropped from the usual levels but were still within normal limits. I'm waiting for the letter to see what the specific results were.
I believe the usual protocol is if diagnosed hyper, you use medication for 18 months and then stop meds to see if your levels normalise. If they don't, they'll ask you to consider radiation treatment or surgery. They say long term medication can cause other complications to heart and bones. I was only on 5mg of carb per day and I can't find any evidence so far of such a low dose being an issue so I'll aim to stay on them.
I do hope you get your blood tests done soon. I also cough with hayfever. Today's been the first cloudy day in ages and I feel the difference. Best of luck to you.
I recently received a letter - last week- saying I was identified from the NHS database as someone who needed shielding - have various autoimmune diseases, heart issues etc etc
Then I received a text a few days later from my GP saying they reviewed my file and decided that even thou I was identified as needing shielding they didn’t think I filled the criteria and should ignore letter! As my GP is not the friendliest or in any way helpful or knowledgeable about my health I ignored the text. This is the fella after examining my ankle saying it looked fine to him and was happy to leave me hopping around in pain and only sent me for x ray after I refused his “ looks fine to me diagnose “ - turns out my ankle bone had big chunk of disintegrated bone from a bad ankle twist.
As someone who attends an average of at least 1 hospital a week, recently had a minor heart procedure, receive iv steroid infusion, on top of all my various fibro / arthritis/ thyroid issues etc etc I have been on constant alert since this pandemic started. Was following friends in Italy, HK , Spain etc so knew I should limit my contact with family: friends , public outings etc. Living on my own and not wanting to put family/ friends at risk. I just did my monthly big shop earlier than usual and was able to stay in for nearly 4 wks.
I have had to self isolate / quarantine myself for 6 wks x2 times in the last 18 months due to my RAI treatment so am very used to being prepared, taking all precautions when out and about.
As most of us here are already struggling with our health. Most of us are already doing what we can to keep ourselves safe and limit our contact with others/ outside world. Letter or no letter!
Keep safe everyone and look after yourself and if you can offer help and support in whatever way you can then ‘Tomorrow will be a better day ‘- Thank you to the Amazing Captain Tom
Hi, I got letter 4 weeks ago & call from GP just over 3 weeks ago checking on me. Me having Graves was not mentioned by GP, she spoke about consequences of me getting Covid 19 or even flu because of Trachea damage I have.
Letters have gone to folk who do not need them ,others who should have them have not. Registering on the site per the letter supposedly gets priority supermarket deliveries if you answer no to a question as to whether you can get essentials via relatives, friends etc. Trouble is you also get the free food parcel, a few tins ,some fruit and cereals .Contained in the box is a note saying if you do not want it in future either go back on the web site and answer yes , you can get essentials ,or tell the driver who will take it elsewhere.I suspect if you change your answer on the web site you will also be deleted from the supermarket priority list.
The second letter I got had a separate phone number they had opened up because of the amount of people phoning for supermarket home deliveries. The letter also had a list of basics in the box. I have not ordered the box but the list has loads more than you had in yours. It has tea, coffee, bread, milk, potatoes, pasta, 2 toilet rolls & lots more.
This is the BTA advice in case you (or your GP !) haven’t seen it. Their advice might be influenced by whether you are taking steroids for thyroid eye disease (in which case, probably in the shielded group) and how stable your condition is currently. Also, have you had a full blood count recently which included a low white cell count ?
The thing is, no-one here is going to be able to tell you for sure why your GP has made this decision, so the best thing would be to discuss it with them, and possibly your endo.
No steroids and stable. Don't want to take up medics time at the moment but I intend raising the matter at a later date as I think it might be an interesting and revealing discussion on how they view people with ATD
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