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nina_m

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nina_m

Hi,

I have been following many posts which I have found invaluable.
 

From what I have read AI is considered in the vulnerable group  but not extremely vulnerable group. However, a couple of days ago I received a letter about shielding (which I wasn’t expecting having read the info).

 

I don’t have any of the other listed conditions but do have primary AI, under active thyroid, probable crohns (mid investigations), restless leg syndrome and prediabetes (steroid induced) none of which are on the list. I have had 5/6 crisis in the last 12 ish months resulting in hospital admissions which I thought may be the reason for the letter or have the guidelines changed?

 

 Hoping to get some understanding as this letter states I have to stay in for 12 weeks. Any ideas?

 

Thank you 
 

Best wishes 

 

Nina x

 

 

 

 

 

 

 

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alison63

Hi Tina 

Rules have not changed but having 6 crises in 12 months is not a good thing so I suggest you try and talk your GP and Endo to help you.

Alison.

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susie e

Good advice, Alison.  To me, having that number of crises in that time indicates more than 'just' adrenal insufficiency to think about.

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suep1954

Postman has just been..... you can add me to the list of people who have had the NHS/GP letter. 

 

Sue

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annelben

Hi Sue

Is that good, bad or no change to what you've been doing anyway?

Anne 

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shannon_1958
42 minutes ago, suep1954 said:

Postman has just been..... you can add me to the list of people who have had the NHS/GP letter. 

 

Sue

Hi sue am I right you did your listing online? 

If so did you have to do anything else I did fill in form inline also but not sure if I had to do anything else ,pleased your now registered now for safety reasons x

Hugs x Shannon

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suep1954

Hi Shannon 

 

Yes, I self registered as being vulnerable on line via the Gov. UK website. I had a text acknowledgement from them that they were referring my case to GP/NHS. 

 

Last week I had a standard text from GP surgery asking why I thought I was vulnerable. I just said I had Addison's, my NK cells are impaired, I now catch a lot more infections, they hit me harder and take longer to get over, eg a cold now takes me 6-7weeks to get over instead of 2-3 weeks prior to Addison's. I added that if I was not considered vulnerable, that was fine, but I needed to ask the question. 

 

I expected to be told that I didn't fit the vulnerable category.  I haven't seen my GP for several years as my Addison's is generally stable and I've managed to self medicate through the difficult times. My only other condition is hypothyroidism. My GP is far from a soft touch so I feel she really  did listen. 

 

I'm retired (66). For me the main advantage is priority online shopping so that I can keep away from others. Also my husband turns 70 in a couple of weeks and has a bit of a heart condition so it keeps him away too. 

 

Sue

 

 

 

 

 

 

 

 

 

 

 

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suep1954
Posted (edited)

Hi Ann

 

It is more or less what I've been doing. The self registration prompted contact from Sains, who I normally shop with, offering priority online shopping. Prior to that I was trawling round the supermarket, which I confess, felt very vulnerable ....despite all the stringent distancing rules there always seems to be someone impatiently  pushing through the gaps. 

 

I will probably continue my daily walk but there's a really quiet route near me with loads of room for people to avoid each other. 

 

Sue

Edited by suep1954
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shannon_1958
1 hour ago, suep1954 said:

Hi Shannon 

 

Yes, I self registered as being vulnerable on line via the Gov. UK website. I had a text acknowledgement from them that they were referring my case to GP/NHS. 

 

Last week I had a standard text from GP surgery asking why I thought I was vulnerable. I just said I had Addison's, my NK cells are impaired, I now catch a lot more infections, they hit me harder and take longer to get over, eg a cold now takes me 6-7weeks to get over instead of 2-3 weeks prior to Addison's. I added that if I was not considered vulnerable, that was fine, but I needed to ask the question. 

 

I expected to be told that I didn't fit the vulnerable category.  I haven't seen my GP for several years as my Addison's is generally stable and I've managed to self medicate through the difficult times. My only other condition is hypothyroidism. My GP is far from a soft touch so I feel she really  did listen. 

 

I'm retired (66). For me the main advantage is priority online shopping so that I can keep away from others. Also my husband turns 70 in a couple of weeks and has a bit of a heart condition so it keeps him away too. 

 

Sue

 

 

 

 

 

 

 

 

 

 

 

Hi sue, 

Thankyou for your input, my GP is quite happy with my situation of self  management and listens to me, so I am hoping in this case she will be too.

Heres hoping as I have COPD I'm hoping I get some sort of recognition for same online shopping being a major worry for me too, in 62 and hubby 67 heart probs for him too.

Thanx Sue 

Hugs Shannon 

 

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nina_m

Hi,

 

Thank you for all the replies and sorry I haven't been able to log on earlier.

 

It seems a little bit dependent on where you live. I didn't do anything and a letter just arrived. The number of crisis was as a result of medical mismanagement and at the time of diagnosis........ needless to say I have changed hospitals and things are a lot better and I haven't been admitted to hospital since October (all be it on higher doses of medication and having gained a fair few pounds).

 

On a different note, I tried to register as priority to get food shopping as I am the only adult in the house and I was told by one supermarket that I am am not considered in a priority group despite having been sent a letter. I even sent a copy of the letter which clearly states my name, address and hospital number with instruction to shield for the next 12 weeks and only to go out for medical care. There seems to be some confusion somewhere as if I can't go out and I can't get shopping slots, then I predict a little bit of an issue.

 

Anyway, thanks again, I really appreciate it.

 

Nina 

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annelben

Nina

Your local council may be able to help.

Anne

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sharon13

Hi

i hadn’t received a letter so rang my doctor 5.5.20 and asked if I should have had one due to having Addison’s. They said they would check and get back to me. 
On the 7.5.20 I received the shielding letter in the post. It said I should shield for 12 weeks from today (7.5.20). I rang my doctors to confirm if it meant from that date or when I should have originally received the letter. They have advised me that my letter was the second round of letters (where was my first?) and I have to now shield from now. This will mean 20 weeks as I have already been shielding for 8 weeks :-(.

sharon

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sophie32

Hi Can it pleased be clarified should Adrenal Failure patients be on the shielded list or not? Two family members (including myself) suffer from the disease and we only recently received the at risk vulnerable list letter from our local council as unfortunately we had been left of even this list! It does feel like Adrenal Failure patients seem to slip through the net as such! It seems some people on here are getting shielding letters and others are not? 

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suep1954

Agreed Sophie

 

This all seems to depend on individual GPs' knowledge of Addison's. 

 

How about phoning your GP to duscuss? Your letter may already be in the pipeline (GPs are very busy right now) but if not you will be able to explain why you feel your condition makes you vulnerable. 

 

The 12 week shielding "from the date of this letter" seems a bit contradictory to me. Eg I received my letter last week (wk 6). If taken literally it means I will effectively shield for a total of 18 weeks, whereas someone in the extremely vulnerable group, who received their letter immediately after lockdown, will only shield for 12 weeks. I think a little common sense is needed when interpreting duration. 

 

Having said that I don't think the necessity for shielding is going to change any time soon. 

 

Take care and stay safe. 

 

Sue

 

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alison63

I have a letter from my Endo saying I am vulnerable not extremely vulnerable so I am going with that. I behave sensibly and follow social distancing rules. Shopping is a bind and I go out as little as possible. My main gripe is I haven't seen my grandchildren since the start of the lockdown. 

Alison.

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suep1954

Oh Alison, me neither. I miss them so much. Take care. 

Sue

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susie e

Not being able to have a hug from daughters and granddaughters is the greatest deprivation.  But thank goodness for Zoom - at least we get to natter and chat (and, in the case of daughters, raise a G&T toast.

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clemmie

I never received a letter despite injecting Methotrexate and Benepali for PsA, having AI and also hypertension and colitis. I am currently still stuck in the Middle East due to suspension of flights and the medical centre where I am staying contacted me and told me that I needed to stay indoors for 12 weeks. I already knew that I was very vulnerable because of my medication and had been shielding anyway. My own GP in the U.K. had not sent a letter. I emailed my surgery a couple of weeks ago, asking whether I should be shielding due to the medication and illnesses and had an email within a few hours telling me that yes, I should be shielding and attaching a letter stating this. If I hadn’t have contacted them then I’m pretty sure that I would never have received any communication and my surgery is pretty good usually. I finally received an email from my Rheumatology department last week telling me to shield but if I hadn’t been a half way sensible person then I could have been infected long before that! 

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suep1954

Hi Clemmie

 

Hope you manage to stay safe. It sounds like you have a lot to contend with. 

 

The first waive of letters were sent to the most extremely vulnerable eg those mid chemo, etc. We are definitely not in that group. 

 

The letters being received currently are the second waive. I think GPs are doing their absolute best to wade through thousands of patient records to find the vulnerable, while still conducting surgeries and keeping abreast of the ever changing Covid guidelines. 

 

We all know our own weaknesses and vulnerability. Sensibly, like you, we have been shielding ourselves even without letters. 

 

In the UK we all had the opportunity to self register as vulnerable via Gov. UK. That immediately prompted assistance with online shopping slots, protecting us from infection while shopping. 

 

The system is not perfect but considering this has all been thrown together in 7 weeks I think they are doing a pretty good job. 

 

Take care. 

 

Sue

 

 

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sophie32

Hi again

 

Is there any way any of the medical team who advise the group could please look into this urgently with the Society for Endocrinology re why some Adrenal Failure patients are getting shielding letters (even with no other conditions!) and others are just on the vulnerable at risk group? In the past I have been admitted into hospital with sepsis like symptoms due to dental or sinus infections that have gone out of control (even with increasing my normal dose of steriods) and have required IV fluids and steriods. I now have a rescue pack of antibiotics at home to try and stop the need for me been admitted so often into hospital. I have autoimmune inner ear disease, Hypophosphatasia (rare metabolic bone disease) and Hyporeninaemic Hypoaldostronism along with Adrenal Insufficiency. When speaking to both Consultant and GP they are only going off guidelines set by Society of Endocrinology saying we are in the at risk vulnerable group so how are others with the same condition getting shielded letters? Is the Addison's Disease Self Help Group sure we all shouldn't be shielding with Adrenal Failure??? My mom has had Addison's Disease for 30 years and something as simple as a dental infection has nearly cost her life through an Adrenal Crisis so it's very scary that something as serious as Coronavirus and will still aren't been formally put into the shielding group? For people who work (at the moment I am off as my workplace has closed) we really need accurate information as to what we are meant to do once lockdown eases if we haven't shielded letters where do we stand then?? Its so important to know. I would agree one of the most dangerous things is the supermarket shop and having to go shopping and dodging people all the time truly terrifying! But not everyone can just shield themselves away without a letter as you have to eat, work etc! Some of us have commitments to other elderly family members and so can't just shield ourselves away without some formal letter to do so again to do food shopping etc. 

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clemmie
11 hours ago, suep1954 said:

Hi Clemmie

 

Hope you manage to stay safe. It sounds like you have a lot to contend with. 

 

The first waive of letters were sent to the most extremely vulnerable eg those mid chemo, etc. We are definitely not in that group. 

 

The letters being received currently are the second waive. I think GPs are doing their absolute best to wade through thousands of patient records to find the vulnerable, while still conducting surgeries and keeping abreast of the ever changing Covid guidelines. 

 

We all know our own weaknesses and vulnerability. Sensibly, like you, we have been shielding ourselves even without letters. 

 

In the UK we all had the opportunity to self register as vulnerable via Gov. UK. That immediately prompted assistance with online shopping slots, protecting us from infection while shopping. 

 

The system is not perfect but considering this has all been thrown together in 7 weeks I think they are doing a pretty good job. 

 

Take care. 

 

Sue

 

 

Sue, I  am considered extremely vulnerable as I inject 2 immune suppressants weekly due to psoriatic arthritis and colitis. I did actually register on the government website at the very beginning and then again when I finally received the letter as I was still hoping to get back to the UK at that time but I have had no email, text or letter from them either and also no communication from any supermarket regarding priority online shopping slots so all in all, it’s a good thing that I can’t get home because I would have no way of shopping anyway! Thankfully, I am as safe here (regarding Covid 19) as I can probably be anywhere due to the fact that no one has been allowed to enter the country since 15th March and we have an almost 24 hour curfew in place. 
 

I am in no way trying to suggest that people aren’t doing their jobs at such a difficult time - as I said, my GP surgery is particularly good and I never cease to praise the staff who work there because I know that elsewhere in the U.K. doesn’t have such dedicated staff as we do in our village and they often go above and beyond!  - but it shouldn’t be so hard to get confirmation out to those who need it as to how they should be protecting themselves (if they are unsure, of course). 

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suep1954

Hi Clemmie

 

I'm glad you are safe where you are.

 

There are many queries regarding the definition of 'extremely vulnerable'.  The original parameters available to the medical profession were very narrow.

 

They have obviously been widened as the weeks have gone by. 

 

Personally I think that by widening the vulnerable group, who should be staying in their own little bubble, it will allow the vast majority of the country to slowly, slowly move forward with easing lockdown. 

 

For most of us with 'just' Addison's I think our lockdown needs to be individually tailored to our circumstances.......eg if you live on a farm in the middle of nowhere and have no contact with others then staying isolated in a bedroom is totally bonkers. Conversely, if you live in the middle of a city in a high-rise flat, then isolation is imperative. 

 

I choose to go out for a walk on weekdays but I have access to a broad rural area. I've been an outdoors person all my life and am aware that being shut in a brick box has bad repercussions for me. However, I give everyone a very wide berth.

 

I have not seen my daughters or my grandchildren at all and normally I look after them a lot. 

 

Like I say, this is just my personal  view and how I choose to deal with what is a very difficult situation for all of us. 

 

Take care of yourself. 

 

Sue

 

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gill hall

One of the Gov categories for extremely vulnerable people mentions people who " have rare diseases that increase their risk of infection" Why do Addisonians not them ALL have shielding letters?

Why is the Society for Endocrinology not explaining this to the Gov? My consultant quoted The Society of Endocrinology

saying we have "a slightly increased risk of catching infections" and they know it is a "rare disease" I just don't get it.

Where is the support?

I am about to have to go back to teach in a secondary school. Can our clinical advisory panel do anything, talk again with the Society for Endocrinology perhaps.

My GP won't recommend I have a letter. I nearly died last year hours after vomiting and I have other autoimmune diseases. I am really worried about going back to work. My son and I have been so careful for weeks on end.

I need that letter or I am going to have a hell of a battle with my headteacher and union ahead.

 

 

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The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1179825.

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