I had a cardiac device (ICD, like a pacemaker) fitted in 2017 and since then, my health has graduallydeclined (physically and cognitively). I am suspecting a link between the implant and trigger of autoimmune/foreign body response, but have been met with resistance fro the last 3 years from the cardiac specialist. Does any here have any experience of this, please as I have been battling for so long to be 'heard', and now I feel as though the NHS cannot help as it is so stretched - I accept I am low priority. I am working on asking for removal of the ICD to see if this wil help, but it is very risky and won't be fast process.
I am low risk for cardiac event and had device fitted due to genetics and family.
I have 'signs' of an autoimmune condition, yet a private rheum is insistent that I have fibromyalgia, despite previous abnormal bloods ANA 1:80 and all my awful symptoms. I cannot work, DWP won't accept that I am too ill to get PIP and so I am left with no financial help. GP ran additional tests recently and my ANA is now 1:160 homogenous pattern, I am chronically exhausted, brain fog, every joint hurts, migraines, sudden menopause last Oct, night sweats, tiny red dots all over body, random pains in chest/back, spasms...too many to list here. I have been referred to Neuro to rule out MS (have demylination on neck) but waiting list is understandably huge.
All I really need to know is, what is the normal process for primary care when a patient is presenting with these symptoms/results? My GP is lovely but said we must watch and wait. I cannot tolerate most drugs so I cannot even get any pain relief.
I am 44 and a mother of one. I have a heart condition (Long QT syndrome) but was quite fit and well prior to the operation to fit an ICD (defib). Any words greatly appreciated as I feel terribly alone and cannot find much specific to my circumstances. Even a recommendation of a private rheum in Home Counties would be gratefully received, so that I can start selling off stuff on eBay to fund it
Kind regards and thank you for your time,
PawPad
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PawPad
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It is very difficult to get answers and in my experience for specialists to coordinate and look beyond their speciality to try to offer a common answer or solution - unless you are in a specialised autoimmune unit.
In an attempt to help, have you thought that you might have an allergy to the metal in the pacemaker? Because of my dermatological problems I have recently had an allergy patch test and the result is that I am allergic to Nickel, Palladium and Cobalt. Also, if you are anaemic like me, the body absorbs more metal. They gave me a list of things to avoid and foods to avoid. The next step is to see who is able and willing to refer me to an allergist or do the Melissa test to rule out systemic Nickel allergy syndrome. There is a lot of research that corroborates this allergy with numerous autoimmune reactions depending on the amount of metal in your body.
The dermatologist says that the result of the patches does not benefit me to refer me to the allergist, but in my opinion the symptoms do. Also the dietician who told me to follow a FODMAP diet also tells me that there is no reason to go on a low nickel diet and try it, she also offers me no solution to my gastrointestinal problems.🤷🏼♀️ Come on I perceive that everyone is looking for the easy way out to do the minimum.
I leave you some links of interest because having a metal pacemaker they could replace it with zirconium or another metal if you are allergic.
Thank you SO much for taking the time to reply and for all of your words and the links! I am deeplt grateful. I actually pursued the allergy route to begin with, and had started making enquiries direct with MELISA yet the NHS cardiac team would not fund the screening, and referred me for NHS skin patch testing instead. Some reactions on my skin were 'possibles' but I was not told by the dermatologist specifically which, even though I was instucted to take photos of my back whilst at home and some were red and itchy. By the time I returned for the third appointment, they were all mostly clear so it was considered hat I am not allergis to any of the components of the device:(The dermatologist was quite dismissive of MELISA testing too, saying it would not show anything new if I did not respond to any of the patch tests; the advisor at MELISA said otherwise and seemed to know her stuff, so this is another avenue I am saving for as I am not giving up.
I never knew that about anaemia...I have not had a period since Oct 2021 yet I have episodes of low iron stores and related symptoms, and just assumed it was related to 'possible' autoimmune.
Thank you again, I truly appreciate the time you have taken
Hi.due to its complexity the road to a Lupus diagnosis is a long one I'm afraid on average it takes 6 years.mine took 5 years.even when you do get a diagnosis lupus drugs take up to 6 months to work. Your bloods are weak positive so wait and see is not uncommon.bloods can also flit between positive and negative. You don't mention a Ds-dna result and some Rheumatologists won't see you without a positive dsDNA. Whilst most lupies have a positive ana result a percentage of the population have a positive result without having lupus .about 25% of lupies also have fibro.there is an 11 point criteria for lupus you may find useful.keep a symptoms diary and pics of rashes is a good idea. Keeping stress to a minimum and staying out if the sun (factor 50 hat,sunglasses clothing head to toe all year) could improve some of your symptoms as they are both major triggers.Have to tried the lupus helpline or the CAB they maybe able to offer more advice especially financial .
Its tough but you are not alone ...we are all in the same boat we've just got different paddles. Kind regards SML x
Ah, thank you for your honest words and I love the phrasing about the paddles...so true. My recent 'flare up' of symptoms have coincided with hayfever allergies kicking in.
Every joint is agony, feel spaced out and I have the usual lymph lumps on my scalp and neck that have come up, but I went for a slow shuffle with one of the dogs (the GUILT I have now for not giving them the walks they used to have although they can go off the lead and run riot whilst I sit)and the sun really affecting my face despite sunblock, sunglasses and hair. I had a burning red rash on my cheeks after 5mins and I thought about malar rashes, but I am clutching at anything these days. Maybe the UV is so high lately? I never used to be one for health anxiety, yet I am currently convinced that I have Lupus, but maybe MS, but maybe RA, but maybe...My other test results were under range but still there, and GP said to watch and wait given how many symptoms I have...CCP was 3 U/mL, anti dsDNA was 3 IU/mL, ANA Hep2 Positive/1:160 Homogenous Pattern
I feel defeated as I have worked so hard to retrain and gain a degree in my profession, and I feel useless as I cannot even offer my time as a volunteer for now as my health is so flakey ever since I had the ICD implanted. I noticed a shift in my cognition and fatigue levels a year after the op, and really struggled to complete the degree as my brain faded!!
Thank you for all of your words, kindness and suggestions - it is greatly appreciated.
It is very hard to get through but you will and people here on the forum are very supportive and will help guide you.my Ana was 1:320 I have lung heart and kidney involvement and it still took them 5 years to put me onto immunosuppressant treatment.i was only sent to Rheumatology when I went stiff.that was 3 years ago.i also know its hard taking the dogs out I have 2 spaniels but you've got to keep moving..uv will be high now but uv from light bulbs and through windows also contributes.i had to wear my wooly hat on the beach this morning as it was too windy for my wide brimmed hat 🙄 and I needed a sleep when we got home.😴.if I'm out in the sun without protection my joints flare,I get a migraine and my fatigue worsens.2 days indoors it eases.do you see any symptom patterns? Keep going back and requesting full blood panels and Rheumatologist referrals.
That makes me so sad and frustrated that you and others have battled for so long, to the point where you are so ill from your conditions and parts get 'damaged' (my sister has Hashimotos so I know what can happen when things are left), before you are finally treated appropriately; I know how the healthcare system can work (or not) and have dealt with the fall-out, the 'casualties' in my counselling work in the past. I have never quite grasped the methodology of leaving patients until things are so bad that it'll potentially cost the healthcare system even more to treat that person.
I do indeed keep moving as it is beneficial and I *used* to be a huge walker, so I am not quite willing to give up just yet, but make allowances and accept that 2 hour powerwalks are no longer possible. Our fuzzy girls have a walk of an hour each every day and play with others in the fields, so they are very fortunate but I would love to join them rather than just shuffling/ambling.
Thank you again, I may have to start making some notes to see if I can identify patterns. I never used to get migraines whereas now I get about 2-3 a week! I will explore the connections with UV exposure; I have become more photosensitive in recent years.
Take care and thank you for making me feel so welcomed and heard X
I also have hashimos which is auto immune and if you have 1 A/I illness you are more likely to have others...I have 5 in total 🙄. I'm coastal so the beach is perfect for them to run /swim and for me to amble or sit.during a recent lung flare I threw sticks they swam 👍
I never used to get migraines and it took me sometime to make the connection.2 of the meds i take can make you photosensitive too so wearing a factor 50 hat is now essential .do you get them more in summer then in winter ?
Gastro issues are quite common too and often caused by food intolerances...for me suddenly it is dairy 🤷♀️.
Write down everything and anything ...we've all got symptoms lists as long as the proverbial barge pole .
So sorry to hear about your situation. Do you know your vitamin D levels? grassrootshealth.net/ and vitamindwiki.com/ are two sites that may interest you.
As a retired GP I am so sad that there is no better management available.
You, like many on this forum will have to become your own expert!
Hello there, thank you for your reply; it is greatly appreciated. Fortunately, I have been aware of maintaining my Vit D levels for years based on what I learned about the populations in the northern hemisphere and incidences of autoimmune conditions (even before I had any concerns/signs); I have been taking a sublingual spray for many years, now with a K2, but only due to self directed research and learning to be the expert on myself and taking repsonsibility. I have had my levels tested (paid privately) and they are optimal but I wish that the NHS were in a position to offer routine testing for all, along with all of the other vital MOT tests that could prevent so much for so many. I guess I am being a tad opportunitistic and not connected to the reality of the pressures (especially now) within the NHS/GP surgeries with my comments.
Kindest regards and many thanks for taking the time.
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although they can go off the lead and run riot whilst I sit)and the sun really affecting my face despite sunblock, sunglasses and hair. I had a burning red rash on my cheeks after 5mins and I thought about malar rashes, but I am clutching at anything these days. Maybe the UV is so high lately? I never used to be one for health anxiety, yet I am currently convinced that I have Lupus, but maybe MS, but maybe RA, but maybe...My other test results were under range but still there, and GP said to watch and wait given how many symptoms I have...CCP was 3 U/mL, anti dsDNA was 3 IU/mL, ANA Hep2 Positive/1:160 Homogenous Pattern
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