I was diagnosed with AF during covid. This was about 6 months after I had to have my thyroid zapped so I’m now thyroid free. After tests it was found that I had very little vitamin D, B12 and folic acid so I now have to take these daily. I was also given heart medication and a blood thinner. I never seen my GP and had no appointments with a cardiologist. I paid privately and he took the blood thinner of me not needed. I waited again for 2 years to be seen at out patience but no appointment was forth coming so due to suffering palpitations and fast heart rate I paid again this cardiologist after the failure of treatment I was put on a waiting list for an oblation that was 1 1/2 years ago. I have had a routine follow up and was diagnosed with heart failure and damage to the heart and now have to take a fluid med.
I have no information as to whether they still will operate or what my prognosis is help!
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Bromly1
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Are you also a member of HUs Atrial Fibrillation Support group.If not , it would be worth joining and adding this post because the members are all Afibbers some of whom have had a similar experience to you and they will be able to explain what options they had , as well as giving you more positive stories of the progress after treatment.
As an Afibber with functional Vitamin B12 and Folate Deficiency which was overlooked and under medicated and affected my heart I can say one important thing is to persist with your GP. Not only to ask them to write to cardiology to chase up your appointment but also to get your vitamins properly tested and monitored because they do have a nasty habit of overlooking these routine but preventative tests.
You should also pester Cardiology if you've received a letter saying you are due an appointment and on the waiting list. Remind them you exist and how long you have been waiting , far longer than is considered as a reasonable delay. Ask for a call back or an urgent appointment to discuss if you can still have an Ablation or not now you have new information from your private Cardio that the NHS one may not have received.
Often it's these calls from the patient that can fast track your appointment quicker than a letter from the GP.
If you don't get any response, send a letter to the Chief Executive Office of your NHS Trust hospital to complain about the unacceptable delays stating the dates and an explanation of how they will move your treatment forward, this gets a response that a complaint to the Department or PALS doesn't.
The boss never likes to see complaints as they must go on record and affect their league table status so they usually jump up to get things moving very quickly.
Basically, it's only by being rechecked by Cardiology and an EP that anyone will be able to state whether you can still have an Ablation or will require different treatment. It's only at an appointment that they will be able to assess if your heart health and heart failure has been controlled or improved. The level of heart failure and other health factors affect whether they think an Ablation is safe or will be successful or not. Without an Ablation lots of people with aFib and heart failure and other conditions still live well with a controlled cardiac output using medication and self care, so don't worry that not being able to have that option means you are going to get worse or beyond treatment.
If you are only taking oral B12 retesting is required ( stop supplements for four days prior to the test) , if it's still insufficient you need to have B12 injections. After loading doses you should receive them every three months for life without further B12 testing . They should not just be stopped because the GP has this wacky idea that B12 problems that are caused by illness rather than diet insufficiency is cured. It isn't the level will appear high but will rapidly reduce again in these circumstances. Thyroid loss is a key cause for the need for Vitamin B12 injections.
You also need Folate supplements because B12 treatment can mask Folate Deficiency and that can cause the same symptoms B12 Deficiency.
You usually still need a daily oral top up of B12 and Folate even when you receive injections or infusions of these.
Low BVitamins can cause Vitamin D deficiency and make it harder to reverse. My Vitamin D remained insufficient despite years of high dose supplements until I was properly treated for B Vitamins deficiency. Doctors assume that Vitamin D supplements that are inadequate in dose will rectify the problem and don't retest( because they assume it caused by diet) . If you haven't had a test in the last 12 months , or 6 months after testing as Deficienct firmly request one as you may still be Deficienct.
A higher dose Vitamin D spray is more easily absorbed by people with thyroid and functional B12 issues, often we can't get much from a tablet. I use BetterYou D3 and K2 spray.
With so much going on you should also request an appointment or referral to Endocrinology because they should be monitoring your thyroid health requirements and double checking your Deficiencies, GPS have neither the experience or knowledge to give the best advice for functional medicine issues.
I know how stressful and frustrating dealing with various life long conditions that bash heads together can be, so I empathize with what you are dealing with. It begins to feel like dealing with your health is a full time job but you don't need to feel alone. Keep posting on various forums with questions but also if you just need to get something off your chest and receive a few kind words from people just like you , take care , Bee
Hi I have read you reply several times to fully understand. I was prescribed vit 12 vit D and folic acid in tablet form which I take daily. After doing some research I take more than prescribed vit D, are you saying that maybe I need more of the others?
I get 8 weekly blood tests for my thyroid and now because of diuretic my GP will not tell me any results if I ask to have my vit & folic tested I will get a resounding NO
How do I sign up to AF group I’m not very technical
Your GP does not have the right to refuse you access to your test results and medical records.You have this right under the Data Protection Act.
You can choose to access your records via an NHS app online or an app used by your GP surgery if they have one , although some surgeries still have poor access to results and records online.
You can go into your surgery and fill in a record request form at the reception , stating which results you are requesting , for example , my last six sets of blood test results or previous letters from Consultants. Often if you wait they will print these off immediately for you or ask you to call in to get them later. They cannot refuse your request.
If your GP and surgery still refuse your request you can inform them that you will report them to your local Integrated Care Board ( ICB) for breaking Data Protection rules if they do not process your request. The ICB is the external board that deals with complaints against GPs. Dentists. Nurses and Pharmacists in your area. Very few doctor or practice managers will continue with inappropriate behaviour if you politely but firmly explain you will make an external complaint.
In your situation I would recommend that you request your blood tests first so that you can assess if you can use these results to firmly request other blood tests or alterations in your doses of medications.
I would also put in another request for copies of letters that you may not have received from Consultants you have seen.
In future I would suggest that you remember to ask any Specialist that you see for a hospital appointment to copy you in on their letters. It's important for all patients to get these hard copies.
First, to make sure they have been sent in good time giving your GP recommendations that you'd discussed at the appointment.
Second. to chase up getting these recommendations of care or medication sorted out on your surgery record or to help you question why your GP hasn't followed these recommendations.
Unfortunately, without these letters a patient will often find certain GPs will not follow Consultants recommendations, often for economic reasons rather than medical ones.
If you have various health conditions , particularly ones that involve thyroid function or certain medications that can alter how well you absorb or metabolise vitamins NICE recommends regular monitoring of vitamins B12, D and Folate as well as Ferritin because insufficiency or deficiencies can commonly occur even if you are taking oral supplements.
The only way they can judge if your diet and supplements have corrected an insufficiency or is successfully preventing it is by doing the tests.
Unfortunately many GPs put people on oral supplements and then try to refuse testing because they assume the supplements must be working.
There can be various reasons that they aren't.
NICE guidelines recommend 6-12 month testing for full blood count , kidney function , Vitamin B12 , Folate and Iron for people with thyroid problems , reoccurring Anaemia or deficiency, and if you are on medications that change your stomach acid such as a PPI like Omeprazole, antacids and also on other things like statins, Steroids , thyroid medications and certain antidepressants and pain killers. Earlier testing after 3 months is recommended if you required oral treatment since your last blood tests for these nutrients . Vitamin D is allowed as an annual test.
Although if you've had these tests done in the last three months and they were within normal range most GPs are within the right to refuse a repeat because they are often following laboratory regulations .
You could look up these recommendations and politely point out to your GP what they are or show them a print out to make another request for the blood tests.
If they still refuse ask them to give you a medical explanation for their refusal and then point out that you requested that because you might sadly need to make a complaint about not receiving these tests , especially as you are still having symptoms despite oral supplements.
If they still refuse ask to get a second opinion from another GP at the practice , and make sure you do not get appointments with this poor GP when you ring for appointments in future. If you still receive no help you can choose to do a private test first yourself and if it is low show this to the GP to request the official test and receive treatment.
You can also complain to the ICB about the lack of monitoring and preventative care you are getting from your surgery.
If you are thinking about seeing a private consultant in the future request copies of scans and previous tests and letters from your NHS Cardiology department at the hospital records department. They will need a form and you will require ID to collect them. This can save you money from preventing the need to repeat scans and make it easier for a private consultant to help you.
To sign up to the Atrial Fibrillation Support group just write " Atrial fibrillation support " into the search box at the top of this page.
A little box should appear that says sign me up now , or you will see a list of posts on the page that are on that forum.
You can press on any of those posts and just press the Join box on the top of the page.
I seen a cardiologist over a year ago and he told my GP that when I reached the age of 65 that I needed to go back on a blood thinner. I have indeed reached 65 in may
I received a call from my practice and was informed the GP did not think that was best and so he would not be putting me back on the blood thinner 🤷🏻♀️
I'd rather change my GP than take that advice personally. If you have a stroke will he take responsibility? There is no coming back from a stroke and the severity and loss of a part of your brain and I'm speaking from experience. What's he saving the NHS? £5 a month in the short term, but the cost of care if you have a stroke will be huge.
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