Can anyone help me please?

[Bunny12345678]

I'm looking for advice as I'm getting desperate, I've been unwell for 8 months now, at Christmas I kept feeling ghastly and faint, palpitations and shortness of breath, I now have aches in my neck, above right breast and posterior right rib ache. My legs feel like jelly and head foggy plus tinnitus, bowels also not normal. Gps have given up on me so having to try and find any other way to get help. Vit d 27 in April and a Cardiologist said I have inappropriate sinus tachycardia, this has settled though. I've had some private bloods just come back. I'd really really appreciate any advice please.

[Nackapan]

Go cant give up on you. See another. Get more referrals if Go out of their depth. Ask for thyroid ferritin iron folate . Or show theses resuktscand get more dine that havent been tested.

Functional b12 deficiency existed. Perhaps look that up too .

So many symptoms overlap with si many conditions.

Keeo going to get sine answers and the interested doctor to put the jigsaw puzzle together.

They are missing something it's for them to refer to try and get you well.

Keeo a log of your symptoms . List the 5 that affect you most.

Is your vit d level up now?

[Bunny12345678 in reply to Nackapan]

Thankyou for your reply, vit d is currently 75, I'm on 4,000iu a day. I've changed practice too, they're all the same, because everything comes back normal, I've had to battle for every test I've had so far, they keep trying to pin me with anxiety, but it definitely isn't. I'll look at a full panel of bloods like you suggest, I've found a good pharmacy that do blood testing near me.

[fbirder]

B12 is nice and high, so you're unlikely to be suffering from a deficiency. You could ask for an MMA test to be sure. MMA is a chemical used up in one of the reactions mediated by B12. If there's not enough B12 getting into the cell then MMA levels will go up. But that's unlikely.

I presume you've had a full thyroid screen and an HbA1c test.

[Bunny12345678 in reply to fbirder]

I did a Blue Horizon capillary test a few weeks ago and that tsh was 1.81 ( 0.27-4.20)

ft4 13.0 (12.0-22.00) ft3 4.02 ( 3.1-6.8) so was thinking of getting a private venous test done to be sure. GP did Hba1c and apparently 'normal'

[Gambit62 Administrator in reply to Bunny12345678]

suggest that you repost the thyroid results on the TUK forumhealthunlocked.com/thyroiduk

[RobinBarron]

Have you been tested for Lyme Disease? If not, I’d get tested. Make sure they use the Western Blot test- not the Elisa.

[Bunny12345678 in reply to RobinBarron]

Thats interesting, why do you suggest this?

[RobinBarron]

I’m suggesting it because I had many of your symptoms way back in 1991 when no one knew much about Lyme. I was very very sick for months and after I was finally diagnosed, it took me 2 years to recover. I was lucky to find an LLD ( Lyme Literate Doctor) who has since become quite famous in the field. She fought my insurance company for me to get an extended course of IV antibiotics. If you think there’s anyway you could’ve gotten a tick bite, get a Lyme test ASAP. I never saw the tick and never got the bulls eye rash, btw. Bunny, it devastated me. My daughter was a toddler at the time and I could barely care for her.

[Bunny12345678 in reply to RobinBarron]

Which area do you live? I'm in North Lincolnshire. How did you get tested please? I can't recall a tick bite...I'm absolutely wiped out at the minute, I've lost my job and my home, had to move in with my parents of which I'm grateful for...

[RobinBarron in reply to Bunny12345678]

I’m in the USA. I really don’t know the prevalence of Lyme in the UK. Google Lyme Specialists near you. I had almost all your symptoms. The only symptom I don’t recall is the weakness in your legs. Every other symptom you described I had. Were you walking anywhere in or near a wooded area before you got sick? Did you by any chance have a rash? Like I said, I did not. Not every one with Lyme gets the bulls eye rash. The tick could literally have been the size of a poppy seed or even smaller.

[Bunny12345678 in reply to RobinBarron]

Thankyou for getting in touch, I'm looking into it as we speak, I appreciate your help. I've been ill for 8 months now, did you see many drs before finding the right one?

[RobinBarron in reply to Bunny12345678]

First dr said it was bronchitis. Two months later i went to another dr who tested me for Lyme and I was positive. I didn’t even know what Lyme was and hardly anyone has personal computers 1991 to research. Problem was he undertreated me with not the best antibiotics and not long enough. Then I found Dr Lesley Ann Fein, a Rheumatologist who specialized in Lyme. She saved my life! So did my holistic natural path Chiro who helped me with my screwed up immune system from being on so many antibiotics. Like I said, I don’t know if Lyme is as prevalent in the UK but it was and still is very bad in certain parts of the USA. I was in So much pain- neck, back and between ribs. My neck cracked just moving it. So much inflammation in ribs( called costochondritis)that one side of my sternum stuck out about an inch. Terrible tinnitus. Terrible fatigue. It’s a simple blood test. It can’t hurt to get it done.

[Bunny12345678 in reply to RobinBarron]

That really does resonate with me, you're right.

[RobinBarron]

The Elisa is a screening test that may show false negatives. The Western Blot shows various bands that are more definitive for Lyme. These tests are tests for antibody response. There is still no actual test for Lyme, but the Western Blot is pretty accurate.

[RobinBarron]

Correct. Post Lyme , also called chronic Lyme does not generally respond to antibiotics and Mega doses of antibiotics have their own host of problems. However, acute Lyme, untreated , can be deadly. Lyme is a spirochete and can hide in the body. It can create bio films which can be virtually impenetrable in certain cases. I believe , without the proper course of antibiotics, which I finally had been given, I wouldn’t have recovered. People do die from Lyme.

[Woodswefn]

Except for the aches, the symptoms are also consistent with B12 deficiency. If the aches are caused by nerve pain, then they are also consistent.

Six doctors in different clinics and hospitals couldn’t recognize my classic symptoms of severe B12 deficiency. I read hundreds of pages of medical literature before I saw the connection between my increasing and worsening symptoms.

For a number of reasons, the blood tests currently in use for B12 are up to 33% inaccurate. There are not many medical experts in this area, but those few recommend diagnosis by symptoms and treatment by injections at least every other day until maximum benefit is achieved: up to 8 weeks.

The single most comprehensive source of information i have found (after reading 24 sources) is the nonprofit website b12d.org. It contains a downloadable book, written by a doctor in the UK with 46 years of experience. Diagnosis and treatment are complicated, and not understood by most doctors, so please read those chapters at the very least.

If you can’t find a doctor who will take the time to learn your whole story and see this through, and you don’t want to wait to find out if Lyme disease treatment works, there is no harm in trying the B12 “loading dose” protocol from the book.

B12 is water-soluble and benign. There is zero evidence of toxicity, after a century of high-dose injections in clinical practice.

If you are B12 deficient, and not on a vegan diet, the deficiency is caused one of several absorption problems. So there is no way to know how much of the oral supplements are getting through. One study says tablets, lozenges and drops are just as effective as injections, but the experts with clinical experience say that most people who are severely deficient need to follow the injection protocol.

As mentioned in previous comments, other conditions have similar symptoms. Your illness could be Lyme disease. Some illnesses that have the same symptoms, such as chronic fatigue and fibromyalgia, are most likely mis-labeled B12 deficiency.

Folate and potassium are used in the same chemical reactions and processes that use B12, so those levels may drop once B12 treatment is started. If levels of those are too low, recovery will be hindered. These are just some of the good reasons to read the book.

Improvements come very slowly, in very small increments. You may have to stick with the injection program for eight weeks to gain the full benefits. Keeping a daily diary will help you to see whether or not symptoms are being relieved over time. I wondered whether it was really working after a couple of weeks, but I looked back on my notes and saw that there was a continuous progression of very small changes and that I was getting stronger.

[Bunny12345678 in reply to Woodswefn]

Thankyou very much for taking the time to reply to me, it's very helpful what you advise, I shall look at that website too. I'm currently awaiting some blood results that I had done yesterday privately so I shall post them on here when I have them, I've re-checked fbc, u&e, lft, tsh, ft3, ft4 and Mg, crp. I'm currently feeling wiped out, it keeps doing that about this time of day and I have this worrying ache to the right side of my back which hasn't gone away since early this year.

[RobinBarron in reply to Woodswefn]

That is wonderful advice, and I had forgotten to mention chronic fatigue and fibromyalgia. Interestingly enough, in more recent years, I have been diagnosed with both fibromyalgia and a b12 deficiency . I inject hydroxocobalamin monthly and take a sublingual b12/folate tablet daily. My current rheumatologist believes the fibromyalgia is a result of the Lyme I had 30 years ago.

[Bunny12345678 in reply to RobinBarron]

It's helpful when you can identify where it all started isn't it?

[Bitsa]

Hi interesting reading about your ailments..as sounds very similar to mine..I've been suffering for 4 years..doctors useless. As it's a class system..if the queen was I'll she would be sorted ..you know it's TRUE......all I can suggest. Is change your life style.. the tinnitus is horrid. The aches and pains too..but taking note of your life style really does help..every day I wake up feeling I'll. Tired.. and now a bit depressed..life is shit when you feel this way..I'm 62...a good weight..and pretty fit..I work with some over weight people and there health is fine...pisses me off .ha...keep a healthy mind

[Tanyanarialucia1965]

I was this poorly too, for me it was coeliac disease which leads onto a host of other things, b12 deficiency, anaemia, gluten ataxia ( google for symptoms) blood tests are unreliable and I was only diagnosed on my third biopsy into my small bowel, don’t give up , I kept researching until I finally got there!