New in forum no idea what's wrong with me

I've posted in other forums but wondered if anyone here could have ideas as to what is wring with me.

In 1992 I had tingling (paraesthesia? ) in my lower legs that appeared after waking and went away when walking. I also felt generally weak. I had tests at the time, on my heart, which said that it was working perfectly after a stress test but I was exhausted. The cardiologist suggested I saw a neurologist but I was never referred. Since then I've ben coping fairly well until Christmas 2014 when I had a gum infection under a good tooth. I had the tooth removed after 2 months of illness and felt better, but a long way from well.

After many GP visits and painful arms a GP tested me for vitamin D3 and it was very low, so I was told to go and buy a supplement. I found I couldn't buy over 1000 IU at the pharmacy without a prescription so eventually found a 3000 IU oral spray which did increase my D levels to low on the 'normal' scale.

Over the last year or so my condition has deteriorated and now I have tingling in my arms, legs, other parts of my body including head, feel ill al the time, get short of breath with minimal exercise, wake with hot flashes after 5 hours sleep, and have recently been diagnosed with a heart arrhythmia. I've been waiting over 3 months for a cardiology appointment but know it takes 4 to 6 months for a first consultation on the NHS in this area and I don't know if the arrhythmias (so far just classed as SVT) is the cause or a symptom of something else.

I feel ill al the time, although some days are better than others. I can't exercise much as that makes me worse and increases the arrhythmia I think,

Al my bloods have been in the 'normal' range for everything and the heart arrhythmia (cause still unknown).couldn't be picked up in a resting ECG in early November but was recorded as SVT with a 24 hour ECG in late January when it was worse. I've ben prescribed beta blockers which slow my heart but do nothing else and have side-effects. When I reported weakness and a spinning head to my GP she assumed it was a side-effect and reduced the dose..

Doing anything is an effort, U sleep with the sound of my heart in my ears and wake too early with hot flashes and sometimes a dull ache either in my upper abdomen and/or lower (bladder area?). I'm at my wits end just trying to cope with thus.

11 Replies

  • Hi, within your blood tests have you got a b12 one?

    I see you have been on thyroid forum i assume that you were given a full screening by your gp but its not unusual for only a basic test to be done. Many on the thyroid forum resort to getting a private one done.

    I also note that 5 years ago you were given ppi's, are you still taking them?

  • Lisahelen, I've had signs and symptoms that could be hypothyroidism, for years. Lack of energy, very dry skin, hair loss. weight gain (been able to lose some but can't reach a normal BMI although I eat reasonably healthily and have small meals. I've had several TSH tests and even one for free T3 once, but they're in the normal range so nothing more done.

    I was on PIs for several years as U was taking NSAIDs and anti-depressants which gave me heartburn. I've not taken NSAIDs for several years, or PPIs..I still get heartburn (GERD?) but rarely since stopping SSRIs. When needing something for SSRI sides I used OTC ranitidine when I needed it, now only a rare antacid.

    The NHS doesn't seem keen on any tests other than TSH. I joined the thyroid forum because I had a friend with thyroid problems and thought I might have hypo because of symptoms, but I can't afford to go private and it would be crazy to buy anything online 'in case it worked'.

  • The stomach environment is supposed to be acidic to digest our foods and we produce less acid as we age. I take apple cider vinegar with meals because of that. I believe that being prescribed antacids for several years messed my digestive system up.

  • Hi Maggie maybe

    So sorry to hear you are so unwell you need to see a way forward for your health. From what you've said it points to different possibilities however there are similarities with B12 deficiency. Have you had a blood tests which include B12,ferritin and folate as they will give you a good indicator as to the possibility of amemias. If you are able to post your results there are people who can support you


  • Hi Mark and thanks for your thoughts.

    I think I had a B12 test 18 months or so ago when I found a GP who dared do a test for vitamin D. My D level was 21 but if I remember correctly I had a 'within normal range' B12. But back then my main problem was pain in my arms and difficulty concentrating. Although I'd had tingling in my feet for years I suspected it was caused by nerve damage due to injury to my legs and it stayed the same for decades. Only in the last year has it got worse and spread.

    I'm going to try a B12 and folate supplement but if it is anaemia caused by being unable to absorb B12 that won't work.

    I know that even my heart arrhythmia could be caused by both thyroid problems and anaemias although maybe everything is caused by my heart and I've only recently become aware of it.

    If I had the money I could have the tests I want done privately but I figure I can afford a single consultation without tests. I've noticed that with the NHS in crisis fewer tests are done and waiting lists for consultants get longer. My best friend passed away from heart failure in February and he was still having tests, tool at least 6 months to get a diagnosis. After his death the consultant said that if he'd sought help earlier he probably wouldn't have died. That alone increases my own worry.

  • I would have a re-read of your threaf of 5 years ago on Thyroid UK. Lots of helpful discussion

  • Marz, I stil read the Thyroid forum. I agree, there is a lot of helpful discussion.

  • MaggieMaybe - sorry I did not mean the Thyroid Forum in general - but in particular your very OWN thread with helpful replies of 5 years ago :-) Just wondered how much progress you have been able to make with the suggestions in the link below :-)

  • Before you supplement anything please try to get your gp to do b12 etc bloods because if you take anything it will skew the results and possibly mask a problem.

  • What do they mean by a "normal" B12 level? Here in the US they define normal B12 as 200. I understand in the UK it is 500. That's still too low. Whatever they call a deficiency level, it is far below "optimal". I have poor absorption of B12 and D due to an esophagectomy in 2006. I take a 2500mcg sublingual tablet every day, and that works better than the monthly shots. I have to take 10,000 units of D3 to maintain normal levels. As for thyroid problems, it can often be traced to an iodine deficiency. I follow nutrition author Adell Davis's recommendation, and put a few drops of tincture of iodine in my drinking water once a week or so. I also make sure I get enough omega three oils in my diet. I still have neuropathy, but a lot of other things cleared up on this regimen.

  • I saw my GP (the one I see most often) on Wednesday and gave him a list I'd made of all symptoms. The appointment was a prescription review but as the beta blocker I'd been prescribed recently and was getting side effects from but not much benefit I figured that if he had the time (officially consultations here are 5 minutes - ridiculous) maybe he'd look into things.

    The result was not blood tests although he did check my pulse. He said that my symptoms were probably caused by anxiety and gave me fluoxetine and instructions to see him again in 3 or 4 weeks.

    With the fluoxetine the palpitations have almost gone but my heart rate is often under 60 and today I get a little dizzy standing up. I'm still in the beta blocker, decided I might as well take B12 (not had hot flashes waking me but still wake up a bit sweaty) so maybe it's helping a little. My GP said that when I eventually see a cardiologist he'll probably say the SVT discovered by a 24 hour ECG is caused by anxiety, but it seems that everything else is ignored.

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