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Please tell me what's wrong with me - at the end of my tether

(65 Posts)
FinallyDiagnoseMePlease Mon 08-Dec-14 09:56:28

Hi,

10+ yrs ago I had Glandular Fever. That seems to have triggered whatever is wrong with me as I've been ill ever since.

About 6 months after it was confirmed I had Glandular Fever I was diagnosed with CFS/ME, as I was not getting any better.

I'm not convinced that I 'just' have CFS/ME. My symptoms are listed below;

Severe tiredness
Headaches
Dizziness
Balance - feel like I'm falling backwards
Pain in hips
Hives and rashes on jaw/face/neck - no known trigger
Flu-like feeling
Memory issues - Long term fine, short term not very good
Weakness in hands/arms/legs/lower back
Burning feeling in skin - back of calves and side of hand/arm
Pins and needles - arms, legs and mid back next to spine
Always cold, even in very hot weather
Stiffness in body in morning
Difficulty picking things up, opening jars etc
Get words mixed up when speaking and forget what I'm saying halfway through a sentence
Painful stomach - on Omeprazole
Muscles feel tight and 'squeezed'
Hands and fingers always feel tight and swollen (don't look it) plus skin on my finger pads are normally wrinkly??!
Back pain - physio didn't help
Sometimes have difficulty swallowing
Sometimes eye blur - eye examine normal
'Flashes' in eyes when I turn my head to the side (not every time though)
Sometimes shake
Dry eyes
Palpitations

I've been to the doctors numerous times and they always just do a blood test which comes back normal every time. I've asked to be referred to someone but 'There's no one to refer you to'.

I have reached my limit now. My tiredness rules mine and my family's life.

I would happily live with all my other symptoms if I could just get rid of my exhaustion.

Please can anyone help? I'm even willing to go to the woo side if it helps!!

mawinter Mon 08-Dec-14 10:52:50

I suffered from Glandular Fever a few years back and I must say i have many of the symptoms you have since years following it, but the list is far, far shorter.

Besides blood tests, I would strongly suggest you demand an Endoscopy be done, as well as a scan of your back. Many of the symptoms you have are suggestive of digestive issues, plus it sounds like you have some nerve damage in your back caused by a prolapse or something else.

RockinD Mon 08-Dec-14 12:05:35

Glandular fever is inextricably linked to thyroid disease which, if left untreated over a period of time, has a knock on effect on the adrenals . You have a fine set of intractable, non-specific symptoms there, but some of them shriek at me that this could be your issue, including the feeling cold, difficulty swallowing, the pins and needles and the cognitive issues.

Knowing what I know now, having been through this myself, I would want you to have had the following tests:

TSH (should be below 2)
FT4 (should be in the top quarter of the reference range)
FT3 (ditto)
TPO and TgAb antibodies (will be positive in auto immune disease)
Vitamin B12 (should be over 500)
Vitamin D (should be replete)
Folate (should be towards the top of the reference range)
Ferritin (should be mid-range and/or over 70)

If you’ve had lots of tests in the last few years, it would be worth getting a copy of the results, with the reference ranges, and plotting them on a spreadsheet so you can see if there are any trends.

Putting those results on a forum at www.healthunlocked.com will enable you to tap into a lot of expertise. I would recommend Thyroid UK if any of your thyroid tests are out of whack and Pernicious Anaemia if your B12 is low.

As for the Omeprazole – this should not be taken unless you have actually been checked and have been proven to have high stomach acid. Having low stomach acid shows exactly the same symptoms, but Omeprazole will only make them worse.

RubySparks Mon 08-Dec-14 12:10:14

I would also suggest testing for coeliac disease due to stomach issues, aching muscles etc can also be due to gluten so even if coeliac us ruled out a gluten free diet may help. Do you have family members with autoimmune conditions?

RockinD Mon 08-Dec-14 12:30:39

Good thinking Ruby

FinallyDiagnoseMePlease Mon 08-Dec-14 13:42:38

Thank you for all your replies.

I actually managed to get a cancellation appointment at the Doctors this morning. The Dr I saw thinks I may have Fibromyalgia and has referred me to a programme or something.

She has done some more bloods but expects them to be normal as they always have been in the past.

The Dr wouldn't do all the bloods suggested on here but has asked for Full Blood Count and has also put B12, TSH and Folate - so that's a few off your list Rockin!

winter I have had a back scan as I have a lipoma in my back. I asked about having it removed but was told that 'Lipoma's don't cause pain' and that on the NHS it's classed as cosmetic.

I've tried exclusion diets before and had no improvement in my fatigue. Over the years I've cut out gluten, maize, dairy, yeast, sugar etc.

Rockin I will email my surgery and ask for copies. Do you know if I have any right to them? The receptionist's aren't the most helpful people in the world.

The Dr who prescribed the Omeprazole didn't do any tests except prod my tummy and told me that my stomach was inflamed and gave me a 28 day course. It has helped with the pain.

Ruby No one else has any auto immune things that I know of.

I don't have a lot of money but do you think it may be worth trying to see someone privately? If so, what kind of Dr would I be able to see? Do you know of any reputable company that would do the bloods suggested above privately?

Thank you flowers

RockinD Mon 08-Dec-14 15:11:00

Fibromyalgia merely means that your muscles hurt, which you had probably worked out for yourself! Like CFS/ME, it is a dustbin diagnosis and the last refuge of a lazy doctor.

TSH won�t tell you much on its own, but we can deal with that when the results come back. TSH only tells you what your pituitary is telling your thyroid. It doesn�t tell you where your thyroid hormones are or whether you are under auto immune attack.

B12 and folate is a start though. Also if you�re in the UK, you�re almost certainly deficient in vitamin D and you might want to look into supplementing with gelcaps anyway, at least over the winter.

Under the Data Protection Act, your results are your data and you are fully entitled to them, the only exception being if your mental health is likely to be damaged by seeing them. Don�t take no for an answer.

The NHS won�t accept private blood tests, but I have on occasion used private tests that showed there was a problem as a lever to get the same tests done on the NHS. The major companies are Genova Diagnostics and Blue Horizon. In your situation, I would suggest that a full thyroid screen would be well worth the money.

grimbletart Mon 08-Dec-14 17:52:50

Finally - just on getting your results. I've had a barrage of tests done for hair loss recently and I simply had to ask the receptionist for a print out to take to my trichologist. No problem. As Rockin says says, they are your results and you are entitled to them.

Grammar Mon 08-Dec-14 18:06:12

Rockin I think to say 'it is the last refuge of a lazy doctor' is a bit unfair. There are many 'medically unexplained symptoms' that people have. It doesn't mean that doctors are lazy, it simply means we can't explain them or put a diagnosis to them.
In the future we may discover how to treat them, but I find it frustrating to hear people dissing the medical profession unreasonably. Sure, some doctors can be dismissive, but many are very sympathetic without being able to help much. You do realise,on the spectrum of evolution and human existence, we are barely in the middle ages of medical knowledge.

CatCushion Mon 08-Dec-14 18:08:51

Totally agree with everything RockinD has said.

Cold and weakness and fatigue can be symptoms of low thyroid function. Also problems with memory, brain fog etc.

Fatigue, joint and muscle pain, problems with memory can be symptoms of aneamia.

These are both very common and the tests you are getting should give you a clearer picture about those.

People often develop more than one auto immune condition. The facial rash (not the hives on the neck) could be a symptom of lupus (or a sensitivity to cosmetics, try not to worry) and is worth testing for at some point. Dry eyes is a symptom of Sjorgen's syndrome, but can just be due to dehydration and some of your symptoms suggest aspects of Addison's disease, another auto immune condition which can accompany thyroid auto immune diseases.

Grammar Mon 08-Dec-14 18:12:19

Also , I wouldn't pay to see anyone privately, you are not going to get any more/better treatment, BUT...you may find a quack who is more than ready to release you of some much needed funds.
Having said that...if you haven't had a coeliac screen, you probably should, no NHs doctor/GP will object to that given your symptoms, and yes, you have an absolute right to see your results and have copies, just ask the receptionists to print them out.

CatCushion Mon 08-Dec-14 18:27:20

Grammar, you say that but a lot of GPs will onle deal with one thing at a time. I had to really push hard to get aneamia and thyroid tested and treated, and then when symptoms didn't calm down, to have more serious things ruled out. That took about a year overall.

RockinD Mon 08-Dec-14 18:53:10

I wa

RockinD Mon 08-Dec-14 18:57:38

I wasted five years of increasing disability while my GP looked at each symptom individually and referred me. Time after time I was told there was nothing wrong because nobody looked at the big picture. It took another four years to get treated for what was really wrong.

I won't get those years back.

FinallyDiagnoseMePlease Mon 08-Dec-14 19:20:53

Rockin I'm in the UK and probably am deficient in Vitamin D. I'm very pale skinned so tend to just stay in the shade and cover up.

I've been looking at D3 vitamins and am definitely going to get some for me and the kids.

I took a look at those websites and the thyroid screening is a bit out my price range at the moment but I will take a note of what they've tested for and ask my GP if they will do that.

grimble I'll ask tomorrow when I ring for my latest blood test results.

Grammar I'll ask for a coeliac screen, thank you.

Cat I had a blood test last year re lupus because, when I go outside in bright sunshine, my nose and shoulders go bright red - I'm talking about walking to the end of the garden and back! Test was negative for lupus though. I've never heard of Addison's Disease so will mention it to Dr if I don't get any answers from this latest blood test.

Thank you again everyone.

CatCushion Mon 08-Dec-14 19:57:06

Id want a retest on the lupus. That sounds so much like lupus!

jarofpickles Tue 09-Dec-14 11:41:34

What was your eventual diagnosis rockin? And how can you diagnose high or low stomach acid?

HelloitsmeFell Tue 09-Dec-14 11:44:08

You have all the classic symptoms of fibromyalgia.

HelloitsmeFell Tue 09-Dec-14 11:44:59

Although to be fair, they are also the classic symptoms of lots of other things, which is why fibro is so difficult to prove and to diagnose I believe.

FinallyDiagnoseMePlease Tue 09-Dec-14 13:05:21

My bloods were all normal sad

Was really hoping that my b12 would be low as I know that's fixable.

The secretary I spoke to was really nice and is going to print all my previous blood results off for me.

ovaltine Tue 09-Dec-14 13:11:44

If they have diagnose you with CFS/ME then they should be referring you to a clinic so they can assess properly.

B12 normal via blood tests doesn't mean much as you produce in your brain and spinal too but they can't test these. You can get b12 injections (I've had friends who have been massively helped with these).

I think it's also worth looking at nutrition - this is the one thing they never seem to address yet can have the biggest impact.

skolastica Tue 09-Dec-14 13:23:54

I've had health issues for years - it just felt that my 'body balancing' mechanism was 'off'. Finally isolated it to a malfunctioning pituitary.

Hypothalamus/pituitary/endocrine signalling issues can give multiple diverse symptoms, which can have you chasing unproductively down different avenues.

Ask to see an endocrinologist - and listen toRockin

fambam Tue 09-Dec-14 13:29:43

I had glandular fever 18years ago and had many of the symptoms you describe above on and off for years after (although probably less severely)
Over the last year I have been on a no processed food diet and getting acupuncture (for migraines) and I feel better than I have done in years. I don't drink much anymore and think that helps too. If I stay with friends and eat a lot of processed food again I start to feel really crappy again. MIght not be the same for you but just thought I'd say!

notgivenupyet Tue 09-Dec-14 13:46:50

Could have pretty much written your list of symptoms. I am still in the system and still visiting doctors but have received some diagnoses that explain some of my symptoms but not all. I have something simular to eagles syndrome, with you saying you see flashes as you turn your head, headaches, difficulty swallowing, headache, balance, blurred vision, fatigue and memory issues would all fit that profile as would Intracranial Hypertension. I have both. I have all the rash issues you mention and have been tested for lupus several times as it seemed to fit but I don't have it and they still don't know what is going on with me. I agree regarding cfs and fibromyalgia being dustbin diagnosis and that how it would have ended for me without me fighting my corner with the GP. Google Eagles syndrome and Idiopathic intracranial hypertension and see what you think. Message me if you like.

FinallyDiagnoseMePlease Tue 09-Dec-14 16:17:26

Thank you for your replies, I will read them properly later but just wanted to put up my blood results.

I only asked the secretary this lunchtime for a printout of my previous bloods and it was ready by 2.30pm!!!

I hope some of you will be able to decipher the results, they haven't printed the range of which the results should be though.

8/12/14 Test date

Plasma C reactive protein = 1mg/L
Serum ferritin = 27 ug/L
Serum folate = 6.1 ug/L
Serum vitamin B12 = 208 ug/L
Serum TSH level = 1.78 U/L
Serum alanine aminotransferase level <7 U/L
AST serum level = 12 U/L
Total alkaline phosphatase = 38 U/L
Serum total bilirubin level = 6 umol/L
Serum albumin = 37 g/L
Glomerular filtration rate = 102 mL/min
Serum creatinine = 64 umol/L
Serum chloride = 104 mmol/L
Serum potassium = 4.7 mmol/L
Serum sodium = 138 mmol/L
Basolphil Count = 0.1 10*9/L
Eosinophil count = 0.2 10*9/L
Monocyte count = 0.4 10*9/L
Lymphocyte count = 2.9 10*9/L
Neutrophil count = 2.6 10*9/L
Red blood cell distribution width = 11%
Mean corpusc. Hb. conc. (MCHC) = 325 g/L
Mean corpusc. haemoglobin (MCH) = 30.1 pg
Mean corpuscular volume (MCV) = 93fL
Haematocrit = 41%
Red blood cell (RBC) count = 4.4 10*12/L
Platelet count = 312 10*9/L
Total white cell count = 6.2 10*9/L
Haemoglobin estimation 132g/L

There are a few more blood test but they're very long so I won't put them up unless someone asks!!

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