I'm 28 years old and have been feeling really ill for about 7 or 8 years. My symptoms include:
Feeling exhausted all the time
headaches,
dizziness/vertigo (every day when I wake up, and also if I exert myself at all, but even if I'm not yet out of breath)
feeling thirsty all the time and always needing a wee (when I go to the loo I never feel like my bladder properly empties so already need a wee before I've even washed my hands)
A weird sort of tingling that will only stop of I touch it, I get this in my knees, arms, scalp, nose and cheeks (not necessarily at the same time)
A loud thumping/fluttering in my ear when I touch my face (this has been happening as long as I can remember, although it's getting steadily worse, and i no longer need to touch my face for the sound)
My hands often go numb and I get pins and needles
I often feel bruised all over, even though nothing has happened to me
In the last couple of years I've had real sleep problems, waking up at 2 or 3 in the morning every night and not getting back to sleep
Painful joints, especially my wrists
I get very bloated, to the point that I look around 8 months pregnant quite often.
I've been to the doctor quite a lot over the years, but they have been very dismissive. One of them said that if it was anything serious I would be dead by now so I should just learn to live with it.
I have started seeing a new doctor who said it was probably nothing but I burst into tears and begged her to do some blood tests. I told her I had been thinking it was maybe a b12 problem. She said none of my symptoms would be expected with b12 agreed to do a full blood test.
When I went for my follow up appointment she said the tests had shown nothing but a slight vitamin d deficiency (40 mnol/l) but that that's normal as the weather hasn't been great, and everything else is absolutely fine.
The only thing is, all the results get put on our online patient portals, and the ones that are out of 'normal range' are highlighted.
Most of them were in normal range, including plasma b12 level (507 ng/l)
However, the things (as well as vit D) that were flagged as outside normal range were:
MCHC - 358 G/l
Platelet Count - 133 10*9/l
Serum Bilirubin level - 28 umol/l
My bilirubin has been elevated for years, and that was the only other thing that the doctor mentioned, but said that if my last doctor knew about it and wasn't worried then it's probably OK.
Sorry about the essay. The things I want to know are:
a) As my B12 levels looked fine, do you think it's not P.A.? I'm thinking ordering some tests online as I'm not sure the one the doctor did was active B12, but maybe that doesn't matter?
b) Is it normal to be out of the 'normal range' on a few tests?
Any answers would be greatly appreciated.
Thank you.
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Sick-and-Tired
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They need to do a pariatel cell test to determine it id think. My b12 levels are always showing up as perfect but my body can't absorb it hence the anti pariatel cell antibody I have. My dr only tested me for it because I reminded him of a girl he once treated. Took some months to figure it out but he did and treated her. And so he knew what to test for wkth me. I wish you luck. I was diagnosed with fibromyalgia and my Dr said it was a lazy diagnosis meaning they gave up on me. Turns out it's pa and I also am severely anemic it doesn't show up on the iron test only the ferritin other doctors dismiss.
Also, my liver enzymes and red blood cell count was elevated. My chiropractor ordered the tests then I saw a naturopath where he diagnosed me afrer more testing
I am so sorry doctors are so horrible. They're mainly un educated. I saw a couple more doctors for a second opinion my chiropractor wanted me to see. He trusted the naturopath but wanted more opinions. The others would have let me died. Had absolutely no interest or knowledge of the anti pariatel cell antibody and just told me I was depressed and needed medication. I yelled at them and cried and left. I'm over doctors completely. One even looked at my 6 ferritin and told me I wasn't anemic. HA. They know nothing
I'm going to see a chiropractor in a couple of weeks for the first time. I hope he's as good as yours! I agree doctors don't seem to know much about nutrition and deficiencies. I will only see a doctor now in an emergency.
I hope so too! So crazy having a doctor care about his patient and when normal testing is done and results come back normal he didn't say I was crazy. Told me to go to a naturopath because something isn't right with how I feel.
Hi sorry your feeling so ill has your Dr ever done a thyroid test as a lot of your symptoms are what you have put down . I have hashimotos thyrotoxicosis. Under active thyroid . And also b12 deficienc and have injections every 3 months for life . If your having more digestive symptoms please as your Dr to refer you to a gastrologist as they check everything and if found pa or b12 deficient he will tell your Dr to give it you x
Have you had an IFA (intrinsic Factor Antibody) test? This can help to diagnose PA but is not always reliable. The "BCSH Cobalamin and Folate Guidelines" mention Antibody Negative PA on page 29. I gave a copy of BCSH Cobalamin document to my GP.
I have read that it is possible to have severe B12 deficiency with B12 blood levels that are "normal" range. Recent documents make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range.
Bilirubin seems to be something which is produced when red blood cells are broken down by the liver. Has your doctor ever mentioned Gilbert's Syndrome?
Although they are within normal ranges what are your values for MCV and MCH? If they are both towards the upper end of the range that would point to B12/folate deficiency. Have you had your folate tested? Do you know your ferritin level?
As to the bloating - does it tend to get worse during the day? If so, ask for an h pylori test.
I would ask for a thyroid function test and blood glucose. All of those symptoms could be attributed to hypothyroidism or diabetes too. Hope you get some answers soon.
The thumping sound in your ears could be a symptom of iron deficiency, I had the same symptom for a long time but no medical interest when I asked about this, recently diagnosed with iron deficiency and having researched symptoms found this is one of them. I have PA and Hashimoto's, symptoms are all quite similar and create a difficult puzzle when trying to decide what causes which symptoms. Lack of iron aggravates symptoms of both PA and Hashimoto's . Sorry you are having such a difficult time finding a diagnosis, many of the symptoms you describe I have experienced, with a definite diagnosis of PA and Hashimoto's. The thumping sound in my ears which seemed in time with my pulse is receding with iron medication to correct deficiency. Hope things get better for you soon.
I'm so sorry that you feel so bad. As regards to your B12 level, it is possible to have your serum level and have P.A., no matter what your doctors say. A lot of your symptoms point to P.A. I have P.A diagnosed by a IF test(had to go to a private doctor to get this) Also had terrible bloating with burping and some pain. A gastroenterologist told me that as a P.A. Patient I would have low or no stomach acid (hydrochloric acid) This causes many problems which the NHS do not treat . The stomach contents do not get digested properly, due to lack of acid, and that is when the bloating occurs. Probiotics and raw organic sauerkraut have put me right. No more bloating now.
If you don't get treatment soon , I suggest self-injecting with Hydroxocobalamin.( that's the sort ofB12 that the doctors use.) Give yourself 8 injections in 2 weeks(loading dose) THen try weekly, fort nightly or monthly You also need plenty of folate(leafy green vegs or supplementing ) you can get all the help and information here, should you decide on this action. All the best to you.
Hi, I've had 2 blood tests but both came back negative. I've heard these can sometimes not be accurate though, so I'm not sure where to go from here in that respect.
My understanding is that GPs can test your IgA (an immunoglobulin) if Coeliac type symptoms continue after a negative Coeliac antibody test. A person with IgA deficiency will not produce the normal Coeliac antibodies.
If you suspect that you have a functional B12 deficiency (high blood levels, but not enough getting into the cells) then a methylmalonic acid (MMA) test will show this. gponline.com/management-per...
MMA is a chemical that gets used up in one of the processes that B12 is involved in. If there's not enough B12 in the cells then the MMA doesn't get used up and the levels in the blood start to rise. Many people consider it the best available test for B12 deficiency.
You mention that most of your test results are in range - however it is WHERE they are in the range that is important. Also I am suspecting if they tested your thyroid that they only tested the TSH - which is a Pituitary hormone and tells you very little about your Thyroid activity. These are the tests you need - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg. The last two being Thyroid anti-bodies. Docs seem to understand very little about diagnosing and treating the thyroid and are bound by Guidelines.
There is Private Testing available through Thyroid UK - with a small discount.
There are also finger prick tests available in the home ....
The range for the TSH is often 0.5 - 5.0 - of course labs vary ! So the GP will say all is well when you are within that range. Healthy people have a TSH of 2 or less.
Thank you so much to everyone who replied, and sorry I haven't thanked you earlier. I've had a couple of months where I've basically just been working and sleeping.
I have ordered some tests on blue horizon, including active b12, thyroid and H pylori. I'll let you know what the results are when I them.
In the meantime, a few people asked about where I was in my 'normal range' results, so here's my full list of blood test results.
Plasma C reactive protein - 4mg/L<
Serum ALT level 14 iu/L
Total alkaline phosphatase 67iu/L
Serum Bilirubin level 28 umol/L
Serum albumin 47 g/L
Total white cell count 6.7 10*9/L
Red blood cell count 4.74 10*12/L
Haemoglobin estimation 155g/L
Haematocrit 0.43 ratio
Mean corpuscular volume 91.4fL
Red blood cell distribution width 12.4
Mean corpusc. haemoglobin 32.7
MCHC 358g/L
Platelet count 133 10*9/L
Hypochromia % 0.7%
Erythrocyte sedimentation rate 5 mm/h
Neutrophil count 4 10*9/L
Lymphocyte count 2 10*9/L
Monocyte count 0.4 10*9/L
Eosinophil count 0.1 10*9/L
Basophil chubby 0.1 10*9/L
Serum TSH level 3.5 mu/L
Blood glucose level 4.8 mmol/L
Serum ferritin 36 ug/L
Serum total 25-OH vit D level 40nmol/L
Serum calcium 2.28 mmol/L
Calcium adjusted level 2.1 mmol/L
Serum inorganic phosphate 0.99 mmol/L
Serum albumin 49 g/L
Total alkaline phosphatase 70iu/L
Serum cholesterol 4.2 mmol/L
Serum HDL cholesterol 1.73 mmol/L
Serum cholesterol/HDL ratio 2.4
Se non HDL cholesterol level 2.5mmol/L
Serum sodium 140 mmol/L
Serum potassium 4.2 mmol/L
Serum creatinine 51 umol/L
Serum urea level 3.2 mmol/L
GFR calculated abbreviated MDRD 60 mL/min
Serum folate 10.5 ug/L
Plasma vitamin B12 level 507 ng/L
I've also been taking vitamin D3 3,200 IU capsules for the last couple of months, and had another blood test. My vitamin D is up to 62 mnol/L now.
If anyone has any comments about my test results, I'd really appreciate hearing them.
In the meantime, thank you so much everyone again for your advice and encouraging words. I will let you know what my private blood test results are when I get them.
Do you have the reference ranges for your results. Different areas of the UK use different reference ranges. Its difficult to comment without knowing the reference range.
Mean corpusc. haemoglobin(MCH) 32.7
The MCH result appears to be at the top of normal range...typical ranges for MCH have 32 as top value although your area may have a range with a different top value. High MCH and high MCV can indicate the possibility of macrocytosis (enlarged red blood cells).
Good that you have ordered tests through BH. I would post your results in a new post so they do not get missed. Maybe put the thyroid results on Thyroid UK - the forum here on HU.
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