GPs and consultants dismissing abnormal results

[BlackInk]

I'm not sure what I want from this post really, mostly a rant.

I've had a long and tedious list of increasing/worsening symptoms for a few years. GPs seem convinced it's all in my head, but every time a result or examination identifies something they just totally dismiss it - saying 'oh that wouldn't be causing your symptoms' or 'it's only a little bit low' etc. I just can't understand why they have the normal ranges then ignore them, especially in a patient with symptoms.

I won't bore you with my symptoms but I'm 47 and have had the following diagnoses / abnormal results:

Positive ANA (followed by a negative one a few years later)
Low B12 (now having B12 injections)
Low ferritin (on and off for years)
Low haematocrits (on and off for years)
Low platelets (on and off for years, very low in pregnancy)
Early menopause (age 43)
Infertility/miscarriages
Low morning cortisol (SST normal)
Arthritis (confirmed in fingers, suspected in feet, back, shoulders, jaw...)
Low C4 (and borderline low C3)
Hiatus hernia

I feel sure that there must be a link between all my problems, but GPs / consultants don't seem to want to look at the bigger picture.

I recently paid £250 to see a private rheumatologist. She acknowledged arthritis in my hands and looked briefly at my skin, ordered some blood tests. The C4 came back low but she didn't even tell me – reported as normal. When I saw the results and queried it she dismissed it totally. I couldn't really afford the private appointment – it was a one-off. I can't pay for any more.

I suppose I wondered whether anyone here might have an idea what could be going on and how I might go about seeking help. I'm done with feeling like death all the time, scraping myself along but not really living.

BI

[Inthemane]

This sounds really tough. It's hard when you're experiencing symptoms, the results show that something isn't adding up and they are dismissed.

Have you had a short synacthen test to check for Addison's? It's most common in women aged 30-50. I noticed you had an early menopause and one of the signs of Addisons is loss of periods:
www.yourhormones.info/endocrine-conditions/addisons-disease/

Are you taking HRT?

Also, how about lupus?

Just throwing some ideas in there in case you haven't been tested for these or discussed with your GP yet. I think the important thing is that if you are continuing to experience debilitating symptoms, you keep returning to the GP. Be the squeaky wheel that gets the oil - ask to be referred or go to a different GP if possible to discuss.

Hope this helps.

[BlackInk]

Thank you @Inthemane

Yes, I had a SST and my cortisol levels rose satisfactorily. My base cortisol was low both times it was tested though. I queried whether this could mean that I might have a problem with my pituitary gland rather than my adrenal glands (Addison's) and was told that the good SST result ruled this out... from what I've read I disagree but...

I do wonder about Lupus. The positive ANA and low C4 both point to this, and I have several of the key symptoms, but neither GP or rheumatologist are willing to consider this.

My GP is sick of me and I'm worried that if I change GPs they will send my notes with a big fat "this woman is a hypochondriac" note!

[Symbion]

Have you been tested for coeliac disease?

[BlackInk]

I have @Symbion, I'm pretty sure they did a biopsy when I had an endoscopy and have definitely had a blood test for it.

I've had loads of tests. This is what's so frustrating - they run tests and then ignore anything that comes back abnormal. It's making me feel like I'm going mad!

[JamesAnderson]

Do you know the actual numbers for the SST results and what time was the test done?

Did they test ACTH at the same time? This should go on ice immediately and be rushed to the lab.


Were you taking any oestrogen based hormones within 6 weeks of the test, or any other steroids for any other condition? Even inhaled steroids can raise levels in the blood.
Oestrogen can artificially raise your cortisol levels.

What is your blood pressure and blood sugar like? Both will be low with primary adrenal insufficiency, blood pressure is normally fine with secondary adrenal insufficiency.

If your ACTH was low it could point to a problem with your pituitary. An insulin tolerance test is needed to diagnose secondary adrenal insufficiency.

I can't help with any of the other issues I'm afraid

[Nat6999]

Are you taking cofactors with your B12 injections (folic Acid, magnesium, B Complex) ? How often are you having your injections? It could be that you are still low on B12 & need more frequent injections, the level that Gp's consider to need B12 replacement is very low, you can be ill with levels of 250+ but unless your bloods show a level less than 150 you often can't get treatment & even if you do it is only 6 loading injections & then every 12 weeks afterwards. Look at one of the B12 groups on Facebook, put your results on there & someone will advise if there is anything that looks like it needs treatment.

[Endofthelinefinally]

Are you taking adequate vitamin d and iron supplements? I have autoimmune disease and severe osteoporosis. I have been on some really awful drugs and been very unwell. I feel better when I get my vit d levels up. I am so sorry you are struggling to be heard. It is such a lottery.