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Autoimmune condition? (Warning long!)

(52 Posts)
Sunmoonearth Sat 12-Oct-19 21:06:13

Already posted this in autoimmune section but is very quiet there.
I'm really hoping someone can help.

Had hip and low back pain for 10 years. Been back and forth to GP and mostly ignored.
Finally referred to an orthopaedic consultant in May. After MRI diagnosed acute sacroilitis.
Sent for physio and pain management consultant. First pain person was hopeless.
Saw someone else who repeated MRI (same again but saw wear and tear on hips as well). And he referred me to a consultant rheumatologist. Blood test was ANA positive. Also positive for Anti Thyroid Peroxidase (261) and anti thyroglobulin (940).
Normal thyroid function maintained apparently.
He didn't really say anything to me during the appointment but wanted another MRI of a slightly different area (the 4th MRI since June!!).
I'm really fed up. No one has helped me with my pain at all. No one has given me any tangible advice. No one has prescribed anything to help me at all.
The physio is excruciatingly painful and she isn't helping me at all. It's so painful afterwards I need to take lots of codeine based painkiller afterwards and I'm usually in tears.
Oh and I have had a DEXA as well but no signs of osteoporosis at all.
Anyone help with what all of this means? Anyone help me with a best guess?
I can't understand why 6 months of investigations and endless xrays, MRIs and blood test and none of the consultants are telling me anything.
This is all private via insurance. They've all promised to write to me but never do.
All they do is ask me back for more appointments and tests.
Please help me find some sort of a solution to all of this.
Tia. 

OP’s posts: |
cheesecadet Sun 13-Oct-19 14:31:22

@sunmoonearth Hi, has the rheumatologist mentioned possible Ankylosing Spondylitis? I have this with sacroiliitis, which is the hallmark of this condition. Mine was diagnosed through MRI. Maybe he's waiting to find more evidence on your next MRI to diagnose?

Bettertobehealthy Sun 13-Oct-19 16:26:47

Hi sunmoon ,

here is something that may not have been considered . I wonder what your Vitamin D level is. It is well known that low vitamin D can cause various bone and joint pains, particularly lower back, groin etc.

IF you have not had that tested , then it might be a really good idea. There is a growing body of evidence that Vit D deficiency / insufficiency is associated with many bodily dysfunctions. Nowadays, many in the Vitamin D research community consider that blood levels below 100 nmol/L are not optimal. Vit D has anti -inflammatory effects, it is an immune system modulator, it may well help your symptoms , if you increase your level to 100 or somewhat above , by supplementation.

You may be interested in a couple of threads , where people are discussing that very effect , quite a number with similar problems to you.
Here
www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect

And here

www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed

You might find these interesting.

I have posted quite a bit on this subject ( Vit D ) , here on mumsnet,

Hope that is potentially helpful,
IF you need any more information , just get back to me.

BTBH
.

Sunmoonearth Sun 13-Oct-19 18:52:44

Cheese. AS was mentioned in passing but that was it. The mri of my lumbar spine was absolutely fine! Which I think rules it out given the SI and hip issues have been going on for such a long time.

Better. I did have vit d tested along with B12 and magnesium. Only B12 was deficient (strange because I eat meat).

Vit D has been tested a few years ago too and was normal at that point as well.

Interesting to know vitamin deficiency can cause issues.

Would the B12 be part of it?

OP’s posts: |
cheesecadet Sun 13-Oct-19 19:07:58

What are they scanning next?
What other symptoms do you have?

Sunmoonearth Sun 13-Oct-19 20:10:53

Cheese.

Only hip pain and pain in sacroiliac area.

Consultant wanted scan of upper back where I have no issues at all.

It smacks of trying to stretch fees out.

Am going to email tomorrow and ask for results to be forwarded to me and I'll speak to insurance about seeing someone else.

OP’s posts: |
Onceuponatimethen Sun 13-Oct-19 20:13:29

Is your calcium normal? ’

Sunmoonearth Sun 13-Oct-19 20:55:15

Yes. Completely normal. Everything is completely normal apart from:
B12, thyroid antibodies, ANA positivity.
High blood pressure and obviously hip and sacroiliac pain.

OP’s posts: |
BlackInk Mon 14-Oct-19 10:07:35

Are you being treated for the low B12 @Sunmoonearth?

If you were eating a diet that included meat / fish / eggs or dairy in reasonable regular amounts and your B12 was below range it suggests that you are unable to absorb it through diet or oral supplements.

B12 deficiency can cause a huge list of symptoms, including aches and pains. Autoimmune B12 deficiency (pernicious anaemia) could be the reason for the positive ANA. Pernicious amaemia is difficult to test for reliably, but if you have one autoimmune disease the chances of also having others are much higher...

BI

Bettertobehealthy Mon 14-Oct-19 19:25:20

Hi again sunmoon,

Whilst, nobody , so far it seems , can find the root cause of your problems, it may well be that a nutritional supplement of Vitamin D could help you. There are no downsides, only upsides. IF I was in your position , I would very seriously consider just that.

As I indicated above, Vit D , is an immune system modulator, it reduces inappropriate inflammation . deficiency is positively associated with anti-nuclear antibodies, pernicious anaemia is thought to be auto- immune related, you have thyroid antibodies. To my mind , it is worth making a serious effort to maintain a "good" Vitamin D status in an effort to help yourself.

I wonder if you have the result of your Vitamin D test. What blood level ? Over the last ten years there has been a revolution in the thinking about levels we should have. At one time 200 IU was considered our daily requirement.
In those threads posted above , I have tried to explain why we need a lot more. In the UK, you cannot make Vit D , in the skin , from sunlight from mid-Oct to mid-April. Many of us are deficient or insufficient. Are you by any chance vegetarian ? there is almost none in those food sources. What is often considered "normal" , is not necessarily so. As I have mentioned , the older view , that a level 50 is good , is not correct. It is true that it is common ,
but it is not good at all. The normal range extends from 50 to 200 , you were most likely very close to the bottom.

Try to get above 100 nmol/L , keep your blood level there by daily supplementation , ( NOT longer intervals ). IF , the problem is low vit D then you should see some reduction in symptoms in 3 to 6 months.

As I explained in those threads, IF your level was say 50 , then by adding 3000 IU per day supplementation , you should bring your level up by around 75, into to the 120 + range.

IF you vit D level was measured at , at the mid or end of summer , when it would have been at maximum , then it is likely that your levels would be dropping dramatically over winter. DO you use factor 15 (or above ) suncreams ? They prevent Vit D manufacture in the skin, by absorbing UVB sunlight.

IF you are at all worried about taking a supplement , then after a couple of months , you could be cautious , and measure your blood calcium level. IF it is normal, which it should very well be overwhelmingly likely, then you have nothing to worry about.

Give those threads above a good read through , have a look at the lecture I posted by Prof. Holick , in the first thread, to get a good idea about Vit D. The other post in the second thread , by Prof. Veith , should help your understanding. They are both world renowned experts in VitD physiology.

Best of luck with everything. If you want any more information , just get back to me.

BTBH.
.

Lemonlady22 Mon 14-Oct-19 20:30:11

I feel your pain....ive been having problems since April and ive seen so many Drs who seem to pass the buck onto some other doctor and repeat. Fed up tbh. Hope you get a diagnosis and help.

30to50FeralHogs Mon 14-Oct-19 20:35:53

Normal thyroid function maintained apparently

Did you get actual numbers and reference ranges for thyroid tests? One of my worst symptoms with under active thyroid was lower back pain so bad I couldn’t walk 100 yards without stopping for a break.

I’d be interested to hear if your ‘normal’ levels are actually a bit off, albeit within the very wide range declared normal.

Sunmoonearth Tue 15-Oct-19 00:13:35

30to50. Yes. The numbers were 1.47 and 17.6.
I did google and these are normal (tsh and t4).

OP’s posts: |
Sunmoonearth Tue 15-Oct-19 00:18:42

Blackink.
No. No treatment. GP said I had to take vit b12 tablet. He said if he gave me injections I would have to keep having them and there might be no need if tablets helped.

I don't understand the vit b12 issue. I eat meat and plenty of it. I eat lots of cheese and dairy too.

OP’s posts: |
justilou1 Tue 15-Oct-19 00:24:10

Have you got a history of being a bit of a klutz? Could you possibly have one of the many post-2017 variations of Ehlers-Danlos Syndrome. (Probably hEDS)

justilou1 Tue 15-Oct-19 00:29:13

Doesn’t ANA positive blood test indicate Lupus?

Sunmoonearth Tue 15-Oct-19 01:25:37

Just. Occasionally clumsy but not especially so. And not particularly flexible so I doubt I'm hyper mobile.

According to rheumatologist a positive ANA doesn't necessarily mean lupus. He didn't think this was the case at all.

I did go back to useless GP today. A very disappointing experience as ever. He thinks that I should stop having investigations and that thyroid antibodies with normal thyroid function means there is nothing there and that the ANA positive test is meaningless.
Ie because this interpretation means he doesn't have to do anything and can keep fobbing me off.

He wouldn't even take the printout of the blood test from the consultant. He gave it back to me. Presumably because then there is nothing in my notes which means he actually has to do something.

I'm so tired. I've not had a single sodding day without painkillers since 2012. I don't actually know what it is like not to be in pain any more.
Things are so bad that I'm considering ending it. I'm considering getting in the car and driving somewhere quiet to end it all.

OP’s posts: |
justilou1 Tue 15-Oct-19 04:28:38

I would ask for a referral to a physician.

Sunmoonearth Tue 15-Oct-19 12:49:22

Update. Phoned Gp for result of second B12 blood test. Supplements are working apparently and levels are up to 424 from 106 in under 3 weeks. Seems a bit miraculous. But there we are.

No news of anything else. So frustrated and in pain. Couldn't go to work today couldn't even manage the school run. DH did it. He can't do school collection. God knows how I'm going to manage that.

OP’s posts: |
justilou1 Tue 15-Oct-19 13:03:38

Physician

Sunmoonearth Tue 15-Oct-19 13:51:47

Surely that's exactly the same as a GP? Or at least that's what google tells me.

OP’s posts: |
justilou1 Tue 15-Oct-19 21:37:26

No... a physician is a specialist with much more training who can order more tests and look deeper.

justilou1 Tue 15-Oct-19 21:40:26

Sorry - in UK ask for Consultant Physician. Just as a paediatrician is a specialist for children, a consultant physician is a specialist for adults.

Sunmoonearth Tue 15-Oct-19 21:43:16

Aha. I'll get onto that. Sounds like a good idea.

Thanks 👍

OP’s posts: |
IYCBABeKind Tue 15-Oct-19 22:13:09

This may sound a little crazy considering what you've been through but if I was you I'd start with your feet!

I have had so many orthopaedic assessments for knee/hip and sacroiliac pain. I've had chiropractic appointments and adjustments, I've had knee braces and physio till it's coming out my ears and not one thing has made the blindest bit difference! But on my most recent trip to another chiropractor he suggested a more supportive pair of sturdy shoes. I bought a good quality pair of walking shoes with 'super feet' insoles and within a couple of hours I could feel the difference already. Pain free for the first time in years. I have worn those shoes and insoles every day for the last year and sadly the shoes have worn out (that's a whole other story) due to the fact they've been back to the shop I've not had them for over a week now and I'm dying, hips/back knees killing already 😢 just wanted to share my experience with you because I was so stunned the effect those shoes had it may be worth looking at?? Hope you get to the bottom of your pain x

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