I had a shock at my dentists, of all places, this week. After a routine check up and clean,my dentist did some x-Rays and was alarmed to find I have a sudden large decrease in bone density. Now, besides worrying I may ultimately lose my teeth and end up looking like a Gummy Bear, I''m scared of what might be causing this. He said he feels my body is overreacting to the plaque I produce and thinks it might be caused by some sort of autoimmune issue. He suggested I get checked for Sjogrens Syndrome. So I got my doctor to do blood tests for that yesterday.
I also have an appointment with the optician today, as I'm constantly rubbing my eyes lately, as they feel irritated.
I'm also revisiting an osteopath as I have increasing burning sensation/cramp/pins and needles in my lower legs and feet which he thinks is a nerve problem and pain in my upper arms that restricts movement behind me or pain on stretching for something. He says this a rotator cuff problem.
I'm under a good nutritionist now who has me eating super healthy and is supplementing with 2,000 units of Vit D drops a day but is working on healing my gut first before supplemetng with other things,in case my body is not capable of absorbing supplements properly at the mo'.
As some of you may remember I already have Type 1 Diabetes, Hashimoto's Disease, Alopecia Areata , Vitilgo and POTS. Mentally, I just don't think I can face taking on board yet another autoimmune disease like Sjogren's. Is there anyone in a similar position to me that recognises my latest symptoms as Sjogren's?
The sudden decrease in bone density really scares me. I meant to ask my G.P. if I should have a full body bone scan to see if the problem is elsewhere in my body but forgot. I asked months back for a calcium test but was refused at the time. I'm kicking myself I didn't ask again about that yesterday. I feel sure he'd agree to one now and I'm surprised he didn't instantly suggest it., in view of there being a bone problem.
I'm going on holiday next week and I'm not feeling in holiday mood. Straight after I come back,I have to have another biopsy on the nodules on my thyroid found last year and now with this bone worry and the Sjogren's question mark hanging over me, I feel so worried.
I know there are always folks worse off than oneself and I do TRY and help myself and TRY and stay positive but it's hard when just as I get my head round one thing, something else kicks in.
Apologies for the lengthy email.
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chocoholic17
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Do you know your actual vit D level? 2,000 iu isn't that much if you are low. Can you get your legs out into this sun today at lunchtime for ten minutes or so? And don't shower afterwards.
I agree with Clutter - tingling and numbness, eye problems, etc. are among many neurological symptoms of B12 deficiency/PA, often interlinked with other autoimmune and absorption issues, and should be investigated and treated without delay :
Another helpful site with lots of info and an excellent film:
Thank you for your replies. I saw my optician today and she examined my eyes and said my eyes are REALLY, REALLY dry and she too is convinced I have Sjögren's syndrom, so is writing to my G.P with her findings and asked him to prescribe drops and ointment..
I'm gutted to get this news. Why on earth is my body turning in on itself like this?!!!
I've just looked at my last result for b12 and it was342 ng/L (180.00-800) so it was within range and that was done in February. Could it have gone down too much in since then?
My Ferritin was 126 (25-300) and Folate 6.1 (3.00-20.00 ug/L)
Chocoholic, neuropathy can be experienced with B12 <500 and 1,000 is the optimal level. Supplement 5,000mcg methylcobalamin sublingual lozenges, spray or patches for 6-8 weeks to boost levels and then maintain at 1,000mcg day. Take a B Complex to keep the other B vitamins balanced and boost folate. Ferritin is good.
chocoholic,
Sorry to hear you are having such a hard time.
Sjogrens usually presents with dry eyes and mouth but can affect other moisture producing glands. It sometimes accompanies Hashimotos as people with these types of auto immune disease usually get more than one.
I have never heard of it decreasing bone density. Could the problem with your teeth be associatated to perhaps long term undiagnosed hypothyroidism? I have an oesteopenic spine and Dr P said it was most probably caused by years and years of malabsorbtion caused through low stomach acid from lack of thyroid hormone. Remember a lot of Hashimoto people suffer vitamin deficiencies when first diagnosed.
Sjogrens is one of those diseases (like Celiac) where even if you test negative, you can still have it, just in a lesser degree. Milder forms are easily managed usually just with eye drops.
Flower, I am awaiting results, through my nutritionist, for a thorough stool test, that includes parasitic investigation, so I think what you suggest may show up in those results, if that is a problem. Thanks for your advice.
That is good. I too am waiting for results for a thorough stool test. Malabsorbtion can be the root cause of so many issues, no matter how healthy we live and eat.
Thanks again folks for your replies. I've now read elsewhere that the rotator cuff problem I have can be caused by Sjogrens,and if that's true, then I believe it's Sjogrens that has been undiagnosed much longer than I realise,as I had dry eyes and a similar shoulder pain in my left shoulder about eighteen months ago, before the Glandular Fever, Hashimoto's and POTS diagnosis.
I used to be such a fit and healthy person until I got diabetes 12 years ago. I wish I could fathom why my body has decided it doesn't want to play ball now.
I have emailed my endocrinologist and nutritionist for advice. Unfortunately getting an appointment with my G.P. is very hard to achieve and the poor chap often seems to be the only one on duty in the surgery, so they have to resort to 5 minute speed-dating type appointments, Which I understand but when your thinking has slowed, it's easy to feel pressured by time restriction and then forget to ask some things you originally intended asking.
When I come back from holiday, I think I shall go back and ask for the bone scan suggested by Clutter and a calcium test and by then I should be able to discuss supplements etc with my nutritionist, as she's the one I have most faith in out of those treating me.
I have just investigated this correlation between sjorgens and rotator cuff injury (I suffered both shoulders) and you are right.
Due to changes in the synovial fluid, the shoulder joint becomes stiff and inflamed and eventually frozen. I guess this makes sense as sjorgens affects the moisture producing glands.
I had hydrocortisone injected into my left shoulder joint twice during my twentys (am 51 now) and it still works well. My other shoulder can be agony but after reading the detrimental effects that hydrocortisone can have on the body, I have declined any further injections. I have also rejected surgery.
I wonder whether your parathyroids are not doing their job properly. May I suggest you write your GP a short letter with your complaints and leave it with the receptionist. Eventually, he would be able to be prepared for your 5min visit!
I have sjogrens though it never showed in my blood as such. So I was diagnosed on a tear strip and saliva test and an optician said I was photophobic (extreme dislike of bright lies) yes it does affect teeth, however when I had the CT scans etc for enough bone for implants I was fine. They may be able to do crowns or something for you and ask your GP for some good mouth and saliva sprays. Good luck x
Thank you for all your advice folks ,which I really appreciate.
I'm going on holiday in just over a week, so hopefully by the time I get back my Sjogrens antibodies test might be back and I will write down the things I want to ask.
The trouble is with nearly every condition I've had its been a case of ME practically telling a doctor what tests I need and what I suspect is wrong, through research and chat forums such as this and I think I'm in a danger of becoming a 'know it all' in the doctors eyes and I would hate for that to happen.
I've just been for a brief walk in the lovely sunshine, so, mentally I'm feeling a bit better now and I'm sorry for my earlier lengthy email. It's just hard adjusting to each new diagnosis but it's a case of just getting on with it and making sure I do everything to help myself.
Have a nice day everyone and enjoy the sunshine today !
For completeness Sjorgens is also linked with PoTS. I don't know much about Sjorgens personally, but have read that a lip biopsy will pick up what other tests won't. Enjoy your holiday- a good relax and a bit of sun will do you the world of good. Let us know how you get on. Xx
I have really dry eyes and nasal passages but my mouth is not dry. I have been tested for Sjorgens Syndrome but I do not have it. These symptoms can be due to an under active thyroid, which I do have. A few years ago, before I realised that I had a severe B12 deficiency and sub-clinical Hashimotos, I was diagnosed with severe osteopenia. I now know that those with sub-clinical hypothyroidism are more likely to be B12 deficient and that both B12 deficiency and hypothyroidism can contribute to bone loss.
You must now take Vitamin D supplements (D3/Colcalciferol is the best). I suggest that you also take vitamin K2, and of course B12 by injection or sublingual drops/lozenges (for maximum absorption). Other supplements you could add are zinc, magnesium, potassium and selenium. You should also embark upon a program of weight bearing exercise. I joined a gym and for 2 years lifted weights to increase my bone mass. Five years later, I no longer have severe osteopenia, I have mild osteopenia.
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