Is sea buckthorn oil capsules good for sjogrens syndrome? I had this diagnosis yrs ago and I know there is a correlation between sjogrens and hashimotos which I also have.
Tried lots of eye lubricants (Prescriotion and OTC ) and oral sprays over the years but nothing has helped.
Think I may have heard of the sea buckthorn oil on this forum but not sure and wanted to see if others have tried it.
Many thanks
I’ve tried sea buckthorn as both a powder and as a capsule (and black seed oil) and unfortunately neither supplement made any difference in dry eye symptoms (for TED). I’d definitely do a trial though, as both work for some! I swear by Hyloforte drops and use these several times a day for dry eye. Combination treatment (adding a small amount of T3 to my Levo) massively improved my TED symptoms ( eg eye swelling) & was actually recommended by my TED specialist ophthalmologist.
I’ve had good health effects from turmeric (with ginger & black pepper) for inflammation and now take this daily. I’m currently trialling boswalia (Indian frankincense) for an athritis flare, but it’s too soon to say if that’s helping in my case.
Thanks for your reply.I will give the buckthorn a try. Suppose it's a case of trial and error. Is hyloforte drops POM or can I buy it OTC? Its probably one of the few eye drops I haven't tried?
I found the capsules of SB easier than the powder, as I really hated the taste of the latter and so couldn’t sprinkle it on my porridge or add to a smoothie as recommended.
Sorry just realised when I googled hyloforte eye drops that I already had tried them years ago on advice of optician.Recognised the packaging although I think it may have been green instead of red then
Hi Hollybushroad,
I also have SS and Hashimotos, along with several other A.I. diseases.
I was recommended to take Seabuckthorn oil for joint pain by the Sjogrens specialist nurse in Rheumatology. I have been taking it for 8 months and haven't noticed a significant difference. Tried Hydroxy but it didn't suit me.
For eyes I take a concoction of drops, all prescribed via GP on advice from consultant at eye hospital. They are; Viscotears; Celluvisc; Ikervis; Clinitas; Hylonight and Dexamethasone steroids when my eyes get really inflamed. Your GP should be referring you to your local eye dept as GPs cannot prescribe some of the above and SS sufferers need to be checked more regularly.
If you need any more info, just ask
ATVMWF
Hi thank you for your reply. That's quite a cocktail of eye drops you take. I would never remember all that daily routine 😆I have been taking the sea buckthorn for couple of weeks now so suppose early days but don't have any great expectations tbh.
Tried so many things over the years with little success.
I've also started getting joint and muscle pain over past 6 months...hard to know what autoimmune disease is causing what symptoms. And recently to complicate things further I'm being checked for pernicious anaemia so it's all a minefield really and quite overwhelming.
Do you suffer from night sweats with the SS?
I ve had night sweats for over 30 yrs and really don't know if it's the sjogrens causing it but then again I have alot of other unexplained symptoms too.
Thank you for your help
Hi Hollybushroad,The eye drops routine can be tiresome but you soon get a routine worked out and worth it not to have constantly sore, gritty eyes. Well at least some of the time.....
Yes, I get horrific night sweats! Never been able to discern a pattern, they come and go but not cyclical. Can have them 25 nights on the trot, then none for 5 nights, then have them for 3 nights...all very strange and draining. Absolutely soaked and can have multiples in one night. Mentioned to my rheumatologist who wasn't concerned...OK for him , he doesn't suffer them....grrr! Someone told me that you get them when SS is in an active phase. Not sure about that as just been in a flare myself and haven't had a night sweat.
With seabuckthorn I think you have to take quite a high dose for months to notice any difference. I take 8800 mg a day.
I also take vit d3 and k2 and Methylfolate L and once a week vit B12. I do a private blood test twice a year through Medichecks as NHS does not test for T3, which I also source privately for thyroid issues.
I would always advise anyone to test bloods before taking any supplements/medications. Better safe than sorry.
Worth looking at the P.A. site as the people over there are very knowledgeable and I am sure will assist if your blood work indicates you may have it.
Let me know how you get on.
ATVMWF
Thank you for taking time to reply. Yes you seem to have a similar pattern (or lack of) to me re nightsweats...come and go for no obvious reason but are there most nights. Had bloods done last week had low serum b12 and folate but "within range" so lab didn't test for intrinsic factor antibodies despite GP request. My mum had PA so bit concerned. I'm going to do medichecks antibodies test ad I just find it too stressful trying to deal with my GP at the mo.
Yes like yourself I wud never randomly take supplements unless I knew my blood work first.
Feel pretty rotten at the mo but holding off with b12/supplement until I know what I'm dealing with. All this autoimmune stuff is so frustrating as symptoms of each condition overlap so don't know what's causing what.
When u say u take b12 once a week do u mean via injection?
How do u find T3 as opposed to Levo or do u take combination?
Hi,
My mum has PA as well, along with parathyroid issues. She had the injections of B12 every 10 weeks. I take Vit B orally once a week.
Taking T3 was a game changer for me. I take T4/T3 combo (75mcg/20mcg) daily. Lots of issues are better than before, at least I can finction now but SS and Thyroid often have similar problems so it is hard to work out what is getting worse/better and which disease is causing it. IE: joint pain, fatigue, sleep issues etc. The dry mouth etc is most probably down to SS.
Just because doctor says folate and B12 'in range' doesn't mean it is 'optimal'. I would encourage you to have a private blood test done. My understanding is that the folic acid GPs prescribe is useless and you need the 'active' type (Methyfolate) for your body to absorb correctly. Same with B12 the ranges may have you OK at the bottom when you need to be in top quadrant. The admins on the PA and Thyroid site here are really good and will give you advice on your blood results and tell you how best to address any deficiencies.
ATVMWF
Sorry just realised I forgot to clock reply button and sent a reply to myself instead of you. Not sure how to resend it to you.
Thanks againYes been on PA forum and I know myself anyway my b12 and folate are at bottom end so I know I need to supplement but holding off til I get IFAB result (although I know it doesn't pick up 100% of cases)
If I started supplementing now it wud skew further test results in case I actually do need b12 injections so I'm very frustrated that NHS lab did not do IFAB test thus me going for medichecks test and hope GP acknowledges it should it be positive .
Yes this Thyroid forum has been great ....pity GPS wouldn't sign up to it!!
Bought all the supplements admins recommended but just holding of with the B12/folate til I get clarification re possible diagnosis of PA.
Glad to hear T3 working well for you. I have a first private endo appt in a couple of weeks and hoping he will consider add on T3 as I seem to have conversion problems. He gets good reviews and apparently treats symptoms rather than labs which is encouraging but will see how it goes.
Thanks again for your help
No problem. Happy to help with advice. If it saves you years of misery, all the better.Take care
ATVMWF
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