Question about being in two communities on H.U. and if it limits the amount of posts you can see?

Hi does anyone know if being in another Health Unlocked Community means that it limits/selects what you see if there are a lot of posts? The other community is far, far busier than this one and I now find three or four NRAS/RA/related messages and about twenty from the other. I was wondering if it had gone a bit quiet on the Arthritis side of things (would be lovely if we were all feeling good and had no problems/issues!) Thank you, if anyone knows how this works if you are in two separate areas. I was trying to get advice from the thyroid side of things but after a couple of weeks no luck. NK x

23 Replies

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  • I'm on 2 communities and haven't noticed any limits. Clemmie

  • And Im on the Thyroid one too! Clemmie

  • Thank you, Clemmie. ;-)

  • I have to click on the My Communities button and then I just get what I want to look at. I think it seems as though there's less NRAS because of the other posts.

  • Yes Cathie I think so .. we aren't doing so many here at the mo! I just wondered if I was only seeing a selection and the NRAS ones were not all showing. Thank you. Hope you are alright. Let us know how you are. xx

  • Hi, I'm waiting for my second dose of cimzia. It worked quite well for about ten days but I've been a bit tearful and inflamed today. Next shot is Saturday morning xx

  • Sorry to hear a painful day today. Hope your Cimzia continues to work well. Rituximab was a slow worker for me but seems to be having good results. Hope after a few more it is at its optimum for you or well on its way to being so. xx

  • Thankyou. Just one more day before dose two!

  • Hang in there ;-) x

  • Hoping for a pain free weekend for you Cathie .. and some sun! xx

  • I belong to 3 communities. It only affects the newsfeed I think, the busier community will show more posts. I usually go to each community individually to check on any interesting posts I might otherwise have missed.

  • Ah ... didn't know I could do that so thank you Poems. ;-)

  • Hi,

    Same for me three communities and I have the option to view all or select one. The main advantage is to learn from other's comments.

  • True but there is so much in particular from one forum/group which was too much to read I confess, and there was so little from NRAS it made me question if something had gone wrong! Now I know not. The new bell icon and being able to access the ones most pertinent happened after I posted my question. That is a great idea and we can see our own replies more easily. ;-)

  • I'm on four communities and find that the thyroid one dominates mine daily HU alert - presumably because so many more people are affected by thyroid disease than they are by RA, Lupus or Raynaud's?

    I think notifications and PMs just flag up together and you click on the box with lines in the top bar to read or reply.

    Like Poems I usually just look at new posts on each of my communities on a daily basis.

  • Hi Twitchy ... Thank you. It would seem so many people have thyroid issues including ourselves and many other fellow NRAS friends. So many issues people are trying to fathom including myself. How are you doing this week? x

  • Hi NK - still fathoming like yourself I think. I know that I'm classed as having RA as my primary disease with other symptoms as secondary such as Sjogrens and Raynauds - but I'm not sure why RA isn't also classed as secondary if, like me you've had autoimmune Thyroid disease first? Mine certainly feels as though it is secondary at present even though I've been off all drugs for 4 months now. If I was feeling well this would be great of course!

    My Hypothyroidism started about 12 years ago and was only borderline to begin with and then rapidly accelerated. I have never noticed any improvement or decline in my symptoms with Levothyroxine -although I did notice a marked increase in stiffness and lethargy once when I accidentally underdosed for about two months! I am often amazed at how little I knew and still know about the thyroid compared to other forms of autoimmunity. People do seem hugely emersed in research and knowledge about the thyroid and much else besides on that community. There is also so much cynicism about doctors on there!

    But I'm also amazed by how many symptoms and how much ill health people with thyroid disease seem to suffer. It makes me wonder if I may have had thyroid disease even as a kid because I have never had good health really. Ah well I'll never know now I guess! X

  • Hi Twitchy, the thyroid is very confusing indeed. My blood tests for hyper are perfect apparently and have been for a few years. I don't have figures to hand. I got my Graves very severely in 2006 when I lost so much weight I was under 6 stone. It took a year to get back on track and the right dose of Carbimazole. 15mgs daily. The Endo was thinking of stopping it a couple of years ago and see if I went in remission as the bloods were so very good and no symptoms then my RA went out of control so he did not want to give me another problem potentially. The thyroid controls so much I do think people have problems with it going out of synch but don't realise unless something more apparent. I noticed on a Christmas photo with a lower neckline that my neck was a bit puffy. Then my eyes which are big anyhow, had a more protruding look as a GP told me he thought it was my thyroid and he was correct. Once on Carbimazole they went back to normal quite soon. The year of being under 6 stone was horrid. I had to eat so much to stay at that meagre weight. They say you feed an underactive thyroid and they are right! People thought all sorts of nonsense about me .. the most crazy one that I was a heroin addict! The comments and insults for being so underweight were awful. I used to wear a big coat and hide in a hat pulled down and my specs.

    I recall one large lady with her cup of tea looking at me in Starbucks as I had a huge tuna baguette, a massive latte and a slab of carrot cake. I could see her thinking ... greedy moo!! .. but I needed it as felt weak/hungry all the time. Now I have the other problem of ankles not letting me move so much, so I cut out bread and limit goodies so I don't pile it on. Either way ... under or over it is a problem. Just wish you could get free prescriptions for underactive thyroid but you can't. So do you think an under active thyroid makes the joints stiff? My RA started in 1995 so ten years before the Graves/over active thyroid. Did your Endrocrinologist suggest coming off your thyroid med? Or did you propose this. Sorry if you have told me Twitchy, my head a bit fuzzy tonight recovering from a cold type virus. I hope you soon feel right and it would be lovely not to take meds. That is one advantage of an infusion which is probably going to be every 9 months for me but it is till a very grey area till I discover my requirement. I feel I will need another soon but hard to tell. I know many gave advice here (thank you so much ;-) ) but you have to wait and see what your pattern is. XX

  • Hi again NK. I don't have an endo - hypothyroidism is generally just dealt with by gp I think. My friend went from Hypo to Hyper and lost masses of weight too. I remember worrying that she might have cancer because it was so dramatic and came with lots of chesty coughing. Horrible. I'm the other extreme and really struggle to lose weight despite being gluten free and avoiding all refined sugars, saturated fats like the plague and restricting portion sizes to minimal.

    My thyroid bloods are also within normal range just about, but my TSH is low at 0.01 and my FT4 is at the low end of normal too. TUK people tell me I need NTD or a higher dose of Levothyroxine but my GP will have none of it! I don't know who is right but have to put my trust in my GP over non medically trained people even though they are the admin people so they may well be right. I did read a small BMA book by Dr Toft about the thyroid and he did say that results like mine suggested I wasn't being adequately medicated but what can I do if my gps are happy with my thyroid bloods and always ready to blame my symptoms on RA and wider autoummunity?

    In Scotland prescriptions are free but I assumed that they would also be free to anyone with thyroid disease in England because they always used to be? If I didn't take thyroxine I would slowly collapse and die I was told by the gp who diagnosed me. It isn't quite the same as RA meds because once you start on thyroxine your body stops producing this hormone naturally so you take it for life. Recently the peripheral neuropathy, dizziness, heart palpitations and stomach upsets have been so bad that I've even considered stopping taking Levothyroxine to see what might happen and force my GP's to look at my thyroid as a possible cause but that would be a bit stupid I realise! X

  • Hello

    I am on six sites and I get my news feeds for all of them, also we get an alarm next to the bell when someone answers our reply.

    Generally you should get input on a daily basis and if you want to contact a person you can do that on an internal page by using their blog name. The reply will show again next to your site name. Many chat on this service as it is not shown to other members, give all a try

    BOB

  • Thanks Bob ... I just started to get the alarm bell on my header yesterday. Much better as I was trawling through loads of things before.

  • Thank you again, Bob. ;-)

  • Hello

    I am on six sites and I get my news feeds for all of them, also we get an alarm next to the bell when someone answers our reply.

    Generally you should get input on a daily basis and if you want to contact a person you can do that on an internal page by using their blog name. The reply will show again next to your site name. Many chat on this service as it is not shown to other members, give all a try

    BOB

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