Hi I have both these conditions so 2 auto immune diseases together ...I have a lot of symptoms but I never know which condition is causing which symptom...does any one else have both and what symptoms do you have? Mine are as follows
Severe fatigue
Bad stomach bloating
Brain fog
Terrible concentration when fatigued
Irritability with fatigue
Joint pain
Dizziness but not very often
I always Sleep like I'm dead but never feel refreshed even after 8 hrs sleep...the Mr can't even wake me up once I'm asleep ...
I work 40 hrs a wk and I'm up at 5 am 5 days a wk and my job includes a lot of walking so I know that doesn't help.but a yr ago I was ok and coped with it well since gettin a lot more symptoms over the last 6 mths to a year life has been very difficult. Luckily I have an amazingly understanding partner bless him. I had my thyroid levels checked 3 mths ago and the Dr said they were normal ( not sure what qualifies as normal tho) .so does any one have both conditions and suffer with the same problems and what help have you been able to get ? Thanks mini
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miniholliday
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I have both deseases and , apart from the bloating have the same symptoms as you. I also have kidney problems which also has identical symptoms. I don't seem to be getting anywhere as the 3 consultants I see always blame one of the other deases.
I have both also. Has your doctor checked your thyroid stimulating hormone(tsh) as when I was first diagnosed 25+ years ago with under active thyroid, I was told initially that my thyroid levels were normal but another gp checked my tsh and that was way too high. Therefore I always make sure they check that one when they do bloods. Hope this helps
I only have PBC that I know of and just taking the urso (and milk thistle that I experimented with later last yr first).
I know I had thyroid blood test back in 2010 and it was normal as was everything else except LFTs and a couple components of the full blood count (FBC) that can occur in PBC (liver diseases).
I know back in May this yr I had a kidney blood test that I'd not heard of before that was on the print-out. Mine was just slightly below normal and when I found out what was it was to check if your kidneys were functioning to the full. I found out that kidney function does start to decrease with age and with PBC mine was considered to be normal.
I have stumbled across something recently that might have been a possible cause of this kidney test. I don't know if I ever had this test in 2010 prior to diagnose of PBC as I only got the print-outs of the FBC and LFTs. I had been using a nasal cream called Naseptin for almost 2yrs due to nose bleeds and then after a few cauterisations (had a small graze inside nose). I recently round out that an ingredient in the cream can actually cause kidney problems, hearing problems and also sense of taste. Maybe this was an explanation, I don't know.
I think with some conditions, you can have a sympton same as what you can encounter with PBC and you might not have got it with just PBC but you then succumb with something else and vice-versa. If that makes any sense? I do think though that the more pills that we start to take the more things start to clash.
I know for certain things, seeing as I'm over 40 now and it seems the age where we all apparently start to show signs of age and wear (not my comment, just what keeps cropping up with over 40s health checks, etc), then little things that we would have previously just ignored even tho' we had some gripe about, it all seems to get overblown somewhat once a doctor bring it to light and then start us worrying. One reason that I tend to prefer to just get on with my lot at the moment and not take much notice of the doctors as I know they can and do get things wrong.
I only have PBC that I know of and just taking the urso (and milk thistle that I experimented with later last yr first).
I know I had thyroid blood test back in 2010 and it was normal as was everything else except LFTs and a couple components of the full blood count (FBC) that can occur in PBC (liver diseases).
I know back in May this yr I had a kidney blood test that I'd not heard of before that was on the print-out. Mine was just slightly below normal and when I found out what was it was to check if your kidneys were functioning to the full. I found out that kidney function does start to decrease with age and with PBC mine was considered to be normal.
I have stumbled across something recently that might have been a possible cause of this kidney test. I don't know if I ever had this test in 2010 prior to diagnose of PBC as I only got the print-outs of the FBC and LFTs. I had been using a nasal cream called Naseptin for almost 2yrs due to nose bleeds and then after a few cauterisations (had a small graze inside nose). I recently round out that an ingredient in the cream can actually cause kidney problems, hearing problems and also sense of taste. Maybe this was an explanation, I don't know.
I think with some conditions, you can have a sympton same as what you can encounter with PBC and you might not have got it with just PBC but you then succumb with something else and vice-versa. If that makes any sense? I do think though that the more pills that we start to take the more things start to clash.
I know for certain things, seeing as I'm over 40 now and it seems the age where we all apparently start to show signs of age and wear (not my comment, just what keeps cropping up with over 40s health checks, etc), then little things that we would have previously just ignored even tho' we had some gripe about, it all seems to get overblown somewhat once a doctor bring it to light and then start us worrying. One reason that I tend to prefer to just get on with my lot at the moment and not take much notice of the doctors as I know they can and do get things wrong.
I have both & all your symptoms. I used to farm & was doing at least 14 hours a day of physical work. Now I can barely sit up in a chair some days! Only on thyroxine & no body seems to understand the pain & fatigue. Depression is a problem too. Hope this is helps & sorry to sound gloomy.
.we do have alot to contend with ladies but we have to keep going even if its hard to function..i feel. for us all ..i'd like to know from the ladies that have similar symptoms with both conditions what treatment have you tried and what has helped?
i have been to dr today and she was lovely ...i have been given anti depressants for my fatigue (recommended by my pbc consultant)..also i have been prescribed peppermint capsules to help with the bloating which she said could be ibs symptoms...oh the joys lol...thankyou all for your replies
I haven't got any other problems at the moment that I know of except for this PBC (and night time itching). I know the treatment for under active thyroid is to take thyroxine and you have bloods to check how you are doing and maybe have the dosage adjusted to get right. So I should imagine that anyone with this and PBC would be on just urso and thyroxine (unless there are other symptons and meds are being taken too).
I agree with the peppermint capsules miniholliday. I haven't bought any for awhile but did buy at the start of taking urso due to getting heartburn as it is good for that. Well not sure if good for that exactly but the warm feeling sort of eradicated that burn sensation and then when the peppermint wore off the heartburn had vanished. I took because I prefer something that is of a more natural compound. Peppermint is pretty good for settling the stomach apparently.
For the bloating, (I suffered that in the first few months of starting on urso (2010)) have you tried just taking wheat out of the equation? Wheat can be known to be a bit of a problem in a lot of people. I have found out that diarrhoea can often be a sign that the system is reacting on wheat. I do not have a wheat intolerance myself but I have a son who does occasionally find too much wheat can make him run to the loo. He had hospital check a few years ago for this problem and antibiotics were to blame, too many courses in short space of time (for psoriasis) so he was advised to cut out wheat for awhile and then gradually introduce a bit and see. Seems that is his problem.
i have had an underactive thyroid since I was 30 I am now 57. 7 years ago my joints started to be painful and the tiredness was awful, 2 years ago I was told I had pbc stage 3. I have now been retired through ill health.I find probiotics good for the bloating, the urso has got liver function tests down, I have to take plenty of rest. I have had times when I felt down due to the changes in my life but I try to look at the good things I have, and the old saying is right there is always someone worse off, although I know this is sometimes hard to see, keep yourself healthy try meditation for positive thinking and listen to your body. Remember you are not alone people here know how you feel, give yourself a hug and here are a load of hugs from me. sue xxxxxxxxxxxxxxx
I have been on thyroid meds for 20 yrs, now pbc abnormal lfts for 4 yrs feel like crap some days others I fly like the wind,just part of pacing yourself..hard I know. Just had bone scans, results are not good lots of thinning on vit D and calcium, Had my bloods done after a couple of mths on urso, meds apparently are not working, so will keep taking until new year to see if bloods improve. I know we are all different but clump us together and we have so much in common, you are not alone this site gives us relief knowing that there are people that understand and offer us advice and support and a ggod laugh some times. best of luck. Who would have thought being an aussie my vit D would be crap.. I live in the sun lol
Hi, Yes, I have them both! Thyroid problem for 30 odd years and taking levothyroxine. Have not had any problems with the thyroid medication except initially when starting. If it goes under, fatigue etc comes along and small weight gain, but other than that it has been stable for most of those years. Had my gallbladder out two years ago and unfortunately, suffered some post op symptoms which, when I think about it, were the PBC symptoms but not diagnosed then. Have since been diagnosed in November 2013 and suddenly all the symptoms make sense! So I think most of your symptoms will be PBC, as the thyroid problem/symptoms can usually be levelled out with medication. PBC ones tend to linger around for sometime after diagnosis, whether on Urso Acid or not. Hope this helps.
PS I have also recently had depression and my therapist (CBT) has given me some good worksheets to work on. One of them is a Weekly Activity sheet, which, you only fill in the next days' activities. By doing this, it structures your days AND you can add in appointments, meetings etc. But it must be a mixture of work rest and play. For instance, I structure when I go to the gym (just to get stamina back, not running marathon!) and then structure in rest for the next day (as I know I will be shattered!). When there are tired days, I listen to a talking book or listen to a relaxation CD when lying on my carpet or in my bed. Doing this feels like you are giving yourself permission to listen to your body and not worry about things you cannot do/should be doing. You can look back on these sheets and see what exhausted you and what worked in keeping you active and busy. There is also a sheet to complete for pain/fatigue as well, so you can look back on sheets you have already completed to find out what causes you more pain/to tire more easily. It is really eye-opening. If you want to look at these sheets, go to getselfhelp.co.uk Website is great itself (have a look around) but click on the "Self Help" icon on the list on the left hand side and this will give you all the sheets. Some may be applicable to you and will assist you. I have my brother doing the Weekly Activity sheet as he has just retired and at a loss what to do. It has changed him dramatically. ALL SHEETS ARE FREE on the website. Let me know if you try this. I would be very interested. Good Luck
Thankyou all for your replys..I have for the last month been prescribed fluoxetine anti depressant to help with the fatigue and to be honest I feel like a different person my energy levels have improved massively my brain fog has disappeared and I feel like a different me well actually I feel like the me I used to be .
I was also prescribed peppermint oil capsules for my bloating they are for ibs symptoms and have helped a lot too even tho I don't thi l I have ibs ...I do think my symptoms are pbc related and not thyroid as you said ..so I'm hoping that I stay like this as I'm rather enjoying feeling normal not felt like this for such a long time thanks for the advice I will bare it in mind
Hi yes I have both of these conditions the only thing out of your list for me is bloating really and I've recently put on body fat for no reason so their checking my thyroid levels.
I take vitamins and glucosamine as I have arthritis in my. Fingers , I get no pain in them now
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