Hello all, just a quick update for you and a warning!

happy_feet

Hope youre all keeping ok.
I got my diagnosis, went back for the reults of the bone scan and it was normal, so...the rhuemy said its likely to be psoriatic arthritis as my dad had psoriasis (on his scalp) I thought maybe he was fobbing me off as my blood showed only borderline for RA and he said there was no specific test for p/s. Now I think he might be right, I have what I now think is inverse psoriasis (its in a personal area) and also a patch of dry flaky skin keeps coming up on my elbow, I never connected any of this with psoriasis though does anyone knows anything about skin psoriasis? I have an appointment with the doc in two weeks to see whether its that or not.
The rhuemy picked up that I have an underactive thyroid, and mentioned it on the report to the doctor and said it might be worth starting her on thyroxine. This was in March and Ive got lots of symptoms but I wasnt sure whether to ring the docs or wait to see if they contacted me, but they didnt so I rang the other day, explained to the receptionist and she said I would get a phone call in the afternoon from the doc about the thyroxine. No phone call so I rang back yesterday, the receptionist said oh I dont know what happened Ill get you in for another call tomorrow (!) So when I spoke to the doc today she did me a prescription for thyroxine. So I dont know if this tiredness is the hypothyroidism or the p/s, or a bit of both as the rhuemy said I only have mild ps and my thyroid is underactive but not by a big amount. Phew!
Anyway, what worries me is if Id not got a copy of the report from the rhuemy, and pushed this Id still be in the dark about it and would have no treatment, how many people dont bother with getting a copy of the reports and are walking about with things that need treatment but dont get it? Also there is something going on with my liver, raised ggt levels so thats a worry but I feel a nuisance going on at them constantly with all these different health things.
Has anyone else been in this position where they pick other stuff up in tests?

dorcas

Hi happy feet

you've has quite the run around with trying to get proper diagnosis!

I've got PA but not the skin disease but know that you can develop psoriasis even years later.

PA can affect any joint and treatment is similar to RA (but not exactly the same). PA is one of the seronegative arthropathies so does not show a positive RA factor which makes it harder to diagnose.

Sometimes it's only after signs and symptoms develop over time that the rheummy can say for sure what type arther you have. (x ray & scans)

It took a year for me to get a diagnosis of PA.

The other thing to know is that you can have more than one autoimmune disease! I have biliary diskynesia (affects liver and bile ducts) and also renal problems....both are autoimmune conditions. I had the liver autoimmune disease 12yrs before I developed PA and the renal autoimmune problems developed 7yrs after the PA??

I've also read of other peeps having thyroid problems too.

The Psoriasis and Psoriatic Arthritis Alliance have a great website with lots more info on the skin disease and the arther.

http://www.papaa.org

Oh and I usually get a copy given to me of all rheummy reports at the clinic and make a point of asking the other consultants (ortho, renal, medical) to copy me in to reports they send to my GP as I like to know what's going on.

Iris x

elnafinn

[Hi there

I find what you have said to be interesting. The medical attention you are receiving or not, seems to be rather lax. Perhaps we should all ask for a copy of the reports so we can check they are doing their job properly.

I would mention that if you have been put on thyroxine you may well find that you feel less tired. I would suggest, if your gp does not, that you have regular blood tests to check that you are taking the right amount of thyroxine daily. I have taken thyroxine since a nodular goitre op at the age of 16 and I will be 60 at the end of this year. I always have at least a yearly blood test to check my thyroid levels and sometimes every 6 months if the dosage has changed.

My daughter has psoriasis in her scalp and every now and again "down there" but does not have RA. As I understand it one can have psoriasis without having RA.

Luv
Elna x

dreamdaisy

Hello Happy_feet. I too have PA which began in April 1997 but wasn't diagnosed accurately until October 2006, when my first, and so far only, episode of skin psoriasis began. It was on my palms and the soles of my feet. I understand that it is similar to RA but diagnosis is difficult. On reading stuff about it apparently it mostly affect the smaller joints of the body, fingers and toes for example, with thickening of the nails. This was not what happened to me. I began with a lump on the ball of my left foot, then my left knee started to swell. The sage is too long to go into now but I know enough to realise that everyone's arthritis is different! What affects me won't affect you and vice versa. That's why these arthritic conditions are so complicated and awkward. My father's brother started psoriasis in his late eighties, and my mother's sister would get small patches of it on her inner elbows. I was born with exczema, developed asthma aged 6 and then the arthritis, aged 37 It all came home to roost in me! I have tried a range of drugs, with varying success rates, and had three synovectomies (2 open and 1 closed) to remove inlamed (and set solid) tissue from my knees. Not sure what else I can tell you but will happily supply any info I can. Daisydream

dreamdaisy

I forgot - KEEP PUSHING! You have to keep asking questions and demanding answers, eg. how might this drug affect me deems a reasonable answer, compared to 'Why me?' I've only ever been told 'why not' in response to that one, mind you, that was the early days and I now realise that there is no fairness or justice in this world. I always thought bad stuff happened to other people, now I'm the 'other people'. I get on really well with my rheumatology support staff and my consultant but I never forget that I am one of many to them and sometimes they do forget to tell me basic stuff, eg when on methotrexate you are supposed to take folic acid but I found that out myself. I don't take it, can't be bothered as meth doesn't cause me any problems, but staff cannot remember everything! Keep probing, keep asking questions, take control of your treatments when you can. It is all such an individual thing. Have a good week-end. Daisydream.

salamander

hi, my consultant automatically copies me into every bit of correspondence he sends to my GP or anyone else. It is standard practice at my hospital. You can ask him to copy you in at your next consultation.

happy_feet

Thanks for the replies, and thanks for the link Iris.
I have an appointment at the docs in two weeks and she said today on the phone when I see her we will discuss whats next, as I will have to have blood tests to see what the levels are. Shes a very thorough doctor and very popular - the earliest app with her was in two weeks and thats a cancellation!
My arthritis seems to move around and I get it in new places all the time. What puzzles me is my feet! The soles of my feet hurt when I walk on them after Ive been sitting for a while or when I get up in the morning, I dont know what thats about!
Im hoping I feel better with the thyroxine, Ive heard it takes a few months so it loooks like Ive got a rough ride ahead. Rhuemy has given me Nabumetome I havent taken any yet. I tried to tell the rhuemy about my thumb, a while ago it used to lock up and I would have to use my other hand to crack it to make it feel better, now it doesnt lock up so much as grind and crack and it goes right through me I cant stand it! Im trying not to use my hand at all for anything. The rhuemy wasnt listening he seems more interested in doing his own little thing when Im trying to explain so when I tried telling him about my thumb he told me to make a fist which I could do no problem, Im sure he thought I was laying it on as he thought I was complaining of pain and said hes referring me to a physio, and talking over me so Im not getting across exactly whats wrong.
Elna does your daughter get scratchy with her psoriasis? Im not sure its what Ive got yet but its not anything thats been passed on

dorcas

Hi happy feet,

I'm glad you're seeing rheummy in two weeks...why not keep a daily diary of your arther symptoms between now and when you see him eg. write down when and where you have pain, swelling, redness, stiffness. fatigue. It can be really useful for you in describing how you've been feeling and it shows patterns that can help rheummy.

Also write down any questions you have and don't leave until you have the answers!

I have arther in my feet (lots of other places too) and it feels like walking on big stones and yes does also happen when I get up from sitting for a while.

Sore hands or thumbs locking is also part of the arther picture and it will be helpful to see physio as in addition to exercise that will help maintain movement and dexterity, she may also give you splints to wear when doing heavy tasks.

Arther can be very unpredictable and appear and disappear in some joints quite quickly ....at other times a flare can last for weeks and weeks. (I'm not painting a cheery picture here sorry :oops:) but the more info you have the better you can help yourself with this disease.

Iris x

elnafinn

happy_feet wrote:

Elna does your daughter get scratchy with her psoriasis? Im not sure its what Ive got yet but its not anything thats been passed on

Yes, scratchy, itchy nor is hers

Luv
Elna x

elnafinn

Regarding your thumb which was locking it could be trigger thumb. I had that - had to straighten it with the other hand. I had a little op (15 minutes under local anaesthetic) and it is fine now. Had both thumbs done in the end on separate occasions. I had steroid injections in them to begine with which helped for a time. Google Trigger Finger/Thumb if you think it might be that. I have OA.

I have a finger doing the same but not very often at the moment, I can cope for the time being.

Luv
Elna x

skezier

Hi Wendy,

Nice to see you again but sorry about whats been happening to you. I think the Thorazine should help you to feel better and well its good they have found out whats going on with you.

I get a bit of psoriasis on my elbows (well it was for years but recently its moved) it can itch but its just flaky and scaly mostly for me. I got told I had pa last year but have had it for quite some time. I am (as far as I know) the only one in my family with either the psoriasis or the pa, there maybe someone in extended family but nobody has ever said.

The thumb thing, mine locks sometimes but in my case I think its probably repetitive strain cus I don't half text a lot :oops:

Hey I really hope you start to feel much better and keep in touch with us and again nice to see you. Cris x

joyful164

dorcas wrote:

Hi happy feet

you've has quite the run around with trying to get proper diagnosis!


The Psoriasis and Psoriatic Arthritis Alliance have a great website with lots more info on the skin disease and the arther.

http://www.papaa.org

Oh and I usually get a copy given to me of all rheummy reports at the clinic and make a point of asking the other consultants (ortho, renal, medical) to copy me in to reports they send to my GP as I like to know what's going on.

Iris x

Hello
II started with a dx of PA in 2007 now. Do not have the thyroid problems though. I wasn't aware that you could ask for copies of your rheumy reports. If I had these would they help you with your DLA ?

My hands and feet are in a very bad way with the PA now and with other prblems like OA and RA and PMR it's a job to know what is hurting the most some days.

I'm lucky that my liver function seems OK and only the ESR ?(Inflammation level) is always raised. I get confused with all the termonology.

joy

frogmorton

Hi Happy

Bad that isnt it? Good job you ahd a ciopy. I don't get one and was thinking maybe I should???

Even if its only 'mild' PA and 'slight' thyroid issues, but still.....they should sort it for you.

The gamma gt's...dont know a thing but my Mum had it too and she ate some bananas for some reason to help....der!!! cant remember why :oops:

You take care

toni xx

dorcas

joyful164 wrote:

dorcas wrote:

... I usually get a copy given to me of all rheummy reports at the clinic and make a point of asking the other consultants (ortho, renal, medical) to copy me in to reports they send to my GP as I like to know what's going on.
Iris x

Hello
II started with a dx of PA in 2007 now. Do not have the thyroid problems though. I wasn't aware that you could ask for copies of your rheumy reports. If I had these would they help you with your DLA ?
joy

Hiya Joy,
When you think about it...it can only help your case for DLA to include all the info you have on the progress of the disease and the treatments you're on.

When I applied (2004) I included all the reports I had from rheummy and medical. I was given high rate mobility and low rate care and in the decision letter back from DLA bods it said that the decision had been made on the basis of the info contained in the application and the accompanying reports. :!: they made the award indefinite after a year too.....so for me it was definitely helpful.

...and why shouldn't we have copies of our reports? in these days of inclusion and patient participation just makes sense to be included. My rheummy does it automatically, so does renal but medical have to have a wee nudge to remind them!

Iris x

ps (it's not too late if you don't have previous reports...ask about (write) getting them copied and sent to you....I did that with ortho.)

pps
having reports is also helpful for OH, AtW and HR when you are in the situation of having to battle with employers about DDA.
Iris x

happy_feet

Hi again,
Yes everyone should ask for a copy of letters, I didnt know you could get them I was asked when I first went to see the rhuemy if I wanted copies of letters, obviously it comes in handy...
Iris I have been to the rhuemy twice now, my appointment in two weeks is for the doctor to see if I have psoriasis going on and to talk about this thyroid thing, the rhuemy has said to go back and see him again in six months.

You know the strange thing? I was told years ago that my thyroid was borderline and it would probably go underactive, I had no symptoms then theyve crept up on me, yet yesterday when I spoke to the doc she said it was worse then than what it is now. How strange when I had no symptoms then, and its not as bad now yet I have symtoms. Even the doc said it was odd. I thought it was all in my mind and I was lazy... Ive been really tired for ages, before any diagnoses its only now Its all starting to add up.
Apparantley sometimes PS and thyroid trouble is connected as its an auto immune thing, so I would say anyone else that feels wiped out all the time and has other strange or vague symtoms to get your thyroid checked, its quite common and a lot of people dont know they have it.
And always get a copy of those letters!

rosebud

Hi happy

Did your Doc tell you that you are now entitled to free prescriptions as you are hypothyroid? If not ask about it, the Doc needs to fill in a small form.

As you are newly diagnosed hypo you should be getting bloods tested every 6 weeks and your dose raised until your TSH is around 1. If you have any thyroid questions give me a shout and I'll post a link to a very helpful thyroid forum.

I agree with the others about always asking to be copied into reports also regarding thyroid blood tests always ask for the actual results plus ranges used so you can monitor your progress.

happy_feet

rosebud wrote:

Hi happy

Did your Doc tell you that you are now entitled to free prescriptions as you are hypothyroid? If not ask about it, the Doc needs to fill in a small form.

As you are newly diagnosed hypo you should be getting bloods tested every 6 weeks and your dose raised until your TSH is around 1. If you have any thyroid questions give me a shout and I'll post a link to a very helpful thyroid forum.

I agree with the others about always asking to be copied into reports also regarding thyroid blood tests always ask for the actual results plus ranges used so you can monitor your progress.

Thanks Rosebud, I have the results of my last thyroid test if you know stuff about the levels?
TSH 5.0
FREE THYROXINE 9.7

The doc wrote me a prescription for 50 micrograms of thyroxe and I took the first one yesterday.

I also take Epanutin and already get free prescriptions, do I need a medical exempt certificate even though I get prescriptions free anyway? My sis went for my prescription of Thyroxine and the woman in the chemist got very snotty with my sister, demanding to see my certificate and saying I must have it next time! I would have thought with the epanutin and thyroxine making everything free I wouldnt need a certificate. Ive never been asked in 20 years!

rosebud

Hi Again

Your FT4 looks like it could be just under range or near the bottom. Different labs use different ranges. Where I am the range is 8 - 20. Your TSH isn't too bad, some Docs will not treat until it gets above 10 yet some people can have severe symptoms with results like yours and others can have a TSH of around 100 and have hardly any symptoms. Likewise just because your results don't look too bad it will not necessarily mean that you will only need a small amount of thyroxine. some people will get back to normal on 50mcg yet others will need over 200!

Even levels like yours can cause a significant rise in cholesterol, so it's good that your doc has given you thyroxine.

There's a good little book in the Family doctor series, Understanding Thyroid disorders by Dr Toft. It gives a good explanation on where levels should be for optimal health.

It's best for absorption to take your thyroxine first thing on an emty stomach with water and away from other meds and supplements.

I'm sorry but I don't know anything about epanutin and free prescriptions but if the chemist was getting snotty it may be worthwhile getting an exemption certificate through your doc.

I'm a member of this thyroid forum. Without the help from these people I would not be nearly as well as I am today.

http://thyroid-disease.org.uk/index.php?option=com_smf&Itemid=93

On the left hand side there is a link to symptoms. Have a look, you will probably be surprised at how many you have, yout thyroid can play havoc with your whole body and mind!

happy_feet

rosebud wrote:

Hi Again

Your FT4 looks like it could be just under range or near the bottom. Different labs use different ranges. Where I am the range is 8 - 20. Your TSH isn't too bad, some Docs will not treat until it gets above 10 yet some people can have severe symptoms with results like yours and others can have a TSH of around 100 and have hardly any symptoms. Likewise just because your results don't look too bad it will not necessarily mean that you will only need a small amount of thyroxine. some people will get back to normal on 50mcg yet others will need over 200!

Even levels like yours can cause a significant rise in cholesterol, so it's good that your doc has given you thyroxine.

There's a good little book in the Family doctor series, Understanding Thyroid disorders by Dr Toft. It gives a good explanation on where levels should be for optimal health.

It's best for absorption to take your thyroxine first thing on an emty stomach with water and away from other meds and supplements.

I'm sorry but I don't know anything about epanutin and free prescriptions but if the chemist was getting snotty it may be worthwhile getting an exemption certificate through your doc.

I'm a member of this thyroid forum. Without the help from these people I would not be nearly as well as I am today.

http://thyroid-disease.org.uk/index.php?option=com_smf&Itemid=93

On the left hand side there is a link to symptoms. Have a look, you will probably be surprised at how many you have, yout thyroid can play havoc with your whole body and mind!

Thank you so much for the info Rosebud, I cant believe how many symptoms there are and how many Ive got! The tiredness and exhaustion is what gets me the most, I just cant understand why I would have symptoms now when it seems the tests show its a bit better than nine years ago, and not before when my thyroid was worse :? Its really strange, unless my symptoms are part of the PS and not thyroid related. Do the cholesterol levels go back to normal when your thyroid is sorted out? Does high cholesterol do lasting damage? Thats a bit of a worry I dont fancy heart problems on top of everything else. It sounds crazy but I do hope this tiredness is all to do with my thyroid, I cant imagine having to live like this forever I hardly move off the settee and feel so lazy.
I take it FT4 is Free thyroxine? Im learning something new all the time thank you

rosebud

At a guess I would say that your symptoms seem much worse now because you have been left without any treatment for a 'borderline' thyroid problem. My results never got really bad but over the 2 years that I fought to be treated my symptoms got much worse to the point that the Doc thought I had ME and I had to stop working for a while.

your colesterol levels will drop when optimally treated. Yeah, FT4 is free thryroxine.

It can be difficult to work out what is going on when you have various other health problems and take different meds. Tiredness could be part of your PA or due to other meds you are taking. If you make sure that the Doc treats your thyroid until TSH is around 1 or even lower and gets FT4 to near the top of the range that should really help with the exhaustion.

It may also be worth asking for ferritin and B12 to be checked also as if these are low it can result in similar symptoms to hypo.