Sunday, 20 March 2011

you go out shopping for one thing and come back with more!

Hello there ,remember me? the winging one who hasn't blogged for ages because she feels crap and can't get her head around anything....well there is news ..NOT on the Thyroid side of things ,that is still untreated as l haven't been able to take ANY meds since last September which doesn't help that crap feeling..
 but l have wondered off AGAIN..
Do  you go out shopping for one thing then end up coming back with more than you went out for ?
    On Thursday 17th March  2011 between the hours of 9.30am and 11am l was formally diagnosed with LUPUS and SJOGERNS SYNDROME  l cant THANK the Louise Coote Lupus Centre at StThomas's hospital London after YEARS  enough..after years of feeling crap and stronger words that describe this bodily waste..
A nice ,sympathetic understanding  KNOWLEDGEABLE Consultant listened sympathised and said you have ...the above! l only wish that l could see someone in the same mould  who could sort out my Thyroid ..l suppose you can't have it all! or can in this case!since the appearance of the MALOR rash in February 2010 which my GP  first diagnosed as Polymorphic light eruption! the crap feeling was ther and worse..ln September  l went back winging and moaning and complaining of LOTS and my GP said he was thinking it  might be lupus....l read  about it and l was thinking it...but l was surprised none the less to get a diagnoses at my first appointment.They usually don't commit ,and give you the full bank of blood tests and  then you wait another three months to be told that the tests were inconclusive or you don't have ....
 But this time l do...
 so l have to get my head around the websites and apply what l read to ME rather than browse the site not absorb anything and think l probably don't have it any way! the Sjogerns was a bolt out of the blue l thought my dry eyes ,skin and mouth were all down to my Hashi's ...
thought l would up date...thanks for reading..x

Friday, 28 January 2011

Hello all,thought l would update the blog to say where lm at..thankyou for the emails asking how l am..WELL.... BAD!!!! l dont mean WELLBAD like the kids say...! but BAD ..
l have posted this update on my blog at the have to click on healthunlockedbox near the bottem of the page to go to the blog/help forum... l have tried to put the link in for this but it wont direct me straight there...l will get in touch with them and try and sort it out..if you havent been there before its well worth a visit..for information and support in all things thyroid and MORE!!
AS advised back last september l stopped trying to get the Armour thyroid in me and was advised
 to take the Adrenal support /liquorice ticture/ Hydro cortisone...( the theory being get the adrenals working
then start the thyroid meds up again, it does work for other people! )..NO JOY.. my heart races,palpitations and l sweated so much ( the same as when l took iodine) l was told to stop this also..and try to start again slowly in increments...NO JOY...l actually feel far worse when taking my meds /supplements.. As the weeks/months have gone by my symptoms seem to have flipped over!

.l have gone from anxious,racing heart,hyper,and SOooo....sweaty to
being "VERY HYPOTHYROID" ( understandable No meds )

l am taking my blood pressure every morning/ eve and this is very low and my tempreature has dropped lower ,34.4 last night..l am SO tired, lethargic, brain dead and foggy ( even though l still stick to my strict diet) l lack energy ( we went to see cirque solie last night at the Albert hall and l fell asleep!)and concentration ( sorry about the grammar and spellings) and l am in PAIN all over, my hands feet and legs..and my thumb joints keep locking in position!l tried diclophenic tablets but hey guess what they make my heart race and l SWEAT!so l don't take them..

BUT THE UP SIDE is l haven't had a single hot sweat ,flush,or volcanic eruption.( other then when l tried the diclophenic).SO l know l am that age when l doo get hot flushes but they DON'T stop and start when when you do or don't take meds!!! l do have a warm colouring on my face and neck occasionally...OK. but NOT a volcano eruption pressured sweat that leaves you ringing wet and reaching for dry clothes and a towel..and completely unable to sleep at night...

So also because of lack of meds ( l had been on DHEA/Prgnenalone before) my Adrenals are really up the creak l cant wake up in the morning and find it harder to wind down at night..but it doesn't stop me sleeping...l sleep straight through (result)

Now the next thing you ask is how long is this going to last??

well l am in contact with Dr Peatfield ,who hasn't seen anyone like me before!! he cant understand my reaction to the meds..BUT he is so kind and understanding and is there for me.( even though he did ask was l from another planet!.)

My GP has another approach..last year in Feb l came out with a rash on my face then different rashes all over at different times..he said l had the rash because we had a dark winter and l had reacted to the strong sunlight when it finally appeared ..he said poly morphic light eruption.. l went to see my GP  in September the day before l saw Dr Peatfield complaining of feeling ill and hyper when l took my meds and low when l didn't..AND l said l still have the rash on my face (even though l am tanned ) he said he could see it..and said that he was thinking LUPUS...( l didn't now what that was or any thing about it..)he sent me for loads of
 blood tests and refered me to the Lupus clinic at St Thomas's hospital and also the endocrine department..l
have waited for my appointments and l shall be going to the endocrine appointment next Thursday..OMG...l am so apprehensive about is in the endocrine/diabetic ( good /not good?) unit..l will have to see how the Dr is...he'll probably think l am a nutter with my Armour dhea hydro cortisone candida and leaky gut..just have to see how he is before l bombard him..l will probably take my copy of Dr P's book with me and lf l feel we are not on the same level l will leave it with him!! as a gift to him and his future patients..
My Lupus appointment is in March..l have already seen a Dr at the London bridge
Lupus centre who advised me to wait for my St Thomas appointment as the tests cost loads of money and as some of my tests that my GP ran were positive he said to wait.
he advised me to take the hydro cortisone  for the pain BUT HEY you now the song by now ..l CANT TAKE IT ,THO l TRIED........... if only l could string some more verses together ,record it and make MILLIONS l could then set up a research centre for all the millions of thyroids in the world who are miss understood ,ill treated and neglected....

well that was a long update SORRY....wont leave it so long next time xxx

best l go back to bed.....xx


Friday, 20 August 2010


sorry to be silent for a while ( but reading my last blog post l think l needed to be, what a ramble!)
Wow l was surprised to have new FOLLOWERS! thankyou  Abbey , Em and Dana for dropping in!
l haven't been blogging on my original blog Cluckingabout as my camera died...but hope to get a new one quite soon..
As l said, my Dr contacted me from his holidays and said l was badly in need of more Armour and should start taking the Dhea/pregnenalone capsules again as my Adrenal levels had also drastically plummeted .He had stopped them in January. This was because  he had upped the dose of pregnenalone in the capsule and they made me feel ill..when l had tests done in March he said that l had to much DHEA so l could do without them..
l started with half of my Dhea/pregnenalone capsule for a couple of days but l didn't feel good on that so l have been splitting the contents of the capsule in 1/4s and putting the powder into empty tablet capsules
that l purchased from l seem to be much less jumpy and nervous though still not able to wake in the mornings  no energy or any go in me, to do anything, but better in the evenings and l am sleeping throughout the night.BRILLIANT It wouldn't look good if you came into my kitchen and saw me cutting the white powder! until the capsules arrived l was putting the spare powder in foil wraps!My two and my builder did joke with me! l have been on the DHEA for 16 days now...
My problem is still the Armour..l can't take any more than the 1/4 grain as when l have tried to up the dose
by even a 1/12  grain the sweats come with a vengeance!l can't cope with these sweats l would rather be very Hypo than sweating like l have just walked out of a pool!as l am still in Spain the weather has been HOT! one morning at 3am it was still 37C but it is different kind of sweating ( if that makes any sense?) when l have taken to much Armour ( or when l was on levo) the sweats are like a pressure that goes right through me from feet to head  it feels like my head will explode..
l am hoping that as l take more Dhea over time l will be able to increase my Armour dose...
l was advised by a lady who is more knowledgeable then any Dr l have seen from that l do not convert T4 to T3 well ,as my Adrenals are not functioning..which causes the intense sweating ...
l have been waiting for my test results to be emailed to me so l can have a good look at them,
l have a telephone appointment to discuss the findings etc on the 25th August..

In amongst all this l have LOST 1kg  making me 86kg AGAIN! and my apertite has gone  ( mostly!)
l am still sticking to Mary j Shomans thyroid diet book. ( which is so good ).and as l said, although l am not loosing weight l haven't continued to put on ANY! which is what was happening..
l do believe it is tablet/metabolism related..
 My diet is VERY restricted..l am allergic to, so NO dairy,eggs,Gluten,soya,beans (of any type ) bananas,any grains,garlic and pepper.
l have followed a anti candida diet for nearly four years soYeast and any fermented foods drink,smoked food and originally fruit ,but now back eating also off the menu!
l also have cut out  all sugar,natural or synthetic, (with the exception of fruit as My Dr said that better  to eat fruit  than  get cancer ) l was heading to be diabetic if l didn't cut sugar out..all part of the Hashimoto's
 SO wouldn't you think l would be loosing weight! NO....not yet
thankyou for letting me ramble AGAIN l think l might blog more often as maybe l will keep it shorter!
MAYBE ???????