Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use http://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

Long time away

Page 6 of 11 Previous  1, 2, 3 ... 5, 6, 7 ... 9, 10, 11  Next

View previous topic View next topic Go down

Long time away

Post by Amanda Lynne on Tue May 19, 2015 9:13 am

First topic message reminder :

Hi All
I'm afraid I have been away from the forum for quite a while, I've been feeling really quite unwell and not able to contribute. I'm sorry I've missed all your happenings and it will take me a while to catch up. I do know Nancy has had her op, well done Nancy hope you are recovering now, sending you much love.
I hope any other members who have had their ops while I've been absent are all doing fine and enjoying their newly found health.
I'm still in limbo land rheumy is desperate to put me on autoimmune treatment but as none of my blood tests have shown anything remotely inflammatory, every test done 3 x and nothing, whereas when I had vasculitis 19 years ago it was showing up on every test done and then cleared completely. I'm reluctant to agree at this stage.
I myself am querying possible Thyroid, my Endo  so let me give you guys my symptoms and see If it rings any bells, sorry it's quite a long list.
Extreme tiredness
Aching joints- hips, knees, feet, hands, neck, lower back
Stiff muscles
Sore eyes
Dry skin
Blotchy/reddish skin
Sore edge of heels so painful I can't rest on it at night
Burning feet.
Feel like death in morning
Palpitations 
Brain fog
Thinning eyebrows
Flakey nails
Headaches
On off blurry vision
Feel cold most of the time
I'm sorry it's not parathyroid related but since that operation I've actually got worse not better and as they have ruled out pth causing these symptoms I'm struggling with a diagnosis. Everyone is adamant FHH is not the problem.
I have had one low T4 test but was told as it didn't show again that this was just a one off.
Thanks in advance for any help, I'm at my wits end.
Love Amanda xxxx


Last edited by Amanda Lynne on Tue May 19, 2015 9:14 am; edited 1 time in total (Reason for editing : forgot something x)
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down


Re: Long time away

Post by Amanda Lynne on Mon Aug 24, 2015 8:46 am

Hi Sue yes that sounds exactly like it, it feels more in the groin area than outside of hip. But I know it's not hernia etc had that checked. 
Oh no I hoping it's not that but who knows with my luck. There's definitely something going on causing this how can I be in pain from my feet, knees, hips, back, neck, hands, eyes, sore gums, dry skin, losing eyebrows yet they say noting obvious.
Sorry for having a winge feeling a bit down at the mo.
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Admin on Mon Aug 24, 2015 2:42 pm

Hi Amanda

Sorry to keep coming back to this, but dry skin and hair loss are classic hypothyroid symptoms.

Edwin
avatar
Admin
Admin

Posts : 437
Join date : 2014-03-29
Age : 66
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Mon Aug 24, 2015 4:22 pm

Hi Amanda

Sorry to hear you are still going through problems. I'm researching Sjogrens Syndrome at the moment and there's a whole lot more to it than just dry eyes and mouth. Just the pages about it on patient.co.uk contain a lot of really useful information and there are links with Vit D deficiency, parotid gland enlargement, neuropathy, blepharitis in the form of having very sticky eyes in the morning  ( hello Audrey - I think you suffer from this if I recall correctly). There are associations with GERD, general dry skin, fatigue, polyneuropathy (usually of the facial or trigeminal nerves), salivary/submandibular gland disorders (are me at the moment), joint pain, swelling, etc, etc.

Phew! And the most interesting association is with autoimmune diseases and the fact that Sjogrens might cause various autoimmune reactions. I wonder if you can relate to any of these symptoms? I certainly can!

Apparently the ESR may be raised and rheumatoid factor is more often positive in Sjogrens syndrome that it is in rheumatoid disease itself.

It might be worth checking out, Amanda, as lots of your symptoms are in its picture.

For my part, and the pain in the soft tissue at the angle of my jaw plus submandibular and submental gland swelling/discomfort, I've been dismissed by the Rheumy (and told to live with it and stop looking for a cause for it!!!) and am now being seen in the Pain Clinic. That's the last resort as far as I'm concerned - it'll be Gabapentin for me next!

But I've insisted on being seen in the ENT Clinic, and that will be this Friday. I asked for the Head/Neck Clinic, but was sent an ENT appointment. We shall see what happens. I'm just sifting through my paperwork for this consult at the moment and came across the Sjogrens details. Looks as though this could apply to me as well. It can progress to non-Hodgkins, so with my neck/face swelling I would want it ruled out sooner rather than later.

Keep on keepin' on, Everyone, and keep us posted, Amanda and Nelly.

Love from Tigerlily xxxx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Mon Aug 24, 2015 11:03 pm

Hi Tigerlily
They may be wrong but my optician and eye consultant didn't think I had Sjorgrens because the said my eyes would show up with very dry patches on the slit lamp examination. Also I've had every reactive blood test done about 6 times and not even one is remotely near showing anything.
Have you had your eyes checked to see if any are showing. You definitely do need to get everything checked as you are still suffering so much.
Good luck with Friday's appt let us know how you get on.
Love A xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Tue Aug 25, 2015 5:16 am

Hi Amanda
Glad to hear you've had this ruled out - I'm just clutching at straws here really, and was quite shocked to find that Sjorgrens has such complications.

I'm hoping that Friday's appointment sheds some light on the jaw problem. I felt so much better for 4 months after the PTH surgery, and the Rheumy I've seen believes that the jaw thing is not related to the PTH issues, so confirmation of that would be a result in itself.

Your comment about "losing eyebrows" is interesting as I believe loss of the outer third of the eyebrow is a hallmark of a thyroid disorder. 

Whinge away m'Dear, don't ever worry about that on the forum, and I hope someone can come up with some answers for you soon.

Love from Tigerlily xxxx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Tue Aug 25, 2015 10:06 am

Thanks Tigerlily 
Hope you get some answers on Friday.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Lucycatnaps on Tue Aug 25, 2015 4:27 pm

Hi Amanda and Tigerlily,
I truly hope that we all can find some answers as to what is going on inside us.  None of us want to feel this way and asking questions or describing symptoms to my mind is not whinging.  It should not be so hard to find answers but sadly medics have limited resources and time.  
I wrote about my hip as I wonder if my raised calcium from FHH was the cause, although I don't regret having it done as walking was becoming very difficult.  It can still feel sore down my thigh at times but a huge improvement!  I never saw the surgeon after to ask how bad it was.  
Tigerlily, I had work up last year for Sjogrens and it came back negative, I had to have a tiny spit gland from inside my lower lip biopsied and I can still feel where they did it, as in nerve damage.  I had my submandibular duct on floor of mouth dredged as well as it blocked and now it looks like the other side has a stricture as well.  They can see I have a dry mouth but say it is common in older people.
I've been off my thyroid meds for ten days now, have my thyroid scan tomorrow thank goodness, as in if I wasn't half baked before I am totally kookie now, am soo tired and woolly headed, just cannot think straight!  I hope it doesn't take another two months for the results.  Little kitty is starting to explore the big wide world under supervision, climbing trees is so much fun, coming down again needs more practise.
Take care, Sue xx
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Tue Aug 25, 2015 6:05 pm

Good to hear from you, Sue - hope the thyroid scan goes really well tomorrow.

Say Hello Kitty for me!

Love from Tigerlily xxxx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Tue Aug 25, 2015 6:34 pm

Yes good luck Sue, brain fog, remind me why you are having the scan.

Nelly
avatar
Hadleigh

Posts : 800
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Lucycatnaps on Tue Aug 25, 2015 7:24 pm

When I had a sestamibi scan at the beginning of June, it came back negative, however it did show an "incidental discrepancy" as my endo wrote to me, on the right below my thyroid which they say may be ectopic thyroid tissue.  So he booked this thyroid scan.  I have looked up ectopic thyroid tissue and it seems it is very rare, but hey I seem to be good at rare!  As FHH  does not cause symptoms and I am full of them he ordered the scan.  My thyroxine was increased to 100mcg back in April but I am still on the low side with free T4 but he is against T3.  So he will decide what to do when he gets my scan back.
Go get a kitty Nelly, apart from your legs looking like you have been through a bramble patch they are such fun!
Hugd Sue xx
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Tue Aug 25, 2015 7:46 pm

100mcg is a fairly low dose so an increase might be all you need Smile

Hmmmm, rather have another puppy but my little choccy boy wouldn't be happy sharing his mum Neutral

I'll just remind Mr Admin about kitty scratches and his newly acquired habit of bleeding for England  affraid

xx
avatar
Hadleigh

Posts : 800
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Admin on Tue Aug 25, 2015 8:57 pm

It's frightening that docs seem to believe that T3 is dangerous.
However, unlike most drugs, T3 does not have any side-effects.

As with any medication, too much T3 over a long period has the potential for causing heart and bone problens and these are what docs are focussed-on.
What they ignore (conveniently for them) is that too little T3 causes more damage then too much.

All organs in our body need T3.  If they do not get enough, they slowly shut-down.  The brain is usually the first to deteriorate, starting with brain fog, tirednesss, loss of short-term memory, depression, anxiety and there are stong indications of a link to dementia.

It's ironic, considering that docs are supposed to "do no harm", yet they mostly refuse to test FT3 or prescribe T3.

Edwin
avatar
Admin
Admin

Posts : 437
Join date : 2014-03-29
Age : 66
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Wed Aug 26, 2015 9:18 am

Hi Sue - do so hope this goes well today and the mystery discrepancy is unveiled!

I'm a total FHH sceptic, I'm afraid, as there seems to be a lot of scope for false positives and false negatives in the testing for it, and I wouldn't be surprised if this turned out to be a stray PTH gland!

Do keep us posted - stroke Sally for me - and 'Kitties all round", Nelly!

Love from Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Lucycatnaps on Wed Aug 26, 2015 9:40 am

Honestly TigerLily,
I don't know what to believe anymore, the minute I say "What if it is wrong?" or "If I have had it all my life, why get symptoms for only the last few years?  My OH then says "you are in denial, accept it, move on, you saw the top UK doc and he told you it causes no problems, it is you just getting older as we all do.  In other words we all get aches and pains.  I've never been one for sitting around, always busy but I just have no oomph anymore, even for my hobbies, it takes me all my time to do anything.  Also with FHH it runs through everyone in your family and so far it is just me, and the answer to that is I am the start of a new chain as my mutation is a new one not in the data bank.  From what I have read, it seems if I did have surgery all my parathyroids would be slightly bigger as they are overworked but taking 3 1/2 out would not cure as it is the kidney Casr receptors that trigger the release of excess calcium out the body.  This is why it seems if all four are swollen, scans only have a 30% chance of seeing them.  What does bug me is the fact that in A Danish study, cinacalcet was trialled in FHH with good results and an improvement in qualtiy of life with very fee side effects.  Here NICE have not licensed it for FHH only HPTH.  Just getting ready to go for scan, thanks for your kind words and lets see if it really does show anything!.  It reminds me of when I read the book "The Help" where one of the sisters was handled with kid gloves due to her heart defect, which later turned out to be a fly that had landed on her X-Ray!
Hugs back, Sue xx
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Wed Aug 26, 2015 11:15 am

That's exactly what they've all been telling me, Sue - almost as if they (various consultants) have been reading from the same script - get over it, it happens as you get older, all this decrepitude is "normal for your age".

Well, I didn't sign up for that - and certainly not for the swelling in my face/neck that only the female pain specialist can see (and most usefully help with - with specialist TENS electrodes and lidocaine pain patches).

If you are the start of a new mutation for FHH then that particular detail must mean, I suppose, that you defo have it, in which case any sort of PTH-ectomy is not the answer. That NICE have not licensed Cinnacalcet use for FHH seems wrong to me too. I can see that they wouldn't want to be paying for it for everyone, but those with FHH must be just as rare as those people with inoperable HPTH. Unfair, that, in view of the Danish study.

Love the story about the fly on the X-ray! Whatever else you have had, you still have an intact sense of humour, which is a very good clinical sign in my book!

Will be waiting to hear how the scan goes today - Love from Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Wed Aug 26, 2015 11:35 am

Incidentally, Sue - have you ever checked out Neurofibromatosis?  There's no way I would want to wish it upon you but I recall you said somewhere that you had been diagnosed with sphenoid wing dysplasia and I came across something today that stated that 50% of cases of this are associated with Neurofibromatosis:

neuroradiologyonthenet.blogspot.co.uk/2009/03/spheniod-wing-dysplasia

When checking s/w dysplasia on Wiki, it stated that the associated ligaments can sometimes ossify. There seems to be a link there with the bone remodelling that can come about with higher Ca levels.

Just some stray thoughts to seek out a reason why you might persuade the medical profession to prescribe Cinacalcet for you - do ignore if not relevant.

Love and Hugs from Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Lucycatnaps on Wed Aug 26, 2015 11:38 pm

Hi again,
It's not me with sphenoid dysplasia, I had a tentative diagnosis of Relapsing Polychondritis back in 2006 which involved my outer ear cartilages swelling up but since then it has been mild, but that was the start of it all.  ENT sent me to Rheumatology and I was under their care until last year.  I did watch the programme the other night about a very brave young boy that had NF1 in his leg, he has been through so much in his life already, it puts me to shame.  I had my scan this afternoon,  felt a bit faint having to extend my neck backwards so was glad when it was over.  I am not sure how long it will take for the results but the chap doing it was very tight lipped and would not give me a clue if he saw anything.   I hope Friday goes well for you and that they can find what is causing your jaw swelling/pain, wishing you luck anyway.  I also hope Amanda finds some answers soon, I don't mean to hijack your thread.  I am still convinced you have a thyroid problem!  I shall be glad to restart my Thyroxine, had to go sleep when we got home today.  
Take care, Sue xx
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Thu Aug 27, 2015 9:03 am

Hi Sue

Sorry I got confused with you and the sphenoid wing bit - I was just blown away by the connection of 50% of these cases with Neurofibromatosis!

Glad you had the thyroid scan OK yesterday - yes, they can be very non-forthcoming these scan operators, can't they? I found out recently that the report is done almost straight after the scan, so I went and requested a copy from Medical Records, as the appointment I was given to discuss the results was a month later! It didn't go down very well with the department that ordered the scan (and they told me all was normal) but at least I wasn't waiting and worrying for another month.

Will report back on tomorrow's consult at ENT. Quite a watershed for me this one now, as I just want some sort of diagnosis of the jaw swelling. It's the not knowing that is so difficult to handle. 

Love and Hugs from Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Thu Aug 27, 2015 9:25 am

Hope you get some answers tomorrow Tigerlily Very Happy
Nelly
avatar
Hadleigh

Posts : 800
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Thu Aug 27, 2015 9:42 am

Thanks for caring, Nelly!   Will report back.    Hugs, Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Thu Aug 27, 2015 12:11 pm

Hi Sue & Tigerlily
Just a quick one to say hope you get your results soon Sue & Tigerlily good luck with tomorrow xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Tigerlily on Thu Aug 27, 2015 4:28 pm

Thanks, Amanda - all our forum friends here are so supportive it's such a valuable thing to have, isn't it?
Hope you are bearing up yourself, Amanda, and that you have the strength to push for answers.
Love from Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sat Aug 29, 2015 7:22 am

Hi Tigerlily
I agree the support I've had from people on the forum has been brilliant, more than some of the DR's I've seen.
I'm still going waiting to see what my latest blood tests show (if anything).
I had physio on back Thursday. Although he's just Graduated he's really keen to help and found the area that is giving me the problem which radiates through my back, hip and into top of leg and with just the tiniest of pressure he repeatedly put on it it has felt slightly better. I'm not sure if it will wear off and go back to how it was but any improvement is a huge boost to me at the moment.
It's such a shame under the NHS he can only treat the specific thing I've been referred for ie lower back, as I'm sure the neck, feet and hamstring problems are all connected to each other.
Still I'm grateful any help I can get.
Hope you all have a great bank holiday weekend and get some sunshine sunny
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Hadleigh on Sat Aug 29, 2015 8:37 am

Amanda have you tried a Chiropractor ? I see my Chiro every 6-8 weeks and she treats whichever bit is dodgy at the time or if nothing is bothering me she does a general check of everything. In the past I have been to physio for my back and honestly its been a waste of time, done nothing to improve it at all.
There is also Bowen Technique which a neighbour does, similar to Chiro but you get music and smelly candles as well ! does work though.

Just a thought Wink

Nelly
avatar
Hadleigh

Posts : 800
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: Long time away

Post by Amanda Lynne on Sat Aug 29, 2015 1:32 pm

Hi Nelly
I've been going to chiropractor for a while and he treats my shoulders and lower back sometimes but he seems to do more deep tissue massage than anything else and is reluctant to do much else as I have osteopenia. Am I being fobbed off ? 
I never know which is best osteopath or chiro and what's the difference ? There is a private physio near here also but I'm not sure who would be best to treat me.
I did go to a chiro years ago for headaches neck tension but they insisted on keep cracking my neck whether it wanted to or not and I'm sure they have made it worse in the long run. Needless to say I quit them quite quickly.
Smelly candles work for me Very Happy
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Long time away

Post by Sponsored content


Sponsored content


Back to top Go down

Page 6 of 11 Previous  1, 2, 3 ... 5, 6, 7 ... 9, 10, 11  Next

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum