Soooooooo Tired

Having been feeling quite good for the past week or so (better of bad days) today I feel like someone has opened me up and filled me with heavy weights, body feels so heavy! I'm so tired that if I fell over I probably would fall asleep on the floor!


I looked in the mirror earlier and there's no doubt about it, I look like a bag of s**t! My hair is lifeless, dry and fine and I just look like something is sucking the life out of me!


Still no reply from FP asking if he is willing to see me  


Lucie xx

Sorry you're feeling like cr*p today Lucie. It's a real bummer when you have a few reasonable days then boom, back to legs that feel like they're full of lead and feeling so weary that you don't know if you can make your legs work anyway - or if you even want to try! I've stopped looking in the mirror unless I absolutely have to - too depressing. Just makes me think "who are you and what have you done with Jasmine ....."

I think you can probably make a private consultation appointment with FP without him actually agreeing in advance, just make sure you send copies of all your lab results to his secretary (Sophie) with a brief history beforehand - once you've made the appointment - so he has an overview of your story when he sees you. Do you have private health insurance Lucie? 

Jasmine x

Hi Jasmine,

You're exactly right, I look in the mirror and ask when Lucie will be coming back, she's sorely missed lol

I do have private insurance! I have been in touch with a friend who works in a GP Surgery and she thinks I have a case and I should speak to the Practice Manager of my doctors! 

Do you think if I see FP privately, he could then refer me back to NHS as my health insurance is costing me a fortune each month!!

Thanks

If this condition had a slogan I sometimes think it would be 
pHPT - where every day is a bad hair day!

I've just been to the opticians and so spent a while having to look in the mirror to try on new frames. I got so sick of looking at my depressing lifeless face I gave up and left without sorting new glasses.

I'll try sending you a virtual energy blast, Lucie . 

Jasmine, I guess there's no news yet on whether you won the lovely lamps?

Dee
xxx

Thank you for the hugs Dee, they are needed.

I really can't face seeing my GP anymore, does anyone who has seen FP privately, does he require a referral? 

Thank you

Hi Lucie

You can self refer to see FP privately without a GP or endo referral and yes he will refer you back into his NHS service at the Hammersmith if he feels pHPT is likely, which he hasn't ruled out going by his replies to you. Tigerlily saw him privately for her initial consultation, he referred her to his NHS service and she is now on his surgical waiting list.

No news on whether or not I've won the lamps yet Dee. On the strength of the Oxford lab confirming they had posted my results to Mr P last week I emailed him last night to ask if he had them yet and I had a reply from him this morning to say he hadn't yet received them but will update me as soon as he does. Such a nice man .....

J x

Thanks Jasmine.

I will call my Insurance tomorrow and inform them and book myself in with FP. He's the only one that seems to get it!! 

Have you seen Mr P Jasmine?

Lucie

Yes I've seen him twice now as I've had two surgeries in the past year and my parathyroid disease is still persisting with elevated calcium and PTH. The theory is that I may have yet another adenoma which is most likely ectopic, probably in my chest, but before going any further he wants to rule out FHH. If I test negative for that then the next step is selective venous sampling and 4D CT to try and locate the adenoma prior to a third surgery. If it turns out to be in my neck then a third surgery isn't an option because of the risk to my one remaining functional recurrent laryngeal nerve (the right one was paralysed during previous thyroid surgery), and I will be stuck with medical management of my pHPT - not an appetising prospect! If I test positive for FHH then I have a fight on my hands to try and persuade him to consider the possibility of me having both FHH and pHPT (incredibly rare but not unheard of) evidenced by my continuing debilitating symptoms (FHH is generally asymptomatic) plus elevated Ca and PTH. Should get my FHH results this week. 

Jasmine x

Wow Jasmine! I'm sorry to hear you're going through all of that. It sounds like you are in good hands though with FP. I do hope you can get to the bottom of it soon enough and Mr P looks after you

Xx

Hi Lucie,
I went to see FP at the end of May privately, I just rang his secretary and made the apppointment.  I did not do it through private insurance and just paid the fee when I was billed.  I took all the blood results etc that I had and asked for his opinion.  I did not have a referral letter from my GP.
I really feel for you as you are the same age as my dd and I would not wish this on anyone.  I would be very inclined to change my GP if he only would allow 6 monthly blood tests, as clearly something is not right and it is making you feel awful.  It sounds so similar to how I felt when my thyroid started going wrong (hypo), I felt like I was walking through treacle and I felt like the dormouse at the Mad Hatters Tea Party.  My then GP in London would not treat me but thought in the future I would need thyroxine.  I had lots of problems with my eyes, skin, hair, feet, brain fog, bowels, restless legs, weight gain and many more.  As soon as we moved to Boston, I had my bloods redone and my TSH was 15 and they put me on thyroxine straight away.  It has helped some but I never have felt right.  The other thing on top was low ferritin and anaemia which has plagued me for the last 11 years, have you had your levels checked??  Anaemia can also cause fatigue and breathlessness and also start a vicious  circle with monthlies making them even heavier, I can vouch for that!   Then any new symptoms were put down to menopause.  I had lots of flitting joint pains in my hands and feet and then the ear lobe swelling that the rheumies thought was auto immune RP.  I am lucky in that it has been mild but it now seems my calciums were above normal even then and they never said a word, locum rheumies each annual visit does not help! I now know many of my symptoms were more than just meno.  I now try and get my blood results printed off and if they query it I tell them I have been lied to in the past and now need to see them for myself.  I hope you have some joy in getting to the bottom of your symptoms but I know it is a real struggle at times. 
I also don't have hair anymore, it is thatch!  It is so dry and brittle and never used to be.
Take care and hugs
Sue x

Hi Sue

Thank you for your reply. I will call FP office tomorrow and make an appointment, I will use my private insurance for this one. I have blood test paperwork I can take with me and some Thyroid Ultrasounds. Silly question, does he need all this before the appointment so he can have a glance before he sees me?

Thanks

Sorry Lucie your having a rough time. I know exactly what your saying, I call it slow motion. it feels like your in slow motion very annoying. I really wish I knew why symptoms are really rough at times and some days not a problem. Here's hoping for better days.

Hi Lucie

Jasmine is right - I paid to see FP (£250) privately and then he told me to get myself referred to his Hammersmith Clinic on the NHS. The bill just came in the post a few days after the appointment.

If you can email to Sophie all your stuff in advance, that would be good, but if you can't just take it with you on the day.

I do hope he can help you with all of this. Be prepared to go quite soon as it takes only  about a week to get a private appointment with him, as long as he is not away. It will probably be at the Princess Grace Hospital annexe (across the road) in a street just across the road from the Planetarium (Baker Street tube).

Love from Tigerlily xxxx

Love from Tigerlily xxxx

Hi Lucie,
I just took everything with me that I had plus I got my GP surgery to copy a couple of letters from ENT and Max Fax re the lump in my neck.   I wrote a synopsis of my medical history of the last few years and tried to keep it concise plus my bloods and 24 hr urine result.  He was very thorough and did write to my endo at Boston, requesting that my Vitamin D be checked as that had never been done.  He brought up FHH and said it needed to be ruled out as my urine calcium was low.  So that is where I am now, on Vitamin D and have just redone my 24 hr urine, I get the results next week and hope 6 weeks of D have made a big enough difference to my urine calcium output, it should have been 3 months and test but the silly appointment system sent it early rather than mid November. If FHH is ruled out then I hope my endo will refer me to FP under the NHS.
Good luck with it all
Hugs Sue x

Well, you can add me to this list. I don't just look like cr*p. I look like H*ll! That would be worse than cr*p, right? I try not to leave the house unless I have to, because I just don't want people looking at me. I know I look awful. I haven't slept for more than 4 or 5 hours a night for years, and those hours are all broken. I have no blood pressure. I am terribly weak. I'm in pain. I just simply look like H*ll!

Don't worry, ladies, we will all be gorgeous again someday!!

Jasmine, I am about to post some great news about myself, and I have a very strong feeling you will be posting some wonderful news about yourself before all that much longer! I pray that you ALL will be posting happy news before long!! As hard as we have to fight, I know we will all be well again someday! Hang in there; it WILL happen!!

Audrey

I'm sorry you've been feeling so pants Lucie. It's definitely the day/week/month/year for it 

I'm glad you're feeling fired up with enthusiasm and making an appointment with FP and wish you the best of luck in moving forward.

Love and hugs
Brigitte xx