Still waiting on endo to contact me

[birkie]

Hi everyone ♥️

I just wanted to ask if I'm being unreasonable in wanting my endo to get back to me.. I sent an email to my endo regarding my blood results as my gps receptionist said they themselves could not obtain them due to them being on the ICE system, I sent her the email on the 30th June 2020..i was informed she would be back in her office on the 7th July.. I've had no response from her. I managed to get somewhere with my surgery in that they gave me information on my T4.. As waiting on endo to get back to the gp.. My calcium was the same, as was my Parathyroid hormone test so still waiting on endo to look at my T4, calcium and PTH results.. And decided what needs to be done.. Also on my medication as she wants me to take it twice a day instead of once

Any advice would be appreciated

Thanks

Karen

[endomad]

I would ring endos secretary or receptionist and say you are popping in for a print out of the test results. I had a very good endo who always read an email if i sent it but rarely replied. I sent an email to apologise and say i couldnt make an appt he just emailed back 'prescription left on reception' his receptionist always gave me my test results. I just think their priorities are different to ours, let reception know you are coming in for the results, dont be fobbed off with 'endo needs to see first' just say she has had plenty of time to review them and that you need them for your records, preferably with the letter for your GP, she prob hasnt dictated it yet. I had to accept that I had to chase everything, its was time consuming and a bit annoying (i even had to phone hospital pharmacy a week before every appt to make sure they had my T3 in stock to save me another 60 mile round trip to collect it) Its not unreasonable to expect some level of service, i did and was often disappointed.

[birkie in reply to endomad]

Thank you so much for the reply endomad

I've just been to my surgery to pick up a 24 hour urine bottle.. As we are not allowed to walk in I had a consultation on the pavement outside with a member of staff.. 🙄 She told me my endo as drafted me a letter saying all my bloods are normal.. My T3 was 2.5..range.3.10..6.80pmol/L

T4..1.8.range..11.00..22.00pmol/L

TSH..1.28..range 0.3..4.5.mu/L

Calcium 2.6..no range.. And I can't work it out on line..

PTH.. 8.1..range..1.66.9..i can't work this out either... And I'm having symptoms of hyper/overactive.. (my thyroid was removed last May total thyroidectomy)

Any help would be much appreciated

Karen. ❤️

[endomad in reply to birkie]

I am a nuisance and would have said 'great i will take a copy of the draft for now' and waited for it.

I have no experience of calcium or parathyroids other than i know IT IS EXTREMELY serious if not right, my thyroid was removed 2009 but luckily they didnt damage mine. All i know is once you start getting pins & needles then your calcium is serious and get yourself to A&E

I do not think your bloods are normal at all, if those were my results i would not be feeling at all well. Usually on T3 you TSH barely registers (mine is 0.04) the T3 low but you left 24h before test but still bit low.

What are your hyper symptoms? under & over can be same symptoms but as you had graves im guessing you know the difference.

Can i suggest you join a facebook site called Without a thyroid UK

facebook.com/groups/4762248...

A lot of the girls there know all the PT and calcium stuff as have been dealing with it for years, they certainly know more about than their endos and will know exactly what is going on.

[birkie in reply to endomad]

Hi endomad

Thanks for the info.. ❤️ I actually had hyperparathiyroidism in 2004 but the gp I was with at that time did a wait n see approach they put me on a drug for six weeks then my bloods came back normal and they took me off the meds and no further action.. So I know my symptoms are related to overactive parathyroids.. I have sweating tremors. Very thirsty urinating a lot and I have pins and needles on my hands.. I've just had word from my endo that my calcium was OK although my PTH showed it was raised.. She wants the 24hour urine now.. So now its time to try to pee in to a big plastic bottle.. I've done this in 2004 its not nice😵

[endomad in reply to birkie]

LOL yes i needed 2 big bottles hahaha that surprised them, i drink easy 3- litres of water a day. Even at my most hypo i sweated buckets, it was miserable, also i went straight into menopause after thyroid removed. I had sweat running down my neck, my hair would be soaked, i have never been over medicated.

Have you been tested for diabetes as thirst and constant wee a big flag, mine is normal but i drink masses of water and wee non stop, what colour urine? sorry but it should be no darker than pale straw.

I am worried about the pins and needles because on the fb page i often see that as a warning sign linked to calcium, i skim it tho as not applicable to me.

My concern is if your dr understands this stuff, its hard enough for those with it to follow but i am coming from the perspective of having had a few utterly useless/dangerous drs. You need specific help and from someone who understands the results & ranges for calcium an PT. x

[birkie in reply to endomad]

Hi

To be honest this is the endo who saw me in 2004 with hyperparathiyroidism it was her who said my bloods were OK and no further action so no further bloods were done I have since found out that you need several blood tests to make sure you calcium levels remain in the normal range this was not done I have also found out that any raised calcium levels in the blood or urine should be thoroughly investigated.. I'm afraid she is not my usual endo I was moved over to her because of covid.. If I could only control the sweating like you I'm soaked it's embarrassing with sweat running off your nose n down Yr face.. After my thyroid removal this improved I didn't sweat anywhere as much it's just got worse this last 2 months hence me thinking its my parathyroid glands because I've got the same symptoms as I had in 2004..😩

[endomad]

Its also about getting an endo who understands this stuff, my endo was great with thyroid stuff, pro t3 and super helpful, however i have extremely low cortisol and insufficient adrenal function, he gave me hydrocortisone steroids but said he had no idea how to help my adrenal function or anyone he could refer me to who did. The best advice iv ever had is from fellow sufferers who have been through it and found what works x

[birkie in reply to endomad]

Hi again 😊

Ive been on hydrocortisone a few times that's a steroid or I'm I wrong.. But I will say I felt fantastic on it I was on it for 5 months the first time then 6wks the second... my body pain eased. My fatigue lessened, I was so much more alert... But you can only be on it for a short time.. I have ME/fibro ostio/rhumertoid arthritis and colitis and now have no thyroid.... 😵😵

[endomad in reply to birkie]

Yes it is steroids, it bumps my cortisol up and yes my pain is much more bearable on it, more energy but it is not helpful for my waistline

Bloomin heck youve got a full house there. Once you get your t3 at right level the fibro/ME & colitis will go. RA is for life. I have my first rheumatology appt in few weeks, my massive list of symptoms went once on t3 only but never got rid of the pain or fatigue, so rheumy is my next stop. I picked up my blood test results today for the appt, i queried my CRP result it has never been in range, then DOH! im on steroids, of course dr & nurse forgot to say stay off it for few weeks, its always something x

[birkie in reply to endomad]

Hi you know I don't think I've had my cortisol checked it's not on any of my blood tests 🤔

[endomad in reply to birkie]

T3 is quite rough if your cortisol low, worth getting it checked. For me I think being under treated for a long time stressed my adrenals to the point they haven't recovered. You need a level of it for t3 to work well. It's a process of elimination getting well with all we have going on. X