Hi all I’m feeling a bit jumpy tonight,I’ve got this telephone appointment at 9am with what seems like a very good endo who specialises in difficult clients apparently.He also believes in holistic treatment.ive sent any test results and saliva cortisol results over via his lovely secretary,I only did this on Friday afternoon as I managed to get this appointment super quick, so anyway I guess I’m hoping that he’ll look at the tests and cover letter I sent and say ok we’ve cracked this now all your pain and symtoms have been caused by your low adrenal function/ low cortisol all caused by this head injury and we can help that but I’m kind of scared by what will be the next steps especially the way things are just now,I’ve tried to do things in an order as advised here,I’ve been supplementing as advised then I got the MMA test done which suggested low b12 and I should do further testing then I got two lots of cortisol tests done which weren’t great Dhea was terrible too.Im just feeling a bit daft because I’ve struggled and fought and paid plenty to try and get well since this head trauma and now I feel like I’ve finally cracked it in the right direction I’m scared.fingers crossed for tomorrow I know I won’t sleep tonight but I also know this has to be addressed. Ty xx
Endo telephone appointment in morning - Thyroid UK
Endo telephone appointment in morning
Good luck today, let us know how you get on x
Hi endo thank you.I didn’t go with the nuffield endo they kept cancelling and rescheduling but I’d no way of contacting him to forward any test results and didn’t seem much point if he wouldn’t recognise the saliva tests as this is what I’ve been relying on so I’ve researched and gone with this one instead.
I know it’s hit or miss but I’m hoping my instincts are right and I’ve got a good one then I’ll recommend to the list here hopefully.
I’m so nervous this morning hardly slept as usual and fruit and veg man did my delivery at 6.30am so it was just as well I was awake lol.stay safe and thank you again.x
Good luck - you've come this far so try and have some hope
Thanks so much everyone so I’ve just had my consultation with him and what an absolute gem of a man.
I’ve finally got that help and compassion I’ve needed for so long.
He said first and foremost we must work on the adrenals so he’s asking gp if it’s possible to do a sst test but expects it won’t be because of lockdown but if that’s the case then we can do a 8am cortisol test via medichecks,and we could consider a low dose of steroids for two weeks to see how I react but meantime because my sleep pattern is so bad he’s putting me on melatonin to try and rest the adrenals also an adrenal booster and then in two weeks we can look at getting the other testing done depending on what’s available .
He also said my b12 needs help so he’s recommending gp arranges injections again if not possible just now then he can prescribe very high dose supplements until they can do injections.
He also said my d is very low we want that up over 100-125.
He then said my T4 is not good and confirmed yes this could be central hypo because of the head injury,some of you guys did mention this previously to me thank you,
He said at the moment these things are secondary to the adrenals we must get them healthy again and he also said at some stage it would be good if I trusted him to reintroduce hrt ,oestrogen AND progesterone which I questioned due to having had hysterectomy and he said most definately both as the progesterone balances out the bad bits of the oestrogen ,I’m simplifying it because he went more in depth but that’s the gist of it.
I can’t tell you how much this consultation has meant to me it’s been such a horrible few years and lots of hard work to get where I am now,thank you also to you guys for support and advice.
Great result today and he said I’ll never feel unsupported through this he’ll get me well and will call me in two weeks again to see how I’m doing on the melatonin.
All the paperwork will be emailed to me tomorrow,low carb diet relaxation techniques too.im so impressed. Bless you all xx
That sounds great can u privately send me his contact details please. X
With pleasure moleland pm sent good luck x
Brilliant news, took me 4 years to find my endo, so frustrating when specialists often know so little about their specialty. Once you find a good one, stick with it <3 I also had to have 10mg hydrocortisone because of really low adrenal function and had to have low dose estrogen cream. Its a huge learning curve thats for sure x
Hi endomad thank you for that it’s just such a relief isn’t it.Ive had so many rotten consultants, in so many fields ,this last four years and I now know right away when I get a bummer,he was so calming and reassuring and when I wittered he gently steered me back to where I needed to be so that everything had a logical step and he could give me the relevant advice he was so patient.ill be holding onto him for sure,he was 20 years in the nhs before going into private practice and his reviews are all so positive.
Did the hydrocortisone make a big difference to you,did it stop the dizziness and flank pain that comes with low cortisol.xx
Early on the hydorcortisone helped it was to help ease stress, not sure if it still does, i only take it when especially stressed now, as i can feel unable to cope and the adrenaline starts pumping as no cortisol, that then triggers panic, anxiety attacks, its all good fun. My adrenals never recovered.
Nothing has ever really got rid of my pain, especially ankles, knees & hips, its much better some days, tbh i just think im use to a lot of daily pain. At moment i have torn ligament in groin (no idea how as no injury) which radiates really severe pain all of left hip, thigh & knee, so pain wise not even T3 got rid of that. Iv accepted it now, turmeric strangely enough helps my joint pain a bit. I get joint, bone, muscle pain and muscle weakness. I was sports woman before my thyroid was removed, I ran 8 miles a day, weekly judo, tougher muddier challenges, my new reality is 2 gentle walks a day with the dogs, yoga and a bit of gardening.
I’m so sorry to hear that endo I wish I could come up with a miracle cure for you but saying that you cope extremely well under those circumstances.
I had bad hip pain on my right hip on and off for years and ok dexa scan showed oesteopenia in spine and hips but nothing really bad that would cause the pain so I went to a women’s pelvic floor specialist and she worked on me from the inside out.she said my ligaments internally were like wound up springs so tight on that right pelvic side and id one leg shorter because my body was trying to compensate so anyway after that first session I had I couldn’t believe the pain relief I had,she told me that it’s damage caused by traumatic child birth amongst other things and women are wrongly told to do kegels which exasperates the problem,the ligaments and muscles are too tight and need to be gently coaxed out of the spasms they get into,like an elastic band wound up too tightly on one side.She gave me exercises to do at home and it helped so much I actually thought I had a bad prolapse but it wasn’t it was what I’ve just described causing hip pain knee/foot pain right down the outside of my thigh and my back just ached too.
I went to her three times and in between did the exercises she gave me then fell away from it because I moved house to another county,might be worth have a look on YouTube if it interests you it can’t hurt.
Many thanks again for your advice and keep doing what your doing it’s obviously keeping you positive.x
Thats interesting, I live in France now and the health system here is much better than uk, when all this virus business is over i will speak to my GP and get a referral, its certainly worth looking at. Im mostly ok but it does get a bit draining when the pain is constant. I will do some googling as well to see if it fits with my symptoms, thanks x
Fingers crossed for you,sometimes things are not always as cut and dried as we think and it’s good that you are so open minded I like that in people,if it doesent hello you it’s definately not going to harm you.I paid her around £40 a session I couldn’t have put a price on the pain relief I felt and funnily enough the most swelling I had at that time was on my knee on the opposite side so I guess I must have been putting more pressure on that side when walking because of the pain on the right side lol.take care xx
Thrones - would you mind sending me a dm/pm with his details. Many thanks.
Hi Jamima I never got the adrenal booster the costs were horrendous for all the supplementations so I never went down that route.
He was a lovely man but sadly the spiralling costs meant I had to part ways with him so the only treatment I had was the b12 injections and the melatonin that he had recommended but via gp on nhs.I now self inject and another gp has just told me I have Addison’s disease after looking at my cortisol results but that it’s possible to reverse it (as it’s early stages ) by rest and continuing my b12 injections so I’m now just waiting on my 24 hour urine cortisol tests coming back to see if there is any change since I’ve been injecting the b12,I certainly feel tons better.
Many thanks, yes, I’ve just been quoted £240 for the 1st 40 min call with a private endo. I figure it might be worth it if it kicks my gp into some action. Hope you continue to feel better.
Hi it’s ridiculous isn’t it.mines wanted to do 2 weekly consults on the phone plus all the bloods all the supplements and private scripts if the gp doesent play nicely,which they don’t have to if they decide not to.I didn’t get any further my new gp used lockdown as an excuse not to do the further testing the endo recommended so I’m still chasing my tail trying to get answers and it was actually a friendly retired gp who said he’d look at my tests as a favour and he told me what I’d suspected so I’m back on the merry go round of blood testing and cortisol testing again private to try and get something to go to new gp with,I’m weary of it all.
Thrones - do you know the name of the adrenal booster?
I’ve just found out he’s also known to our admin here Louise emailed me when I asked if they’d add him to the list for other people and advised they already knew of him so that’s great.
So pleased you had a good appointment - and thank you for updating us
Thank you fuchsia-pink x
I don’t know yet Scrumbler sorry he’s sending me all the info by email tomorrow and that will tell me everything I have to do,he said he’s putting me on it for two weeks until we can get all the other stuff moving with gp and not to worry he’ll never leave me feeling unsupported and will speak to me again in two weeks.
F course and thank you Scrumbler you’ve no idea the weight he’s taken off me yes I know there’s plenty stuff ahead of me but still great result eh?
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