visit to endotwat

Well just got back from seeing endo, total waste of time, money, energy and diesel. As far as she is concerned there is now nothing wrong with me, wahoo i'm cured so i must be feeling great, end of story. She admits my vitd is too low but other than prescribing a huge loading injection, which for me is inadvisable there is nothing she can do, my low ferritin doesn't need treating , er what ! All other symptoms are unrelated to thyroid or hpth, oh yes ! So apart from the offer of a pointless referral to a rheumatologist and suggesting my GP prescribes T3, which i know she won't, that is it. As long as the bloody numbers on paper look good then all is hunkydory   I gave up and walked out.

Not looking for sympathy just letting off steam 

Nelly

Oh Nelly......how bloody exasperating! It just makes me want to scream out loud when I hear, yet again, of yet another case of someone being so badly let down by the people whose salaries we pay to take care of us and try - yes, at least bloody well try, for God's sake - to make us better! I don't have any words of wisdom or advice I'm afraid, except to say I understand only too well how hard this all is to cope with, on top of having to deal with continuing to feel like crap! Perhaps, when you've had a rest over the weekend and got your head together you can think about taking a leaf out of Tigerlily's book and research, research, research until you find someone you can get on your side who will be willing to think outside of the box.

Love and hugs

Jasmine x

Thanks Jasmine,  to be honest I have had it with doctors and tests now, time to go it alone and attempt to sort myself out. I have bought a different vitd and some liquid iron/vit stuff so will see if that does anything. The worst problem for me is thinning hair, I had hoped it would improve after the op but if anything it's worse, just reading up on zinc which seems to be another piece in the puzzle.

I'm still annoyed at the endos attitude, totally blinkered and one size fits all rubbish, she ignored everything I tried to talk about, just kept repeating that I was fine on paper   I said " I give up" and walked out without saying goodbye 

Oh well onwards I go, her letter to my GP will be an interesting read !! can't wait.

Nelly

Oh Nelly
Do these "specialist" actually know what they are talking about and do they care that their patients are feeling c**p and still having to carry on with their life, it make me seethe.
How can she say low ferritin doesn't need treating its your iron stores for Godsake. What are your current levels mine is around 14 and dropping and I feel absolutely shattered and cold all the time. Low iron will cause hair loss so maybe it could be reason it's not getting better.
You were right to walk out the woman sounds rubbish in fact her attitude sounds very similar to my Endo.
I do hope you start to feel better soon.
Love Amanda xxxx

On a lighter note though Nelly, oh I did chuckle at the title you gave your post ...... Endotwat..... how many of us would just love to call them that to their faces, and the odd endo surgeon too - one in particular springs to mind...... I'll give you a clue - Frank Sinatra and pearly whites .......!

Jasmine x

The other one  commonly used  is " Endoknob" 

I just did a long reply and hit the wrong button  and now I've forgotten what I wrote ! 

Anyway I'm thinking I might get some private bloods done for vits/mins then I have ammo to take to GP, not that she will act on them. My gastro con is more useful so maybe an unscheduled appt with him would be useful.

Oh yes Amanda my ferritin is 68 so its in range but very low end, it needs to be at least 90 for thyroid meds to work and up in the 100s for hair growth but obviously endo hasn't read that page in the book !! 

This getting well lark is bloody hard work 

Better post this one before I hit the wrong thing, new tablet so still have L plates on !

Nelly

Oh Nelly, I'm so sorry! You should have given her a slap on the way out, she sounds like she needs one. It's not right that you should have to try and treat yourself because blooming consultants can't do their job. How I hate that "on paper" remark, silly cow. Endotwat is too good a name though, it did make me laugh until I'd read your post when I wanted to scream in frustration. I'm not surprised you gave up and walked out, in fact you probably stayed too long. 

I'm sorry you're still struggling - it's a bit of a wobbly ride, this recovery from parathyroid surgery for some of us. Will your GP not treat your low ferritin? What am I saying! It took 6 months for our GP to decide to treat my younger daughter. 

Hang in there Nelly. 

Lots of love and hugs 

Brigitte xxxx

Hi Brigitte

Sadly GP twat is also numbers on paper obsessed, she won't entertain raising thyroid meds or treating ferritin, oh if they could only be in our shoes for a week or so  

Whilst on the subject of names, we have renamed our GP's Dr Dick and Dr Dickess

I have already increased my thyroxine dose (2weeks ago) and seen some improvement so will stick with that and do battle with the GP when needs be. Luckily I have a stash of extra tablets  

How are you doing Brigitte ?

Nelly

Errrrm, trying to find an answer for you that's not "crap".... Apparently the Neurologist has found another excuse so I need to do battle with the GP surgery on Monday. I'm not really sure how I'm supposed to regulate my epilepsy medication by myself and I'm heartily sick of having a permanent headache. There are no results available either for my kidney ultrasound or my brain MRI so apparently I'm supposed to soldier on in silence (because I can't stand noise)   I'm quite ready to write off and forget 2014 and if someone knows where I can get a new head for Christmas, without the ache that goes with mine, that would be marvellous. 

Your GP sounds as useless as mine Nelly. I'm going to have a meltdown and demand to see a different Dr on Monday... for all the good it won't do me. 

My Endo follow up is the week after next and I have to get to the hospital for bloods this week, so we shall see. I hope he doesn't prove to be an Endoknob because he's been quite useful so far and he'd better stay on the right side of me if he still wants to write a paper on my "unique" case. I wish I was normal   Well, healthy normal, anyway! 

Love and hugs 

Brigitte xxxx

Hi Nelly,

I'm sorry to hear your suffering still. I was hoping that surgery would have made you feel in some what better. Although I know it's not the answer to everything with the thyroid issues etc. .. 
I'm guessing you had to travel to southmead still. I've seen a few new faces lately on the endo team and I was slightly worried. I have met all of them so far apart from one male foreign consultant. I had a meeting with 3 of the female endos. 
2 of them didn't have much to say.

With regards to your next clinic letter I phoned up about mine the other day and apparently thet are about a month behind and short staffed :/. My mistake if your not under southmead endo team ananymore.
Rachel x

Hi Rachel

I stupidly pay to see one at Spire Bristol, i haven't seen any endos at SM but quiet a few elsewhere and I've yet to meet a really good one, not sure one exists !

Yes Southmead letters take at least a month to be typed, sometimes longer, its been that bad for the last year at least, one letter I had from Mr M was over a month late and totally irrelevant by the time it arrived as I had called his sec with a question and the answer came a month later !!!

Nelly

Hi Nelly, 

I see, I'm with you now.  For some reason I tight you may have been reffered back to see an endo at southmead. 
But the spire and southmead are both a treck for you! 

Such as shame you were not satisfied with your endo appointment. I would have thought they would have been thorough as you were paying privately. I guess it's just the luck of the draw.

Yes I've given up with clinic letters and appointments.  I think they are having problems at the moment.  Short staff, and a back log of appointments.  

How frustrating for you, it's a lot of effort time and money just to be let down and not feel satisfied with your appointment. I was hoping you may have more time at a private appointment,  but if everything looks okay on paper then they have made their mind up.... don't agree with the ferratin not being addressed. What a nightmare.

P.s I don't mean to hijack your post. But apparently on Tuesday my endo is having their monthly meeting over lunch.  She says she will be discussing my case and putting it to the rest of her endocrine team. And seeing if they agree with her.  She will then be reconsidering me for surgery. I hate the thought of being discussed over lunch but hey Ho I guess she wants too see what others think! 

Rachel x

Sorry to hear of all this, Nelly - just a suggestion, but if you get no further why not take up the offer of a referral to a rheumatologist?

At least it's another person to see (I was going to put "medic", but it sounded too close to your name for your Mr & Mrs endo's!!) and it was a letter from my GP to a rheumy asking for his help that got me the first diagnosis of pHPT. My GP included the chart that I keep of all my blood tests (it's 6 pages long in Excel ...!) and my (also very long) symptoms list, and his letter back to my GP (without even having seen me) was a diagnosis of normo-calcemic pHPT.

I was over the moon to receive that. At last I had something down on paper that I could show to people. I know it's not the same scenario for you, as you've already had an op, but I was just trying to say that there is a chance that a rheumy might know something that your GP does not.

Just a thought, anyway - Love, Tigerlily xxxx

I might do that Tigerlily but knowing my GP she won't refer me. I could see one at Spire but it gets so expensive if tests are involved, my GP reluctantly did all the endo tests last year but I don't imagine for one moment she will agree to more. I will see what the endo writes and go from there. Still waiting for a urology appt which I suspect won't be for months as they are always booked up.

Better hope they have a nice lunch Rachel ! I thought she had already agreed to refer you back to Mr M. fingers x for a good outcome.

Nelly

Nelly,  

I also hope they have a nice lunch haha! 
Yes she has agreed but I think she just wants  more back up so she can go to him and say her colleagues agree... maybe they do maybe they don't.  We shall just have too see. I very much doubt I will hear anything this side of X mas.

With regards to the appointments at Southmead, it all seems to be a nightmare. I'm presuming it's the same at all hospitals back logs and short staff, nothing new. 
Good luck with convicting your gp, may be ruhematologists are a different breed compared to endo's?  And approach things differently.  Maybe worth a shot. 

Rachel x

Ah, don't get started on doctor name calling.   I have called mine many pretty names that I cannot post on here!!    Hard to imagine so many of them are such idiots!    

Nelly, I'm so very sorry you had to experience one of those awful appointments.   I am VERY happy you walked out on that jerk!    I agree that she deserved a slap on the way out.    Maybe it would have knocked some sense into her head!

Don't give up, and try not to be discouraged.   Eventually, we do find doctors who listen and care.   Unfortanately, we have to kiss a lot of toads before we discover that prince (or princess).  

I agree with Tigerlily.  It wouldn't hurt to see the rheumatologist.   He/she just might have a clue what is going on with you, and might be able to help.   Couldn't hurt.

Audrey

Hi Nelly,
I am so sorry for not replying sooner, today has been the first day for me to catch up properly on everyone.  Sadly it seems to happen far too frequently that consultants have their own agenda and heaven forbid that the patient has a tongue in their head and uses it.  I don't know if it is total dependence on test results but any holistic approach to a patients symptoms seems totally alien to some of them.  I felt like you do when I had the awful locum appointment in September, his mind was made up I had FHH just on a normal 24 hr urine test.  When I said prove it then he advised I saw a haemotologist to investigate my raised calciums.  I just felt like a number rather than a person.  I tried banging my drum re my thyroid meds a few years back without success.  I have been anaemic in the past and was given iron prior to my hip replacement, I was told to stop it earlier this year as my Hb was finally up at 14.1 from 9 pre hip op.  However I have just noticed my ferritin is low at 22.5, range is 10-204 and my folate is 2.9, range is 1.8- 18.3.  No-one has said anything but I wonder if that has an affect on my thyroxine levels?  I used to take Floradix which is about the only iron that I can tolerate easily.  I have finished my Vit D capsules so am wondering if I should go and buy some more.  I am sorry you are still feeling rotten,  I really hope things improve for you soon.
Great big hugs Sue x

Hi Sue

Thyroxine absorption is affected by low levels of iron, ferritin, b12, folate and vitd so the better the levels the better thyroxin works, unfortunately our dear doctors don't know this ! and won't be told either !!

I bought some Bioglan 1000iu D3 tabs and so far have taken just 4 over the last 5 days and now have the reflux back again, I got this with Fultium 800iu. My next step will be to try the Better You D3 spray but I suspect it will be the same. Next step after that is the tanning tower at the local salon, they have another lady who uses it for treating her vitd deficiency.

I have started on Floravital (can't tolorate iron either )but I can't imagine 10ml a day will have much impact on ferritin levels. Apparently ferritin should at least 90 for thyroid meds to work properly. Our ferritin range is 34 - 528 so I'm at 68 which according to endotwat and gptwat is perfect !! 

I have already upped my Levo dose which endotwat reluctantly went along with but my request for new script from gp has been refused  I have lots of spare to be getting on with and I can't be bothered to fight it out with her right now so will leave that battle for another day. Seriously thinking of changing surgeries but we don't have much choice where we are, we have more vets than doctors around here, our eldest is a farm vet and she knows more than our gp 

So anyway, yes you definitely need good levels of those vits and minerals for thyroid meds to work, just very hard work raising and maintaing them to that level.

Hugs to you to Sue, take care 
Nelly

Gosh Nelly,
I started Fultium 800iu in July as my D was low, looking back that is when my  on off ? Silent reflux became not so silent with mega burping and mouthfuls of acid, it got so bad I went on Ranitidine in September, I finished the 3 months of Fultium  in November and since then the reflux has eased during the day and I sometimes just take the ranitidine at night only.  I never associated the two together!  However taking the D seems to have helped my mouth heal a bit, it is not as sore as it was, still can't use normal toothpaste yet but definitely better than it was.  I think I will carry on with the Floradix again and try and get my ferritin up a bit.  I cannot sing the praises loud enough of my local vets, they did miracles with Lucy when she was injured, amazing when she could not tell them what was wrong! Thanks for your help, I hope you find some answers soon too that will help you feel better, it's not fun feeling rotten all the time.
Take care, Sue x

It's a bit of a nightmare trying to right the deficiencies when all the remedies cause more problems  and of course gp is not interested in helping  

Tiz enough to drive you to drink, except I can't take that either 

Nelly

Hi Nelly,

I'm coming late to the party on this one but Oh, do I sympathise. Two years ago I had a high respect for doctors and the job they do. Now I really struggle not to bad mouth them and that's despite three of my closest friends being doctors. Why do they seem to think that low vit D and low ferritin are ok? I've experienced exactly the same attitude. And why do they ignore symptoms just because they can't be sure of the cause?

I'm now recording all my appointments on my phone so that if I do get round to raising the issue of poor patient care I have plenty of ammunition. 

Hope you are able to regroup and come up with a new plan of attack. It's just a shame that we appear to have to fight the hardest when we are at our weakest.

Lots of love,
Dee
xxx