Update - Endo visit - don't know how I feel!

Well just back from my first endo appointment in 14 months!!! They've cancelled 1 and I cancelled 1 because they didn't send me the blood forms. Had problems getting them again this time too - my own Dr couldn't get the forms either, so he did the blood tests and I printed them out to take to endo today.

So when I said you won't have any blood test results because I have them here, he said oh, why's that then. So told him that his secretary is rubbish and that she never responds to messages. Sorry about that he said.

I tell him I'm self medicating with NDT. He says why's that? I say because I had eye problems in February when on levo and my Dr is clueless about thyroid issues and I haven't had an appointment with you since October 2015. Oh, sorry about that he says.

Then tells me that NDT isn't licensed and that T3 isn't licensed either (I never mentioned T3). Tells me that NDT is dangerous and that they have no way of monitoring it and kept pushing levothyroxine which he can measure!!! I disagreed with him about NDT and he really didn't like it. Also told him the T3 issue is all about money and he disagreed with that, he said there was no evidence that T3 works. I told him if he had a thyroid problem, he'd be begging for T3.

I have Hashi's - and he tells me that I have antibodies for both under and over active thyroid - he said it's rare. He said he didn't have any other blood results on file and I told him that it was because I've not been seen by them for 14 months!!!!

I gave him the BH and Genova blood test results that I've had done myself this year - 3 lots.

I've got hypopituitarism too as pituitary isn't producing TSH. I asked him why the letter that his colleague sent to me said that this was the only hormone that was an issue, when they never even measured the others. He couldn't answer that and agreed to test all pituitary hormones including ACTH, with the exception of sex hormones as I'm menopausal.

I mentioned possible adrenal problems and gave him some symptoms and he said possibly adrenal insufficiency and said he will do a cortisol test (I know a saliva test is best), but I wasn't going to refuse - I had 5 phials of blood taken today.

I mentioned that the reason that I stopped levo was because of awful problems with my eyes (which are much improved on Omega 7 supplementation). He's referring me to the eye hospital for a check up. I mentioned that I was checked in July at another hospital, but he said he would prefer to check again as he could see the problems with my eyes. By the way, I went to the appointment wearing no makeup so that he could see how exhausted I was.

I did this when I was diagnosed, had been seeing the doctor for months and it was only when I went wearing no makeup that she could see how exhausted I was, so I thought I would try it again and it worked - a tip for you perhaps?

He said he's going to review my whole case in case they've missed something and I might have to have the TRH test done again and perhaps a Synacthen test for adrenal insufficiency.

He insisted that his preferred treatment for me is levothyroxine. He's written me a script or 75mgs (I was on 100mcgs before I stopped it). I only agreed to it to get the tests done.

He said I can phone him and he will speak to me if I have any problems - gave me his secretary's extension number (not much use really since she never responds), but it was a gesture. I think he's embarrassed that I've been hypothyroid 4 and a half years and it's never been stable despite being under their care for 2 and a half years. He said he'll see me in 3 months.

This is the same endo who told me that because I had an auto-immune disease doesn't mean I'll get others!!! He said if that was the case, his waiting room would be full of people with auto-immune diseases.

I've got Hashi's, Graves, Hypopituitarism. I'm having a 24 blood pressure monitor next week because my BP is now raised (it's always been low) and now I'm pre-diabetic. He's a diabetes doctor and couldn't see it on the blood results that I gave him - it was top of the page!!!!

I gave him the Dr's pack on LDN and he said he'd never heard of it, but would read the info - don't know whether he will.

I really don't know how to feel after today's appointment.

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  • Oh forgot. I had a massage this morning before my endo appointment and the beauty therapist said I was really hard to massage - my legs were really sore. I think it's because I have mucin. I'm hoping that massages will help with this.

  • What is so sad is that these are the so called experts. I know there are some good Endo's out there but they are the exception rather than the norm. Well done Rita-D for sticking to your guns and for having the foresight to take information with you to try and educate him. It is uplifting to hear about someone battling forward despite this horrid disease, you give me hope, many thanks.

  • Thanks cjrsquared. I just want to feel well. I'm sick of feeling so exhausted and because I look OK to my family, they think I'm just moaning. I live on my own, so they don't see that I fall asleep in the chair everyday when I get home from work, then struggle to sleep at night and get up in the morning.

    They see the weight gain and think I'm overeating - which I'm not and a recent NHS check showed my cholesterol level as exceptional which proves I'm eating well.

    I had a list of symptoms as long as your arm, but he really wasn't interested. I think he did all the tests because he knew that they shouldn't have left me on my own for 14 months, especially given I have antibodies for both under and over active thyroid and Hypopituitarism too!!! They should have been carefully monitoring me according to the guidelines.

  • The last Endo i saw a few weeks ago, (who is giving me T3 to try so I'm very happy) said, "I suppose that I should examine you," then said almost to herself, "I don't really know what to examine!" as you can imagine I was filled with confidence in her hearing that one, the examination turned out to be looking at neck and checking torso for dark patches. I just thought it was a bit bizarre, like err I don't really know what I'm looking for but I'll have a look anyway, it felt like me trying to fix the car, no idea what I'm doing but what the hell I'll have a stab at it, I mean what could possibly go wrong.!!!!

  • OMG!! God help us all!!! What on earth???

    I spoke to a GP yesterday and said I was worried about the pituitary hormones and I noticed that Prolactin level had come back out of range. She said that's OK, they're coming down!!! Under range Prolactin level means that I have hypoprolactinaemia!!!

    She rang me back this morning and left a message to say that she has reviewed my file - apparently my medical problems are very complicated (she told me from outset that I didn't need referring to an endo as she could easily treat me). Then referred me anyway when she couldn't. What a waste of time.

    Anyway, she now says that she can understand why I am worried and that it's really difficult to give an off the cuff view when she hasn't fully read my notes!

    She very kindly told me that she's going to discuss my case with the doctor that I'm seeing next week so that he's fully up to speed!!!

    It's very worrying the lack of knowledge that all doctors seem to have.

    She admitted today that the endocrine system is very complicated and that she struggles to understand it!!! OMG, what chance have we got?

  • Please can you describe the achilles tendon reflex? I looked on Youtube for it! And all I could find was something that no doctor has ever done on me, and when I tried to replicate it, couldn't get a glimmer of a reflex!

  • Even my Acupuncturist tests my achilles reflex!

  • No-one has ever done mine, and I was diagnosed with thyroid probs in 1987!! Sen many endos since, but they're all pretty dismissive and more interested in diabetes. They just don't / won't take in how much this can affect our lives. Since levo seemed to stop working (I felt incredibly ill) 2 years ago, the only thing to help me has been T3, which I'm buying myself.

  • Exceptional cholesterol levels don't show you're eating well, actually. Cholesterol is made in the liver. If you eat less cholesterol, the liver will make more. If you eat more, the liver will make less.

    But, do I deduce from that remark that you are eating a low fat diet?

  • No, I'm not eating a low fat diet. I'm eating a diet with good fats like some nuts, pumpkin seeds and avocado.

  • OK. Good. :) But it still has little to do with your cholesterol level.

  • Yes eliji, the same issue over here. He didn't examine me at all.

    I had a list of symptoms as long as your arm. He never even touched me. Didn't take pulse or blood pressure. Wasn't interested that I've got to have a 24 hour BP test. He's a diabetic/thyroid endo and he wasn't interested in the fact that I'm now pre-diabetic either!!!

    He only really looked at me properly when I mentioned my eye problems - but he did at least say he thought there were problems with them and best to get them checked again. The opthalmist that I saw in July (when my eyes were worse) said they were OK. My Dr referred me for that appointment without really looking at me either. They're all too busy looking at their computers and proving they're right than actually looking at the patients and discussing their symptoms.

    I had a massage this morning and the beauty therapist said that I was difficult to massage - my legs are so solid and sore (I think that's mucin). I mentioned it to him, didn't even acknowledge that it could be a problem.

    I really have no faith in most doctors these days.

  • My GP had never heard of mucin either.

  • This wasn't a GP though. This was an endocrinologist - a "so called" expert!

    I spoke to a GP this morning before I went to the hospital and discussed briefly my test results, I said I was worried about prolactin levels as I have hypopituitarism, she said not to worry they've come down!

    They were in range, but now they're below the reference range so I have hypoprolactinaemia, which is a rare condition of the pituitary gland!!! I give up with the medical profession - they don't know anything!!! Educate yourself so that you can educate them!

  • You are right there Rita.

    Double shocking that an endo doesn't know what mucin is *smh*.

  • Have you had a scan for a pituitary adenoma? Mine was picked up by blood tests for a different specialist. My hormone issues had been swept under the medical carpet for nearly 40 years.

  • Hi Leverette,

    Yes I had an MRI scan in July last year and it was clear. They discovered my pituitary issue on a TRH test in July. Saw a registrar in October and until yesterday haven't been seen since, so I've been self-medicating. They only tested when I kept insisting I felt good and my TSH was through the floor and they were insisting I was overmedicated!!!

    They just don't listen!! Sorry it's taken all this time for you to be listened to.

  • I was told I was overmedicated on thyroid extract. The endo I saw didn't understand what NDT is. Aaargh!

    Thank heavens for the knowledgeable folks on this site!

  • I know. The endo's told me to go on levo as he can't monitor me on NDT. He wouldn't accept that it was the preferred treatment for nearly 50 years - kept shaking his head at me and saying it's not licenced. Then he said he can't prescribe T3 as there was no proven efficacy for it.

    I told him it was because of the price that big Pharma have increased the price to over £400 per month, when you can get it abroad for a few pence! He wouldn't have it, kept parroting about no proven efficacy. I told him it was amazing that all those people are doing well on it and that simply a few months ago it was able to be prescribed.

    Did you see the news today? Pfizer have been fined £80m for overcharging the NHS for an epilepsy treatment!!!

  • What tosh!!!

    I've found NDT great, & seem to be doing just as well on cheap T3 only. I'm sure you could print numerous papers from links posted on here, but he'd probably stick his head in the sand rather than enlighten himself!

    £80 million is chicken feed to big pharma, but hope it sets a precedence for other drugs, especially T3!

  • I agree. He probably wouldn't take any notice of anything I gave him.

    I know the fine is paltry for big pharma, but hopefully it sets a precedence and we may get a challenge on T3 - we can only hope!

  • I told him he would feel very differently if he suffered from thyroid disease!!

  • Honestly some so called Doctors! Make me so mad! Is it so bad that we just want to get better? It's like they think we are mad! What does LDN stand for?

  • LDN = Low Dose Naltrexone.

    Naltrexone is a drug that has had a couple of uses over the years. It was/is used to help people overcome opiod and alcohol addiction.

    It turns out it also has benefits (for some people) at much lower doses (about 1/10th what would be prescribed for addiction), in patients with chronic pain, inflammation, autoimmune diseases.

    en.wikipedia.org/wiki/Naltr...

    en.wikipedia.org/wiki/Low-d...

    I've never taken it in any dose, so I don't know much about it.

  • Low Dose Naltexone. It was used at higher doses for drug addicts, alcoholics and aids victims. It encourages the body to produce endorphins, which help the body to regulate it's immune system. I've only been on it for a month, so the jury's out yet. I want to try to regulate the immune system to prevent future auto-immune diseases.

  • Well done for challenging him and letting him know how unimpressed you are with their treatment. They should be ashamed of what you've had to put up with.

    I agree with you on the autoimmune conditions, how can he possibly say that just because you've got one it doesn't mean you won't get others. I've got several too.

    If you are pre diabetic watch out it might well be worth tacking that before it gets any further.

    I was given three months worth of steroids to kick start the treatment for my inflammatory arthritis - I've now stopped the steroids and moved on to hydroxychloroquine - anyway the steroids tipped me from being prediabetic into T2.

    Fortunately I was taking part in a five year pre Diabetes study which had a really thorough annual medical and the T2 was discovered almost as soon as I tipped from prediabetes to T2.

    I got the usual 'eat carbs with every meal' diet advice - totally useless because any sort of carbs really raised my blood sugar. If I'd stuck with that advice I'd still have T2. Instead I bought a really good book by Dr David Cavan called Reverse Your T2 Diabetes : A step by step plan and a blood glucose meter, I worked my way through the

    I also went totally gluten free when I was diagnosed with inflammatory arthritis (yet another autoimmune condition!) last September and I've watched my antibodies fall steadily over the year until they were so reduced at my last Blue Horizon test that I checked that I had got the correct results. It could be a coincidence but I'm sure it is the GF diet that helped reduce the antibodies and I'm sure it must be better not to have them.

    I've got Graves disease and my Antiperoxidase antibodies were always high but my AntiThyroglobulin antibodies were really, really high. My antibody results for both tests have always come back written in red ink but not this time. GF isn't difficult and it might be something for you to think about.

  • Hi Fruitandnutcase,

    Thanks for your advice. My blood sugar is all over the place. I've followed a low carb diet for several years. However, I saw a functional health practitioner and she said that a low carb diet wasn't helpful for my thyroid and that I should follow a diet with lots of good fat in it. Never had my diabetes markers tested before so don't know how long I've been pre-diabetic. Never been good with carbs, always struggled to lose weight with Slimming world on green days!!

    I've tried to go gluten free, but really struggled even though I don't eat much in the way of carbs. It's in everything - even things you don't expect!!! I seemed to crave it when I decided to give it up!!! How on earth did you manage it? Especially eating out.

  • Sounds like you are dong the right things. The diet I follow is low carb, high fat. I get my carbs from vegetables although I do eat the odd slice of gluten free chocolate brownie and I eat good fats although I've never been someone who loved to eat fat on pork chops or chicken skin etc.

    I just wouldn't buy/ eat 'low fat' products. It's just a pity that I don't eat bread even if it's GF so I don't eat as much butter as I'd like because I've got nothing to spread it on, I discovered that any sort of grain GF or not really spikes my blood sugar.

    Eating out GF is pretty easy. So many restaurants are very GF aware now. I've got a friend who is coeliac and he says it is thanks to people like me that coeliacs have such a choice these days. Most restaurants have a GF bible. The one in Nando's is really thick, it lists every single ingredient in every dish, then twice I've had a member of staff come to check what I've ordered because my other half had ordered non GF food at the same time.

    Other places have ways of adapting their food - like we went to Waddesdon Manor and their chicken pie became GF by removing the pastry which was obviously just put on at the end. Shame about the pastry but good that they are aware enough not to use gluten products to thicken gravies etc.

    I don't snack these days but if I'm stuck and really want something to eat I'll buy some unsalted mixed nuts and seeds or buy a piece of cooked chicken. Have to say I really miss the gorgeous, enormous fluffy sultana scones that our local garden centre serves but apart from that I've got used to it.

    Like you I didn't realise I was pre diabetic until I was selected for the study. Doubt if it would have made that much difference. I was in the control group for the study so I missed all the good 'help', I got a leaflet to read outlining what I ought to be doing on my own and it wasn't until I hit T2 that I really took myself in hand. I got my book, joined the DietDoctor.com website, did their free weekly course on LCHF eating, bought my blood sugar meter and didn't look back.

    I've lost three stones just by keeping my blood sugar under control, I never counted calories, in fact I never even thought about them. I spent all my life, I'm sixty eight now, going to WeightWatchers, succeeding sometimes, presumably when I cut back on bread and carbs although I didn't realise that was why and failing when I went back on carbs. Now I know what I need to eat and what to avoid like the plague.

    I think the secret of my success was probably giving up junk food, fizzy drinks and fruit and nut chocolate although I still have theodd square of really dark chocolate, that and drinking water and eating nuts and seeds.

    Good luck to you, Tesco sells tons of GF stuff loads of their regular foods are GF so Christmas dinner shouldn't be a problem for you, just read all the labels on everything you want to buy.

  • Thanks Fruitandnutcase for your support. I buy locally sourced meat from our farm shop, but even their flavoured chicken which I've been buying lot of as I live alone and it's an easy meal, has on the label "may contain gluten". It's so frustrating, I've always tried to eat really well, have rarely eaten cakes, sweets etc. and I find I'm pre-diabetic. I did fall for the low fat hype that we were all sold by the medical profession and the diet industry and I feel really miffed that I've improved my diet so much by adding in good fats and limiting fruit and concentrating on healthy meats and veg, and now find I need to go gluten free and sugar free - I rarely eat sugar anyway!

    Seems to me you can't win!

  • Just to agree withthe other person, I have multiple autoimmune problems since childhood starting with my thyroid and was just about to start insulin for late onset type 1 diabeties and my adrenals were failing and had brown marks appearing everywhere. Also had a million other diagnosis that basically mean they don't know what's up including a sleep disorder, pompholyx, ibs, CFS etc etc. I gave up gluten after reading credible medical reseach as was about to give up on everything. The results were incredible, diabeties and all new things completely reversed, thyroid meds dropped, and most other things cleared up. Still having probs with keeping up iron, vit D and b12 but otherwise my life has completely changed and can hold down a job. Not perfect as nothing is going to fix the damaged stuff. I also had massive swollen legs and friends used to mention my non--ankles lol! That all dissapeared too :-) You have to do it properly though including crumbs so new toaster and not a trace amount anywhere. You also have to give it a few months as it can take a fair while for youimmune system to respond and go down. I test completely negative for coeliac but because of the dramatic results and reversal of positively tested stuff and antibodies, they have diagnosed me with something the same as coeliac but diagnostically different but they don't have a name for it yet lol!!! My endo is amazed and luckily, it will help prevent the same happening to my little one who was following in my foot steps. It is well worth a shot. It's really not that hard, most natural food is gluten free - potatos, rice, fruit and veg, nuts seeds, meat and dairy so just go back to basics. It may not be your problem but there is a fair chance it will help and if not, keep looking and trying different things. xx

  • Oh and now I can eat all the sugar in the world lol ;-)

  • and the craving for it goes after few weeks/month and don't miss it all - one tiny amount and i'm back in bed for a few days with blisters everywhere!!

  • Thanks Saggyuk,

    That sounds promising. I'm really glad that going gluten free seems to be the answer for you. I know I should really try it, but I feel a bit overwhelmed by it all and all the advice is that it has to be scrupulous or not even a crumb or it sets you back months. I don't know if I'm able to make that commitment yet. I've tried a couple of times unsuccessfully. I thought it would be easier than it is because I hardly eat anything with gluten anyway, but I've really struggled. I'll give it another go in the new year I think and will see how I get on.

    Thanks for your support.

  • If it helps, apart from the initial six months where my immune response took a while, a crumb or corss contamination only sets me back a day or two now. and many things improved by three months and even after just a month - just some things took six months or longer. It's easier than it looks, honestly- it's just hard changing your habits. stick to meals with rice and potatos (even microwave new potatoes), salad and some meat/cheese, get some GF cereal and bread. Just get everything in most natural form. And remember you can use knorr stock cubes and bisto best gravy - what else do you need lol

  • Saggyuk,

    Thanks for your support. I don't even eat cereal and I don't buy bread, but it seems every meeting we have at work, it's pastries and sandwiches and even if I just ate the filling, it's still contaminated by the gluten in the bread. I know it's just habit and thinking your way around things. I've bought gluten free pasta but I don't even eat pasta much either. I'll just have to give it another go I think. xx

  • Yeah, I've alway's got supplies in my bag if I don't know for sure if there will be anything. You'll always find a banana and other snacks in my bag and often a fall back peanut butter sandwich or a tin of heinz tomato soup worst case scenario lol!

  • I didn't know that Heinz tomato soup is GF. I thought everything packaged has gluten in it! I can see i'm going to have to research much harder!!

  • No, there's quite a lot you can have once you know how to readthe labels. You could always just get the coeliacuk directory and you can just scan the barcodes on your phone and that will tell you if safe or not safe if that would make it simpler at first?

  • I meant sometimes it's easier if you stick to naturally GF food at first until you get your head around it :-)

  • Rita-D what a bliddy nightmare. I would like to think that the endo will now step up to the mark and think before he opens his mouth in future. But I'm an optomist...

    Kudos to you for what you've done and what you said to him - it's an examplar of this wonderful resource we call Thyroid UK's forum. A pox on him and next time he says I'm sorry and spouts a load of malarkey, try the hand in front of the face.

    It makes me feel so wretched because I know my GP's a blunt tool...I share your frustration.

    Strive on ! :)

  • Hi Rapunzel,

    I've always had a healthy disrespect for the medical profession having had a lot of bad experiences with my family members who are profoundly deaf. Have always had to fight the establishment for them. Once took Hope hospital to the Health Care Commission about my brother in law who died in their care - they were absolutely awful with him. It took 2 years and a lot of letters and heartache, but they had to apologise for 9 different incidents and to implement deaf awareness training.

    Not had to fight for myself before. The wonderful people on this site and the info that they have shared, have helped me to fight for myself and although I have struggled to be heard, I finally think he listened to me today because he was apologising for their neglect (not in so many words though) so I think he felt he had to do something.

    We'll see if he puts his money where his mouth is!

    A big thank you for everyone who posts because it really helps people to be armed with information and I for one am truly grateful for the support that I have received.

  • Impressed you took him to task-well done! On of the things I got from this forum was confidence to ask questions and query replies, we need that in bucket loads!!!

  • Hi Rita,

    I feel angry on your behalf!

    I swapped hospital due to so many issues with the first place I'd gone to. The secretary was an imaginary woman, who was always away from her desk, & never answered messages or letters. Contacting PALS might be helpful.

    My new place isn't much better in terms of endocrinology knowledge of NDT & T3, but at least the appointments are when they're supposed to be, & they haven't lost my notes or 3/4 of blood samples.

    Mel

  • Hi Mel,

    It's really sad that I'm not alone in my experience. I think this secretary is imaginary and I think the consultant is aware of that, because he kept apologising. I asked for a copy of all letters that are sent to my doctor. She types on the letter that she has sent me copy, but I never receive it. I access the letters via EMIS!

    The consultant thought that she'd been sending them to me. I only found out about hypopituitarism in August when I view my medical file. I had been diagnosed in October, 2015!!! No one bothered to tell me!

  • The incompetence of these people is quite frightening! Do they have your correct address? I waited 18 months for an appointment, for which I'd been flagged as DNA due to a secretary's error. I had to wait anther 6 months once my GP reported it, once I'd said I was still waiting. The first endo department I went to lost all my notes, several sets of blood tests, & failed to send appointments, or respond to calls & letters. PALS were helpful, & also contacting the hospital to complain, but this didn't make up for two years of sheer buffoonery!

    Why they think it's in our favour to keep knowledge from us, I don't know! Anyone might think we could be driven to self-medicate!

    Mel

  • Blimey, I thought my experience was bad, but your's is dreadful!! It's ridiculous!!! They do have my correct address as the blood forms arrived on Wednesday (too late for a Tuesday appointment) after my doctor left a message on the secretary's voicemail!!! I think I'll pretend to be my doctor in the future to see if I can get them!

    Endo has said I can contact him any time and he will speak to me - trouble is, he's given me his secretary's extension number, so I've got no chance of getting to speak to him as she never answers her 'phone.

    God help us all - we're better off self-medicating, trouble is I've spent over £1000 since March already! Who can keep affording that?

  • That's one thing less to worry about, but perhaps contact your endo via PALS rather than his invisible secretary.

    I was shocked at your financial outlay, but think I've probably spent close to that in the past year, counting more healthy foodstuffs & supplements, At least it's working!

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