Question for people who visit Endos.

[greenginger]

How many of you visit endocrinologists who are specialists in diabetes and not thyroid related endocrinology? How many are weighed or asked for a urine sample? How many of you comply with said sample and weigh in? How many of you are happy with your endo?

[Lifeback]

I visit an endo he is specialist in thyroid. i am weighed but not asked for a urine sample happy with endo at the moment

[Lily905]

Always weighed at endo. I always feel like im in a cattle market

[greenginger in reply to Lily905]

Do you mind me asking if you are weighed for a reason ie for diabtes meds or for other meds or is it just because they weigh everyone? Also is your endo at a diabetes centre? thanks

[Clarebear]

I was weighed the first time I visited my endo, but never again since. I am now about 1.5 stones heavier though

Never had to give him a urine sample.

I am happy with him now, but we got off to a bad start.

[greenginger]

The reason I am asking is that I have been very unhappy with all the endo's I have seen at the local hospital. They are all diabetes specialists within a diabetes centre. Hence they assume that I am diabetic and demand to weigh me and for a urine sample. I have on the last two occasions refused to give samples or be weighed. Which has lead to the nurses being quite rude. Even when I explained I was not diabetic. I am hyper too and so do not need to weighed for any meds.

It just says to me that they do not have a clue how to treat someone with Graves.

BTW I have high blood pressure due to the thyroid thingy and that gets checked too but nothing mentioned about it anyway.

[VintageChick]

Everyone who visits the endocrine clinic I got gets weighed but no one has ever mentioned why or what they do with that information. I have no idea what specialism my endo has but it doesn't seem to be Graves disease as he has no clue who to treat me! I go by what my gp says.

[RedApple Administrator]

I was weighed and asked for urine sample at my first endo visit. I was extremely ill and knew nothing much about thyroid in those days, but even then I queried why I had to give a sample and be weighed. The nurse admitted it wasn't necessary for thyroid patients, but was done as a matter of routine because it was essentially a diabetes clinic. I didn't even get to see the endo in person, only the registrar, and was dismissed after this first visit as my tests were fine. I remember feeling shocked that I could be so obviously ill and yet ignored, as well as feeling hurt that the diabetes patients seemed to be getting plenty of help and attention, yet thyroid patients were not.

I do hope someone will be able to point you in the direction of a good one.

[greenginger in reply to RedApple]

Your experience seem similar to mine. I am due to see an endo next week after a nine month wait. ( I should be seen every 3 months according to my GP). I have waited hours for appointments in the diabetic waiting room only to be forgotten about on two occasions and given a quick 2 minute sit down at 5pm as they were leaving.

I told my last endo how useless they were and I recently saw a snotty letter calling me negative ( really?). No mention of the long appointment waits or the poor service on arrival. My GP has had to harass the department for my latest appointment.

After 2 years on carbimazole as a hyper I dont think I will find a good endo.

[Hidden in reply to greenginger]

GG

Have you had our Endo list lately..!? I have 2 more to add to it on Monday, email me for it and I will get it to you after I've updated it..

[e-mail]

L

xx

[Hidden]

My Endo has a special interest in Thyroid disorders, I saw him privately but have now been transferred to his NHS list. I also see a Rhuematologist on the NHS. I think if you have any hospital appointments they generally weigh you as a matter of course and do a urine sample. Weight gain or loss can be an indicator of underlying health issues so I have always just gone along with it, same with the urine samples. I had a 12 month period where I had blood in my urine and this would not have been picked up otherwise.

There are some good Endos out there who are interested in Thyroid disorders, perhaps as you are unhappy you could ask for a second opinion.

Good luck

Ali x

[greenginger in reply to Hidden]

This would be great if they actually did anything. I had a water infection but the diabetic nurses told me to see y GP instead and as for blood pressure they see it is very high and tell me to see my GP. So what is the point?

[Hidden in reply to greenginger]

Oh dear get a new Endo! Mine was brilliant, devised a plan which the GP now follows and sends me back for further guidance. It was the Rheumy who detected the blood in my urine and although it was the GP who dealt with it he only did this following the advice from the hospital. I think this is the norm, the consultants advise the GP's how to treat.

Ali x

PS It's always worth it if there's a chance you could feel better x

[greenginger in reply to Hidden]

I think it is a bit late in the day, however if I come off carb and then later go hyper again I will definitely go private.

[Hidden in reply to Hidden]

Hi Ali

If you haven't already, please can you email the details for your Endo - thanks!

[e-mail]

L

x

[Hidden in reply to Hidden]

I don't remember emailing you the details so have just sent them through. I would definitely recommend him x

[Hidden in reply to Hidden]

Hi Ali, did you find out what caused the blood in your urine? I have had blood in my urine for at least 3 years and was sent for a cystoscopy and a kidney scan. Turns out I have simple kidney cysts but my doctor seems to think the 2 are not connected and just says this sometimes happens for no good reason. Doesn't fill you with confidence.

[Hidden in reply to Hidden]

Kind of! I think it was just a normal but persistent urine infection which didn't respond to the usual antibiotics. I had various tests to rule out anything more serious and eventually after several courses of antibiotics it just stopped. I was also told that jogging can cause it although this was definitely not the case for me!

[Fruitandnutcase]

I've got Graves too. I see an endo who specialises in thyroid. I have been weighed both times I have seen an endo, on my first visit I was asked to take a sample, I did but no one asked for it so next time I didn't bother and I wasn't asked for one. On my first visit I had my BP taken both sitting and standing but second visit I was simply weighed. My weight wasn't mentioned during my consultation, I though perhaps they used it when deciding how much levo I ought to be taking.

Liz

[greenginger in reply to Fruitandnutcase]

Ah are you on block and replace? Or are you now hypo?

[Fruitandnutcase]

I'm still on block and replace - I was told I will be with the hospital and on B&R for about two years - that was at my first endo visit in February this year.

I was started on 10 mcg Carbimazole at the beginning of December, then I went on to 20mcg at the beginning of January, I saw the endo at the end of February and he gave me 50 mcg levo and said to lay off the carb 'for a few days' but to start the levo at once. Probably because I had gone hypo by that time.

My endo raised my thyroxine to 75mgc at the end of April - by that visit I was taking amitryptiline for the palpitations I was having again and was really cold and sluggish all the time - and because I'm having similar symptoms again - my GP has just given me more levo so that I can alternate between 75 and 100 until I go back to my endo at the end of July and that has made a big difference.

Think the answer to your question is probably ' a bit of both' I'm on B & R but I'm feeling a bit hypo right now too. My TSH is 'in range' but I don't think I am at my optimum level at the moment

Liz

[greenginger in reply to Fruitandnutcase]

Hi I have just seen another thread about block and replace. It is not used very often anymore and is seen by many specialists as old fashioned. How do you feel on it?

[alangardner]

if your specialist is into diabetics you need to request a second options choice to a hospital OF YOUR CHOICE to a hospital that has a department that SPECILISES in endocrinology [ thyroid ] problems ....... then and only then can you get the correct diagnosis and then the proper treatment ...... all this can be done through the nhs system ----- if you need to find out what hospitals [ nhs ] specialise contact louise at admin for the list ..... then you can start at the beginning of the tunnel ...... I can assure you it will be worth it .!!!!!

[greenginger in reply to alangardner]

Alan

I agree with you in principal but when you are really ill, as I was at the beginning, you cannot think or process info. You feel aggressive and non combatative at the same time and too exhausted to make the effort. Then when you do improve slightly you are so annoyed that you got such poor treatment, you feel like ignoring your illness and go into self denial. Finally you think you are near the end of your illness ( this time round) so don't see the point.

It is like the diary of a mad person really!!

[Silver_Fairy in reply to greenginger]

When I was first diagnosed I had an appointment in the Diabetic dept. I was weighed and my BP taken. The next two or three appointments were in the same dept. If I remember correctly it was after I was diagnosed with TED that I was given appointments in the eye dept and the 'Endo's' came over to see thyroid patients. Those appointments I only had eye tests.

The only time I saw a specialist in endocrine problems was at my first appointment. Not impressed as he questioned whether my answer 'no, no thyroid issues anywhere in my known family history' was true! Was he accusing me of lying? No, the problem could not possibly be down to Amiodarone!

The next specialist was a Diabetic one, not impressed by her at first as she dismissed a lot of my symptoms. But after block and replace not working, my refusal of RAI or surgery, she is allowing me to titrate my dose of Carbimazole.

But, again, she does make sure I get tested between 8- 12 weeks each time, and sends a letter with results to both myself and my GP. And because the hospital is quite far I get phone consultations after each blood test.

So, at the moment, I'm kind of satisfied as to treatment, I am now on 2.5mg of Carbimazole and know that I am going to have to fight my corner re antibodies tests before coming off medication or staying on it. And know she will bring up surgery etc again.

[deniD]

I. Never got we'll on block n replace did it almost 3 year felt better long any treatment!

[Silver_Fairy]

Are there any specialists in endocrine problems in your hospital, or just diabetes? I googled my hospital and all the specialists in the department to see what their particular areas are.

[greenginger in reply to Silver_Fairy]

No I checked even the head honcho (who is a supercilious little man) and who I saw once, is not.

He ( the above small man) told me that I would have to have RAI eventually and that was that. I disagreed and never got to see him again. His second in command was a nice man and he is the only one who examined me but never saw him again either. The third one was a rude, dismissive man who talked over the top of me and then told me to leave when I questioned him. Didnt see him again. The last one was a woman who looks like a hippy and apparently usually works in a lab(???).

She was polite enough but never answered my questions and told me that all my illnesses and problems were in my head and not from having Graves. At my third visit I told her she was useless and so I had to wait nearly 9 months for an appointment which is due tomorrow.

The great NHS eh? Even my GPs have been disgusted and they are not much good either.

[tegz in reply to greenginger]

Q: "Told her she was useless" LOL

Great- if only we were all as outspoken and stamped on a few over-protected toes now and then...

Good luck with your long awaited, then GG!

[greenginger in reply to tegz]

Ha she sent a snotty letter tto the GP about me but I never got a copy. Really brave eh? Luckily I saw the GPs version!!!

She stated I was negative. Really? How would she feel in our position?

[Hidden]

If an Endo told me it was daylight outside, I would check my watch and look up - TWICE.

A body of people who cant' see the bleeding obvious staring them in the face, and who then collectively DEFEND their position despite loads of contrary evidence and close ranks to maintain that status quo is something to be very wary of and question everything!

My own personal experience (family and me) makes me seriously question their knowledge even of diabetes and glucose metabolism, and as far as thyroid goes, well that's beyond ridiculous.

[greenginger in reply to Hidden]

Totally agree.

[tegz]

The endo I didn't get along with [I won't expand- as I may not ever have made a junior Dr grade myself] would not consider UAT or the cause of low androgens[irrelevant].

Diabetic clinic- weighed,urinetested and staff wary of taking a 'non PC' line on anything.

Blocked mindset and I felt sorry for the patients and also the people working in such a system.