Just had an awful endo. appointment.

[lucylocks]

Just got back from my third endo. appt. and I have been in tears.

He asked how I had been and told the last few weeks I had not been very good.

Ran off my list of symptoms, fatigue, even after sleeping 10 plus hours, aches and pains, constant anxiety,

some days feel depressed, weight gain, pins and needles, tingling, lip and cheek numbness,

before I had chance to finish, he said oh dear and do you think its your thyroid.

I replied well yes but I think I need to sort my nutrients out, iron, ferritin, folate, B12 and Vit D as from the research I have done I know they need to be in the top quarter of the range for the thyroxine to work properly.

( I am supplementing with Vit D but stopped all other supplements to have the Active B12 test and as the result is in a grey area, I have kept off all supplements as I was going to ask endo if he would do the MMA and Homocysteine tests).

Even before I finished saying about the nutrients having to be in the top quadrant he butted in saying I know which research you mean and I don't agree with it. He then said I think I will write to your G.P. for you to see another endo. for a second opinion, and discharge you. I was taken aback by how quickly he made this remark.

I said well I will see someone privately to which he replied, don't waste your money as they all think the same as me. So what's the point in me getting a second opinion then?

I said I wondered if some of my symptoms are from low B12, I don't know but they are not to do with your thyroid he said.

My husband who had been sitting quietly said, well what is it then as something is not right as she is up and down like a yoyo. It was at this point my tears started and on seeing this and as though he was doing me a favour he said, I will ring your G.P. this afternoon to arrange about seeing another endo..

I said how are you convinced its not my thyroid, he said you are on levothyroxine, we increased your dose which you said did not suit you (on my fist appt. he said to increase from 100 to 150mcg but I decided to increase to 125 first then 150 and on the 150 I got severe palpitations and internal shaking so cut back to 125mcg and on this felt O.K. but on my last appt. I saw registrar who said my TSH was suppressed so said to go back to 100 when I said I felt better on 125 she said oh well alternate 100/125)

I explained all this to endo today and he said again symptoms are not because of your thyroid.

I ask about T3 and NDT and he said we don't use them.

I got up and said that is all there is then levo, everything is so black and white with this isn't it and said to my husband, come on I knew this would be a waste of time and with that we walked out just as endo. said I'm sorry if you think it has been a waste of time and gave me my discharge letter.

Before going at the reception desk they gave me a sort survey to fill in after the appt. but I was in such a state I just wanted to get out. I think I will fill it post it back to them to say what I really thought of my appt.

Recent results

TSH 0.10 range 0.35 - 4.70

T4 14 range 7.80 - 21.00

T3 4.4 range 3.8 - 6.0

Ferritin 65 range 15 - 300

Folate 9 < 3 suggests insufficiency

Iron 16 range 8 - 34

B12 394 range 180 -1130

Active B12 69 range 21.1 - 165

Vit D 71

I am seeing a Nutritonalist next week who looks and adrenals and gut issues so will hold off my supplements until then, but apart from that any comments and advice would be really appreciated.

Thank you rant over.

browny

[puncturedbicycle]

Hi browny.

I'm so sorry to hear about your endo. It seems you got one of the ones we all dread. It may not seem like it now, but he has probably done you a favour so you don't have to continue to wrangle with his bull***t and weep through your next x-number of endo appts while wasting time feeling ill all the while. But I think what we all resent is being kicked when we are at our most vulnerable and needy, and none of us deserves that.

I wept through my first three appts and eventually he sacked me because I'd been seeing a private doc (partly because I unexpectedly found myself abroad for most of last year and partly because I was ill and only seeing nhs endo twice a year, so I don't know how he would have made me any better on that schedule). It was a shame because he wasn't even the worst of his kind and it would have been useful to get my t3 through him but even though he recommended my gp prescribe it for me, gp refused and endo was completely toothless and basically shrugged and said I couldn't have it after all. Spectacular waste of time for all concerned really.

On one hand I don't mind them self-selecting as it keeps them away from those of us who know better and deserve better, but I do object to paying his excessive salary via my taxes, as should we all. I wish the Daily Mail was as concerned with freeloading doctors as it is in immigration and benefit fraud. I reckon docs cost more and what they do is perfectly legal.

Good luck with your nutritionist and continue to persevere until you get the treatment you deserve. xx

[maack56]

I take Herbalife Formula 1 - this has all the nuturients you need on a daily basis and is safe.

[lucylocks in reply to maack56]

Many thanks for your reply, I will check this out. Do you feel better for taking it.

[lucylocks]

Many thanks for your reply.

Yes he obviously didn't like me having some knowledge and questioning him.

I totally agree with you about paying his excessive salary.

I will see the nutritionist and take it from there and start to look at self medicating..

Thanks again your reply it is very much appreciated.

Best wishes browny.

[puncturedbicycle in reply to lucylocks]

No probs. Lots of us have been there. I remember well how degrading it felt. You deserve better. Glad your partner was there with you. xx

[beaton]

Hi Browny,sorry you had a "normal" endo visit. I know you can't tell me who you saw but could you tell me which hospitol or area you live in? x

[lucylocks in reply to beaton]

Hi, I will send you a PM

[beaton in reply to lucylocks]

Thank you. xx

[Clutter]

Browny, I'm sorry it was such a useless consultation. You are actually better off being discharged from one who has so little empathy and doesn't have the wit to appreciate that levothyroxine does NOT suit everyone.

I would accept a 2nd referral. The endo who discharged you has admitted he lacks the skill to make you well. That's his failure, not yours.

Not all endos are like the one you saw. I was going to fire my endo after half a dozen useless consults but after a heated discussion at our last consult and my admission I was self supplementing T3 he had a volte face and turned into a human being and became very helpful and supportive, even prescribing T3 which he doesn't feel has adequate published research to back it's efficacy.

The nutritionist may be very helpful with diet and supplements which in turn may improve your health..

[lucylocks in reply to Clutter]

Many thanks for your reply Clutter,

Yes I feel he has done me a favour, my husband said forget about him now, there is no point seeing him anyway if he cannot or is unwilling to help.

My daughter has seen the nutritionist and was very impressed, she did the adrenal saliva test for her which came back as low cortisol and is prescribing for her and also a stool sample which shows she has candida, again she is going to prescribe her something but she is just waiting for the treatment at the moment so I do not know what is.

I think she will look at my adrenals, gut issues and supplements so I will take it from there.

If I find out anything from her that may help others I will post on the forum.

Best wishes browny

[Clutter in reply to lucylocks]

That would be good, Browny. Is the nutritionist a qualified doctor? If so, I wonder whether she would be able to prescribe T3?

[lucylocks in reply to Clutter]

Hi Clutter,

She trained in Poland and then qualified as a Nutritional Therapist at the College of Naturopathic Medicine, London.

Not sure if she can prescribe T3 but I shall ask the question, she may know where to get it from. I will let you know.

[Moggie]

Did he not even suggest that some of your symptoms could be related to your very low iron levels?

One good thing is that most people have to fight for a second opinion but you will get one with no problems - just make sure it's at a different hosp or you will be sitting in front of one of his mates.

Sorry you are so upset - I hope you play on his conscience tonight while he is sitting in his big house counting all his money.

Chin up and try not to let it upset you too much - easy to say I know and much harder to do.

Moggie x

[puncturedbicycle in reply to Moggie]

Yes, this is a good point Moggie.

browny, do you know if your gp will refer you to an endo of your choice? It isn't failsafe but might get you a better result if you ask to be referred to someone on the TUK list.

[lucylocks in reply to puncturedbicycle]

I thought if I went private the G.P. may refer me to someone of my choice, the only thing is there is no one on the TUK list in my area.

I live East Yorkshire

I know Dr. P. comes Near Wakefield every few months but I am sure he will have such a long waiting list

I may ring to ask when he has any appointments.

Hope you are keeping well.

[puncturedbicycle in reply to lucylocks]

I could be worse thanks.

Okay, when I was referred (gp insisted because she said I 'twisted her arm' for levo ), I asked if I could choose the endo and gp said yes, fine, just let me know soon. I think they rang me again later that day or maybe next to ask if I had decided. In the meantime I hightailed it over here and got a recommendation (also not on the TUK list, in the end a curate's egg, but that's the chance you take).

If you were asking for my advice I'd say do a post and ask for someone to pm you to recommend an endo local-ish to E Yorkshire. Even if they're not on the TUK list, if your gp insists on referring you again, you may fare better with a recommendation than with any old endo. xx

[lucylocks in reply to puncturedbicycle]

Thanks, yes, I will do a post asking for PM

[lucylocks in reply to Moggie]

Many thanks for your reply Moggie,

He did not suggest anything, my husband said what do you think it is then, he said I don't know, hubbie then said well it must be something as she is up and down like a yoyo, well its not your thyroid he replied. When I mentioned the nutrients this is when he said he didn't believe in it.

Moggie when you say my iron is very low do you mean the iron level itself or the ferritin or both?

I shall go into the surgery tomorrow to ask about the second opinion as like you say it is no good seeing someone at the same hospital as he even admitted they all think the same as him.

I have settled down a bit now and hubbie is making my tea, LIVER would you believe.

Many thanks again for your reply, hope you are keeping well.

[Moggie in reply to lucylocks]

No your iron level - your ferritin could be a bit higher but your iron level is below the reference range at 16. When you speak to your GP about a second opinion ask him/her about your iron level.

Moggie x

[lucylocks in reply to Moggie]

Sorry Moggie, typing error,

reference range is 8 - 34 for iron so level of 16 is in range.

I'm not thinking straight .

[Moggie in reply to lucylocks]

Understandable - no worries.

Moggie x

[Moggie]

Or if you can't travel do a lot of research regarding endo's in your area and pick the best one, as long as it's a different hosp.

Moggie x

[lucylocks in reply to Moggie]

Yes I will do my research this evening.

[Fruitandnutcase]

Poor you - what an awful visit. I know its tough and its a hard way to do it but you will be much better finding yourself a decent endo, that one sounds a really unpleasant creep. Consider it a stroke of luck that he decided he doesn't want you as a patient.

Just make sure that he doesn't work at any other hospitals you might end up going to, I don't know about endos but I know some other consultants pop up in different places.

[lucylocks in reply to Fruitandnutcase]

Many thanks for your reply, Yes I will look further afield, there are only two hospitals in the area so I am sure the same endo's cover both.

I will do some research this evening and look at endo's on TUK list and may also ring Dr. P clinic.

Best wishes browny

[chihiro]

Nothing to add but just wanted you to know that I am very sorry you had such a horrid appointment. The one that left me open jawed is the fact that he says he doesn't believe in nutrient deficiencies causing your symptoms. What a grade A fool!!

Keep smiling and hug your hubby cause he was trying to fight your corner, he's a keeper

[lucylocks in reply to chihiro]

Many thanks for your reply, yes as soon as I mentioned the nutrients he had made his mind up he wanted to refer me for a second opinion.

Yes he is a grade A fool.

Hubby is not usually that vocal but he was even gobsmacked by his attitude, so chipped in his penny worth but it just feel on deaf ears.

[tilly83]

sometimes it would be helpful to have a list of endos available to us with remarks made by each one as objectively as possible, if they are happy to do surveys of how the hospital does surely it would be good for us to have our endo survey which we could refer to. I am appalled by this man. If you ever see him again, TAPE him. It's so easy to do, you can say it's so you can refer to what they say later, it would make for a very different appointment. Glad you took your husband, always take someone with you too xxx

[chihiro in reply to tilly83]

Oh I so agree with you tilly! I wish that gps and endos and well doctors in general were all up on some kind of website where people could review them. A bit like going on amazon and reading the reviews before going ahead with a purchase I know that we can have a list of sympathetic doctors from TUK but an actual website that allows people to speak their minds would be sooo great Then I bet they wouldn't be so quick to dish out such horrid and insensitive comments to patients because everyone would know about it. Ahhhh a girl can dream.....

[tilly83 in reply to chihiro]

I think there are concerns about libel but it could be done in such a way (like their survey) with questions next to endo like 'How comfortable did he/she make you feel' with just space to tick a, b or c and if you want to say anything it has to be postive. People will make up their own minds if nothing is written down. Not sure how could go about this but should not be that difficult....

[lucylocks in reply to chihiro]

Hi

I have just replied to tilly83 re the website.

You can enter name and hospital and they come up with reviews for that person.

There are a lot on there with no reviews at present.

I obviously left a bad review and I have not received a confirmation email yet to say it is ready for view so it makes me wonder if they will put it up or not.

Watch this space.

[lucylocks in reply to tilly83]

Many thanks for your reply,

I have no intention of seeing this endo again.

My husband said to forget about him now which I intend to do. They gave me the survey to fill in

but I never did it as I was in such a state I just wanted to get out. When I looked at it last night there is a website to go to and fill it in there.

I have done just that, I had to give my email address and it said they would email me with confirmation when it has been entered on the site

for viewing, I have not had that email yet. I wonder if I will ever get it.

Best Wishes browny

[tilly83 in reply to lucylocks]

There are other avenues of complaint via NHS. In future it is best to write down what is said as soon as possible after the event, time and date it. This counts as legal document. Myself and husband once had run-in with GP on holiday with treatment of our daughter. We wrote up notes outside centre (we are both journalists) called NHS direct and regional office. Made formal complaint. GP was interviewed and had to write us a letter of apology. We did it because if he has been reported before will be taken more seriously the next time. I had overheard in surgery that patients avoided him like plague. We literally wrote down what was said and how we felt. I would never ever see specialist without my notepad. I don't know where you live but I am in Bristol and the two endos I have seen here have been excellent. xxx

[lucylocks in reply to tilly83]

My daughter said to make a complaint but my husband said he did not think it would do any good.

The endo looks about retiring age

maybe that's why he thought he could treat me the way he did.

I live East Yorkshire so quite away from you but many thanks for letting me know of the two excellent endos.

I have received two recommendations from members of two endos in Yorkshire so I am looking into this

Best wishes browny.

[tilly83 in reply to lucylocks]

good best to go with new ones and take your notepad x

[crimple]

I know there is someone mentioned at HRI I will PM you

[lucylocks in reply to crimple]

Thanks crimple, that would be great.

[Littlewitch]

This sounds just like my appointment , I have been on Levo for 12 years and b12 for about 4 and still feel awful , my GP referred me eventually . I was so full of hope but like you I was told that what I'm on is the only medication available and so my symtoms were not due to my thyroid and he didn't believe in any other treatment and to go away and get on with it , I must be depressed . I was so upset and angry I cried for days . I started questioning if I was depressed , I took a few days to shake it off . My GP is in agreement Levo is all anyone could ever need so I too am doomed . At least were all in this together x

[lucylocks in reply to Littlewitch]

Hi Many thanks for your reply.

So sorry to hear you also had an awful appt.

I have received two PM's suggesting two very good endos so I am looking into this.

They are both in Yorkshire, if you are anywhere near and would like the names let me know and I will PM the details.

If not in the area why not ask on the forum for recommendations in your area so members can PM you.

We should not have to suffer.

Wishes the best of luck browny

[crimple in reply to Littlewitch]

Can any medic explain why your thyroid produces T1, T2, T3 and T4 and calcitonin but you "will be fine on levo" which is T4 only?!!!!!!!!!!!! Why would your body produce the other stuff if it didn't need it?!!!!!!!!!!!!!!!!!!!!! Oooh I am so cross on your behalf!

[wombatty in reply to crimple]

T4 is converted to T3 in many different organs, so doctors assume all you need is T4. However, that's not the whole story. Check out the article at <chriskresser.com/low-t3-syn... and the links at the end.

[lucylocks in reply to crimple]

I know crimple to them T4 is the be all and end all, the endo said that T4 is all he will prescribe. I read I think on this forum even hiccups have 3 different treatments available on the NHS and hypo only one. Ridiculous isn't it.

Did you PM me the details of the endo at HRI you recommend as it has not come through.

Best wishes browny

[nezzykins]

oh branny I can sOO empathise with you. sorry to hear that you were treated so disrespectfully. In my view, and my own experience, I have had some very abrasive comments made to me following a private consultation with an endo. I paid £160 in Spire 2 yrs ago. He took my BP which was high for me, along with tremours, anxiety /depression and was living in a brain fog with short term memory problems. He did not check on any previous blood results that he was able to do via link into my previous blood results, and then was to;d that there was NOTHING WRONG WITH ME. Apart from the old chestnut...anxiety depression. I payed another £80 to go back and insisted that there WAS something very wrong with the way i was feeling. He then then decided to repeat a thyroid profile and cortisol blood levels following a dose of steroids, and I then went back to see him on NHS. Aha... he said....you have been over replaced, swung the computer towards me and highlighted the past 3 thyroid profiles, which had not been read properly by my own GP. He reduced me to 75mcgms for which i had done myself in desperation due to the tremendous heat and missed heart beats continually. My own common sense told me to experiment with the dose and i told him that I had already lowered it as i did not believe that the dosage was suitable ( due to the signs and symptoms of over replacement). Well.....he said, you did the right thing!!!! What????? Now I have paranoia with ALL doctors. What the hell is going on???? Can Doctors be monitored for substandard practice? I am a trained nurse 28 yrs but now retired due to back and neck slipped discs, Graves and GED I would have been struck off for negligence as a nurse. What I have heard of other peoples experiences on here, I now know that unfortunately for others, I am not on my own. I think that it is disgraceful. How can they get away with it???? Im seriously infuriated by reading these members testimonials If I had not been through similar experiences, they would seem hard to believe!!!!!!! Do we all have the word " doh" written on our brows??? What can we all do to stop this madness?? Its not ethical I feel for you all as well as myself xx

[HarryE in reply to nezzykins]

It's not, definitely not. I work in the NHS too, and now have to seriously consider making a complaint against a member of staff at my hospital (endo). Really tricky, not really sure whether to or not, but he has not only been rude and arrogant, but has also put incorrect information in writing to me and my GP.

[lucylocks in reply to nezzykins]

Sorry you have had such a bad time as well, it's disgraceful how we are treated, something has to be done about it I agree. Even is you see an endo privately like you did it does not guarantee you will get treated right (we should all be treated right whether it be through the NHS or private)

Everything seems to put down to anxiety and depression and the medics do not want to look any further.

Best Wishes browny

[Littlewitch]

Let us know how you get on x

[lucylocks in reply to Littlewitch]

Yes I will do. x