What!! Endo just called me-i dont think he has a clue.

[Rmichelle]

Hi all im left feeling flabbergasted- he called to say that i can titrate my dose down to 5mgs of carbimazole now which i think i need anyway as my tsh was 3.77 but within clinical range he said but i said not enough for me to feel well own. I know i have to get all bloods done this week again as hospital lost them when i went 10 days ago

What im concerned about he just stated on the phone that tpo and and tgab are not a definite result of hashimotos(as you know i was originally hyper and hashis in july) and also a ultrsound scan is not also a reliable indication of hashis!! Even though they found nodules on thyroid and thickening of isthmus and notes said within keeping of hashis. He still refuses tsi test as he said no need as he said no definite test tsi- most people have both immune diseases anyway -so he said i have both now. No need for another blood test he will work from tsh-wot!! but i dont care what he wants and i think i need to see new blood work as i have not had full panel shown due to tests being lost for,so its been 6th week now since ive been on 10mgs. I titrated dose myself to 7.5mgs 3 days ago.

I just feel he does not know what he is talking about and not inspiring any confidence.

I know ive complained about him before on this forum but thought ive got appointment made to see him 5th december but i really do not want to see him- anyone else thinks he is a idiot please feel free.😠

[SlowDragon Administrator]

Sounds like trying to cover his *** because might have misdiagnosed Hashimoto’s as Graves

Can you get TSI antibodies test privately if it’s not been done

It’s rare to have both Hashimoto’s and Graves together

[Rmichelle in reply to SlowDragon]

I have had tpo done and confirmed hashis but put on carbi due to being hyper in july and tests shown hyper levels throught but not mega high.

Its just that he says there are no such tests that really confirm any immube disease whether its tpo or tsi, he saysbi have both now - i did say i disagree because you havent tested tsi so you cant assune i have it. He says "you probably have it so no test.!! I just think he is talking through is @rse. 😕 i dont want to see him again and a trained chimp could do a better job. Did consider doing a private test but that is out of the picture at present what with christmas approaching and with most gps and endos just boo hoo private tests and wont even look at them. I want to request before hand that i see someone else, not sure how to do that yet.xx😊

[ITYFIALMCTT in reply to Rmichelle]

It might be worth seeing if BH (if they were the test people involved) have a special offer for Black Friday that might make it more affordable.

[Rmichelle in reply to ITYFIALMCTT]

Yes thankyou i will check blue horizons- its annoyed me to think i have to travel on a train and then catch a taxi, then wait around for a good hour to be told babble by a diabeties consultant who knows very little.😊

[SlowDragon Administrator in reply to Rmichelle]

You can have high TPO and TG with Graves

But Graves only has high TSI

thyroiduk.org.uk/tuk/about_...

[Rmichelle in reply to SlowDragon]

Ooh that makes sense then-i understand - i have been told its hashis by doc and endo and my scan says in keeping with hashis- you have made it clearer thankyou- so regardless what he says i really need this tsi even if its for my own peace of mind! 😊

[SlowDragon Administrator in reply to Rmichelle]

Yes. I would suspect it’s just Hashimoto’s

Which is why he doesn’t want to test

It would prove you have had incorrect information and treatment

[Rmichelle in reply to SlowDragon]

He disregards hashis and due to being hyper i started on carbi but now bloods 3 weeks ago were looking more hypo so he has titrated dose again now to 5mgs.x

[Clutter in reply to SlowDragon]

SlowDragon,

She hasn't had incorrect treatment. She was hyperthyroid so Carbimazole was the correct treatment and is being titrated according to thyroid levels. Hashimoto's can cause transient hyperthyroidism. If Rmichelle doesn't have Graves in tandem it is likely she will become euthyroid for some years before she develops hypothyroidism.

[Mstiles in reply to SlowDragon]

I’m sorry I’m unclear on your answer. Do you mean that if you only have TGI antibodies but NO TPO antibodies that is definate for Graves?

I’m in the same situation as Rmichelle

[Mstiles in reply to SlowDragon]

Hi, I’m not understanding your answer, sorry, do you mean that if you only have TGI antibodies and no TPO that is definate for Graves? If you have both kinds of antibodies how do you tell what your diagnosis is?

[Rmichelle in reply to Mstiles]

Hi mstiles i have tpo antibodies which i believe is hashis but tsi will only indicate graves but endo will NOT do tsi- he has said there is no definite test so he is saying i do have graves probably but i dont think he has a clue regards to testing antibodies. It is confusing- endo has titrated dose again today to 5mgs now but i cut it down on saturday to 7.5mgs and feel slight improvement already.

I t looks like i will have to get tsi done privately as he is not going to. You are very similar to me and i think you do think am i on the correct meds but i am just getting on with it.😊

[SlowDragon Administrator in reply to Mstiles]

Here's two good links

thyroiduk.org/tuk/about_the...

labtestsonline.org.uk/under...

[Rmichelle in reply to SlowDragon]

Thankyou slow dragon.

[Mstiles in reply to SlowDragon]

Thank you slow dragon. I missed reading that. I guess why that’s endos must ignore the antibody levels because they can be present in both hyper and hypo and fluctuate so much.

[Mstiles in reply to Mstiles]

Mostly ignore, not must ignore

[SlowDragon Administrator in reply to Mstiles]

But to get better we need to get antibodies right down

Strictly gluten free diet, very good vitamins and high enough dose of Levo to lower TSH right down

[Mstiles in reply to SlowDragon]

I’m mostly gluten and sugar free now Slow Dragon. My endo has said nothing about Levo, only diagnosed me with Graves. I have found an integrative MD and I think will be better.

[SlowDragon Administrator in reply to Mstiles]

Does need to be strictly 100% gluten free.

Even watching for cross contamination

Eg toaster, butter dish, jam, honey etc

chriskresser.com/the-gluten...

[Rmichelle in reply to SlowDragon]

Yes thats my biggest bug bear my hubby just digs his knife in the butter tub, slaps it on his bread and then- iin goes the bloody knife again!! I cant use it then. I have now got myself a butter dish and its just for me, also got my own saucepan and oven tray.😊

[Hidden]

Look him up on the web - see where he qualified, if he has a private consultancy - you may find out where he practices. There are a number of endos who are not concerned how the patient feels - expect he will have a face book page and is after advertising his services - I am so wary of certain GPs who devote narcissistic splurges on the web and also Consultants who are not within a private group . If I were you I would send my blood tests to blue horizon - and see what they are.

Quite sure that other members will recommend a private test company, the results of which can be analysed by the administrators If an NHS consultant s not doing a full range of tests, this is not reassuring for the patient - he is relying on the TSH result. Will have to find info on new research on TSH. Mercola's site is very interesting, and contradicts other older information.

Your endo is right about you having two autoimmune disorders, but he is saying there is no evidence to confirm hashimotos disease - the other disease, coeliac disease ,is also allergy related -

gluten is the main culprit for most people . What you need to know is are you being weaned off

the carbi, so you then are hypo enough to go onto T3 and 4. Mercola's website explains

the importance of free T2 3 4 and it's link with TSH. What he should be telling you is why

the coeliac disease is affecting you at the same time as your thyroid and is the gluten free

meant to kill tow birds with one stone!

[Rmichelle in reply to Hidden]

Thankyou gadgrantgg that is a good idea im going to look up consultant now.x

[Rmichelle in reply to Hidden]

My endo is a registrar not a consultant - so he is still in training?

[ITYFIALMCTT in reply to Rmichelle]

I can't link the pdf but if you to to

bma.org.uk

and put

doctors titles

into the search box - you'll see the pdf that explains what the various titles mean.

[Hidden in reply to Rmichelle]

yep - it may take as much as 7 years to train - that's why we may get

the underling - who may be proficient but can be less experienced, and

get way with confusing the patient, and misreading or interpreting test results.

That is the difficulty with a change of drugs over the past few months, you have turned upside down - there are other people who have been on drugs and have had the same scary problems with no help or guidance about the symptoms which make you afraid as one minute you can function and the next - you are spinning. If you look at some posts of people just going on carbi or levothyroxine

you might find similar experiences to yours. With hormones each person is different - you had autoimmune disease, but this was slowly diagnosed -

don't know how you coped with all those scans only to be told you should go gluen free! Perhaps you should have a private consultation - I know my dad did

after pneumonia - he was in his nineties - he went to an auction when the weather was wet. He had pneumonia without knowing it. He was so furious that no one told him what to do, living on his own , that he went privately, and x rays on the lungs showed he had been working with some pollutant in the environment - it was fibres because he was spinning fibres for dolls wigs and model wigs. He ran his own company, for years. He went to see the specialist after the horse had bolted! Seeing the top man /woman or from recommendation

might be the thing to give you confidence. At the moment I guess you fell you are on a factory conveyor belt. Did you get the list from Louise Roberts? PS the top bods in the Queen Elizabeth Hospital Birmingham might see nhs patients - but you are better may be with Nuffield - you can look them up on line to see their specialty from hashis, to adrenal crisis!

[Rmichelle in reply to Hidden]

Yep as you put it- still in training he is not even mentioned in the list of consultants or professors at the top of the headed letter i was sent and also does not have a secretary. I know they have to start somewhere but i dont want anyone!! Ha. Going private unfortunatley is out of the question, i did get the list of endos from louise. If i want to change endos i have heard that you have to be re referred back to your doctor and he will send off referral again?

[Hidden in reply to Rmichelle]

The cost of an initial consultation with results from NHS would probably not cost too much. Certainly less than a car service -

Independent blood results will cost under £150.

What's a pair of new boots - or some new clothes compared to

a consultation? You are not going for surgery - you don't need it.

All you do is look at the list of experts at your private centre, see

what they specialise in then ask for a second opinion with the private specialist of your choice - you can ask about titration and how quickly this should be done, and double check that you are on the right course of treatment. Think you are improving with lower dose -

so you might be able to find out on the net or by asking the website about titration - and hashis cheers!

[Hidden]

If you feel better on 7.5 that is a good sign - may be the endo is slowing down the titration

but you can always cut the tablet in half tee hee!

[Rmichelle in reply to Hidden]

Yes going to remain on 7.5mgs for a couple of weeks and then go to half tablet and get bloids done he said.x

[Hidden]

Will you be on strictly with judge rinder soon?