Endo's letter-i feel angry

[Rmichelle]

Hi there guys, a letter has just popped through my letterbox and it is from my endo after the very disapointing appointment a week ago.

Just read it and have to say that is sounds like he is accusing me of not listerning to his advice of staying on 5mgs carbi as i titrated my dose myself as i had hit hypo levels and he wants to make me more hypo, i said that i could try 2.5mgs, then he states in letter that 2.5mgs is his guide on the dose required as patient was going to discontinue use of carbi,-what!!i did not even suggest that!! It was him and another endo who stood cross armed rolling their eyes and said "so what do you want then ,come off it? Then states that he advised me of a 50% relapse-that did not happen either.

When i mentioned at appointment about hashis and you can swing between hyper to hypo on a flare up, he has put down that patient seems to think she can swing from hypo to hyper!!! (With exclaimation marks)

In his opinion heart palps and being breathless has nothing to do with the thyroid and certainley not connected to being hypo-i have told patient it is more linked to hyperthyroidism-what the ......😠 he states that i am biochemically treated successfully from hyperthyroidism-well i told them that and the levels are now hypo, off course im not hyper but the hypo bit fell on deaf eyes.

I think i will explode, my head is spinning like the girl in the exorcist😈😈 he has made me look like a silly woman.xx

[Rapunzel]

he has made me look like a silly woman

No he hasn't, Rmichelle, he's made himself look like a posturing tw@t

You are not a science experiment. Forge on, missus. No point getting angry; that's my default setting and it doesn't do me any good xx

[Rmichelle in reply to Rapunzel]

Yes i know you are right but he is a complete bloody @sshole, i just think what i load of rubbish. This is my 2nd endo and have come to the conclusion they really do not give a flying ..... ooh thats better.x thankyou rapunzel.xx

[Nanaedake]

I think the problem might be that he is looking silly.

If you wanted to you could write and ask why the did not do blood tests to rule out Graves disease. Then ask what your diagnosis is and what biochemical markers it is based on.

You could include the Japanese guidelines for diagnosis of thyroid disease which are quite clear and which mention Hashimotos. Ask which category you fall into and on what basis. Once your diagnosis is clear and you have copies of antibodies results for Graves and Hashimotos you will be correctly informed to discuss treatment decisions, however they have not provided you with the information despite your vrequests. Obviously you know it's dangerous to have uncontrolled hyperthyroidism but if your FT3 was in range then treatment decisions might be different than if it were over range so you need clarity for informed discussion. The fact they lost your results twice and did not test Graves disease markers has not helped you to participate in effective decision making has it?

[Rmichelle in reply to Nanaedake]

You are correct, i did ask about the graves disease test again last week but he said no need its not accurate and we base a graves diagnosis on symptons people are showing and the tsh which would remain supressed-mine is not supressed it over range now and frees lowering. I queried a couple of months back with 1st endo why he had headed letter hyperthyroidism/graves disease when i have not been tested with tsi-no need everyone has graves!! So letter states again that i have hyper,graves and hashis, but i know i have hashis.x

[Nanaedake in reply to Rmichelle]

Oh dear, I think your Endo is in a terrible muddle. The Japanese guidelines clearly state what is needed for diagnosis of Graves disease and so does the ATA. If I think on, I'll send you links later. It can't be true that the tests for Graves are unreliable or the ATA would not publish them online as the method of diagnosis. They would not want to be brought into scientific disrepute. You need more information about Hashimotos to discuss suppressed TSH. I think some of the guidelines refer to it with Hashimotos so do a bit of reading.

I wonder what Endo means about relapse? Relapse of what? FT3 over range? What would he Base a diagnosis of relapse on? TSH below range might not be a good marker alone because FT3 and FT4 could be in range. Edited: see excerpt from American Thyroid Association below, excerpt taken from management of hyperthyroidism.

[Rmichelle in reply to Nanaedake]

My results 3 weeks ago were

Tsh 5.48 lab 0.30-4.20

Free 4 13.1 lab 12.00 -22.00

They would not do free 3 this time but 2montgs ago it was 4.4 lab 3.1-6.8 butvi think free 3 would be much lower now due to beingbon 5mgs of carbi fir 6 weeks-im due for new bloods next week, i do think im right reducing dose further as i feel rubbish

[Angel_of_the_North in reply to Rmichelle]

Yup. You are now hypo, and you probably were 2 months ago too..

[Rmichelle in reply to Angel_of_the_North]

I am now on 2.5 mgs but sometimes doubt i should be on a much lower dose but i get bloods done next week so i will have to wait and see. He wanted me to stop on higher dose!!

[Mstiles in reply to Nanaedake]

Nanaedakae could you please send me the links to the Japanese and ATA guidelines? I’m also I’m in the same boat, never a clear diagnosis. Levels jumping around and also on my second endo. Sorry to jump into this thread! Now been put on prednisone for another problem and I’m not thinking too clearly right now to post everything.

[Rmichelle in reply to Mstiles]

Its ok mstiles its no problem, get all the help you can.😊

[Mstiles in reply to Rmichelle]

Thank you!!!

[Nanaedake in reply to Mstiles]

Here are links to guidelines, below.

Diagnosis of thyroid disease – Japan

japanthyroid.jp/en/guidelin...

japanthyroid.jp/en/guidelin...

American Thyroid Association on Graves disease

thyroid.org/graves-disease/

online.liebertpub.com/doi/p...

ATA and AACE explain thyrotoxicosis and hyperthyroidism

aace.com/files/hyperguideli...

[Mstiles in reply to Nanaedake]

Thank you so much.

[Silver_Fairy in reply to Nanaedake]

Its the 50% relapse rate of Graves patients relapsing after remission. The Graves he doesnt know she has, as he hasnt tested antibodies.......

[Rmichelle in reply to Silver_Fairy]

Exactly.😊

[Angel_of_the_North in reply to Rmichelle]

What a load of rowlocks! He just doesn't want to be proved wrong. Get your own tests done by BH or medichecks

[helvella in reply to Rmichelle]

Rmichelle,

Isn't it odd that some of the world's top éxperts realise that it can be difficult to distinguish between a hot nodule (an autonomous thyroid nodule producing thyroid hormone regardless of TSH) and Graves.

To the extent of writing a very detailed (and long) document:

ncbi.nlm.nih.gov/books/NBK2...

I don't remember you saying you had had a scan?

[Rmichelle in reply to helvella]

Yes had a scan on 9th november,

Yes both lobes are off equal normal size and heterogenous throughout, well defined nodules found of 5mm and maxium size of reduced echogenicity, and also a more well defined nodule on left side.4mm thick isthmus also heterogenous. Appearance in keepingvwith hashis, but i do think these nodules do give me problems with discomfort and im sure they release hyper symptons, endo is doing another scan as im not happy, nothing was going to be done about them but someone has mentioned they can remove them if they are causing problems?

[Lisa254]

Oh wow....am sorry you have experienced this, it is sooo frustrating, I swear they forget ur conversations and then make it up in the report once you have gone!! you most definitely are not silly! In fact the complete opposite with ur research and knowledge.

It really concerns me as thyroid patients how much research we have to do off our own backs to challenge our endos as they seem to only have surface knowledge and no passion for an area of health they are ment to specialise in.

If only they realised that thyroid conditions are sensitive to stress.

The last endo I saw said the same thing about heart palps that it has nothing to do with if I’m hyper or hypo and has referred me for a week heart monitor at the cardio unit in view to implanting something for 6 months .... oh how to waste nhs money!!

One endo I saw sent me a letter saying I was not on carbimazole (I was on 15mg at the time) she didn’t know why I was ill, didn’t know why i was in her office, referred me for a Ct scan on my stomach and ovaries (I cancelled as another endo said it was unnecessary) and advised my GP to refer me to a psychiatrist as I was emotionally unstable 😳 😂 oh and then on another occasion I asked her to explain these medical terms and she told me to google it!

From my experience this is why I have decided to go private though I am worried about the cost and neeed to get my back side back to work full time to pay for it!! X

[Rmichelle]

Hi lisa just so angry with the lies and incompetance of it all, all we want is to feel bloody better not to be ridiculed, you have also been through the mill, so sorry for you too and saying heartpalps have nothing to do with the thyroid is utter crap, can it really be in all these peoples heads on TUK-i think not, i could punch his lights out if i had the energy and breath!! The next thing will be a prescription of anti-depressants, i certainly dont need them. Makes me wonder how tbey would cope if it was them, i wonder if they would stick to the rules if there levels were in range?? I think not.xx

I am also considering going private and have found a private thyroid clinic in birmingham the consultant there is also a ENT consultant who specialises in thyroid.

[bantam12 in reply to Rmichelle]

Don't assume going private will be any better, I speak from years of experience !

[Rmichelle in reply to bantam12]

Thankyou, it is just soooo difficult with knowing what to do for the best-spend cash or use nhs thatvi pay into already but how many endos do we need to go through until we get a good one,vit just seems the hospital i go to have consultants who just dont give jot, any suggestions?.xx

[bantam12 in reply to Rmichelle]

In my almost 50 year history of both hyper and hypo problems I have only come across two good Endos and they were NHS. I paid out a lot of money a few years ago to sort out my parathyroid problem, I did my homework and chose one at a top private hospital, she was about as good as a chocolate teapot, after several appts we agreed to disagree and I walked out !

I have seen many Consultants privately for a variety of health issues and not one of them has been any better than the NHS, the only positive is you get seen quickly.

[Peanut31 in reply to Rmichelle]

Hi Rmichelle

Don’t waste your money on a private Endocrinologist, I did, first appointment £200, then follow ups £150.

I got more information and help from here, not from him.

I paid private for bloods as well as he wouldn’t do a full Thyroid (even though I paid for his bloods) getting the results was an issue, was scanned over on a plain piece of paper until I complained that I should have them in the correct format, lab ranges waited months to get them.

My very last visit was basically him saying sorry can’t help you as your TSH had improved.

He confirmed Hashimoto’s and my a scan which again I paid for and confirming Hashimoto’s too.

I’m on no medication, nothing, he said it would make me worst.

He’s on the list from here as well, realise it not a recommendation, but going to contact Thyroid UK about it.

I am absolutely livid with myself wasting this money. Don’t want other going through the same thing to waste their money.

Best wishes

[Rmichelle in reply to Peanut31]

Yes it is alot money and your not the first to say that, my hubby said we will pay out if needs be but we also think im paying into the nhs already, i am currently at newcross hospital in wolverhampton but i have today phoned the nhs tracking system and have said im not happy with the level of care there and the self important attitudes of endos, i have to call gps secretary on monday and ask to be re-referred to anither hospital-queen elizabeth in bimingham has a good endo unit apparently but again its a 3 month wait, no different i surpose.x😊

[Peanut31 in reply to Rmichelle]

I’m based in Lincolnshire, and thought paying private I would get better help etc and you deal direct with them.

I was very wrong.

Best wishes

Peanut31

[Rmichelle in reply to Peanut31]

I have changed my mind as i surpose they are very nice at first after they have taken your cash and then ditch you, i just have to give another hospital a chance, my hubby's boss goes to endo in queen elizabeth and he recommended it.x

[Angel_of_the_North in reply to Rmichelle]

It might be worth taking someone with you to appts if you can and also making it clear that you will be recording the discussion in future so there can be no misunderstandings

[Rmichelle in reply to Angel_of_the_North]

Usually take husband but this time he didnt come in with me as i usually hides under the table when i dont agree with someone. Lol and he is a 6 foot security guard-pussycat really!!

[Peanut31 in reply to Angel_of_the_North]

Hubby always came to my appointments and also came to my GP appointment where she told me it was anxiety and misinformed about Hashimoto’s.

He got up and said come on were leaving.

GP then wanted to talk, said don’t bother I’ll sort myself out, thank you.

It was my last ditch attempt to ask for help from the NHS.

Best wishes

Peanut31

[Rmichelle in reply to Peanut31]

Hubby comes to appoimtment with endos as i havent bothered much with gp apps as they no nothing either. I am loosing faith but we will see what this other appointment brings.x

[Hidden]

Think you should ask for a referral to another endo - think there was a misunderstanding as I thought you had been told to drop the dose then you had missed appointment and information was different. If you have a personality clash with any medical person then

under the Equality act you can actually take them to court for making you feel devalued and under threat. Just ask for a second opinion away may be under the nhs to Queen Elizabeth Hospital as you have been distressed by the endos. You can make a complaint through the nhs about the misunderstanding through their complaints system. Surgeries have booklets on how to make a complaint. Just feel need to ask for Louise Roberts list of people who are recommended by this website as thyroid specialists. Having two endos ganging up on you is intimidating.

On the whole it is better to move forward, and ignore the letter. If you have nodules which are uncomfortable then may be you should have a node biopsy.

[Rmichelle in reply to Hidden]

Thanks g, he wanted me to stay on 5mgs but my tsh was rising so i cut tablet to three quarters of tablet which he said people dont do that, 5mgs was too high. I did email but all of them are too far to travel too, i will probably stick with birmingham.xx😊

[Mamapea1 in reply to Rmichelle]

Don't know how so many of them get away with spouting this rubbish! What a waste of government money they are! Imagine if we didn't have this forum to keep us sane ~ all those spinning heads ascending to the ethers lol!

I've been there ~ made out to be a 'silly woman' and it's horrible! Don't pay the egotistical idiots any mind and good luck in Birmingham ~ fingers crossed. Mamapea x

[Hidden in reply to Rmichelle]

Glad you are sorting it out. The fact that you have not had a conclusive diagnosis concerning hashimotos several months ago, might make you ask questions with Endo. Feel better this afternoon, and have some drops for my ears to reduce inflammation! Rubbed some corsododyl gel on my gums and then washed it off. Off to dentist soon. Hope he can work out what to do with my old gums.

[Rmichelle in reply to Hidden]

Hope you feel yourself soon g.💛🌟

[Rmichelle]

Thankyou mamapea1, blah blah thats all there interested in and well behaved women who will think they are gods of their health!! I just want to be well not poisoned even further.x

[Nanaedake in reply to Rmichelle]

This is from the American Thyroid Association, hyperthyroidism management guidelines.

online.liebertpub.com/doi/p...

[B2] Biochemical evaluation Serum TSH measurement has the highest sensitivity and specificity of any single blood test used in the evaluation of suspected thyrotoxicosis and should be used as an initial screening test

(34). However, when thyrotoxicosis is strongly suspected, diagnostic accuracy improves when a serum TSH, free T4, and total T3 are assessed at the initial evaluation.

The relationship between free T4 and TSH when the pituitary–thyroid axis is intact is an inverse log-linear relationship; therefore, small changes in free T4 result in large changes in serum TSH concentrations.

Serum TSH levels are considerably more sensitive than direct thyroid hormone measurements for assessing thyroid hormone excess (

35). In overt hyperthyroidism, serum free T4,T3, or both are elevated, and serum TSH is subnormal (usually <0.01mU/L in a third-generation assay).

In mild hyperthyroidism, serum T4 and free T4 can be normal, only serum T3 may be elevated, and serum TSH will be low or undetectable. These laboratory

findings have been called ‘‘T3 -toxicosis’’ and may represent the earliest stages of hyperthyroidism caused by GD or an autonomously functioning thyroid nodule. As with T4 , total T3 measurements are affected by protein binding.

Assays for estimating free T3 are less widely validated and less robust than those for free T4. Therefore, measurement of total T3 is frequently preferred over free T3 in clinical practice.

Subclinical hyperthyroidism is defined as a normal serum free T4 and normal total T3 or free T3, with subnormal serum TSH concentration.

[Rapunzel]

I just want to be well not poisoned even further.

Before I was hypo I would not have realised the ineptitude medics have in this area, but I would even less have believed it. They get paid for this sh*t, royally. Clever cwill posted this avivaromm.com/hypothyroidis... but by heavens it's worth repeating this evening. Do medical schools have 'misogynist misanthropes this way' written over their portals, in some magic lettering only those afflicted can see?

If ever I am eye rolled, I do it back. 🙄 And employ some, 'I'm not listening' body language. The unutterable jerks one comes across when consulting for thyroid issues, I've been kept busy...

Forge on...they shall not have us and I'm determined to draw my state pension with or without them xx

[cazlooks]

If he has done this to you, you can bet he has done this to others. Put a complaint into the hospital that he disrespected you and didn't listen to what you said.. This has to stop now! If he is so stupid then he does not deserve to be a consultant.

[Rmichelle in reply to cazlooks]

Yes he is a fool and im moving on but inreally know ishould complain but i feel like i cant be bothered and put my energy into getting on the right path to good health and move on to better healthcare hopefully.xx😊