A new Endo with attitude

[Angel20]

Many of you know my story of Graves Disease\hyperthyroidism. I have had Graves Disease approaching almost 4 years now. I use natural medicine too. I was referred to an Endo 1 year ago who failed to undertake the necessary tests and was very keen to put me on carbimazole straight away having promised me he would do another thyroid scan as I had one December 2018 that indicated Hashimoto's. Therefore I left it did not take carbimazole, this Endo let me down.

I was then seen by another Endo, a very nice man, he agreed that I should start on a low dosage of carbimazole, and he also put me forward for a thyroid scan. Unfortunately we had lockdown for months so therefore nothing happened. I requested to change a near home hospital rather having to travel changing 4 trains to get to my destination, it was too much, reflecting I should have stayed with this Endo even with the travel.

Fast forward, due to peer pressure I was referred by my GP to a different local hospital.

Today I attended my first session with lady Endo, she made history notes etc. I requested for her to test my ferritin levels, vitamin D, vitamin B12, Folate levels, and TSH, FT4, FT3, plus TPO and TG thyroid antibodies, TRAB or TSI (graves disease) possibly TRAB antibodies are causing Graves Disease, and TPO and Tg for Hashimoto's. I stated I wanted to know exactly what is going on with me, her answer was 'I will try but they will unlikely test for everything you have requested'. I then said to the Endo if you cannot get these tested, I will have them done private. Her response was I will try.

I then went on to say previous Endo prescribed 10mg carbimazole as I feel well, even with a low TSH <0002 and would want to try with a low dosage of carbimazole initially. Her response was rude. She became offended and categorically told me that they start Graves Disease with high dosage carbimazole and then she will taper it down. I said no, I do not want this. The Endo then threatened to write to the GP to basically dismiss me. I lost confidence in her there and then.

I was then sent next door within her department to have blood taken from my arm, I almost passed out, the nurse could not manage it, I have never experienced this before and now I am reluctant to go to this nurse again.

The Endo wants to do another Thyroid scan the last one was done in January 2019.

What the Endo has not realised, she cannot push people to do exactly what she wants. It took me almost 4 years to consider carbimazole, now I am not too sure. I do not believe in high dosage to start off with, depending on ones condition and how they feel of course, in my case I feel ok, I do not the shakes, I do not have palpitations, etc. Why not listen to the patient, 5mg to 10mg to start off with and maybe and if necessary to increase it in small increments.

The Endocrinologists are too keen to dish out tablets, these toxic anti thyroid tablets can also do you harm. One person in 100 will have serious side effects.

High dosage requires careful monitoring, otherwise as it has been proven the person goes from hyper to hypo.

I do not like attitude, not willing to take attitude when it comes to my health and my wellbeing.

What is next, since I had the bloods done, I will wait for the results, have the thyroid scan, might as well use the NHS to get my test results and use them to my advantage. The next step will depend on the Endo, if she persists with her fit for all approach, I am gone, prefer to go private if necessary.

[Lalatoot]

She can prescribe 40mg carbi per day. You can collect the carbi but you don't need to take any more than 5mg or 10mg.

[Angel20 in reply to Lalatoot]

Thank you, I may do this, want to try 5mg to start off with, and will do my own blood tests privately in-between the hospital ones.

[PurpleNails Administrator]

You are informed and have your own mind, the doctor cant handle a patient that doesn’t agree with the standard approach. I have heard other posters saying they have been threatened with discharge if they do not comply with the NHS preferred treatment route.

As you say, once you have the results you can plan for yourself. I wouldn’t generally recommend “self tweaking” your own medication but you are ultimately control and you have the ability to self monitor. You may have to prepare yourself for a backlash when they do a follow up test, as starting low will not have the impact they expect, but you can simply claim you kept forgetting your dose & promise to try better! Even if they do discharge you, you should maintain a prescription and monitoring.

[Angel20 in reply to PurpleNails]

Thank you. I will wait for the results. I do not like a bossy autocratic doctor. I can be stubborn and will remove myself if I do not get what I want. In the past I had private blood testing and can go private if necessary, money talks patients are treated completely different the approach is friendly a two way discussion and they listen to the patient.

[pennyannie in reply to Angel20]

Hey there again ;

Yes, money does talk providing you are talking to the right person.

Having money gives you options, and since you seem to have a handle on your Graves you will make the right decision for you.

Sadly many people suffer extreme symptoms which necessitate immediate medical help and are too unwell to make informed decisions and trust the medical team who are deemed to be " looking after ' them.

We all pay into a NHS service and believe, naively perhaps, when unwell you visit the doctors and they will have your best interests at heart, and after all, that is what they have studied and they take an oath of " to first do no harm ".

Graves is a poorly understood and badly treated auto immune disease :

The NHS do not know how to reduce / control this AI disease and seem to remain closed to other, alternative options which Elaine Moore has written widely on :

If relatively well, you can row your own boat but some patients haven't the ability or money to buy themselves better and the NHS is their only option, and it failed me and my Graves, as it has probably done to many other unsuspecting people.

We are now at the other end of the T3 spectrum and hypothyroid which simply compounds the problem as the NHS refer to guidelines that are not fit for purpose.

I'm with Graves post RAI ablation in 2005 becoming very unwell some 8 years later and referred to as a conundrum by my doctor after about 2 years on an NHS " not so Merry Go Round " and discharged with only a diagnosis of low ferritin.

Having been refused a trial of T3 and NDT - I now self medicate, buying my own full spectrum thyroid hormone and manage lingering Graves, thyroid eye disease ( caused by the RAI ) and hypothyroidism and am much improved.

There are now over 113K people registered on the Thyroid uk website as members, and this is the charity who support this amazing forum and who continue to push and petition for better thyroid treatment for everybody - so it's not just me, as this is a massive problem facing all of us and our offspring and wider family members.

[Angel20 in reply to pennyannie]

I value your input and have taken your advice to ensure I get the tests prior to starting medication in actual fact I made a note of the vitamins to be tested and took them to the Endo she was not sure whether the lab would test, I find this unbelievable why do they not test, what is the reason !

pennyannie you have taken matters into your own hands after the NHS let you down I am pleased you are doing well.

The Endo's have a script they all go by this script start high taper low. Why not try low first to see how the thyroid responds, I am reluctant to be honest to start carbi however, since I had blood testing and will have thyroid scan it serves me well to wait and see what the results are, and then I can make the right decision for me.

Thank you pennyannie .

[Hkm2281]

I was initially put on 40mg of carbimazole then a few weeks in a developed bad hives. I was told to go down to 20mg. I still felt ill although the hives went I spoke to my gp who said ti carry on he would contact endo. I decided that day I would just take 10mg and started to feel better. Well a month later I finally recieved the reply from my endo to say to reduce the 20mg to 10mg fortunately I had already been doing that.

[Angel20 in reply to Hkm2281]

Thank you for your reply it’s helpful I know me and my body I feel ok this is why I want lower dosage of carbimazole I do understand I have an issue to be fixed I am not refusing treatment to help me however low dosage is a must for me.

[Lora7again]

Do you know what your T4 and T3 levels are now? Also you do not have to do what your Endocrinologist tells you because they cannot actually make you do anything. I actually walked out on mine years ago and I don't have one now. I manage my own thyroid health because I don't think that some of them know more than some of the people on this site.

Have you joined Elaine Moore's site to ask her advice?

[Angel20 in reply to Lora7again]

I do not have latest T4 and T3 when the results come through I will ask you guys your valuable input. I will join Elaine Moore's site too. Thank you Lora7again.

[Angel20]

I received a letter from Endo and copied to my GP the outcome of my meeting with her etc This Endo did not listen to a word I said and she categorically stated in the letter if I refuse to take 40mg carbimazole she will refer me back to the GP

I am disgusted with her approach

I emailed my GP to say i am dismissing myself from the care of this Endo

It is my body I know how I feel to take 40mg carbimazole it’s not gonna happen

A consultant in 2019 said 10 mg carbimazole

Endo from another hospital I left because of the difficult journey also said 10mg carbimazole he even admitted to me that he made mistakes in the past giving his patient high dosage carbimazole turning them from hyper to hypo

Endos must work with the person we are all different must not go by the script start high and taper off the higher the dosage more side serious side effects when will they learn.

[Angel20]

I have dismissed myself from the care of the pushy Endo, who is not listening to their patients, the only way is going Private money talks and gets results.

[PurpleNails Administrator in reply to Angel20]

What did your GP say? GPs can instigate a prescription of carbimazole but they usually say they need permission from specialist. If the endo you saw won’t assist you in starting a lower dose, you will have no option but private.

Were you able to get any info on the blood test results?

[Angel20 in reply to PurpleNails]

Having informed the GP of the situation I heard nothing from them. Today I booked an appointment with a Specialist at the London Endocrine Centre, they are specialist for thyroid its next week Tuesday, he also does remote consultations too, however, for my first appointment need to meet him face to face. My bloods are the same as before, nothing has changed. To start me on 40mg when 2 other Endos recommended 10mg sent horrors to my body. I am willing to give it a go, start low, and review this is the way I want to be treated.

[Lora7again in reply to Angel20]

I used to skip doses all the time if I felt ill when taking PTU. It actually made me under active so I asked Elaine Moore and she told me my levels were too low and I needed to stop taking it. My Endocrinologist was useless so I walked out of his clinic when he offered me counseling for feeling so ill. You can listen to their advice but it is entirely up to you whether or not you take it.

[Angel20 in reply to Lora7again]

I agree Have an open mind will listen to what the specialist has to say I will make it clear to him that I want low not high dosage take it from there 😊

[Angel20]

Today, I was seen by a private Endocrinologist in London. I am so pleased the way he explained everything, the way he listened to me and had bloods done too. The next step is to have a telephone call next week to discuss my blood test results, however, we agreed that no more than 10mg carbimazole is to be taken this is my choice and he agreed, because we can review the dosage if it is not workable. I specifically said I will not pay for carbimazole private and the Endo has agreed to write to my GP for him to agree to a NHS prescription. Keep fingers crossed.