Endo refusing to see me can anyone help? - Thyroid UK

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Endo refusing to see me can anyone help?

Cath1978
Cath1978

I had my thyroid removed 15 months ago after being hyper and unresponsive to treatment. It was the advice given to me by the endo and now 15 months later I'm still ill and have asked to go back and see the consultant as it appears my body is not converting T4 to T3 shown on a recent blood test.

I've read lots of stuff on people low in T3 who have their thyroid but can't seem to find much out about people without their thyroid. My doctor has written to the consultant about my low level of T3 and asked if he'll see me but he has responded with "I think you should get a second opinion off someone else" He's wrote to another hospital's endo department and they are refusing to see me too...

What the hell am I supposed to do, I have an issue with my conversion but no one wants to help me?

Has anyone had any similar experiences who don't have a thyroid anymore?

38 Replies
oldestnewest

Hi. I had thyroid out due to cancer. My t3 has never been above 50%, endo said right where it should be!!

Begged gp for private script for t3 and buy it from Germany for now until March I suspect.

Sounds like endo is throwing you to the wolves as only they can prescribe if needed.

Hope you get an answer. See mine end Dec.

Although the thyroid produces some T3 in addition to T4, the conversion of T4 to T3 takes place outside/separately from the thyroid, for instance much conversion takes place in the liver. So having a thyroid or not, does not impact on conversion. What are your thyroid test results and their ranges, that lead you to believe you aren't adequately converting your Levothyroxine; and what dose are you taking?

Cath1978
Cath1978
in reply to MaisieGray

After what seems like a million tests for all sorts of reasons as to why I could still be feeling unwell all coming back saying normal I remembered reading somewhere about the T4 conversion and even remember asking the Endo post thyroidectomy what would happen if this happened and he said “don’t worry it’s very unusual for this to happen but we’ll cross that bridge when we come to it. I’m now at that bridge but he won’t see me.

I don’t know the exact numbers of my results as all my doctor told me was that my T3 was very low. I’m due to go back on Monday so I’m going to request numbers then. I just find it mind blowing that the Endo won’t see me, it’s like you’ve had your thyroid removed so you’re not my problem anymore.

Espeegee
Espeegee
in reply to Cath1978

Seriously I’d be writing a letter of complaint to your local area health authority, what an absolute cheek, he’s paid by his patients indirectly so on what grounds has he refused? If it’s because he’s clueless then he should go for retraining because he’s taking money under false pretences.

What are your latest thyroid blood test results? Have you had vitamins and mineral levels tested? Are you taking any others medicines or have you got other medical conditions? All of these could potentially impact utilisation of thyroid hormone.

Cath1978
Cath1978
in reply to Nanaedake

I was low in B12 and vit D a while back but these haven’t been tested lately.

I have been unwell for 3 years and 18 months ago passed out at the wheel of my car which led to investigations from a cardiology point of view but bloods also showed I was extremely hyperthyroid too. I’ve got a loop recorder fitted in my chest and take 100mg of levo plus nortryptaline as a neurologist reckoned I had fibromyalgia which I don’t think I have and take midodrine as I have low blood pressure which was found amidst all the tests I’ve had done.

Nanaedake
Nanaedake
in reply to Cath1978

I think you need to follow SlowDragon 's recommendation and have full thyroid evaluation. There is an interraction between tricyclic antidepressants and thyroid hormone although I'm not medically trained so don't know exactly what.

Often when thyroid hormone is not optimal and there are vitamin deficiencies, other symptoms appear and further investigations should be conducted to find out what is at the root of the problem. Does fibromyalgia cause vitamin deficiency? If not, then could it be vitamin deficiencies causing fibromyalgia like symptoms? Is so, then how is taking tricyclic antidepressants going to correct that?

If you had vitamin deficiencies your doctors should have ruled out conditions that might cause lack of nutrient absorption. Common conditions that often coexist when people have autoimmune thyroid disease might be pernicious anaemia and coeliac disease, neither of which can be conclusively ruled out by blood tests in primary care.

Orthostatic hypotension and low B12 case study

ncbi.nlm.nih.gov/pmc/articl...

Sounds like you've been medicated up to the eyeballs instead of being thoroughly assessed and getting nutrient levels sorted. Pursue this.

Espeegee
Espeegee
in reply to Nanaedake

When you started with the anti-ds did anything improve? If not then consider not taking them, you shouldn’t take anything that isn’t helping.

Cath1978
Cath1978
in reply to Espeegee

They helped me to sleep for a short while but that didn’t last long! I’m quite looking forward to my gp appointment on Monday now 👏🏼

Espeegee
Espeegee
in reply to Cath1978

That’s the spirit lol

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3. Also extremely important to test vitamin D, folate, ferritin and B12

Have you got recent results you can add here?

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Thyroid Uk has list of recommended thyroid specialists, including ones that will prescribe T3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many. Note his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

Getting DIO2 gene test may possibly help get T3 prescribed on NHS

bluehorizonmedicals.co.uk/t...

thyroiduk.org.uk/tuk/testin...

DIO2 gene test article

thyroiduk.org.uk/tuk/testin...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

Many NHS endocrinologists are being heavily leaned on by CCG NOT to prescribe due to cost

Hence huge campaign by Thyroid UK and other Thyroud groups

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Debate in Scottish Parliament this week

healthunlocked.com/thyroidu...

Cath1978
Cath1978
in reply to SlowDragon

That's a lot to digest!

I can't believe in this day and age that I'm resorting to searching the internet for help and it seems like the only help you can get (if you can afford it that is) is through the private sector. I can't afford to pay for private tests, nor can I afford not to if I want my health to improve. It seems that I was given ill advise to remove my thyroid then just left to rot!

Thank you for the info, I will now try to understand what it all means and how I can help my situation.

Hate to say it but from some of the stories I’ve read on here paying to see someone privately isn’t even the answer. I think a lot of it is pure and simply down to the luck of the draw.

Read and act on what Slowdragon has told you and act on that information. I’m tempted to say that I can’t believe an endocrinologist would say what he said to your GP but alas I can. I don’t know what it is with endos!

PS - I think you need to contact your MP and tell him / her your sad tale. Hopefully an MP hounding him will irritate your endo if nothing else. Although do you actually want someone like that treating you? Contact Thyroiduk.org for their list of thyroid patient friendly endos and see if you can be referred to someone sympathetic.

SlowDragon
SlowDragonAdministrator
in reply to Cath1978

Roughly where in the UK are you?

There are some NHS specialists on the list.....though waiting lists are horrendous due to all existing patients on T3 now have to be referred back

Some endocrinologist are prepared to prescribe. So it's important to pick with care

You are legally entitled to printed copies of your blood test results and ranges from GP

Get copies next week

See what has been tested, ask GP to test vitamins if not been done yet

Come back with new post once you have results and ranges.....members can advise next step

T3 is very cheap elsewhere in world

30 euros for 100 tablets in France or Germany

Even less in Greece, Turkey

Recent slight reduction in price here last month to £238 for 28 tablets here......£850 for 100 tablets

Government being pushed hard to force price down

Cath1978
Cath1978
in reply to SlowDragon

I live in Rochdale so under the Pennine Acute Care but Manchester Royal also refused to see me.

I will ask for results and do a new post next week.

Thank you so much, it's nice to actually have people to talk to about this.

SlowDragon
SlowDragonAdministrator
in reply to Cath1978

Very many of us would not have made progress without all the knowledge, support and help on here.

Did you get diagnosed with Graves' disease before you had thyroidectomy?

Ever had TSI or TRab antibodies tested?

Or TPO and TG thyroid antibodies- can be high due to Hashimoto's or Graves

Link about antibodies

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

Espeegee
Espeegee
in reply to Cath1978

In which case there’s a thyroid specialist close to you at the Salford Royal! Downside, I was referred by my GP 11 weeks ago and am still awaiting an appointment, another 7 to wait as they have 18 weeks to see me. I can’t imagine she would refuse to see you but it may be a very long wait.

Espeegee
Espeegee
in reply to Cath1978

On a discount day Blue Horizon will charge £79, it’s a biggish amount but can be money well spent as it will give you clear results which you can use to argue your case with your GP.

SlowDragon
SlowDragonAdministrator
in reply to Espeegee

Many of us only made progress by getting full private testing

shaws
shawsAdministrator

I am really very sorry for your predicament. It seems that those who are 'supposed' to be sympathetic and knowledgeable (we expect them to be anyway) are not.

The suffering patient continues to suffer with no-one willing to be brave enough to prescribe for the patient. I think that's what is happening to you. You aren't improving - have no thyroid gland whatsoever - so you need adequate/optimum thyroid hormone replacements and if you aren't converting T4 to T3 they need to prescribe T3 come what may, but I think they are cowards as they are putting their livelihoods before a patient's health and the patient's family.

Just today, I came across a report posted on June 16th 2008 where its headline is T3 Therapy may be substituted for T4 therapy. i.e. therapeutic substitution of levothyroxine alone, according to recent results from a study. We are now ten years forward.

One of TUK's Advisers and his Team also found similar in their research I think about two years ago now. There have also been other studies which point in the same direction.

It clearly appears that the last people to read Research Papers about conditions in which they are 'supposed to be' experts just ignore these results.

Patients are left in dire straits due to their inability to recover on levo alone, particularly those without a thyroid gland. I couldn't recover on levo and I have my gland but the greatest excuse to withdraw all T3 was due to the cost of the product.

Never mind the cost to mainly women, or men who need T3, their families, and livelihoods in danger. Many have had to give up work and remain unwell for years before someone like the brave Dr Skinner arguing with the 'professionals' that their 'Rules/treatment is wrong for many thousands.

They have no knowledge of clinical symptoms but willing to diagnose and prescribe antid's/pain relief and anything but some T3 for which the body cannot function without.

I do hope that The Lords can make some headway as the professionals seem to be headstrong and ignore ill patients but diagnose them with a psychiatric condtion, which they may well develop if T3 isn't coursing throughout their bloodstream.

They must be so ignorant as not to be aware that T4 is inactive - it has to convert to T3 but many of our bodies cannot with synthetic T4.

The 'authorities' have also been successful in withdrawing NDT from being prescribed and thousands recover on it but there are others who can only do so on T3 alone.

Is this not a truly scandalous state of affairs that people have to look on the internet (if they have access) in desperation as their health isn't improving.

And as for your person quoting "I think you should get a second opinion off someone else" is not worth a penny for his attitude.

Espeegee
Espeegee
in reply to shaws

I think I’m going to print that off Shaw’s and send it to the crap endo I saw, she may wake up a bit! When you think of all the absolute rubbish they have been prescribing on the NHS for years it makes a total nonsense of this attitude that to save money you should start to refuse necessary medication. On the other hand if you have dandruff, hey, here’s a script for something you can buy over the counter for a fraction of the price. It’s really back to front.

shaws
shawsAdministrator
in reply to Espeegee

You must provide a link (which I didn't take yesterday) and they still wont go along with any other research which is different to what they are told to prescribed. The following excerpt from the link below:-

“The results suggest there is proof of the concept of effective therapeutic substitution of T3 for T4 therapy,” Zemskova said during the presentation. – by Christen Haigh"

But the heading contradicts this i.e. "Therapeutic substitution of levothyroxine alone can be made for a combination of levothyroxine and liothyronine, according to the results from a recent study".

I will try to find the link I quoted from yesterday but been difficult so far.

healio.com/endocrinology/th...

shaws
shawsAdministrator
in reply to Espeegee

With the following link you'd have to have a blood test to see if you have a faulty gene - DI02.

thyroiduk.org.uk/tuk/testin...

Jnetti
Jnetti
in reply to Espeegee

Espergee, and Cath1978, did the endo say why she is refusing to treat you when you obviously have a T4-T3 conversion problem?

Point out that it will cost the NHS even MORE money than prescribing you T3 to deal with your illness and disability caused by its lack.

Cath1978
Cath1978
in reply to Jnetti

He just said he thought I needed a second opinion, he hasn’t even given me an opinion in the first place!

Jnetti
Jnetti
in reply to Cath1978

!!!!!!!!

I'm actually at a loss on where to go next! What do you do when consultants refuse to see you or take you on as a new patient.... I think they know I need T3 but don't want to be the ones telling me they can't prescribe it!!

Nanaedake
Nanaedake
in reply to Cath1978

I think your situation is complex because of the several medications you are taking and you may have been misdiagnosed with fibromyalgia? This probably needs sorting out in Primary care but the doctors have little time for it. It's going to take time to unravel

I would ask your GP to assist you and if necessary book up a series of appointments to sort it out. What would they do in your situation? Decide what outcome you want and request help to achieve it.

Cath1978
Cath1978
in reply to Nanaedake

I know I don't have fibro, I think that was just a fob off as they couldn't find an answer. It was a rhuematologist that said he thought I needed to go back to endo initially so my GP wrote the letter. The poor GP has been nothing but helpful and I think even he is frustrated with my situation as he's struggling on where to go next. I've booked a double appointment with him on Monday morning to try and start from scratch and see where we go from there. I've had 54 GP appointments in the last year, they are going to invite me to the xmas party or put me on the payroll....!!!! The one thing that has kept me going is my sense of humour, without it I'd be under the mental health services as well.. Thanks for your help.

Nanaedake
Nanaedake
in reply to Cath1978

That's a good start. I don't know what you want to achieve but if it were me I'd want to get off all the medicines apart from levo as they may be causing side effects. I'd want the help of the GP to do that. Alongside, get all vitamin levels tested and any minerals NHS will do then check the cause of any deficiencies or simply low results. You can get bloods done that NHS won't do through an online lab such as Medichecks or Blue Horizon. Exclude poor absorption and causes of poor absorption if vitamins are on the low side even if in NHS lab range. Examine foods, nutrition and optimise. Since you were hyperthyroid, get bone health checked, calcium levels and if possible, parathyroid hormone (its not tested in primary care). Once you begin to feel better you could start a gentle exercise program such as walking for 15 to 30 mins daily. It's going to take at least a year to begin feeling better, it took me 3 years to get health sorted out.

SewinMin
SewinMin
in reply to Cath1978

54 appointments. They should give you an office there!

shaws
shawsAdministrator
in reply to Cath1978

The following is from one of our deceased Advisers who ran the Fibromyalgia Research Foundation, as well as Dr Lowe.com and Thyroidscience. He was a scientist/researcher.

web.archive.org/web/2010103...

He took only one blood test, for the initital diagnosis and thereafter it was all concentrated on relief of symptoms.

He'd never prescribe T4, only NDT or T3 for thyroid hormone resistant patients.

There are some other topics at the top of the page, some may not be accessed as all his articles are archived.

Bunnyjean
Bunnyjean
in reply to Cath1978

If you can afford it have a Blue Horizon Thyroid plus 11 or Medichecks ultra blood test done. This should be done early morning and fasting leaving of Levo for 24 hours prior to the test. Then post the results with the ranges on this site for answers.

After I had my Thyroid removed I knew nothing about medication, testing etc. People on here will help you, please don't worry it a sad story from the NHS who are supposed to help us. You probably haven' go fibromyalgia you are on the wrong medication. I had similar aches and terrible pains on Levo but on NDT they have all gone.

What a horrible situation to be in. I would feel that I had been abused in your situation, having followed the endo advice and had my thyroid removed then no support or treatment to get well afterwards. I would make a complaint to the hospital.

Is there any way your gp would give you a private prescription for Liothyronine as it really isn’t expensive in Germany. You might feel so much better while pushing to get T3 prescribed on nhs.

My other thought is A&E...

Good luck whatever you decide.

Hi Cath

You have had some good advice here - it reads as though your doctor is sympathetic to your problem and in the first instance might it be possible that he would write you a private prescription for T3. He's identified your lack of T3 - he can put this right, in the short term and monitor your progress whilst the hospital issues are sorted out.

He has probably prescribed T3 in the past, before it was dropped from the list and become the financial medical football it has become.

I read the German brand Thybon Henning is the cheapest.

My own journey around the Nhs departments was all a waste of time and money -

I remember the rheumatologist saying to me at my final appointment with his department

" to go back to endocrinology and get our thyroid sorted out " - sadly he didn't write this in his closing, summary letter back to my doctor and so I had to fight all over again for a referral to endocrinology which is where I wanted to go in the first place !!!!!

I have Graves disease and following RAI in 2005 now also have thyroid eye disease and

hypothyroidism.

I am now self medicating with NDT as it contains all the hormones my own thyroid produced and not just T4 which seems to be the only hormone replacement available on the NHS.

Prof. Toft - article - Thyroid hormone replacement - a counterblast to guidelines.

I think Slow Dragon above has already given you the link - it might help you -

I gave copies of it to both my doctor and the one and only Nhs endo I've seen in the past 10 years - it didn't do me any good - I now seem to be like a hot potato -

I have been refused a trial of T3 because of a suppressed TSH and dispatched back into primary care to a doctor who tells me " I'm a conundrum ???? "

I wrote requesting a follow up with the endo, as promised at appointment.

My three letters, March, May and July of this year have been totally ignored, my telephone calls answered, only to be told I'm in a special file.

I finally woke up to the fact that I couldn't keep chasing people who didn't respond to me

and that I was in the fobbed off file !!!!

Sorry if it's ended up a rant - take good care -

Yes I had the same after mine was removed in 2015. I was put on Levo and became very ill.

After 8 months I joined this site. I now have private blood tests usually once a year and self medicate with NDT. Most of the people on here use private blood tests these give you all of the results including FT3 which is the important one.

Morning to you - just thought - do you have Graves Disease ?

You don't actually mention this - if so, the following books might be of help :-

Graves Disease A Practical Guide by Elaine Moore - stateside with her own very comprehensive website , as she has Graves herself.

Also How to keep your Thyroid Healthy by Dr Barry Durrant Peatfield - an easy read andexcellent source regarding your health with or without a thyroid.

If with Graves, it's an autoimmune condition and as such it is for life.

It may now not be life threatening but you will need to read up and become your own doctor. From my experience there is very little help or knowledge within the NHS -

it affects about 25% of 1% of the public so guess it wasn't considered at med. school.

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