Thyroid UK
90,412 members104,776 posts

Endo refusing to see me

So I had private bloods done. Took these to doctor on Friday who has contacted a senior consultant endocrinologist of the back of results. Endo is dismissing my blood tests saying because it was a finger prick test, it's not accurate and they won't see me until I've had "proper" bloods taken by my GP. BUT they are only going to test TSH (slightly high) and T4 which is in range! It's my antibodies that are the problem but they are not even testing those. So is that it?I never get to see an endo?

So annoyed.

38 Replies
oldestnewest

I'm sorry to say that you would likely waste your time seeing an Endo. If your GP is useful the he/she might be better to help. If you have raised antibodies from private test then it's conclusive of autoimmune thyroid disease.

1 like
Reply

I know. The notes from the doctor at the private lab confirmed Hasimotos yet the endo is still refusing to believe it. I often wonder why I bother paying National insurance.

1 like
Reply

Endo is just keeping his/her list down. Probs a diabetic specialist and isn't interested in thyroid. We might be terribly ill, non functional, unable to work or care for family but we're not collapsing in a coma so Endo not interested. I wonder if all the NHS funds are directed to diabetes?

3 likes
Reply

National Insurance doesn't pay for the NHS - it's for state pensions & employment-related benefits.

Reply

Ok well I receive no benefits whatsoever and have always worked and therefore always paid tax etc. The fact I've had to pay for private bloods and have to pay for my own T3 as well as supplements to help me function and get through a working day, says it all. I think I (and many others in the UK) are entitled to be a little annoyed the NHS isn't helping one iota.

6 likes
Reply

Absolutely, ceedee81. I wish you well. xxx

Reply

I do agree with what your saying.

I’ve worked hard all my life, still do. Even when I was at college as a student I had an evening job.

However, I was desperate to feel better and by passed the NHS as understand resources are stretched.

I got the name of an Endocrinologist from the list Louise provided.

Turned out to be a waste of time and my money.

I made Louise aware of this and I believe he has been removed from the list as I didn’t want anyone wasting there money on him.

If it wasn’t for the advice on here I wouldn’t be getting better.

People on here knew more than him, the advice given on here I have put into practice.

I’m gluten and dairy free and focused on healthy eating.

He said no medication would help me despite having Hashimoto’s. He tried to fob me off with anti depressants and said go on holiday. Wouldn’t even look at my private bloods either. I refused the anti depressants, I was depressed due to my symptoms.

I’m now under my allocated GP and on Levothyroxine as Got really poorly. Blood tests revealed my antibodies had increased and TSH of 12.2.

it’s still early days and we increase my dosage every 6 weeks, but even the GP was cross at my treatment and had heard of this Endocrinologist.

He has had other patients see him on the NHS and they got very poorly when there symptoms were simple and should of been put on Levothyroxine. Luckily my GP looks at all thyroid ranges.

If Levothyroxine doesn’t work I’m prepared to self medicate with NDT and take my own health in my own hands.

Many do self medicate and pay for private bloods.

I want to start enjoying life again.

Good luck

Best wishes

Peanut31

3 likes
Reply

If you're not improving with levo and it is impossible to get T3 prescribed, try to source your own and try adding a 1/4 T3 tablet every two weeks always taking note of temp/pulse and if either goes too high drop to previous dose.

If after several months you aren't improving then switch to NDT. I had to try several different ones.

I am not medically qualified but have tried whatever concoction of thyroid hormones and am fine now.

2 likes
Reply

I actually believe many so called “thyroid friendly “ endos who are on Louise’s list are not helpful at all. I too paid a lot to see such a recommended endo and he was useless! So who to see, who can we trust to help us?

3 likes
Reply

You must report doctors/endos who are on TUK lists as they don't want to send people to them.

louise.roberts@thyroiduk.org

Reply

Hi shaws

Yes I did and I explained why.

I received a reply stating they have zero tolerance to this and he would be removed.

Obviously, I’ve not checked that he was removed.

Best wishes

Peanut31

Reply

I have thought about it. This consultant was the only one in my area... he only does private work. I understand he has prescribed T3 to someone but she told me he made her have intensive and most expensive tests.... she had to go to London and told me her husband was horrified at the extortionate cost of all these... She said then she was “picking up” but far from being well. Haven’t been in touch with her since last year so have no idea how she is now.

Reply

Most Endocrinologists nowadays state that T3 is dangerous, etc etc. Considering it is a hormone everyone's body needs otherwise they'd be dead why try to frighten patients into submission through untruths?

How much have the Professional Bodies and members worldwide received from Big Pharma or 'in kind' for prescribing any particular medication?

Some hypo patients also don't do well on T3, but I think it might be fillers/binders in some of them that affect the patient as T3 itself cannot.

Reply

I agree. However it is concerning not to be able to get help even from an endo who is on the list of “endo friendly “ specialists. How are such consultants chosen? You might not know of course but perhaps someone does know and it would be most useful. I can’t imagine there are any firm criteria put in place for selection. Perhaps consultants self-refer stating they’re willing to help patients... visualising £ signs above every potential patient!

Reply

Many of us on the forum source their own NDT and T3 and have recovered their health.

Reply

I am aware of this and would do the same. However I have a very complex medical history and am so afryi might end up feeling worse. It’s scary when feeling so ill and unable to function... I dare not do it.

Reply

I understand and especially if you feel so unwell and whatever you take is not improving your condition.

1 like
Reply

ceedee81

National Insurance Contributions do apparently go towards the NHS, which is what I always thought.

bbc.co.uk/newsbeat/article/... :

What it is used for?

The system has changed over the years.

National Insurance is now used to pay for:

•The NHS

•Unemployment benefit

•Sickness and disability allowances

•The state pension

kingsfund.org.uk/projects/n... :

Source: OHE guide to UK health and health care statistics (2013), Department of Health annual report and accounts 2015/16

The NHS is funded mainly from general taxation and National Insurance contributions. In 2001, an increase in National Insurance rates intended to boost NHS funding increased the proportion paid for by National Insurance, although general taxation still accounts for around 80 per cent of NHS funding.

en.wikipedia.org/wiki/Natio... :

National Insurance contributions are paid into the various National Insurance Funds after deduction of monies specifically allocated to the National Health Services (NHS). However a small percentage is transferred from the funds to the NHS from certain of the smaller sub-classes. Thus the four NHS organisations are partially funded from NI contributions but not from the NI Fund.

saga.co.uk/magazine/money/r... :

What is National Insurance used for?

In 2017/18, National Insurance will raise about £125bn; £24bn of that goes to the NHS.

I too wonder why I've paid 46 years of NICs and now continue to pay tax.

5 likes
Reply

I wouldn't believe any it. I think all tax goes into one pot and is dealt out as the current govt and civil service decide. National Insurance only still exists as no government wants to be known as the one that increased income tax (so they increase NI instead and smugly insist that they didn't increase tax). Don't forget that your employer pays even more than you do, so it's really a tax on employment - one of the reasons many employers try to insist that their staff are self-employed. The NHS seemed to work just as well - if not better - when NI was a couple of quid for a stamp and income tax was 33%. If the percentage of wages taken as NI is so much higher now (the combined employee and employer contribution is more than income tax), why is the NHS apparently underfunded?

Reply

I believe most of us are better off not consulting Endocrinologists as some members have had awful consultations.

If you want a private consultation Thyroiduk.org.uk have a list of sympathetic doctors/endos who are able to prescribe what the patient needs.

email Dionne at

tukadmin@thyroiduk.org

if you want a list.

1 like
Reply

I did get the list and emailed the only doctor within a reasonable distance to me but bever heard back. Also discovered an hour consultation costs more than I make in a week so simply can't afford to go private. I'll just start the T3, have private bloods periodically and give up with ever seeing a doctor again to be honest.

1 like
Reply

Well it's currently extremely unlikely an NHS endocrinologist would prescribe Liothyronine.

Email your local MP for support of up coming debate in parliament

thyroiduk.org.uk/tuk/T3-Cam...

3 likes
Reply

I know they won't prescribe T3 but they could at least acknowledge there is a problem. My thyroglobulin antibodies are currently 4000. The range is 0-115. Nobody seems to be concerned about this at my surgery. I've already sent the letter to my MP ☺

3 likes
Reply

All your vitamin levels were low in last test. Ideally need improvement first. Are you now on strictly gluten free diet

TG antibodies seem to directly relate to how high or low TSH is

1 like
Reply

Yes I'm strictly gluten free and have been for the last 2 weeks or so. I realise it will be months before I see any effect from it though.

Reply

You've got already diagnosis of Hashi.

It says there black and white on your blood results.

You don't need a doctor or anybody else to pronounce it out loud make it valid and live.

Your Hashi - period.

If you're desperate to have it on your NHS medical file bring print out to your surgery and tell receptionist to scan it and add to your electronic file. That's it.

3 likes
Reply

They have added my bloods to file but still refuse to take any notice of them.

Reply

I understand that.

Unfortunately there is no such power in the world to force stupid to do clever.

All you can do is complain about this to NHS, which I absolutely encourage you to do so.

2 likes
Reply

Am sorry to say that some of these endos who are recommended on the list of “thyroid friendly endos” do not cut the mustard! They should not be on the list. I have seen such an endo last year and he was not useful at all and was very expensive to add insult to injury. Rather than helping me he actually said I had CFS!!!! What a cop out.... and what a waste of my money. Am still struggling...

1 like
Reply

If he said you have CFS he doesn't know that someone who has this condition may be 'thyroid hormone resistant' which means they only recover on T3 alone.

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

1 like
Reply

In that case I wonder why he is recommended on Louise’s list.... Surely he should not be there if he is no better than any NHS endo and yet charges a hefty fee. It’s a despairing situation.

Reply

Shaws thanks for link

Reply

There would be absolutely no point in seeing an endocrinologist with that attitude

Suggest you get the list of recommended thyroid specialists from Thyroid UK

2 likes
Reply

I did actually received that precise list and went to see a totally useless endo! So it seems any endo can be on that list whether they’re any good at all. He was NO help and an expensive experience in the process, a complete waste!

Reply

Problem is that this Endos list is built on patient(s) recommendations.

Some people (patients) have lower standards/education and often blindly believe in whatever doctor say, they get bamboozled by a doctor and then submit glowing recommendation.

Unless 2nd person comes and says - no actually this doctor is bad/useless thyroid uk has no way to check it.

What other countries, in a form of independent reviews about doctors searchable online have, UK is missing and medical establishment is strongly against(!?)

Like they're afraid of something. Possibly being exposed for their stupidity, medical indolence and ignorance.

1 like
Reply

I have to agree with you, especially in the way doctors do not want to be exposed for their failures at all. They stick together... There are good doctors but not many and if they are not working in the area one lives in then it makes it more difficult.

1 like
Reply

ceedee81, this sound so like my situation. I've managed to get my antibody count down, and I'm now adding t3 to try and my health back on track. Much of the NHS is trying to work with one hand tied behind their back. It's not just us but many more conditions are treated the same way. I hope you find your way through and start to feel better soon xxx

1 like
Reply

This was my experience as well. My GP didn't understand elevated antibodies, so referred me to an endocrinologist. The endo knocked me back because they said they wouldn't be able to do anything with my TSH and FT4 levels being in range.

Problem is, because the GP didn't understand that elevated antibodies mean Hashimotos, I actually don't have a formal diagnosis, so my family doesn't take it seriously.

On the plus side, we've figured out we have Hashimotos early, and may still be able to do something about it! I've gotten on quite well with a nutritionist, and we worked through Izabella Wentz's hashimoto protocol. It has helped quite a lot of my symptoms!

1 like
Reply

You may also like...