Looking for a consultant: I have been diagnosed... - Thyroid UK

Thyroid UK

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Looking for a consultant

chris5pens profile image
12 Replies

I have been diagnosed with Hypothyroidism now for about three years (though have suffered, I now realise, for around 15 years) and am on 125 mcg Levothyroxine daily. The problem is that I still have the same symptoms as I initially went to the doctors with (it took a battle even to get a blood test at first).

The surgery where I visit seems to have a revolving door policy regarding GPs and I have lost count of the number of times I have explained my symptoms to someone who has clearly not read my notes. The average wait to get an appointment is about 2.5 weeks, then after actually seeing a doctor, another two weeks to get a blood test, then 2-3 weeks again to interpret the results. When I get the results, the chances are that the original Dr has left, was a locum and has moved on or is not available. In the meantime, I have often been unable to work (I am self employed)and my business and family are suffering the consequences of between 6 and ten weeks of waiting for some treatment - I am teetering on bankruptcy.

Yesterday was the final straw. After three weeks of waiting for an appointment to see a particular doctor (the one I saw last time so may have some idea of what I am going through), I arrived only to find that he was off sick and I was to see another GP who I did not know and did not know me.

After talking with a relative, they have agreed to pay for me to see a consultant privately (after all, if I am well and working it would be no big deal to pay them back). The question arises as to who I should see and am looking for some advice and recommendations as to how to proceed. I live in West Norfolk but location isn't so much of an issue, I would be happy to travel.. Who do people think is the most appropriate person to start with and should it be a GP or Endocrinologist. Ideally it should be someone who is sympathetic to the problems of thyroid treatment in the UK but operates within the NHS. Thanks in advance.

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12 Replies
Moggie profile image
Moggie

Here is a link to the main thyroiduk website. They hold a list of "thyroid friendly" doctors. Fill in the form and someone will get back to you.

thyroiduk.org.uk/tuk/diagno...

Moggie x

chris5pens profile image
chris5pens in reply to Moggie

Thanks Moggie for your quick response. I see it comes with the info pack that I've ordered but I've requested by email as well now thanks to your link.

Chris

Moggie profile image
Moggie in reply to chris5pens

Your welcome

Moggie x

Jackie profile image
Jackie

Hi All I can say is that I saw a lovely private doctor for 2 years. Then told by cadio I must see an Endo, the difference was unbelievable. First visit she found at least 4 related problems,. Regarding your GP etc. I would start off with a T4 . FT3 test along with the TSH. You may end Up having to get these yourself on line You could need more T4 ( Levo) and quite likely some T3 on a script too. This is fairly standard treatment from most Endo`s. You can only tell this with a copy of your blood tests, ask the receptionist.Must have ranges too. Check you have been correctly tested. Normally to feel well on treatment likely to need T4 about top two thirds of range, and FT3 near the top. If T4 high and FT3 low, you may well do better with T4 and T3 on a script. You are entitled to those results and always ask the Phlebotomist what they are testing for, do not take thyroid drugs that morning until after the test.If you do not feel well you are not having the correct treatment.

Also of course, an ENdo always tells the GP what tests to do and importantly prescribes NHS, even if seeing a private Endo.

I hope that helps. You need to feel well.

Best wishes,

Jackie

bossbird profile image
bossbird in reply to Jackie

hi I know a great endo Nottingham area ill private message you if youre interested

Fay

chris5pens profile image
chris5pens in reply to bossbird

Hi Fay,

Any information would be great. I'm currently sifting through the list of Doctors & Practitioners but there are too many wackos on there for my liking (homoeopathy etc.) and I need to see someone that comes recommended and has proper scientific credentials.

Chris

tinaandkevin profile image
tinaandkevin in reply to Jackie

Hi Jackie,

My partner and I are trying to find a good specialist for his 88 year old mother how has been diagnosed with a bad thyroid problem and put on Levothyroxin which doesn't seem to be making much difference.. I have been looking around for a specialist near to or in Essex and was wondering whereabouts your specialist is?

Thanks

Tina

Jackie profile image
Jackie in reply to tinaandkevin

Hi Tina I am sorry, I am sure much too far for an 88 year old. She is at Leamington Spa.It certainly sounds to me an Endo would be really important for her. At that age it is even more important. Louise does have a list of NHS Endo`s, not sure how many louise.warvill@thyroiduk.org I think you will need to cut and paste The other way I find my best consultants is to look on good teaching hospital lists for names. Even if going NHS still look on all the fairly near private hospitals, often more info on each one there. Also often the good ones have their CV ion the WEB, put in their names. Then phone the secretary, NHS or private which ever, ask what treatment they like, you can get a feel usually from the secretary`s attitude etc. Usually nice, good consultants have the same in their secretaries.If you go privately and self funding, ask the consultant to request which ever tests from the GP. Drugs etc are always supplied on Endo`s recommendation by GP, as they all have or do also work n the health service. Ask what they charge, laid down prices, more for first appointment and Prof`s allowed to charge lots more, but rarely do.Any blood tests the GP cannot do, I am especially thinking, here no Free T3 test, essential.Then use Blue Horizon ( WEB site ) on line. Good and reasonable. Private hospitals ( same Lab) charge huge amounts for bloods.If you quote TUK10 then a discount of £10 on basic tests and more discount for more Actually in view f her age, ( distressing for you) I would suggest getting the 3 tests, TSH, T4 and Free t3 done any way. The GP may well treat her better. Now often due to costs GP`s only do the tSH, useless on its own..It is the only way of telling if she needs T3 on a script as well. It could make a big difference.

I do hope that you find some one good.Listener is the most important thing. Also that who ever seeing she try and get basic tests first so that she can start on the correct treatment quickly.

I hope that is some help. There are a few good consultants about who do not rely just on blood tests etc but really care

Best wishes to you all,

Jackie

tinaandkevin profile image
tinaandkevin in reply to Jackie

Hi Jackie,

Thank you so much for your detailed reply... I'll have to educate myself on all the aspects of thyroid treatment as I don't really know how T3, T4 or TSH all work together.. I have also read that Levothyroxine can cause mental confusion and pain and weakness which is something Bet, Kevin s mum is experiencing... we all thought it was the thyroid issue itself.. This is a very complex condition to treat isn't it..

Best wishes to you

Tina

Jackie profile image
Jackie in reply to tinaandkevin

Hi Yes, that is the problem as most GP`s think it is simple because so common.Any hormone problem,, ie Diabetes, thyroid etc, can cause mental fog etc. in fact any serious illness can, in the elderly untreated urine infections.commonly do.

Now to save money just the tSh is often taken and used on its own to decide on treatment.The T4 in the body should convert enough T4 into FT3, but commonly does not. In that case depending on results the best treatment is T4 and T3 on a script. Nearly always used by Endo`s, not quite so common FT3 and not too low TSH is usually an indication of this, and of course, to not be well. FT3 does lower the TSH a little but helps all symptoms especially weight, if needed, has not altered my weight as very underweight from serious other illnesses.

best wishes, Jackie

Jackie

tinaandkevin profile image
tinaandkevin in reply to Jackie

Hi Jackie,

I wonder if you could give me the name of your Endo in Leamington Spa.. Not convinced that the nearest endo to us in Essex is the right person and you are so positive about your lady.. Is she private?

I've been really unwell with post viral fatigue and haven't been able to deal with Bets health problem sooner but am now at least able to get back on the computer and find people!

How you are coping..

Best wishes

Tina x

Jackie profile image
Jackie in reply to tinaandkevin

Hi Tina , I will send you my usual TUK info, lots.Pm of course.

Jackie

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