Appauling: So its gone from bad to worse now... - Thyroid UK

Thyroid UK

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Appauling

LexxiiB profile image
30 Replies

So its gone from bad to worse now! After a disappointing trip to an endo a few months ago, Ive now been told this mroning that after I have a T4/TSH check (they won't test anything else) at my GP, that they will be assessed by a pharmacist only, and only if they are out of range will the doctor look at them. No consultation, no chance to the tell the doctor how Im feeling etc. I asked to see the doctor anyway, and they have said there is no need and they won't give me an appointment based on my thyroid. I literally give up! What it comes down to is as long as you are "in range" and not dying then you are signed off. Bye bye. Dont' come back! I am fuming, and the term "in range" makes my blood boil....... sorry for the rant people!!!

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LexxiiB profile image
LexxiiB
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30 Replies
humanbean profile image
humanbean

If nobody will talk to you or allow you to explain your point of view and your symptoms then your only choice is to write a letter to your doctor and insist on it being kept with your medical notes. And make sure that you either deliver the letter by hand (and state that you have done so on both the envelope and the letter), or you send it registered or recorded delivery.

Also make sure that you keep a copy of the letter yourself, keep the receipt from the post office (if appropriate), or write the date of hand delivery on your copy.

TSH110 profile image
TSH110 in reply to humanbean

Send it special delivery not recorded! SD is logged and guaranteed for next day delivery, recorded is not and is a waste of money.

humanbean profile image
humanbean in reply to TSH110

I knew one of them was better than the other, but couldn't remember which was which. :)

TSH110 profile image
TSH110 in reply to humanbean

Special delivery every time 😉

Kell-E profile image
Kell-E

Well, if you take the NDT that you inquired about in a previous post, your TSH will likely be out of range and you'll get to talk to the doctor...lol.

LexxiiB profile image
LexxiiB in reply to Kell-E

Good point.....! I haven't sourced the NDT, Im nervous....

Kell-E profile image
Kell-E in reply to LexxiiB

I was nervous at first too. But hubs has been taking Thiroyd sourced from Thailand for over a year now. New doc tested his TSH/T4 and uh-oh, now they are all freaking out because his T4 is low and TSH is .002. LOL...hark, the NDT works!

TSH110 profile image
TSH110 in reply to LexxiiB

Me too but I have never looked back since swapping to it.

in reply to LexxiiB

It’s ok and worth a try

SeasideSusie profile image
SeasideSusieRemembering

I'm seriously beginning to wonder what doctors are actually paid for.

TSH110 profile image
TSH110 in reply to SeasideSusie

Life style statement?

LexxiiB profile image
LexxiiB

Yes. It seems that there is now a wall of pharmacists / nurses / health practitioners etc in front of them. I need something else checked but Im only allowed to see a nurse for that!

SeasideSusie profile image
SeasideSusieRemembering in reply to LexxiiB

We have an Advanced Nurse Practioner at our surgery, and he is excellent, I much prefer to see him than a doctor. Your appointment is never "timed out", I've been in with him for 20 minutes with no sign of being rushed. He listens to you, accepts your point of view, discusses things (hallelujah!!), knows as much as the doctors and the only thing he can't do is sign a prescription - he can write one but has to get a GP to sign it.

He even accepts my suppressed TSH, has discussed it with me, acknowledges that I understand a lot about my hypothyroidism, looks at my thyroid history, sees my FT4 and FT3 in range and is fine about it. I asked him once, how to convince the GP to accept these results as I always have the freaked out 'your TSH is suppressed and reduce your Levo comments' , and he replied that I should point out my history to them which, of course, the doctors don't look what's gone on before. I haven't tested it out with a GP yet, I prefer not to see them!

Naomi8 profile image
Naomi8 in reply to SeasideSusie

Very very interesting.I have logged this in my brain,as I am about to see my new GP,having relocated from Seaside Cumbria to Seaside East Sussex!My last GP did my frees & monitored me with NHS thyroxine & my BYO T3.Now on NDT & feeling apprehensive re new practice

SeasideSusie profile image
SeasideSusieRemembering in reply to Naomi8

Good luck Naomi. I have to admit, compared to the GPs the Advanced Nurse Practioner is a bit of a gem!

Rang the surgery this morning about an itching,bleeding mole. One month to eve see a nurse!!

Di

SlowDragon profile image
SlowDragonAdministrator

Before starting on NDT or any other options you will need full Thyroid and vitamin testing privately

Low vitamin levels are extremely common especially with Hashimoto's

Are you on strictly gluten free diet? Or tried it?

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you have results and members can advise on next steps

LexxiiB profile image
LexxiiB in reply to SlowDragon

I have done this before, back in February, and I am supplementing, but if Im honest a busy life has got in the way and Im yet to get around to doing a retest. I showed the results to my doc (low D, so she decided to pursue NHS testing, and then concluded that I was actually in range for the NHS and so it was no issue - I supplemented anyway!) Most results were at the low end of the scale so again i just supplemeted myself. She said that the private test companies also made up their own ranges out of line with the NHS so the test realistically meant nothing, and should not be consulted as they were adding to my misery and perception that all was not well, when infact I was fine (subtle, or not so subtle way of saying I was a hypochondriac!).

I will get it sorted this month and see where I am at. Thankyou for taking the time to reply.

SlowDragon profile image
SlowDragonAdministrator in reply to LexxiiB

Private test companies often use same labs as NHS

She's making it up as she goes along!

Come back with new post once you have up to date results

MaisieGray profile image
MaisieGray in reply to LexxiiB

"She said the private test companies make up their own ranges" - oh yes, they do, they do that every time, they absolutely do .....

So that's pretty much on a par with NHS Drs who make up their own stories to suit their own agenda then.

Valarian profile image
Valarian in reply to LexxiiB

Private labs (which as SlowDragon says, may in any case be used by the NHS) may use DIFFERENT ranges from those used by your GP's lab. This means you can't take a result of say "20" and compare that directly against the range used in your NHS tests, unless they happen to use the same one.

However, if you took two samples at the same time and sent one to the lab used by your local practice and the other to Medichecks or wherever, you would expect both results to be at pretty much the same position in their reference range - eg bottom quartile, midway etc.

shaws profile image
shawsAdministrator

You are very entitled to rage - it is more than disgraceful that the majority of the medical profession are under the illusion that levothyroxine is suitable for everyone. That once the TSH and T4 are 'in range' (never mind that it is T3 that should be optimum and TSH 1 or lower) dose wont be increased. Assume that whatever we complain of is not due to hypothyroidism or too low a dose of thyroid hormone replacements.

They are very harsh - and shouldn't be in the medical profession whatsoever - those who are supposed to have a vocation - rather than the desire to attempt to climb up the professional ladder when the priority should be for patients' recovery.

They do not know best - we, the patients know best and whether we are unwell or not. The very worst is that the Free T4 and Free T3 are rarely tested. This is very false economy for the NHS - i.e. that patients remain unwell - unable to work or provide for themselves or family. Not one doctor understands the stress/strain our body is undergoing through the lack of the Active thyrod hormone which enables our bodies to function at an optimum. Not having to go to bed to try to recuperate whilst heart struggles to beat at a natural level. It is either too slow or too fast and they are unaware of how awful this experience is.

Our bodies should be calm and 'normal' - this can be achieved by NDT - even though 'Tall Stories' have been made about it in order to get it removed from being prescribed and they succeeded. Now - they have also removed the life-line to others whose lives are restored by T3 yet this also has been removed from the NHS. Thousands have improved their health on NDT but False Statements made by the Associations (and I have no clue where they got their scientific information from) and they refused to answer one of our Adviser's Rebuttal about their False Statements despite three yearly reminders - Why? ~Is it because they have no concrete evidence as we know many of our members have recovered their health by being forced to source their own. That since 1892 people's lives were saved. No blood tests in 1892 - except by the skill of doctors recognising symptoms, symptoms, symptoms. From then on people survived and avoided a crippling, terrible death.

Dr Gordon Skinner knew this and hopefully, if his Scientific Studies are published, the medical professionals will take notice. He was so concerned that he arranged a Conference for all Endocrinologists and one by one they all refused - the last the evening before.

So, deaf ears, don't respond to the call to save patients and to relieve their symptoms: to prevent more distress and a safe hand to guide them slowly to restore their health and lives.

How many of the professionals would have had 10,000 testimonials sent to the GMC stating their action had saved their lives as did Dr Skinner!!!!!

Not only that but how many distraught patients may have been forced to take the action that one poor woman took who left a letter to the coroner of her reasons to take such a drastic step. How simply terrible and no troubled consciences of the professionals' failures who are afraid to lose their livelihoods but are forced by 'guide lines'.Guide lines are supposed to take us along a path to safety.

MaisieGray profile image
MaisieGray

If a patient has expressly refused to consent to the sharing of their personal information with other health professionals, or has withdrawn implied consent, does that mean that it would be unlawful for the Drs to share their blood test results, in which case would they therefore have to see the patient? After all, in general, a pharmacist is not an employee of the NHS, they are independent service providers or contractors; they are business owners, partners, associates or employees of private businesses. Their expertise is in pharmaceutical & allied matters, not in the interpretation of patients' tests and making decisions about their future health care and treatment - otherwise they'd be called doctors. What next - the provision of a quick scale and polish while you have your fitting for your new dental plate there?

in reply to MaisieGray

Or Botox injections!. Mine does 😆

in reply to

What about a lower face lift since having my thyroid removed everything including my neck has dropped.

Cooper27 profile image
Cooper27

I'd simply call to make an appointment for symptoms. If asked, say the appointment is due to chronic fatigue, memory problems, dermatitis. Then once you're in the appointment, say you've read those symptoms could be thyroid related, and could the doctor give an opinion on whether your latest results could be causing it.

Laundretta profile image
Laundretta

Do they ask what your appointment is for! Tell them to mind their own business!!

LexxiiB profile image
LexxiiB in reply to Laundretta

Sadly they do to see if your request is valid. The doctor has to call you back to see if you’re worthy of an appt!

Laundretta profile image
Laundretta in reply to LexxiiB

Goodness me, I’d have to invent all sorts as a premis for getting in there, then they’d have to remove me with security!! Are they actually allowed to do this? How awful for you! Can you change surgery? In our area they make a big fuss out of surgery catchment areas, but in fact you can choose anywhere providing you sign a thing agreeing that you’ll never get home visits. Good luck!

LexxiiB profile image
LexxiiB in reply to Laundretta

Home visits??? I didn’t think they still existed!! 😂

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