has anyone had their doctor tell them that the... - Thyroid UK

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has anyone had their doctor tell them that they don't have a condition.

anbuma profile image
18 Replies

my doctor told me I don't have a thyroid problem or lupus because blood tests were normal(ie within range)despite having and telling him symptoms.THS was at teh higher end of range.not had T4 or T3.

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anbuma profile image
anbuma
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18 Replies
LouiseRoberts profile image
LouiseRoberts

Hi

Have you got the actual results please..

L

x

anbuma profile image
anbuma in reply toLouiseRoberts

TSH 3.2 range 0.35 -3.5

Tatty10 profile image
Tatty10

I was told many times that my thyroid was ok, 6 weeks ago i had a tt which was done whilst i was on holiday, i was taken ill diagnosed and treated all within a few weeks, i have no faith in the nhs whatsoever.

linda x

I agree Linda. My family has been devastated by the arrogance and incompetence of those within the NHS who are sitting on a cushy job and don't care about patients even when the information they need is presented to them.

We decided to take charge of the situation ourselves and went private. It has still taken many years and a GREAT deal of money, but we have finally found someone who is helping.

My advice to anyone who has a GP who will not listen is to not waste time trying to get them to change their minds, but to try a doctor who will listen and actually try to help you.

Jane x x

tegz profile image
tegz in reply to

Sad , but all too often the case,Jane.

I reckon one [or two] shots at the unresponsive GP would help others that follow.

Voting with feet is OK- but expensive if no option or money!

The complaints system should be able to deal with these problems - but the Brits don't complain enough!

Pinklily profile image
Pinklily

Yes since the age of about 8 I have been told my thyroid is normal because of blood results. TSH always in range but high end of normal, T4 about 17 (top of range 21) and t3 never tested. I started to become very ill in 2010 and was eventually forced to leave work that year due to this. Continually told thyroid normal because of bloods despite all the ever so obvious debilitating symptoms.

Eventually I got a diagnosis of ME from the NHS in 2011 and continually got worse and could barely function; being bed bound most of the time. In the end I paid for private bloods and saliva and then a few months later went to see Dr Peatfield in Dec 2012 who said there was something wrong with my thyroid and probably has been since I was 8yrs old! I'm 40 tomorrow so that's a long time to be told all is normal because of a blood test being in range when it so evidently wasn't!

So much now makes sense and I am now starting to slowly recover since taking t3 as advised by Dr P and of course checking vitamins and minerals, eating a healthy wholesome diet and treating adrenals. Listening to an NHS GP or consultant say my thyroid is 'normal' because of the blood test despite glaring obvious symptoms and a low basal temperature was about as much use as a chocolate teapot to me! Keep reading and learning as knowledge is key and maybe it's time to find a new doctor!

Pink x

tegz profile image
tegz in reply toPinklily

Great to hear of such progress, Pink.

I hope these stories bring a blush to those in the NHS, reading here!

[It's a disgrace, really - but so institutional that it's hard to find where to start]

rosetrees profile image
rosetrees

Yes. I've been ill since I was 20. I'm now 57. For most of that time I have been told things such as "your are a perfectly healthy woman, there is nothing whatsoever wrong with you". Coupled with "she must be told to avoid doctors and not be allowed to use her intelligence to discuss it". Not once in all that time has anyone offered me any tests, allowed me to tell them my symptoms or made any attempt to diagnose me.

Fast forward and last year I was "diagnosed" with ME by a "specialist" who wasn't interested in my history, didn't ask enough questions to make a diagnosis, didn't examine me and whose letter to my GP was unsigned. I submitted a complaint to which I didn't receive a reply.

A grudging admission by one of the doctors at my practice last October that my thyroid was "slightly underactive" finally gave me the clue I needed.

As far as I am concerned the GP service is, at best, positively dangerous. Their only successes are diagnosing conditions that a trained nurse could easily deal with. In my opinion all first appointments should be with a nurse. As they are paid less than half of what a GP earns, more could be employed giving longer appointment times. They could then refer cases that they cannot handle to GPs, which ought to give patients much longer with their GPs. A 10 minute appointment is worse than useless much of the time.

Like Pinklily I also saw Dr P. In April this year and again last week.

I now refuse to be hurried. If necessary I write down my questions or requests to ensure they are covered.

Grrrrrrr. Stop now before I write an essay.

tegz profile image
tegz in reply torosetrees

That's it, Rose - times up! ;)

rosetrees profile image
rosetrees in reply totegz

Don't encourage me!

Been there, done that. According to the NHS I did not have pernicious anaemia, coeliac, or neutropaenia, neither was i anaemic and my thyroid was 'normal'.

Oh, and of course i did not have adrenal fatigue either. Got to love the NHS.

I later had all the above confirmed privately at great expense to myself

Clarebear profile image
Clarebear

I was told that I didn't have a thyroid problem in spite of a TSH of 18.0, as fT3 and fT4 were just in range. Thankfully I too saw Dr P and am now well on NDT. The NHS do now acknowledge my thyroid has completely failed and I get my NDT on the NHS :)

Apparently I had 'anxiety' as my bloods were 'perfect', then they found a nodule and I had a partial thyroidectomy. Never anything wrong with my Thyroid function, says ENT docs, GPs. All fatigue etc. symptoms afterwards apparently 'ME/CFS'. (despite TSH being over 5 for over 2 years). Only thing to help was Vit D and this site, but I'm just too 'lazy' without motivation to do anything about it yet, except learn and moan a lot! J :D

I could write a full length hardback reference book on the subject... it has happened to me repeatedly over the 55 years I have been alive, severely compounded as a child by having parents who "forelock tug" in the presence of Doctors and went to extremes to massage the "God syndrome" most have, so even blatantly obvious misdiagnosis and unnecessary surgery went unquestioned.

Result: serious permanent disability, extreme chronic pain, and longer term damage from the drugs I have to take to exist, most of which cause the other problems I now have to live with. I have had repeated misdiagnoses of MANY things, and even now, I get more of it.

Whilst all Doctors are prone to this, NOTHING comes close to the wilfully institutional ignorance of Endocrinologists!

Moral of the story is - question everything, take nothing for granted and research yourself as much as you can so you can ask the right questions and spot their bluffing when they really have no more clue than the receptionist has! The only Doctors I have had any respect for are the relatively few I have met that will sensibly discuss things and reason their position, but even then that rarely extends very far, and don't automatically take that as a sign they truly know what they are talking about.

tegz profile image
tegz in reply to

Instead of foreign holidays pushed endlessly by the travel/tour industry [and who doesn't like a break?] it would be better if people were encouraged to save for private medical tests & diagnosis and then present the ongoing treatment to the NHS system. Happiness would no doubt increase long term - & greater than any 'break away', now and then.

Health has been sidelined to managing illness, so much of the time.

in reply totegz

Holidays? What are those? I still have a Blue passport, long expired!

Even if I was fit enough, I couldn't afford one, and now I have the news that (if I am "lucky" enough to live long enough) I will have an EXTRA year without any benefits (from 2020. [7 years] when the ESA overlap for long term IB claimants will end for me if the Tories don't find another reason to kill it off again before then) and that's well before my state pension kicks in [now at age 66, so that's 2024]. In effect, I bought the "insurance" and paid big premiums under one set of conditions, but they changed the level of cover dramatically leaving everyone stranded!

We shouldn't NEED to pay for anything abroad, the problem has been one of missing the entire point of what a "health" service is all about and the system here has become one of treating "last hope" illness, sickness and disability rather than any sort of pre-emptive health management policy (This forum is a particularly good example where mismanaging an easily treated condition ends up with more and more ill costing a fortune to push around the system getting nowhere), now it's become even more all about making profit for companies, it's doing less public good.

If the Victorians had used the same short-sighted approach in their day we would have no sewers built as answers to health, and housing would mean being still crammed into slums and tenements but we would have multi storey PFI funded Hospital wards full of Cholera and Smallpox victims getting intensive medical care to keep them in existence!

frame1 profile image
frame1

in same boat, now slipping into depression but dont want to admit to doc or will say'all in my head' yikes

cloud1 profile image
cloud1

Same here(like hundreds of others);the doc wont diagnose/treat my hypothyroid cos my tsh /t4(low end)are within the stupid 'range';despite the fact that i have exteme high levels of thyroid antibodies.(have u had antibodies test?)and have been suffering with hypothyroid symptoms since end of my first preg 13 sodding yrs ago.sorry but it does get to me ;that i have been suffering that long and am basically slowly dying because of nhs incompetance.I am forced to consider self-med;and am about to order adrenal home test first of all.i am not giving up hope but it is all v confusing;the info about this illness and knowing what is best for me.would go private if had the money.am going to look into the charity that gives u a free referral for a second opinion( from an nhs or private doc) its supposed to be for people like us who r misdiagnosed or failed by our docs.

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