consultant says I haven not got a thyroid problem - Thyroid UK

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consultant says I haven not got a thyroid problem

carrieannsmith profile image
32 Replies

I feel sooo gutted that today to my first (and last) consultants appointment - he just went on my TSH . didnt care about all the other symptoms I get, or the fact I have fibro and that theres thyroid problems in the family. I cant lose weight thats why I went there...he said its prob due to the lack of exercise (cos of my fibro) but I said that if Im eating 1200 kcal a day surely by the end of the week I should have a weight loss, in which he agreed but no I still havent a underactive thyroid - I m at a dead end !!

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32 Replies
rosetrees profile image
rosetrees

Do you have your blood test results, with ranges? If so, post them here and then members can start to advise you on the way forward.

carrieannsmith profile image
carrieannsmith

FT4 9.0 (2011) TSH 0.73 (2011), FT3 5.4 (nov 2013) FT4 13.2 (nov 2013), TSH 1.64 (nov 2013) .

the only ranges I have is: FT3 3.5-6.5 and FT4 11-23

shaws profile image
shawsAdministrator

Some advice from Thyroiduk.org:-

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

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

Please note excerpt as you have a low FT4:-

FT4 = FREE T4

Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 10 to 24

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

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

carrieannsmith profile image
carrieannsmith in reply to shaws

Hi Shaws, I did my temp every morning but the consultant wasnt interested in it, :(

shaws profile image
shawsAdministrator in reply to carrieannsmith

Modern day doctors, I believe, diagnose only by blood tests - they don't appear to take account of clinical symptoms as they don't know them. They take no notice of low temperatures because they are unaware that it is yet another sign of hypo - excerpt:

"The normal core body temperature of a healthy, resting adult human being is stated to be at 98.6 degrees fahrenheit or 37.0 degrees celsius. Though the body temperature measured on an individual can vary, a healthy human body can maintain a fairly consistent body temperature that is around the mark of 37.0 degrees celsius....... or the slower the metabolic rate the lower the normal body temperature"

hypertextbook.com/facts/Len...

carrieannsmith profile image
carrieannsmith in reply to shaws

my temp in the morning is 35 - 36.2

shaws profile image
shawsAdministrator in reply to carrieannsmith

I have clicked on edit a couple of times now, it is just below the reply button when we have this narrow column.

Your temp is low. So I would say your metabolism is low = hypo. But that may be too simple for 'the powers that be'.

carrieannsmith profile image
carrieannsmith in reply to shaws

I have just asked the doctors for a second opinion.I just looked up the consultant I saw and he a specialist in diabetes!

shaws profile image
shawsAdministrator in reply to carrieannsmith

The majority are re diabetes. If you need an NHS Endo, louise.warvill@thyroiduk.org may have one near you and your GP can refer you to him/her.

carrieannsmith profile image
carrieannsmith in reply to shaws

Yes I contacted her today and got the list. Thank you for your help

carrieannsmith profile image
carrieannsmith

I didnt think consultants just looked at the blood test and that they should take in account all the other factors..!!!

anbuma profile image
anbuma

hi carrieann

they never used to years ago -always took symptoms into account.my dr actually told me he only looks at blood test results and not symptoms.is that why I have had all this agro for the last 3 years ?the rheumy I saw 2 Novembers ago did a blood test which I assumed was just for arthritis but it was for lupus and showed negative so he dismissed my symptoms which are clearly those of lupus

carrieannsmith profile image
carrieannsmith in reply to anbuma

Lupus... I know nothing about that, I will google it in a mo x

Clutter profile image
Clutter

Ask for a 2nd opinion from another endo, one that will take into account your symptoms.

Alternatively, request a trial of levothyroxine from GP or self medicate.

carrieannsmith profile image
carrieannsmith in reply to Clutter

I have left a message at my doctors for a second opinion.. I didnt know you can self medicate for thyroid x

helvella profile image
helvellaAdministratorThyroid UK in reply to carrieannsmith

You can self-medicate but it could be a difficult path to choose.

It is very important to try to read and learn lots about thyroid now - and only decide what to do when you have done so.

Clutter profile image
Clutter in reply to carrieannsmith

Self medicating is, or should be, a last resort and must be done slowly and carefully. There is a danger that self-medicating for the wrong disease/condition may mask the real cause of symptoms.

When NHS refuses tests &/or treatment self medication may be the only option if you're unable to afford private testing. Self medication or continued decine? It is Hobson's Choice.

Aurealis profile image
Aurealis

You are entitled to a second opinion under the NHS aren't you? Just choose consultant carefully

tarotreader profile image
tarotreader in reply to Aurealis

You don't always get who you ask for. I was to see a Dr Savage , he had left the hospital over 18 months ago yet the web page had not been updated ?

tarotreader profile image
tarotreader

Sounds like the treatment I got at a Mancheseter Hospital.

Refused to consider FT 4/3 or clinical symptoms, family history etc. Told I did not have a thyroid problem ??? Based purely on a TSH of .59 previous .42 (0.4 - 5.00) range .

Oh and he was a junior registrar with not speacialty.

carrieannsmith profile image
carrieannsmith in reply to tarotreader

Did u see another doctor?

tarotreader profile image
tarotreader in reply to carrieannsmith

Seeing dr Peatfield appointment moved due to his ill health :/ Once I get my printer scanner set up again will produce juniors very patronising letter !!!

Marz profile image
Marz

Please have your anti-bodies tested - Anti-TPO and Anti-Tg. Hashimotos is the MOST common form of thyroid illness throughout the world and is Auto-immune. So insist on a test for them. Also - in my non-medical opinion Fibro is connected to the auto-immune aspect of thyroid and other auto-immune conditions. ( Also based on personal experience ! )

I was diagnosed here in Crete in 2005 and all the results were in range - the TSH FT4 FT3 but the anti-bodies were high and a scan confirmed nodes. In the UK I would still be struggling for a diagnosis it seems. I still do not understand when there is a question mark hanging over a thyroid diagnosis that a scan is not requested. Treatment started with a low dose of T4. After years of tweaking and learning from this site I am on T3 only and doing well....

Lots to read under the heading Hashimotos on the RIGHT of this page - under the heading - Browse by Category....Wishing you well soon ....

Natalie_Edinburgh profile image
Natalie_Edinburgh

he should at least test T4 too as testing TSH only will not rule out secondary hypothyroidism

carrieannsmith profile image
carrieannsmith

Thank you everyone... I asked about secondary hypo and he just said no I havent got it!

I think I will ask for extra blood tests - antibodies for def,x

carrieannsmith profile image
carrieannsmith

Thank u, I know my B12 was 170. but never had the others done. I havent heard of central Hypothyroid.

helvella profile image
helvellaAdministratorThyroid UK in reply to carrieannsmith

The range for B12 does vary a bit, but at 170 you should be receiving injections of B12.

The following links should help with B12:

b12d.org

Charity supporting people with B12 Deficiency.

pernicious-anaemia-society.org

Charity that exists to provide Information, Help and Support to sufferers of Pernicious Anaemia and B12 Deficiency, their families and friends.

b12deficiency.info

An information hub site which brings together all the key sites for B12 deficiency.

Rod

carrieannsmith profile image
carrieannsmith in reply to helvella

Injections?!! thanks for your reply

in reply to carrieannsmith

Your thyroid won't work properly with a B12 that low, you probably have pernicious anaemia (PA) rather than a thyroid condition. Get that treated optimally (via B12 injections at a frequency that keeps your symptoms at bay) and you may find your thyroid results stabilise on their own. If they don't, then you could have a thyroid condition as well.

Rod has given you all the relevant links, please read up on this as much as you can. There is also a Facebook group here:

facebook.com/groups/1749289...

170 is extremely low, you would be getting treatment in my area (bottom of range varies from 130 to 200, both are set way too low). Also the test is unreliable anyway. What is the bottom of your range? You need the following tests as a minimum:

Anti-intrinsic factor

Anti-parietal cells

Folate (prob low as well)

Ferritin (prob low as well)

You can test negative for the anti-bodies and still have PA. You can also have a B12 deficiency for many other reasons, see here:

b12deficiency.info/what-are...

H x

sky00 profile image
sky00

sounds so familiar--same here doesn't care about symptoms and lack of quality of life-- is your endo in north west wales per chance--want to be really hacked off, check this out-- British Thyroid Association Executive Committee, March 2007--british-thyroid-association... feels like it's the dark ages all over again...this was recently touted to me as just cause- for not prescribing NDT how can they ignore all the wonderful docs that have done all the ( modern ) studies more recently.. frustrating grrrr

carrieannsmith profile image
carrieannsmith

I am asking for more bloods to been taken and Ive asked for an second opinion cos something needs to be done.

carrieannsmith profile image
carrieannsmith

Im in the south of England.

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