As yet to be diagnosed but......: Every visit to... - Thyroid UK

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As yet to be diagnosed but......

lily0175 profile image
12 Replies

Every visit to my GP in the last 15 years has resulted in GP noticing what he describes as a thyroid collar (a skin level rash on my neck) and subsequent blood tests all of which have always come back 'borderline'. I am now 52, and struggling just with everyday life. I have zero energy (despite being an active farmer for all of my life), have gained 3 stone since the onset of significant symptoms (tired, sad, hungry, sugar cravings, cold all the time even when others not, pain in every joint esp lower back, and brain fog - I have a maths degree yet can't now do simple sums nor spell correctly anymore). I am at my wits end as a GP friend of mine has told me that I probably do have an underactive thyroid but the level set to trigger medication is set too high to be of any real value to patients.

I feel like I am now constantly being a pain to my GP yet feel awful - no other meds being taken, HRT declined. How do I get a proper diagnosis? What do I need to ask for / insist on?

Any info or guidance appreciated. Thanks in advance.

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lily0175
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12 Replies
SeasideSusie profile image
SeasideSusieRemembering

lily0175 "a GP friend of mine has told me that I probably do have an underactive thyroid but the level set to trigger medication is set too high to be of any real value to patients."

How refreshing to hear that a GP actually agrees with what everyone here thinks and says!

So you realise that you are hypothyroid but you can't get diagnosed.

If you post your latest test results, with their reference ranges, members will comment.

It's always best to get a full picture and you may not have had all the important tests done. What you really need are:

TSH

FT4

FT3

Thyroid Peroxidase antibodies

Thyroglobulin antibodies

Vit D

B12

Folate

Ferritin

If you can't get them done with your GP then you can do a home fingerprick blood test from Blue Horizon (Thyroid plus Eleven) or Medichecks (Thyroid Check Ultravit)

bluehorizonmedicals.co.uk/T... (20% off today as a special Easter discount)

medichecks.com/thyroid-func...

lily0175 profile image
lily0175 in reply to SeasideSusie

Thank you for your super fast response - I have had the request into my GP for 17 days now for results so I am going to go in person tomorrow and persist and not leave without them - have 10 + years worth!

SeasideSusie profile image
SeasideSusieRemembering in reply to lily0175

That should be interesting Lily :) Do let us know of any bloopers or downright lies!

I'm not sure I want to see mine, I know for a fact they have got my son's allergic reaction to a tetanus jab down on my record, and one of my consultation notes says "Had a chat"!

Hopefully you'll get everything you need.

UrsaP profile image
UrsaP in reply to SeasideSusie

lily0175 If only your GP friend could help you get the tests you need! And is it worth asking this friend if other GP's think the same perhaps they should be voicing this opinion? Please, for all our sakes!

Surely after 15 years they should be at least referring you to someone else to do tests - hopefully full thyroid function! at the very least.

There is some brilliant advice on here - search and read all threads you think are relevant.

I was struggling for 35+ years and only found this forum in the last few months, I'm learning so much!

All the best...

lily0175 profile image
lily0175

Will keep you posted! And hopefully post results too.......

shaws profile image
shawsAdministrator in reply to lily0175

Blood tests for thyroid hormones have to the earliest possible and fasting (you can drink water} also allow about 24 hours between the last dose of levo and the test and take afterwards.

Tell GP you have had advice from the NHS Choices for information and advice on the Thyroid Gland and would like him to do the tests SeasideSusie recommends.

Get a print-out with the ranges and put them on a new post for comments.

lily0175 profile image
lily0175 in reply to shaws

Thank you for the info......

Marz profile image
Marz

What a pity GP's no longer go by clinical signs - ie the thyroid collar 😊 The body is trying to convey a message. I live in Crete and once heard about a Greek Doc who diagnosed a thyroid issue on seeing the two necklace type neck wrinkles .... I now see them everywhere !

Hope you soon find some answers and the treatment you deserve 😊

lily0175 profile image
lily0175

Repeat request for past blood test results to be made available to me.

Locum GP has ordered repeat tests but will not include either B12 or Vit D.....he says they will only complicate the results! Told him that I had sought advice from NHS Choices and he more or less laughed at me, said see you in three weeks once the results are available.....

humanbean profile image
humanbean in reply to lily0175

Three weeks??!!??

Wow, yet another sign that the NHS is in very, very deep trouble.

lily0175 profile image
lily0175

So these are basic tests from June 2015 -

TSH 1.67mu/L (0.35-3.5)

FT4 10pmol/L (8-21)

FT3 4pmol/L (3.8-6) comment normal no action

Ferritin 37ug/L (23-300) comment normal no action

Dr sees no point in testing B12 & D......

I will be interested to know what your thoughts on those figures are and will be interesting to see how they compare with the bloods being taken next week which should be more comprehensive (minus B12 & D)

Have managed to move my 11.30am blood test to 9.30 am - receptionists did not know about thyroid testing being done early and earliest bloods are 8.45 am any morning......ho hum.....

lily0175 profile image
lily0175

Would someone please be able to comment on the above results?

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