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Thryoid experts are there any NICE guidelines to diagnosis?

(13 Posts)
nomadwantshome Wed 26-Sep-12 17:03:16

Also what is the best research to pull off to show my GP. TSH 3.24 t4 9. but GP says thyroid is fine. He says he's running out of test to do on me!

RockinD Wed 26-Sep-12 19:13:20

There are no guidelines - that's part of the problem.

However, you are clearly hypo - your TSH is too high and your FT4 is way too low.

You can get a book by John Tofts, possibly at your chemist, possibly from Amazon, where he says that your TSH needs to be around 1. It's published by the BMA, so difficult for docs to argue with it.

Otherwise, if GP won't play ball, ask for a referral to an endo who specialises in thyroid (not diabetes)


nomadwantshome Wed 26-Sep-12 20:26:30

I saw that book on amazon but I couldn't see any reference to the tsh levels etc so I decided to order this

"Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it"
Durrant-Peatfield, Barry; Paperback;

This guy is a doctor who went private after being disappointed with NHS.

I think I may get the toft book too though as I also noticed it was BMA approved.

nomadwantshome Wed 26-Sep-12 20:28:26

Also, will they refer me if I ask or do they have to 'agree' to refer me?

RockinD Wed 26-Sep-12 20:40:22

Be aware that the NHS will not take any notice of Dr P, or the other one, Dr Gordon Skinner. They will tell you that Dr P was struck off - even though he wasn't.

The good news however, if you choose to go that route, is that you can see Dr P privately without a referral from the GP.

It would be nice to think that if your GP cannot fix you, especially if they are leaning towards a CFS diagnosis, they would refer you without a fight.


nomadwantshome Wed 26-Sep-12 20:57:18

Defo get the toft book then.

Can you get flair ups too? I can pin point it to a couple of weeks ago and I feel like I've been hit by a cricket bat

MrsMellowDrummer Thu 27-Sep-12 19:34:28

Have you had your antibodies checked?
If you have antibodies present, it's an auto-immune issue, then there's no dispute that you have a dodgy thyroid, it's just a question of how damaged the thyroid is at present, and whether you need treatment.
If you're having flair ups, it's possible that you're have the auto-immune reaction. It's a good question for your doc at any rate.

tb Thu 27-Sep-12 20:38:20

Regarding blood tests, as well as TSH and T4, you also need to have T3 and combined T3 and combined T4, assuming that the others are the free T3/T4.

There is also this - here goes!

Questionnaire taken from Thyroid Power by Richard L Shames MD and
Karilee Halo Shames RN PhD

Physical Signs of Low Thyroid
These include:

Slow body movements and/or slow speech
Sluggish eye movements or slow pupil light reflex
Prominent bags under eyes
Abnormality in shape, size, consistency, or texture of the thyroid gland
Difficulty in swallowing on command
Skin that is excessively dry or rough
Water retention, especially in the area of the face
Slow pulse
Low blood pressure
Hard-to-elicit or slow-moving ankle reflexes
Loss of the outer one-third of eyebrows

Basal Temperature Test
Taking of early morning temperature while lying down immediately on waking. If average temperature differs from 98ºF by 1 degree or more than this could indicate a sluggish metabolism in the presence of other symptoms.

Self- Assessment

1Additional SymptomsAbsentAppearedDisappeared
Do you have:
Significant fatigue, lethargy, sluggishness, or history of low thyroid at an earlier age
Hoarseness for no particular reason
Chronic recurrent infection(s)
Decreased sweating even with mild exercise
Depression, to the point of being a bothersome problem
A tendency to be slow to heat up, even in a sauna
Constipation despite adequate fibre and liquids in diet
Brittle nails that crack or peel easily
High cholesterol despite good diet
Frequent headaches (especially migraine)
Irregular periods, PMS, ovarian cysts, endometriosis
Unusually low sex-drive
Red face with exercise
Accelerated worsening of eyesight or hearing
Palpitations or uncomfortably noticeable heartbeats
Difficulty in drawing a full breath for no apparent reason
Mood swings, especially anxiety, panic or phobia
Gum problems
Mild choking symptoms or difficulty swallowing
Excessive menopausal symptoms, unrelieved by oestrogen
Major weight gain
Aches and pains in limbs, unrelated to exertion
Adult acne, eczema or severe dry skin
Vague and mild chest discomfort unrelated to exercise
Feeling off balance
Annoying burning or tingling sensations that come and go
Experience of being colder than other people around you
Difficulty of maintaining standard weight with a sensible food intake
Problems with memory, focus or concentration
More than normal amounts come out in the brush or shower
Difficulty in maintaining stamina throughout the day

2Related conditions
Have you ever had:
Any other autoimmune disorders:
Rheumatoid arthritis
Sjorgen’s syndrome
Biliary cirrhosis
Myasthenia gravis
Multiple sclerosis
Crohn’s disease
Ulcerative colitis
Thrombocytopaenia (decreased blood platelets)
Prematurely grey hair
Anaemia especially due to B12 deficiency
Persistent unusual visual changes
Rapid cycle bipolar disorder
Raynaud’s syndrome
Mitral valve prolapse
Carpal tunnel syndrome
Persistent tendonitis or bursitis
Atrial fibrillation
Calcium deficiency
Attention deficit disorder
Neck injury such as whiplash or blunt trauma
3Family history
Have any of your blood relatives ever had:
High or low thyroid, or thyroid goitre
Prematurely grey hair
Complete or partial left-handedness
Rheumatoid arthritis
Sjogren’s syndrome
Biliary cirrhosis
Myasthena gravis
Multiple sclerosis
Crohn’s disease
Ulcerative colitis
Thrombocytopaenia (decreased blood platelets)

4Physical Signs
Have you or your doctor observed any of the following:
Low basal temperature in early morning (average of <97.6F or < 36.4C over 7 days)
Slow movements, slow speech, slow reaction time
Muscle weakness
Thick tongue (feeling of being too big for mouth)
Swelling of feet
Swelling of eyelids or bags under eyes
Decreased colour of lips or yellowing of skin
Swelling at base of neck (enlarged thyroid gland)
Asymmetry, lumpiness, or other irregularity of the thyroid gland
Swelling of face
Excess ear wax
Dry mouth and/or eyes
Noticeably cool skin
Especially low blood pressure
Decreased ankle reflexes or normal reflexes with slow recovery phase

Noticeably slow pulse rate without having exercised regularly
Loss of outer one-third of eyebrows

Scoring self-assessment – all categories
First question in bold – 5 points
All other questions – 1 point
5Mildly indicative of low thyroid – take action re care and feeding
10Somewhat suspicious for low thyroid – possible action obtain TSH level screening test
15Very suspicious for low thyroid – possible action obtain additional tests
20Likely to be low thyroid – possible action obtain all possible tests to aid diagnosis
>24Very likely to be low thyroid – possible action obtain trial of thyroxine regardless of blood test results

I do know that at one time, before they put such tremendous faith in blood tests, they used to diagnose on the basis of symptoms. Now they have all become blood test converts, and a test taken at 1 minute in time. IMVHO, if they treated diabetics like that, they'd all be dropping like flies.

You can tell I had real trouble getting a diagnosis. Bitter? Quite a bit, as I've got 10 stone to lose, and nothing seems to work, not even Cambridge Diet.

nomadwantshome Thu 27-Sep-12 21:42:49

Lots of info there, thanks. No I don't think anti bodies were checked so I'll broach the subject.
I've got a digi thermometer so I'm going to start taking my temps. Thanks for the questionnaire, I'll let you know my score. Eyes struggling to stay open now.....yawn....

tb Fri 28-Sep-12 08:52:51

I found it quite interesting - I have underactive thyroid on both sides of my family and my df had pernicious anaemia. My dh has sarcoidosis - so dd is cross with us as she reckons she's more at risk. My sil has neutropaenia - not on the list, but a possible one, too. Also I'm completely left-handed.

topsi Fri 28-Sep-12 20:20:04

wow tb hope you copied and pasted that!
thankyou for all the info!

topsi Fri 28-Sep-12 20:28:41

nowmad, my bloods are similar to yours TSH 2.87 and GP won't treat me. Have started on a supplement called NutriThyroid which I think has helped in some way. I am considering ordering ThyroGold which comes from the USA and contains both T3 and T4. I think in some situations you need to take your health into your own hands as the NHS won't hepl.
My symptoms are weight gain, tiredness, weakness as in my arms and legs hurt when I walk up stairs or pick things up, dizzyness on standing, poor sleep, depression.
Looking at the above list of symptoms I also have constant eye bags and tired looking eyes with droopy eye lids and my face goes puce if I excercise. I have given up excercise for now as it shatters me out for about 24 hours afterwards.
Good luck with it all.

nomadwantshome Sat 29-Sep-12 16:24:50

Have been reading my new book by dr Barry durrant. I think adrenals have something to do wih it too. He mentions nutri stuff so I'm going to goggle that, topsi it good to hear you think it might be helping.

Lots of research to do now. I'm not going back to gp until I have armed my self with all the necessary knowledge.

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