NHS testing methods

Hi all,

I have recently gained access to my test results record via our surgery online access, including Thyroid tests which began in September 2003. It appears that only Serum TSH were carried out. However my recent test also included a Free T4 result. Have posted results at bottom.

Is it fair to say that these results really don't give anyone any real information about my Thyroid over the years other than a number within a range? Was it reasonable for the Dr's to claim everything was 'normal' if they had no other results like T3 and T4?

Secondly, is NHS testing vastly different to any private testing done?

This may sound like one of those 'duh' moments and clearly a single TSH result is not enough! But what are the general differences - is it simply a question of money/time/lab staff/time within NHS budgets/constraints?

Lastly, should/do Dr's take notice if you present a private test that screams 'Underactive Thyroid' and take steps to refer you to an Endocrinologist specialist?

Oh, and can anyone recommend a good specialist or Endo team in Cumbria/Lancs/Northumberland area please? Or further afield, say Glasgow/Edinburgh or Manchester way?

Thanks very much!

THYROID TESTS DONE -RESULTS BELOW ( based on normal range 0.3-4.5 mu/L)

Sep 03 1.42

June 04 1.69

Nov 04 2.0

Feb 06 1.84

Mar 09 1.96

Jul 13 2.89

May 14 2.3

June 16 2.69 & Free T4 13.6 pmo/L (range 11-22 pmol/L

[Clutter]

Otto2016,

TSH only testing will confirm or rule out primary hypothyroidism but it does miss a diagnosis of secondary hypothyroidism where TSH may be low-normal with FT4 below range.

Your TSH has been rising steadily and TSH >2.0 indicates the thyroid is struggling to produce T4 which is low in range. However, NHS will not diagnose hypothyroidism until TSH is over range or FT4 is below range and even a private endo is unlikely to diagnose primary hypothyroidism when TSH is <3.0.

Supplementing 200mcg selenium is good thyroid support and you can also buy a thyroid supplement like NutriThyroid

As long as accredited labs are used there should be no difference between the accuracy of NHS and private tests. It is budget constraints which limit the testing one has on NHS.

If a private test confirms hypothyroidism your GP should either replicate the test to confirm the result or treat you with Levothyroxine. Hypothyroidism is usually treated in primary care. GPs will usually only refer patients who aren't responding to treatment or have unusual results the GP feels requires specialist investigation.

Email [e-mail] for a list of member recommended endos.

__________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Hidden in reply to Clutter]

Hi Clutter

I have an appointment with my Dr this week to discuss latest results but am seriously considering a private test to delve deeper if NHS won't. It is deeply frustrating and depressing to have symptoms ongoing and getting worse.

I have heard from a friend that Selenium is beneficial so good to hear that confirmed.

Louise's email address is helpful too.

Thank you for your response

[Clutter in reply to Hidden]

Otto2016,

It's quite widely thought that symptoms may precede abnormal blood tests by months, years even.

Private testing isn't going to show that your NHS tests have missed anything. You can get FT3 which NHS hasn't tested but FT3 is very unlikely to be unduly low with your current TSH and FT4 results. You can also get thyroglobulin (TgAb) and thyroid peroxidase antibodies tested which will confirm or rule out autoimmune thyroid disease (Hashimoto's). Evidence of Hashimoto's won't get you treatment for hypothyroidism until TSH is >4.5 or FT4 is <11.0 but it will enable you to make dietary and lifestyle changes which may slow progression to hypothyroidism.

Protocols for treating hypothyroidism make it very unlikely your GP or an endo will make a diagnosis based on your current thyroid levels. You are far more likely to be offered anti-depressants even though there is no blood test showing Prozac deficiency.

If symptoms include musculoskeletal pain, fatigue and low mood ask your GP to test ferritin, vitamin D, B12 and folate. Low levels and deficiency can cause symptoms very similar to hypothyroid symptoms.

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

[Hidden in reply to Clutter]

Hello again

My symptoms do include muscle aches, fatigue, low moods, as well as many other physical and emotional signs related to low Thyroid. Lately my hair has started to fall out quite badly and over the past 12 months I have started to get pins and needles in my arms and hands

I now know I am low on the Vitamin D scale so will be asking about that later this week.

Unfortunately my Dr refused to do any other tests when I saw her a few weeks ago. For now I am resigned to remaining perfectly 'normal' and 'healthy' as far as the NHS are concerned.

Your comment about Prozac made me laugh - I would say yes please if it will make me feel better!! Unfortunately it would not address the core issues nor solve them.

I am open to changes in my lifestyle and diet if it will help and will certainly look into what I can be doing. Good suggestion, thank you.

[Clutter in reply to Hidden]

Otto2016,

Ask again about having B12 and folate tested. Pins and needles in your hands and arms can be due to B12 deficiency.

b12deficiency.info/signs-an...

If you know what your vitD level is post it here. You can buy your own supplements, you don't need a prescription.

[Hidden in reply to Clutter]

Thank you for the link - will look at that.

Vit D was 37 nmo/L (range 25-150 nmol/L.)

Not rock bottom but towards the low end. It has been suggested that I take K2 with any Vit D supplements.

The only other thing that flagged up red in my blood tests was GFR calculated abbreviated MDRD which I understand to be an indicator of renal function.

result was 76 ml/min/1.73m2

Normal range: 90-120 ml/min/1.73m2

Thanks for your help.

[Clutter in reply to Hidden]

Otto2016,

37 is pretty near rock bottom. I'd supplement 7,500iu D3 daily for 8-12 weeks then reduce to 5,000iu for 12 weeks and retest. Members advise taking D3 with K2 to prevent calcium from leaching from bones and teeth I think.

GFR 76 indicates mild loss of kidney function.

kidney.org/atoz/content/gfr

[Hidden in reply to Clutter]

Thanks. I would be interested in knowing where you would recommend getting supplements from? Would Nutri be a good place - I know they do have good products and although a bit pricey. THat said I clearly need to start putting something back in the engine and am learning to say to myself that I am worth it!

[Clutter in reply to Hidden]

Otto2016,

I buy most of my supplements from Amazon.

[mardiray in reply to Hidden]

Check out the Vitamin D deficiency UK group, they have a list of good ones to take and best places to buy them, amazon is not always the cheapest place. Also I forgot to say, do not supplement with any b12 or folic acid if you are asking for a blood test as that will skew your results and you won't get far with the doctor. Also fast for 12 hours prior to test.

[Cassiericc in reply to Hidden]

Otto2016

I know this thread is old but wondered if you got anywhere? Facing a similar thing thanks

[marigold22]

I agree wholeheartedly about TSH results not giving the full picture on the state of one's thyroid. However, having now got my medical records since the date I was diagnosed with very underactive thyroid (TSH 10), it's now clear that through the years only TSH was checked - BUT even that was ignored. On many occasions my TSH was over range and zero was done about it. Fuming - again.... thank goodness I can rant here!!!

[Hidden in reply to marigold22]

Hello Marigold22

Fume and rant away!! Looking on this site it is clear that the whole issue of Doctors, results, symptoms and the complex world of Thyroid etc brings out a huge range of emotions and frustrations.

Have you had much success in moving forward with any diagnosis? If so, how did you manage it - by sheer determination or finding a sympathetic ear?!

I have decided I have had enough of being fobbed off, having such depressing symptoms and feeling 20 years older than I am. It's just not right and not good for my family either.

Keep smiling and little steps onwards and upwards!

[marigold22 in reply to Hidden]

Thanks Otto2016 for your kind words. Yes I have moved forward and now aged 64, I feel better than since my 20's. Through sheer b....y determination, false hope, mistakes (I overdosed by mistake & the docs were fuming but didn't care when I was undermedicated), etc etc. Hundreds of hours of reading, researching, this amazing site of course, buying T3 from abroad as back up to put my mind at rest, recently adding zinc & selenium which have had a hugely positive impact, going gluten free. I'm now putting together my legal case to sue the NHS for 35 trashed years (for both me and my son), despite people here saying don't waste your time and energy. I want a watertight case on no win-no fee, and have decided even if I win the lottery next week I will continue with it in order to pave the way for others.

[Hidden in reply to marigold22]

Well if you win the Lottery, and it's 'the big one', send a little my way won't you !!! Could do with a *fizzy wine on tap* set up for those moments when you just need a pick-me-up! It's good to know that you are on a better road and able to cope with things in a more positive and healthier way. Good for you!

[marigold22 in reply to Hidden]

Apologies today having re-read my post to you.... I had a relapse and felt very adrenal stressed. It seems even though I consider myself "well", we can teater sometimes. x

[SlowDragon Administrator]

Private tests look at all thyroid levels AND check both types of thyroid antibody -TPO and TG - you can have high antibodies in one sort or both. NHS rarely tests TPO and almost never tests TG antibodies. High antibodies means thyroid is autoimmune Hashimoto's - the most common cause of hypothyroid. You can have normal TSH and still have Hashimoto's

Also low levels of B12, vitamin D, folate or ferritin can all give similar hypo symptoms, and are also commonly low levels with thyroid issues. So these all need checking. Acid reflux is also common due to low stomach acid, leading to poor levels of vitamins. Gluten intolerance also a possibility.

Many of us here have had to resort to private tests to work out what is actually going on. TSH on its own tells you very little.

- see thyroid Uk

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

Personally I use Blue Horizon thyroid plus eleven finger prick test. Easy to do at home - post back - emailed full set of results 2 days later

If you read posts regularly on here you will learn a lot........

[Hidden in reply to SlowDragon]

Hello SlowDragon

thanks for your comments.

My Vitamin D is on the lower end of the scale so will definitely talk to her about that and what to get. But she wouldn't test for B12, folate or ferratin or look into why my hair is falling out so badly. Ho hum.

As much as anything it is the battle to get answers that is so frustrating. For such a long time I have been made to feel my health and wellbeing is unimportant and not worthy of further examination. *Sigh*

Will look at Blue Horizon and tests. As you say, it may provide some answers that NHS is refusing.

This has been a very helpful site so far and a great source of information. Feel there is hope!

Thanks again

[Bluedragon]

Hi, as explained, you really need to get those tests done. Have a look at symptom list for B12d and if have any neurological symptoms - such as your pins and needles!- go bk and complain to practice manager stating you will hold them culpable if you get permanent damage. 😬

[mardiray]

Seriously get your B12 and folate level checked because those symptoms you have are also very common symptoms of b12 deficiency. Be aware though that your blood result does not need to be below the lower cut off point for in range results, just being on the low end is enough, although you will struggle to get treatment then. Check out b12 deficiency and make sure you get your results of any test printed out with lab ranges. Most doctors will not diagnose b12d if you are in range as most of them have only a little, if any, knowledge about it...I have much experience of that...so dig deeper and maybe look at the Pernicious Anaemia/B12 deficiency group on FB (16,000 members) as they have a vast store of knowledge. I and my five daughters have this condition, and I my self was diagnosed severely deficient at cell level but with 'in range' serum b12 levels, so don't just accept the "It is normal" reply. Good luck.