TSH Testing fraud

[Auds]

Has anyone had a TSH test that has come back "within limits" and so despite your many symptoms you are told "all normal" therefore receiving no treatment? It has been my experience and I am gathering other people's experiences. Also what is the lowest/highest TSH level you have had before treatment has been offered?

[Marz]

Unfortunately this has been the case for millions of sufferers throughout the world - since the early 70's when the TSH test came into being. This problem is exacerbated as Hashimotos is the most common thyroid condition and often the TFT's can be in range with High Anti-bodies. If anti-bodies not tested then people do remain ill with in range results....

I was diagnosed here in Crete with in-range TFT's but High Anti-bodies and subsequently treated with T4....

[Auds in reply to Marz]

Hi Marz I have read many examples of people getting treatment in Europe when they are on holiday yet at home they are told "all normal!" Do you live in Crete? Has the treatment worked? Did you see a UK endocrinologist before diagnosis? Despite being ill for 7 years, my antibodies have only been tested twice (once privately) and both times normal but I haven't felt normal in years and now my body is struggling in other ways - I have CFS and fibro. It is a scandal although glad you are now getting better!

[Marz in reply to Auds]

Yes I have been living in Crete since 2004. ( You can view my profile by clicking onto my name ) I was diagnosed in late 2005 by the local GP based on TSH FT4 FT3 - all within range - but high Anti-bodies and a scan revealing nodes. I was a on a low dose of T4...and found it difficult to increase. I saw Dr P in the UK and followed his protocol. Later moved to T4/T3 combination and have been T3 only for over two years. I have learnt much from this forum and the many people here about B12 - VitD - Iron - Folate - Ferritin...so its difficult to know which item has improved my health. I suspect all of it - and 2/3 classes of yoga I teach a week I also think of having an auto-immune condition that has affected my thyroid as the Crohns came first.... rather than a thyroid condition.

Not everything is perfect - I am still carrying extra weight - have Crohns and a back that could be better behaved However mostly there is a huge improvement in all areas.....

[Hidden]

I think it might be a shorter list to collate, of those who haven't had that experience. If you go on any of the Facebook thyroid groups you will find the same frustrating experience.

[Auds in reply to Hidden]

You are absolutely correct! I hope to highlight this issue in a newspaper article soon as so many left to suffer.

[ClaireandBosch]

Yep! 5.4 (0.5-5.5) and shouted at that I didn't have a thyroid problem despite a year of symptoms. Had Genova tests and then private endo who told GP I have Hashimoto's and she should treat me if over 2.5. On 50mcg Levo and despite TSH of 4.6 still I had to argue with GP to get raise to 75mcg. Next test due in 6 weeks. My GP just looks at lab range and signs it off as 'Normal – no action' - unbelievable how hard I have to fight her!

[Auds in reply to ClaireandBosch]

Hello ClaireandBosh can you tell me more about the Genova Tests and where did you see your private endo? Incredible how you have to argue with GP who really don't understand this very complicated medical condition after seeing an expert. Mind you when I had a TSH of 0.2 I was still told "normal" by a hospital endo and never treated. I am writing a newspaper article about this issue based on my own experience to highlight the problem. A friend of mine has opposite problem, her GP keeps upping her dose as TSH not changing but when she wants to get in to see him to discuss it, she is told at least 8 weeks to wait for appointment!! And yet if any of us wanted a gastric band...well!

[ClaireandBosch in reply to Auds]

Hi Auds,

I booked Genova Diagnostic tests after reading about them on thyroiduk.org.uk

From reading posts on forums, support groups like Thyroid UK, researching NICE guidelines and reading some science papers I knew my symptoms over the past 18mths were both hyper and hypo (in fact probably over past 15yrs or more) and as I had obtained copies of my previous blood results and one test spiked at TSH 8.4 (0.5-5.5) then I knew that I needed more than a TSH result.

GP kept telling me it wasn't my thyroid so I couldn't ask for an NHS endo referral. I spoke to the secretary of an endo who works for NHS in Bristol but privately in Cheltenham. I explained I could not get a referral but gave all my symptoms and results to date and endo agreed to see me but wanted referral letter if Genova results showed anything. As the results showed TPOab over 1000 my GP wrote the referral immediately. She admitted she would never have considered it worth testing for antibodies (though I had specifically asked and she refused) and that she 'didn't know what to do with me'.

Still fighting to get tests and treatment that I want (still very symptomatic) but playing the long game. Much more hassle from her and I will ask for referral to NHS endo (but only because friend of a friend and she will explain I am not neurotic, don't have Munchausens and do understand how this works!). I may use private endo again but to be honest he was rather patronising.

In all of this I have seen my GP only once. First started discussing need for blood test with her in February (as requested by another NHS dept she had referred me to for ankle pain - she refused for 2 months!). Finally saw her at the beginning of July and she prescribed Levothyroxine on private endo's instruction. All other discussions have been me writing letters and her telephoning me.

I am lucky I have a science degree, know how to research and have free access to medical journals via a friend. Not everyone has those advantages. What most of us have in common is lack of concentration, confusion of thoughts, poor memory and a battle to get through most days due to fatigue and pain. What we need is correctly educated, supportive medical specialists who work with us and our symptoms, not over-worked broadly educated GP's who don't fully understand the endocrine system and cause stress by fighting against us with 'normal' TSH results whilst using outdated lab ranges.

Post a link to your article, I look forward to reading it.

[Auds in reply to ClaireandBosch]

Thank you for your detailed journey so far - mirrored by so many - but so eloquently put here! I too have looked back today at my early results and am so angry at being left untreated. My TSH got as low as 0.09 but still they didn't think it worth doing anything about. It eventually came within range and now sits on that bottom line at 12. I have suffered for 7 years without anything being done. My body has caved in due to the pressure and now I am left with chronic fatigue and fibromyalgia. As I am in my late 40s of course now they are pointing to menopause to blame it on not their own incompetence!!!

[claudiasmum]

When I was diagnosed my TSH was 35 and my GP told me I was "borderline" hypothyroid and prescribed 25mcg levo.

The next time I saw a different GP and she couldn't believe what the first GP had written in my notes about it being only borderline!

[Auds in reply to claudiasmum]

Yes Claudiasmum, it seems it is a form of medicine which is highly subjective (to the doctor/endo but certainly not the patient!) GPs are somewhat out of their depth and of course years ago you would have been under the care of an endo in a hospital, but (government budget) cuts are what they are, wounds for those of us left to suffer the consequences! Glad you have a good GP now!

[Hidden]

My last TSH was 5.37 range 0.3-5.00 and I was told no need for meds as normal and it would be checked again in 6 months. I have had symptoms for well over a year and in March 2014 I was diagnosed with fibro, RD & osteo. This week diagnosed with sjorgens & acid reflux which consultant said is probably from meds for fibro & RD. I have been asked if I want a gastric band which the NHS are willing to spend thousands £s on but not a proper thyroid test and meds which I believe would help me lose weight. No you cant win.

[Auds]

It is shocking! I am now suffering from Fibro and also recently diagnosed with Chronic Fatigue - how happy my endo was when I told him that. "Well that will be what is causing your problems!" I was ready to throttle him as I have been suffering for 7 years without any help from him - just an annual "check up" to be told "all normal, no further action." I too was outside the range but no concern from him. I have spent a small fortune seeking alternative help as none coming from NHS! I am writing about this for a newspaper, may I include your example? Will check with editor but don't expect will need to name you. Hope you can find a way to ease your symptoms.