Update 17/11/22 : Oh gosh perception can be a deceptive thing. I think I owe an apology to my practice. Looking back over my medical record online I came across this graph today. It shows my TSH test results from when I changed to this practice. I appear to have had more than my fair share of tsh tests along the way (some of these may be results of private testing I have shared with my GP and others whilst under the care of a consultant endocrinologist 2015/16.
But the graph surprised me by the extreme peaks I appear to have in my tsh results. I have known when my results were 'high' but until just now I have never realised how out of range some of them have been. Some of the time when <1.0 I was taking ndt but that doesn't account for all the <1.0 results. Is this just typical Hashimoto's results I wonder?
(If sharing this pic is not ok please let me know & I'll delete it. I thought it was the best depiction of my journey over recent years)
Apologies for asking so much in the last day or so. I've only just picked myself up enough to regain my interest in life and being as well as I can. Thank you for bearing with me as I relearn things I once knew.
I just read another post and its replies. One stated to have the twice yearly nhs testing - at least that's what I think I read (please forgive me if I read that incorrectly)
My sister in law (a couple of years older than me) began to feel tired and insisted on full blood tests with her GP in the same health authority as me. Her TSH was slightly raised and she was started on 25 micrograms Levothyroxine (now up to 50 several years later)
I'm almost 40 years into my Hashimoto's diagnosis and have felt rough for most of it. I am on 175 micrograms Levothyroxine
She also has a diagnosis of osteoporosis (following breaking a small bone) and is tested at least 6 monthly by her GP (usual tsh and free T4 test). She remains symptom free
I, meanwhile, am only able to access once a year. The endocrinologist I saw several years ago acknowledge in a letter to my gp that I have significant symptoms. These symptoms remain and have worsened.
Are we to expect testing by nhs once or twice a year? I will have paid for 2 full thyroid and vitamin checks privately this year and would like to know what I might expect from my gp in the way of routine testing (This after nearly 40 years of asking for more frequent testing). On the occasions I have managed to have more than one test in a year I've had to have a gp telephone consultation before they have been able to agree to my request)
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Shebbie
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I believe my GP practice offer a routine thyroid test once a year, usually around my birthday. That said, it never includes a FT3 unless my TSH is suppressed so pretty useless really. Also, I have other hospital appointments where they sometimes run a thyroid 'panel', also not including FT3. So basically it's down to me to pay to get my own FT3 when I need it.
usual NHS protocol is just one annual test (often just TSH . sometimes TSH + fT4) for a patient on stable dose of Levo.
(By this they usually mean "TSH is in range on that dose " and the patient still being symptomatic is not necessarily seen as a reason to check more often... quite often they don't believe any remaining symptoms are thyroid related once TSH is in range ... so while you may get a retest if you have an appointment about the remaining symptoms , you may sometimes have to push them quite hard to do it , and put evidence under their nose about 'optimal TSH levels'. The labs also have cost restrictions imposed on them to minimise 'unnecessary tests.. so for example if a previous TSH result was in range, they are instructed to refuse a repeat TSH request within erm .. 3 months ? i think .. not totally sure if this applies to those on Levo , or just to the 'undiagnosed' )
They should also retest minimum 6 weeks after a dose change, to see the effect of new dose . often they will suggest doing this repeat test @ 3 months.
For someone with osteoporosis , they may perhaps be checking more often than annually to make sure TSH does not become supressed . as they believe (often incorrectly) that a supressed TSH on Levo will worsen the bone situation.
But to some extent it's probably rather individual dependant on GP / practice ... i'v e only ever been called in for annual TSH / fT4 testing .. often it's more like 18 mths / 2 yrs unless i want it earlier ... but i've usually been given an extra one if i went in with symptoms that they didn't know what was causing them .
hey Shebbie, my GP thought 25mcg and results ‘normal’ after 12 week blood test was evidence I was cured and put me to 12 month testing.
Luckily advice here to advocate for myself, (as I had awful symptoms) I learned to be a nuisance without caring, ignore the gaslighting, ignore the passive aggressive ’normal’ you must be a hypochondriac vibe and quote evidence from NICE guidelines ‘continue to titrate upwards every 6-8 weeks until patient feels well’ meant that I was able to argue and increase to 50mcg, then 75 and now 100mcg.
However, as my surgery have no clue about timings of blood tests nor ever test T3 I send off to monitor my health for £26 the week before my review is due and then email the results through before I speak to the gp. Someone has even added my last MMH private blood test results to my nhs records! The GP didn’t know about private blood testing being so easy. She was asking me all about it last appointment.
My surgery also wanted to test/review every 12 weeks, for 75 and 100 I went back to them at 8 weeks with evidence, blood test and a clear request. I did this online and had a quick call with whoever was available. You can do it your way and push for faster treatment.
I also chase every prescription and question every recommendation, I’m sure I’m a right pain but I am DONE with damaging and poor quality healthcare provision.
My top tip is be very persistent about your symptoms, those life limiting symptoms. The service is there for people who need treatment and we do, the more demand the more we advocate and educate the better it will be for those behind us.
My last call with my favourite GP, she said …. I understand you are a very intelligent woman, but you need to trust my experience, I told her that two of her colleagues had given me incorrect diagnoses and made me very unwell on separate occasions, and I’d been given incorrect meds by a pharmacy years ago that could have led to cancer, I’d been left on a child’s starter dose, I’d been advised I was ‘normal’ when almost bed bound and I trust no one. She apologised and agreed to always be willing to talk things through- and remains fave doc! There are some good ones out there.
This makes me reflect on how I was part way through my own 40 year journey with this disease. I used to battle with them as you do.
Something about getting old has made my fire go out. The last 3 years I have been in survival mode trying to resist the enormous pressure from my gp to receive a vaccination I couldn't countenance. (my mum died following a flu jab from Guillain Barre syndrome). I explained to the practice that their perpetual texts and phone calls for me to get a covid jab were causing me ptsd - flashbacks to sitting with my mum as she struggled for life on a ventilator. They told me there was no risk of GB with the covid jab and now here we are with many suffering that precise effect from taking the jab. I'm certain I would have reacted similarly.
So, for me, my focus hasn't been on my hypothyroidism. But now I feel stronger for the fight and so will return to finding what's best for me and finding ways of getting it. My gp regards me as 'different' that most patients because, like you, I always prepare for consultations. I even bought them a copy of a book on B12 deficiency but I guess no-one every read it.
It's encouraging to hear about your wins along the way to wellness. I hope you retain your fight for the long journey that this disease requires. I'm sure, with your spirit. that you will.
Thanks for your lovely reply. It's good to be among friends
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