Frustrated and disappointed NHS only do TSH....

[CS1964]

Hi people of knowledge and information...I say that because whilst having my very first annual thyroid review by the practice nurse...yes...The Nurse....not the G.P.. I was advised that she has only to do the bloods for TSH... When I explained that I would really appreciate having my. TSH, T3, T4 and antibodies..etc ....she said ...they aren’t required. Our NSH don’t do anything other than TSH. I informed her I got them done last year...she replied yes you only get them done the once......I then advised her about this wonderful Thyroid UK website, where for the last year, I’ve been reading posts and learning and recognising some symptoms.... she said you shouldn’t read that stuff...then goes on to to tell me about her sister who was ill because she got her information from GOOGLE....I reiterated Thyroid UK....is not Google....but alas it fell on deaf ears....she took bloods for TSH.....then she looked at the screen and said your last TSH was 1.62....so you will probably be fine this time......I said I was aching in my muscles...told her I can’t even read a book for long or use a pen as my hands and fingers ache or go numb....I told her I can’t carry shopping bags or plates without dropping them and that I struggle to get out of bed in the morning and can’t concentrate on tasks...when I open my mouth the biggest load of nonsense slips through my lips...as I forget what I’m going to say as soon as I think it....she looks at the screen again......it says here you are Celiac, diagnosed last year... it might be that that’s causing your symptoms......I respond that I have been eating gluten free for nearly a year... she says all knowingly as she looks away from the screen....well it must be that because your TSH has fallen in each visit....I need to see the G.P.......well just wait until your blood result comes back next week and if you are not happy about your result...you can ask for a phone consultation.....What, you mean the G.P doesn’t want to see me face to face? ..... I then ask if I pay for a private test can you take the bloods and I will pay .....she repeats , just wait for the result and phone in next week.....shocked and stunned...I walked back to my car...to get to work....still feeling, tired and exhausted, breathless, achy all over....further confused as I try to recall what she said in order that I can tell my lovely husband who is going to phone me to find out how I got on.....the same lovely man who has had to sit on his own most nights, when I fall into bed at 8pm because I’m so tired.

Sorry for the rant....I won’t even bother to phone for the bloody result...can you tell me how I go about contacting blue horizon...do they prescribe? Is it easy to get proper medication...

[DeeD123]

Bless you. Some nurses and doctors like to think they are god. Blue horizon do blood tests. You send for a kit and do it yourself then send it back. They do not prescribe just analyse. Someone will answer you soon as to what to ask for. Can you not ask for an appointment with your doctor face to face . If yes then I suggest you do it and bypass that idiot nurse . Good luck

[CS1964 in reply to DeeD123]

Thanks. I’ll wait and see what the test result says...

[Aurealis]

So sorry you’ve had that experience. But perhaps you’ve suggested a way for us all to protest there. What if none of us turn up for annual monitoring at all? Will GPs lose some of their pay for monitoring long term conditions?

[CS1964 in reply to Aurealis]

Would it do any good? Fighting the pharmaceutical organisations , when our NHS and medical practices beat the same drum... peddling the meds approved by big pharmaceuticals bring more financial reward....shocking

[trelemorele]

I think medichecks is cheaper than blue horizon.

They also have discount often.

Just Google either.

If you go on holiday to favourite British destinations I.e Spain, Portugal, Greece I'd advise you to book full hormonal check (estrogen, progesterone, testosterone, shbg, cortisol etc) whilst there - it will be MUCH cheaper and you'll know how's your body coping.

All hormones are entwined and mine were all over the place due to thyroid and Hashi.

Good luck. I don't count on NHS either anymore.

[CS1964 in reply to trelemorele]

I am still just learning. Good to know about the tests abroad though thanks

[Marz]

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

The above link takes you to the main website of this Forum. I have linked you to About Testing where you can read the companies and tests available. 1000's on this Forum use theses companies - who like you have been let down by the NHS

[CS1964 in reply to Marz]

Thank you Marz I’ll have a look

[Jazzw]

I’ll go one step further and directly link to the 2 main companies many of use for blood tests.

medichecks.com/thyroid-heal...

bluehorizonmedicals.co.uk/t...

I’ve used both and can highly recommend.

[CS1964 in reply to Jazzw]

Thanks Jazzw

[CS1964 in reply to CS1964]

I had a look jazzw do you get written results? it says no at notes?

[Rmichelle]

Hi i used to get full thyroid panel done-requested by my gp but until around 3 months ago only the tsh kept coming back, the labs will only do tsh at my local hospital!! My Endo is out of my local area-i see him at a west midlands hospital, i have to get my full thyroid panel requested by him now, it does mean i have to travel 40 miles every 4-6 weeks which is a train journey and taxi but at least i get a full picture of whats going on as tsh alone is utter useless!!😨 good luck!!

[CS1964 in reply to Rmichelle]

Thank you Rmichelle...I have no words..can’t believe that health professionals don’t want you to get better 😕

[Rmichelle in reply to CS1964]

Sad but true-everything is down to money!we just have to keep fighting for what we need. 😊😊 take care.x

[CS1964 in reply to Rmichelle]

Thanks, you too...stay well x

[shaws]

Blue Horizon are a lab and don't prescribe but many members source their own through dissatisfaction with their doctor or inept advice. As far as I know they were told to only test TSH and T4 but your practice has even withdrawn the T4.

We cannot tell anything through the TSH alone except where it is in the range and I have no idea how these people were trained as it would seem they ignore all clinical symptoms (don't know any) and believe a TSH which is somewhere in the range (up to 5 in the UK but not diagnosed until it reaches 10) and by that time people are so very unwell and symptomatic.

The Thyroid Stimulating Hormone is from the pituitary gland and rises when the thyroid gland is struggling. It is deemed in the UK that 10 is for diagnosing and in other countries it is 3+. Why do we lag behind so much and it is bad enough to have inept doctors/nurses/specialists who keep us unwell and some have even lost their livelihoods.

The TSH only inform us of where it is in the range, it tells nothing of the symptoms:

thyroiduk.org.uk/tuk/about_...

Many members have improved or recovered 'Doing It Themselves' with the help of members.

Phone up either Blue Horizon or Medichecks and make sure you are well hydrated before drawing blood. It is pin-pricks. Some get their blood drawn in the surgery or both labs can direct you to where to get it drawn if you don't want to do pin-prick yourself. Make sure you are well hydrated a couple of days before and draw blood early as TSH is higher than. Don't eat until after but you can drink water.

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

thyroiduk.org.uk/tuk/about_...

Many members have recovered/or improved their health by Doing It Themselves with help from members. Also by going it alone you can source other thyroid hormone replacements if you wish.

[CS1964 in reply to shaws]

Thank you so much Shaws. I will wait for my result next week and ask for a phone consult to see what comes back...I’ll ask if they do tests privately and if not I’ll then contact Blue Horizon or medichecks.

Feeling poorly all the time is difficult when I’m working, I used to walk around 65 kilometres a week...now I can’t get out of bed without a struggle...I have a job with responsibility and have a hard time to remember things, the brain fog is debilitating...so I feel I’m always on the back foot.....and it has affected my self confidence.... I have gained so much weight that I have had to buy more clothes......I will stay hopeful.....and if I need to pay privately for medication then that’s exactly what I will do... I am so pleased to have this forum to turn to...thanks everyone x

[shaws in reply to CS1964]

I find it amazing that doctors don't realise how many clinical symptoms there are of hypo but are willing to prescribe another medication for the disabling symptom rather than making both FT4 and FT3 are towards the upper part of the range.

[CS1964 in reply to shaws]

Hi Shaws my GP called me today and said she was worried about my TSH result...she said it was off the scale. I was at work when I got the call. She asked me to come to the surgery. She said that my TSH was 47 I thought she was joking....so I asked again, she said 47 and my FT4 was 8....

I said I wasn’t supposed to get my FT4 done...she said as my TSH was abnormal the lab did it.... I wasn’t able to get a print out as they close early Wednesday for training.... she said she would send a script straight to the chemist 100mc to be added to my existing 100 .....therefore to double my dose until another review... she wants to give it 12 weeks.... she also mentioned my Coeliacs May be affecting absorbing and that she will refer me to hospital if my levels don’t improve.

I will try and get my results after work tomorrow in order to post them here for the group to comment. I am just exhausted...I know nothing about results other than what I read here, so I’m not sure what I should make of the result. I told her that I was fatigued and thought I was having a heart attack yesterday.....I didn’t say anything to my hubby as he would just worry...I have pains everywhere...my hands and fingers are agony, my tongue feels blistered too....

[shaws in reply to CS1964]

Don't worry too much as my TSH was 100 when diagnosed and was started on 50mcg.

I think, and am not medically qualified, that to add 100 to 100 might overdo it and usually increments are lower.

Please copy and past your latest comment onto a new post so that you will get more answers and do mention Coeliacs.

[CS1964 in reply to shaws]

Thanks for your reassurance.. i really appreciate it...I will get my printed results tomorrow, I have had a family emergency and just getting into bed...I will put on a new post thanks again

[Fruitandnutcase in reply to CS1964]

Wow! Just think - think you were right all along! I hope you get a chance to tell that nurse yu were right all along.

Good that your GP has leapt into action. Hope you feel a lot better soon.

Keep a daily diary and jot down your blood test results, what meds you are taking and how you feel at each level if / when they increase or decrease. Just quick notes, you don’t need to write an essay but date them. Keep all your blood test results in there too along with any questions you want to ask and any interesting articles you find. You will find it very useful.