Rock and a hard place...: I had private blood... - Thyroid UK

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Rock and a hard place...

KLB24 profile image
21 Replies

I had private blood tests in Nov 16, which confirmed my suspicions of an under active thyroid.

I was put on 25mg of Levo, even though I didn't believe it was a high enough dose.

Today I have left the GPs in tears, as they are refusing to up my Meds and have said my symptoms are just 'one of those things'.

I've put on over 4st in just under a year, constantly tired, total loss of libido, dry hair/skin etc.

The GP suggested that I might want to see an Endocrinologist, but that was about it.

Having read a few threads, I wondering sourcing my own T3 would help?

I honestly don't know what to do anymore

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KLB24 profile image
KLB24
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21 Replies
ITYFIALMCTT profile image
ITYFIALMCTT

It's horrible that you're experiencing such distress.

Do you have much to lose by accepting the referral to an endocrinologist? Or did your GP mean privately rather than an NHS referral?

Do you have any recent blood work results to post so that some of the experienced people here might provide some suggestions for you? I know nothing of value to you - I do wonder if it might be a little soon to move to T3 if you've been on such a low dose of T4 that it's impractical to judge whether a reasonable dosage might turn the corner for you?

KLB24 profile image
KLB24 in reply to ITYFIALMCTT

Thanks for the speedy reply.

I'm going to see how long the NHS endocrinologist referral takes, and then look into private.

Unfortunately, the GP wouldn't give me a copy of my recent bloods and just stated everything was in the normal range.

She wasn't keen on repeating my prescription either, until I pushed it. Seems like a lot GPs have their head in the sand? The first one I saw was fab, but was just a cover

greygoose profile image
greygoose in reply to KLB24

She is breaking the law! You are legally entitled to your results under the 1998 Data Protection Act. There are steps you can take against her if she continues to refuse.

And to tell you that you're symptoms were 'just one of those things' is very unprofessional. Can you change your doctor? Because this one obviously isn't up to the job!

in reply to greygoose

Doctors do have the right to refuse patient access to records but you can appeal.

ITYFIALMCTT profile image
ITYFIALMCTT in reply to KLB24

If you have blood work results within the last 40 days then you are legally entitled to a copy of them. I completely appreciate that you don't want to be adversarial about it so you might want to say that you'd like a copy for your own records.

If you don't want to push it, can you manage to cover the cost of some more blood work? There's a post today about Medicheck's Thyroid Thursday offer.

healthunlocked.com/thyroidu....

cazza1001 profile image
cazza1001 in reply to KLB24

do NOT accept that - go into surgery and ask for a print out of your results from the practice manager - I was fobbed off for years - and have lived to regret it !

Your dose is really low ... get your results ( I hope they include T3 ) and re post on here with a new post for further advice !

p.s Not even sure you need an endo at this stage - just get results and ensure your meds and Vit/ mineral levels are optimum .

Alexandra987 profile image
Alexandra987

Your symptoms are absolutely NOT just 'one of those things'!! That's outrageous that they said that, I wonder if they would say the same if it was happening to them?

If you could post your most recent blood results with ranges that would be really useful, if you don't have them your GP's surgery will be able to do you a print out quickly and easily.

KLB24 profile image
KLB24 in reply to Alexandra987

Thanks for your reply. I'll pop into my docs tomorrow morning and get a print out of the results and post them

puncturedbicycle profile image
puncturedbicycle in reply to KLB24

If you want to try a different route, ring and tell the receptionist (in a calm and unremarkable way) you'd like a printout of your latest test results and ask when would be the best time to collect them. They may have to get them signed off by your gp anyway but it might be worth a try.

JMN2017 profile image
JMN2017

KLB24

So sorry to hear you are so distressed. I had same attitude from my GP y'day. I was really upset all evening, went to bed but too upset to sleep so got up and have been up all night sewing, to take my mind of it a bit. It's just not acceptable treatment. I'm so angry!!!

As ITYFIALMCTT suggests, please post your results so members can offer you some ideas, thoughts, advice etc. Without seeing your results (along with the relevant range and units), it's like looking thru pea soup ;) Would also be helpful if you could give some of your 'thyroid' history and Levo doses with time spans etc.

Hopefully, you'll be feeling less distressed before too long and then, with some help from here, be able to see a way forward.

I think it would be reasonable to be referred to Endo, but on NHS. You are entitled to ask for a 2nd Opinion, which is an NHS referal, although I doubt it would be an appt in the near future. You could ask how long to expect to wait to be seen; again, you're entitled to know that. I would also suggest checking out who to be referred to in your area before asking your GP to refer you/2nd Opinion, although I don't know if one gets a choice unless going Privately. You can only try.

Then, while you wait to be seen, you can decide if you want to take a different course of action, so giving yourself both options. You can always cancel the appt should you decide you don't want it ;)

{{{{Hugs}}}}

Kitti1 profile image
Kitti1 in reply to JMN2017

Hi KLB24 Sorry your feeling so rotten. We can identity with the way your feeling.

'Just one of those things' what guff ! They make my blood boil 😤

Try phoning the receptionist and asking for your results over the phone. My doctor has been reluctant in the past. With the usual they are normal rubbish. I'm sure the receptionists know that its your right to have the results. Mine didn't hesitate to give me mine.

Then post your private results and date, then recent NHS ones.

I may be wrong ( I'm reasonably new to all this too ) but I think starting on 25mg is standard. Then they build it up. Starting on a high dose would be a strain on your system.

Hope that helps

Jeannie profile image
Jeannie

U r not alone We r treated very badly. Endocrinologist is the correct person to see but a lot know more about diabetes. Uv really helped me today by reading your question. Today I feel suicidal (slightly exaggerates) but you remind me why and it's with good reason. I am bedridden just been diagnosed with Addison disease on top of thyroid n told same as you bound to have continuing symptoms despite medication. So we all need to look after each other!!! Try private if endocrinologist NHS no good and ask for natural thyroid it's cheap n could help I might have to try it again I stopped cos Endocrinologist said my pulse n pressure too high GPs not give T3 only Endocrinologist good luck

KLB24 profile image
KLB24 in reply to Jeannie

Jeanne, sorry to hear you're feeling so low.

Like you say, we're not alone and hope you never feel you are x

Rapunzel profile image
Rapunzel

I honestly don't know what to do anymore

Post your bloods. Have you had more bloods done subsequent to being treated (you should have done) ? Post those, too.

25mcg is like a spit in the desert, just a starting dose for the frail and elderly nothing more or less :(

Having read a few threads, I wondering sourcing my own T3 would help?

Please don't consider this route until you have exhausted the possibility of getting well on levo - and you're far from that end game. :)

KLB24 profile image
KLB24 in reply to Rapunzel

I have my original bloods (Nov 16) and have had 3 blood tests since. I'm going to pop into my GP surgery tomorrow and get a print out of the last 3, the post them on here.

My mother-in-law has been a nurse for 30+ years and was shocked about the Levo dosage I was placed on. She said the same as you!

Phoenix605 profile image
Phoenix605 in reply to KLB24

Try and take your mother-in -law with you to next appt if she is willing, having someone with you who has a clue can only help and make you feel more in control. She is probably used to dealing with the idiot brigade and will recognise (and hopefully challenge) the platitudes especially if your brain is a bit foggy or you are not very assertive in these situations - I either kept forgetting what I wanted to ask or what was glaringly wrong with the answer! Not all GPs in a surgery are the same, I went through 4 to find a keeper.

Last blood tests I rang for results to be told by a particularly officious receptionist they didnt give them out due to so many tests being done and the GP would contact me if any issue. I sweetly pointed out that I was legally entitled to them but if she wasnt comfortable giving them by phone I only live 5 mins away and could pop in. She very grudgingly gave up and told me, you could practically hear the steam when I insisted on the ranges too - suspect she didnt want me in a full waiting room giving other patients ideas 😱

Treepie profile image
Treepie in reply to Phoenix605

It is weird that they are so out of date .The results should be available for you on line.Wife had blood test on Tuesday morning ,for something else ,was on line today.

Phoenix605 profile image
Phoenix605 in reply to Treepie

I know, it would save them a lot of phone time, my dr was quite happy when i walked in with a plan of action (with my reasoning) based on my results and agreed with it. made the appt much shorter with no rushed decisions. I believe it is down to individual surgeries which bits they turn on and can only assume some feel threatened by the idea of clued up patients. I may have to darken the receptionists doorway with awkward questions😈

UrsaP profile image
UrsaP

I just wonder what it is that these GP's are trying to hide, when they won't allow us to have our blood results? I believe we are entitled to them through the Data Protection Law. I think I've heard somewhere, there is a clause that says they can withhold information if it is detrimental to our health...but why would seeing our own results here be detrimental???

My guess is that the tests are not as 'normal' as they would like and they are trying to avoid any questions/confrontation.

I generally do get results but notice that you have to be clear and ask for ranges too. My son recently asked for his and got a list of comments made by dr on computer, not actual results! He went back for actual results. Found liver function to be out. (Apparently better readings now than previous tests -he didn't know about previous one being out either!!!)

I feel that GP's are being discouraged from giving out results, as 'they' know that we are becoming more informed and we are likely to come back with questions, and 'they' are trying to fend off anyone considered 'borderline'. Our increasing awareness of our own health is highlighting the lack of knowledge in the NHS service. Only the ver rare, more 'open', GP's are willing to admit their limits and work with us rather than against.

I find it surprising that they are so surprised that more patients want their results, especially when these Dr's know they are letting the patient down. They want us to take more responsibility for our own health, and quite right - it should be a partnership, but when we do they don't like it!!

Rapunzel profile image
Rapunzel

More perverse nonsense. UrsaP you are quite right that many GPs seem to think that our blood tests belong to them. Or some over reaching receptionist. What a load of bull !

You are also right that the DPA ico.org.uk/for-the-public/h... enshrines our right to see our medical records. As I think I have previously written, your GP could only withhold (part) of your records if they felt that the withheld part would further damage your health. So...if my Dr Tool writes 'Rapunzel is skittering head first into full on fruit loop. As she will not take ADs, there is nothing I can do' { Now, like he would. He has the demeanour and SOH of Saddam Hussein :P } But anyways, he would doubtless see that in reading that was likely to result in giving me a fit of the screeching abdabs, he could legitimately refuse to give me that part of my medical records.

I told you he was a tool :D

UrsaP profile image
UrsaP in reply to Rapunzel

Very well put Rapunzel It was probably on your previous post that I saw and read about it.

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