Bit of a moan and help needed: It has taken... - Thyroid UK

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Bit of a moan and help needed

serenfach
serenfach
28 Replies

It has taken 6 phone calls to the surgery to get them to acutally print the results of a recent blood test. I asked for them to be printed and was told to "pick them up after 5" last week. I then found out the surgery shuts at 5. It is 7 miles away and there is no public transport. I then called in the next working day and was given a print out of last Decembers results.

Is this incompetence or obstruction?

I finally got them today, 12 days after the request. The GP said "you are only just below" for Vit D (25 in a range of 30 to 300) so that is OK!!!! Folate is "fine" at 3.3 (range 3 to 20). I bought my own. I have now found out the GP has given me a prescription for Vit D - 400 something or others for just a month. Now that is incompetence!

I wonder how many other peoples blood results are "fine" as they have not had the results....and they carry on being ill?

One thing that has jumped out at me are the thyroid results and the comments on the results from the hospital.

"As with thyroxine along, be guided by TSH. Short half life of T3 means that its measurement is not usually recommended in this context". It was all over the form that I am taking NDT but with GPs reading this comment on tests, is it any wonder they think T3 is meaningless? I would like to send the "Consultant Clinical Scientist" (whose comment it is) some papers to change her mind - any ideas? Just imagine if we can educate her, it may spread...

Thanks all for your invaluable and continuous support - it means so much!

28 Replies
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Hillwoman

Definitely send her some papers, along with a few choice observations about her misinterpretation of your results!

I live a similar distance from my surgery, and I've found that a GP practice in a sparsely populated rural area can get away with a lot of rule-breaking and bad behaviour. The PALS officers who cover my area admitted there was almost nothing they could do to bring a monopoly GP practice to heel. And since we know on the forum that GPs generally dislike releasing patient records, perhaps it isn't surprising you've been given the run-around.

3 likes
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Espeegee
Espeegee
in reply to Hillwoman

I think I would move beyond PALS and on to the Area Health Authority, a local councillor or MP. As a monopoly GP (I'm assuming the only one for miles?) he is answerable to those who employ and pay him. He has responsibilities he can't just ignore because it suits him, or he and his practice are sloppy, like providing test results for which he isn't allowed to charge. Does he have online access or is that something else he hasn't bothered to set up?

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Treepie
Treepie
in reply to Espeegee

AHA’s were abolished years ago . Now it is the CCG ‘s that run the areas.

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Espeegee
Espeegee
in reply to Treepie

Fair enough, I can never remember which is which.

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Treepie
Treepie
in reply to Espeegee

No wonder, reorganisations every few years at great expense seem to be the way the NHS gives the illusion of progress.

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SlowDragon
SlowDragonAdministrator

Presumably vitamin D in measured in nmol......

A result of 25nmol is deficient and requires a LOADING dose prescription of 300,000iu over 6-8 weeks . So that's 5000iu per day for 8 weeks or 7000iu per day for 6 weeks

Vitamin D should be retested again at end of the prescription course

Local CCG guidelines

clinox.info/clinical-suppor...

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs.

Frequently with Hashimoto's we need higher dose than average

Folate is very low. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Do you have Low B12 symptoms?

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

healthunlocked.com/thyroidu...’s-role-in-sleep-the-gut-b-vitamins

3 likes
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vocalEK
vocalEK
in reply to SlowDragon

I had to *sigh* when I read "Routine testing for at risk groups should NOT be undertaken." Frankly I believe that everyone could benefit from having their vitamin D level checked at least once. Couldn't hurt!

NORW: There was a footnote for this statement, which led to assets.publishing.service.g... .

I read that document and found this statement: "The National Diet and Nutrition Survey, demonstrates that up to a quarter of people in the UK

have low levels of vitamin D in their blood, which means they are at risk of the clinical consequences of vitamin D deficiency." I found no justification for the refusal to implement routine testing--especially of people in "at risk" groups.

1 like
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serenfach
serenfach
in reply to vocalEK

I agree. The excuse is that the test for D vits is more expensive. I do wonder how much more expensive it is down the line when the GP tests you for all sorts of other things, sends to you clinics for stuff you do not need, writes prescriptions for drugs that are not needed or wanted, loss of work days etc. So short sighted!

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vocalEK
vocalEK
in reply to serenfach

Much cheaper than an antidepressant, for example.

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MissGrace

My heart sinks when I hear about what was advised on your blood results about TSH. This is coming from a ‘Consultant Clinical Scientist’ who has never met you, knows nothing about your symptoms, other illnesses or issues, medication, your unique physiology and biology, reaction to Levo, conversion etc. This generalised cr*p printed on blood results will be leading to a lot of people being kept in the ill-zone by GPs who follow the guidelines.

It is an absolute scandal. It makes me want to scream! Please contact them, send documents, complain, go to the lab and insist on seeing this person, tweet on their twitter feed, put the info and your outrage on social media - anything! If you have the energy! 🤸🏿‍♀️🥛

7 likes
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serenfach
serenfach
in reply to MissGrace

Ideas for documents needed. Any medical papers etc. I do not intend to let this go.

I am not stubborn or anything, but a friend did say about me once "when you did your heels in, all you can see is the top of your head!" :)

1 like
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MissGrace
MissGrace
in reply to serenfach

Try these for starters. My dad always said: ‘The squeaky wheel gets the oil.’ A mantra I try to live by - never put up and shut up if you know it is wrong.

bmcendocrdisord.biomedcentr...

thyroidpatients.ca/rational...

rcpe.ac.uk/sites/default/fi...

thyroidpatients.ca/2018/12/...

sciencedaily.com/releases/2...

🤸🏿‍♀️🥛

1 like
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MissGrace
MissGrace
in reply to serenfach
1 like
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Lora7again

I had a vitamin D level of 7 when I first became ill and the doctor didn't spot it. If you sign up for your medical records on line you will be able to read all your results and consultations for the last 10 years. The law says you are entitled to read all of your results and your doctor will know this.

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serenfach

Unfortunately with my surgery you can only book appointments on line. I dont think they have any intention of upgrading this either.

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Jnetti
Jnetti
in reply to Lora7again

You mean your doctor actually had your vit D tested?!!! I asked at least 3 times and request was not refused, just ignored.

But to be fair, my local doctors' isn't too bad in many ways, and they do seem to have some understanding that thyroid is complicated and needs individual treatment.

Wish I could say the same for the local hospital endo who refused a referral request from my surgery on the grounds my results were in range! Which was the precise reason for the referral because I still had hypo symptoms!!!!

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serenfach
serenfach
in reply to Jnetti

It did take me cornering the very young new GP and virtually beating him up to get him to order the test. He gave me the form and I added the folate and Vit B tests myself. Odd how our writing is so alike! :)

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Jnetti
Jnetti
in reply to serenfach

"Odd how our writing is so alike!"

:-D :-D :-D

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HashiFedUp

If you use the app/website ‘patient access’ -and the surgery does - you can view blood test results there. That way you don’t have to ask for them. That’s how I get mine. I pass them straight to my endo so my gp isn’t really involved! Works better for me to be honest as gp’s don’t always know much about Hashimoto’s!

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Treepie

The practice should be placing results online by now .Ask them why they are not up to date with the national requirements,

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serenfach
serenfach
in reply to Treepie

Two local GP practices closed, and a few thousand were transfered to "my" practice. They are swamped, with waiting times for an appointment around 6 weeks. Unfortunately the only other practice in another town is in the same boat. There are no dentists at all. I doubt very much that the practice is going to upgrade the patient software any time soon.

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Hillwoman
Hillwoman
in reply to serenfach

I do wonder about the GP shortage. I used to hear both from members of the profession and a chief officer of the now-defunct Community Health Council that self-employed general practice has always been considered a 'cushy' option compared with being directly employed as hospital doctor. Perhaps the way GPs are now paid per 'individual target achieved' has made some practices financially unviable. Whatever the reasons, there seems to be a significant shortage of primary care in many regions.

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Treepie
Treepie
in reply to Hillwoman

The pension issue has led to many early retirements and some career changes.

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HLAB35

In your shoes I'd be ordering private labs as your local one is extremely 'unreliable' to put it mildly. Look at Seaside Susie's advice on taking Vitamin D and work from there. It'd make sense to take all the cofactors to help vitamin D absorb well including magnesium and vitamin k2.

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Jnetti

"the GP has given me a prescription for Vit D - 400 something or others for just a month. "

I was given a vit D prescription - with calcium.

This means I can't take enough of the tablets to make any real difference (prescription was 2 tablets 2 x a day, total only 800iu) because of danger of calcium overdose. I don't need calcium anyway, and there was some recent research suggesting that this kind of combination tablet can increase the risk of a stroke etc.

So still have to buy my own.

But at least I don't have problems with results printouts. The receptionist does them on the spot.

Your GP's surgery seems doubly incompetent (resemblance to doubly something else is intentional ;-) :-D )

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vocalEK
vocalEK
in reply to Jnetti

My cousin called me to ask for help in paying her medical co-pays. She complained that the calcium pills prescribed by the nurse practitioner were "horse pills" that she couldn't swallow. I asked why calcium was prescribed at all and she didn't know. My guess would be that due to her age (73), the NP was thinking calcium is required to keep the old lady's bones strong. So much medical illiteracy in the U.S. as well! I'd be willing to bet that her Vitamin D levels are in the tank, and asking for them to be tested will probably cost more than she can afford. They also have her on baby aspirin and a statin drug.

If I were to purchase some Vitamin D +Vitamin K MK7 for her, what dosage would be safe, given that we don't know her Vitamin D level?

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serenfach
serenfach
in reply to vocalEK

SlowDragon has given a very good answer to this at the top of this thread. Another point with calcium is to get to strengthen bones, a weight bearing exercise is needed, and that can be difficult for elderly people. Even if it is lifting a shopping bag with a bag of sugar in it a few times to above waist level a few times a day, or climbing stairs can help. Bottles full of water make handy weights. It all helps.

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DippyDame

It's a minefield!

Yesterday I picked up copies of labs going back 20 years and couldn't believe what I read. At one stage I had a TSH of 24.5 which was signed off as satisfactory....I could go on!

Like everyone else here I wish we could educate medics

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