moving the goalposts

[fiftyone]

I don't have the figures but my daughter's normal thyroid levels are dropping year by year. Hypothyroidism is a family problem. I was diagnosed in my early 40s. In spite of this she is not being prescribed a supplement. She says they keep moving the goalposts, so just as she reaches a level which doctors recognise as needing a supplement, they revise the level down. She is in reasonable h ealth but does get tired quickly. I feel so helpless to do anything but I'm sure she would benefit from some levothyroxine.

[Lalatoot]

Fiftyone As I'm sure you'll understand we would need to see results to know which goalposts are being moved and what has been tested.

[greygoose]

Just one or two points, to be clear:

- by 'goalposts', I take it you mean the ranges? Ranges are not set by doctors. They are set by the manufacturers of the machines that analyse the blood, taking local population averages into account. Not a brilliant way to do it, but it's the only way we've got at the moment. So, different labs have different ranges, and occasionally they change when the lab gets a new machine.

- by 'supplement' I imagine you mean levo? It's not a supplement. A supplement tops something up, like vit D or iron, etc. Levo is thyroid hormone replacement. It replaces the hormone our thyroids can no-longer make by themselves. And, eventually, that reduces the TSH, which means that the thyroid stops producing hormone - goes to sleep, so to speak - and you are entirely dependant on levo, or whatever you're taking, for your thyroid hormone. Calling it a 'supplement' is confusing.

But, as Lalatoot says, we do need the numbers - results and ranges - to understand what is going on with your daughter.

[fiftyone in reply to greygoose]

thanks a lot for the info. My terminology may be a bit 'loose' but we are talking about the same measures etc. Of course I mean hormone replacement, rather than supplement. Interesting that the labs set the ranges. When my GP changed labs, I noticed my T4 suddenly shot up to about five points above the new range. This was confusing as I felt no different and my T3 was the same. My dose of levo remains the same so there must be something wrong with the new range.

[greygoose in reply to fiftyone]

Well, without seeing the numbers, I can't comment on that, but apart from the usual - i.e. ranges are rubbish, anyway - I doubt it was a problem with the range.

But it's because of all these different ranges that we convert the numbers to percentages for comparison. If a result is 50% through one range, in a test with a different range, it should still be 50% through.

[Charlie-Farley in reply to fiftyone]

Hi Fiftyone

Just jumping in and want to say there is probably nothing wrong with the range per se. This can happen with a new lab (therefore different equipment) in other instances perhaps a instrument change, if the old equipment wore out, or a recalibration- a process that checks the instrument for accuracy and precision (won’t bore you trust me it is a bit ‘dry’ 😂).

Any which way, if all doctors did as they should they would ask you about your symptoms and only use the blood tests as a guide (informed by your symptoms or lack thereof) they would be doing their jobs.

We all sit in a different place in the range (or out) when feeling well. It is a poor doctor who treats the lab work over treating the patient, but this frequently happens as they do not know any better.

Also the fact in the NHS they rarely test enough to be useful- private tests become ever more important.

People keep telling me the NHS will not accept private blood tests. Some in the NHS do. If you look at my profile I have some self advocacy posts on there as to how I got to a full therapeutic dose. 😉👍

SlowDragon and greygoose give very good advice and information. I got the info dump at the start of my journey- I did a link a day 😂👍. This forum is why I’m well.

[Hedgeree]

Hi fiftyone,

Would your daughter join the forum? It would make it easier for members to offer guidance.

I know (like many others on the forum) how hard it can be to get the GP to recognise that you have a thyroid problem.

As others have said you need to post any of your daughter's current blood tests and their ranges so that suggestions can be made.

[fiftyone in reply to Hedgeree]

Could you give me the right link for anyone who wants to join the forum?

[fiftyone in reply to fiftyone]

don't worry if you haven't got it. I can ask elsewhere. This page might not be the right one.

[Jazzw in reply to fiftyone]

Just send her a link to this forum. At the top of the page there will be an option to “Join”—you won’t see this option as you’re logged in already but she will.

healthunlocked.com

[fiftyone in reply to Jazzw]

Thanks

[SlowDragon Administrator]

She needs to get FULL thyroid and vitamin testing

When hypothyroid low vitamin levels are extremely common

When vitamin levels are low TSH tends to reduce, making it even harder to get diagnosed

Essential to maintain OPTIMAL vitamin levels

For full Thyroid evaluation you and your daughter need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and …..once on levothyroxine…last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[DippyDame]

Adding to what has been said above... follow SlowDragon's advice re FULL testing....anything else is conjecture.

The following may help...

thyroiduk.org/if-you-are-un...

thyroiduk.org/if-you-are-hy...