Why don’t doctors listen😢

[PrincessAnnie]

So after calling today,after being told on Monday that a request for a copy of my blood results would need to go to the doctor,I now have them,as the girl I spoke to today said she didn’t know why I was told that and that she would just print them off😤

As I suspected I haven’t had a full thyroid panel done,just the usual bog standard test🙄honestly it’s like banging your head off a brick wall!

I spoke to a mental health nurse,that’s the stage I’m at,after being at the end of my tether,and I told him I wanted a full thyroid panel done which he was meant to relay to the doctor.

I can’t see anything in the other full blood count I’ve had done,that relates to vitamins, except for Iron so I’d appreciate any help or advice on that aspect🙏

Thyroid Bog Standard Results

Free T4 18.0 Normal Range10.0-22.0

TSH 3.06 Normal Range 0.27-4.20

[SlowDragon Administrator]

What time was test done Test should be 9am latest

Think you took levothyroxine before test?

You now know last dose levothyroxine should be 24 hours before test

Assuming you took levothyroxine before test Ft4 is false high result

TSH is far too high for someone on levothyroxine

Obviously no Ft3 tested

Or folate, ferritin, B12 and vitamin D

Next step is to get FULL thyroid and vitamin testing done via Medichecks or Blue horizon

Only test early Monday or Tuesday morning, before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

[PrincessAnnie in reply to SlowDragon]

Thanks for your help once again🙏I actually had the test done in the afternoon,and yes I had took my levithyroxine.I’ve printed out the guidelines you gave me so thanks for pointing that out.

I’m going to call the doctors in the morning and see why I wasn’t given a full thyroid panel,if I get no joy with them I’ll definitely be getting them done through medicheck.

[SlowDragon Administrator in reply to PrincessAnnie]

So if test was done in afternoon, TSH likely higher at least around 4 if tested correctly in morning

[PrincessAnnie in reply to SlowDragon]

Who comes up with the ranges,If it’s saying in those guidelines about it being between 0.5 to 2🤷‍♀️

[meme in reply to PrincessAnnie]

The range is set by testing the thyroids of as little as 100 people from the area who do not have thyroid disease. The range is then an average of these readings.

[tattybogle in reply to meme]

The range is set by the manufacturer of the test 'platform' (machine) . eg Beckmann -coulter , Abbott, Roche , Siemens and others.

So e.g. (totally made up numbers, can't remember the real ones off hand )

Abbott make a machine that is calibrated to fT4 range [7-14]

Beckmann-Coulter make a machine that is calibrated to range [ 8-16]

....somebody else makes a machine that is calibrated to [12-22]

These ranges are like the 'factory settings'

When the machine is bought by a lab, the lab THEN applies the 'local adjustment' TO the factory settings.

It is this 'local adjustment' that is derived from the blood samples of local people (who are not supposed to have thyroid disease.)

So if they buy an Abbott platform with factory setting [7-14] .. the range might end up being [7.9 -15.1] once the local adjustment has been applied.

A different lab in a different location might buy an Abbott platform [7-14] and end up with range [6.9-14.2]

or at least this is how i understand what goes on.... it's a bit hard to find out properly.

I got the impression that 'attention to detail' on the local adjustment part of the process can be 'a bit sketchy' to say the least.

ie. might not be very many people at all,

might not really live in local area ( just happen to work in the lab ),

might or might not be patient with something else wrong with them ,

might or might not have an undiagnosed thyroid issue ,

, and once they've done it , it might or might not be updated from one decade to the next.

[Charlie-Farley in reply to PrincessAnnie]

Hi PrincessAnnie

I’d put money on you getting no joy re getting tests done by surgery- if they say yes labs refuse anyway. Don’t stress yourself out and get straight on to doing a private test as advised by SlowDragon .

Make sure if you are taking any supplements with biotin in you stop taking them a week before the test. They affect the assay , but no doctor or nurse has ever told me this - I have the wise folk on the forum to thank for that 😊👍

[PrincessAnnie in reply to Charlie-Farley]

Thank you,I’ve already ordered a test,the doctor is going to test for other things,diabetes etc,I finally got a doctor that was interested in what my symptoms actually were😤

[Charlie-Farley in reply to PrincessAnnie]

Brilliant

Work with them when they are receptive and around them when they are not - good for you 🤣👍

[SlowDragon Administrator]

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

[Partner20]

Firstly, it may be that between your initial call to the surgery and your collection of the results, the GP had reviewed them and authorised their release. Secondly, there is a "received in error" comment at the end, just wondering if that is relevant. TFT in some areas, like mine, and, obviously, yours, is TSH and FT4. In others it is only TSH. The test you are missing is FT3, and it may well have been requested by the GP but refused by the lab as the other results are within range. For most labs, including my local one, specific reasons have to be given before the FT3 test request is accepted.

[PrincessAnnie in reply to Partner20]

Thanks for your advice,the doctor informed me the lab would only test the FT3 if the other two were out of range,I don’t know why the other doctor didn’t tell me that,she probably wasn’t aware.That is fully saying if this was received in error please contact the lab.

[Kauaii]

I'm not an expert, but I have been dealing with Hashimotos for about 4 years. The TSH levels are very unreliable indicators of where you are in your therapy. The Free T4 and Free T3 levels are very important. I found that getting my TSH very low also brought on severe fatigue, which to me was surprising. In my opinion, your Free T4 looks within a good range and might be why your Dr. isn't increasing your Levo. dose. I also felt better when I went on the brand name Synthroid rather than the generic Levo. even though they're supposed to be the same.

[PrincessAnnie in reply to Kauaii]

I was told today that hashimotos is an old fashioned word and they don’t really use it anymore😤I had positive anti bodies when I was first diagnosed,which I was unaware of until a doctor told me once when enquiring about getting my anti bodies tested,I was overactive to begin with.Going on the fact I had positive anti bodies when I was first diagnosed I was told I probably did have some sort of auto immune condition🤷‍♀️

[tattybogle in reply to PrincessAnnie]

Lots of Doctors don't use the term Hashimoto's . They more commonly refer to "Autoimmune Hypothyroidism" (or just ignore the autoimmune bit totally and write "Hypothyroidism" (~ since they already know the usual cause of hypothyroidism is autoimmune )

Technically " Hashimoto's Thyroiditis" is only correct for cases where they had a goitre. as that is the kind that Dr Hakaru Hashimoto first described. healthunlocked.com/thyroidu...

Lots of people with Autoimmune Hypothyroidism don't ever have a goitre, and technically they have "Ord's disease" .. the kind that Mr Ord first described .( But you'll be lucky to find a Doctor who's ever even heard the term Ord's)

Autoimmune Hypothyroidism nearly always has over range Thyroid Peroxidase antibodies (TPOab ) these don't actually damage the thyroid , but high levels of TPOab do show that it has been damaged.

Autoimmune Hypothyroidism often starts with a short period of mild hyperthyroidism before slowly going hypothyroid .

This is not 'true hyperthyroidism' like that caused by Graves Disease (also autoimmune),

Graves has different antibodies which make the thyroid continually produce too much T4/T3 (TRab ~Thyroid stimulating hormone Receptor antibodies) and often has some TPOab as well.

[PrincessAnnie in reply to tattybogle]

I went underactive after having radio iodine treatment to treat the overactive thyroid,I’m assuming I had the antibodies when I was first diagnosed with the overactive thyroid,that’s what I’ve gathered from what I’ve been told🤷‍♀️No one can seem to give me a definite answer,I’m being referred to an endocrinologist so I’m hoping they’re a bit more helpful than the doctors,I was due to see mine last February but it got cancelled due to covid and I’m still waiting for another appointment,he’s retired now which I’m quite glad about as I found him to be very unhelpful and quite rude.

[tattybogle in reply to PrincessAnnie]

If you have Graves disease they should have hopefully tested for TRab to confirm it before doing RAI.

Usually its an Endo who orders this test,

GP's don't always seem to be allowed to order it .

GP's usually just test TPOab , these are found in both autoimmune hypo and quite often in Graves too . But just having positive TPOab doesn't prove you have Graves .. you need TRab for that .

Whichever one was tested .. it will be in your records somewhere.

So , anyway .... back to the present , Since your latest TSH was 3 .06 , is you Levothyroxine dose being increased ? or do you feel well on the dose you are on ?

If you currently have symptoms of hypothyroidism then your GP doesn't actually need to see any result other than your latest TSH of 3.06 to see that your Levo dose should probably be increased by another 25mcg.

Please see my reply to this post (4th reply down ) healthunlocked.com/thyroidu...

It contains 4 or 5 references written FOR GP's advising them to treat hypothyroidism with enough Levo to keep TSH below about 2 ish . Show them to you GP.

[PrincessAnnie in reply to tattybogle]

I have no idea what the antibodies were I had,I didn’t even know I had them until last year after enquiring about antibodies,I was just told that I had an over active thyroid and that radio iodine was the best treatment,I’ll make a note to ask about that.They’re saying I’m in range so they haven’t even suggested changing my dose,I seem to be getting both over and under symptoms,I often get told I don’t look like a hypothyroid patient as I’m so thin.

Thanks for that I’ll definitely check out those references,I did mention thyroid uk today and got told that these organisations don’t really go on facts🙄I really wish I had thought at the time to ask if she could provide me,the best place,to access the research that the NHS go on,I’ve got that noted down for next time.

[tattybogle in reply to PrincessAnnie]

don’t really go on facts🙄

Well .. very many of us on here know enough facts to have a passable stab at explaining to you what 'deiodinase' means , and what all three of the deiodinase's do . .... i'll bet you 50p she's never even heard the word and probably can't spell it .

(deiodinase's are involved in removing one iodine atom from T4 to turn it into either T3 or Reverse T3, or from T3 to turn it into T2 etc )

and if we do ever have any trouble with our 'facts' we can always ask our scientific advisor who worked on the invention of the fT4 blood test.. the one that you Doctor sends off to test your thyroid.

I never looked like a hypothyroid patient either ,or at least my body didn't . just my face did.. i had no significant weight gain , ever .

Most hypo's have significant weight gain, but not all .

Similarly most hyper 's lose significant amounts of weigh, but not all.

There are far too many generalisations about thyroid disease .. mostly made by people that have never had it themselves.

[PrincessAnnie in reply to tattybogle]

I did have a little chuckle to myself when she said it,I just replied that,well there people just like myself who are actually living with a thyroid condition and are basically left to find out things for themselves,and that they’ve probably spent more time researching the condition than most scientists.I sat and thought to myself today,what if there wasn’t internet,where would I be😢it’s actually quite a scary thought😳

Thank you so much for all your help,I really do appreciate it🙏

[buddy99 in reply to tattybogle]

It seems like TPO is the most known type of antibodies and is always mentioned everywhere. There are also the Tg antibodies which are only slightly rarer but soo many people, including doctors, do not seem to have heard of those antibodies. Doctors have told me that there is no evidence of autoimmune disease because I have NO TPO. But the TgAb are very high. Just thought I throw that in because the lack of that knowledge now drives me nuts. Like we don't have enough problems without TgAb not being recognized.

[PrincessAnnie in reply to buddy99]

Hey at least you’ve been told you don’t have an auto immune disease,I have,some sort of one🤷‍♀️I don’t think I’ve ever researched that one🙄

[buddy99 in reply to PrincessAnnie]

Well, if being told that you have no autoimmune disease when you actually do I would call that being misdiagnosed. That can have serious consequences; maybe less in terms of health because nothing much can be done medically about lowering antibodies at this point. But there is, for example, research that TgAb can lower quality of life and if the doctor does not know that then there is a problem. And it is also an insurance problem. If autoimmunity is falsely diagnosed as a mental health issue, then those who are in a profession where burn out is high (like doctors, veterinarians and such) they can not be insured for that event, even though it is not the real problem and maybe never was. And, by the way, I have been told by knowledgeable doctors that I have an autoimmune disease and the contrary by incompetent doctors. That's how I learned about the reliability of doctors (or lack thereof) and the importance of getting informed by means of all reliable resources possible (and what they are).

[PrincessAnnie in reply to buddy99]

I’m hoping to get a knowledgable doctor someday😢I attended a mental health nurse at the beginning of January whose very first option was anti depressants🙄I told him they weren’t going to help me,I need someone to listen to me,I asked for a full thyroid panel which he said he could arrange,I never got it.He called me two weeks ago to say there wasn’t really any point in me going into see him until after my bloods,I hadn’t had them done at that time,I’ve not heard from him since!

Living with a thyroid condition can be a very lonely place to be at times.

[buddy99 in reply to PrincessAnnie]

Thank goodness for this forum to alleviate some of this loneliness. I had to get counselling after dealing with an incompetent and exceedingly rude (almost abusive) doctor. And I really, really wish all of us here could have a wonderful doctor (like the one who first diagnosed me) but they are so very rare. I sure hope you will get a solution to your challenges soon. Be strong. Hang in there. And hang with us.