Challenging the TSH Mantra - what to do next? (long post)

[carorueil]

Saw my endo last week : was told that she couldn’t 'in all conscience' treat a patient whose TSH was suppressed especially with increased risk of heart attack/osteoporosis (I argued this was less than 1% but was ignored). Was told that TSH is the ONLY physiological test that is accurate for ALL thyroid treatments: eltroxin/NDT etc. All the other thyroid hormone results (FT3/FT4) are ‘false readings’ even though mine had improved and antibodies decreased since last test. Saliva cortisol tests as ‘unproven’ scientifically so not of any use. I mentioned that I was very well aware of being in a thyrotoxicotic state having previously been overmedicated on Eltroxin resulting in weight loss, palpitations, heart murmur and seizure but that I currently had no such symptoms and felt well. I'd been on the same dosage of meds for 6-7 years (75mg ERFA) until a major stress trigger last year (structural damage to home, legal wrangles etc) but was told that this wouldn’t affect my thyroid. I was told that I had probably been ‘overmedicated’ for the last 7 years at 75mg (despite having ‘perfect’ results during that period!) Lupus diagnosis last year and topical steroid treatment ignored (I’m not too sure if this would have impacted on thyroid levels?) Splitting my dose was suggested which I think may be useful but taking last NDT dose 8 hours before doing blood test was of no use as both FT3 and FT4 results are ‘false readings’. I've never done that but am going to try this going forward to see. I was offered a recommendation to see another endo but was told that NO endo would prescribe my current dose for a TSH-suppressed patient. Regarding the TSH issue, I did offer a paper copy of the Scientific journal from June this year questioning the validity of TSH as a marker and was told that it would be read but wouldn’t change opinion. So now I find myself presented with an ultimatum: I either reduce my meds (and feel worse) or need to find another endo/doctor! Giving the Brexit situation I do not know whether UK prescriptions are accepted in European pharmacies (where I get my ERFA) – if anyone can advise me on this situation I would be very grateful ! So now I’m just trying to figure out what to do: the options in Ireland are very limited, likewise in France where I live. As my husband will be travelling to/from UK on a regular basis for work, ideally I would like to find a doctor in the UK who I can trust to help me manage my Hashi’s for the long term future (a lot of doctors I’ve ‘found’ online seem to be close to retirement age) all this would of course be conditional on UK prescriptions being accepted in the EU - which I don't know!

Thankfully I have enough NDT for quite some time so would appreciate any advice on UK prescriptions before I start 'sourcing' another doctor! thanks for your patience with my post!

[humanbean]

Saliva cortisol tests as ‘unproven’ scientifically so not of any use.

The NHS uses saliva testing for cortisol when Cushing's Disease or Cushing's Syndrome is suspected :

nhs.uk/conditions/cushings-...

Look under Tests and Diagnosis for references to saliva.

I think (but don't have proof) that they only use saliva for Cushing's testing in the middle of the night. The rest of the time I think they use blood or possibly urine.

This is a US page : csrf.net/understanding-cush...

This is another US page - see Step 1 : cushingsdisease.com/diagnosis/

Saliva tests are mentioned on this page from a UK organisation :

pituitary.org.uk/informatio...

[carorueil in reply to humanbean]

Thanks humanbean for your research links ,

To be honest I knew the appointment would be difficult but was surprised by how much was dismissed as being pointless/non scientific.. I think like many others who have tried to 'argue' with doctors we often fight a losing battle: she maintained the only accurate test for cortisol is the blood test (mine is seemingly perfect). A thyroid organisation was quoted (won't name it here) in her 'arguments'. For me my priority now is to try and find a solution to my problem: if I can find a UK doctor who will prescribe NDT and whether that prescription will be accepted in the EU! It really becomes exhausting that we have to do this much research to try and keep well ! thanks once again 👍

[humanbean in reply to carorueil]

The blood test for cortisol and the saliva test for cortisol don't measure the same thing.

I would argue that the saliva test is the best one.

Cortisol is carried around the blood stream by Transcortin and albumin, both of which can be referred to as transport proteins :

en.wikipedia.org/wiki/Trans...

en.wikipedia.org/wiki/Serum...

In order for the body to actually make use of cortisol it must be detached from its transport proteins.

When cortisol is attached to transport proteins it is referred to as "Bound Cortisol".

When detached from its transport proteins it is referred to as "Unbound Cortisol".

Cortisol measured in blood is measuring Unbound Cortisol + Bound Cortisol.

Cortisol measured in saliva is measuring Unbound Cortisol alone.

The cortisol measured in saliva is, in effect, "active cortisol", although that terminology isn't used.

A lot of people seem to assume that saliva cortisol isn't accurate or is of no use because they compare it to blood cortisol and get completely different results. But since they aren't measuring the same thing there is no reason why the results would be the same.

It is perfectly possible to have good results for blood cortisol and terrible results for saliva cortisol. This happened to one member of the forum, and she found out, by accident, that taking T3 normalised her saliva cortisol and massively improved her health in the process.

[carorueil in reply to humanbean]

Thanks Humanbean I remember reading Dr Peatfield's book and he recommended the saliva test for those exact reasons. My saliva cortisol tests have not been good (twice done this year). I did mention taking T3 with NDT but was told I wouldn't need 'more' T3... 🙁 I did get a 2nd opinion by another doctor this year but as consults are only online I don't see that as a long-term solution .

[humanbean]

This list of references from tattybogle could be useful in your dealings with your intransigent and out-of-date doctor :

healthunlocked.com/thyroidu....

Splitting my dose was suggested which I think may be useful but taking last NDT dose 8 hours before doing blood test was of no use as both FT3 and FT4 results are ‘false readings’.

Did the doctor use the phrase 'false readings'?

If someone takes their Levo or NDT at 8am and gets a blood test for Free T4 at 10am that means the doctor who reads that result has no idea what the person's readings are for the other 22 hours a day. And they may end up very low even if they are fine when tested two hours after taking their hormones. So they can't really say that any test provides "false readings" because they themselves make use of it to help deny patients treatment.

TSH has a circadian rhythm so the timing of that is also very important.

healthunlocked.com/thyroidu...

And as for TSH level itself, you may find the graph and table in this thread of use :

healthunlocked.com/thyroidu...

[carorueil]

Thank you humanbean, I will download and save this information... Unfortunately I don't feel that my doctor will want to 'discuss' any of these issues any more.🙁 But the information I will keep for future reference 👍

[shaws Administrator in reply to carorueil]

I have found that few GPs are knowledgeable regarding a patient who has a dysfunctional thyroid gland.

When mine phoned to tell me that my TSH was too low, T3 too high and T4 too low.

I stated: "My TSH is low because I take T3 alone. So T3 will be high.

T4 is low because I take none.

GP - But T3 converts to T4!

No doctor that's wrong

[carorueil in reply to shaws]

Thanks Shaws - well mine is an endo 🙁 I should have perhaps just had a phone call rather than travelling for the consultation! I was happy with my FT3 and FT4 results... but it seemed that all she was looking at was the TSH...

[shaws Administrator in reply to carorueil]

I believe that Endos are convinced that when our TSH is very low that we've become HYPERthyroid!

[greygoose]

Have you considered finding a Hertoghe doctor, in Belgium? You could get a Belgian prescription and buy your NDT directly on the spot.

[carorueil in reply to greygoose]

Thanks greygoose have been there and have the video 😀 ! Would prefer to reduce rather than increase my hormone intakes.

[humanbean]

You might find this link of interest, and could also follow up the references at the bottom of the article.

The first two references are by J.E.M. Midgley (aka diogenes on the forum) and his research team :

thyroidpatients.ca/2019/02/...

Would prefer to reduce rather than increase my hormone intakes.

I haven't seen any results of yours, so I don't know why you want to reduce your hormone intake, but you might find this thread of interest :

healthunlocked.com/thyroidu...

[carorueil in reply to humanbean]

Thanks Humanbean

Thank you for the links- I only suggested reducing my meds to the doctor as I figured perhaps there may come a time when I could reduce them... Thanks for the Thyroid CA info - shame I didn't have this to 'show' doctor last week - I'd read something interesting on their website about Omega 3 affecting TSH levels (I take quite a bit of that - gp knows and do lots of annual checks) will need to do a bit more research on that!

Here are my latest results: (29/9/2022) : ERFA 90mg/DHEA 13mg

FT3 3.64 Range 2.3-4.5) 29/9/22 7/6/22 3.14

FT4 1.45 Range 0.93-1.70 7/6/22 1.16

AC Anththryo 71.90 Range <115) 7/6/22 105

AC ATPO 66 Range <34) 7/6/22 87

Cortisol (7-10H) 16.00 Range 6.02-18.4) 7/6/22 18.30

Saliva cortisol test June: (on 90mg ERFA 13mg DHEA since March 2022)

Cortisol AM30 10 nmol/L range 14.0 – 25.0 Ref interval 7.0 – 30.0

Cortisol Noon 3.8 nmol/L range 5.0 – 10.0 2.1 Ref interval -14.0

Cortisol Evening 1.3 nmol/L range 2.0 – 5.0 1.5 – 8.0

Cortisol Night <0.33 nmol/L range 1.0 – 4.0 0.33 – 7.0

DHEA 327 pg/mL range 106 – 300 (taking 13mg DHEA since 4/22)

For background info: cortisol test done February whilst on 75mg ERFA and no DHEA

Cortisol AM30 19 nmol/L range 14.0 – 25.0 7.0 reference interval – 30.0

Cortisol Noon 2.8 nmol/L range 5.0 – 10.0 2.1 – 14.0

Cortisol Evening 1.5 nmol/L range 2.0 – 5.0 1.5 – 8.0

Cortisol Night <0.33 nmol/L range 1.0 – 4.0 0.33 – 7.0

DHEA* 40 pg/mL range 106 – 300

thanks for the information 👍