Some advice in choosing the best blood tests to go for, please, as am becoming a bit bogged-down with choices!

[PRJ20]

1) Starting results and start of treatment from my Bio March ’91-March ’93 – Under Care of [Dr] A, GP At HC1 From Mid ’84-End of March ‘94: a really good, all-round GP who was fully conversant with both my medical and personal history and treated patients in a truly collaborative, advocating on behalf of them sort of way; as unique, whole human beings; and who was quite happy/comfortable treating and monitoring me in the surgery (probably way more competent than any that have followed him, too).👇

11/03/91

T4 76 (70-155) Free T4 13.1 (11.0-22.0)

22/01/93

TSH 0.04<* (0.17-3.20) T4 134 (70-155)

16/11/93*

TSH * (70-155)

Autoantibodies:

Thyroglobulin Negative (<1:40)

Thyroid Peroxidase (MIC) 1:1,600* (<1:400)

Nuclei (ANA) Negative

Mitochondria (AM) Negative

Smooth Muscle (SMA) Negative

Comments: TOXIC!

Medication: I was started off on [I think] 25/30mg Carbimazole daily and it was agreed this would be gradually reduced (Titration method) to hopefully 5-15mg a day.

28/01/94

TSH * (Ranges as before)

Comments: Still Hyperthyroid Levels

Rx: Carbimazole reduced to 25/20mg a day

16/03/94

TSH *

Comments: Still Toxic Levels

Rx: Carbimazole reduced to 15/20mg a day

Rest of results, limited as they are to TSH & T4, are now available in a more cohesive form on my Bio.

2) What  PurpleNails said 3 months ago 👇

Replying here, on your older thread about your comments on alert cards (so that post stays on track)

50mg carbimazole is a high dose even as a initial starter & it would be exceptional to maintain it beyond first 2 months.

Carbimazole works on how the body uses iodine to produce new hormone. So the affect is temporary. It’s doesn’t have a remaining affect on the thyroid.

Was your Graves confirmed? Did you have other treatment? Transient hyper is very common in early stages of autoimmune thyroiditis in which case your thyroid function would naturally dropped, the carbimazole might not be responsible for lingering thyroid problems although being inappropriately dosed on carbimazole would have reduced levels to severe hypo & you must have felt terrible.

TED can also occur without hyper Graves.

which was in response to my comment 👇 on  helvella s post on Carbimazole/PTU Alert Card 👌

I agree 200% (including 100% for your further suggestion!) with you helvella . It is a lethal drug, which I'm still suffering from being over prescribed (for Graves'...a 50mgm 'maintenance' dose for goodness knows how long 😟) nearly 30 years ago, with the doctors responsible for the over prescribing long since having moved on or retired but, only after leaving a trail of spurious and erroneous statements on my files (I'm still battling to have those 'corrected').

The health implications on me after all that have been massive, not least because I believe they completely f&%$£ed my thyroid/whole system functioning up. 😠

So, thank you for this helvella - you've just given me another tool for my fightback and have brought me to 😢

healthunlocked.com/thyroidu...

Please skip to Plan/6 below for the most relevant and read the rest at leisure only if you want to!

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3) When I first registered with my current GP practice (June 1997), I'd not long just refused to have the RAI Ablation or TT after the RAI test dose and scan in Nuclear Medicine (something the last Endo I saw in May '97 had insisted on) showed "normal looking thyroid tissue" - "Why shoot the messenger?" to paraphrase a member on here 👍- and because, by that time I knew just enough to know they were going on very limited TFTs and not looking deeper. I also had an outstanding referral [back] to the OP Homeopathy from my previous practice, as I wanted someone to take a more holistic approach. Thus, this GP (retired last year, thank goodness, as he turned out quite a mixed bag of contradictions and contraindications!! lol):

a) started me off on a lowish dose of PTU; b) did a re-referral to Homeopathy (though he didn't believe in it! 🙄); and c) when I presented in the GP surgery 3 months after starting on Nat Mur (Homeopathy treatment of 'choice' for the thyroid) with 'normal' thyroid results, even though I'd weaned myself of the PTU with the guidance of the Homeopathic Consultant (also an experienced Medical Dr) soon after starting on Nat Mur, he proclaimed not to believe that it was Homeopathy that had 'cured' me but, verified exactly what  PurpleNails has said (he'd worked in Nuclear medicine, so knew!) and even used the expression that "the thyroid burns itself out and turns to/becomes Hashimoto's Thyroiditis"

4) Since then, as I've seen is sadly common and the norm on here amongst all of the amazing members, I've had zero treatment for Hashi's. The usual very occasional 'monitoring' for a 'thyroid disorder' via the same limited blood tests (a lot of which I've had to remind them to put on the form!). Zero acknowledgement I have an Autoimmune Disease, along with its implications.

I've also had two significant trauma's since 3c):

i) Jan. '99 when I was caught-up in an attempted armed robbery on my local post office when I was the only customer in there and actually had a gun waved towards my head after the staff ducked down behind the counter; and

ii) May 2007, when I lost my precious only child, my 23 year old daughter, in a RTC (Road Traffic Collision).😭💔

But, I hasten to add, I finally managed to secure EMDR in 2018 (for anyone interested: psychotherapy.net/interview... ) and this has been successful, though my stress levels still need very careful managing and pacing.

5) After every significant trauma, particularly since the AID/Graves/Hashi's kicked-in, my body system seems to follow a similar/the same pattern:

* on going into the shock and numbness stage, I loose weight dramatically - i.e. After Z was killed, in the 2 and 1/2 weeks between her death and farewell funeral, I dropped 3 sizes in clothes (no idea what that equates to in weight, as it's years since I threw out my scales 🙃); then I'll plateau for a while before starting to pile the weight back on+more; and it doesn't matter what I eat or how much or little exercise I take, it follows the same pattern.

* with suffering so much trauma (both from childhood and early adulthood, which was all repressed until my 30's after I'd had Z, then being re-traumatised by the wrong/talking therapies) and then having an untreated Hashi's, which started out as Graves' with TED, it's been difficult to get an angle on everything. However, I now think I'm getting there (finally managed to get some help lined-up to deal with my current GP surgery through my local LGBT Foundation after contacting them last week) and from here is where I am now and what help and guidance I need from this lovely, supportive forum.

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Plan

6) I am aiming:

a) to claw-back as much QOL and symptom relief as possible in whatever time I have left (Dx with Stage 3 COPD last August; severe Vit D deficiency has already shown up x 2+I'm pretty sure my GP hasn't been treating it appropriately going by reading accounts on this forum; Dexa scans already showed Osteopaenia due to the latter and have now stopped being repeated by the GP; Fibromyalgia and CFS Dx in 2012; crumbling spine in 2014...the list goes on) as, between trauma, this disease and terminal grief, the ravages have taken too much from me to be 'reversed'...Damage done, as they say...and I've come to terms with that;

b) to book a Private appointment with an Endo once I come back from being away next month (going down South to Somerset, close to where some of my family live, starting with a w/e retreat with other bereaved parents through TCF where I've arranged to stay for the rest of the week before going to the Lakes to spend some time with my 2 sisters at our home there 👍💕); and

c) meantime/before I go away, to get as much info as I can re my AID and nutrient/vitamin, etc.. status, as well as my adrenal and/or cortisol functioning, as I'm fairly certain these have come into play (maybe even one of the helpful genetic tests that might give some clues) through private blood tests.

Thanks to browsing through lots of posts over the months since I first joined, I've looked at👇

thyroiduk.org/help-and-supp... - The very helpful TUK Private Testing in the UK page and have considered👇

bluehorizonbloodtests.co.uk... - and going for the Platinum one, with the blood draw at a Superdrug store.

I've looked at other options, too, which is where I got bogged-down, as well as a tad confused with how/where the discounts apply? So, question is: am I starting off a bit too large, iyswim, or would it be better to test everything gradually?

Your helpful suggestions and guidance will be very much appreciated, with apologies for the length of this.

PRJ20 x

[Zephyrbear]

I’m so sorry to read what you’ve been through(not only this post but your bio too) and I’m not really experienced enough in the hyperthyroid condition to be able to offer much advice, but I am sending you a (((big hug))) and hope it helps a little.

The best thing I can think of is that you get your blood tests done, post the results here and, hopefully, somebody will be able to advise you further on what to do next.

I wish you all the best. 🤗

[PRJ20 in reply to Zephyrbear]

Thank you so much Zephyrbear for taking the time to reply (and for reading my still somewhat muddled and probably over-long bio) - I really appreciate it.

I had thought about doing what you suggest but, then wasn't sure because of the expense of the Blue Horizon one (got a lot of other things to consider, including a new desktop...well, at least having this one totally rebuilt...which is another priority as it's my way of keeping in touch, particularly with family & bereaved parent friends). Anyway, I'll have a good think about it when I hopefully get out later to have a sit and potter in nature (my favourite place to be) and work out (or juggle!) some figures. Thanks again for your reply and the hug. 🤗 x

[pennyannie]

Hello PRJ20 and welcome to the forum :

Since we need a strong core strength and optimal levels of ferritin, folate, B12 and vitamin D in order to convert T4 - Levothyroxine to T3 the active hormone that runs the body I think the fullest of all thyroid blood tests - around 10 blood analysis - and marketed as the Ultra/Extra thyroid bundle blood test the most comprehensive base to work out from.

It is a venous blood draw and between them I believe Medichecks and Blue Horizon cover the country offering a nurse home visit, at a surcharge, if it suits you better to have a nurse come to you and draw the blood.

Refrain from any supplements for around a week before the appointment so we measure what your body is holding onto and this also applies on the day, as if you are taking any thyroid hormone replacement.

An early as possible morning appointment is recommended and if taking thyroid hormone replacement take your daily dose after the blood draw - T4 Levothyroxine is a prohormone, a storage hormone - it will not matter.

Once with the report start a new post with the results and ranges and you will receive considered opinion.

[tattybogle]

Hi PRJ20 the blue horizon platimun one includes Reverse T3 which is a) not very useful, b) very expensive and c) means the results take a very long time to come back (they have to send it to america to get the Reverse T3 tested).

So you may be spending more than you need to and waiting a long time for results with that one.

I get a bit lost in tests too, but i know you definitely want one that does TSH / fT4 / fT3 / B12 / Vit D /Ferritin/ Folate /TPOab / TGab

if you want iron/ cortisol / HbA1c etc then i don't know which test is the best for those .

 SlowDragon /  SeasideSusie please can you help PRJ20 decide on best tests and explain how to use any discounts.

(they are considering getting blue horizon platinum ~ prior history of hyperthyroidism/ carbimazole many yrs ago , not currently taking any thyroid medication)

it's not clear what current symptoms are ...  PRJ20 can you list them here please?, it would help people advise which tests may be most useful.

p.s . you had some bloods done at the GP the other day ... what did they test ?

[SlowDragon Administrator]

You don’t need the platinum test

Reverse T3 is extremely expensive, and largely irrelevant

Recommended that all thyroid blood tests early morning, ideally just before 9am and 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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Blue Horizon includes cortisol, might be useful

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Or

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

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

[Sneedle]

Hello PRJ20,

Your post touched me deeply and I'm so sorry for all the terrible things you've had to endure.

🤗🌸

Your bio and info is spectacular in the clarity of information!

My only add-in to what you requested re tests is that the Blue Horizon Gold (which I took earlier this year) does not give a complete Cortisol picture - I think it's only a snapshot at the time of the test. Otherwise I thought it a helpful test. One caveat to that - it only tests the Total B12 rather than the active B12. This may not be important, but from my own experience, for someone new to testing like this, is to go for Medichecks Advanced Thyroid (£89) as suggested by Slow Dragon which does test Active B12 (the B12 your body can actually use). Helps you rule out B12 more clearly.

If you want more complete information on adrenals, then I think Regenerus gets recommended here, along with another one I can't remember sorry!

I did the Medichecks Cortisol and have found out that folks here don't find its method of reporting very helpful, as 1) it doesn't include DHEA which apparently helps you know which direction you're headed adrenal-wise and 2) of the four results, only two give ranges, the other two are <> greater than less than results which are too vague to tell you where you are.

I'm writing this from memory so if anyone spots an errors, please flag it up!

Welcome to the group and I'm sure you will benefit, as I have, from the astonishing amount and quality of knowledge amassed here.

Best wishes 🏵️

[PRJ20]

Thank you all for your helpful and supportive responses, with apologies for the delay in my replying (continuing IT nightmare has delayed that).After considering all your responses, particularly this from SlowDragon

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

as well as what pennyannie , tattybogle & Sneedle had said about the minimum of testing needed to get the fullest starting picture and this Blue Horizon also being mentioned again by pennyannie & sneedle, though not that good for the Cortisol, I ended-up ordering this one - Blue Horizon Thyroid Premium Gold.👍🏽

Unfortunately, I didn't think the ordering through properly with my IT problems 🙄 I ended-up ordering over the week-end from my phone when out; hadn't accounted for having to validate any links via email to complete the purchase (due to the continuing IT problems, my phone can't be connected to my home WiFi - only my phone carriers network or a public WiFi when out - and my email, thus, doesn't update properly until I'm connected to a WiFi!); and when the ordering process indicated they'd be emailing me a link to complete the ordering process, I had to drive to a Retail Park a couple of miles away where I thankfully managed to get a great WiFi signal at a Costa Coffee place there before the link expired. Again, probably due to the IT problems, although I'd put in the TUK30 code for the 30% discount, that got missed-off somewhere in the ordering process. 🤦🏽‍♀️🤷🏽‍♀️

Fortunately, Blue Horizon were very easy to deal with - responding to my resulting email ? over the discount code first thing Monday morning and have now applied the code.

I've now received my Blue Horizon Thyroid Premium Gold testing pack (it was there this morning, though it may have arrived yesterday & been signed for by one of my neighbours as I had an off-day, didn't go out & spent a fair bit of time in bed where I can't hear the door buzzer due to hearing loss) so, will be ready to test on Monday morning and will post the results once I have them.

Thanks again for your support.

PRJ20