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
Feeling deflated after latest results - warning rant about to take place :-)
Possible immunotherapy treatment for Graves disease
What is your dosage after RAI?
PTU causing liver problems.
