Being gas-lit: NOT Hypothyroidism, it’s Silent Reflux says Consultant Thyroid/ENT – Advice requested.

[TorcHouse]

I’m now 73. It’s six years since I first presented to a GP with a swelling on my neck and poor concentration, which within a fortnight progressed to include zombie-like brain fog. Fearing lymphoma I was fast-tracked for an ultrasound scan on my thyroid which showed multiple tiny swellings on my left lobe and one 4cm long on the right. But I “didn’t have hypothyroidism” as my TSH was within range. I subsequently realised I had 31 of the 100+ symptoms on the ThyroidUK list, but was never asked for those. I was deficient in Vitamin-D.

And so life has continued, learning from others (especially here) and the late Dr Barry Durrant-Peatfield’s book, and taking a raft of vitamins & minerals. I buy in a Medichecks Advanced panel twice a year end March+Oct.

However, by mid March 2024 I felt “off”. Medichecks subsequent results:

CRP HS: <0.15 mg/L (0-3)

Ferritin: 95.2 ug/L (30-332)

Folate Serum: 34 nmol/L (no range) Oct23 18.3

Active B12: 74 pmol/L (27.5-188) Oct23 101

Vitamin-D: 120 nmol/L (50-250)

TSH: 2.39 mlU/L (0.27-4.2) Oct23 3.48

FT3: 4.8 pmol/L (3.1-6.8)

FT4: 15.6 pmol/L (12-22)

Thyroglobulin Ab 17.6 klU/L (0-115)

Peroxidase Ab 177 klU/L (0-34) Oct23 151

(results without Oct23 are about the same)

Within a week I was back in Zombie brain fog (leaving gas hob on; believing I’d cleaned a room and seeing I hadn’t was like walking into a glass door; and the rest). When I started with a continual underlying sore throat, then my thyroid swellings inflated and I could feel something when I swallowed, I went to the GP. He freaked, refusing to listen, and referred me on the cancer pathway.

Eight days later (the c-pathway works, then) I was in a waiting room whose aircon was set to chill meat and left for over an hour. Despite wearing a winter coat, by the time I was called my brain was seriously shutting down and I could hardly keep my eyes open or string three words together.

I had a camera inserted through my nose – no cancer but “some inflammation”, which is when I was told it was Silent Reflux, despite never having any sort of reflux in my life. My brain coming back online somewhat in his warm office, I queried regarding hypo people having low stomach acid. He looked like a rabbit in headlights, and I just *knew* he hadn’t a clue. Which was when I was told to take Gaviscon Advance 4 x day, that I did not have hypothyroidism, and that “lots of women after 40 have swollen nodules on their thyroid, it’s normal”. I insisted on an ultrasound which was grudgingly granted.

Home, I sat with past blood results: B12 waved flags. I re-started 1000mcg methylcobalamin and upped my methylated B-complex to its full amount from half. Within a fortnight the sore throat had gone, the thyroid swellings had deflated, and I felt better, not right, but much better.

The ultrasound scan was 05 June, and I had questions ready. The sonographer believed the swelling on the right lobe is now 6+cm and, as I knew, is ready to move behind my clavicle though the scan can’t show how close it is to the oesophagus; the top of the swelling isn’t pressing on the carotid artery.

I suspect I’m not absorbing vitamins & minerals well, especially B12. I learned six years ago that I need Selenium to convert FT4 to FT3 (now at the top of Intermediate conversion, not the bottom), which I believe is why my TSH is stable. I asked the GP if I could be tested for pernicious anaemia antibodies, and was blocked at every turn with the now mundane “your iron has been stable for years” and “you’ve not got hypothyroidism”.

Two days ago a short letter arrived from the Consultant saying “some enlargement of the benign appearing thyroid nodules only” and to take his advised Gaviscon Advance – no sonographer’s detailed report.

I am beyond livid. Despite feeling as bad as I did in April, I wish I’d taken the 90 minute train journey to Leeds and bought an ultrasound scan (£130).

1) am I being gas-lit, or am I gas-lighting myself? Do I have Hashimoto’s hypothyroidism?

2) am I missing something obvious to others?

I have stopped the 1000mcg B12 from today but will remain on the full B-Complex for another few days prior to resting for a Medichecks panel late July. I suspect, despite advice that Active B12 should be 70+, I function better at 100+. Is there a reason for this?

Regarding possible malabsorption, to gain that Vit-D of 120nmol/L I had been on 6000 iu Vit-D3 in olive oil a day (with cofactors) throughout winter. The previous winter I was on 5k with a result of 144nmol/L. And yes, we do eat oily fish.

Any advice/pointers gratefully received, and I apologise for this book-length post.

[pennyannie]

Hello TorcHouse :

A TSH over 2 is a struggling thyroid and with a TSH over 3 you will be dealing with symptoms on hypothyroidism -

and in your results from March 24 you have listed over range and positive TPO antibodies -

the peroxidase AB showing 177 in a range of 0-34 - and also previously o/range in October 23 at 151 - and I don't understand quite what your next comment means -

so yes you do have Hashimoto's an Auto Immune thyroid disease -

and yes had you stayed on the train and had a thyroid scan - this would likely have picked up this information and you might have had an ' official diagnosis ' which would have made more sense to you as it seems this was what you thought all along.

With Hashimoto's you are liable to ' swings in symptoms - from hyper type to hypo type symptoms and erratic own thyroid hormone production as this AI disease systematically, over time, destroys and disables your thyroid, with you becoming hypothyroid and needing thyroid hormone replacement, which initially will be T4 - Levothyroxine.

No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels -

I now aim for ferritin at around 100 - folate 20 - active B12 around 125 ( serum B12 500 ++ ) and vitamin D at around 100.

The NHS are not obliged to accept Private blood tests - but these Medichecks results should force your doctor hand to rerun a thyroid panel including the thyroid antibodies - which should be enough evidence to commence treatment with thyroid hormone replacement.

Taking T4 Levothyroxine should hopefully increase both T3 and T4 thyroid hormone levels - we generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around 60/70% -

currently your T4 is coming in at around 36.6 % with your T3 inverted and at 46% - this will resolve when you have enough T4 circulating to support T3 easily without the strain you are currently under to function.

Many people follow the research and suggestions of Dr Izabella Wentz who writes under thyroidpharmacist.com

[TorcHouse in reply to pennyannie]

Thank you so much for your response, Pennyannie. With such a combined and constant denial from medics I truly was questioning myself. I've seen some of Dr Izabella Wentz's posts. I shall investigate them further. Again, thanks.

[pennyannie in reply to TorcHouse]

I meant to add that when hypo we tend to have low stomach acid - as you also thought - and though I never had the pleasure of seeing Dr P - his book instrumental in me self medicating and buying my own thyroid hormone replacement and being much improved to how the NHS would have me.

I'm with Graves post RAI thyroid ablation 2005 :

[TorcHouse in reply to pennyannie]

I winced at your bio. I feel like a whining hypochondriac against your and others' experiences. Thanks for giving me your time.

[pennyannie in reply to TorcHouse]

No worries - we are all about helping each other and payingback for all the freely given help and advice found on this amazing open, patient to patient forum and all the work put in by Thyroid uk the charity who supports this forum - thyroiduk.org

It shouldn't be like this - but it is and since I joined the members have risen from 15 K to just over 139K in 9 years - so thyroid health issues, mostly suffered by women, is not being resolved in mainstream medical.

[PRJ20]

Hi TorcHouse and Welcome to your first post, though I see you joined this brilliant forum a few months after me - a fellow Septuagenarian 👋🏽 - in 2022 🙂

pennyannie has given you very comprehensive, helpful replies which I can't really add much to at this time, as I'm currently out of the house, on my phone and still have major IT problems affecting all/interchanged across devices (desktop & landline & mobile) and any useful info or links I could give you are at home on a USB stick. 😐

However, in the meantime, I did want to empathise with you - re the gaslighting - and assure you you are far from being alone (my account of being Gaslit...at least some of it...is on my Bio). Indeed, I would say that the majority on here (if not all) share this experience, which is probably why they end up here and the membership, as pennyannie has pointed out, has gone up. Also, why so many follow the guidance on here and end-up self-sourcing and/or avoiding Dr's. It really is a sad and shocking state of affairs. 😥😞

Other than that, at least until I get home and am able to access my FUBAR desktop and USB stick, could I just suggest that you complete your Bio with your thyroid journey, including any blood test results you've had over the years. It's not only helpful to admin and other members to have this info there in one place but, it saves you having to repeat yourself on future posts all the time. 👍🏼🙂

[TorcHouse in reply to PRJ20]

Will try the bio, PRJ20. I get taffled in the tech!