Endocrinologist won't medicate me?: My results... - Thyroid UK

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Endocrinologist won't medicate me?

Elle137 profile image
11 Replies

My results are:TSH 2.3 (0.3-5.0) down from 5.32

T3 4.2 (3.5-5.8) down from 5.6

T4 11.2 (7.00-20.0) up from 8.6

Could this be from taking a month of supplements (recommended here, so thank you) & I'm now doing ok because of that? I'm still symptomatic (less so) I don't know?? Ultrasound & blood test proved hashimoto's, so advice is to regularly monitor.

I would appreciate any advice 🙂

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Elle137
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11 Replies
greygoose profile image
greygoose

You have Hashi's so levels are bound to fluctuate. I don't think it means anything at all, to be honest.

Elle137 profile image
Elle137 in reply to greygoose

It's so frustrating! Thank you for replying, appreciate it 🙂

greygoose profile image
greygoose in reply to Elle137

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

was this endocrinologist one from the Thyroid U.K. list

Here’s link for Thyroid U.K.list of private Doctors emailed to you, but within the email is also a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Retest again in another 6-8 weeks including vitamin levels

Hashimoto’s

Have you had coeliac blood test yet

If not get tested BEFORE trialing strictly gluten free

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Elle137 profile image
Elle137 in reply to SlowDragon

No I had already started this "process" before I found this site unfortunately, appreciate your reply

SlowDragon profile image
SlowDragonAdministrator in reply to Elle137

Vast majority of endocrinologists are diabetes specialists and often useless for thyroid

Elle137 profile image
Elle137 in reply to SlowDragon

I suspect that may well be the case, I'll keep taking the supplements, get the coeliac test done & monitor the bloods I suppose, I'm virtually dairy free now anyway, hope you have a good evening

radd profile image
radd

Elle137,

It depends what supplements you have been taking and what deficiencies you had previously.

Addressing all deficiencies will have an indirect positive effect on thyroid hormones but some such as iron, selenium, zinc, magnesium and even iodine can directly raise production of deficient thyroid hormones, increase transporters and aid hormone into the target cells where the supplements are also intricately involved in the conversion to T3.

You aren't medicating yet so should be more responsive to optimised levels of essential nutrients. I medicate whole thyroid hormone replacement and previously had many layers to unravel including a huge zinc deficiency to address, but when finally optimised I actually had to reduce my thyroid med dose as the supplementing had proved so effective in aiding the whole thyroid physiology.

Elle137 profile image
Elle137 in reply to radd

Good morning & thank you so much for your reply, I'm starting to understand it all a little better with the help of everyone on this forum, it's been invaluable to me, much more so than my doctor & my endocrinologist whom I've been seeing privately. I don't want medication "for the sake of it" but I've been so unwell (up to supplementing as recommended on here) & I only feel a "little better" but I'll take that! My antibodies are 345 (to which my GP said "slightly over") I pushed for private endocrinologist (I didn't know about this site at that time so went on my research) ultrasound showed very small thyroid, so definite hashimoto's but it would seem the thyroid is producing hormones (albeit tsh should be under 1, currently2.3) endocrinologist said my results are really very good? Continue with supplementing & blood tests every 6 months or earlier if I become more symptomatic as he will not treat at that level, so do we just wait for the next "crash"? Should I take iodine? Can I take it with hashimoto's? I have a full iron panel at the end of the month & a coeliac test. Thank you for taking the time to read this x

radd profile image
radd in reply to Elle137

Elle137,

No, I don’t suggest you supplement iodine because you have Hashimotos but once the rest of the supplements are optimised you could look at other ways of supporting your body’s health further.

Thyroid issues are commonly associated with gut dysbiosis which disrupts the intestinal membrane inviting permeability (leaky gut), resulting in increased antigen exposure, further inflammation, malabsorption of key nutrients and iron, and so impairs good thyroid hormone function further.

Many of us take betaine HCL that replaces missing gastric acid prevalent in Hashi sufferers. Also digestive enzymes and probiotics. However, don’t take anything until after your Celiac test.

There is also as ton of research on Vit D that helps regulate the immune system back to a more normalised function by directly inhibiting the cytokines (inflammatory messengers) associated with Hashimotos. I recommend you reading 'The Root Cause' written by Isabella Wentz which offers great understanding in managing thyroid autoimmune disease.

Elle137 profile image
Elle137 in reply to radd

Good afternoon 😊 thank you very much for your reply, I've ordered the book you recommended, I'll look forward to reading it. The betaine HCI you mentioned, is there a specific brand you use? I will wait until after the tests to start taking it if it's appropriate x

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