Endocrinology grr

[Sandie1964]

My daughter was referred to endocrinology after an antibodies test (379) showed raised levels (tsh normal range this time despite being raised at previous 2 blood tests). She has now received a letter saying she doesnt need an appointment and to have yearly blood tests . She has numerous symptoms and GP nurse agreed this was due to thyroid and not her lupus. We awaiting GP reply but is not expecting miracles. Anyone else have a similar problem.

[Sparklingsunshine]

We see this all the time, unfortunately. A GP will refer a patient to an NHS Endo and the Endo sees they have " normal" results and they decline the referral. Unfortunately its a way to keep waiting lists, which can be very lengthy, down. In your daughter's case the fact her TSH was in the normal range this time wont have helped.

Tbh most Endo's are diabetes specialists, many know little about thyroid, so you wont necessarily have gained anything from seeing them anyway. Unless you have an over range TSH on two seperate occasions they are very reluctant to start treatment.

I'm actually rather surprised your GP referred your daughter as hypo is usually dealt within primary care. Endos usually only see the complicated or unusual cases. Hopefully at least your GP surgery are monitoring her thyroid function and keeping an eye on it.

[Sandie1964 in reply to Sparklingsunshine]

Thank you for your reply I'm hoping her GP nurse who wanted her medicated before the referral will keep on to the GP. She is so exhausted and her anxiety is off the roof. As well as numerous othe symptoms. How she is continuing to work I'm surprised.

[Sparklingsunshine in reply to Sandie1964]

The NHS is pretty strict when it comes to initiating treatment, two over range tests 3 months apart, some GP's want TSH at 10 before they'll consider Levo. Others will start treatment with above range TSH and high antibodies. Its very frustrating when you feel unwell and you are waiting for your TSH to get high enough for them to take you seriously.

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

Have you had her vitamin levels tested yet

Essential to maintain GOOD vitamin levels

Low vitamin levels tend to lower TSH - all medics often incorrectly look at

Also coeliac blood test as per NICE Guidelines

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

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...

[Obsdian]

This is my experience too. I was rejected first time with the reason given as "levo is the proper treatment already". A year on my GP has referred me a second time as she has finally agreed with me that more is going on.

We'll see what the endo thinks this time. Else I may have to do private.