Hashimoto diagnosis

[marianna1978]

Hello people, after years of darkness I finally had a chat with an endocrinologist yesterday, who confirmed my hashimoto suspects, who acknowledged the nodule in my neck, but said it’s all fine and I don’t need to worry, just carry on 25mg levothyroxine because values are good...I also asked her if I needed to fast prior to blood test and she said NO, you also must take your tablets...

[SlowDragon Administrator]

Both of which are incorrect.....if you ask world leading endocrinologists ....and current NHS guidelines on Liothyronine

Testing should be in morning BEFORE taking Levothyroxine

See page 13 ......last box "primary care monitoring "

sps.nhs.uk/wp-content/uploa...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Standard starter dose is 50mcgs Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Add your most recent blood test results and ranges and members can advise on next steps

[SlowDragon Administrator]

See from other posts you are TTC

TSH likely to need to be under 1. Certainly under 2.5

TTC

verywellhealth.com/infertil...

Pregnancy guidelines

thyroiduk.org.uk/tuk/about_...

gp-update.co.uk/files/docs/...

thyroiduk.org.uk/tuk/guidel...

See pages 7&8

btf-thyroid.org/Handlers/Do...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

As you have Hashimoto's are you on strictly gluten free diet?

[SeasideSusie Remembering]

I also asked her if I needed to fast prior to blood test and she said NO, you also must take your tablets...

Well, you can take her advice and get false results, or you can follow the advice given here, as explained by SlowDragon in her reply to your previous thread where she said:

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

The reason we say don't discuss with GP or phlebotomist is because of exactly the response you got. Doctors seem to be unaware that there is a circadian rhythm to hormone levels, that eating affects TSH, and that taking your thyroid meds before your test will falsely elevate your hormone levels. Follow your endo's advice and you will remain undermedicated because you will get false high FT4 result due to taking your Levo before the test, and a false low TSH because you ate before the test (also, drinking coffee affects TSH). Follow the advice we give here and your results will reflect the normal circulating hormone level.

just carry on 25mg levothyroxine because values are good

And what are those levels? Can you post the results with their reference ranges? Doctors think that anywhere within the range is "good" but for us Hypos it's where in range the results fall. The aim of a hypo patient generally, when on Levo, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well. With your dose of Levo being on 25mcg, that is a starter dose for children, the elderly and those with heart problems. The normal starter dose is 50mcg and I expect you need an increase.

As Hashi's has been confirmed it's essential to test Vit D, B12, Folate and Ferritin. Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.

As far as Hashi's is concerned, some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

[SlowDragon Administrator]

Post from 2 months ago

healthunlocked.com/thyroidu...

Presumably you still haven't had thyroid or vitamin levels tested?

You will almost certainly need to get full testing privately

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

[SlowDragon Administrator]

Unbelievable...you have been left on just 25mcg Levothyroxine for over 5 years

Just testing TSH is completely inadequate

healthunlocked.com/thyroidu...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response.

The usual maintenance dose is 100–200 micrograms once daily.

[marianna1978]

I know all of these thanks to your previous advises and I was shocked to the doctor answers... but I honestly didn’t know what to say... I will post my blood works on here and you could tell me better..

[SlowDragon Administrator in reply to marianna1978]

Before seeing any thyroid consultant....we ALWAYS recommend getting FULL Thyroid and vitamin testing privately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Absolutely essential to regularly retest vitamin levels

Also ....guidelines by weight might help push for dose increase

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

[SlowDragon Administrator in reply to marianna1978]

I will post my blood works on here and you could tell me better..

Did you get copies of your blood test results?

[serenfach]

Congratulations on actually getting a diagnosis at last. It will now be in your notes so other medical staff cannot argue. Now to find an Endo and GP who know something about it!

My Endo came out of his lair and shouted my name to a full waiting room. He then shouted "you have Hashimotos" and turned to go back to his lair. I burst into song "I am turning Japanese, I think I am turning Japanese, I really think so!" as I did not know what Hashi's was then, and it seemed appropriate at the time.....

He ran and slammed the door closed. There was no prescription.

[marianna1978 in reply to serenfach]

Well although I gave the Endo proves I had hashimoto for at least 3 years, my regular prescription has been unchanged, and I didn’t receive any sort of advise... so I got the confirmation on my hashimoto but nothing changed 😏