Tsh 14

[Rose_georgina]

I requested a blood test as I was not feeling well thinking I was being over prescribed levothyroxine currently on 75mg, but when I got to the doctors they said they needed to give me 100mg, I have been stable for a year now, why the sudden change? Been referred back to endocrinologly as I have a couple or u2 cysts on thyroid to. Is this what usually happens. I'm so fed up with this now.

[SlowDragon Administrator]

As you posted several months back about heavy periods, this is classic sign of being under medicated.

75mcg was only one step up from starter dose. Were bloods tested 8 weeks after increase to 75mcg?

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 is in top third of range and FT3 at least half way through 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)

You will need FULL thyroid testing 6-8 weeks after each dose increase

Essential to test Ft4 and Ft3

You could ask for vitamin testing NOW

heavy periods lead to low ferritin/iron

Have you had thyroid antibodies tested?

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

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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)

Is this how you do your tests?

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

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

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

[Rose_georgina in reply to SlowDragon]

Yes I had the autoimmune and I did have autoimmune, the doctor at endocrinologly was very dismissive and said she didn't know why had been referred as they usually refer people with over not under, I've been re referred and I'm hoping I'm.not going g to get the same response as that's a waste of my time just to be told that, I was stable in August and wasnt actually due a blood test, glad a requested one now. Thanks for all the information

[SlowDragon Administrator in reply to Rose_georgina]

Well you should have had blood test 6-8 weeks after increase to 75mcg Levothyroxine

Did you?

Consultant most likely a Diabetes specialist. They rarely understand Hashimoto's.

With Hashimoto's have to get FULL Thyroid and vitamin testing ...very often privately

Hence almost 105,000 members on here. NHS understanding and management of Hashimoto's is woeful

[SlowDragon Administrator in reply to Rose_georgina]

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

Low vitamin levels affect Thyroid hormone

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.

According to Izabella Wentz the Thyroid Pharmacist 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

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

[Rose_georgina in reply to SlowDragon]

So I can request a gluten blood test then? I feel like I hardly know nothing about what I have, I do know I am feel fed up, I just want this to go, I should of realised as I've been constantly bleeding and thought it was because of the implant i have but I'm on the pill now and still bleeding, having really bad headaches which I've been given amitriptyline for.

[SlowDragon Administrator in reply to Rose_georgina]

Yes ask for coeliac blood test

If result is positive for coeliac you have to have endoscopy before going on gluten free diet

If result is negative you can immediately go strictly gluten free

Headaches are hypothyroid symptom

Heavy periods are too

Essential to test ferritin and iron plus vitamin D, folate and B12

Request they are all done next week

You have been left on small dose of levothyroxine far too long

Did you get bloods tested 6-8 weeks after increase to 75mcg?

Most likely needed increase levothyroxine to 100mcg 6-8 weeks after that increase to 75mcg

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.

[Rose_georgina in reply to SlowDragon]

Yes I was told I was within range in August, and that they would do another blood test in 6 months, but what I wasnt told that I had 2 cysts on thyroid I knew I had one, but when I rang for my results from my second thyroid scan was told no change and no action needed, but when I asked yesterday to see the report, then I found out about having the two and the first scan was a u1 but know its 2 cysts at u2 which I was told they are benign but nevertheless I should of been told.

[SlowDragon Administrator in reply to Rose_georgina]

They were wrong. Bloods should be done every 6-8 weeks until stable on high enough dose

That means repeating blood tests every 6-8 weeks until blood levels are stable

Current thyroid treatment is woefully inadequate

[Rose_georgina in reply to SlowDragon]

Thank you for all the information its greatly appreciated

[StitchFairy]

The simple explanation might be that when you were first diagnosed your thyroid was still able to produce a small amount of thyroid hormone. But since then it's deteriorated further and so you need to take more thyroxine than before.

[Rose_georgina in reply to StitchFairy]

Thank you.😊