Anyone have any idea what this means? Thank You x - Thyroid UK

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Anyone have any idea what this means? Thank You x

maplewood profile image
17 Replies

20/9/19 TSH 4.0 mu/l (0.35 -4.7) and serium free T4 level 8.0 pmol (7.8-21.0)

25/10/19 TSH 5.94 miu/l (0.27 - 4.2) and free thyroxine 12.4 pmol(12.0 - 22.0)

15/11/2019 TSH 4.1 mul (0.35 - 4.7) and serium free T4 8.1 pmol (7.8 -21.0)

Does the fact that i was taking suppliments B12, vit d, folic and iron from October to November have any relevance to these readings? I am so confused because the last readings were ok so they said no follow up required. I am really struggling to understand why would my T4 be so low? All these readings are whilst i am not taking levothyroxine. I took from 2013 until the beginning of this year then doctor took me off meds. Doi need to take meds or not? Thank You

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SlowDragon profile image
SlowDragonAdministrator

Yes clearly you are hypothyroid....FT4 is below range

Have you ever 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 and thyroid antibodies

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 .

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...

SlowDragon profile image
SlowDragonAdministrator

Have just read through previous posts.....you were left on far too low a dose of Levothyroxine if your TSH was 4

How much Levothyroxine were you actually taking?

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...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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

As rough guideline - 1.6mcg per kilo of your weight is typical dose required

But if you have Hashimoto's then low vitamin levels are extremely likely and need improving by supplementing at same time

Many people also need to be strictly gluten free

maplewood profile image
maplewood in reply to SlowDragon

I have not taken any levothyroxine all of this year. When i did a couple of months ago i had a funny reaction and they took me off. What i don't understand is why my GP thinks my blood work is ok and why the hospital put no further action on the last test i had. They clearly think there is nothing wrong with me.

SlowDragon profile image
SlowDragonAdministrator in reply to maplewood

Current recognition and treatment of hypothyroidism in the Uk is woefully inadequate ....despite there being 2 million people in the UK on Levothyroxine

Hence over 103,000 members on here

Once someone is on Levothyroxine the dose should be increased slowly in 25mcg steps upwards until TSH is under 2

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne at

tukadmin@thyroiduk.org

Your high thyroid antibodies confirms you have Hashimoto's (autoimmune thyroid disease) and that your thyroid is under attack and failing

Low vitamin levels as direct result extremely common. Getting vitamins tested and supplementing to bring to optimal levels can help

Many people have to go over GP's head to get correct Thyroid treatment and in high enough dose of Levothyroxine

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists

thyroiduk.org.uk/tuk/About_...

maplewood profile image
maplewood in reply to SlowDragon

I can not thank you enough. I can not understand how they can diagnose hypo in 2013 and just because they thought they would take me off as a trial now forget they already said i had a thyroid problem. Bless you thank you x

SlowDragon profile image
SlowDragonAdministrator in reply to maplewood

Ask GP to test vitamin D, folate, ferritin and B12

Some or all of these are likely low when hypothyroid

Also request coeliac blood test

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

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Many, many Hashimoto's patients find dealing with food intolerances is very helpful

maplewood profile image
maplewood in reply to SlowDragon

I recently went to see a gastro. I had been gluten free for a couple of months and he took a biopsy. He said it was negative for celiac and when i pointed out i had not consumed it he said it did not matter. I really suffer with gastro issues and I 100 per cent feel better off gluten. I tried gluten again after he said i was not celiac and felt 100 times worse I can not eat bread anymore as get a lot of pain and bloat to the fact i look 6 months pregnant. I can not eat sugary stuff either and alcohol a big no no although i do push the boundries on that one ha. I am so sick of them telling me there is nothing wrong with me when i know i can not feel this shocking and not have something. I honestly think the NHS have let me down big time and have no faith in it anymore. They told me i had lupus and put me on hydroxychloroquine. Then fibromyalgia, maybe MS and then Primary Bilary Chrosis , mixed connective tissue disease and finally (well we know something is wrong with you but we don't know what). No wonder i do not trust them anymore. All those vitamin levels tested recently and all low and they put me on suppliments. Still no light bulb moments from them. Sorry to rant x

SlowDragon profile image
SlowDragonAdministrator in reply to maplewood

Every single cell requires thyroid hormones

All these symptoms are linked to being hypothyroid

You will need to see a thyroid specialist endocrinologist

Gluten intolerance is extremely common with Hashimoto's

Fibromyalgia is often linked to low FT3

Most patients on here have been forced to take control, get private testing, keep good records of what helps . Getting vitamins optimal etc etc

But you will almost certainly need Levothyroxine and at high enough dose to get TsH down to under 1. The most important results are FT3 and FT4.

maplewood profile image
maplewood in reply to SlowDragon

This is where i have a problem. I agree i need treatment but my NHS appointment with an Endo is not until the end of January. This was made because it does not appear i can tolerate the levothyroxine. Based on what you said about the Hashi should i ask my GP to now mark as urgent. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to maplewood

Looking at previous posts, you were originally on 150mcg Levothyroxine for a long time...then GP (incorrectly) started reducing dose

When dose is reduced vitamin levels drop significantly.....and everything spirals down

It's extremely difficult to rebalance. Vitamins likely to need significant improvement

Once vitamin levels drop, TSH goes even lower and frequently GP keeps reducing dose

Most people need somewhere between 100mcg and 200mcg Levothyroxine

Guidelines on dose by weight is 1.6mcg per kilo of your weight. Some people need more

Until you are back on an adequate dose of Levothyroxine and get FT3 and FT4 tested you won't know if you need any T3 added

Many people find different brands of Levothyroxine are not interchangeable. Teva brand upsets many people

maplewood profile image
maplewood in reply to SlowDragon

I tried different brands of the levothyroxine but had no change. Should i hold on until the end of january or should i ask GP to chase appointment? I will look at the list of specialists you recommended and see if there is anyone near where i live also. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to maplewood

Well unless dose was increased back up to adequate dose of around 125mcg or 150mcg symptoms will remain

Conversion of FT4 to FT3 often gets worse as we age, especially after menopause

maplewood profile image
maplewood in reply to SlowDragon

Appointment on 27th January so its if i can hang on till then i suppose. I am in a catch 22 situation as they diagnosed hypothyroid in 2013 and now asking me to wait so they can diagnose it again. In the mean time i am miserable. At least i can self help with vits and no gluten.

MichelleHarris profile image
MichelleHarris

Hi Maplewood, I have similar symptoms to you ( I have just read your posts). I had Shingles in Jan and started on 25mcg in Mar. Soon went Hypo. When I got up to 75mcg started having a reaction hour after taking my meds. I have been on Atavis and Teva like yourself. Just trying Mercury now. Same throat reaction after after taking Tiromel T3. Cant say I feel great either though I am less stiff. I know I have an allergy to Potassium DiChromate and grass ( However that didnt show up in Medichecks test - allergy tests are unreliable). I’m up to 125mcg now.

We must be related! I havent gone 6 yrs and send you all my good wishes x

maplewood profile image
maplewood in reply to MichelleHarris

I am hoping i get to the bottom of it soon. I will keep you posted x

MichelleHarris profile image
MichelleHarris in reply to maplewood

I’m following you lol x

You are hypo, which is why the free T4 is just into range but right at the bottom and TSH is at the top of the range or over. Your doctor should not have taken you off meds, that was stupid - the thyroid rarely gets better and usually gets worse. However, you may find it hard to get meds reinstated. Might be better to change doctor

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