Under Active Thyroid....ongoing symptoms - Thyroid UK

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Under Active Thyroid....ongoing symptoms

CMBB27 profile image
10 Replies

Hi, I’ve posted a few months previous and got some excellent support so hoping for some more help please.

My Symptoms are ongoing and driving me insane, I’ve got an Appointment with endocrinologist in two weeks and want to be able to go in informed so I’ve just asked for a copy of my results. These repeat tests were taken at 9.17am before medication.

Can anyone help me understand this?

My Gp took a wide range of other bloods and my Serum LH Level was also high (19 U/L) and Eosinophil (0.48) not sure if this has any relevance.

Thanks in advance

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diogenes profile image
diogenesRemembering

When you are healthy the ratio FT4/FT3 is about 3/1 to 4/1. The top acceptable FT4/FT3 ratio for someone on T4 only is about 4.5/1. Your ratio is nearly 7/1. It is obvious you have a conversion problem. Your FT4 is raised above the range even though your FT3 is only modestly above its range's bottom limit. This means that you probably need T3 medication as well as T4. This should lower your FT4 because you will take less T4, and raise your FT3 with the T3 you would take. This in turn will suppress your TSH to more acceptable lower values. I would guess that if reverse T3 was measured it would be elevated because your body will try to remove the excess T4 it can't handle in conversion to T3 by draining it by the rT3 pathway.

CMBB27 profile image
CMBB27 in reply todiogenes

Thank you so much. I read something on this and wondered if there was a medication that could be taken. I’m not very knowledgeable on it all. Much appreciated

shaws profile image
shawsAdministrator in reply toCMBB27

I am not medically qualified but I would think you need a T4/T3 combination. Diogenes will respond when he reads your follow-up question.

SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine are you currently taking?

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Is this how you do your tests?

Ask GP to test vitamins and antibodies if not been tested

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...

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

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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

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

NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

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.

Previous post showed low ferritin. Have you been working on improving this?

Did GP do full iron panel to test for Anaemia?

If TPO or TG antibodies are high (Hashimoto's) ask for Coeliac blood test

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

CMBB27 profile image
CMBB27 in reply toSlowDragon

Hi thank you, I will look into all of this.

Excuse me if I get any of this wrong....

Tested positive for thyroid antibodies about 2 year ago when pregnant with my son and seen endocrinologist. My Dosage was increased to 150 in pregnancy and I was fine, reduced to 125 and was ok and then since they’ve reduced to 100 that’s when all symptoms have returned. I’m now permitted to take an extra 25mg every other day but this had shown no improvement.

My vitamin D levels were tested and were also low and told to take over the counter medication. Admittedly I have not been doing this regular although i should be as I breastfeed a toddler too.

I am unsure what to do to improve Ferritin levels, can you help with this?

I have been considering trialling a gluten free diet and also I was dairy and egg free for my sons allergies and I think I may have felt better when doing so.

I have had all symptoms back since around October last year, it’s affecting my whole life and although still attending my slimming class I have gained almost two stone in this same period. I feel like I have no control and this then affects my mood too.

I can’t thank you enough for you advise I will read the links and try to learn more about it to help myself.

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply toCMBB27

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

Thyroid hormones can not work if vitamins are low

Vitamins frequently too low because we are not allowed high enough dose of Levothyroxine

Absolutely essential to test FT3 and FT4

What are most recent blood test results on 112mcg Levothyroxine?

Always get tested early morning and fasting and last dose Levothyroxine 24 hours prior to blood test

CMBB27 profile image
CMBB27 in reply toSlowDragon

I’ve just had them done again this morning but stupidly I didn’t fast and took my meds because GP Said it was irrelevant (I now note your earlier advice). Would you mind if I post them in a couple of days for your advice please? The endocrinologist hasn’t asked for me to get bloods taken but I thought it would be wise to go with a recent update. Should I be taking vitamin supplements for all 4 or just the one that is low?

Sorry for all the questions

SlowDragon profile image
SlowDragonAdministrator in reply toCMBB27

You need to test before supplementing

GP should test folate, ferritin and B12

How low was vitamin D? How long ago was it tested?

If vitamin D was under 50nmol GP should prescribe

Local CCG guidelines on how much as minimum patients might need

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

How much have you been supplementing?

Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs.

Frequently with Hashimoto's we need higher dose than average

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D is toxic if take too much. (No more than 200nmol maximum)

SlowDragon profile image
SlowDragonAdministrator in reply toCMBB27

TSH daily variation

healthunlocked.com/thyroidu...

Daily variation

healthunlocked.com/thyroidu...

TSH secretion is pulsatile and has a circadian rhythm: serum TSH levels are 50% higher at night and early in the morning than during the rest of the day. Thus, repeated measurements in the same patient can vary by as much as half of the reference range.

Median TSH graph

healthunlocked.com/thyroidu...

shaws profile image
shawsAdministrator in reply toCMBB27

Ignore doctors as they know less than us - and they are supposed to be knowledgeable.

By adjusting our hormones according to the TSH leads us onto more clinical symptoms, when the aim is to relieve all of them.

thyroiduk.org.uk/tuk/thyroi...

Read what the following Hormone experts states about TSH.

hormonerestoration.com/

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