16 years since diagnosis and still unwell

[Aquapuss]

This is my first post and hoping for some help/advice. Diagnosed after having third child aged 39 years. I had gestational diabetes in that pregnancy but previous ones were normal. I was 14 stones when I had him but lost around two after starting treatment, only felt well for about two years but put a lot down to stress. Weight all regained plus another stone despite healthy eating, best it got was 12 stone when I was exercising a lot and eating very healthy, no treats. Have dry skin, hair loss, had to get my eyebrows tattoed on as they disappeared! Main symptoms muscle aches, fatigue, low mood ( intermittent as it seems linked to fatigue), difficulty losing weight. Also went through menopause at 45, developed gall stones which were left untreated and developed into acute pancreatitis so needed emergency treatment two years ago and they finally removed my gall bladder! Had oestrogen positive breast cancer four years ago, in remission but am trying to do everything to lose weight, get healthy and think doctors don’t believe me. Have been saying I feel undertreated for years but they say bloods are normal. What can I do?

[Peanut31]

Hi

First thing get a copy of your blood results from your GP, don’t take no for an answer.

Your entitled to them by law.

Once you have them do a new post with the results including the lab ranges.

What thyroid medication are you on?

Best wishes

Peanut31

[Aquapuss in reply to Peanut31]

I am on levothyroxine 125mcg which I take at night. When I took it in morning my symptoms were worse and I REALLY struggled to feel awake until near lunchtime. Been on same dose for years although from recollection my TSH has been much lower in past, around 0.1. I also take 1000 vit D3 after hospital which treated my cancer told me it was low, I did feel some benefit from this so I take all year but never been offered any vit tests by GP. Have to argue to get anything more than T4 and TSH. I asked the nurse last time for extra tests when she was drawing blood which is only reason I have other test results.

TSH 1.4 miu/l

(0.3-4.5)

free T3 4 pmol/l

(3.1-6.8)

free T4 17.9 pmol

(10-22)

TPO. 9.4 kU/L ( also states TPO negative)

I also get tested for diabetes every year at same time hbA1c test which was “borderline” pre-diabetes at 44mmol so now am scared I M going to end up diabetic as well! This has always been normal until this year

Any help appreciated!

[Aquapuss]

Test results are above in reply to Peanut31. They were taken around 9am, can’t remember if I had eaten anything beforehand but don’t think so. Think I had taken my levo the night before. Have put ranges in brackets below each result.

[Aquapuss]

What should my T3 be in relation to T4? Have often wondered if T4 isn’t converting properly to T3 so it isnt reaching my cells. I will have a look at the BC research, am aware also that fat is a risk factor so ypu’d think my do tor would want to help more re thyroid. Apparently I am already seeing the thyroid “expert” in myGP practice so don’t think there’s any mileage in seeing another GP. Told him I was considering going to see a private doctor and asked if he would prescribe T3 if the private one said I need it but he wouldn’t. Can you buy NDT without prescription? Or would it be better to get full testing including vitamins done privately then go back? Thanks for your help!

[SlowDragon Administrator]

First step is to get vitamins tested

Low vitamins are extremely common and getting vitamin levels optimal can help improve conversion of FT4 to FT3

Your FT3 is currently pretty low and conversion is poor

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

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 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).

So as you take Levothyroxine at bedtime, if testing on Monday morning, delay Saturday evening dose until Sunday morning. Take Sunday evening dose AFTER blood test. Take Monday evening dose as per normal

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

You will have to test TG antibodies privately

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

Once vitamin levels are optimal, if FT3 remains low then look at seeing recommended thyroid specialists for prescription of small dose of T3 alongside Levothyroxine

Email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3


 please email Dionne at

[e-mail]

[Aquapuss in reply to SlowDragon]

Thanks for all the useful info! Have ordered a ultravit thyroid test from Medicheck so I can follow the helpful advice on preparing for testing this time. Just wondering about vit D though as I currently take 1000 at bedtime along with my levo dose but your info states this should be 4 hours apart. I don’t take any other supplements but do also take anastrozole ( an aromastase inhibitor to prevent breast cancer coming back)- again I take this at bedtime ( easier to remember if I take all meds at same time!) Could this affect my thyroid blood results? Should I stop taking vit D for a few days before I do medicheck test?

[SlowDragon Administrator in reply to Aquapuss]

Levothyroxine should ALWAYS be taken on its own. It's an extremely fussy medication and difficult to absorb properly

Suggest you get tested on your current (incorrect) way of taking it

Then change to taking Levothyroxine on its own (suggest you move the other medication to morning dosing)

Get a weekly pill dispenser to make sure you don't forget

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 (note recommended to avoid calcium rich foods at least four hours away from Levo)

thyroid.org/patient-thyroid...

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

[Aquapuss in reply to SlowDragon]

Ok thanks! I usually have a cup of decaf tea ( with milk) at bedtime, will this small amount of milk make a difference? Will be useful to know if my vit D supplement has increased levels enough but will switch how I take them after blood draw. Been reading about K2 Mk 7 too, should I be taking this as well, and magnesium?

[SlowDragon Administrator in reply to Aquapuss]

Tea and coffee must be at least an hour away

Some members take Levothyroxine in middle of night, when get up for the loo

Links about magnesium and vitamin K2 Mk7

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

articles.mercola.com/sites/...


betterbones.com/bone-nutrit...

This article explains should discuss with specialists before taking any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Vitamin D research and Hashimoto's

healthunlocked.com/thyroidu...

easy-immune-health.com/magn...

Magnesium supplements must be four hours away from taking Levothyroxine

[Aquapuss in reply to SlowDragon]

Have ordered a full test kit from Medicheck ( including vitamins) but haven’t done it yet. Am confused ( probably brain fog) - if I took my levo last night at bedtime, and I want to do test Friday morning, do I take levo earlier on Thursday or skip it until after I take blood? I am off work today, feel terrible , worn out, nausea, aches, hoarse voice ( but no sign of a cold), dry cracked skin on hands and legs- think its thyroid related and have noticed my symptoms are worse when I have been busy/ stressed - last week involved a lot of travel and disrupted routine. Do other people have same reaction?

[SlowDragon Administrator in reply to Aquapuss]

First NEVER do a blood test at end of week....or it will not arrive at lab until Monday and be useless

Best to do blood tests Monday, Tuesday or Wednesday latest

If testing on Monday morning (for example)

Delay Saturday evening dose Levothyroxine until Sunday morning.

Delay Sunday evening dose of Levothyroxine until after test on Monday. This then gives 24 hours gap between last Levothyroxine dose before blood test

Take Monday evening dose as per normal

[Aquapuss]

Thanks I will do it after this weekend then, hadn’t thought about the test arriving at wrong time for lab.