Advice as 1st timer... : Hi i have had... - Thyroid UK

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Advice as 1st timer...

Nilly-batu16 profile image
30 Replies

Hi i have had underactive thyroid for 33yrs, i was told @ the time it was myxodaema- put on all levels of thyroxine 200 @ 1st, then 100 then for past 10 or so years 75mcg: now i know due to internet to have the tests thyroid plus: i suffer muscle aches, bone joint aches, dry throat, thinning hair, dry skin the usual: can you help with the results: do i need T3 jointly my results were: TSH 4.68 -free T3 4.42 free thyroxine 16.4 - need advice TSH is outside normal range

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Nilly-batu16 profile image
Nilly-batu16
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SeasideSusie profile image
SeasideSusieRemembering

Nilly-batu16

Can you please add the reference ranges for your results, they vary from lab to lab so we need your lab's ranges to interpret your results, eg TSH: 2.5 (0.2-4.2).

You will only know if you need T3 if your TSH is down to around 1 then see where your FT4 and FT3 lie as that will show how well you convert T4 to T3. Conversion requires optimal levels of vitamins so you also need to test

Vit D

B12

Folate

Ferritin

Have you had thyroid antibodies tested - Thyroid Peroxidase and Thyroglobulin?

Nilly-batu16 profile image
Nilly-batu16 in reply toSeasideSusie

TSH range 0.27–4.2 my result 4.68

T3 range 3.1-6.8 my result 4.42

Free thyroxine 12-22 my result 16.4

SeasideSusie profile image
SeasideSusieRemembering in reply toNilly-batu16

Nilly-batu16

You are currently undermedicated on 75mcg Levo to have an over range TSH. Your FT4 is 44% through range and yor FT3 is 35% through range. The first thing you need is an increase in Levo, 25mcg immediately and retest in 6-8 weeks' time.

When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

You can't know if you need T3 until your TSH is down to around 1 and then see where your FT4 and FT3 lie, that will tell you how well you convert and if T3 will be beneficial.

Have you had thyroid antibodies tested?

You still need Vit D, B12, Folate and Ferritin tested, optimal nutrient levels are needed for thyroid hormone to work properly. Your symptoms suggest:

muscle aches, bone joint aches, - possibly low Vit D

thinning hair - possibly low ferritin; undermedication

dry skin - possibly undermedication

Nilly-batu16 profile image
Nilly-batu16 in reply toSeasideSusie

Thank you so much, i stopped vitD, biotin 3 weeks b4 test: can i get thes tests done on nhs

SeasideSusie profile image
SeasideSusieRemembering in reply toNilly-batu16

Your GP may be willing to do the tests, some will. Some say they won't do Vit D because "everyone in the UK is deficient" which really suggests we should be tested and address the low levels. If GP wont do them then most of us do them with one of ThyroidUK's recommended labs.

SlowDragon profile image
SlowDragonAdministrator in reply toNilly-batu16

Are you in the UK?

Your results show you are clearly under medicated

See GP for 25mcg dose increase in Levothyroxine and bloods should be retested 6-8 weeks after each dose increase

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).

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 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)

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

Nilly-batu16 profile image
Nilly-batu16 in reply toSlowDragon

Thankyou for your imformative info slow dragon.. i will have the ultra vit one i think, if i cant get off GP

SlowDragon profile image
SlowDragonAdministrator in reply toNilly-batu16

Suggest you get dose of Levothyroxine increased by 25mcg and pay for FULL Thyroid and vitamin testing 6-8 weeks later

No point paying for private testing yet, as you know you are under medicated

You can order testing a few weeks/months ahead of when you need it (when on good offer price )

Nilly-batu16 profile image
Nilly-batu16 in reply toSlowDragon

Yes have increased this morning by 25mg, next app to make @ docs, then order full test 8 wks. Thankyou slow dragon

Nilly-batu16 profile image
Nilly-batu16 in reply toSeasideSusie

Sorry just got back to you! Antibodies result = Thyroglobulin 11.6 k u/L <115

Thyroid peroxidase antibodies= <9 <34 kIu/L

MaisieGray profile image
MaisieGray

Myxoedema is the 'old' term for hypothyroidism, so it's the same thing. It was used when I was diagnosed 40 yrs ago. It is still used now but generally in reference to myxoedema coma and myxoedema crisis.

Nilly-batu16 profile image
Nilly-batu16 in reply toMaisieGray

Thankyou

waveylines profile image
waveylines in reply toNilly-batu16

I was diagnosed with Myxoedema 10yrs ago.....maybe something to do with registering you for free prescriptions?

Nilly-batu16 profile image
Nilly-batu16 in reply towaveylines

No had that for yrs, but thanks anyway

shaws profile image
shawsAdministrator

My goodness!! After being diagnosed 33 years ago and you still have a TSH of nearly 5 is a disgrace. The aim is a TSH of 1 or lower. So many of the 'professionals' seem to think that once prescribed a TSH of anywhere in the range is 'fine' - not so and they should do some more reading to become knowledgeable about treating sick patients who have hypothyroidism. A Full Thyroid Function Test would be ideal occasionally but they don't test the Frees, FT4 and FT3 which are more informative than any others. Both should be nearer the upper part of the ranges.

μικρόop reading internet advises, .you don't need hight level ft3 ft4 If T3 and T4 levels are high, you may have a rapid heart rate and diarrhea/weight loss. Listed below are other symptoms of too much T3 and T4 in your body (hyperthyroidism): Anxiety.

Nilly-batu16 profile image
Nilly-batu16 in reply to

Thankyou for your conments

waveylines profile image
waveylines in reply to

Swaff Ft4 is a blood test to measure how high your T4 is in your blood stream. Ft3 is a blood test to measure how high your T3 is in you blood stream.

Palpitations can occur with overly high AND low levels of thyroid hormones. Some people actually loose weight when hypothyroid (sadly not me!!). Thats why its useful to compare all signs and symptoms experienced alongside the blood tests with how one is feeling.

I used to keep a log alongside blood tests that way you can see your own trends.

Sharcott profile image
Sharcott

Your 3 T 3 is low 75 T4 is not enough and TSH way to high, something else going on TSH is not reading free T 4 correctly from what I see

765nottyash profile image
765nottyash

My advice is do your research, and find your root cause. I've had an underactive thyroid for ten years. Giving up gluten and dairy definitely help me and also taking Nature Thyroid, I never felt well on the synthetic stuff. I'm currently doing intermittent fasting which is working wonders for my weight and over all welbeing. Good luck and never give up. Denise

AnnieOK profile image
AnnieOK in reply to765nottyash

Hi 765nottyash

Just as a matter of interest, what 'protocol' are you using for the fasting - was reading up on this yesterday. I've tried the 5:2, and not eating for 16 hours in a day (I think) in the past, not feeling entirely great at the mo due to vitamin deficiencies but working on that... so once sorted might try the fasting again... but not confident I could do the 5:2 again...!

Thank you!

765nottyash profile image
765nottyash in reply toAnnieOK

Hi Annie,

I drink hot lemon water to start the day and don't eat until I feel hungry currently breaking my fast about 1 to 2pm, then I start small with a bullet proof coffee or a mug of bone broth, I tend to eat two meals a day with no snacks. I find I'm not hungry at all, but I think that builds up over time.

Regards Denise

AnnieOK profile image
AnnieOK in reply to765nottyash

Ah great, thank you... I like the idea of the lemon juice first thing - I've been having cider vinegar - similar thinking I guess...?!

I think i'd have to swerve the coffee post mid day as a coffee after 12 keeps me wired until bedtime and I can't sleep!!!!!

Good luck with everything

Odette

765nottyash profile image
765nottyash in reply toAnnieOK

Hi Odette, I never have my bullet proof coffee later than 2pm, sometimes I'll have it earlier if I'm feeling hungry as it curbs my appetite, but I only ever have one per day. I have ACV before meals, especially if I'm having protein, as if helps with digestion and I believe it helps you to consume less calories.

765nottyash profile image
765nottyash in reply to765nottyash

Oh and good luck to you too, I feel so much better on intermittent fasting, that I see it as a life style now and not a diet.

Kind regards Denise

Billyboy2u profile image
Billyboy2u

Hi and thanks to share your experience but I have a over active thyroid ?

765nottyash profile image
765nottyash in reply toBillyboy2u

Hi Billyboy2u

I've had an underactive thyroid for over ten years, giving up wheat and dairy were my first breakthroughs and now intermittent fasting, which had really worked for me, I've lost weight and feel great.

Kind regards Denise

765nottyash profile image
765nottyash in reply toBillyboy2u

Hi again Billyboy2u,

Sorry to be just getting back to you regarding your overactive thyroid. I had an overactive thyroid as a teenager into my late 40's and then something flicked a switch in my body and I went into being underactive, personal I preferred being overactive.

My main problems when I was overactive were always feeling hungry and charged, like I couldn't sit still and was on edge all the time, I had palpitations and couldn't put on weight. Also while I was hyper I had my dad die young at 45, I had 3 miscarriages, an abusive marriage, divorce and never felt anyone understood me, so I do feel your pain.

The main thing is never giving up!!

The doctor's for me have been almost a waste of time, they just give you pills instead of getting to the root cause.

I think now I might have Hashimoto's hence the swap over from overactive to underactive, although I do feel some of the symptoms apply for both.

For years it felt like I was living a lie, happy on the outside, while on the inside I felt like I was alone in a dark cave.

But nothing lasts forever, the worst part was trying to convince doctors to help, so instead of relying on them I've done my research, tons of it and today I really do feel a whole lot better. The main thing I think is how you feel, so look to your life style and diet, wheat and dairy are not good for most of us.

Our struggles make us who we are. Take comfort in the knowledge that you are not going crazy and be kind to yourself and live well.

Kind regards

Denise

Nilly-batu16 profile image
Nilly-batu16

Thankyou, i’ve had so many comments on this, i trusted in GP’s alone, thank goodness i had foun the site, & sent away for b checks

Nilly-batu16 profile image
Nilly-batu16

Any advice as last blood test said to increase too 100 from 75 mg... From last time, may 19, i have increased levothyroxine too 100mg, now had thyroid ultra vit blood test =CRP HS 4.31 <5.

TSH 0.035 ——- 0.27-4.2 range

FREE T3. 5.51—-3.1-6.8 range

FREE Thyroxine. 23.4 12-22 range

Thyroglobulin 10

Thyroid peroxidase antibodies 9....vit D low,border.. any advice, as fed up, getting to a conclusion::

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