When levothyroxine wont manage UAT HELP.......w... - Thyroid UK

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When levothyroxine wont manage UAT HELP.......what's next anyone else suffering

Localstore689 profile image
17 Replies

UAT on levothyroxine 100mcg now on 150mcg still feel terrible. Dr tested today T3&T4 as we are struggling to manage UAT I feel absolutely awful lost my spark very depressed weepy feel so I'll tired lifeless dont know what to do to help myself m so depressed weeping I also take apple cider vinegar tablets high strength vitamin D and B12 my Blood results due back Wednesday

Is there light at the end anyone else having trouble getting UAT Managed stable

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Localstore689 profile image
Localstore689
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17 Replies
SeasideSusie profile image
SeasideSusieRemembering

Localstore689

In order to offer you any helpful suggestions we need to see your test results, along with their reference ranges please.

For a full picture we need the following:

TSH

FT4

FT3

Thyroid antibodies

and because optimal nutrient levels are important we also need to see:

Vit D (result and unit of measurement)

B12 (result, range, unit of measurement)

Folate

Ferritin

Please also say what supplements you current take, dose and brand.

Localstore689 profile image
Localstore689 in reply toSeasideSusie

Ok thankyou for speedy reply I shall ask when they call with Results

It's a terrible illness to suffer from I'm just not a happy bunny at the mo x

SeasideSusie profile image
SeasideSusieRemembering in reply toLocalstore689

Are you in the UK? If so can you manage to pop down to your surgery? Here in the UK we are legally entitled to our results. When given verbally, and even if hand written, unfortunately it's possible to make mistakes or leave off valuable information. A print out is the best way to get full and accurate information so we should always ask for that.

Do post what you have when you've received it :)

Localstore689 profile image
Localstore689 in reply toSeasideSusie

Thankyou I shall request this yes in in uk Scotland

When I requested they check both T3&T4 my Gp was very nice and stated herself this was the next move as i am maybe a suffer who needs treatment for T3 & T4 but if results confirm then I need to be refered to an Endocrinologist I went in firm as there seems to be a problem getting it managed i also asked my local msp to step in and i have just given him Authority to talk with NHS re my health he will act accordingly when i have my Results back on Wednesday 🙌

SeasideSusie profile image
SeasideSusieRemembering in reply toLocalstore689

I'm not sure but have it in the back of my mind that in Scotland it may be Total T3 that is tested rather than Free T3. Total T3 is not a useful test, it's Free T3 that tells us what we need to know. Anyway, see what comes back.

Localstore689 profile image
Localstore689 in reply toSeasideSusie

Ok the hospital will call me Wednesday I shall ask them what test type they did thankyou

SlowDragon profile image
SlowDragonAdministrator in reply toLocalstore689

Likely you have autoimmune thyroid disease also called Hashimoto's. Important to get thyroid antibodies tested to confirm this

About 90% of all primary 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_...

It is complex...but we can make progress.

Getting vitamins optimal is frequently first step

Many people find strictly gluten free diet helps or is essential

Recommend Getting Coeliac blood test first just to rule it out while still eating high gluten diet

SlowDragon profile image
SlowDragonAdministrator in reply toSeasideSusie

I think in Scotland they tend to do total T3 test (Prof Toft seemed to always did total T3)

SeasideSusie profile image
SeasideSusieRemembering in reply toSlowDragon

Yes, I did think so. Not a lot of help is it!

Localstore689 profile image
Localstore689 in reply toSeasideSusie

The vitamins that I have been taking are

Super strength 1500mg Apple cider vinegar tablets

Nu vitamin b12 1000

Nu vitamin d3 4000

SeasideSusie profile image
SeasideSusieRemembering in reply toLocalstore689

Localstore689

Did you test Vit D before supplementing? It's essential so that we can base our dose on the level at the time of testing, then regular testing is required - 3 months after first starting to supplement to check level, then when the level has reached that which is recommended by the Vit D Council/Vit D society, which is 100-150nmol/L, then we change to a maintenance dose and check levels twice a year to keep within the recommended level.

Is your D3 an oil based softgel rather than a tablet or capsule?

Do you also take D3's important cofactors? D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Did you test your B12? Are you also taking a good bioavailable B Complex with methylfolate (not folic acid) and methylcobalamin (not cyanocobalamin). A B Complex should be taken when taking B12 as it balances all the B vitamins.

Localstore689 profile image
Localstore689 in reply toSeasideSusie

No Vitamin D was not tested nor was my B12

I just read reports that stated it helped with UAT

I will know more on Wednesday what she all Tested as my b12 was checked in 2015 so I think before she said this shes testing it

I took all vitamins into gp last week to ask her if they were ok to take she looked at bottles and said yes ok why are gps not guiding me better i feel so alone with this illness

Localstore689 profile image
Localstore689 in reply toLocalstore689

What do you suggest I do going forward wait for results and let you know Wednesday x

SeasideSusie profile image
SeasideSusieRemembering in reply toLocalstore689

GPs aren't taught about nutrients, optimal levels, etc. They wont have a clue about companion nutrients/cofactors.

It's essential that Vit D is tested because if we don't take enough it wont help to raise a low level. If we are in the "Deficiency" category then we should take loading doses to start with for the first few weeks. Vit D is fat soluble so excess will be stored and can lead to toxicity. So you can see why it's essential to supplement, where necessary, at the correct dose and to monitor levels regularly.

There's no point in taking B12 if we don't need it, that's just wasting money. B vitamins are water soluble so any excess is excreted, but it's still not worth taking them if our levels are good. Our B12 store is good for at least 2 years. But if our B12 level is very low or below range then we need testing for B12 deficiency or pernicious anaemia and treated accordingly. So again, you can see it's essential that we test.

Folate and B12 work together so folate should be tested alongside B12 as we can have folate deficiency which would need prescribed treatment.

It's also necessary to have a good level of ferritin as this helps thyroid hormone to work. If ferritin is low when tested, this can suggest iron deficiency anaemia so further testing of iron panel and full blood count would be necessary.

Post what results you get on Wednesday and we can find a way forward from there :)

Localstore689 profile image
Localstore689 in reply toSeasideSusie

Sorry Have Gp tomorrow afternoon will update in evening.....

Having another medical issue post menopausal bleeding so have examination tomorrow afternoon x

Localstore689 profile image
Localstore689 in reply toLocalstore689

T3 is ok gp said however postmenopausel bleeding examined and Gp is referring me to specialist feeling anxious home now and I've feet up watching some tv to take my mind off things x

Localstore689 profile image
Localstore689 in reply toLocalstore689

9 months on and I'm now on 150mcg levothyroxine.

I honestly think levothyroxine is clashing with my other medications one being venaflaxine I take 225mg as my depression has gradually got worse so due to covid bloods was stopped had bloods 2 weeks ago dr says bloods satisfactory.

I then wrote letter to gp explaining how I really do believe levothyroxine is causing my mental health to fall back into dark places again

I reached out to nhs psychiatric hub who have been really helpful and called me to discuss what is going on with my medication she then contacted my gp and informed her that I am struggling so the plan was a telephone consultation to go over medication so I've to reduce levothyroxine to 125mcg for 8 weeks then get bloods done so am going to buy a kit from medichecks to get full reading and b12 vitamin d and folate checked around the same time so I will have medichecks results to show her.

What a terrible time I'm having still waiting on gyno app I've now had 2 referrals and local nhs has 69 week waiting list I still havent had routine smear since march 2020 and I'm anxious x

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