Help with latest results: I have my latest Blue... - Thyroid UK

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Help with latest results

Traceycrete profile image
18 Replies

I have my latest Blue horizon results, which i would like to get some advice on from you lovely people.

TSH 0.15 0.27-4.20

Free T4 12.9 12.0-22.0 9% thru range

Free T3 4.90 3.1-6.8 49% thru range

Ferritin 143.0 13-150

Magnesium 0.81 0.7-1.0

Cortisol 499.0 166-507

Vit D 79 75-200 is optimal

Vit B12 399 145-569

Serum Folate 7.10 8.83-60.8

i am currently taking 75mg Levo/10mg Liothyronine

Vit D spray

Probiotic

Folate 400ug per day (Cytoplan) since July 22

I also have the DI02 Gene variant which makes it difficult to convert T4 to T3

I started HRT 3 pumps per day and 1 X Progesterone in Oct 22

i am concerned mainly about the low Folate which cannot understand why so low when i have been medicating that, also my free T4 is very low. Looking at these results it looks like i need increase in Levo which my Endo in July 22 would not agree to because of the TSH.

July 22 results were

TSH 0.06 same ranges

Free T4 13.1

Free T3 4.59

He suggested i try HRT for my symptoms that are still hanging around such as

Fatigue/Foggy brain etc. After 3 months of HRT this hasnt improved although aching joints have improved. Doctor advised me get a blood test after 3 months to see if HRT has lowered my readings as that is possible but of course lab only tested T4 even though T3 was requested, hence i did Blue horizon.

I now have to have a dreaded conversation with my private endo who seems only interested in my TSH, so would love anyones opinion before i talk to him .Im thinking i may have to self medicate a Levo increase and see what happens any suggestions? Thankyou

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Traceycrete
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18 Replies
Jaydee1507 profile image
Jaydee1507Administrator

It does look to me like you need an increase in Levo, however you manage that.

About the folate, some people do need more than is in a standard B complex. I take 1800mcgs a day to remain optimal and I wasn't completely deficient before but I do have the MTHFR genes. Buy some 400mcg methylfolate, Jarrows do a good one and start adding that slowly, increasing every few weeks. You will probably feel when you have enough. You will likely need that for life.

Traceycrete profile image
Traceycrete in reply toJaydee1507

Thankyou for replying, much appreciated. I have ordered the igennus B complex to try and I do have some Folate vits left so will try that then. I always worry that I’m overdosing but I think it’s water based so the body probably gets rid of the excess. Thanks again

Jaydee1507 profile image
Jaydee1507Administrator in reply toTraceycrete

Just bare in mind that GPs prescribe 5mg (5,000mcgs) of folic acid for folate deficiency so you're a long way off overdosing. So long as you're keeping an eye on blood numbers with blood tests you can't go too far wrong.

The recommended B complex here is the Thorne one Basic B, there's a similar product by Vitablossom too. The Igennus product has added vit C which I believe can interfere with absorption of some of the other vitamins.

Traceycrete profile image
Traceycrete in reply toJaydee1507

oh well that’s reassuring then , I didn’t realise GPS gave that quantity. I will change to Thorne B then. Thankyou for your help.

SlowDragon profile image
SlowDragonAdministrator

most people when on levothyroxine plus small doses of T3 find they need BOTH Ft4 and Ft3 approx 70% through range

Your Ft4 is most likely too low

Get 25mcg increase in levothyroxine to 100mcg

Which brand of levothyroxine are you currently taking

B12 and folate far too low

Do you have Hashimoto’s

Are you on strictly gluten free diet or dairy free diet

FancyPants54 profile image
FancyPants54 in reply toSlowDragon

It's not that easy though. Her private Endo. said no to an increase. We pay for help and still struggle to get what we need. It's just not on.

Traceycrete profile image
Traceycrete in reply toSlowDragon

I agree FT4 is too low so may have to experiment myself if Endo will not increase Levo. Even though I have problems converting T4 to T3 I presume some will convert. Was thinking maybe taking 100 mcg 3 days a week to start off with as it wouldn’t be a shock to the system? Or would you recommend 100mcg every day? I’m taking Accord 50mg and I cut one in half to make the 75mg. I do have Hashimotos but my numbers have come down considerably over the last couple of years. Thanks for the info and advice, I appreciate it.

SlowDragon profile image
SlowDragonAdministrator in reply toTraceycrete

yes makes sense to try increasing on just 3 days week initially

Retest in 6-8 weeks

Traceycrete profile image
Traceycrete in reply toSlowDragon

Thankyou , I will give it a go especially if the Endo will not increase it. Just one thing about the TSH I would like to ask. Am I correct in saying that we only need to look at T4 and T3 levels when on replacement as I have read on the forum before? The TSH is redundant as it doesn’t need to send a signal from the pituitary gland . Do people get a negative number for their TSH reading and just not worry about it?

SlowDragon profile image
SlowDragonAdministrator in reply toTraceycrete

Your TSH isn’t too low

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

in an ideal world TSH would stay over 0.03

In reality, taking almost any dose of T3 then TSH frequently drops to 0.01

Ft4 and Ft3 and symptoms then become most relevant ….not TSH

Traceycrete profile image
Traceycrete in reply toSlowDragon

Thankyou, interesting reading.

SlowDragon profile image
SlowDragonAdministrator

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins)

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

Or

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

tattybogle profile image
tattybogle

TSH isn't exactly redundant .. it has other roles apart from just asking the thyroid to make T4/T3 .

eg. It has a bit of an effect in regulating the deiodinases (DIO1 DIO2 DIO3) which are responsible for converting T4 to T3 (and T4 to reverse T3, and T3 to T2). and some cells ( eg brain) prefer to make their 'own' T3 from T4.... if we don't understand it fully , it's not smart to ignore it completely .

If we argue to medics that "it's no longer relevent because we don't need to send a message to our thyroid anymore" , we play into their hands .. if that is all we appear to understand about what it does , then we just confirm their assumption that we don't know what we are talking about , and they know better.

In an ideal world you probably don't want it become completely supressed.

But for some people , especially if they take T3, this is not always possible unless they remain undermedicated.

And even though we no longer need to send the message TO the thyroid (feedforward role ) , the TSH level IS still a reflection (feedback role ) OF our overall thyroid hormone levels ,which is why Doctors constantly bang on about it...

BUT the important bit to understand about this is that this 'reflection' becomes slightly distorted / altered once we take thyroid hormone (and most medics have not kept up with their thyroid research 'reading' and so they have not understood this bit yet .)

The TSH relationship to our T4/T3 levels 'shifts' a bit once we take thyroid hormone replacement:

~ on levo you get~ relatively higher T4/ lower T3 /and lower TSH , than what you had when your own thyroid was producing your hormones. (because once we need to take thyroid hormone, the damaged /missing thyroid is no longer adding much/ any 'readymade' T3 to the mix, so we need to take relatively more T4 to compensate for the loss of the ready made T3 that the thyroid is no longer making, and this lowers our TSH a bit more than our natural level of T4 used to )

~ when you take T3 the TSH often ends up extremely low or supressed .(because T3 has a relatively greater suppressive effect on TSH production than T4 does ).

If it is possible to keep TSH at a reasonable level rather than totally supressed , by carefully adjusting to the lowest doses that still allow us to feel well , then it's a good aim to have ,

But some people simply can't make that happen and still feel well .. some people end up with very low TSH at modest levels of T4 /T3 that leave them feeling undermedicated and feel better when T4/T3 are a bit higher.

So those people have to prioritise looking at T4 /T3 levels and symptoms and their TSH has to take a back seat. If they let TSH drive (like their GP usually does) they will be undermedicated . and remain unwell.

For some people it's just not possible to keep TSH in range and feel well ,especially when taking T3 .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Evidence showing there was no increase in 'risks' (on Levo) as long as TSH is over 0.04

academic.oup.com/jcem/artic...

for a list of useful discussion on low TSH / Risk vs Quality of life ~ see my reply to this post (3rd reply down )

healthunlocked.com/thyroidu...

Traceycrete profile image
Traceycrete in reply totattybogle

aah I see , didn’t realise the role it plays in DI02 etc. thanks for putting me straight on that. I’m going to concentrate on getting the T4 level up by increasing the levo. One question then, if I increase the levo I will still convert some to T3 even with having the DI02 gene variant? It doesn’t seem to have moved up the scale in the last year so I’m putting that down to low vits, which I’m correcting and not enough levo.Thankyou for the info.

tattybogle profile image
tattybogle in reply toTraceycrete

Yes ...people with those 'other' variants of DIO1/2 do still convert 'some' ... they just convert a tiny bit less efficiently than those who don't .. When they have a working thyroid it can easily compensate for this by making a bit larger proportion of 'ready made' T3... but when those people have no thyroid left to give them any direct T3 to compensate for their less efficient conversion , they may struggle to get 'enough' T3 in all their cells ( not all cells/ organs in the body have the same balance of DIO 1/2/3 . so eg. your heart may not get enough but your liver might . (i have made that up just as an example .. i can't actually remember which organ has what)

You are on the right track , sort vits etc out first .. then see what conversion is like.

Traceycrete profile image
Traceycrete in reply totattybogle

Thankyou so much, have a good day .

arTistapple profile image
arTistapple

With respect to everything that has been said here, I would not pay a private endocrinologist to trot out the same rubbish as poorly trained GPs. The information here is top class but a prescription (in most cases) requires a doctor and preferably a doctor or endocrinologist on TUKs list. Don’t waste any more money on someone reluctant to help you.

Traceycrete profile image
Traceycrete in reply toarTistapple

yes I agree with you. Fact is I need to see one in order to get my Liothyronine anyway. The Endo is on the list and I was impressed with him for the first 18 months but recently it’s all been about the TSH. I can’t waste anymore time being treated this way, I’m in my 7th year of trying to get well life’s passing by and tired of being tired. Thankyou for your reply.

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