Advice before GP phone consultation, please? - Thyroid UK

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Advice before GP phone consultation, please?

Klawd profile image
Klawd
•13 Replies

Trying to get trial T4/T3. GP has ref me to NHS Endo (not holding my breath 😅) been told 2yr wait, but I'm gratefull he did it.Would like some expert advice on my T3 levels please? I think they are too low GP insists they're fine and wants me to get my head tested 😨 It's wearing me out the constant battle..... sometimes think I do just need my head tested!

I try to educate myself be reading much as i can of all the knowledgeable post on here - but can't seem to process or take it in- I do remember I used to have a functional brain....once.

So I think I need my Levo upping to help raise my T3? He reluctantly agreed if T3 was still in lower range after latest test hence the phone consultation booked with him on Monday and would really appreciate some/ any help in being prepared and confident in my self for the next round, please?

Currently on 150mg levothyroxin

18/09/23 T4 - 21.6 (11 - 23) TSH- 0.38 (0.27 - 4.5) T3- 3.56 (3.1-6.8)

13/04/23 T4 - 21.8 (11 - 23) TSH - 0.67 (0.27- 4.5) T3 -3.77 (3.1 -6.8)

24/02/23 T4 - 20.4 (11 -23) TSH -1.5 (0.27 - 4,5) T3 - 3.46 (3.1 - 6.8)

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Klawd
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SlowDragon profile image
SlowDragonAdministrator

Was testing done as recommended

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Do you always get same brand levothyroxine at each prescription

when were vitamin levels last tested

What vitamin supplements are you currently taking

ESSENTIAL to test both thyroid antibodies at least once

Has this been done?

Clearly Ft3 is very low

FT4: 21.6 pmol/l (Range 11 - 23)

Ft4 is 88.33% through range

FT3: 3.56 pmol/l (Range 3.1 - 6.8)

Ft3 only 12.43% through range

most people when adequately treated will have Ft3 at least 60% through range

Very unlikely that NHS endocrinologist will agree to referral as TSH is within range

FIRST step is to get thyroid antibodies and vitamin levels tested

Improving all four vitamins to OPTIMAL levels can help improve conversion rates of Ft4 to ft3

If your hypothyroidism is autoimmune, usually confirmed by high thyroid antibodies, then get coeliac blood test via GP BEFORE trailing strictly gluten free diet

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Klawd profile image
Klawd• in reply toSlowDragon

Hi Slow Dragon, thank you for replying yes I try to get test early as I can around 9am, earlier is not an option at surgery. I don't eat before & take Levo after test, think I get same brand Wockhardt & Accord. You kindly suggested I may have hashis previously (no one had ever told me), when I asked my GP he said yes. I take Biotin, Selenium, B12, vit C, Zinc, vit D& K2 spray & fish oil. My last Medicheck Dec 21 Thyroid Peraxidase 121 < 34 , say vitamins & minerals excellent.Genetic test results D101 - AA & TT decreased clearence of rT3 from circulation, low convertion of T4 to T3.

Do you think uping my Levo will help raise my T3? T3 has always been in the 3's level (on the 5 times they have tested it) regardless of T4 TSH levels.

I will look to get Coeliac blood test, thank you.

SlowDragon profile image
SlowDragonAdministrator• in reply toKlawd

Do you think uping my Levo will help raise my T3? T3 has always been in the 3's level (on the 5 times they have tested it) regardless of T4 TSH levels.

No

Ft4 already right at top of range

Likely to benefit from small doses of T3 prescribed alongside (slightly reduced dose) levothyroxine

List of thyroid specialists and endocrinologists who will prescribe T3

healthunlocked.com/thyroidu...

Klawd profile image
Klawd• in reply toSlowDragon

Hi SlowDragon, . I am trying to be prepared for me being lucky enough to be offered trial but the understanding of it is beyond me. Have read prev posts where endo have not given appropriate start dose combined T3/T4, how much T3 would you say would be good to start & what reduction T4? Please

SlowDragon profile image
SlowDragonAdministrator• in reply toKlawd

Typically dose levothyroxine reduced by 25mcg daily and small doses of T3 added slowly over few weeks

Initial T3 dose 5mcg waking or 2.5mcg waking and 2.5mcg later in day

slowly increasing to 3 x 5mcg per day

Retest 6-8 weeks later

Klawd profile image
Klawd• in reply toSlowDragon

Feels like I have my own personal (and Amazingly promt) advisers on here 😊 So gratefull, Thank you So much : )

Klawd profile image
Klawd• in reply toSlowDragon

Oh, sorry forgot to say after your advice re upping my Levo I stopped taking the increase and am back on 150mg. Thanks

Digger031145 profile image
Digger031145• in reply toKlawd

were you talking biotin right up to test day?

Klawd profile image
Klawd• in reply toDigger031145

Hi, sorry totally missed your post...combination of the 'Brain Frog' & not being so tech savvy. No Stopped all bout 6 days before test (usually stop biotin a week before but didn't have a week notice) Our chemist is very good, he suggested stopping all 48hr before so I erred on the side of caution : )

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Post discussing gluten

healthunlocked.com/thyroidu...

Klawd profile image
Klawd

Thank you so much for taking the time to share your knowledge with me . I'm afraid I have shot the gun on this one & upped Levo soon as I had last test from 150 to 175 (because somewhere in my jumbled head I though this would help raise T3?) I previously was on 200mg Levo cpl years ago & initiated reduction myself with the GP because I found out I shouldn't be having along with my breaky - which I'd done for many years!!!! (Think this is when you told me about Hashis)Since reducing from 200 levo I have never been over the range even when I was previously on 175 before. I hope this makes sence it seems such a jumble, iv really struggle with brain frog & find things such a chore .I have also started taking Betaine Hydrochloride with pepsin for last couple of days with the hope it may help gut issues?

Thank you for bearing with me : )

serenfach profile image
serenfach

My endo thought that by upping my T4 it would bring my dire T3 up. If you are a poor converter, it does not work like that. Think filling the car tank with petrol, but not ever adding oil. Yes, the car will run for a while and then it all goes to pot.

You need T3 separately. The difference you will feel after a few weeks will be huge, I got my brain back, which was nice. I had missed it. I went on to take NDT and felt better again.

Tell your GP just scraping in at the bottom of the range is not acceptable. Would he wear shoes that were two sizes to small? And your thyroid is not in your head...

I hope you get it sorted soon and feel better.

Klawd profile image
Klawd• in reply toserenfach

Thank you serenfach, I really appreciate the reassurance, It given me Hope as I feared mine was maybe beyond retreving. My GP is quite good & listens, quite new to the surgery but I'm not sure how much experiance he has. He ref me for genetic tests & received a decline letter back (which he forwarded to me.) He has ref me to NHS endo & I am on the list, they told me 2yr wait.

Last week after he told me he wanted to get my head checked 😩 because im fixated on T3. I tryed to explained best I could bout the low T3 & wait for endo, he said if I go private & get script for T3 they would fill it. Im happy to do this but wanted him to confirm it first, saying I understood it must be from NHS endo (is that right?) think that flustered him a little 😅 Anyhow I have phone consultation on Monday, hopefull that they may accept private Endo script.

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