Latest results, confused again, : So GP wants... - Thyroid UK

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Latest results, confused again,

Polo22 profile image
11 Replies

So GP wants discussion about reducing Levo, last time bloods through them 12/10/22 TSH 0.18 0.27-4.20. FT4 23.4 12-22, refused FT3. BlueHorizon 31/10/22 TSH0.51 0.27 - 4.20, FT4 22.1 12-22. FT3 3.88 3.1- 6.8. Vit D 65nmol/l HbA1c 50 IFCCmmol/mol.

repeated, 22/04/23 wanted BlueHorizon never received kit got refund went with Monitormyhealth TSH3.64 0.27-4.20, FT4 19.2 12-22, FT3 3.6 3.1-6.8.

Vit D 53nmol/l, HbA1c 58 IFCCmmol/mol, HB 149 126-270 ? ferritin 123ug/l TSAT 23% ?

B12 >300, ? 40-300 Folate 12.3 ug/l . I won't use this company again I don't think, I don't like the way the results are presented, mostly no reference ranges included, the usual "it's in range so it's normal. Weird coloured charts/graphs

I indicated on forms that I was Levo, the note at beginning of thyroid results says your results are all normal and this interpretation is based on no pre existing thyroid condition and not being on treatment, I have emailed pointing out I have no thyroid gland and am indeed on Levo but don't expect a response anytime soon. Bank holiday as well.

Help oh wise ones, feel really fed up. Especially with FT3 and HbA1c going up by 8 since January, weight is piling on, stopping all supplements for 10 days or more for tests, don't have symptoms of diabetes no thirst, no excessive peeing, have been careful about food intake, other than bread don't eat processed foods, if I have cereal it is weetabix and banana , or oats plain non diary no sugar yoghurt raspberries with bit of honey, , fed up waffling now

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Polo22
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SlowDragon profile image
SlowDragonAdministrator

TSH 3.64 (0.27-4.20)

FT4 19.2 (12-22)

FT3 3.6 (3.1-6.8)

Vit D 53nmol/l,

HbA1c 58 IFCCmmol/mol,

HB 149 126-270 ?

ferritin 123ug/l

TSAT 23% ?

B12 >300, ? 40-300

Folate 12.3 ug/l . 

Was test done early morning and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Vitamin D is far too low

B12 and folate look low

HBA1C looks very high

TSH is too high and Ft3 far too low

Polo22 profile image
Polo22 in reply toSlowDragon

Hi yes early morning test. Currently on 150mcg , always get the same brand, not without a fight mind. Take vit D, vit K, vit B complex, magnesium, SI B12, selenium with A,C,E vits , stopped everything about 10 days before test,

The HBA1C going from 50 up to 58 has really p****d me off , it had never been a problem pre 2019 when I started on venlafaxine within 6 months had suddenly gone up to 49 and dx type 2 diabetic, no one told me at the time. I came off them after about 18months or so , only after stopping did I find out they can muck up ability to regulate glucose and cause insulin resistance. I am picky eater, don't eat ready meals or processed stuff, no sausages or burgers unless I make my own, burgers that is. At a bit of a loss, have been trying to shift some weight, eating reasonably healthy, keep hydrated, but just feel ropey

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

So results show poor conversion

FT4: 19.2 pmol/l (Range 12 - 22)

Ft4 is 72.00% through range

FT3: 3.6 pmol/l (Range 3.1 - 6.8)

Ft3 only 13.51% through range

helpful calculator for working out percentage through range

thyroid.dopiaza.org/

You’re highly likely to need addition of T3 (liothyronine) prescribed alongside levothyroxine

Specialist thyroid doctors and endocrinologists who will prescribe T3

healthunlocked.com/thyroidu...

you only need to stop vitamin B complex and/or any other supplements that contain biotin 5-7 days before test.

Continue other vitamin supplements until day before test

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

How often are you injecting B12

Have you tried supplements instead

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement as well as a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

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

vitamin D unlikely to have dropped significantly in week you stopped vitamin D. So very likely not taking high enough dose vitamin D.

How much vitamin D are you currently taking

HBA1C likely to improve as Ft3 increases

Meanwhile……Try cutting beige carbs - bread, biscuits, potatoes, rice, pasty etc

diabetes.org.uk/guide-to-di...

Polo22 profile image
Polo22 in reply toSlowDragon

I was trying to remember to inject weekly , pain and tingly numbness tends to creep back in if longer than 3 weeks . Have 10 ampules left to be used before November so might try drops after. The vit D tablets I have are 4000 units, was taking 2 then one alternately, guess I need more? Will look to source some separate folate too, it got as low as 2 in past. Carbs are my downfall, but it's mostly bread, . Probably do need to go down the T3 road, don't think I can afford private will look into it though. Thank You so much it gets all a bit much sometimes doesn't it trying to fight for your own health when all my GP wants to do is fill me full of meds.

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

Rather than just taking folate supplement take a separate vitamin B Complex to keep ALL B vitamins in balance

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help maintain B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

What was reason for thyroidectomy

Have you ever tried strictly gluten free diet

Many autoimmune thyroid patients find strictly gluten free diet astonishing improvement even after thyroidectomy

As your thyroid started playing up after pregnancy it’s likely autoimmune

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 perhaps consider trying dairy free too.

Approx 50-60% find dairy free beneficial

Polo22 profile image
Polo22 in reply toSlowDragon

Developed a goitre after second son born, 6th pregnancy, at first there was mention it may be cancer, it was affecting swallowing surgeon told me after op he couldn't save any of thyroid as it was absolutely covered in nodules. Did wonder about that. Tried out some gluten free, wasn't strict though, worth considering GP did test for coeliac it was 0.5u/ml so said neg . My youngest is lactose intolerant so might start sharing her stuff 😀 so appreciate the advice, my GP looks at me like I am completely deluded hen I mention anything,

SlowDragon profile image
SlowDragonAdministrator in reply toPolo22

improving terrible vitamin levels first step

Then try dairy free or gluten free

Try the other one 2-3 months later

Personally, like thousands of members I found gluten free astonishing improvement in 2016. Very reluctantly went dairy free last year…..and also (annoyingly) significant improvements

Likely to eventually need T3 prescribed alongside levothyroxine…..but vitamins must be optimal first

Polo22 profile image
Polo22 in reply toSlowDragon

just remembered too poor vit D can increase weight, make it difficult to lose weight, so yes need to sort that out

Polo22 profile image
Polo22 in reply toSlowDragon

Used to use Thorne Basic B. Now have some Liposomal Vit B complex (PinkTribe) , so will look into getting some Folate only, for when testing. Going to look into finding a sympathetic Endo, will have a look at the list see if I can find one near me. If anyone has any recommendations would appreciate a heads up, I am in Liverpool but can drive. Have asked GP few times for referral to NHS Endo, he won't. Will up my Vit D a bit more and magnesium and folate, B12. Guess I'll try the gluten free route too and will try dairy free , I love a bit of thick bread with proper butter 😢, only once a day, don't know what I'll eat, I am very odd about food , always have been. ADHD and ASD are a pain in the arse, think it is ARFID, beyond fussy eating.

pennyannie profile image
pennyannie

Hello Polo :

Can I just add that a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.

We generally feel at our best when on T4 monotherapy when our T4 is in the top quadrant of its range as this should in theory convert to a good level of T3 at around a 1/4 ratio - T3/T4.

The accepted conversion ratio when on T4 only is said to be 1 - 3.50 -4.50 T3/T4 - with most people feeling at their best when they com in this ratio at 4 or under.

So if I divide your T4 by your T3 I'm getting your conversion ratio of 5.33 so showing very poor conversion of the T4 and the obvious solution would be to introduce a small dose of T3 - Liothyronine to rebalance your vital T3 and T4 thyroid hormones.

We also generally feel best, once on any form of thyroid hormone replacement to have a TSH under 1 and towards the lower end of the range - BUT since you haven't a thyroid your HPT axis - the Hypothalamus-Pituitary-Thyroid - on which the TSH relies on working well - is broken - as you have no thyroid and this loop incomplete and open ended.

No thyroid hormone replacement works well until the core strength vitamin and minerals of ferritin, folate. B12 and vitamin D are up and maintained at optimal:

Some people can get by on T4 - Levothyroxine.

Others find T4 seems to stop working as well as it once did at some point in time but find by adding in a little T3 - this restores hormonal balance and well being restored.

Others can't tolerate T4 and need to be on T3 only :

Whilst others find their health restored better taking taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

Up until around 2000 all these treatment options were in your doctors box of tricks and if T4 wasn't ' doing it ' for you s/he had options to switch your thyroid hormones medications around and try the other treatment options.

Sadly now you will need to be assessed by an NHS endocrinologist and it appears that ICB / CCG financial restraints are being prioritised over patient medical needs.

I haven't thyroid - RAI thyroid ablation for Graves Disease 2005 - and I'm now self medicating as the stress of trying to get any help simply exacerbated my symptoms - and now 5 years into looking after myself and much improved.

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