First Blood Results - advice please

[Unravel]

Blue Horizon test taken at: 08.05 on 04.06.24

TSH 2.30 0.27 - 4.20 pmol/L

T4 15.5 12.0 - 22.6 mIU/L

T3 3.5 3.1 - 6.8 pmol/L

T4 total 86.5 66 - 181 nmol/L

Anti-thyroglobulin antibodies over 4000 < 115 IU/mL

Anti-thyroidperoxidase antibodies 157.0 < 34 IU/L

Cortisol (Random) 613 166 - 507 at 6am - 10am

Reverse T3 18.0 10.0 - 24.0 ng/dL

Reverse T3 ratio 0.20 ratio

Vitamin D 122 50 - 200 nmol/L

HbA1c 68 Good control 48 - 59

Magnesium 0.8 0.7 - 1.0 mmol/L

CRP 0.97 < 5.0 mg/L

Iron 20.3 5.8 - 34.5 μmol/L

UIBC 33.0 24.2 - 70.1 μmol/L

TIBC 53 45 - 81 μmol/L

Transferrin Saturation 38.1 20 - 50 %

Ferritin 124.0 13 - 150 μg/L

Serum Folate 10.9 8.83 - 60.8 nmol/L

Vitamin B12 235 145 - 569 pmol/L

Active B12 77 37.5 - 150 pmol/L

I’m female, 70 years of age, I was diagnosed as hypothyroid 30 years ago and began taking Levothyroxine and thought that was now ‘sorted’. Significant weight gain followed (to a maximum of over 21 stones - I was 5ft 6ins tall at the time). Friends could not believe I was so heavy when I worked so physically hard. I just continued to diet (to no avail) and shrugged my shoulders, force of spirit kept me going.

Eight years ago to my surprise, I became type 1 diabetic and have been on insulin ever since. At the time of diagnosis, I was hospitalised with DKA (HbA1c 117) weighing just over 12 stones.

Since then my weight has consistently increased. At first I thought the T1D was to blame but have come to realise that other symptoms suggest hypothyroid is causative (and has been all these years). I have asked to be referred to endocrinologist thinking he - as expert on the whole endocrine system would be the person to go to, but he batted me straight back to the GP.

I have had one appointment with GP when I was at the end of my tether with symptoms: low morning body temperature (average 35.8°C), hair falling out, nails which break as soon as they leave the nail bed, anxiety, exhausted all the time, not sleeping well, aches and pains and the feeling of trudging through treacle. I showed him my blood results and he just said they were fine - I was in range so what did I want him to do?

From other forum members experiences, his response was not unexpected. I said I was trying to take responsibility for myself and had started by getting the tests done. I also said that I was disappointed that the endo had pushed me back to the GP because it’s a complicated field. I explained that because I don’t feel well I plan to do a lot of research to understand more. (I’m the 24/7 carer for my elderly disabled husband who has dementia so it’s important that I function as well as possible.)

Thanks to this wonderful forum I can now see that I am not alone and I have gleaned so much over the past few weeks by reading other people’s posts and the very careful and thorough responses from you experts. I have bought Paul Robinsons books but finding time to read them is challenging - I will, but it will take me some time. In the meantime, I will be very grateful for the shortcut of asking on this forum: what is my best next step?

a) request an increase in dose of Levothyroxine from the doctor

(at present on 150μg weight 18 st 7lbs) and then re-test)

b) introduce some T3 to supplement and if so - how and how much

c) something else - at first glance it looks as if I need Folate and Magnesium

I have follow-up appointment with the GP next week. Thank you so much for your support.

[SlowDragon Administrator]

was last dose Levo 24 hours before test

Do you always get same brand levothyroxine at each prescription

Free T4 (fT4) 15.5 pmol/L (12 - 22) 35.0%

Free T3 (fT3) 3.5 pmol/L (3.1 - 6.8) 10.8%

So currently on inadequate dose levothyroxine and poor conversion rate of Ft4 to Ft3

So first step is to get 25mcg dose increase in levothyroxine to 175mcg daily

Perhaps initially increase to 162.5mcg daily for first 6-8 weeks.

High thyroid antibodies confirms autoimmune thyroid disease

Have you had coeliac blood test, if not get GP to test - as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1

Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[SlowDragon Administrator]

vitamin D and ferritin are good

Do you currently take vitamin D supplements?

Serum Folate 10.9 8.83 - 60.8 nmol/L

Vitamin B12 235 145 - 569 pmol/L

Active B12 77 37.5 - 150 pmol/L

Serum B12 and folate low

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 improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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 folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[Unravel in reply to SlowDragon]

Thank you for an astonishingly rapid response SlowDragon

Yes, my last dose of Levo was more than 24 hours before the blood test.

I always receive Accord Levo from the pharmacist, although a few years ago when I was on 175μg the 25μg was by Teva . I now note that mixing brands is not a good idea, so if the GP will increase my dose, I will request 50’s and split them.

My (fraternal) twin is coeliac. I was tested decades ago but not recently. Because of Jo, I don’t have much gluten but will request a re-test and will go GF. Should I keep eating gluten until I’m re-tested?

Before my Blue Horizon blood test, I stopped all vitamins for a week. I normally take:

Vitamin D3&K2 4000 iu/100μg, Vitamin C 1000mg, Zinc picolinate 22mg,

Chelated copper 2500μg, Selenium 200μg

Timings of meds/vitamins are:

Basal and Bolus insulin 04.00 - 06.00 then bolus at meal times, I eat twice a day at 12.00 and 17.00.

Levo at 08.00 - 09.00

Vitamins after midday meal

I will purchase vitamin B complex and add those to the mix.

[Unravel in reply to Unravel]

PS I will read all the links you included in your response, thanks for those.

[SlowDragon Administrator in reply to Unravel]

Because of Jo, I don’t have much gluten but will request a re-test and will go GF. Should I keep eating gluten until I’m re-tested?

Probably not worth retesting for coeliac

You would have to eat high levels of gluten everyday for at least 6 weeks before testing

Suggest you just go strictly gluten free without retest

Zinc picolinate 22mg,

Chelated copper 2500μg, Selenium 200μg

Apparently Hashimoto’s patients often have high copper

I would test these three if possible

You may not need at all, or perhaps only 1-2 times a week

[greygoose in reply to SlowDragon]

Not just Hashi's people, but hypos in general. And if copper is high, zinc is going to be low - they balance each other out, which is why most supplements have both in the right proportions (for healthy people, which we're not). But, it can be the other way round: high zinc, low copper. So, we usually take one or the other, according to need, and testing is necessary to see which one is high, and which low. And taking more of the one that is already high can be very unpleasant! Been there, done that.

[SlowDragon Administrator]

Poor gut function with Hashimoto’s 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 trying

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

Assuming coeliac test is negative you can consider trialing strictly gluten free diet 

(If test is positive you will probably 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

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Retest thyroid and vitamin levels 8-10 weeks after being on 175mcg levothyroxine daily and improving low vitamin levels….and ideally after also being on strictly gluten free diet

Anti-thyroglobulin antibodies over 4000 < 115 IU/mL

Anti-thyroidperoxidase antibodies 157.0 < 34 IU/L

you should see TG antibodies slowly reduce as Levo dose increases and TSH reduces

many, many members find TPO antibodies slowly reduce on gluten free/dairy free diet

[Unravel in reply to SlowDragon]

Thank you, that gives me hope. I will post again when I have made changes and assess how I’m doing.

I was going to say, “you have no idea how supported I feel by your comment and advice”, but for everyone on this forum you are the voice of knowledge and reason and we thank you for it.

[SlowDragon Administrator in reply to Unravel]

I only recovered my health with the help and support of the members on here

No medic I saw ever considered gut and vitamin connection to Hashimoto’s

Personally gluten free and dairy free have been a revelation

More on my own thyroid journey on my profile

[Unravel in reply to SlowDragon]

I’m just home from GP appointment who said I was in range and therefore treatment was working. I emphasised all my symptoms, showed him the Blue Horizon blood results (which he asked to keep) but he was not prepared to increase the dose of my Levothyroxine.

Please could you let me have a list of enlightened private endos. I live near Huddersfield but am prepared to travel. Thank you

[SlowDragon Administrator in reply to Unravel]

Oh dear

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

meanwhile work on improving low vitamin levels and cutting gluten out completely