Thank you and update

[Shebbie]

Thank you to admin and to members who have messaged with answers to my earlier query re T3

Admin you suggested posting blood results so I thought I would, at this stage post my most recent results. As advised I have just ordered another comprehensive test from one of your suggested laboratories (different one than my usual choice which is also on your list)

I will update these results once my new test is complete. But for now I thought I would post the results I have and my current state of health which is poor and declining (exhaustion, brain fog, lack of stamina, rapid heart beat and some missed beats (currently awaiting cardiology consult following routine testing) and all the other usual (and some not so usual eg ear and scalp issues).

So here are my results at date of last test (June 2022)

8th March 2022 (Annual G.P. test) Result Range

Serum C reactive protein <5mg/L 0 -10

Serum Folate 9.3ug/L 3.0 - 20.00

Serum Vit B 472ng?L 160 - 1000

Serum Ferritin 38 10 - 291

Serum TSH 0.37 0.3 - 6.00

Most recent private test June 2022 (Medichecks)

Inflammation CRP HS 1.03 mg/L (Range: 0 - 5)

Iron Status Ferritin 55.9 ug/L (Range: 13 - 150)

Vitamins Folate - Serum 4.31 ug/L (Range: > 3.89) Vitamin B12 - Active 133.0 pmol/L (Range: 37.5 - 150)

Vitamin D 59 nmol/L

<25 Deficient

25 - <50 Insufficient

50 - 75 Adequate

>75 - 200 Optimal

(Range: 50 - 200)

Thyroid Hormones

TSH 1.59 mU/L (Range: 0.27 - 4.2)

Free T3 4.32 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 17.0 pmol/L (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies X 301 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies X 100 IU/mL (Range: < 34)

Comments from test lab doctor :

I can see that you are taking this test to monitor your dose of levothyroxine.

I’m pleased to report that you thyroid stimulating hormone is in the normal range which suggests that your levothyroxine dose is correct.

Your thyroglobulin antibodies are slightly higher than in your last test. You thyroid peroxidase antibodies have decreased since your last test. An elevation in these antibodies is to be expected in those who have Hashimoto's thyroiditis.

Your vitamin D levels are at the low end of the normal range. vitamin D levels which are not in optimal range can affect your motivation to exercise, and your speed and stamina whilst exercising. Taking 400 iu (10mcg) per day will help to keep your vitamin D at healthy levels

[SeasideSusie Remembering]

Shebbie

At the time of your June test the following observations are noted

Ferritin was low at 55.9, it's recommended to be half way through range although some experts say the optimal level for thyroid function is 90-110ug/L.

Folate was very low at 4.31 ug/L (Range: > 3.89). The actual range is 3.89-19.45 and folate is recommended to be at least half way through range.

Active B12 was very good at 133.

Vit D was low at 59nmol/L and the Vit D Council, Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at east 125nmol/L. The 400iu suggested by Medichecks is a child's dose and is unlikely to raise your level to anywhere near the recommended level. You are more likely to need 4,000iu D3 daily along with D3's important cofactors - magnesium and Vit K2-MK7.

Thyroid results suggested that you may have benefitted from an increase in your dose of Levo.

Have you been taking any supplements and was your Levo increased?

Remember to do your new test as we advise:

* No later than 9am

* Water only before test

* Last dose of Levo 24 hours before test

* No biotin/B Complex or any supplement containing biotin for 3-7 days before test

Post results/ranges when you have them for comment.

[Shebbie in reply to SeasideSusie]

Thank you for your response.

I have to confess that I have kind of given up on ever feeling well for the past few years. I haven't looked after myself as I once did considering my age against me (no right to feel well at this age - depressive state I guess)

I have continued to take my dose of Levothyroxine and have added in a tiny amount (not enough) T3 (reason being I was afraid of my supply from years ago running out and not being confident enough to source any more - I've now overcome that thanks to members help)

But the words of the last endocrinologist I saw (for an extended period with several blood tests) that Levothyroxine doesn't convert effectively in my body, that he recognised my significant symptoms but had nothing to offer (beyond a 3 month trial of T3 which I had with some improvement but insufficient in his view to prescribe it for me) echo in my mind. I now question the Levo I take as to what benefit it is providing and recently I am feeling 'wired' and anxious when I do take my full dose. When I reduce it and add in the tiny bit of T3 I feel less anxious. I also now have rapid heartbeat and missed beats (waiting to see cardiologist but won't be for another 6months).

So, for me, this is like stepping back on a path I once knew how to negotiate only to find I need a little help to find the right path again.

I haven't been supplementing with much apart from vit B12, D, C, and sometimes iron.

I'm going to wait until the results of the test I will submit early next week before changing anything.

Thank you for your advice. I really welcome and appreciate it and will revisit it once my new blood results are available. Your comment about the amount of vitamin D is really interesting. Thank you so much

[SeasideSusie Remembering in reply to Shebbie]

Shebbie

I have to confess that I have kind of given up on ever feeling well for the past few years. I haven't looked after myself as I once did considering my age against me (no right to feel well at this age - depressive state I guess)

I don't know your age but I do understand what you are saying here. I think sometimes doctors' attitudes to people over a certain age make us feel categorised and not worthy of them trying to help us get well. I'm sure some GPs are wonderful but certainly not all, and the current state of affairs within the NHS doesn't help when referrals are really needed when the GP's knowledge has been exhausted but getting a referral, or the consultant to agree to seeing the patient, can be like trying to get blood out of a stone.

Do come back with your new results, and if you are taking both Levo and T3 remember that last dose of T3 should be 8-12 hours before test (split dose day before if possible) and last dose of Levo 24 hours before test.

[Shebbie in reply to SeasideSusie]

Thank you for your understanding of how it can feel and for your advice re preparing for the test day.

The past couple of years has been soul destroying for many. Hope is at an all time low or that's how it feels to me. We need people power to push back at times - and this is such a time I believe. Our GP's are as caught up in whatever it is that is occurring in the world as any other service provider. I have no criticism of any individual - only the system they operate within.

I'm glad I've roused myself to at least try again.

[1tuppence in reply to Shebbie]

Shebbie...no matter your age, you have every right to feel as well as you can. We all do.

Being under-medicated/under- nutritionally supported, can affect us.

Has your levothyroxine brand been changed at all recently?

[Shebbie in reply to 1tuppence]

It changes with every prescription I collect, I did speak to the pharmacist when I read some time ago which brands may affect patients but he told me they have no choice in what comes and have to use what's cheapest at the time.

So I don't even check the brands now but I do know that taking Levothyroxine is causing me to have anxiety and stomach issues especially when trying to sleep.

I also asked whether the pharmacist would be able to source T3 for me from abroad to get the best price should I be able to obtain a private prescription (that would necessitate a private consultation with an endocrinologist in the first instance). The pharmacist looked very confused and his response was that he could try but didn't hold out much hope of finding a source for me.

And so I gave up on that attempt

But I'm back now doing it for myself and very grateful for all the help I'm receiving here along the way

[1tuppence in reply to Shebbie]

Your pharmacist is incorrect. Please see my recent Posts on here?

What you need is to find out which brand of levothyroxine suits you the best....not what the pharmacist is able to get.

Your GP can then write on your repeat prescription which brand suits you. and state "only" for that brand. I know this because this is exactly what my GP has now done.

Sometimes we simply have to recognise what we need for us to be as well as possible xx

Should you manage to get a private prescription for T3 from an endo, there are pharmacies who will provide it for you. Ditto NDT.

Despair is not your friend This forum is xx

[Shebbie in reply to 1tuppence]

I love this reply and recognise that I need my friends and they live here. Thank you so much

[1tuppence in reply to Shebbie]

You are so very welcome...and Yes, we do xx

[SlowDragon Administrator]

Thyroglobulin Antibodies X 301 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies X 100 IU/mL (Range: < 34)

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Have you had coeliac blood test done

Are you on strictly gluten free diet and/or dairy free diet

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. 

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies 

If 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.

All four vitamins need to be at OPTIMAL levels

See what next test results show

[Shebbie]

I'm not gluten free but have been in the past and felt well living g.f.

As I say in my post I've sunk into lack of self care especially now that doctors are so hard to reach. This is my time for striving for a return to some kind of better existence.

I did have a test for coeliac some years ago which didn't show me to suffer from coeliac disease (through my gp)

I also did a hair analysis test privately which indicated intolerance to wheat flour gluten and even more to rice flour gluten which is in gf bread. I was intolerant to most of the foods in my diet such as potatoes, tuna, peppers.

I think I felt overload so I just stopped eating bread and as I say I felt better but I have lapsed back into comfort eating and bread features high.

I need to take thinks slowly and follow all the advice I'm receiving here as I used to do. Being older makes it feel harder but I need to do this.

Thank you