Confused again: I am confused yet again, I have... - Thyroid UK

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Confused again

Loopyloo243 profile image
8 Replies

I am confused yet again, I have just received my latest blood results T4 15.3 TSH 0.65 in September my results were T4 14.7 TSH 3.62 the doctor says it's all normal but I don't feel ok at all I'm still so very weary all the time and feel generally under the weather. I was diagnosed with Hashimotos in May 2018 with a Thyroid Peroxidase of 745.0 range being 0.0 to 60.0. I am currently taking 1mg of Levothyroxin. I have a telephone appointment with my doctor on 13th Jan and would like some guidance on what to ask her.

Many thanks

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Loopyloo243 profile image
Loopyloo243
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greygoose profile image
greygoose

Difficult to comment on blood test results without the ranges. However, just testing TSH and FT4 cannot tell us how much of the active hormone, T3, you have in your blood. If you don't convert very well, it will be pretty low, so that would make you feel bad. But to tell how well you convert, you need the FT4 and FT3 tested at the same time. And, I very much doubt if your doctor would know anything about any of that, because she didn't 'do' it in med school. They don't. And to the majority of doctors, if your results are within the ranges, then you've got to be well. They know nothing about the subtilties of dosing or the difference between 'in-range' and 'optimal'.

Not quite sure about your dose, there. Is it 100 mcg levo you're taking? We don't normally talk in mg. But, 100 mcg is quite a low dose, so you probably need an increase in dose. :)

Loopyloo243 profile image
Loopyloo243 in reply to greygoose

Many thanks for your reply yes it is 100mcg I'm taking, I did have a T3 done in September but the result came back not indicated so I have to ask the doctor on 13th what that means, what does my TSH of 0.65 signify as it's dropped a lot from my September result of 3.65

greygoose profile image
greygoose in reply to Loopyloo243

I thought I'd replied to this, but my answer seems to have disappeared! Very strange.

Anyway, as far as I can remember, I said, 'not indicated' means that the lab refused to do it, because - in their humble opinion! - it's not necessary. And, their opinion takes precedence over your doctor's opinion!

Your TSH has more than likely dropped because of the Hashi's. Results are prone to jump around with Hashi's. Unless, of course, you've had an increase in that dose during that time?

Loopyloo243 profile image
Loopyloo243 in reply to greygoose

Many thanks for your reply that's very interesting about the labs refusal I will talk to the doctor about it. If I don't get any results with my doctor I think I will probably go down the route if finding a Thyroid specialist privately if I have too, but I am a pensioner and am not sure of the costs.

greygoose profile image
greygoose in reply to Loopyloo243

The main problem would be finding a thyroid specialist - they're as rare as hen's teeth! Endos, whom you would expect to be thyroid specialist, tend to only know about diabetes, and have some very strange ideas about thyroid. So, if you do decide to go that route, research your specialist well before committing yourself.

SeasideSusie profile image
SeasideSusieRemembering

Loopyloo243

You didn't respond to my reply to your other post here :

healthunlocked.com/thyroidu...

Have you had full testing done as suggested? Low nutrient levels bring their own symptoms.

Are you addressing the Hashi's with a strict gluten free diet and supplementing with selenium l-selenomethionine? Some members have found this helps, although there is no guarantee it's worth a try.

You are taking 100mcg of Levo according to your previous post, 1mg is 1,000mcg.

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH and FT4 is completely inadequate, especially with Hashimoto's

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels (and coeliac blood test if not had one)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get vitamins tested by GP Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Come back with new post once you get results and members can advise on next steps

SlowDragon profile image
SlowDragonAdministrator

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

Low vitamin levels affect Thyroid hormone

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

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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

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