Advice needed on Thyroid please: Hi all, I’ve... - Thyroid UK

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Advice needed on Thyroid please

Tomatoketchup profile image
12 Replies

Hi all, I’ve just received my medical results back and need some advice on what to do next ?? Feeling very tired... no get up and go 😞 I’m on 125 mcg of Levothyroxine and suffer with a sore tongue and mouth ulcers

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Tomatoketchup
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SeasideSusie profile image
SeasideSusieRemembering

Tomatoketchup

Your raised TPO antibodies confirm autoimmune thyroid disease, known to patients as Hashimoto's. This is where the immune system attacks and gradually destroys the thyroid. Did you already know this?

Unfortunately we can't say anything else because we need to see your other results. Can you please post them

TSH

FT4

FT3

And vitamins if you tested those.

Also, please say when you took your last dose of Levo before the test, it should have been 24 hours before the blood draw.

Did you do your test early morning, no later than 9am, before eating and drink anything but water?

Do you take any supplements or other medication?

Tomatoketchup profile image
Tomatoketchup in reply to SeasideSusie

Thyroglobulin Antibodies 935 IU/MLThyroid peroxiduse antibodies 236 IU/ML

TSH 2.07 MIU/L

Free T3 4.8 pmol/L

Free Thuroxine 16.5 pmol/l

Folate serum 11.3 ug/L

Ferritin 129 ug/L

CRP HS 0.6 Mg/l

B12 is being retested

Vit D 315 but I have halved the protocol now

I also take Fluoxetine and I took the levo before the finger prick test at 7 am as

I didn’t know before hand that I wasn’t meant too, as the dr has never mentioned it 😐

Hashimoto’s has been mentioned to me in another site, but I’m unsure what to do next!? Im waiting for the B12 to come back and then I’ll make a move as what to do next, as I’m so fed up of this fatigue and mouth ulcers and sore tongue.

I’d be grateful for any information or best way to move forward and advice 😊

SeasideSusie profile image
SeasideSusieRemembering in reply to Tomatoketchup

Tomatoketchup

OK, so we have your results but uou haven't posted the reference ranges. We always need those as they vary from lab to lab but I do know Medichecks ranges so I can comment.

TSH 2.07 MIU/L (0.27-4.20)

Free T3 4.8 pmol/L (3.1-6.8) = 46% through range

Free Thuroxine 16.5 pmol/l (12-22) = 45% through range

I also take Fluoxetine and I took the levo before the finger prick test at 7 am as

I didn’t know before hand that I wasn’t meant too, as the dr has never mentioned it

Unlikely that a doctor will tell you not to take your Levo before a test, very few know about this.

Taking antidepressants may reduce absorption and uptake of Levothyroxine a bit and we can compensate for this by increasing Levo to the dose that gives us the results that we need to feel well.

Considering you took your Levo before the test then you have a false high on your FT4 and as it's quite low anyway your actual normal circulating hormone level will be even lower.

You are currently undermedicated. The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.

You need an increase in your dose of Levo, 25mcg now and retest in 6-8 weeks following the advice we always give here:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

*Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, coffee affects TSH so it's possible that other caffeine containing drinks may also affect TSH.

* When taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use Biotin in the assay).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

**

Folate serum 11.3 ug/L (2.9-14.5)

Folate is recommended to be at least half way through range, your level is fine.

Do you take a B Complex or Folate supplement?

**

Ferritin 129 ug/L (13-150)

Folate is recommended to be half way through range and some experts say the optimal ferritin level for thyroid function is between 90-110 ng/ml.

Do you supplement iron?

**

CRP HS 0.6 Mg/l

This is an inflammation marker, yours is nice and low so that's good.

**

B12 is being retested

Do you supplement B12 or a B Complex?

**

Vit D 315 but I have halved the protocol now

I have no idea what the "protocol" suggests but Vit D level over 220nmol/L is considered high and can lead to toxicity.

**

Thyroglobulin Antibodies 935 IU/MLThyroid peroxiduse antibodies 236 IU/ML

As mentioned, your raised antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where the immune system attacks and gradually destroys the thyroid.

Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Tomatoketchup profile image
Tomatoketchup in reply to Tomatoketchup

TSH 2.07Mlu/L (0.27-4.2)Free T3 4.8 pmol/L (3.1-6.8)

Thyroxine 16.5 pmol/L (12-22)

Folate 11.3ug/L (>2.9)

Ferritin 129ug/L (13-150)

CRP 0.6 mg/l (0-5)

No I haven’t taken any Vit B supplements or iron

But I have been taking folic acid 5mg but I stopped a week before doing the bloods

SeasideSusie profile image
SeasideSusieRemembering in reply to Tomatoketchup

Tomatoketchup

I have already addressed your results in my previous reply, I knew the ranges and added them and then responded with comments but I can now add the following as you've answered the questions about supplements.

Your ferritin is very good considering you don't supplement but raised ferritin can be caused by inflammation and Hashi's causes inflammation, therefore your ferritin may be higher than your normal level.

How long have you been taking folic acid? Presumably prescribed for folate deficiency?

You didn't need to stop taking your folic acid, that doesn't affect results, it's Biotin either as a stand alone supplement or in a B Complex that can give false results.

Tomatoketchup profile image
Tomatoketchup in reply to SeasideSusie

I took folic acid for 60 days as that’s how many capsules wereIn the tub, but I’ve started them again now

SeasideSusie profile image
SeasideSusieRemembering in reply to Tomatoketchup

But was it prescribed? If so is your GP monitoring you?

Tomatoketchup profile image
Tomatoketchup in reply to SeasideSusie

No, it was low on a previous blood test and suggested I get my folate up and retested and to check my Vitb12 and d

SeasideSusie profile image
SeasideSusieRemembering in reply to Tomatoketchup

So it's not prescribed.

How low was your level?

Who suggested you take it?

5mg folic acid is meant to be short term to treat Folate deficiency anaemia.

If you had low Folate you would probably have done well enough with a good quality, bioavailable B Complex (keeps all B vitamins balanced) with 400mcg methylfolate. I raised my bottom of range Folate level to top of range in 2.5 months using a good B Complex.

Your Folate level now is excellent at 11.3 with a range of 2.9 - 14.5 and you certainly don't need to take 5mg of folic acid.

SlowDragon profile image
SlowDragonAdministrator

Please add TSH, Ft4 and Ft3 results and ranges

you have high antibodies this confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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

Low vitamin levels affect Thyroid hormone working

As SeasideSusie says....essential to get vitamin D, folate, ferritin and B12 tested at least annually

What vitamin supplements are you currently taking?

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.

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

healthcheckshop.co.uk/store...?

Assuming coeliac 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

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.

poppywyman profile image
poppywyman

Hi, I found giving up gluten helped with my mouth ulcers.

Cogsat123 profile image
Cogsat123

Tomatoketchup

I'm also on 125 ug of Levothyroxine, TSH dropping so GP decreased my meds to 100 ug despite not feeling at all hyperthyroid, felt really tired, gained weight, hypothyroid symptoms. Still trying to shift the weight gain, although now back on 125 ug. Still feeling tired, lethargic... You mention Vit B12 - I think in my case the issue was being on a Proton Pump Inhibitor (Lanzoprazole) for 2 years - unnecessarily as it happens! - it had the effect of reducing absorption of Vit B12 and I think also my thyroid meds leading in my case to itchy skin needing 14 weeks or so of phototherapy and increased hypothyroid symptoms.

Website verywellhealth has lots of very useful information as well as the info on here, which is top notch.

Let us know how you get on! All the best.

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