Following on from my last post…..

[Paolatello]

Hi all

So I finally got to speak with my GP regarding the consultant prescribing me a trial of carbimazole. He said the reason (that he also supports) to prescribe me carbimazole is that I am hyperthyroid with indications of it being autoimmune in nature. I’ve had thyroid issues and TPO antibodies sky high for over ten years so I know something is wrong but I’ve never had medication as my levels have never remained wrong for long enough. I’ve always thought I’ve got hashimoto’s though because generally I feel hypo with joint pain, lethargy, low mood, low energy etc but also have bouts of hyper symptoms where my heart races, I get hypoglycaemia, palpitations and disturbed sleep. I’ve also had random panic attacks for no reason on and off over the years when I’m going through what I class as a thyroid flare up. I assumed this was all typical of fluctuating hashimoto’s - however……

My current results are making the doctors want to treat me for hyperthyroidism/Graves’! The results are:

TSH 0.31 (range 0.35-3.5) my previous TSH 3 months ago was undetectable

Free T4 13 (range 10-20)

Free T3 4.5 (range 3.5-6.5)

TRAb weakly positive at 3 (negative being less than 2.9)

My thyroid uptake scan showed increased uptake and activity in the lower left lobe.

Now I’m no expert here, far from it, but my free Ts are low in range - not hyper for sure! And could my uptake scan be a hot nodule? The area of over activity is very specific! Lower left lobe. I’m confused and nervous to start carbimazole and worsen my already difficult situation symptom wise.

[SlowDragon Administrator]

You know more than GP

Your results show you have Hashimoto’s and low Ft4 and Ft3

You need referral to thyroid specialist endocrinologist as Trab is questionable

Essential to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Have you had coeliac blood test done

If not get one before considering trial on strictly gluten free diet

[Paolatello in reply to SlowDragon]

My vitamins are good and have been for over a year now. I’ve got them all to optimal as per your instructions. I’ve had a coeliac test and it’s negative.

Do you mean the TRAb are possibly Graves? Can you have both Graves abs hashimoto’s?

My consultant isn’t thyroid specific, his title is diabetes and endocrine specialist. He believes I need carbimazole.

[SlowDragon Administrator in reply to Paolatello]

Yes you can have Hashimoto’s and Graves at same time.

Treatment is often block ( with Carbimazole) and replace (with levothyroxine)

You need thyroid specialist endocrinologist

Poor gut function with Hashimoto’s and Graves 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

As your coeliac test is negative you can consider immediately trialing strictly gluten free diet

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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

[SlowDragon Administrator in reply to Paolatello]

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

[Paolatello in reply to SlowDragon]

How will they determine if I have Graves as my antibodies are so weakly elevated?

[helvella Administrator Thyroid UK in reply to Paolatello]

Thyrois Stimulating Hormone Receptor antibodies come in two flavours. Stimulating and blocking.

The standard TRab test does not distinguish between them. The ones that were found could all be stimulating (doubtful given your other results), all blocking, or a mix!

A Thyroid Stimulating Immunogloboulin (TSI) test is specific.

You are not hyperthyroid. Full stop. Carbimazole, or other anti-thyroid medicine, is not indicated.

[kittyelen in reply to Paolatello]

My antibodies were weakly positive and they diagnosed underlying graves from this

[greygoose]

You are not hyper. Your TSH is just slightly under-range - if you were hyper, it would be suppressed. And your Frees would be well over-range. And, even if this were the case, carbi is not the right treatment for Hashi's. I would not take it if I were you.

[Paolatello in reply to greygoose]

I totally agree. I just don’t know what to do as I’ve fought so hard for ten years for the doctors to acknowledge that I’ve got thyroid disease and now they finally want to help me but they’re medicating me for the wrong illness in my opinion!

[Buddy195 Administrator in reply to Paolatello]

Like you I was told I had Graves, but I followed forum advice to test & retest privately. Although I had many ‘hyper’ signs (tremor, palpitations, anxiety plus confirmed thyroid eye disease) established forum members were correct, I’m definitely hypo and antibodies confirm Hashimotos.

[Paolatello in reply to Buddy195]

Thank you! I also anxiety sometimes randomly when the thyroid flares up. Sometimes I also get very obvious thyroid swelling. Who did you see to get treated? Do you feel better now?

[Buddy195 Administrator in reply to Paolatello]

I check levels privately using Medichecks & post results on forum. I show or email these to my private endo. I also see TED specialist ophthalmologist as needed. I feel so much better on combination T3/T4 treatment (especially my eyes; swelling has reduced massively).

[Paolatello in reply to Buddy195]

Can I ask who you see privately ?

[Buddy195 Administrator in reply to Paolatello]

Will send you pm

[SlowDragon Administrator in reply to Paolatello]

Anxiety is common hypothyroid symptom

Gluten free diet can significantly reduce anxiety too

[Paolatello in reply to SlowDragon]

Thank you, that’s good to know.

[greygoose in reply to Paolatello]

It often happens because they just don't know the difference between Graves and Hashi's.

[Buddy195 Administrator]

Would 100% agree that GF is a great thing to try…. I’d never eat it again!

[NIKEGIRL]

Hi. You are really up against it but u have received good advice here. I’m a Graves patient and my T3 was 48.7 at its worst range 2.0-6.0 and my T4 was over 100 at its worst range 10-24. My TRAB was >100 anything >0.8 was positive and my TRAB was 462 anything >10 was positive. I haven’t got my TSI. I only say this to illustrate a clear case of Graves. I don’t think Carbimazole is what you need. I would do the private blood tests and seek the answers yourself. It’s not what U should have to do but it’s what I would do myself. Take some power back and get the answers u seek. I always think about my gut. What is your gut instinct. Gut and brain are connected. Strangely.