"Your thyroid's fine"...what do you think?

[Sleepysparrow]

Hi. I've been told by a GP that my thyroid is fine. I don't think it is. I'd be grateful for your opinions. Like many others here, I'm fed up with Dr.s saying it's my age, the menopause, or there's nothing wrong.

Medichecks results: May 23

Thyroglobulin Antibodies: 423.000 kIU/L (Range: <115)

thyroid Peroxidase Antibodies: 187 k\\IU/L (Range: <34)

TSH 6mIU/L (Range: 0.27 - 4.2)

Free T3 4.6 pmol/L (Range: 3.1 -6.8)

Free Thyroxine 16.5 pmol/L (Range: 12 - 22)

Inflammation - CRP HS 1.16 mg/L (Range <3)

Ferritin 35 ug/L (Range: 30-150)

Folate Serum 21.5 nmol/L (Range: 8.83 - 60.8)

Vitamin B12 Active 124 pmol/L (Range: 37.5 - 188)

Vitamin D 62 nmol/L (Range: 50 - 250)

NHS Blood Test Results: May 23 "Tell patient OK"

Serum TSH 5.27 (Range: 0.35 - 5.50)

Free T4 11.9 pmol/L (Range: 7.0 -17.0)

NHS blood tests - after visiting Dr due to constant aching legs, especially at night

TSH 2.99 mU/L (Range: 0.35 - 5.50

Free T4 9.5 pmol/L (Range: 7.0 - 17.0)

Ferritin 13 (Range 15-300)

Folate 7.2 ug/L (R:>3.0)

Vit B12 261 ng/L (R: 150-900)

Vit D 66 nmol/L

The GP told me not to get fixated on my thyroid, said it was OK. Put me on 3 months of iron tablets, (ferrous fumerate 210 mg tablets) 2 a day and told me to get another blood test in 3 months and a test for celiac disease as that may be the cause of my low iron stores.

Haven't had results of these yet.

Got all usual symptoms of underactive thyroid, have had for 10 years now.

No eyebrows, 3cm gall stone, chronic constipation, brain fog, utter fatigue, low mood.

Mum had underactive thyroid.

Currently not on any meds apart from HRT which I've been on for 4 months in desperation to find some help. I think it has helped my moods/fog a bit. Will keep it doing for a while.

So sorry for all the blurb. Makes me dizzy reading it. Can't cope with much these days.

I have been sent to see an Endo who sent me for tests for sleep apnea.

Thanks so much for all the info on this site. Makes me think I'm not going mad!

[JMN2017]

Hi SleepySparrow

I'm not knowledgable enough to give you reliable advice but I would suggest your B12 is rather too low. For B12 to be effective your Folate level must be reasonable too, so perhaps bear that in mind.

I think it good that your Dr is wanting to check for reasons of low iron levels. I had low iron levels so now take iron regularly. I like to be at least mid-range. Lack of Vit D can cause many similiar symptoms too.

I feel you do need to keep talking with your GP re how you're feeling as there must be something not quite right, eh? I'm sorry to hear you feel so rough.

Hopefully, you'll get some sound advice from the members here, as the day passes. Take care, eh?

[Sleepysparrow in reply to JMN2017]

Thanks so much for taking the trouble to reply. I've now had my iron results after three months of taking prescribed tablets and it's gone up from 13 to 56 (Range: 15 - 300). The results form says 'tell the patient OK.' But I will keep trying to get my iron levels up. I've also had celiac test now and that says 'tell patient OK' but, following advice on this marvellous site, I'm going to trial gluten free for a few months. Meantime, I'll optimize my vitamins as per advice on here. Given up with the GP for now. Thanks again.

[seveneleven]

Good grief, yes you are indeed hypo and absolutely have Hashimoto's with those antibodies - your thyroid is having quite a rough time with your immune system by the looks of it. GP is ignorant and should have diagnosed the Hashi's - you might need to push for antibodies to be tested with NHS because they rarely pay attention to private tests. T4 is fairly low, and T3 not fantastic either. You likely won't get any treatment on the NHS until you have 2 over-range (TSH) tests with them unfortunately. Best chance of that is bagging a 9am (or earlier) test and fasting for it. Where it can get tricky is that TSH levels can fluctuate quite a bit as attacks on your thyroid go up and down. I had a TSH of 4.5 on one test and then 2.9 on another not long after in the same conditions before giving up and going private. So either way, you'll need to be very persistent and argue based on your clear symptoms and bloods showing autoimmunity. Can sometimes be worth asking for a different GP - some are slightly less useless than others or at least willing to hear you out.

[Sleepysparrow in reply to seveneleven]

Thanks so much for your reply. Nice to know I'm not going round the twist! Can't face GP again so, following advice on this great site, I'll optimize my vitamins and try gluten free for 3 months, then dairy free. My iron results show an increase in iron stores but only from 13 up to 56 (Range: 15 -300). The results form said 'tell patient OK', but I'll keep on with the iron myself.

Thanks again.

[SlowDragon Administrator]

yes your high thyroid antibodies and high TSH, low vitamin levels and symptoms confirm autoimmune thyroid disease

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

GP should do coeliac blood test now

Keep eating high levels gluten until test

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.

A trial of strictly gluten free diet is always worth doing

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

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...

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

[Sleepysparrow in reply to SlowDragon]

Thanks so much for taking the time and trouble to send all this information. I have just had the results from my celiac test and serum ferritin (after being on prescribed tablets for 3 months).

At the top of the print out it says "Tell the patient OK."

Results: Serum Ferritin 56 ug/L (Range:15 - 300) (it was 13 so it has gone up a bit)

TTG Antibodies IgA 0.5 U/ml (Range: 0.0 - 7.0) (coeliac test)

I've not idea what the coeliac test results mean but I've been told "OK".

And I've not been given another prescription for iron tablets. I've been told that 'some people just have low iron stores'.

So, with all the info provided on this site, I shall optimise my vitamins and minerals and try gluten free for a few months, then dairy.

I'm quite resigned now to sorting myself out.

Thanks again.

[JMN2017 in reply to Sleepysparrow]

I agree your Ferritin levels have increased but I suggest you get to at least 70. This is the minimum level I needed to be referred re thinning hair. I realise it's not the same but seems to me to be a reasonable level for hair LOL That's the minimum level I try to maintain (assuming GP will request blood test periodically LOL )

Hopefully, with a slightly higher level, you might be feeling just a little bit better Well done, take care