Advice please : In May 2015 I had Graves Disease... - Thyroid UK

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Advice please

Ianswife profile image
32 Replies

In May 2015 I had Graves Disease and was on carbimazole for 15 months . Luckily everything calmed down and I was absolutely fine for ages . I went for a blood test on the 23rd as for the last 6 weeks I have had low mood , hair loss and feeling extremely tired .

Results are

T4 12.6 (9-24 )

TSH 3.6 (0.2 _ 5.0 )

Serum ferritin 17 ( 13.0 _ 150.0 )

Serum cholesterol 5.5 ( 0.0 _4.0 )

LDL cholesterol 2.94 ( 0.0 _ 2.0 )

Should I be concerned and any help appreciated .

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Ianswife profile image
Ianswife
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32 Replies
greygoose profile image
greygoose

You are now hypo.

Are you sure that you actually had Grave's? Did they test your TRAB or TSI? Or any other antibodies?

Ianswife profile image
Ianswife in reply to greygoose

Hi ,

Just gone back on my patient access and in may 2015 my TPO thyroid ABS were

3295 IU/ml range 0_59 . My TSH was 0.001 and my T4 was 86 ( 9_24 ) . I did also have my TRAB tested at that time but got a letter with that result confirming Graves Disease .

Ianswife profile image
Ianswife in reply to Ianswife

Sorry I have read your message wrong , please excuse me as a bit brain foggy at the moment . Currently not under my endocrinologist as I got discharged last September . No the go only did a basic thyroid panel which both came back normal . I haven't felt right for 6 weeks . Sorry for misreading your initial message . Thank you for your help . Do you think I ask for a referral back to endocrinology ?

Ianswife profile image
Ianswife in reply to Ianswife

Meant GP not go !!!!!

greygoose profile image
greygoose in reply to Ianswife

No, you understood correctly, and you answered. :) So, it looks as if you have both Hashi's and Grave's, because those Hashi's antibodies are very high. And, it could be that the Hashi's has now taken control. But, I don't really know. You should ask for a referral back to endocrinology, yes. Your cholesterol is high, so your FT3 is probably low. :)

Ianswife profile image
Ianswife in reply to greygoose

Thank you so much for all your help , I will pay for antibodies to be tested privately as my GP is beyond useless . They just said all was fine and perfectly normal . Are medichecks any good . Sorry to ask so many questions . Thank you once again . I am usually positive a little bit hyperactive and bubbly but recently I could cry at the drop of a hat , periods have gone stupid heavy , hair loss and I have absolutely nothing to feel sad about . Trouble sleeping and just feel absolutely shattered . Hubby said go to the Dr as he said he can tell the difference in me .

Thank you

greygoose profile image
greygoose in reply to Ianswife

Why do you want your antibodies retested? You know they're both positive. But, have you had your nutrients tested? Vit D, vit B12, folate, ferritin? If they're low, they could be exacerbating your symptoms.

Ianswife profile image
Ianswife in reply to greygoose

Because I have not had antibodies tested since 2015 . All they tested on the 23rd of July was TSH and T4 .

greygoose profile image
greygoose in reply to Ianswife

Yes, but once you have a positive result, it's not going to become negative. Even if the antibodies are lower than before, you'll still have the diseases, they don't go away.

ling profile image
ling in reply to Ianswife

The TSH and FT4 may be normal but your pretty bad symptoms are screaming something else.

Yes, you need to see an endo. With those symptoms, I think it's a matter of time, whatever's ailing you, will show up in your next blood tests.

Have those antibodies tested. At least you'll know where you're headed.

Ianswife profile image
Ianswife in reply to ling

Thank you and I will pay privately . Thank you for your help . Appreciated greatly .Have a lovely day .

ling profile image
ling in reply to Ianswife

You take care.

With best wishes.

Ianswife profile image
Ianswife in reply to ling

Thank you . You too

greygoose profile image
greygoose in reply to ling

There's nothing normal about a TSH of 3.6. You're hypo when your TSH reaches 3.

Ianswife profile image
Ianswife in reply to greygoose

I have just been on my patient access again

Total white cell count abnormal 3.9 (4.0 _ 11 )

Serum folate 7 (3.9_ 20.0 )

B12 1025 (197_1999)

Serum ferritin 17 ( 13.0 _ 150 ) .

Don't know if that's useful but I thought I would put them on , taken 23 rd July .

greygoose profile image
greygoose in reply to Ianswife

Your ferritin is very, very low. That will be causing symptoms. What did your doctor say about that result? He should be doing a full iron panel on the basis of that.

Your folate could be higher, too, but your B12 isn't too bad. Ever had vit D tested? That needs to be optimal, too. :)

Ianswife profile image
Ianswife in reply to greygoose

Ha ha GP just said everything is normal . I have zero faith in them and think most of them are rubbish . I will pay medichecks to do a throid antibody test and then I will contact my endocrinologist . I will probably get myself in trouble but I can only try.

Ianswife profile image
Ianswife in reply to Ianswife

They did test but D but no results on my patient access so who knows .

Ianswife profile image
Ianswife in reply to Ianswife

Sorry vit D !

Ianswife profile image
Ianswife in reply to Ianswife

Meant thyroid , crickey my brain isn't working today . You are extremely helpful and thanks again .

greygoose profile image
greygoose in reply to Ianswife

You're welcome. :) Let me know how you get on.

Ianswife profile image
Ianswife in reply to greygoose

Will do thank you .

ling profile image
ling

Were any antibodies tested? TRAb, TPO, TG ?

You are not on any medication?

Ianswife profile image
Ianswife in reply to ling

I have had TPO done in 2015 and TRAB .

TPO thyroid ABS were 3295iu/ml ( 0_ 59 ) .

ling profile image
ling in reply to Ianswife

You should have your antibodies tested. It would confirm if you are headed into Hashimoto's.

And if you have TRAb tested as well, you'll at least know if you are still at risk for Graves. It is possible to have both Graves and Hashimoto’s.

I assume you are currently not on any medication.

Ianswife profile image
Ianswife in reply to ling

No medication at the moment . Thank you for your help . Appreciated greatly

Ianswife profile image
Ianswife in reply to ling

On the 23 rd July the GP just did a basic thyroid panel . I was just a bit alarmed as my T4 is going down and my TSH has never been so high .

ling profile image
ling in reply to Ianswife

Yes, it bears looking into. If you now have Hashimoto's, you need to be treated for it to feel better.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Your TPO antibodies were extremely high

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist

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

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

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

Medichecks currently has offer on at £79 instead of £99

£25 extra for private blood draw

Your ferritin is EXTREMELY low. See GP for full iron panel testing for Anaemia

GP could/should test vitamin D, folate and B12

High cholesterol levels linked to being hypothyroid, these will drop as hypothyroidism is treated

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

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

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

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...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

healthcentral.com/article/t...

Ianswife profile image
Ianswife in reply to SlowDragon

Thank you for all that helpful info and I have had really bad gut issues as in really gassy , burping all the time , has been going on for at least 6 months ,so thanks for that .

SlowDragon profile image
SlowDragonAdministrator in reply to Ianswife

Don't expect GP to be aware at all of gluten intolerance link

Likely to poo-poo it

Non Coeliac Gluten sensitivity 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

todaysdietitian.com/newarch...

Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”

Ianswife profile image
Ianswife

Don't make me laugh , according to GP my results are fine . He just looked at me like I was barking mad when I said how I was feeling . Thank you again

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