TG Ab results - told not to worry : One GP... - Thyroid UK

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TG Ab results - told not to worry

sy28 profile image
sy28
21 Replies

One GP recently confirmed I have Hashimotos, another thinks 'it's something else', last week's Endocrinologist mentioned Menopause 3 times, dismissing concerns I had regarding recent test results measuring Thyroglobulin Antibodies at levels of 3000 mui/ml. At least Cortisol levels are being checked in a few weeks as a result of Endo appointment, though he concluded, reading back over a year's record of GP results, he was reading an incomplete picture. It appears I'm starting all over again, being advised I might even be harming my Thyroid by taking Levothyroxine. TSH was 5.1 in February 2017 when I first reported symptoms. Referencing my folded arms and tense body language - who would respond well to having 'Egg!' quoted at them across a Consultant's desk. I missed the bit where I was told twice, 'I'm going to make you well.' I just wish he hadn't mentioned the M word (patient is 65) and I respectfully told him so!

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sy28
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21 Replies
Peanut31 profile image
Peanut31

Looking at your post 3 months ago, are you still on 150 mcg of Levothyroxine?

It is always best to go gluten and dairy free when you have Hastimoto's (I have this) as it helps reduce antibodies, also try and avoid processed foods.

Hashimoto's is an autoimmune condition and often the cause of Hypothyroidism.

My Hashimotos was dignanosed by a private endo, but, refused to put me on Levo to help. Cut a long story short, I got worse and went to my GP, they ordered a full thyroid test and my TSH was 12.2 T4, T3 also out of range, and I felt awful.

My GP put me straight away on Levo and I feel much better, not perfect as not on the correct dosage, but, we are getting there.

Who suggested that Levo will do you more harm than good?

For us to feel normal our Thyroid ranges should be:

TSH 1.0 OR Below

T4 19 or 20

T3 5-5.5

Best Wishes

Peanut31

SeasideSusie profile image
SeasideSusieRemembering in reply toPeanut31

Peanut

Without knowing the reference ranges we can't say what the level of FT4 or FT3 should be number-wise. The range used at my surgery for FT4 is 7-17.

All we can say is that generally a hypo patient feels best when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges.

Peanut31 profile image
Peanut31 in reply toSeasideSusie

Sorry SeasideSusie

I saw the ranges in a previous post about 3 months ago, as they said on Levothyroxine, and positive she had listed them. Apologies if not.

It was the bit about Levothyroxine causing more damage when it’s been confirmed by GP she has Hashimoto’s, that got me. 😡

My Endocrinologist diagnosed me with Hashimoto’s, but, told me that no medication would help, but I went down hill fast. My GP was very cross at the Endocrinologist.

I’m now on Levothyroxine, I’m not perfect, but getting better.

Best wishes

Peanut31

SeasideSusie profile image
SeasideSusieRemembering in reply toPeanut31

Peanut

I honestly wonder if they know anything at all. Maybe they don't realise that each antibody attack destroys a bit more of the thyroid, and Dr Toft says that where antibodies are present then starting Levo can "nip things in the bud".

They are so ignorant and keeping so many people ill :(

Of course, it does help us when members give reference ranges as well as results :)

Peanut31 profile image
Peanut31 in reply toSeasideSusie

Apologies SeasideSusie

I’ve just looked back on the 3 months post and you are correct no ranges on her results.

Best wishes

Peanut31

SlowDragon profile image
SlowDragonAdministrator

Your previous results suggest low FT3. (Need ranges added to be certain)

Have you had bloods retested.

What about vitamin D, folate, ferritin and B12 tests.

Are you on strictly gluten free diet?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test FT3 and FT4, plus vitamins

Handy to retest antibodies periodically when gluten free to see how much they are decreasing

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...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

sy28 profile image
sy28

Thank you all for your thoughts, I'm sorry I didn't include ranges, here are the most recent results I have (16 April, 2018):

Serum free triiodothyronine 4.2mol/L [2.5-5.7]

Serum free T4 20.7pmol/L [9-24]

Serum TSH 0.04miu/L [0.2-4.5

Thyroglobulin autoantibodies 3000iv/mL [0-20]

Serum vitamin B12 level 753ng/L [180.0-910.0]

Serum folate level 8.5ug/L

Serum ferritin level (XE24r) 94ug/L [15.0-200.0]

Vitamin D 42nmol/L

Levothyroxine has been reduced from 150mcgms to 125mcgms to raise TSH from below low reference limit

I received appointment confirmation today for Synacthen test, afterwhich my next appointment with the Endocrinologist is beginning of August.

I was bemused and depressed by some of the consultant's comments and behaviour during my hour's consultation.

If I showed any understanding of Thyroid health, he quoted 'Egg!' at me. Given my suppressed TSH, he thinks I should feel better - results to date are not giving a full picture . I understand his need for a full picture, - however this is doubly frustrating when in the past, GP requested tests have been over-ruled at the lab or by the local NHS governing body.

At the outset, I have not been convinced Levothyroxine alone suits me, neither am I convinced medication containing Lactose is necessarily a good idea.

Meanwhile, I have gone Gluten and Dairy Free. Digestive enzymes have been beneficial. Current supplements = Vit D 3,200IU; Vit K2; Selenium; liquid B12; Folic Acid; Non-acidic, slow release Vit C; Zinc; Chelated Magnesium; l-tyrosine; 5HTP.

I'm grateful for your constructive comments, thank you. Hope the above provides a better summary.

I am willing to have an open mind - maybe I don't have a thyroid issue, but it's difficult to ignore my first TSH, 2017, result : 5.1 and now the presence of antibodies, not to mention continuing symptoms.

SlowDragon profile image
SlowDragonAdministrator in reply tosy28

Vitamin D is still far too low. You might need to increase level of supplements to improve. Better You vitamin D mouth spray is good as avoids poor gut function of Hashimoto's

Folate looks low. Perhaps taking a good quality vitamin B complex with folate in rather than folic acid. This would also improve all B vitamin levels

chriskresser.com/folate-vs-...

Do you have raised TPO antibodies as well?

Lowering Levo will reduce FT3 further.

sy28 profile image
sy28 in reply toSlowDragon

Yes, endo confirmed I do

SlowDragon profile image
SlowDragonAdministrator in reply tosy28

When do you see them again? Are they considering adding small dose of T3?

It's likely you would benefit

sy28 profile image
sy28 in reply toSlowDragon

Thanks for that ... second Endo appointment 9 August, Synacthen test beforehand, in June- do you suspect conversion issue?

SlowDragon profile image
SlowDragonAdministrator in reply tosy28

Definitely gut is affected as you are having to take lots of supplements and are gluten and dairy free. 20% of conversion should happen in gut.

That's why so many of us need small dose of T3

But if this is NHS endo they are presumably reluctant to prescribe T3 due to cost.

sy28 profile image
sy28 in reply toSlowDragon

Consultant wants a fuller picture before prescribing T3, but it's been mentioned. I think it's a good idea if I get private Thyroid blood tests done prior to next Endo appointment.

SlowDragon profile image
SlowDragonAdministrator in reply tosy28

Yes I would. If you can bear it, waiting 8-10 weeks after dose reduction. It seems to take longer to settle with reducing

sy28 profile image
sy28 in reply toSlowDragon

Good to know, I'll wait till July before getting tested. Ties in well with August Endo appointment. Thanks SlowDragon.

sy28 profile image
sy28 in reply toSlowDragon

In today's post: Hospital confirms consultant has requested blood test appointment with specific handling and fast delivery to laboratories for analysis ... private tests will be useful comparison

SlowDragon profile image
SlowDragonAdministrator in reply tosy28

Are they also testing parathyroid levels? That requires fast processing

sy28 profile image
sy28 in reply toSlowDragon

Sorry, I'm not sure, perhaps this is testing for parathyroid levels. Hospital to confirm.

SlowDragon profile image
SlowDragonAdministrator in reply tosy28

If you start taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

sy28 profile image
sy28

Thank you SlowDragon, I've just posted latest NHS test results - I am definitely getting private tests done in a month, ahead of my next Consultant appointment in August. I appreciate your comments.

sy28 profile image
sy28

One GP and now the Consultant has stated he wants TSH higher. When I mentioned I'd heard it was better to have suppressed TSH with Hashimotos, I was told I might be damaging a perfectly healthy Thyroid by taking 150mcgms Levothyroxine, hence the recommendation to reduce dosage to 125mcgms. By way of contradiction, the Consultant confirmed he is looking for evidence before prescribing T3. That I can understand. ... the battle for evidence.

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