New member in need of some advice : Hi 👋 I... - Thyroid UK

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New member in need of some advice

TDL131 profile image
20 Replies

Hi 👋 I developed a goitre about 10 years ago (in my 30's) scanned fairly regularly and reported as multi nodular and GP monitoring/ignoring

Recently feeling really tired, sluggish bowels, nails are all ridged and generally feel lousy.

Bloods at GP attached, advised to just monitor but really don't feel right and weight gain is really depressing me, I exercise 5 x 30mins per week and regular long hikes and just seems to be getting bigger.

Any advice welcome.

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TDL131 profile image
TDL131
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20 Replies
greygoose profile image
greygoose

Hi TDL131, welcome to the forum. :)

FT4: 14.9 pmol/l (Range 11.5 - 22.7) 30.36%

Not surprised you don't feel well, your FT4 is very low - should be at least 50% through the range.

What time of day was the blood draw for this test? Because your TSH is low compared to your FT4, which makes me think it was probably done early afternoon? TSH is highest early morning - before 9 am - and as the TSH is all doctors tend to look at, we need it as high as possible.

A multi-nodular goitre sounds like Autoimmune Thyroiditis. Have you had TPO and Tg antibodies tested? If not, that's the next thing that needs doing.

And also stop all that exercise! It is not going to make you lose the weight and will probably make you put more on by making you more hypo. Just gentle walking until you get all this sorted. :)

TDL131 profile image
TDL131 in reply togreygoose

Thanks for the reply, 8am bloods. I have a repeat appointment so will ask for the bloods you mentioned.

greygoose profile image
greygoose in reply toTDL131

You're welcome. :)

J972 profile image
J972 in reply toTDL131

Are you taking any supplements containing biotin by any chance? Biotin in certain doses can affect blood test results.

TDL131 profile image
TDL131 in reply toJ972

No, just on the contraceptive pill, no supplements, no other meds.

TDL131 profile image
TDL131 in reply togreygoose

Have a GP appointment today, just looked back on my bloods so I am prepared and noticed I have had TPO and tissue transglutaminase they are both positive. The results came in a week after the ones I first posted.

greygoose profile image
greygoose in reply toTDL131

They are the antibodies for Hashi's and Coeliac Disease. If they are both positive, then you have them both. There is nothing you can do about the Hashi's, but for the CD you need to be gluten-free.

TDL131 profile image
TDL131 in reply togreygoose

GP was unhelpful and said the gluten one meant I don't have an allergy / intolerance - said some positive results mean you don't have it

greygoose profile image
greygoose in reply toTDL131

Sounds like an idiot to me. Positive always means you do have it, but it depends on the definition of 'positive'. For example with TPO antibodies. They are positive if over-range. So, over-range TPO antibodies mean you have Hashi's.

Not sure what is positive and what is negative with tissue transglutaminase because I've never had it tested. Perhaps giving the exact numbers would help. :)

TDL131 profile image
TDL131 in reply togreygoose

There's no range on the result. He was so unhelpful. Said my bloods had been worse....cheers for that.

Blood result
greygoose profile image
greygoose in reply toTDL131

Well, that's really helpful too - not. But, if they say it's positive you've got to believe them, as they did the test. And, positive means you have it, whatever you dopey doctor said. Best to at least try a gluten-free diet, it could make all the difference to how you feel. Makes you wonder how any of their patients survive. More by luck that judgement, I would guess.

helvella profile image
helvellaAdministrator in reply toTDL131

Your local pathology lab might publish something similar to this:

Tissue Transglutaminase Antibody (TTG)

Description

IgA anti-tissue transglutaminase antibodies are now used as the preferred test for screening of coeliac disease and dermatitis herpetiformis, being highly (>90%) sensitive and specific. All positive samples are then tested for IgA anti-endomysial antibodies which are even more specific but though the test is technically more demanding and time consuming to perform. There is a good correlation between anti-TTg antibody and disease activity. Relapse or poor compliance with a gluten free diet is often associated with return of antibody positivity.The widespread use of these tests has led to the realisation that coeliac disease is common in all age groups even the elderly and presentation can be varied. An immune response to tissue transglutaminase or its products is the cause of coeliac disease. Most untreated coeliacs will have both IgA anti-tTg and endomyial antibodies. IgA anti-tTg tends to appear before anti-endomysial (sometimes before overt symptoms). On a gluten free diet IgA anti-tTg usually disappears after IgA anti-endomysial. There area few situations which lead to IgA anti-tTg positivity in the absence of coeliac disease, most commonly this is in chronic liver disease where total IgA levels are raised.

Note that coeliac disease is is often associated with IgA deficiency, a common immundeficiency found in around 1in 500 of our population. IgA levels are estimated in all patients with suspected coeliac disease. IgA deficient individuals with suspected coeliac disease are tested for IgG anti-tTg and IgG anti-endomysial antibodies. The test for IgA anti-TTg will usually detect IgA deficiency and indicate the need for measurement of IgG antibodies. Positive tTG and Endomysial are supportive of a diagnosis of Coeliac disease. A jejunal biopsy may be performed.

Indication

Highly sensitive and specific test for coeliac disease or dermatitis hepetiformis.

Interpretation

Positive IgA anti-tTg is highly suggestive of coeliac disease. When IgA anti-endomysial antibody is also present, a diagnosis of coeliac disease is almost certain. A limited number of patients are positive for IgA anti-tTg but not IgA anti-endomysial Occasionally a positive IgA anti-tTg test can precede clinical symptoms. Chronic liver disease particularly where total IgA is raised can give positive IgA tTg (but seldom IgA anti-endomysial) in the absence of coeliac disease. Since this is an IgA assay, IgA deficient patients should have IgG anti-tTg and/or IgG anti-endomysial assay performed. Coeliac disease is more common in IgA deficiency.

southtees.nhs.uk/services/p...

Finding the local version might make it even more difficult for your GP to reject it!

helvella profile image
helvellaAdministrator in reply toTDL131

You might have problems getting doctors to accept the FT4 result without them turning to the TSH and denying your FT4 is low!

0.25 is surprisingly low for someone who has quite a low FT4. But we do see this happen and we also see the struggles some have in getting their doctors to understand properly.

TDL131 profile image
TDL131 in reply tohelvella

Yes, just had a very unhelpful conversation, he's speaking with his colleagues and will ring me back but may refer to endo which is what I need

TDL131 profile image
TDL131 in reply toTDL131

So colleague rang me back, now booked in for face to face review T3 ECG and bone scan. Although notes say low TSH consider hyperthyroidism as T4 normal

TDL131 profile image
TDL131 in reply toTDL131

Thank you for all the replies today, felt better speaking to GP and have contact details for private endo so may go there once all results in.

SlowDragon profile image
SlowDragonAmbassador

just testing TSH and Ft4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Come back with new post once you get results

TDL131 profile image
TDL131 in reply toSlowDragon

Thanks for the reply, will look at all the information you've added 👍

Helene- profile image
Helene-

hi, so sorry to hear that. I don’t know about your dosage and blood tests, but concerning your goitre and nodules, did you have an operation to remove them? I hope yes. My daughter, when she was 15 had a goitre and one big nodule. Operation, one love removal. Usually operation is the first immediate step. And to find the right dosage of Levothyroxine is the seccond step.

For your weight, I’m sorry about that as this is hard psychologically, you exercise, this is good, but not enough, diet is way more important. Diet is the most important. Exercise will just tone your body and maintain you in good health. But to loose weight, you have to eat healthy, and in reasonable proportions. Forget sauces, sugar of every kind, snacking. Try intermittent fasting, it works great, accelerate your metabolism, and keep you in good health on the long term. I do it since years, and I will do it for life, so good it is.

Weight gain is not always related to thyroid. It can be related to many other conditions, or no conditions at all, you can simply be insulin resistant, and this will not make you burn the calories. And if it is the case, intermittent fasting will solve your problem, believe me, I did it and will do it for the rest of my life. I love it, and I eat good, I am never hungry, I just eat in specific hours, from 11:00 to 18:00, that’s all. Now that I’m stable, sometimes on the WE, I eat more, or I eat later if I go to the restaurant. But I keep eating healthy at the restaurant. But this is only when you feel really stable with ideal weight. In the beginning you have to try to be strict. You body will thank you:-)

Try this. You have on one side your thyroid problems, but if on the other side you can reduce the weight, it will make you feel so much better. Because it might be not related at all. You know there is no medecine for that, only diet, new habits, but believe me it’s great to do it, it is like a little gift you do to yourself.

I started in the beginning of perimenopause dieting, which means for me eating healthy, not counting calories, I hate that stress. My body was changing and I noticed I was gaining weight. I started intermittent fasting, I was always putting the food I had to eat in one single plate. (I still do) Not more. Nice good stuff. Paleo style. Grilled meat/fish and vegetables. But you can be vegetarian if you prefer, no matter. No sugar, no crab, no processed food. No sodas, only water and tea. I was eating Mediterranean, with olive oil, squeezing lemon everywhere (lemon is effective!). Well, I became another woman. I am 59, skinny, feeling good. I do a little exercise (not hard) at home, I do yoga, I dance, I cycle (I use my bike as transport as much as I can). I don’t do hard sport,

If you don’t have much time to cook, do like me: I take one day per week, or one evening per week, to cook many meals, I froze them or just put them in the refrigerator. I just have to reheat them gently at the oven to eat quickly after work. I bring one of my meal for lunch. no more sandwich, mayonnaise and all the crab. only good and healthy stuff.

Why don’t you try this too?

I wish you the best. Hope you will feel better. The endocrinologist will help you for your thyroid. But for the weight, it is a real change that you have to operate and it is so worth it, I know you can do it too:-) after one week you feel already so relieved, feeling better, and when you will weight yourself, you will have motivation!!!! Because this works for real.

TDL131 profile image
TDL131 in reply toHelene-

Appreciate the message. Not had any surgery, just monitoring and felt well so didn't question it. I eat a really healthy diet, don't fast but stear clear of processed foods, eat fish and small amounts of white meat, no red meat, eat loads of veg and fruit, but try to limit sugary fruits.

I will see GP again and if no joy will look for a private endo.

I do exercise, but as a family we are planning the 3 peaks challenge so need to keep fitness up for now and then will review this after.

I may look into intermittent fasting, thanks 👍

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