Thyroid antibodies test

[Briggsi]

My daughter had a thyroid antibodies test in May which was quite high. The hospital referred her back to our GP to be monitored for underactive thyroid. I have seen some posts that say antibodies test is a sign of Hashimoto's or Graves disease so I am just looking for some advice and guidance as I am unsure if I have misunderstood.

[J972]

Hi, my daughter (17 years old) tested positive for antibodies (TPO) in the summer - approximately 200 - and her GP started her on Levothyroxine. Admittedly this was after an appointment where both myself and her dad attended but we were expecting a ‘wait and watch’ approach. But since my daughter was showing symptoms, coupled with the elevated antibodies, the GP took the decision to commence treatment. GPs don’t tend to use the ‘Hashimoto’s’ tag but, yes, the presence of antibodies confirms that diagnosis. That was her one and only thyroid test.

My daughter was started on just 25mcg but requested a dose increase within a couple of weeks to 50mcg, which was granted. Her levels will be tested later this month and I am fully expecting a dose increase.

She’s definitely less lethargic and her brain fog has improved to such an extent that her A level grade predictions have improved.

How is your daughter feeling? How old is she? Are you able to share her results?

[Briggsi in reply to J972]

My daughter is currently 17. Started with lots of symptoms nearly a year ago. Her antibodies (TPO) result in May was 257 and we have been told to just manage the symptoms. She currently has 25 different symptoms and everyday is a fight to get her up, moving. She always feels loads better in an evening.

[J972 in reply to Briggsi]

I’m sorry that she’s struggling, that must be really difficult.

Do you have her test results? Has she had vitamins D & B12, ferritin and folic acid tested recently?

[Briggsi in reply to J972]

I need to get the results from our current GP. Back in February we were told by a previous GP that she had Overactive Thyroid as her TSH was 0.08 T3 I can't remember and T4 was 24. We were referred to paediatrics as she was 16. Waited 3 months for urgent appointment where consultant told us we were wrong. She said her symptoms were underactive yet she has lots of symptoms that covers under, over, hashimotos and Graves disease. She ordered more bloods with the antibodies. Tsh went up to 1.5 we think, T3 can't remember and T4 went down to 16 I think but TPO was 257. Consultant phoned me back that night and said she was referring back to GP to be monitored for underactive thyroid. Told nothing can do about symptom. GP said test every 6 months this has been a struggle. Finally made GP do it a few weeks early but they only did TSH and refused to do anything else. Bloods taken at 4.30pm and her tsh was 2.2. We are in a battle when I cried on a doctor yesterday she just offered us support I.e. counselling. I have asked for a 2nd opinion. Vitamin results were said to be normal.

[greygoose in reply to Briggsi]

a previous GP that she had Overactive Thyroid as her TSH was 0.08 T3

This is what happens with Hashi's - aka Autoimmune Thyroiditis - it swings between hypo and false 'hyper'. But the low TSH and over-range FT4/3 do not mean she is hyper.

With Hashi's the immune system slowly destroys the thyroid, mistaking it for the enemy. During an attack, the dying cells deposite their stock of hormone - T4 and T3 - into the blood, cause levels to rise (but not as high as they would with Graves') and the TSH to fall. But these levels are only temporary. As the excess hormone is used up/excreted she will slowly return to being hypo. And after each attack, where more and more of the thyroid is destroyed, she will become more and more hypo.

The antibodies come along after the attack to clean up the mess left in the blood - i.e. traces of TPO and Tg in the blood where they shouldn't be.

She said her symptoms were underactive yet she has lots of symptoms that covers under, over, hashimotos and Graves disease.

There is no rigid divide between hypo (underactive) and hyper (over-active) symptoms. A lot of them can be due to either hypo or hyper. And Hashi's and Graves' do not have specific symptoms, just symptoms of over/under-active thyroid. You cannot always tell which you are by symptoms alone, so need blood tests to back them up.

they only did TSH

This is usual, I'm afraid. They are taught in med school that the TSH tells them 'all they need to know'. We, the patients, know that that is rubbish, of course. But doctors do not know as much about thyroid as most of us. They do not understand the importance of the FT4 and FT3 tests. So, probably wouldn't react to them even if they did test them, they would just look at the TSH.

Vitamin results were said to be normal.

Yes, well, that's just their opinion! Unfortunately, doctors know lest about nutrients than they do thyroid. They just don't learn about them in med school. So, anything that is even vaguely within the range is said to be 'normal'. They do not understand the different between optimal and in-range! That is why it is vital to get print-outs of blood test results. You need to know exactly what was tested and exactly what the results were. And it is your legal right to have a print-out, they cannot refuse. And, if you post the results and ranges on here, we will help you understand them.

[Briggsi in reply to greygoose]

Thank you so much. I am going to get onto this on Monday.

[greygoose in reply to Briggsi]

You're welcome.

[Briggsi in reply to greygoose]

Everyone who has responded has certainly made both myself and my daughter feel like we aren't making it up. Doctors telling us to just manage makes us question whether the symptoms are imagined or even if we are not resilient. Now I am proud of my daughter because she is resilient. She has meltdowns but still goes to college, works part time and passed all of her GCSEs through this. Today was a tough day she fought through and her symptoms always seem better at night time and that's what I couldn't understand. So thank you 😊 I will post again when I have more information.

[greygoose in reply to Briggsi]

her symptoms always seem better at night time and that's what I couldn't understand.

That sounds like adrenal fatigue - which wouldn't be surprising. Make sure she gets plenty of vit C, and adequate salt in her diet. Plenty of rest and a high protein breakfast as soon as she gets up in the morning.

When thyroid hormone levels are low, the adrenals take up the slack by producing more cortisol. But they cannot continue doing that forever.

Cortisol should be highest first thing in the morning, to get you out of bed and started on your day. But, if adrenals are struggling, the amount of cortisol they can make in the morning isn't sufficient, and they struggle all day trying to make their daily quota, finally managing it in the evening, when cortisol should be at its lowest so that you can sleep. That's why mornings are difficult, but symptoms appear to improve later in the day.

You could ask her doctor to do an early morning serum cortisol test, but doctors don't believe in Adrenal Fatigue, so he wouldn't know what to do about the results if they were low. If they were very low, he could send her for a test to see if she has Addisson's but she probably hasn't got that. But the first step is an early morning serum cortisol test, and take it from there. Doctors know less about adrenals than they do about thyroid!

[Briggsi in reply to greygoose]

Oh ok. I will look into that too. Thanks 😊

[greygoose in reply to Briggsi]

You're welcome.

[Georgecat in reply to greygoose]

Greygoose,

Are there any books out there that explains all your advice in layman’s terms?

If not would you consider writing one.?

You are a godsend indeed.

[J972 in reply to greygoose]

My thoughts exactly greygoose

[J972 in reply to Briggsi]

Greygoose has offered some excellent advice regarding testing for a possible adrenal issue. An additional route is doing a private cortisol test using saliva samples (considered more efficacious than blood). These two companies offer such tests:

gdx.net/products/adrenocort...

regeneruslabs.com/products/...

Anecdotally, the Regenerus one seems more popular amongst forum users probably because the results are sent back to you, rather than needing a nominated healthcare professional.

All the very best 🙌🏼

[J972 in reply to Briggsi]

You might have better luck with a different GP. Is that a possibility?

[Briggsi in reply to J972]

We are currently on our third GP since February. First one I moved because we moved house, 2nd one I wasn't happy because they refused to see my daughter and said she probably just had a virus. Went to a walk in where they suggested she had thyroid cancer. Bloods came back negative. Currently on 3rd GP who said can't do anything other than refer for 24 hr ECG . Manage symptoms we will review in a year. I have now asked how I get a 2nd opinion.

[J972 in reply to Briggsi]

OK. Good luck, I really hope you get somewhere soon with this 🙌🏼

[Briggsi in reply to J972]

Thank you. I will post once I have previous blood results and I am going to order private ones too. You have all been very helpful 🙂

[WaystarRoyco in reply to Briggsi]

“they refused to see my daughter and said she probably just had a virus”

I was fobbed off by GPs with bollocks like this for more than a decade. I’m so glad you’re onto it.

[Briggsi in reply to WaystarRoyco]

I am on it and thanks to everyone here they may not now what is going to hit them. Starting to question my own treatment now as I was diagnosed with underactive after having my daughter in 2007

[Fruitandnutcase in reply to Briggsi]

How do they expect you to *manage the symptoms* and is she having treatment of any sort while she is *managing her symptoms*?

[Buddy195 Administrator]

Welcome to the forum Briggsi,

Regarding antibodies:

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

In the first instance, I would ask your GP for copies of your daughter’s thyroid blood tests (TSH/ FT3/ FT4 plus any antibody tests) and share with us, showing ranges too (as these can vary between laboratories). Key thyroid vitamins are ferritin, folate, B12 and Vit D, so it’s worth asking for these to be tested (if they haven’t been tested already).

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your daughter’s thyroid health:

thyroiduk.org/help-and-supp...

Keep posting if you need further advice or support. We are a very friendly group! 🦋

[Briggsi in reply to Buddy195]

Thank you. You was very helpful earlier.

[Gemmab1982 in reply to Briggsi]

Hi just a quick mention that when ur daughter has a blood test make sure it’s before 9am fasting no food or drink after 12pm night before and she doesn’t take thyroid meds for 24hrs taking it after blood test, also no biotin a week before test too if they are in any supplements, doing this will give accurate readings xx

[Buddy195 Administrator]

It’s also worth sharing your daughter’s symptoms with us. Interestingly, many symptoms of both an underactive and overactive thyroid overlap

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

[Briggsi in reply to Buddy195]

Her symptoms are1. Migraines - even though taking pizotifen still gets odd migraines here and there

2. Swollen neck with lumps both sides of neck and at front - feels like pressure is pressing against the lumps sometimes.

3. Lump at bottom of neck near shoulder - my right side

4. Small swelling/lump under my right armpit

5. Difficulty swallowing - having to regurgitate some bits of food to allow some other bits to go down- especially with drinks

6. Difficulty breathing at some moments - cant walk from kitchen to my bedroom with being breathless -

7. Heart palpitations - potentially acid reflux

8. Chest pain (Lanzoprazol for acid reflux)

9. Tender breasts

10. Tremoring hands and fingers some more intense than others but mostly constant

11. Stomach pains and pelvic cramps/pain

12. Very irregular periods with more blood than normal even when taking desogestrol, which stopped them completely for a while until being under investigation for thyroid condition

13. Mood swings

14. Severe fatigue - struggles to initially get to sleep and then hard to wake up in morning even when setting multiple alarms on different clocks (Alexa and a bell alarm clock) and feels like i've not even slept at all

15. Feet pain

16. Knee pain - mostly bending down and picking up

17. Inconsistent poop texture

18. Gaining weight

19. Increased appetite - but not constant

20. Sensitive to cold

21. Experiencing hot flushes (lasted 24 hours yesterday), however, temperature between 35.4 and 36.7 and sweating under arms when my body feels cold except my face which is red hot.

22. Cough but not cold related with a small sore throat (only when coughing)

23. Nosebleeds - had since 18 months old but had nose cauterised twice, this year, and still get them but did lessen after it but now seem to be happening more often

24. Sweating - pungent smell, majority of times, and more prominent during night and smells in morning - pillow mainly soaks the sweat.

[Britpol in reply to Briggsi]

Difficulty in swallowing and feeling breathless is a serious matter; mine ended up in total thyroidectomy and although I now struggle with low calcium levels that cause muscle cramps, I am getting there with supplements. I am more alert, have much improved digestion, sweat a lot less, have very few hot flushed and sleep much better. She ought to be referred to an endocrinologist or ent surgeon who could arrange a swallowing test. You can refer yourself privately and pay; really worth doing that, as you are likely to get a much better advice and treatment. Do research consultants’ background beforehand and make a choice, do ask around. Not much can be achieved on the NHS I’m afraid, due to severe underfunding/destruction by successive governments. All the very best .

[Briggsi in reply to Britpol]

Thank you we just get told they can't feel anything in her neck.

[Britpol in reply to Briggsi]

Please insist on a swallowing test, because her thyroid lumps must have grown inwards access with me. My ultrasound did not show much but the swallowing test did . If food gets stuck for a long time, there is a danger of infection. My surgery showed that the thyroid was 3 times larger than what tge ultrasound have shown

[Briggsi in reply to Britpol]

Thank you 😊

[Litatamon in reply to Briggsi]

Two doctors - a GP and a surgeon's assistant - could not feel anything in my neck. My surgeon could, so don't make that an X sort of speak until it is one.I had a total thyroidectomy due to swallowing and breathing issues, and despite good thyroid labs beforehand out came a diseased thyroid, that was twice the size as a regular thyroid. I knew I had multinodular goitre before the operation but had no clue it was diseased.

My initial endocrinologist did this physical test. Hands straight up over head. Lower the chin to the chest while you keep them up and try to speak. As soon as I started to lower my chin down into that position I could not breathe and my voice, that could barely come out,b sounded like the devil. She did not tell me why she was doing the test so the results came as a shock and I stupidly forgot for quite a few seconds that I was free to bring my chin back up.

All the best to you figuring it all out.

------

Also some of her symptoms could be b12 deficiency/pernicious anemia. I had over 32 symptoms where some went on for years, until the deficiency was found. And get the actual number, do not rely on 'normal' and done.

[Briggsi in reply to Litatamon]

Thanks just tried that with my daughter and she is struggling a little too lol.

[Litatamon in reply to Briggsi]

I can do the test and sing now in that position. There should be no issue when doing it. Not the most comfortable position but one should feel nada.

Edited my original post and left some b12 information, just to cross it off as a possible issue at hand.

[Briggsi in reply to Litatamon]

Thank you mu daughter did the test could hardly breathe or speak. I did it too and I was fine. Going to use that with our GP because my daughter is a singer same as me. Thanks for the B12 info I am planning on getting a private blood test done.

[Gemmab1982 in reply to Briggsi]

I’m so sorry to hear how many symptoms your daughter has, I had some of them and the struggle so real, I read a book called hashimotes root causes by Izabella Wentz and it was extremely helpful, some of my symptoms have gone and now I’m now on way to remission from this book, so it could be worth checking out,

Has your daughter changed her diet at all tired going gluten free, dairy free, sugar and soy free go see if any these help her symptoms? Not all at one like i did but try one at a time? Xx

[Buddy195 Administrator]

Definitely push to test key thyroid vitamins in addition to TSH/ FT3/ FT4 and share with us. I’m not surprised you are worried about your daughter; this is a long list of symptoms to be struggling with. As the link I posted above shows, many of these symptoms may be linked to her thyroid health.

[Briggsi in reply to Buddy195]

Yes that is what worries me. I asked our GP who had that list printed out to determine which ones may be linked and which ones aren't and she refused.

[SlowDragon Administrator]

Back in February we were told by a previous GP that she had Overactive Thyroid as her TSH was 0.08 T3 I can't remember and T4 was 24.

This is typical of autoimmune HYPOthyroid disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid type results and symptoms as cells in thyroid breakdown releasing excess thyroid hormones…it is NOT the same as autoimmune hyperthyroid disease (Graves’ disease)

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

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

if your daughter is under 18 Blue Horizon will test minors

Blue Horizon Thyroid Premium Gold includes 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

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

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

[Briggsi in reply to SlowDragon]

Lovely thank you for all of this information. 😊

[waveylines]

Just wanted to add my sympathy to all that your daughter is going through. You would think they would be more on it.....especially as she is a child!! But tbh they just don't get it. Even the Endocrinologists commonly have no more knowledge than GPs - not all but most. Most Endocrinologists specialise in Diabetes. Great advice from others. She should be treated but am afraid treatment is in dire straights here in the UK which is why this forum is soooo active. GPs can request a full thyroid panel but often the NHS labs won't do it! My GP told me recently they are not allowed to request anything more than TSH. Many patients have to take matters into their own hands to regain their health, including ordering their own thyroid tests. It's a dreadful state of affairs.

My advice is to continue to be very proactive. You may find a GP in your practise who is more aware, more willing than others so worth trying different ones. You may have to go private but please check out very carefully if they do actually specialise in Hashi and don't just go on the TSH. It's becoming more of a tricky route now too.

Look at Thyroid uks list of books..... Definately need to read up and enskill yourself. And don't doubt yourself or your daughter.....the symptoms are real and need sorting.

[Fruitandnutcase in reply to waveylines]

Yes, pay to join ThyroidUK, read as much as you can about thyroid conditions.

Make daily notes on her symptoms and how she feels - along with anything she is taking use bullet points rather than writing an essay. Jot down any questions you have so that when you go to your doctor or endocrinologist you w9nt forget to ask them while you are in.

To be honest I would pay for a Medichecks blood test and have everything thyroid tested. I ended up doing that because there was no way the NHS were going to do it - there really is something wrong when your consultant puts T3 on the list and the labs ignore it.

Good luck with it all, absolutely awful for your poor daughter which means it’s a nightmare for you too.

[Briggsi in reply to Fruitandnutcase]

I will do what I can as I am a single parent. I am focusing on affording the private blood tests. This forum is truly amazing and I would love to try and help raise awareness.

[Briggsi in reply to waveylines]

Thank you I have certainly learnt a lot from joining to this community.

[Sleepman]

I am pretty new to all this but I did have the swing in symptoms while thyroid was being attacked. Night sweats etc. The a summer wearing coats.

I have found this forum a little scary at first but really kind, with deep knowledge.

Doctors are not trained on thyroid properly. Just do not expect too much from them/ it is not there fault.

It seems quite a few autoimmune thyroid peeps cannot take gluten, I am one of them.

Has she been blood tested for coeliac ? it does not always show up on bloods. Glandular fever ? When I am poorly my glands swell under my arms. Do not just stop gluten before tests are done as you are supposed to be on gluten for 6 weeks.

A few struggle on standard levo/T4 tablet and need t3 . Most people are fine and it is pretty straight forward.

As the wise ones advise. Blood tests on Folate/B12 and D then if required boost them. I think it is that it helps to convert the T4 to T3 that is what is the active ingredient.

[Hectorsmum2]

I believe a lot of people find going gluten free helps reduce the antibodies. Have you applied for pip for her, it might help with funds to pay for treatment and tests.

[Briggsi in reply to Hectorsmum2]

I will look into that thank you

[Eddie83]

High TPO antibodies are definitely indicative of Hashimoto's. The issue is, how do you get rid of the antibodies? The average GP is going to give the patient levo because their thyroid is under stress, but that does not address the antibody problem. What does address the problem, is to search for environmental problems: either high levels of toxins (e.g. lead, mercury) in the body, or something in the patient's diet that is causing it. In my case I know what caused it: gluten intolerance had eroded the villi in my intestine so badly, that junk like peptides the body was unfamiliar with, were getting into my bloodstream, setting off my body's immune system. If the GP doesn't know how to look for toxins or food intolerances, then you need to find an MD or ND who understands the link between these problems, and autoimmunity.

[Briggsi]

Thank you 😊

[Poniesrfun]

You might want to read this thyca.org/download/document... and download a copy for any doctor you or your daughter encounters. IMO I would be pursuing an ultrasound of the thyroid and lymph nodes. It seems concerning to me that you mention "lumps" at side of and lower neck and armpit - which are lymph node locations. Why are there swollen lymph nodes...? I certainly don't want to alarm you or your daughter but the folks at the walk-in might have been on to something - I'm surprised they didn't help you with some kind of appropriate follow up. It certainly sounds like you have been foisted off by clueless GP's. Nodules at the back of the thyroid which can interfere with breathing and/or swallowing won't be felt unless the GP has Xray fingers.

Patti in Arizona

[Briggsi]

Hi everyone just wondered if someone can help.

As I said before my daughter had a thyroid Antibodies test of 257 back in May. She was told to manage symptoms and GP would reassess evert 6 months. She had a test done a few weeks ago and here are the results, however these were done late afternoon as we didn't know they should be done in a morning. She had also taken her vitamins prior to these tests. Is there anything I should be concerned about?

B12 438ng/L range 197.0-771.0

Serum C 0.86mg/L range 0.0-5.0

Serum Ferritin 20ug/L range 15.0 -150.0

Serum Folate 11.6ug/L range 3.8 - 26.8

Serum TSH 2.27mIU/L range 0.3 - 5.5

They did various other bloods that were classed as normal but this one worried me.

Lymphocyte count 3.16 10*9/L range 1.0 -3.0

Thanks