Low Anti Tpo Abs: Hello, can anyone help me... - Thyroid UK

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Low Anti Tpo Abs

steph26 profile image
20 Replies

Hello, can anyone help me interpret my latest blood results please. I am on 25mg of Eltroxine daily for last 6 weeks. I have had to battle with my doc to get that. Had right thyroid lobe removed in Jan and have had tiredness, aches, memory, constipation and dry skin problems since. Results attached are may and June. Doc is adamant I am not hypo and should not be on meds long term. I have improved slightly but still not right. Any help or thoughts appreciated. Thanks.

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steph26
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SeasideSusie profile image
SeasideSusieRemembering

Steph

Surely low TPO antibodies is a good thing.

Of course you are hypo. Your TSH is too high for someone on Levo, and your FT4 is very low in range.

Are you still under the hospital? Can you communicate with the consultant so s/he can instruct your GP about dose of Levo?

steph26 profile image
steph26 in reply toSeasideSusie

Hi Susie, thanks for reply. I don't know what low TPO means so that was why I was looking for help. If it is a good thing, that's great. Not due back at hospital for another 6 months.

SeasideSusie profile image
SeasideSusieRemembering in reply tosteph26

Steph

Antibodies are what destroys your thyroid, so the fact that yours are so very low is excellent. TPO are Thyroid Peroxidase antibodies.

But you do need an increase in Levo, you need to get your TSH down to around 1 or even below, and your FT4 plus FT3 nearer the upper end of the range - Total T3 isn't a particularly useful test.

steph26 profile image
steph26 in reply toSeasideSusie

Thanks Susie x

shaws profile image
shawsAdministrator

A starting dose is 50mcg of levothyroxine not 25mcg. If you are in the UK doctors have been told not to prescribe until the TSH is a barbaric 10, whereas in other countries if it goes above 3 we are prescribed.

The fact that your TSH is above the top of the range he should have prescribed 50mcg but they are scared in case the patient has a reaction. It appears to me that they are completely unaware that levothyroxine is a synthetic hormone. Hormones don't harm and are needed to run our metabolism.

You are symptomatic as you've had a lobe removed and as SeasideSusie has suggested phone Endocrinologist and ask him to give you an adequate dose.

steph26 profile image
steph26 in reply toshaws

I am in Ireland so not sure what the guide are here but it has been an uphill battle to get help. Thank you for replying.

SlowDragon profile image
SlowDragonAdministrator

Also absolutely essential to test vitamin D, folate, ferritin and B12. Often these are too low and can lower TSH

Your FT4 is too low

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo 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)

Is this how you did the test

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Also request the list of recommended thyroid specialists from Thyroid UK

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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.

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

steph26 profile image
steph26 in reply toSlowDragon

Hi there. I am in Ireland so don't know the guidelines. My doc just thinks because I am in range that there is nothing wrong with me. It is 6 months since my surgery and it has been a nightmare. No free healthcare here unfortunately so I have to pay every time I see her which is so frustrating. She is a very awkward lady. I said to her the last visit that I felt she was not listening to me and her answer was i feel the same about you. Not sure how far I will get asking for other checks. I will see if those private companies cover Ireland. Thanks for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply tosteph26

See if you can get vitamins tested by GP or privately

steph26 profile image
steph26 in reply toSlowDragon

Thanks. Will do.

shaws profile image
shawsAdministrator in reply tosteph26

I'm sorry you've hit a brick wall with your doctor. They seem to not listen to the patient and have no understanding at all how we feel (with symptoms too) and which they are supposed to heal with optimum dose of hormones, i.e. the main being T3. So I think you probably need a T3/T4 combination as it is T3 which is needed in our millions of T3 receptor cells. I shall give a couple of links from a doctor who understands hormones. We are taking thyroid hormone replacements not medications for a problem and we cannot function without hormones being optimal.

Doctors and endocrinologists seem to have lost this training and only look at a blood test result on a piece of paper and will tell the patient 'they're normal' when the patient feels anything but. I should think guidelines are the same worldwide, i.e. get the TSH into range (be it the top - when it should be at the bottom) with FT4 and FT3 in the upper part of the range and these are rarely tested.

That's why most of us on this forum source our own hormones and self-medicate. We have the freedom then to concentrate on our symptoms being relieved. One of our Advisers only took only an initial blood test and thereafter increased doses slowly until symptoms were relieved . No such luck in these modern times as we are prescribed according to the TSH and not clinical symptoms.

The second half of this is informative:-

hormonerestoration.com/

hormonerestoration.com/Fati...

hormonerestoration.com/Thyr...

steph26 profile image
steph26 in reply toshaws

Hi Shaws

Sorry to bother you again but I was wondering do you know if hypo affects FSH levels. My gp has told me I am post menopausal. A year ago I went for bloods due to tiredness, memory etc. before my nodule was found and she told me I was not in menopause yet. Then I found the lump. Had surgery and all symptoms worsened.

It just seems strange to me that I have gone through it in such a short time. I am 48 now. Wondering if my thyroid is affecting the reading and that is why she thinks that. Or are all these symptons the menopause and not thyroid at all?

Any comments would be much appreciated

Thanks

Steph

trelemorele profile image
trelemorele in reply tosteph26

Hypo affects hormones but you are clearly menopausal from fsh levels.and that is more due to your age rather than thyroid.

Did you consider having HRT?

Menopause symptoms are similar to hypo.

Having said that your thyroid levels show you are under medicated on levothyroxine.

Worth fixing both I say.

steph26 profile image
steph26 in reply totrelemorele

Thanks for reply. I am back at docs on Monday so will see what happens then. 😱

steph26 profile image
steph26

I know. She is a difficult one to deal with. Changing is not as easy as that because I am in Ireland and distance is an issue to another practice. I may have no choice though. Thanks for your reply.

shaws profile image
shawsAdministrator in reply tosteph26

Would you be able to source your own thyroid hormones, guided by members on this site?

You would not believe how many diagnosis I had, (and many on the forum similar experiences of ineptness) nor how very unwell I was and even had an op which I didn't need. Not one of the many, many doctors and Specialist tested thyroid hormones and discharged from the A&E after an overnight stay with 'probably viral with high cholesterol' (3 days before I diagnosed myself). TSH was 100. So, yes, I have no faith in doctors at all now. Like many on this forum.

My doctor phoned me 3 hours after blood test and asked 'who gave you a form'. "I did" I said (I had phoned surgery late Friday and demanded a blood test for thyroid hormones).

steph26 profile image
steph26 in reply toshaws

What a nightmare. I am so shocked that so many people are having such a hard time getting help. Thanks for yours. Xx

shaws profile image
shawsAdministrator in reply tosteph26

I think the biggest mistake is in the diagnosis of hypothyroidism is that doctors are no longer taught the most common of the clinical symptoms. Before that we were diagnosed upon them (no blood tests then) and given a trial of NDT (natural dessicated thyroid hormones) made from pigs' thyroid glands) and it was increased slowly until symptom-free.

Seems a good way to do things. As far as I understand, it was Big Pharma who wanted a share of monies and persuaded - first in the USA I understand, - and doctors given monetary incentives in order to gradually change from symptoms and NDT, to blood test alone and then levothyroxine when TSH reached a certain point.

In these 'modern' times when we complain and TSH is somewhere in the range, we are told it is nothing to do with hypothyroidism as TSH and T4 are fine but they will willingly prescribe anti-d's by telling patient they're depressed (low T3 most probably the culprit but rarely checked). Given Pain relief for muscle/joint aches/pains and so on. Some patients are no longer able to work due to fatigue (cannot be tested for but is a clinical symptom).

I consulted with two doctors - both held my hand (i.e. is skin cool, i.e. low temp due to hypo) and they asked about fatigue etc and if I had other symptoms.

You can say you've taken advice from Healthunlocked Thyroiduk.org.uk the recommended site for information/advice about dysfunctions of the thyroid gland. You can also print off the following but most stick to the guidelines they've been given. Highlight the part of TSH as a measuring tool for hypothyroidism.

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

steph26 profile image
steph26 in reply toshaws

Thanks Shaws. You are very good and thanks for taking the time to give me all the info. Xx

steph26 profile image
steph26

Thanks. Xx

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