High TPO levels - new to all of this…advice appreciated

[Mumofthyroidteen]

Sorry for my lack of knowledge but this is all new to me…my 15 year old daughter has been suffering from muscle aches, joint pain, fatigue and loosing hair for ages. Her bloods have come back as antibody thyroid peroxide as 145 the first test and 125 3 months later. Her TSH is7.5. Can anyone shed some light as to what to do next. She can’t be seen again by consultant until March. It’s her GCSE year and it’s awful to watch her struggle daily. Thank you in advance x

[PurpleNails Administrator]

Has she been started on replacement levothyroxine yet?

The Thyroid stimulating hormone TSH is higher than normal, it’s a hormone from the pituitary. When it senses thyroid level are low it rises signalling the thyroid to make new hormone. So its an indicator something wrong with her thyroid level.

So the important question is - what’s her thyroid levels? Did the doctor test FT4 and FT3?

The high antibodies shows this is autoimmune. Her immune system is mistakenly attacking her thyroid. Sometimes this can cause levels to fluctuate, in early stages the destroyed cell release hormones causing high levels then over time the thyroid becomes under-active.

This is called autoimmune thyroiditis in UK also known as Hashimotos. But doctors don’t know how to treat the autoimmune aspect, they treat the condition by replacing the low levels.

Has she been referred to an endocrinologist, usually a GP can begin treatment. It may be because she is categorised as a child?

Does she already have an consultant for an existing condition? Your comment about not seeing consultant again until March makes me ask. GPs are dreadful at passing any health concern to an existing specialist even if not related. They could easily liaise if any doubt but it’s simple job for them to say down to specialist.

Has she had any other tests, it important to test folate, ferritin, B12 and vitamin D? Often low with thyroid issues and compounds symptoms.

Testing: arrange any thyroid blood test first thing in morning after fasting overnight. This will show consistent results and TSH is highest, FT4 lowest at that stage of day, doctors aren't taught this & ranges do not account for any variation of time. If she were on replacement medication that should be taken after the draw.

Does she currently take any supplements. Check if any contain biotin and avoid week before draw as biotin can interfere with test and caused skewed results.

[Mumofthyroidteen in reply to PurpleNails]

Thank you so much for you reply. I have so much to learn and didn’t realise Vit levels were linked. Here are her blood results from a few years ago but can’t find any recent so will ask for these to be redone asap.

Ferritin Etc levels

[PurpleNails Administrator in reply to Mumofthyroidteen]

Her bloods have come back as antibody thyroid peroxide as 145 the first test and 125 3 months later. Her TSH is 7.5.

TPO & TSH are usually tested at same time. 2 over range TSH levels, 3 months apart usually means GP can start levothyroxine. Hypothyroidism is treated by GP in primary care. Are you saying this isn’t the case?

All her nutrients are low were poor on those test results. Ferritin and Folate just in range. Vitamin D and B12 need improvement to be optimal.

Request retest you need current results. If you point out her recent thyroid diagnosis and historical readings they should oblige. Do you find your GP helpful?

[radd]

Mumofthyroidteen,

Welcome to our forum and sorry to hear about your daughters thyroid problems.

Elevated thyroid antibodies means Hashimotos Autoimmune Disease, which is the most common cause of hypothyroidism, which may be slowed but is progressive. Your daughters elevated TSH evidences a struggling thyroid gland and the treatment would be Levothyroxine once thyroid hormones have reduced enough to initiate replacement meds. Have FT4 & FT3 thyroid hormone levels been tested?

Hashi can takes years to reveal itself by which time gut absorption issues & nutrient deficiencies may have occurred. Ask your GP to test your daughters Vit B12, folate, Vit D & ferritin levels. Also thyroid hormones if they haven't been done. Post all results complete with ranges (numbers in brackets) for members to comment.

,

Hypothyroidism symptoms

thyroiduk.org/if-you-are-un...

.

Hashimotos

thyroiduk.org/if-you-are-hy...

[bellk in reply to radd]

My sympathies to your daughter-I can remember walking home from school, not sure if I could be bothered to put one foot in front of the other, again. But in another way she is lucky girl:born in a time when resources available for parents to find out why.

[radd in reply to bellk]

bellk,

You have mistakenly replied to me so I'm tagging Mumofthyroidteen

[bellk in reply to radd]

Thanks, sorry for my fuzzy brain.

[SlowDragon Administrator]

With TSH over 5 and high thyroid antibodies she needs further testing

Assuming second test TSH is over 5 she should be started on levothyroxine

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

ESSENTIAL to test vitamin D, folate, ferritin and B12 if not been tested yet

Low vitamin levels are EXTREMELY common when hypothyroid due to low stomach acid, this leads to poor nutrient absorption and low vitamins as direct result

Important to regularly retest vitamin levels and maintain at good levels by supplementing in necessary

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in

Levothyroxine must be taken every day, on empty stomach and then nothing apart from water for at least an hour after

Read posts on here to learn as much as possible about autoimmune thyroid disease

She also needs coeliac blood test done

[Mumofthyroidteen in reply to SlowDragon]

Thank you

Vit levels

[SlowDragon Administrator in reply to Mumofthyroidteen]

So what’s GP doing about these DIRE results

Ferritin is clearly appalling

She needs full iron panel test for anaemia and highly likely to need iron supplements

B12 and folate extremely low

She needs full testing for Pernicious Anaemia before starting on B12 injections or daily B12 supplements and folic acid supplements

Is she vegetarian or vegan

Does she suffer from heavy periods (common hypothyroid symptom)

Insist they test vitamin D and run coeliac blood test

[SlowDragon Administrator in reply to Mumofthyroidteen]

Just realised these results are a year old

Was she prescribed iron supplements

If not…..why not

Obviously needs all three retested ASAP

[Mumofthyroidteen in reply to SlowDragon]

No she wasn’t as I was told within range. Now I have the nhs app I realise they were low

[SlowDragon Administrator in reply to Mumofthyroidteen]

That’s utterly appalling care

Make an appointment with GP and request full iron panel test for anaemia, coeliac blood test, folate B12 and testing for Pernicious Anaemia and vitamin D test

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Low vitamin levels tend to lower TSH …..so her thyroid levels are likely far worse than appear

[Mumofthyroidteen in reply to SlowDragon]

Thank you Slowdragon. I will make an appointment.

[SlowDragon Administrator in reply to Mumofthyroidteen]

Is she vegetarian or vegan Or heavy periods?

[Mumofthyroidteen in reply to SlowDragon]

No not vegetarian or heavy periods

[SlowDragon Administrator in reply to Mumofthyroidteen]

Then even more likely due to being hypothyroid and/or low stomach acid/gut issues and/or coeliac/gluten intolerance

[SlowDragon Administrator in reply to Mumofthyroidteen]

Suggest you print out guidelines ready to push for full testing

Rare that a GP understands the interconnection between gut and thyroid

Low iron/ferritin

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Starting levothyroxine

gp-update.co.uk/Latest-Upda...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Low B12 symptoms

b12deficiency.info/signs-an...

Low vitamin D strongly linked to being hypothyroid

All autoimmune thyroid patients should be tested for coeliac disease

[Mumofthyroidteen in reply to SlowDragon]

Her Vit D is 67

[SlowDragon Administrator in reply to Mumofthyroidteen]

So vitamin D not too bad

Aim to maintain at least around 80nmol and around 100nmol maybe better

[Mumofthyroidteen in reply to SlowDragon]

Wow thank you!

[Batty1 in reply to Mumofthyroidteen]

You need different doctors

[SlowDragon Administrator]

Hairloss suggests low iron/ferritin

Joint pain likely low vitamin D

Don’t start any supplements, get vitamin D, folate, B12 and full iron panel test for anaemia done by GP NOW

Hypothyroidism is managed by a GP she doesn’t need to see an endocrinologist to be started on levothyroxine

See flow charts on here re when to start on levothyroxine

gp-update.co.uk/Latest-Upda...

See similar post from yesterday

healthunlocked.com/thyroidu...

If you decide to see an endocrinologist privately be aware vast majority of endocrinologists are diabetes specialists and not thyroid

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

Waiting times for NHS thyroid specialist are extremely long

[KIRM]

And regarding your daughters upcoming GCSES, your daughters condition qualifies her for ‘allowance of extra time/ breaks.’ You need to approach the examination officer at school and they will apply for approval on her behalf. A Drs letter was all we were asked for.

[Fruitandnutcase in reply to KIRM]

Yes, please do that. I used to invigilate for exams. From what I remember the access applications go in fairly early but don’t let anyone put you off because we often had students who were granted extra help at very short notice - our Exams Officer and the whole department were really caring and did everything possible to support their students - I’m sure your daughter will find that the invigilators who support students during exams are all kind and supportive. Everyone involved in the exam system will only want the best for her so that she is not disadvantaged in any way.Your poor daughter - with results like that it’s a wonder she is still standing. Her treatment or in this case lack of it really is appalling. If you decide to see someone privately have a look at the list of thyroid friendly consultants you can get from TUK and make sure whoever you see deals with thyroid problems not people who are diabetic.

Good luck with it all.

[Charlie-Farley]

Hi Mumofthyroidteen

Great advice on here

Do not underestimate the level of general ignorance re thyroid issues and interpretation of blood results by the medical profession- I was under medicated for 6 months after diagnosis and made ill. I fought for every dose increase as each time I was ‘in range’. I’m well now.

The thyroid is not “topped up” your daughter will need to be bought gradually to a full replacement dose. You can have bloods ‘in range’ but still be hypo. It’s about being well. Optimal vitamin levels will be essential also and not just being ‘in range’.

How she feels should be the driving factor.

The trouble is the majority of GPs don’t understand what the range is there for - it’s a guide only! Not a diktat.

Sadly most GPs think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ping-pong ball in the cup they win a prize. They simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well OR (panic stations) the range might not apply at all! 😱😂

I have had to educate a few GPs at my local surgery -(they don’t like it). Thankfully I do have a scientific background (blessed) and data is data, so once I had the good advice on this forum - I ran with it.

Vitamins need to be higher than just in the bottom of the range as others have said. GPs in the main have no idea on vitamins either - refer back to cup/ping-ping ball scenario.

Much of my understanding has coming from reading on here for a good year and reading a book and some papers - worth the effort but I do have to read through a few times (highlighter in hand) and occasionally have a nap to give my brain a rest! 🤣👍

This forum will prove to be a valuable source of support and advice in the coming months and years. It certainly has for me!

[Sparklingsunshine in reply to Charlie-Farley]

HiI always feel like asking these range obsessed medics if they would like to see £1 in their bank account or £100. Both are in range, ie not in the red, but one is clearly preferable to the other.

[Charlie-Farley]

Brilliant analogy! 😂👍

[Catseyes235]

She definitely is demonstrating hypothyroid symptoms and needs thyroid replacement soon as possible. Her doctor should be able to prescribe this without further consultation as s/he will have her results. My daughter had hyperthyroid symptoms at same age - had to be firm to get thyroid tests. She might need you to fight her corner as one thing you can lose when hypo is fight and oomph which she’ll need for exams but do alert her school as they should know she may have a bit of brain fog. Good luck to you both !

[Mumofthyroidteen]

Than k you so much . I will get onto the school this week. Her first GCSE is Monday!

[Mumofthyroidteen]

Update The consultant has said even though her TPO levels were 145 and then 125 her TSH levels were 5.5 and now 7.5 they want to retest in 3 months to see if TSH is still going up. School have been amazing and put in for rest breaks etc so just got to wait again now until March for more bloods

[tattybogle in reply to Mumofthyroidteen]

I appreciate the need for caution before prescribing lifelong thyroid medication ... BUT. Assuming the 5.5 was over the lab range ? ( it almost certainly was , most lab ranges for TSH now go up to approx 3.6 or 4.5 ish at the top end , but it is possible that your lab uses one that goes up to 5.6 )

So if GP's already have 2 x over range TSH results 3 months apart,

AND they have clearly positive TPOab which show then that the 'subclinical ' hypothyroidism is caused by autoimmunity , an is therefore likely to worsen to over time..... AND they have some one who is already struggling with symptoms that could be caused by hypothyroidism.

Then according to NHS thyroid treatment guidelines , they "could consider" treating her today.

I'm not saying you should do that, but honestly, if they have strongly positive TPOab 's confirming autoimmune disease there seems little point waiting for it to get worse.... it might only get worse very, very, slowly .... over many years .... but with positive proof of TPOab , it's pretty much certain it's not going to get any better .

If she had these TSH result and symptoms, but did not have evidence of Autoimmune disease (TPOab ) . then as a parent i would definitely want to be more cautious, and wait longer to see if the TSH went down again on its own.

[Mumofthyroidteen in reply to tattybogle]

I’ve just checked and the range is to 5.6 so my feeling is they are saying they want one more blood test. I feel like I am in the dark but am gaining knowledge from this site. So are you saying that her high TPO levels will always be high? Our daughter is also being investigated for Axial Spa which is an auto immune disease and also Marfans Syndrome but waiting for genetic tests. My caution comes from maybe the symptoms are these other diseases ….?

[tattybogle in reply to Mumofthyroidteen]

Ok , so if 5.6 is top of range then they do have to wait for 3 months to get confirmation of 2nd over range TSH before they are allowed to consider treatment.

It is not that her antibodies 'will always be high'.... they do fluctuate anyway .... and over many years of autoimmune thyroid disease, they do have a tendency to go down .. or at least mine did , they were in the thousands in 2003 and now they are 195.

.... but this doesn't mean my autoimmune disease has 'got better' or that my thyroid is working better.... it is probably just an indication that there is now less healthy thyroid tissue remaining to be damaged... so even though i now have less antibodies , my thyoid has been being damaged by my immune system for >20 yrs so it's probably in a worse state than when my antibodies were in the thousands.

TPOab's do no DO the damage to the thyroid tissue ... they are an indication that damage to the thyroid tissue HAS happened.

When thyroid peroxidase from the thyroid ends up in the blood stream (where it shouldn't be ).. then TPO antibodies stick to it as markers saying "this shouldn't be here .. somebody clean it up"

As far as i understand it ,,, TPOab are specific to thyroid damage,

(i think TGab can be there from other causes not just thyroid damage , but not 100% sure on my facts about that)

So my understanding is that once they have evidence of significantly raised TPOab, it's pretty conclusive that there IS an issue with autoimmune damage to the thyroid TO SOME DEGREE, and there is no known cure for the autoimmune aspect that is causing the damage... but this damage may, or may not, be the thing that is causing any symptoms.

In some people there can be slight ongoing damage to the thyroid by the autoimmune system for many many years before thyroid hormone levels are compromised enough for any symptoms to be noticed.

However autoimmunity and antibodies are very complex subject, and are not very well tested or researched. So it's hard to find any concrete facts.

Given the other investigations she is having, caution about 'symptoms' is wise.

However if she is found to have other autoimmune disease, this actually strengthens the case for having autoimmune hypothyroidism AS WELL as the other autoimmune disease.

People who have other autoimmune diseases are known to be more likely to also have/get autoimmune thyroid disease at some point.

[Mumofthyroidteen]

My daughter has had a SST done now and that did not show anything up apparently. They now want to do an MRI of her pituitary gland. Can anyone shed some light on my they are going down this route ?