Help please!! : Hello, These are my latest... - Thyroid UK

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Help please!!

Florah profile image
55 Replies

Hello,

These are my latest results:

TSH- 9.88

Free T3- 3.7

Free T4- 13.9

What do they mean?

Thank you

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Florah profile image
Florah
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55 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Please add ranges on Ft4 and Ft3 results (figures in brackets after each result)

Is this your first abnormal test result

With TSH over 5 but under 10, it’s likely GP will want to repeat test in 6 weeks before starting levothyroxine

Technically you’re results are sub-clinical…..if TSH was over 10 or Ft4 below bottom of range, levothyroxine is started immediately

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Like being diabetic, being hypothyroid is a long term chronic condition

Levothyroxine is replacement thyroid hormone because your thyroid is struggling

Have you had thyroid antibodies tested, or vitamin D, folate, ferritin and B12

Low vitamin levels are very common when hypothyroid

About 90% of primary hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s usually diagnosed by high thyroid antibodies

What symptoms are you having?

Approx age?

Hashimoto’s frequently starts around menopause or after pregnancy

Florah profile image
Florah in reply to SlowDragon

Thank you Slowdragon

I was diagnosed with Graves diseases 2022. Was on Carbimazole for around 6 months. Wasn’t medicated for 6 months and then took blood tests mid June and told underactive. I’ve been prescribed 100mcg Levothyroxine.

I’m 28

Symptoms- tiredness, constipation, weight gain, low mood, lack of energy.

Will I be taking Levothyroxine long term?

Thank you for your help.

Buddy195 profile image
Buddy195Administrator in reply to Florah

How long have you been taking 100mcg Levothyroxine Florah?

Did you ever have antibody tests to confirm your original Graves diagnosis?

Florah profile image
Florah

Buddy195

I’ve been taking 100mcg of Levothyroxine since 3/7/22

I believe I did have the antibody test to confirm Graves. It’s also on my medical records

Is so stressful and confusing! :( I feel unwell

SlowDragon profile image
SlowDragonAdministrator in reply to Florah

It typically takes at least 10-14 days to even begin to start to notice any improvements

Which brand of levothyroxine are you currently taking

Are you taking levothyroxine waking up or at bedtime

It’s a very fussy hormone and must be taken on empty stomach and then nothing apart from water for at least an hour after

You have been started on a decent dose

(far too many people get started on ludicrously small dose of 25mcg and left there far too long)

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

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

Low vitamin levels are extremely common when cause is autoimmune….as your is

Wether you started with Graves’ disease…..or Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

To confirm Graves’ disease they should have tested TSI or Trab antibodies……but frequently if results look hyperthyroid it’s just assumed it’s Graves’ disease.

Suggest you get access to your previous test results and see if you can find antibodies test results

Having started on decent dose levothyroxine, you probably don’t need to retest for at least 3 Months…..then levels may need fine tuning

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

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

If vitamins not been tested yet, get GP to test now

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

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Florah profile image
Florah in reply to SlowDragon

SlowDragon thank you for the information

Levothyroxine brand- PL Holder (Accord)

Take it in the morning before breakfast at least 1 hr before.

I do now have access to my medical records through the NHS & Airmid UK app

pennyannie profile image
pennyannie

Hello Flora and welcome to the forum :

I have Graves Disease and took Carbimazole but then I had RAI thyroid ablation and put on 100 mcg - Levothyroxine - T4.

We do need to know exactly which antibodies were over range and positive at diagnosis and the medical evidence on which your treatment was based.

Am a little confused as it's only July 2022 now ??

Graves is an auto immune disease that tends to wax and wane throughout one's life.

You are now unwell again, so please let's find out what was written as the cause of your illness and why you went to the doctor in the first place.

Florah profile image
Florah

pennyannie - thank you for you response.

Please find attached info

Results
pennyannie profile image
pennyannie in reply to Florah

I have blown this up and also zoomed in and out with a magnifying mirror but I can't see

either of the antibodies unique to Graves Disease -

Can you see any mention of TR ab or TSI readings and range ?

I can just see a TPO result which is not unique to Graves and likely a diagnosis of

Hashimoto's auto immune disease.

Please confirm back as my eyes are not too good today:

SlowDragon profile image
SlowDragonAdministrator in reply to Florah

This looks like it’s TPO antibodies test and with result at over 1000 that’s most likely Hashimoto’s

Early stage Hashimoto’s, as thyroid is attacked and destroyed, high levels of thyroid hormones can be released as the cells breakdown. It’s not true hyperthyroidism

After each attack thyroid becomes more disabled and we become more hypothyroid

Request vitamin D, folate, ferritin and B12 levels tested and coeliac blood test if not had these tested yet

Florah profile image
Florah in reply to SlowDragon

Thank you, I’ll request the above. They just want to do minimal. !

SlowDragon profile image
SlowDragonAdministrator in reply to Florah

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Florah profile image
Florah

pennyannie

Results
pennyannie profile image
pennyannie in reply to Florah

What is this reading about TSH antibody - it's been blacked out - this maybe what I'm

asking for a TR ab - a thyroid receptor blocking antibody - otherwise we are looking for the

mention of a TSI - a thyroid stimulating antibody ??

pennyannie profile image
pennyannie in reply to pennyannie

Have you letter stating what you have been diagnosed with ?

Florah profile image
Florah in reply to pennyannie

Yes got a letter from consultant, diagnosed with Graves’ disease/ Thyrotoxicosis summer 2021

pennyannie profile image
pennyannie in reply to Florah

Does he write which antibodies are over range and positive as if these are your only results it looks more like Hashimoto's AI disease.

Can you see what's under the blacked out bits if it's relevant at all ?

Florah profile image
Florah in reply to pennyannie

pennyannie the info that’s blocked out is the name and contact numbers of the doctors. No results

Florah profile image
Florah in reply to pennyannie

pennyannie

Serum free triiodothyronine level ( 11.3 pool/L ( 3.1-6.8)

Serum TSH level <0.02 ml U/L (0.3-5.0)

Serum free T4 level 24.4 pmol/L (12.0-22.0)

Is this helpful?

pennyannie profile image
pennyannie in reply to Florah

All this tells us that your TSH is suppressed and that your T3 is over range as is your T4 : so all 3 results- out of the accepted range :

However it could equally be a blood test result for Hashimoto's as this disease starts off like Graves, with over range T3 and 4 results but these results are transient and the T3 and T4 fall back down into range by themselves, and after a time the patient generally becomes hypothyroid all by themselves.

Graves levels tend to keep rising, and to much higher levels and the AT drug is prescribed as Graves is considered life threatening if not medicated.

The NHS generally allocate a 15-18 month window for treatment with AT drugs and the subject of a thyroidectomy or RAI thyroid ablation is generally mentioned as the ' next step ' .

Last year we were with Covid restrictions so maybe it didn't happen as per the guidelines I don't know but am seriously confused if you haven't any more information and no Graves antibodies positive and over range, and just with a TPO diagnosis.

TSH110 profile image
TSH110 in reply to pennyannie

I wonder if you have had what I do, it is like Graves but becomes hypothyroidism over time with hyper blood. My first results were thought to be Graves but the next ones were very overtly hypothyroid and only about a week apart, TSH suppressed then TSH 110 it was a symptom rollercoaster ride I can tell you. It’s atropic autoimmune thyroiditis. You should contact the endos secretary and say you want copies of all your blood tests for your own records, it’s your right to have them and they are normally very obliging. Don't ask the endo directly.

Florah profile image
Florah

pennyannie

That is making more sense. I was on Carbimazole for around 6 months, stopped meds for 6 months and had regular blood tests, then told I’m hypo and now on 100mcg Levothyroxine

pennyannie profile image
pennyannie in reply to Florah

Yes, I'm inclined to agree and that you actually have Hashimoto's AI disease.

Do you have issues with your eyes - if using any drops, lotions, potions or gels, please just make sure all of them, even if prescribed, are Preservative Free.

Would you like some bedtime reading ??

thyroidpharmacist.com for Hashimoto's or elaine-moore.com - for Graves ?

Florah profile image
Florah

I was seeing a consultant regular for TED and there was no concerns so were discharged

Florah profile image
Florah

pennyannie

This is exhausting, don’t want to be on medication for life. I feel so rubbish :(

pennyannie profile image
pennyannie in reply to Florah

Well I'm exhausted as well with all this rallying back and forth, like Wimbledon !!

Let's just stop for the night as you have a lot of information to process.

The reality is you may well need to be on medication - thyroid hormone replacement for the rest of your life - and when optimally medicated you should have your health and well being restored and be able to play tennis and maybe in a park near Wimbledon.

We need to see a full thyroid panel to know where your TSH, T3, T4, antibodies, inflammation and ferritin, folate, B12 and vitamin D now sit in the ranges and you simply start a new post with these results and ranges and you will be talked through what this all means and your next best step back to better health.

Currently your TSH is way over range shouting out for more thyroid hormones and needs to bought down, to around 1 : and increases in T4 will do this.

Your T3 is too low at around 16% if we use the most used range which is 3.10 - 6.80 -

and your T4 too low at around 20% if we use the most used range of 12 - 22,00 :

We generally feel at our best when out T4 is up in, or towards the top quadrant of it's range as this should in theory covert to a good level of T3 - which is the active hormone that runs all your bodily functions.

When your metabolism isn't running quite right for you it is hard to extract your essential key nutrients through your food and this in turn compounds your ability to absorb and utilise the thyroid hormone replacement well :

No thyroid hormone works effectively until your ferritin is up and over 70 -

I know I feel at my best and need to maintain my core strength with a ferritin at around 100 : folate at around 20 : active B12 at 75 ++ and vitamin D at around 100 :

Sleep on this and we can pick it all up again tomorrow - if you wish :

Don't worry you are in the right place and you will be helped, just like I was several years ago.

You are currently very hypothyroid and the symptoms are debilitating so be kind to yourself and rest up, and turn off for the evening as you are now with information overload and it all takes time to fall into place and make sense.

Florah profile image
Florah in reply to pennyannie

Sorry what I meant was thyroid disorders is making me so tired. Thank you pennyannie . Hope you have a lovely evening. Appreciate all of your help!

pennyannie profile image
pennyannie in reply to Florah

No worries, the thyroid is the body's engine and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

I've had a good mental workout now and thank you for the challenge, and now it's c--p TV otherwise I'll not sleep tonight as with Graves I'm now a bit wired and need to unwind and should have turned this off by 6 pm otherwise this Cinderella doesn't sleep :

Florah profile image
Florah

pennyannie - I just wish thyroid disorders was more recognised and understood. Especially like the way diabetes is.

I’ve just applied for medical exemption

pennyannie profile image
pennyannie in reply to Florah

Ditto - and this is why we are here, helping each other and giving back the help we received when we came on here asking for advice.

This is an amazing forum because of the people on here that make it one and you might like to join Thyroid Uk who are the charity who support this forum and where you can read further about all tings thyroid and the other services you may need to use in order to take back some control of your health and well being.

thyroiduk.org

TSH110 profile image
TSH110 in reply to Florah

If your diagnosis is hyperthyroidism you won’t get the certificate (saves a fortune) which is a bit bonkers but you will do if it’s hypothyroidism. Barmpot or what?

Florah profile image
Florah in reply to TSH110

TSH110 Crazy isn’t it! I’ve just applied for my medical exemption certificate. They say because hyper is “treatable”.

Previously I brought the exemption for 3 months at a time.

pennyannie profile image
pennyannie in reply to Florah

I think you'll find you pay for AT medication :

But if I you already had medical exemption certificate, this applies for the rest of your life, irrespective of whatever else happens in your life :

Florah profile image
Florah in reply to pennyannie

pennyannie does the medical exemption (FP92A) have an expiry date?

helvella profile image
helvellaAdministratorThyroid UK in reply to Florah

Exemption certificates do have an expiry date. Not sure how long they last!

Note also that it is your responsibility to ensure it is in date. Being entitled to a certificate but not actually possessing one (out of date being a major reason) has resulted in patients being fined. So necessary to keep on top of expiry.

Most information you could want here:

nhsbsa.nhs.uk/exemption-cer...

Florah profile image
Florah in reply to helvella

helvella thank you

helvella profile image
helvellaAdministratorThyroid UK in reply to Florah

Just remember - if you are caught having to pay (between a prepayment certificate and an exemption), make sure you get the right sort of receipt. Full details at the link you have just seen! :-)

This is not a till receipt.

pennyannie profile image
pennyannie in reply to helvella

I think the medical exemption certificate is valid until such time as you reach that ' magic ' age when you also qualify for a bus pass, even if you have a bus service or not.

Florah profile image
Florah in reply to pennyannie

pennyannie ive just checked, it’s valid for 5 years before applying again. Unless you’re of age & get it free etc

pennyannie profile image
pennyannie in reply to Florah

Thank you - that's interesting - I would have turned 60 around 2 years after RAI thyroid ablation- so why I thought it was ' for life ' :

pennyannie profile image
pennyannie in reply to Florah

So, if you initially had the certificate for being hypothyroidism - you can't become hyperthyroid -

You may have become over medicated :

Or more to the point have Hashimoto's AI thyroid disease and experienced erratic own thyroid hormone production and ' a swing ' into hyper type symptoms.

Hashimoto's is not medicated as the T3and T4 fall back down into range themselves.

However your thyroid will try and recover, but with ever attack it becomes further damaged and ultimately disabled and you will likely be needing full spectrum thyroid hormone replacement.

TSH110 profile image
TSH110 in reply to pennyannie

And a damaged thyroid cannot regenerate like a liver can.

TSH110 profile image
TSH110 in reply to pennyannie

Oh no you don’t qualify for a bus pass until 66 now (unless you are in a metropolitan council like London or the Wirral who still give them at 60 and the underground) but free prescriptions come in at 60 in England although I heard they were planning on charging again till 66 or was it 67 oh just pick any number over 65.

pennyannie profile image
pennyannie in reply to TSH110

Well I'm 75 now, so my buss pass was at 60 but we haven't a bus any longer, as that was pulled without consultation a year or two before Covid - and we currently petitioning the Council to reinstate the bus, but I'm not holding my breath !!!

TSH110 profile image
TSH110 in reply to pennyannie

It’s bad isn’t it. Just isolated like that at the whim of a private bus company. Integrated public transport it isn’t.

TSH110 profile image
TSH110 in reply to helvella

I wonder what happens if they start charging for prescription for under 65’s - it was being mooted - given you no longer need it when you reach 60? I guess we’ll find out if the pension thieves also take our entitlement to free prescription away as well. I guess it would be a nice little earner fining us all for not having a current one 🙄

helvella profile image
helvellaAdministratorThyroid UK in reply to TSH110

As I understand, the age 60 bit was part of the balancing male/female. If women retire at 60, and that justifies exemption from charges, then on a gender equality basis, they have to also exempt men.

At the time, they couldn't quite bring themselves to remove the exemption from a five-year cohort of retired women between 60 and 65.

Especially as that is an age band in whom there is often a degree of failing health requiring more prescriptions - blood "thinners", statins, blood pressure, etc.

TSH110 profile image
TSH110 in reply to helvella

Do men not get MEC at 60 then? I felt tge pension age should have been lowered for men and if there’s a will there’s always a way to pay for it. I am annoyed because I lost six years of state pension with virtually no notice as they pulled the rug from under women of my age after being advised not to do it as it would cause severe hardship to many women in my age cohort who on average have been grossly underpaid compared to men during their working lives. In fact I am still incandescent with rage about it it was a huge amount of money that I will never ever be able to claw back even if I worked until I was 90 if I ever get there and most jobs I did, did not even allow you to join the pension fund so I have naff all otherwise all through no fault of my own. The thought of keeping going in physically demanding job for some few more years and probably beyond because of the cost of living skyrocketing when I have problems and know I am nowhere near as strong or as fit as I was even two years ago, fills me with anxiety and dread. If I can’t manage it I will be in a real pickle. It’s not good to have so many people in financially precarious situations but it reduces the pension bill with life expectancy falling, they’ve save a lot of money through covid deaths in that department too. As for the next generations working till 70+ and with such life expectancy inequality too, I suppose I am a lot luckier than those poor devils, but I remain decidedly disgruntled.

helvella profile image
helvellaAdministratorThyroid UK in reply to TSH110

Yes - men do now get exemption at 60. Unusually, the government website gives exactly what I want to quote:

State Pension age and prescription charges

Historically, the initial exemption age for prescriptions was for people aged 65 and over. This extension was then extended to women aged 60 and over in 1974. In 1995 this exemption was extended to men aged 60 and over based on the State Pension age (SPA) for women at that time. However, the rise in the SPA to 66 has now created a disconnect between the aged-based exemption and SPA. Currently, people receive free prescriptions when they turn 60 in England whereas the SPA has gradually been increasing for men and women – legislation is in place to increase to 67 then 68 in future years.

gov.uk/government/consultat...

(They appear to have said extension where they should have said exemption at the start of the second sentence.)

TSH110 profile image
TSH110 in reply to helvella

I went and used an out of date one in error I mean who keeps track of that? They just told me to apply for a new one I think they let me have the prescription I mean do they want us to die all for some administrative oversight and a jobsworth?

pennyannie profile image
pennyannie in reply to Florah

I have no idea - what does it say :

All I now is that I had to pay for my AT medication but once I had had RAI thyroid ablation and hypothyroid - a few years late, when I changed surgeries it was explained to me ' being hypothyroid ' I qualified for free prescriptions :

As it happens now, being hypothyroid I can't access through the NHS the full spectrum thyroid hormone replacement i need to keep me relatively well and self medicate and buy my own and my prescription is now just for eye drops which I also need to supplement for myself.

TSH110 profile image
TSH110 in reply to pennyannie

You get the certificate if you have a diagnosis of hypothyrodism including medically induced hypothyrodism caused by treatment for graves that is permanent, because you need thyroid hormone treatment for life and will die without it. If you have Graves and have treatment that is temporary (block and replace) the certificate is not given. It’s ridiculous but that’s what happens when people have to pay for their prescriptions and exemptions are made. It’s all free in Scotland and Wales of course.

TSH110 profile image
TSH110 in reply to Florah

I wonder if that was that a prepayment certificate to try and keep the cost of medications down?

TSH110 profile image
TSH110

They mean you are undermedicated and need a dose increase, if 6-8 weeks have elapsed on your current dose and those were the results. Given the TSH is so high most likely you will need an increase even if it’s less than 6-8 weeks.

TSH should be between 0.2 and 0.5 and the free t3 and free t4 in the top third of their range that’s why ranges are important (given in brackets) they can vary from lab to lab. Usually the top end of free t3 is around 6.8 and you are nowhere near the top third yet.

Your doctor should be aiming for those numbers not just anywhere in range. A lot are clueless. Thyroid U.K. admin have a copy of an article in pulse an 6 where Dr Toft an eminent endocrinologist (now retired) states those numbers. You could show it to your GP and say you need an increase as you are nowhere near the recommended numbers yet. Thyroid U.K. is recommended by NHS choices as a support for those with thyroid disorder so you should mention that if you don’t get a positive response. Hopefully the GP will welcome the advice of Toft and get you optimised so you feel well again . Increases are usually 25mcg and only be every 6-8 weeks to allow the hormones to reach their maximum capacity and a new blood test is done before a new dose is initiated if you are not at those numbers. Any faster and you can overshoot the mark and end up over medicated .

TSH is thyroid stimulating hormone that tells your thyroid how much thyroid hormones to make. If it is high you are hypothyroid as you are not making enough for health and we must take the replacement hormones because our thyroid can no longer make them or enough of them. Once we get enough the TSH will drop as it’s happy with the level of hormones in the blood. The TSH feedback loop remains even though the thyroid no longer works properly and can’t respond to the elevated TSH. We must take the hormones because we can’t make them any more

T3 is an active thyroid hormone

T4 is a pro hormone that is converted into t3 so it can be used by the body

Free means how much is circulating in the blood steam and is available for use in the tissues.

Hope that helps a bit in understanding your results.

Florah profile image
Florah in reply to TSH110

TSH110 thank you

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