Hypo/ Hyper? : I have been hypo for many years... - Thyroid UK

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Hypo/ Hyper?

Neon65 profile image
18 Replies

I have been hypo for many years, all of a sudden my bloods have changed to Hyper.. Apart from weight lost which is great and needed, feel awful..tired, aches and pains, headaches, itching, no energy.Doctor advised to stay on my usual 100mg, my question is Why? has it changed and my Doctor not altering meds levels.

My blood levels apart from Thyroid , have been all been, above range lately..

This is all very strange, and my memory declining badly, so can't retain info much.

Any help appreciated..thanks

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Neon65 profile image
Neon65
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18 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Could you share with us the actual results with reference ranges for each test please?

What are your latest results for ferritin, folate, B12 & D3?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Do you always get the same brand Levo?

Neon65 profile image
Neon65 in reply to Jaydee1507

I think I get same Thyroid meds, I'll check. Don't think I had bloods done early or on a 24 hr clear...I take my meds at between 11pm and midnight...

Jaydee1507 profile image
Jaydee1507Administrator in reply to Neon65

We could help you further if you gave us the information asked for.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

You do need to leave 24 hours between last Levo and blood test or you will get a false high FT4 result and your GP may reduce your dose which does seem to have happened.

Neon65 profile image
Neon65 in reply to Jaydee1507

Thanks for reply, I don't think bloods were done early am and not sure about 24hrs in-between dose... only sent me back to results, which I have put onto slow Dragons link.

greygoose profile image
greygoose

Do you have Hashi's? That's the most usual cause.

Neon65 profile image
Neon65 in reply to greygoose

Hi, Never get told anything, only either to low or high..or satisfactory...

I'm more confused now than I ever was, spent most of my last few days sleeping..

greygoose profile image
greygoose in reply to Neon65

They don't tell you much, it's true. This could be for several reasons: either they think too much information would confuse you, or that you're not capable of understanding (doctors think we're all idiots!) or they don't really understand it/have the knowledge themselves. So, one has to ask questions.

You just said to SlowDragon : I have got my blood tests, but still don't understand them much really.

Well, we wouldn't expect you to understand them at this stage. But, why don't you post them here - the name of the test, the result and the range (numbers in brackets after the result). Then we'll be able to explain them to you, and answer any questions you have. :)

Neon65 profile image
Neon65 in reply to greygoose

Hi, put results onto , Slow Dragons...😊

greygoose profile image
greygoose in reply to Neon65

OK, so you're saying that you've changed to 'hyper' because of the low TSH, is that correct?

Well, the TSH result is the least important of the three. Once on thyroid hormone replacement, and the TSH gets below 1, it dosn't tell you much at all. The most important number is the FT3 and yours is pretty low, so you couldn't possibly be 'hyper' - or, more correctly, over-medicated.

So, with that low FT3, your symptoms are more likely to be due to under-medication - or poor conversion - rather than anything else.

I realise that all this is a bit much to take in in one go, but if you have any specific questions, please do ask them. We'll be happy to try and answer them. :)

Neon65 profile image
Neon65 in reply to greygoose

What should I ask my doctor next to do?

greygoose profile image
greygoose in reply to Neon65

Well, test your FT4 for a start - if you're sure he hasn't already done that. Then that will tell you why your FT3 is low. Also, ask him to test your antibodies and nutrients, as SlowDragon has said.

SlowDragon profile image
SlowDragonAdministrator

was test done early morning, ideally around 9am latest and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you taking

When were vitamin levels last tested

First thing is, do you have any actual blood test results?

if not will need to get hold of copies. 

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

patients-association.org.uk...

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

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

 

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

Also both TPO and TG thyroid antibodies tested at least once 

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

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.

looking at previous posts it seems likely you have Hashimoto’s

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 and last dose levothyroxine 24 hours before 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

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 then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Only do private testing early Monday or Tuesday morning. 

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...

Neon65 profile image
Neon65 in reply to SlowDragon

Thank you so much for info, I find it a little overwhelming, and hard to understand. I hope to take this info and use it to help me get the answers I need. I have MCI, so get confused often... so I am a work in progress. I have a good Doctor but have never been referred to a specialist, as my doctor has said; he phoned, a college who, was a specialist and was told, nothing to change at present, this was a while back.

I would feel much better, if I seen a specialist, but unless it's life threatening or emergency, they won't see you.

I have got my blood tests, but still don't understand them much really.

Neon65 profile image
Neon65 in reply to Neon65

I know, I didn't have all tests done but these were the only ones that have came back...Serum TSH-{xaelv], below range 0.21- mluL ( 0..27-4.2)

Serum free Triodthronine level ( xaerq) 4.4 pmol/L (3.1- 6.8)

Polysymptomatic..

These were not done at 9am, also 24 hrs clear ? Not sure, as I take my meds around midnight..

SlowDragon profile image
SlowDragonAdministrator in reply to Neon65

No Ft4 test?

FT3: 4.4 pmol/l (Range 3.1 - 6.8)

Ft3 only 35.14% through range

Ft3 is LOW suggesting you are either not on high enough dose levothyroxine or have poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Most people when adequately treated will have Ft3 at least 60% through range minimum

Suggest you get vitamin D, folate, ferritin and B12 levels tested

For good conversion of Ft4 to Ft3 we need GOOD Vitamin Levels

approx how old are you

Low vitamin levels more common as we get older and when Ft3 is too low (as yours currently is)

As you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Examples of private test results

Medichecks

healthunlocked.com/search/p...

Blue Horizon

healthunlocked.com/search/p...

Neon65 profile image
Neon65 in reply to SlowDragon

Thank you!I am 58, but have had raised bloods in the inflamation sectors.. x5 came back above range but doctor doesn't seem worried.. Platelet count...above range

Red blood count... above range

Monotype...above range

Eosinophil count.. above range

Basophhil... above range.

SlowDragon profile image
SlowDragonAdministrator in reply to Neon65

Well without TSH, Ft4 and Ft3 tested together at same time, nether you nor your Doctor can understand what’s going on

Ft4 result will show if you are taking high enough dose levothyroxine

Ft3 result is too low ……so either not on high enough dose levothyroxine …..or poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Poor conversion is common as we get older, the longer we have been on levothyroxine, especially post menopause.

Extremely common Ito need to supplement vitamin D, vitamin B complex continuously to maintain optimal vitamin levels

Test before starting any supplements and retest at least once year

Next step….

Get FULL thyroid TSH, Ft4 and Ft3 and including thyroid antibodies and all four vitamins tested

Extremely unlikely to get all these on NHS, so test privately

Test early Monday or Tuesday morning, last dose levothyroxine 24 hours before test

Medichecks cheapest for thyroid including thyroid antibodies and all four vitamins

currently on offer at £68

medichecks.com/products/adv...

Are you currently taking any vitamin supplements?

Neon65 profile image
Neon65 in reply to SlowDragon

Thank again, for info..I will try and sort privately if doctor can't do this for me.

Not taking any supplements, as there's so many different ones I feel over whelmed, when I look: would appreciate any input on this if possible. I have numerous health problem, Angina, Diabetic 2 diet controlled too. I'm also on stating now for high cholesterol. So not really sure what supplements to take...

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