Reaction thyroxine or to much: Hi everyone I've... - Thyroid UK

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Reaction thyroxine or to much

Caldereta profile image
46 Replies

Hi everyone I've recently joined nice to meet you all, I have read lots of posts all very interesting and very supportive,sadly I have have a GP that top priority is fob off,I have suffered many health issues sepsis luckyto be alive went into renial failure always had ibs which after the sepsis got worse 2 nervous breakdowns in my younger years 2 bouts of cancer,anorexia diverticulitis, gall baller removal appendix 3 miscarriages.

A little about me hey still here fighting on to a better me I've had a under active thyroid for some 19 years during that time my levels were up and down so increases were made I was never well caught everything going started with bone

Pain ,exrays showed i had osteo penia and bone density deterioration.

I took things into my own hands as I believed my symptoms were linked to my thyroid i took my results from my doctor and went to see a thyroid specialist,it was totally different my gp said they were in range.

The specialist advised 3 monthly check ,my surgery only honoured this 2 times,

My vitamin d was low and bone clinic advised to take 1 effervescent vitamin d per day then test later,they really upset my stomach, so I was advised to stop them no other alternative was offered or follow up test done I was told to leave them off.

Further on I have recently had my thyroxine changed like many on here from teva to astro I have experienced burning skin pins and needles legs arms tingling lips,joint pain pulsating hands which go very red,can stand any form of heat irritable, short tempered dizzy vertigo balance.

Sweating in the night bowel changes .

Wind heartburn stomach cramps which i strongly believe is liked to my thyroid.

At present I am awaiting bloods to come back tomorrow.

Full mot I have a wonderful chemist whom asked my symptoms and said sounds like a allergic reaction to new meds,I did leave the astro off for2 days marked improvement no burning skin or joint pain ,balance not too good,but no blurred vision and minimal tingling felt much better I used some 25mg chemist said take 4 and see head a bit woozy and balance not too good tinnitus back bit hypo can't sleep.

I was informed by the chemist that at 66 the dose is usually less ?

He said maybe you have too much thyroxine.

Can anyone please confirm that the levothyroxine astro immediately desolve instantly in your mouth never known this.

Thankyou for your time.

Vivien.

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Caldereta
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Many of your symptoms suggest low vitamin levels, extremely common when under medicated

How much levothyroxine are you currently taking

What vitamin supplements are you currently taking

First step is to get FULL thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Presumably you have Hashimoto’s?

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Caldereta profile image
Caldereta in reply to SlowDragon

Good morning,thankyou for your prompt response,I don't have hashimotos as far as I no.In the blood test the doctors only doing the T4.

B12 foliate Ferrin shes added suspected diabetes.

No vitamin D i don't take any supplements as they seem to give me a upset tummy,I will have to get what you suggested done as I believe my Gp wouldn't she was very sarcastic when she knew I had gone private 4 years ago saying the private sector are only after the money,and as good said they will tell you anything to get money.

Today the bloods should be ready so I can forward result.

Thankyou very much for all the valuable information.

Many kind regards vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

When you had private testing previously were TPO and Thyroglobulin antibodies tested?

Recommend you get full private testing and come back with new post once you get results

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Good to see you are getting test results

Come back with new post once you get results

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, so it’s likely that you do have Hashimoto’s.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Look at all previous blood tests in past, especially around original diagnosis, see if you had thyroid antibodies tested

Caldereta profile image
Caldereta in reply to SlowDragon

Sorry forgot to add l00mg of levothyroxine astro I am some what confused as what the T3 T4 and other information to do with the thyroid ,were you suggesting I need a increase as one doctor once said low function means you have to much

Levothyroxine??

Some years ago my thyroid was up and down they couldn't stabilise it and asked many times your sure your taking your thyroxine medication.

Sure I was.!!!

Thanks again hope this helps.

Kind regards vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Just testing TSH is completely inadequate

You ALWAYS need Ft4 and Ft3 tested....but NHS rarely test

Being under medicated results in very low vitamin levels as direct result

As you are lactose intolerant and on levothyroxine it’s common to need higher dose levothyroxine

Do you have any recent thyroid or vitamin results?

Recommend getting FULL Thyroid And vitamin testing done privately after minimum of 6-8 weeks back on Teva brand of levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Some years ago my thyroid was up and down they couldn't stabilise it and asked many times your sure your taking your thyroxine medication

This suggests autoimmune thyroid disease (Hashimoto’s)

Hashimoto’s frequently starts with swinging levels and eventually becomes more hypothyroid and more stable over time

Lactose intolerance very common with Hashimoto’s too

CatsofCatford profile image
CatsofCatford

I had a similar kind of reaction several years ago when I was changed from Teva to another brand. Tingling, numbness and shooting hot sensations up my legs. I was actually hospitalised with a suspected stroke! But this was later ruled out and it was deemed ‘a possible thyroid episode’. I now believe that it was due to the fact that I’m lactose intolerant (I didn’t know at the time) and as Teva is lactose free ... I believe nearly all the rest are not ... the change of tablet probably meant my body wasn’t able to absorb as much T4 leading to a sudden drop, as well as setting off an allergy like response in my body. I wanted to let you know in case it throws some light on what happened to you but also, if you haven’t done so already, you my might want to consider cutting out dairy foods for your general health and well-being. Honestly, I would never have believed I had a problem ... I loved dairy! ... but cutting dairy products out has made a huge difference to how I feel and now whenever I have the tiniest bit by accident I have a HUGE reaction. All the best ☺️

Caldereta profile image
Caldereta in reply to CatsofCatford

Hi thankyou for your valued input well yes I've been on lactose free milk for at least 4 years now.I had a pain like the worst ever that came from under my right rib up my back through to my left breast I almost vomited pain was so bad started slow and built to a severe pain I've had this before but not so severe this knock me off my feet and lasted longer.

It like severe cramp type pain.

My bloods are to be looked at today but only doing the T4 vitamin B12 and others.

I do hope your better now .

Many kind regards viv.

SlowDragon profile image
SlowDragonAdministrator

Make sure to always stick to same brand of levothyroxine

Frequently necessary to try several different pharmacies

Small independent pharmacies are often more helpful

Obviously you need to get lactose free levothyroxine

How low was vitamin D?

Caldereta profile image
Caldereta in reply to SlowDragon

Hi again the vitamin D was quite some years ago now, could ask the Gp .Regards vivien

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Vitamin D test

£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/

vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Caldereta profile image
Caldereta in reply to SlowDragon

Hi many thanks for your support I could only see she did T4,I have just rang Gp and they informed the tests came back one yesterday and one today doctor has to look yet so waiting,the private testing is there a company that do all from vitamins thyroxine levels antibodies?What are the correct levels of the thyroid readings please?

Kind regards vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

I gave you the links to the most popular tests in my very first reply above

Medichecks is usually cheapest

TSH, Ft4, Ft3, both thyroid antibodies, vitamin D, folate, ferritin and B12 - £79

Often on offer on Thursdays ....but not this week

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If taking any supplements that contain biotin you must stop these a week before ALL BLOOD TESTS as biotin can falsely affect test results

If taking any iron supplements stop these a week before testing ferritin levels

All private tests should be done early Monday or Tuesday morning and then post back via tracked 24 hour postal service

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Optimal results

TSH - under 2 and most people when adequately treated on levothyroxine will have TSH under 1

Ft4 - at least 60-70% through range

Ft3 - at least 50-60% through range

TPO antibodies under 34 - negative

TG antibodies under 115 - negative

Vitamin D at least around 80nmol and around 100nmol maybe better

Active B12 at least over 70

Serum B12 at least over 500

Folate and ferritin at least half way through range

If Ft4 and Ft3 are low = under medicated

If Ft4 is high and Ft3 is low = poor conversion

Low Ft3 tends to lower vitamin levels

Caldereta profile image
Caldereta in reply to SlowDragon

Hi and many thanks again,here what the doctor is testing for.Amylase,vitamin B12 and foliate bone.

ca.cca Alb.phos.ALP blood picture to include fbc and diff.

CRP, Erythrocyte sedimentation rate,serum Electrophoresis ferritin.

Random glucose Gamma Glutamyl transferase HbAlC-suspected diabetes.

Hope this helps .

Kind regards vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Relevant tests

B12

Folate

Not included and essential to test

TSH

Ft3

Ft4

Thyroid antibodies (if not been tested previously)

Vitamin D

Ferritin

Caldereta profile image
Caldereta in reply to SlowDragon

Does say vitamin b12 and folate.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

I know ...I put them at top of my reply

Caldereta profile image
Caldereta in reply to SlowDragon

And I don't no if immunoglobulins are the immune you speak of?

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

No

webmd.com/a-to-z-guides/imm...

Need thyroid antibodies tested. Might have been tested when first diagnosed

Caldereta profile image
Caldereta in reply to SlowDragon

I no vitamin D hasn't been added but will ask.

jgelliss profile image
jgelliss in reply to SlowDragon

Thank you for this very valuable information. It's most appreciated.

Caldereta profile image
Caldereta in reply to Caldereta

Hi here are the thyroid tests now which you asked to send,I have asked for she is doing me the antibody vitamin D in 2 weeks as I do have to increase my dose no wonder I felt awful.There was something else in the electrolytes where she said was dry,but reapting with the thyroid function and others I've mentioned.

Stimulating hormones.57 to4.57

T4 16

Increase 25 to be retested in 2 weeks.

Thanks vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Stimulating hormones.57 to4.57

T4 16

Increase 25 to be retested in 2 weeks.

Stimulating hormones.57 to4.57”

This is TSH (0.57-4.57) ....there should be a number in front of these ranges

Similarly

T4 16

this should have range after it in brackets eg (12-22)

Increase 25 to be retested in 2 weeks.”

This might mean increase dose of levothyroxine by 25mcg.....and retest

But if increasing dose bloods should be retested after 6-8 weeks, 2 weeks is too soon

Can you add a photo of results ?

Caldereta profile image
Caldereta in reply to SlowDragon

Hi thanks she gave me them over the phone,but the practice nurse is calling me on Tuesday to do the very overdue checks as I have complained,so will see if she will give them to me I will explain I need the full description. I totally agree 2 weeks is too soon I live and worked in Spain and that when they retest.

I was researching teva been on them 20 years ,but my thyroid at the time was not right it ties up with those dates of recall I was asked many times am I taking my medication,on what I can find their was incificent dose in them I have more to do as yet.

I wasn't informed of the recall .

Cheers vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

So you mean you live and work in Spain now ...or in past?

Ask for printed copies of recent test results

Caldereta profile image
Caldereta in reply to SlowDragon

Hi no I live in the UK since 210 .

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

So you should be able to get online access to your medical records and blood test results

Ask to be registered 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. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

Caldereta profile image
Caldereta in reply to SlowDragon

Ok will do funny last night since the increase my neck glands feel painful and tonsills plus a intermittent cough and the tingling in my hands plus can't sleep the increase has made this worse the sleeping but the glands and the throat issue has subsided this morning till I took thyroxine this morning and the pressure feeling in my glands ,to top it all they have sent the wrong dose.I give up I am doing the private testing for all

You mentioned.

Many thanks.viv

Caldereta profile image
Caldereta

Hi I've just found these readings don't no whether they help?Also found result of glucose test which said moderate hyperkalaemia to retest in 2 months not tested,also at 6 months not done.

Vitamin d should had been followed up as was requested not done as upset tummy told to leave them off.

So none for over 3 years no checks.

Regards vivien

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Suggest you get FULL thyroid and vitamin testing done privately

Alternatively start with just Vitamin D test ....very easy.

Only requires 4 drops of blood

Vitamin D NHS postal kit

vitamindtest.org.uk

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

Come back with new post once you get results

Caldereta profile image
Caldereta

Ok thanks.

SlowDragon profile image
SlowDragonAdministrator

Only do any thyroid tests a minimum of 6-8 weeks after any dose change or brand change in levothyroxine

No point testing until then

Extremely common to feel odd when dose is increased. Rest of the endocrine system has to catch up

It typically takes 3-6 months to adjust after a dose increase, but it’s realistic to test after 6-8 weeks of unchanging brand and dose

Low B vitamins can get worse as dose is increased

Should improve, but if not get B12, folate tested

Low B vitamins cause pins and needles and tinnitus

Get new prescription for Teva on Monday

Have note added to all future prescriptions Teva ONLY

Caldereta profile image
Caldereta in reply to SlowDragon

The doc did do B12 and foliate she said only a discrepancy on the electrolytes something about one is showing dry in the urea.Just walked upstairs heart is pounding breathless will try to get teva.

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

You are legally entitled to copies of of test results

A GP will say any results “within range” are fine

We need optimal vitamin levels

B12 range is typically 180-670

If your B12 result was 185 GP would say it’s fine

On levothyroxine we recommend that B12 is over 500

Many thyroid patients start to have symptoms if B12 is under 400

Same with folate

Typically range is 3.5- 20 or 4-60

We are looking for results at least half ways through range

Caldereta profile image
Caldereta in reply to SlowDragon

Hi thanks again,Well they sent wrong dose i would change doctors but where I live not on reviewing surgeries best one says out of range at 2 miles away rang up the surgery to tell them they've sent 50mg which I never have shes a locum AGAIN says it all but will ask for those results ,the receptionist said you had a 100mg in December yes but allergic to thatand now I'm due again and sent 50s different make again .

So talked to the chemist because they are very good and more knowledge, I had to call tomorrow to the pharmacist who I've been dealing with to see if he can get teva,the one they've now changed for astro.

Dam nightmare.

Cheers vivien.

Caldereta profile image
Caldereta in reply to SlowDragon

Hi I getting the print off of results today so will send you,I haven't been well my sinuses and the glands in my neck are painful tum a bit upset legs shake,the doc says viral infection all my gums and teeth ache too.So I will send them over to you ASAP she is doing my thyroid plus antibodies and vit d next Friday and I know its too soon as you say I will see if I can get that thyroid test later and nothing to eat and no thyroid meds till I come back.

They have never done the thyroid test that way ,its been anytime when I've eaten and had my meds so now you made me aware I will endeavour to do it that way.

Regards vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

Suggest you write new post when you get results

That way more people read it

Caldereta profile image
Caldereta in reply to SlowDragon

Having issues sending i couldnt get the report sent says thyroid function tsh&t4

TSH 4.57 MU/L O.1-50

Free T4 16 PMO/ 12-23

FERRITIN 58 NG/ML 10-120

GLUCOSE 6.3 MM0/L4.0-7.8 SAYS BORDERLINE SAME SINCE 2013 TEST.

UREA 8.3 MMOL/L2.5-7.8

CREATINIE 8.3 UMOL/L

IMMUNOGLOBINS G GL 11.7 G/L6.21 -17.02

1.89 GL 0.71-3.79

M GL 1.9 G/L 041-2.02

B12 376 PG/ML200-900

HOPE THIS HELPS.

REGARDS VIVIEN.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

On levothyroxine dose should be increased slowly upwards in 25mcg steps until TSH is UNDER 2

Ft4 is only 36% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

When on correct dose Ft4 is typically 60-80% through range

So your results show you are under medicated

What dose levothyroxine are you currently taking

When was dose last increased

Ferritin slightly low.

Look at increasing iron rich foods in diet

You need vitamin D, folate and B12 tested

Caldereta profile image
Caldereta in reply to SlowDragon

Thankyou I was taking 100mg hasn't been increase for about 5 years The b12 seemed ok on checking just the other tests to do the urea retest vitD and to see if its immune linked my thyroid.

Regards vivien.

SlowDragon profile image
SlowDragonAdministrator in reply to Caldereta

What's the B12 result and range

Caldereta profile image
Caldereta in reply to SlowDragon

Vitamin B12 376 pg/mL 200-900

Caldereta profile image
Caldereta in reply to SlowDragon

Hi a lot to tell not be well at all as you know having issues with the Gp ,any how I was told I had a viral infection funny since the change from teva symptoms got worse on astro,well a trip to A&E advised a awful experience my head was funny dizziness hypo at times sweating nausea hot temperature in the morning low dry mouth ,bloods were done all good ,urine ok sinuses and gum pain and swollen.The tests I said that doctor did I was told today,by a personal visit from the owner of the surgery that my levels were ok I said your other doctor said they were low hence the increase ,he said different doctors have different thoughts on the symptoms of a patient.

Because I've blown big time he now doing personal mmm,he's doing vit d and in 2 months of 125mg see what is going on hes doing the immune you spoke of liver antibodies as well ,cortisol levels.

Its strange I'm hypo then rapid heart beat my head goes funny im cold one time then hot anxiety short tempered.

Thanks viv

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