thyroid symptoms

[leedsy30]

hi, I have had hypothyroidism since 2008. Recently my thyroid blood result showed hyperthyroidism. I didn’t know this could happen. I have felt really unwell for a few months now. I feel totally exhausted, pain all over my body, really bad pain in my neck and head and blurred vision. My doctor said he’d do another blood test after 2 months. Should I be worried. I also have fibromyalgia, Sjorgrens syndrome, spondylitis neck and lumbar, osteoarthritis in various joints.

[SeasideSusie Remembering]

Leedsy30

Recently my thyroid blood result showed hyperthyroidism.

Would you be able to expand on this for us please.

What was tested? TSH only? Or TSH, FT4 and FT3?

Can you post the results with their reference ranges please (ranges vary from lab to lab so we need the ranges that came with your results).

What thyroid meds do you take?

When did you take your last dose before the test?

We always advise, when doing thyroid tests:

* Test no later than 9am

* Nothing but water before the test (certain foods and drink can affect TSH)

* Last dose of Levo 24 hours before test and last dose of NDT or T3 8-12 hours before the test (splitting dose into 2 or 3 the day before), this avoids false high or false low thyroid hormone levels (FT4 andFT3).

* No biotin, B Complex or any supplement containing biotin for 3-7 days before the test.

Have you tested key nutrients -Vit D, B12, Folate, Ferritin?

[tattybogle]

Hi , usually when a GP say's hyperthyroid to a patient taking Levo (are you ?) this is just a GP using lazy medical shorthand . When the blood test to monitor Levo dose shows the TSH is a bit low , or the fT4 is a bit high. they say "hyperthyroid" but in a patient taking Levo it means 'over medicated'.

True "hyperthyroid" is when the thyroid itself is continually over producing thyroid hormone (T4/T3) .. "over medication " is just "taking a bit too much T4" (Levo) .

It is very unusual (but not impossible) for someone who is hypothyroid to switch over to true hyperthyroid.... but in most cases of people coming here saying "my Doctor said i've gone hyper now " it is just a misunderstanding of lazy terminology.

To know what is actually going on, you need to get hold of your actual blood tests TSH / fT4 . (fT3 if done) results AND [lab range] ie fT4 19 [12-22] Ask reception at GP to give you a printout of your latest thyroid function test results (~ you have a right to see them as long as a GP has seen them first)

put them up here , and give us bit more history ie diagnosis/ what dose Levo you take, if any / and any dose changes... and we will be able to help you understand what is going on .

[leedsy30 in reply to tattybogle]

my thyroid blood results are TSH 0.33 mu/l

T4 21.1 pmol/L

[tattybogle in reply to leedsy30]

Do you have the ranges ?

[leedsy30 in reply to tattybogle]

TSH Range 0.55-4.78 T4 range 9.5-22.7

[tattybogle in reply to leedsy30]

ok .. do you take Levothyroxine ?

[leedsy30 in reply to tattybogle]

yes 125mcg

[tattybogle in reply to leedsy30]

ok ..... those are not true hyperthyroid results ... they may suggest slight overmedication IF you have symptoms of overmedication... some people would feel good with those results on levo , but for some people that fT4 might be a little too high for them (and consequently the TSH a little bit low) .

Your symptoms could be a sign that your dose of Levo is a little bit too high , but it's hard to be sure if that is the reason for them or not .

How do these result compare to any previous results on 125mcg ? (is this fT4 significantly higher ? /is this TSH significantly lower ? )

How long have you been on 125mcg for ?

What dose were you taking previously ?

Do you have any blood result from the previous dose ?

[leedsy30 in reply to tattybogle]

last year the TSH 0.62 T4 19

I’ve been on levothyroxin 125 mcg since 2008

[tattybogle in reply to leedsy30]

ok . so not much different.

if you previously felt ok with these sort of levels then it's not an obvious case of overmedication causing symptoms , which might be why GP suggest to wait a bit longer before changing dose.

I became slightly overmedicated after being ok on same dose for years, and it did make me feel really lousy . muscles hurting , nasty pain in kidney area, crashing with exhaustion, really jumpy and tense, bladder constantly tense and uncomfortable ~ lots of odd things that gradually crept up over several months that i didn't associate with too much Levo.

My thyroid result weren't significantly different to previous .. my 'usual' TSH had been about 0.05 ish ,, but it had fallen to 0.018 . my fT4 was a little over the range but not much , and it had been over before and not made me feel over medicated .

But a SLIGHT reduction from 125mcg to 112.5mcg improved my symptoms no end . the bladder symptoms improved within a couple of weeks, but the first 4/5 weeks generally felt rubbish and a bit undermediated / hypo , but after that Symptms improved consistently , some took a few weeks , some a few months.

A while later the GP insisted i reduce further to 100mcg which was a mistake as it left me very undermedicated and we had to put the dose back to 112.5 so i could function .

You could discuss slightly lowering Levo dose with your GP if you want to find out if that improves your symptoms . but i wouldn't recommend reducing by more than 12.5mcg at first. ( they can prescribe alternate dosing 125 one day/ 100 the next to get 112.5mcg ,, or you can cut a 25mcg in half if you'd rather take the same each day)

But don't worry .. you are not definitely "hyperthyroid" in the real sense of the word. So don't go looking up treatments for hyperthyroidism.

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

ESSENTIAL to test TSH, Ft4 and Ft3 together……but virtually impossible to get Ft3 tested on NHS these days

Was test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

For levothyroxine to work well we need OPTIMAL vitamin levels

Very common on levothyroxine to develop vitamin deficiencies.

Lower vitamin levels are more common as we get older too

When were vitamin D, folate, B12 and ferritin last tested

If tested in last 6 months….please add results

If not been tested recently…..Request GP test ….now

Or test privately

presumably you have autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies

Have you had thyroid antibodies tested at any previous test results

Assuming you have Hashimoto’s, have you had coeliac blood test done

If not get tested via GP …..If not already on strictly gluten free diet

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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 (no antibodies)

monitormyhealth.org.uk/full...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[SlowDragon Administrator]

Levothyroxine (Ft4) is inactive and has to be converted to active hormone (Ft3)

For good conversion of Ft4 to Ft3 we MUST have GOOD vitamin levels

To see how well you are currently converting Ft4 to Ft3 it’s essential to test TSH, Ft4 and Ft3 together. Testing early morning and last dose levothyroxine 24 hours before test

Testing vitamins….if vitamins are low (extremely common) then improving low vitamin levels frequently increases conversion rate

Having already been diagnosed with one autoimmune disease (Sjorgrens) makes it virtually guaranteed your hypothyroidism is autoimmune thyroid disease….Hashimoto’s

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.

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)

what vitamin supplements are you currently taking…..if any?

[pennyannie]

Hello Leedsy and welcome to the forum :

You are correct in your thinking as once diagnosed hypothyroid and on thyroid hormone replacement you can't become hyper but your doctor is just looking at your TSH reading when s/he should be looking at your Free T3 and Free T4 readings in conjunction with the TSH result.

Your T4 is ' in range ' and your TSH below range which often happens once on any form of thyroid hormone replacement as you are manually taking your thyroid hormones and the TSH needing to signal take more or less hormone replacement becomes somewhat redundant.

However you are dealing with a lot of pain and wonder if you are struggling to convert the T4 into T3 which is the active hormone that runs all our bodily functions.

T4 is a storage hormone and needs to be converted in the body into T3 the active hormone that runs the body.

We generally feel at our best when our TSH is low in the range -

( I'm in the TSH @ 0.01 club - as are many forum members ) - none of whom are hyper and very definitely hypo !!!!!!

and our T4 up in the top quadrant of its range as this should in theory convert to a good level of T3 at around a 1/4 - T3/T4 ratio - with T3 said to be around 4 times more powerful than T4.

One's ability to convert well the T4 into T3 can be compromised due to non optimal vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D and down regulation of T4 into T3 can also be caused by inflammation, antibodies and any physiological stress ( emotional or physical ) dieting, depression and ageing.

Going by what you say above I do think we need a full thyroid function test for all of the above and if your doctor can't oblige there are private blood test companies who can - and believe between them Medichecks and Blue Horizon cover near enough the whole country and offer a nurse home visit to draw your blood.

So just pop across to the Thyroid UK website who are the charity who support this forum where you find all the above information and much more on all things thyroid - thyroiduk.org

There is more than 1 thyroid hormone replacement option - there is also T3 - Liothyronine and Natural Desiccated Thyroid both of which were readily available from your primary care provider until around 20 odd years ago when they were actively ' not encouraged ' probably due to costs but which are still available through an NHS endocrinologist but likely dependant on local CCG/ICB restrictions of finances available rather than on patient medical need.

Thyroid UK also holds a patient recommended list of sympathetic, recommended specialist and endocrinologists both NHS and private so it might be useful to see if there is anyone listed you miht like to o to for a second opinion and you need to email admin @ Thyroid uk for the details.

[leedsy30]

I take vitamins C, D3, probiotic, omega 3,

[SlowDragon Administrator in reply to leedsy30]

when do you take your levothyroxine

Which brand of levothyroxine is its

Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after and no other medications or supplements within 2 hours

Vitamin D tablets need to be at least 4 hours away from levothyroxine

How much vitamin D are you currently taking

Come back with new post once you get vitamin results

[leedsy30 in reply to SlowDragon]

seein gp Friday morning. Thanks for your advice

[SlowDragon Administrator in reply to leedsy30]

what’s your diet like

Are you vegetarian or vegan

Gluten free or dairy free

push to get vitamins tested

NHS always extremely reluctant to test vitamin D, but vitamin D deficiency is strongly linked to autoimmune diseases

NHS Guidelines on dose vitamin D required depending on what blood test results show

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

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

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. 

One spray = 1000iu

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

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator]

Fibromyalgia is frequently linked to low Ft3 levels

Few links about fibromyalgia and how it’s often undiagnosed or inadequately treated autoimmune thyroid disease

healthrising.org/blog/2019/...

thyroiduk.org/tuk/research/...

stopthethyroidmadness.com/f...

prohealth.com/library/new-t...

chriskresser.com/low-t3-syn...

holtorfmed.com/download/chr...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)