Feeling really fed up : I was diagnosed with... - Thyroid UK

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Feeling really fed up

Jennymiddle profile image
9 Replies

I was diagnosed with underacrive thyroid last October time, and since then I have felt so unwell. Every time I have my bloods taken there is a problem with one of them. Last time it was my liver, which thankfully it has come back down and this time it’s potassium levels high so need to repeat on Monday. I’m so worried every time I have my bloods now now for what else might arise. Has anyone else had problems with these sort of blood test. It has only been happening since I got diagnosed. All my thyroid levels are within range, but still have symptoms of weight gain and tiredness but I think that’s partly my fault as I’ve lost interest in the gym and going out. I’m so worried that my kidneys are going to pack up ( over dramatic I know ) the level was 5.5 which was out of range (5.3). Is this all part of this horrible condition or something else.

Thank you

Jenny

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9 Replies
SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

It's pretty common for other things like liver and kidney tests to be slightly out of range while still getting on correct dose of Levothyroxine

Dose of Levothyroxine should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Jennymiddle profile image
Jennymiddle in reply to SlowDragon

Hi thank you so much for your helpful reply. I’m on 75mcg at the minute. My results are as follows. The lab didn’t test antibodies as they tested in November so thought there was no need.

Serum vit B12 505 no/L ( 197.0-771.0)

Serum ferritin 109 ug/l (30.0-150.0)

Serum folate 9.8 (>3.9)

TSH 1.1 mul (0.27-4.2)

Serum total 25- hydroxyl vit D 75 nmo/l (51.0)

That’s all I have apart from liver and kidney (potassium) which was 5.5

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Jennymiddle

Vitamins are pretty good

I think your antibodies were high in October (though there's no range listed on test results)

High antibodies is Hashimoto's also called autoimmune thyroid disease

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly.

Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Your TSH is quite good, but without testing FT4 and FT3 it's impossible to say if you are adequately medicated

Suggest you get private blood test for TSH, FT4 and FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid or Blue Horizon are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Jennymiddle profile image
Jennymiddle in reply to SlowDragon

Thanks very much for the very useful info. I do try and to be gluten free as possible. I have meals delivered on a weekly basis which are all gluten free. Can I ask if I get private blood test done, what will be different to what the doctor tells me ? And can I actually go to the doctor with the results if they are different ?

Thank you

knitwitty profile image
knitwitty

I don't know if this will reassure you but I had some blood tests a while back and my doctor called me at home and told me to go straight to A&E because my Potassium was high, and no it couldn't't wait until the morning.

I sat in A&E for 4 hours waiting to have a repeat blood test, it turned out that the person drawing the blood at my doctors had not flushed out the needle by doing other blood tests first and that the preservative within the syringe contained potassium, so it was completely wasted journey and a waste of everyones time in A&E because of course they had to run heart tests etc..

It could be something as simple as this.

Jennymiddle profile image
Jennymiddle in reply to knitwitty

Thank you so much. I did read that could happen. It’s just me worriying before I get the facts as usual. Since I got diagnosed it’s sent me over the top with any little thing. I need to get a grip I think. Thanks very much for reassuring me.

Jennymiddle profile image
Jennymiddle

Hi I thought I did put the reference range down. It’s all the info I have , I can look on line and this is all it says.

Thank you

bonjon10809 profile image
bonjon10809

Jenny- When your thyroid is out of whack it can make ANY blood test appear to be at a dangerous level but it's really NOT. Prior to my diagnosis with Hyper & Graves, my tests showed kidney failure, liver failure, blood cell counts indicating leukemia, and NONE of these were true- it's just that your thyroid controls 16 major metabolic systems in your body and if it's abnormal symptoms are not apparent to you, it raises other flags.

This happened to me- I thought it was normal that at age 40 I was a size 4, ate everything in sight, slept no more than 3-4 hours a night, worked 12-14 hours a day. Unbeknownst to me, it runs in my father's family, and he had most of his thyroid removed in the late 40's and never bothered to mention it.

Don't worry about those other test results, mine took 6-8 months to return to completely normal, long after the actual thyroid tests turned around. Also, You may benefit from anti-depressants but beware of Prozac- I gained a whole bunch of weight that took a year to lose. And Levothyroxine and it's other generics all made me itch uncontrollably, I can only take brand name Synthroid.

Jennymiddle profile image
Jennymiddle in reply to bonjon10809

Thank you so much for putting my mind at rest. Deep down i know this as its only been flagged up since been diagnosed. I do suffer from anxioty and get help from a private counsellor which helps. The doctor did ask if i wanted tablets but i hate taking any tablets levo is the only one i take. Plus i try and help myself in other ways. Sometimes all i need is reasurance and you have given me that.

Thank you so much

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