TSH 13.14

[Kareno77]

Hi, so after thyroid cancer and TT and lymph removal I had issues with my parathyroid not working so have been on high dose calcium, had a blood test Tuesday and parathyroid is now working so I’m weaning off the calcium but evidently my TSH level was 13.14 (T4 - 9.9) I’ve upped the levo to 150mg from 125 but the dr that rang was hesitant to get involved until I’d spoken with my surgeon which wasn’t going to happen over the weekend. What should my TSH be? I would have thought my GP Would have been in touch to go through all this what to expect etc but nothing. My blood work has been ok since coming out of hospital would my parathyroid now working cause issues with my TSH? I have no idea so some advice would be appreciated

[SlowDragon Administrator]

Typically on levothyroxine TSH should be under 2

Often after thyroid cancer endo will want TSH suppressed .....ie well under 1

Essential to take levothyroxine at least 4 hours away from calcium supplements

Which brand of levothyroxine are you currently taking

What time of day are you taking levothyroxine?

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

Ask GP to test vitamin levels NOW

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)

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 vitamins including folate (private blood draw required)

medichecks.com/products/thy...

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

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 or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

dropbox.com/s/6h3h0qi4eqwi6...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If 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

[Kareno77]

Hi, currently x2,25mg is Teva and the 100mg is accord. Taken at 7am

Take calcium and vit D four hours after levo take at 11am

Not taking any other meds and iron & B12 etc came back normal according to my GP?

I have blood tested done between 7am and 7;30am fortnightly at the moment.

I start RAI Dec and two days before go for thyrogen injections.

My GP has been no help at all I rather be back under the hospital as at least they no what they’re are doing, my GO just doesn’t seem interested that’s if you can even get through! I’ll update again once I have my blood results this week, thank you for the information

[SlowDragon Administrator in reply to Kareno77]

So ask to change the Teva for accord 50mcg

Never accept a verbal result, You are legally entitled to printed copies of your blood test results and ranges.

We need OPTIMAL vitamin levels

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

Come back with new post once you get B12, folate, ferritin and vitamin D results and ranges

[Kareno77 in reply to SlowDragon]

Thank you I have downloaded the NHS app so I will ask for full access to my blood results they always seem so cagey about giving you full results!

[SlowDragon Administrator in reply to Kareno77]

They absolutely loathe an informed patient

NHS will only test for and treat vitamin deficiencies, that’s not the same as optimal vitamin levels

Looking for vitamin D to be at least over 75nmol

Serum B12 over 500

Active B12 over 70 (NHS doesn’t test Active B12)

Folate at least half way through range

Ferritin at least half way through range, typically around 70

[Kareno77 in reply to SlowDragon]

Very grateful for the advice as always, thank you

[Batty1]

If you had thyroidectomy for thyroid cancer...TSH should be undetectable.

[Kareno77 in reply to Batty1]

Which is why I imagine they’ve increased my levothyroxine, I had another blood test this morning although I don’t think that will make much odds as only increased dose at the weekend. My consultant has arranged another blood test for 3 wks to give things time to settle on the new dose, two steps forward and one back...

[Batty1 in reply to Kareno77]

I tried to add on but lost my post...new tablet! Your having RAI so this explains why they are letting your TSH go high, are you following a lid diet before thyrogen injections or did I misunderstand your response to SD?

[Kareno77 in reply to Batty1]

😊 I start my LID diet on 24th Nov my RAI day is the 8th December and thyrogen injections on the 6&7 December, I had a total thyroidectomy and lymph removal on 1st October, this is the first time since it was removed that I’ve been made aware my TSH levels were high. Hopefully that makes sense x

[Batty1 in reply to Kareno77]

I had thyroidectomy for cancer in 2016... its not been a great ride and I'm now facing recurring thyroid cancer in my nodes, I did not have RAI in my first surgery and declined it this time and instead I opted to keep a tight watch on it. My endos flip flop so much I refuse to be the Guinea pig. I also developed psoriatic arthritis after my surgery been home bound for almost 2 years starting to turn a corner but the damage is done...agh!

I hope you have a good endo thats willing to work with you beyond the normal lab results once your all done with rai.

Yes, your post makes 100% sense!

[Kareno77 in reply to Batty1]

It’s definitely a scary minefield that I wouldn’t wish on anyone! You think papillary thyroid cancer on 98% cure rate I’ll be fine... then you start realising it’s not that simple! I don’t think there’s any right or wrong in terms of deciding your treatment path, you have to go with what feels right for you, I’ve kind of just been swept along by my consultant who from the moment I met him I trusted implicitly. My Gp surgery on the other hand!.... my parathyroid is now picking up which is good. I met my oncologist two weeks ago to discuss RAI and I sat in the waiting room with all these poor people with cancer and then realised they were probably thinking the same of me! That really hit home and the guy I saw was a little Blase and came across like it would come back and I’d probably need lifetime care which was a massive kick to the old moral. It’s certainly been a rollercoaster of a year and I won’t be sorry to see the back of it but then who knows what’s coming. Have everything crossed for you on your journey and hoping next year is a better one for all of us 😊

[Batty1 in reply to Kareno77]

Yes,very true I was Repeatedly told you have a low recurrence rate and honestly low recurrence rate is the kiss of death in terms of Healthcare once your labs fall into the range and your THYROGLOBIN and THYROGLOBIN ANTIBODIES come to a non-detectable range you're literally thrown away regardless of the issues your having.... Ihope your luckier!

I did belong to pap cancer group on FB and a lot of people had recurrence even with non-existent THYROGLOBIN levels, first I ever heard of this always told non-detectable was good but its really true because this is me recurrence without elevated THYROGLOBIN levels... strange.

Anyway, keep up the good fight and don't let people tell you at least its the good kind of cancer, its anything but good!