TSH still rising

[Lala62]

So I finally managed to get a blood test after a gap of 11 weeks and as I suspected my TSH has risen again to 9.6. See attached image showing TSH levels. I have one half of thyroid , other half removed last year in November due to thyroid cancer. GP has upped my levothyroxine today from 50 to 75 mcg and is contacting the endo dept at the hospital for advice. I knew I wasn’t feeling right . Fingers crossed for some help now .

[fuchsia-pink]

You poor thing, you must feel DREADFUL with such a high TSH!

75 mcg is still a pretty small dose of levo. Have you asked your GP for full thyroid testing - you should ask for free T4 and freeT3 along with TSH as a minimum, and if poss get your key nutrients tested as well - folate, ferritin, vit D and B12 - as your levo works best when these are all nice and high.

Good luck x

[Lala62 in reply to fuchsia-pink]

My T4 was fine , I did vitamins etc privately but the problem being I couldn’t draw enough blood.☹️

[shaws Administrator in reply to Lala62]

T4 is an inactive hormone and it has to convert to T3. T3 is the Active Thyroid Hormone and is needed in our millions of T3 receptor cells - brain and heart contain the most. I would say T3 is the 'engine' that drives our metabolism.

I find it surprising that they do not test the 'frees' until the patient is on a stable dose i.e. TSH around 1 or lower, FT4 and FT3 in the upper part of the ranges and relief of all clinical symptoms.

Also vitamins/minerals have to be optimal so ask GP to test B12, Vit D, iron, ferritin and folate. All have to be optimal.

If you are having blood drawn, make sure you are well hydrated a couple of days before. It also has to be at the very earliest (TSH is highest then) and it has to be a fasting test and allow a gap of 24 hours between your last dose of thyroid hormones and the test and take it afterwards. This method gives you the best results.

[Lala62 in reply to shaws]

Thank you so much for all the good advice 👍

[jimh111]

Often TSH has to be kept quite low for a period after thyroid cancer. I suggest you ask your doctor to check with the endocrinologist or cancer specialist how your TSH should be managed.

[Lala62 in reply to jimh111]

My Gp assured me today she would email the consultant at the hospital for advice but I’ll give it a week. If I don’t hear back I’ll chase up.

[jimh111 in reply to Lala62]

You may need some more levothyroxine to assist your half-thyroid but I would get your GP to establish whether they should be targetting a TSH due to your thyroid cancer. It's thought a high TSH could stimulate the cancer to return in some cases. This is a decision for a specialist as there are different types of thyroid cancer and different agressiveness.

[Hidden in reply to jimh111]

Hi jimh111, yes that was my understanding too. That it was common to go for near by complete suppression? Have I got that wrong?

[jimh111 in reply to Hidden]

No you haven't got it wrong. They used to target indefinite supression but now the need to keep TSH low can be graded and depending on the type and agressiveness of the cancer specialists are able to reduce the degree and duration of TSH supression. Each case needs individual attention, usually there is no need to keep TSH very low indefinitely.

[Lala62 in reply to jimh111]

Thank you for the advice. My GP has assured me she is contacting the consultant about my TSH. In addition I have sent my antibody results through as well which are high and out of range.

[tattybogle]

I really like that graph you have. It's so much easier on the brain to 'see' whats going on rather than having to work out all the numbers in your head.

[SlowDragon Administrator]

Levothyroxine doesn’t “top up” a struggling thyroid...it replaces it

So ....even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Essential to regularly retest vitamin D, folate, ferritin and B12 too ....especially if been under medicated

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 NOW

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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 ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[Lala62 in reply to SlowDragon]

Thank you for the information and advice. I did a Thriva full thyroid and vitamin test this week but unfortunately couldn’t draw enough blood to fill the specimen tube so I’ll have to reorder a new kit. ☹️However Gp tested my B12 , T4 , serum folate all normal. I’ll have to do the other vitamins again when my kit arrives.

Results this week from GP

T4 13.8 normal range 10.0-20.0

B12 224 normal range 211-911

Serum folate 8.10 normal range >4.0

[SlowDragon Administrator in reply to Lala62]

So B12 is extremely low

GP should do full testing for Pernicious Anaemia...highly likely to need B12 injections

Low B12 symptoms

b12deficiency.info/signs-an...

B12 injections during Covid crisis

pernicious-anaemia-society....

Don’t start any B vitamins until GP done Pernicious Anaemia test

Assuming you will get B12 injections

If you don’t come back to forum for advice

Folate on low side

Low folate....Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. Also helps maintain B12 between injections

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Are you vegetarian or vegan?

GP should be doing full iron panel test for anaemia too

Ask GP to do vitamin D test

Or get test here

vitamindtest.org.uk

No point doing thyroid test until 6-8 weeks on new increased dose of 75mcg levothyroxine

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

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

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)

[Lala62 in reply to SlowDragon]

I’m a little confused as B12 results from Gp and Thriva were in Normal range. My ferritin was 87 reported as optimal by Thriva. Serum folate 8.10 deemed ‘normal’. I’ve started taking a vitamin B complete supplement so I’ll look into the vitamins you suggested.

Meanwhile I have to wait for GP to get back to me. If I get nowhere I’ll try a private endocrinologist now the lockdown has eased a little. I’m feeling stressed as I’m back in school on Monday ☹️🙏

[SlowDragon Administrator in reply to Lala62]

GP B12 test is Serum B12

Range is 211-911

Any result under 500 can be too low, especially when on levothyroxine

Thriva test is Active B12 - this is better result.

Any Active B12 under 70 is considered suspect

Vitamin D, yes aiming to improve to around 80nmol and around 100nmol maybe better

TPO and TG antibodies are pretty high. This suggests you have Hashimoto’s (Autoimmune thyroid disease)

Show antibodies results to GP and ask for referral to endocrinologist of your choice

Plus ultrasound scan of thyroid

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

thyroiduk.org/contact-us/

Recommend getting Coeliac blood test too

Strictly gluten free diet frequently helps improve symptoms with Hashimoto’s

[Lala62 in reply to SlowDragon]

so would you recommend still to take a b viatmin supplement ?

[SlowDragon Administrator in reply to Lala62]

Well we should only make one change at a time and wait at least 2-3 weeks before making any further changes

So you just got dose increase in levothyroxine (make sure to get same brand as previously)

Then look at improving vitamin D

You might add vitamin B complex next (Remember to stop a week before any blood tests)

Thyroid levels will need retesting 6-8 weeks after each dose increase in levothyroxine

[Lala62 in reply to SlowDragon]

ok great thanks

[shaws Administrator in reply to Lala62]

SlowDragon is correct. Few doctors know how best to treat a patient who is hypothyroid. The majority seem to think a TSH 'somewhere' in the range is o.k. but it isn't. We need gradual increase every six weeks until TSH is 1 or lower (most doctors would think we've become hypERthyroid but that's not the case.

Now that we're hypo, we need all vitamins/minerals to be 'optimal' not just somewhere in the range as many doctors seem to believe.

The aim is a TSH of 1 or lower and FT4 and FT3 in the upper part of the ranges. The frees are rarely tested.

Blood draw should always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards.

[Lala62 in reply to SlowDragon]

So my Thriva results are back

FT3 4.7 optimal

TgAB 238 high

TPOAb 318.5 out of range

T4 thyroxine 97 normal

FT4 14.8 optimal

B12 86 normal

Ferritin 87 normal

Bit d 61 sufficient but advised to take 1000 daily supplement

It’s the Thyroglobulin antibodies and thyroid peroxidase antibodies that are concerning to me having had thyroid cancer removed right line in November last year 🙏

[fuchsia-pink in reply to Lala62]

It's always useful to add the ranges if you have them

For instance, if free T4 range for the Thriva test is 12 - 22, you are less than a third through it. Likewise freeT3 looks low in range using the ranges we often see here [ranges vary from lab to lab, which is why we need your specific range]

Most of us only feel well if our free T3 and free T4 are in the top third - often the top quartile of the range. As well as a TSH of less than 2 and often less than 1.

But very often we're told we are "in range" or "normal" when it's where in the range that is important.

It all looks to me like you're under-medicated. Hope you feel better soon x

[Lala62 in reply to fuchsia-pink]

Thank you for that - me too x

[Hidden]

Just to say I hope they resolve it soon, if feel pretty I'll at that level.

[Lala62 in reply to Hidden]

Thank you 🙏

[shaws Administrator]

Your dose of 50mcg was too low - it is a starting dose and you should have a blood test every six weeks (fasting -you can drink water) test at the earliest possible appointment and your dose increased by 25mcg every six weeks until your TSH is 1 or lower.

Unfortunately, few doctors seemed to be knowledgeable about hypothyroidism, nor how best to treat patients.

You need a TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The 'frees' are very informative although it costs more money to have them (it seems to me as they're rarely tested but they are very important).

A Full Thyroid Function Test is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The ranges must be stated as labs differ in their machines and so do the ranges. Ranges help members to respond.