can anyone advise re test results? not sure wha... - Thyroid UK

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can anyone advise re test results? not sure what to think

ElephantShrew profile image
20 Replies

hi Forum!

I'm new here - first post - could i get some advice?

I am 48, have been feeling really tired for months and really brainfogged since Feb/March & thought it was age and menopause starting. Then i had 2 periods in a month so went to GP to see if ok and talk about HRT because fed up of tiredness and not being able to think. Dr did the blood tests & test results:

Serum free T4 level 9.8 pmol/L [7.0 - 16.0]

Serum TSH level 12.2 miu/L [0.38 - 5.33]

Serum follicle stimulating hormone level 9.1 iu/L

Serum vitamin B12 level 208 ng/L [150.0 - 900.0]

Serum folate level 6.2 ug/L [3.1 - 19.9]

Serum ferritin level 21 ng/mL [12.0 - 280.0]

Serum sodium level 138 mmol/L [133.0 - 146.0]

Serum potassium level 3.5 mmol/L [3.5 - 5.3]

Serum urea level 4.1 mmol/L [2.5 - 7.8]

Serum creatinine level 84 umol/L [49.0 - 90.0]

So Dr said underactive thyroid & I have been on 25microgram levothyroxine for 2 months. i feel a bit better but still tired and aches and pains and finding hard to think/concentrate. I have just had second blood test, results

Serum free T4 level 10.4 pmol/L [7.0 - 16.0]

Serum TSH level 9.43 miu/L [0.38 - 5.33]

TPO ANTIBODY

THYROID PEROXIDASE ANTIBODY NEGATIVE

I was hoping to get my levothyroxine level raised but the Dr has written "satisfactory no further action" so am still on 25microgram.

I can see that my T4 is in range so does this not count as proper hypothyroidism if T4 is in range even if TSH is well outside range? (why do they have a range if they're going to ignore it? ) If it's not proper hypothyroidism can it be treated or is this normal aging process?

i also have hypertension so have just started 2.5 mg ramipril.

thanks for any help, feeling a bit miserable

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SlowDragon profile image
SlowDragonAdministrator

See/contact GP on Monday

You need 25mcg dose increase and blood retested again in 6-8 weeks

This continues until TSH is under 2, Ft4 at least in top third of range and Ft3 at least half way through range

Standard starter dose of levothyroxine is 50mcg

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine 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.

Also here

cks.nice.org.uk/topics/hypo...

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

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

Serum ferritin level 21 ng/mL [12.0 - 280.0]

Ferritin is very low

Ask GP for full iron panel test for anaemia

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Serum vitamin B12 level 208 ng/L [150.0 - 900.0]

Serum folate level 6.2 ug/L [3.1 - 19.9]

These are both on low side

They should improve as levothyroxine dose is increased upwards

But you might need to consider improving by supplementing

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/vitamins/vit...

Very important to regularly retest vitamin D too

Likely very low

Ask GP to test or use NHS postal kit here

vitamindtest.org.uk

Come back with new post once you get vitamin D result

Plus let us know that you got 25mcg dose increase in levothyroxine on Monday

ElephantShrew profile image
ElephantShrew in reply to SlowDragon

THANKYOU SO MUCH for all of this! i am just working my way through - i was wondering about vitamin supps etc but not sure what to do/what to take so this is all super helpful.

i tried to get an appointment earlier this afternoon but this Dr is away for 3 weeks and the receptionist wouldn't book me with a different Dr (she told me i shouldn't be questioning the medical decision so i think i'm on naughty step) so i just left it. i have to go in tomorrow for some hypertension tests so I will see if the nurse can advise.

thankyou again this really really helps!

humanbean profile image
humanbean in reply to ElephantShrew

i tried to get an appointment earlier this afternoon but this Dr is away for 3 weeks and the receptionist wouldn't book me with a different Dr (she told me i shouldn't be questioning the medical decision so i think i'm on naughty step) so i just left it.

I would be tempted to ask the receptionist where she got her medical degree from. What a damn cheek she has. Isn't there supposed to be some policy in the NHS about "no decision about me without me"? See this link and see if you think it might be helpful :

england.nhs.uk/shared-decis...

I think you should try and get an appointment again, and if you are refused a second time then write a letter directly to the practice manager pointing out that your TSH is still nearly double the top of the range. You can also print out some of the links that SlowDragon has given you (print out ones most helpful to your cause and highlight the relevant bits).

ElephantShrew profile image
ElephantShrew in reply to humanbean

yes! :) and that's a really helpful link, part of the problem is feeling so powerless.

& yes! am phoning back tomorrow to try to get an appointment with my registered GP. The surgery is really busy so when i phone in i get passed to whichever doctor is on call and I wonder whether some of the problem has been that each query/test result is getting dealt with by a different doctor. (this might be optimistic)

I'll phone in tomorrow and ask to speak to my registered GP, who's always been pretty decent in the past, fingers crossed!

Am just making a big document with everyone's advice in for quick reference!

humanbean profile image
humanbean in reply to ElephantShrew

Oh, this might be helpful, or might not. You decide...

healthunlocked.com/thyroidu...

ElephantShrew profile image
ElephantShrew in reply to humanbean

thankyou! that is really interesting (although it's also all starting to make me wonder how much underlying ageism and sexism there has been in how the rules have been set for thyroid problems? but perhaps that's over-sensitive)

humanbean profile image
humanbean in reply to ElephantShrew

I don't think you're being over-sensitive at all. Ageism and sexism is rife in medical practice all over the world as far as I can tell.

ElephantShrew profile image
ElephantShrew in reply to humanbean

:(

humanbean profile image
humanbean in reply to ElephantShrew

I wouldn't print out the thread itself - I would suggest printing out the source documents themselves. For the graph :

web.archive.org/web/2004060...

And this one - the image in the thread comes from the right hand half of Table 3. You can download or print a copy of the PDF from this link :

eje.bioscientifica.com/view...

SlowDragon profile image
SlowDragonAdministrator

Lastly

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

healthunlocked.com/thyroidu...

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

ElephantShrew profile image
ElephantShrew in reply to SlowDragon

(gosh there's a lot to watch out for) have just checked on box - mine is MercuryPharma. it seems ok so far - no side effects or weirdnesses and I was quite pleased by how much my TSH had gone down already but I don't really know what to expect.

SlowDragon profile image
SlowDragonAdministrator in reply to ElephantShrew

Mercury Pharma is well tolerated by many. Also is available in 25, 50 and 100mcg tablets

Ruby1 profile image
Ruby1 in reply to ElephantShrew

My brand seems to get switched all the time, but to be honest I’ve noticed no difference, so we don’t all react badly to those brands.

It’s good to know about though, just in case there is anything awry.

SlowDragon profile image
SlowDragonAdministrator

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Marymary7 profile image
Marymary7

You have had the most brilliant helpful advice there. Can only praise the admin for such lovely help freely given.🌺

Good luck in sorting your doctor out 😎

Ruby1 profile image
Ruby1

Please don’t consider yourself on the naughty step. You still feel unwell and that is a good enough reason to see your GP, irrespective of any blood results. It is not the receptionist’s job to say whether you should see the doctor either.

You’ve had some excellent advice above. Good luck on getting the medication you need.

mistydog profile image
mistydog in reply to Ruby1

Agreed, and you have the right to see any doctor in the practice. Your current one is clearly useless, pull on your big girl pants and DEMAND a second opinion!

Good luck (PS, was steaming reading the original post!)

pennyannie profile image
pennyannie

Hello ElephantShrew and welcome to the forum :

I can't really add anything - we were all there once - just go one step at time and read up and follow the excellent advise you have been given - and keep us posted.

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