Is my GP likely to agree to a trial of Levothyr... - Thyroid UK

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Is my GP likely to agree to a trial of Levothyroxine with these results?

Hux71 profile image
18 Replies

I've got a GP appointment tomorrow and have just had the following test results:

TSH: 4.48 (0.27 - 4.2)

T4: 14.2 (12.0 - 22.0)

B12: 587 (>178)

Ferritin: 33 ug/L (13.0 -150.0)

Folate: 4.8 ug/L (>2.9)

I asked for thyroid antibodies to be tested as well, but my doctor said this would only be done if T4 was below range, which it's not.

Ferritin and folate are also in range, but obviously towards the bottom end of the scale.

Having been fobbed off a year ago, and feeling progressively worse ever since, does it seem reasonable for me to request a trial of Levothyroxine with the above results? And is there anything else I should ask at my appointment tomorrow?

Thanks for any insight.

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Hux71
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18 Replies
mistydog profile image
mistydog

Please add ranges to your post so that we can see how the figures sit within them.

Beads profile image
Beads

In addition to Mistydog’s comment, you were ‘fobbed off’ a year ago? So this is your second over range TSH result? If yes, then someone will post the link to the Nice reference which says they should offer a trial, if not then you’ll need to be retested in 3 months.

In the meantime follow advice your given about increasing ferritin, folate and B12.

tattybogle profile image
tattybogle in reply toBeads

nice.org.uk/guidance/ng145/... Recommendations#managing-and-monitoring-subclinical-hypothyroidism

it's here , but it doesn't say they ' should ', it only says ' may consider'

Re GP saying they only test TPOab if fT4 under range ........ the guideline says " Consider measuring TPOAbs for adults with TSH levels above the reference range"

SlowDragon profile image
SlowDragonAdministrator

Request full iron panel for anaemia too

Low vitamin levels tend to lower TSH

Being hypothyroid frequently results in low vitamin levels

If GP won’t test thyroid antibodies, test privately

Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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 all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid includes both antibodies

medichecks.com/products/thy...

plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon

antibodies

bluehorizonbloodtests.co.uk...

Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee 

no vitamin D result

If not doing full thyroid and vitamin test use

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Cornwaller profile image
Cornwaller

A trial would be sensible. However it is likely your GP will decline.You might persuade him if you make a detailed list of your symptoms and how bad they are. With your bloods plus symptoms you have a stronger case for a trial.

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu....

Was recent NHS test also done early morning…..only water to drink between waking and testing

Heavy periods will lead to anaemia

Getting ferritin up to at least 70

And start daily vitamin B complex to improve folate

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

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

Difference between folate and folic acid 

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results 

healthunlocked.com/thyroidu...

come back with new post when get thyroid antibodies and/or vitamin D results

Hedgeree profile image
Hedgeree

Hi Hux71,

I know from my own experience that low ferritin can cause many symptoms. Little energy, feeling heavy, overwhelming tiredness, breathlessness and feeling very low were some that I experienced. I've also lost much hair. It's really thinned out.

Also if vitamin D is low that again can cause many symptoms that overlap with thyroid problems. Do you have a vitamin D result?

If you're able to start working on improving these core vitamins whilst you wait for GP to possibly start treating you with hormones it will help you when you do get levo prescribed as your body will be able to use the hormones more effectively.

Are you a meat eater? If yes it's much easier to work on ferritin levels.

Hope the GP appointment goes ok 🙂

WhyAmISoTired profile image
WhyAmISoTired

Low iron can raise TSH levels. So it is possible that your problem is not actually with your thyroid.

SlowDragon profile image
SlowDragonAdministrator in reply toWhyAmISoTired

low iron/ferritin often lowers TSH

Hux71 profile image
Hux71

Thank you all for your replies - I'm slowly becoming better informed largely thanks to this forum. I've edited my original post to show the stated "normal" ranges.

SlowDragon that's really helpful info re folate and B12. Also obviously worth considering if my symptoms are actually due to low iron. I haven't been tested at all for D3 but will work on getting all of these up to optimum levels.

Hedgeree I do eat meat, the hair thing is really stressing me out. The doctor is very dismissive of it, saying it could be genes/stress/menopause/thyroid but seemingly not in any mad rush to eliminate any of these. Have you found anything that helps?

These results were the second set with raised TSH and following my appointment this morning she has (fairly reluctantly) agreed to trial me on Levothyroxine for 8 weeks and then do follow up bloods, so I guess that's progress of sorts!

SlowDragon profile image
SlowDragonAdministrator in reply toHux71

How much Levothyroxine

Make sure to take on empty stomach and then nothing apart from water for at least an hour

Retest early morning ideally just before 9am and only water between waking and test …..last dose Levothyroxine 24 hours before o

SlowDragon profile image
SlowDragonAdministrator

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Look at increasing iron rich foods in diet 

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

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

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.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary 

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Hux71 profile image
Hux71 in reply toSlowDragon

SlowDragon 25mcg of Levothyroxine - the doctor just said not to have anything with milk in it for an hour after taking it, but given that your knowledge of all things thyroid seems much more far-reaching than hers, I'll follow your advice re only water for an hour!

Thanks so much for all the links, I will work my way through them. Waiting for antibody bloods back from Monitor My Health, but I've read somewhere they only check for one and there are two, so unsure whether I'll be any the wiser really...

SlowDragon profile image
SlowDragonAdministrator in reply toHux71

How old are you

Standard starter dose is 50mcg unless over 65

Starting on too low a dose can make symptoms worse….because levothyroxine doesn’t “top up” your own thyroid hormones…..it replaces them

As TSH drops in response to adding levothyroxine your own thyroid starts working less, producing less hormone, in in effect you start to become more hypothyroid

Getting dose levothyroxine increased by 25mcg as fast as tolerated after each follow up blood test

Calcium rich foods should (ideally) be 4 hours away from levothyroxine as can reduce amount of levothyroxine absorbed

If you always have exactly same breakfast then it’s not an issue…..it’s if some days you have milk/yogurt….and some days not

Yes….MMH is private testing via NHS and they (currently) only test TPO antibodies

Medichecks and BH test both

NHS only tests TG antibodies if TPO antibodies are high

Significant minority of Hashimoto’s patients only have high TG antibodies

20% of Hashimoto’s patients never have high thyroid antibodies …..if both antibodies negative getting an ultrasound scan can be helpful

Hux71 profile image
Hux71 in reply toSlowDragon

I'm 52.I guess I'll have to resign myself to a 25mcg dose for the first couple of months. It's practically impossible to even get an appointment here, and was equally painstaking to persuade her to agree to trying Levothyroxine at all, but I'll certainly bear in mind what you've said if I actually start feeling worse.

So if the MMH test comes back with high TPO antibodies, will the GP then accept their result to test TG? And if TPO is normal I need to test privately for TG?

SlowDragon profile image
SlowDragonAdministrator in reply toHux71

If TPO comes back high no real need to test TG antibodies (just out of internet get a Medichecks or BH full test at some point in future)

If TPO is negative…..you will need to test via Medichecks or BH ……..Wait until been on 25mcg at least 6-8 weeks minimum

SlowDragon profile image
SlowDragonAdministrator

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near 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...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Hedgeree profile image
Hedgeree

Hi Hux71,

Sorry for my delayed reply. I've been worried about my hair as it is naturally very thick. Two hairdressers have said the tiny bald patches weren't that noticeable and it's more a general thinning out. Not sure if that's better or not? 🤔 Though typically a male friend with very long hair noticed the thinned out parts and pointed it out to me!

It's harder for me to increase my ferritin levels as I don't eat meat. I have stopped drinking tea with meals and having some fruit juice (lime/orange) to try to aid iron uptake from food.

I've been taking gentle iron every other day with vitamin C which probably due to it having low iron content may not make much difference. I'm due to test levels again in a week or so.

It is a mini struggle trying to juggle timings of supplements but I'm taking it day by day. I've tried to not focus too much on hair loss but how to improve things with supplements and get into a routine. I was only prescribed Levo in August last year after a partial thyroidectomy. I struggled to tolerate it so have had to titrate very very slowly and am now on 50mcg 😊

SlowDragon has given you lots of good information to help increase your ferritin levels.

Best wishes.

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