Should I self adjust my thyroid medication? - Thyroid UK

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Should I self adjust my thyroid medication?

busybird55 profile image
17 Replies

I have been prescribed Levothyroxine for several years, after having a private blood test, showing that I had antibodies present. I am on a dosage of 75 mcg daily, but for the past few months have felt very tired, for no apparent reason. Also have picked up a few cold/flu bugs whereas n the past, I have, despite grandchildren, managed to avoid them. I take supplements of Vit D3, magnesium and K2 (My GP has asked me to reduce my VitD as she says my reading is too high at 214.3 nmol/L. I am also on HRT and Testosterone. I am including my blood test results for thyroid function and wondered if these still look okay. I was reading that over supplementing can cause fatigue and poor sleep (which has never been great). I make a point of missing the thyroxine dose the night before a blood test. My weight has stayed constant and I am not overweight. There was also an out of range Mean cell haemoglobin concentration reading, which was slightly high, but not by much. I know the current dosage I am on of Levothyroxine is not high, but wondered if I should perhaps reduce it a little. It's really the fatigue that is becoming tiresome - excuse the pun. Here are the blood test results I have: I would be grateful for any thoughts.

Jul-17 TSH 1.28 (0.27-4.20)

T4 Total 78.6 (64.5-142.0)

Free T4 15.43 (12-22)

Free T3 4.45 (3.1-6.8)

Anti TPO 78.5 (<34)

THYAB 434 (<115)

Jan-19 TSH 0.16 (0.38-5.33)

T4 11.9 (7.0-16)

Sep-19 TSH 0.177 (0.38-5.33)

T4 12.9 (7.0-16.0)

Oct-20 TSH 0.2 (0.39-5.33)

T4 13.1 (7.0-16)

T3 4.8 (3.8-5.33)

May-22 TSH 0.707 (0.34-5.66)

T4 11.3 (7.7-15.1)

Aug-23 TSH 0.207 (0.34-5.6)

T4 11.7 (7.7-15.1)

Oct-24 TSH 0.227 (0.34-5.6)

T4 13.2 (7.7-15.1)

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17 Replies
RedApple profile image
RedAppleAdministrator

busybird55, The last three sets of results do not include FT3 readings. Whilst TSH and FT4 might be sufficient for your GP, they are not sufficient to enable knowledgeable members here to answer your question.

If your FT3 is wrong for you (typically too low), this could account for the symptoms you describe. Your FT4 is not especially high, so it may be that you need a dose increase rather than decrease. But we need the full picture 😊

I would not advise adjusting your dose without this information. If you can afford it, a private test would be a good thing to do. Reasonably priced home finger prick tests can be purchased through MonitorMy Health monitormyhealth.org.uk/thyr... and Randox randoxhealth.com/en-GB/at-h...

If you decide to do a self test, do post again as soon as you have the results and members will be more able to help.

busybird55 profile image
busybird55 in reply toRedApple

Thank you. I think that is the only way I will get a FT3 test. It is a bit of a battle sometimes to get relevant tests from the GP surgery. The first one was private and the second one was a full test prior to a procedure, not from my own doctor. However she is keen to test my Vitamin D again when I have complied with her instructions to stop supplementing (which I am reluctant to do). Appreciate the advice.

RedApple profile image
RedAppleAdministrator in reply tobusybird55

GPs don't test FT3 unless both TSH and FT4 are well out of range, and even then, FT3 may not be tested by the lab. the importance of FT3 is still a complete mystery to most medics 😞

Forgot to say you can use code THYROIDUK10 at MonitorMyHealth to get 10% off any test you order from them.

busybird55 profile image
busybird55 in reply toRedApple

Thanks. I will do this. It will be one more box ticked.

SlowDragon profile image
SlowDragonAmbassador

I make a point of missing the thyroxine dose the night before a blood test.

That’s then too long between last dose Levothyroxine and test ….so Ft4 would actually be higher if testing correctly

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

When were B12, folate and ferritin levels last tested

Yes vitamin D a bit high

What other vitamin supplements are you taking

Suggest you test thyroid and vitamin levels

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

busybird55 profile image
busybird55 in reply toSlowDragon

I will take note of the timing before I test. I have just ordered some zinc as I seem to be struggling to get rid of cough/sinus bug at the moment which is probably not helping the fatigue. My HBA1C was tested 5.4% (4-5.9)and IFCC standardized 36 mmol/mol (20.0-41.0). Also cholesterol serum HDL 1.5; non HDL cholesterol 3.4; Serum cholesterol ratio 3.3; serum triglyceride levels 1.1 mmol/L. Calculated LDL 2.9. I can't see that Ferritin or Folate have been tested since the Blue Horizon one I did in 2017. B12 was 601 then and Serum Folate 17.35. Would that not have been included when they did my routine annual test? Perhaps I should ask. It certainly isn't on my NHS record. Apart from Vit D, K2 and magnesium (three different types) I also take collagen.

busybird55 profile image
busybird55 in reply toSlowDragon

I did as suggested and requested a blood test with the GP - who apologised and said it was missed off the 'full blood count' test last month. The results were: B12 389 (144-915) Serum Folate 14.5 (3.1-19.9) and Serum Ferritin 78 (11-306.8) Curiously, my Vitamin D had increased to 219.3 nmol/L from 214.3 last month, even though I had reduced my dosage drastically.

I also did a private thyroid test. taking note of the dosage timings delayed and they are a bit different to those done by the GP last month. FT 4 was 13.2 (7.7-15.1) and TSH 0.227 (0.34-5.6). Not sure why it would be so different in a short time.

Does the above info suggest anything I should be doing? Thanks in advance.

clear
SlowDragon profile image
SlowDragonAmbassador in reply tobusybird55

The results were:

B12 389 (144-915)

Serum Folate 14.5 (3.1-19.9)

B12 too low

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

healthunlocked.com/thyroidu...

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 improve B12 levels too

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

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

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

busybird55 profile image
busybird55 in reply toSlowDragon

I forgot to ask, I posted my full results from Randox for thyroid. Does the T3 look okay? Was a bit surprised that TSH was much higher than the results from the GP only a month ago.

SlowDragon profile image
SlowDragonAmbassador in reply tobusybird55

Free T4 (fT4) 18.8 pmol/L (12 - 22) 68.0%

Free T3 (fT3) 4.89 pmol/L (3.1 - 6.8) 48.4%

suggest you retest again in another 2 months

See which way results are going

May be ready for next increase in Levo

Meanwhile working on low B vitamins

Or see GP to discuss SMALL increase in Levo now

Up to 87.5mcg daily

How much do you weigh in kilo

busybird55 profile image
busybird55 in reply toSlowDragon

60kg. Has barely fluctuated over the past couple of years. I eat pretty well and exercise quite regularly, depending on energy levels. I’m 68.

SlowDragon profile image
SlowDragonAmbassador in reply tobusybird55

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

So guidelines suggest approx 96mcg Levo per day

or approx 675mcg per week

Some people need a bit less than guidelines….

Some need a bit more

On 75mcg daily……that’s only 525mcg per week

busybird55 profile image
busybird55 in reply toSlowDragon

Following on from your suggestion, I finally received a telephone consultation from my GP. I explained that the TSH result from the private test was quite different from the one carried out via the surgery (which, I did as a fasting test). She insisted that thyroid function tests do not have to be fasting, and if anything my Levo should be reduced rather than increased but agreed to re-test in February. Therefore I will ensure I get an early appointment and make it a fasting tests regardless! She also mentioned my Vitamin D level again and I assured her I had reduced my intake of the supplement. It was interesting to see the transcript on my health record that I have stopped supplementing completely with vitamin D. It does show that she really wasn't listening. I guess as the call came at 7.15 in the evening, after being told it was an 'anytime' call, she must have been tired. I appreciate the guidance on navigating these issues and B12 and B complex are now added to my regime. I guess I will see how it pans out in February.

SlowDragon profile image
SlowDragonAmbassador in reply tobusybird55

Serum Ferritin 78 (11-306.8)

Ferritin pretty good

Might be better nearer 100

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week. Ideally red meat regularly, 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/too-littl...

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

busybird55 profile image
busybird55 in reply toSlowDragon

Thank you . Lot's of useful information there. Will dissect and follow up with the advice. Much appreciated. It's good to know there is something I can do.

humanbean profile image
humanbean

I take supplements of Vit D3

Since your vitamin D3 is high, you could make your life easier by continuing to take the same product you currently do, but only take it, say, 2 or 3 days a week, or however much you need to maintain a level of about 100 - 150 nmol/L.

busybird55 profile image
busybird55 in reply tohumanbean

Yes, I have reduced it. I'm still maintaining with magnesium though as I guess it can't hurt and it keeps my digestion on track. Thank you.

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