Any help/advice will be welcome.: Having read... - Thyroid UK

Thyroid UK

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Any help/advice will be welcome.

rambler123 profile image
10 Replies

Having read loads of helpful info on here, I thought I would ask for advice.

Background:

Jan 2016: felt ill, tired, as though developing flu/cold. Gave it 10 days, no improvement or obvious illness, booked GP appt.

Blood tests: TSH 7.5 (0.3-3.94) FT4 13.9 (12.3-20.2) high cholesterol low sodium

GP said thyroid borderline, test again in 6 mths (!!!). More concerned with cholesterol/sodium.

After 2 wks, sodium down further, barely able to function. Gave GP tick list of symptoms from TUK website (thank you!). Reluctantly prescribed 25 mcg levo. Referred to endo using husband’s work health insurance.

Lots of tests resulting in finding out that sometime in the past I’d had a mini-stroke without knowing. Meanwhile, on the levo, the fog lifted and sodium came back to normal. Still some symptoms so endo put dose up to 50 mcg – became hyper – anxiety, pools of sweat, itchy all over – TSH 2.9, FT4 22.2. Had to have a course of CBT after that, so don’t want to be over medicated again.

Positive for both types of antibodies.

Finally settled on 5 x 25/2 x 50 per week. Have since moved to 50 per day via 50/25 alt days.

Other meds: atorvastatin 20 mg (cholesterol went up when I tried dietary changes, and on the levo, so think hereditary – thanks Dad), clopidogrel.

Taking vit D (1000), as I don’t leave the house without factor 50 and a hat! (BCC 2013).

Now:

Last levo dose increase was pre-pandemic, 2020. Since, despite asking for TSH/T4 to be checked, couldn’t get past GP reception’s ignorance, and so only have

11/2/2021 TSH 3.51 (0.3-3.94) 16/6/22 TSH 2.95

for the last couple of years.

All testing to this point was done after taking my levo at approx. 5am (loo trip!), with bloods drawn mid to late morning – I knew no better!

After lots of reading on here over the last few weeks, decided to get Blue Horizon gold test. Here are the results following all advice on here (except I had a vit D tab the previous morning).

TSH: 4.53 mU/l (Range 0.27 - 4.2) 108.40%

FT4: 17.5 pmol/l (Range 12 - 22) 55.00%

FT3: 4.68 pmol/l (Range 3.1 - 6.8) 42.70%

And here are the full results from BH:

Biochemistry

CRP 0.84 <5.0 mg/L

Ferritin H 281.0 13 - 150 ug/L

Magnesium 0.95 0.66 - 0.99 mmol/L

Hormones

Cortisol (Random) 494.0 6am - 10am 166 - 507 nmol/L New range

4pm - 8pm 73.8 - 291

Thyroid Function

TSH H 4.53 0.27 - 4.20 mU/L New range & unit

T4 Total 119.0 66 - 181 nmol/L

Free T4 17.5 12.0 - 22.0 pmol/L

Free T3 4.68 3.1 - 6.8 pmol/L New range

Immunology

Anti-Thyroidperoxidase abs H 125 <34 IU/mL New units

Anti-Thyroglobulin Abs H 278 <115 IU/mL New units

Vitamins

Vitamin D (25 OH) 69 (adequate)

Vitamin B12 208 145 - 569 pmol/L

Serum Folate 9.60 8.83 - 60.8 nmol/L

My thoughts/actions/questions:

1) I have changed to a vit D spray, with higher (3000) dosage.

2) I have started with a vit B12 spray to try and improve that level. Any thoughts on the efficacy of the spray? Does it need to be separated from other things?

3) Is folate the same as folic acid? I think I should supplement this as well but not sure what to get.

4) Do you think I’m a poor converter? Plan is to improve vitamin levels and test those again. If improved, then retest TSH/FT4/FT3 and see if that has helped.

5) Current symptoms are a bit of brain fog, weight gain (particularly round my middle) and some hip/knee pain. Might improved vitamin levels help with this? Should I be worried about the high ferritin? (66 yr old, female)

Thank you!

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SeasideSusie profile image
SeasideSusieRemembering

rambler123

(except I had a vit D tab the previous morning).

That's the way to test Vit D, you don't leave it off, just take after test on the day :) . The only supplement you leave off is B Complex or Biotin or any supplement containing biotin (eg hair/nail supplement) as biotin can give false results for any blood test.

You have two lots of thyroid tests, which are the most recent?

TSH: 4.53 mU/l (Range 0.27 - 4.2) 108.40%

FT4: 17.5 pmol/l (Range 12 - 22) 55.00%

FT3: 4.68 pmol/l (Range 3.1 - 6.8) 42.70%

And here are the full results from BH:

CRP 0.84 <5.0 mg/L

This is a good result. As CRP is an inflammation marker then the lower the level the better.

Ferritin H 281.0 13 - 150 ug/L

Do you know why this is high? It can't be from inflammation or your CRP would be high. Do you supplement? Has it been high before?

Magnesium 0.95 0.66 - 0.99 mmol/L

Testing magnesium is unreliable. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.

A red cell magnesium test is the better indicator of magnesium status, not the standard serum magnesium test. The red cell test is expensive and requires phlebotomy which is why it's not included in these bundles.

Cortisol (Random) 494.0 6am - 10am 166 - 507 nmol/L

Assuming you did your test before 10am then this is within range. Cortisol should be highest early morning and lower throughout the day.

TSH H 4.53 0.27 - 4.20 mU/L

T4 Total 119.0 66 - 181 nmol/L

Free T4 17.5 12.0 - 22.0 pmol/L = 55% through range

Free T3 4.68 3.1 - 6.8 pmol/L = 42.7% through range

Your TSH is over range and very high considering your FT4 and FT3 levels. Could anything have interfered with the result, eg you had something to eat/drink other than water before the test?

Your FT4 and FT3 are quite well balanced but there is plenty of room for them to be higher so an increase in your Levo may be beneficial.

Anti-Thyroidperoxidase abs H 125 <34 IU/mL

Anti-Thyroglobulin Abs H 278 <115 IU/mL

Confirms your Hashi's.

Vitamin D (25 OH) 69nmol/L

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

To reach the recommended level from your current level, you could supplement with 3,000 -4,000iu D3 daily.

You might want to check out a recent post that I wrote about Vit D and supplementing:

healthunlocked.com/thyroidu...

and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.

Your current level of 69nmol/L = 27.6ng/ml

On the Vit D Council's website you would scroll down to the 3rd table

My level is between 20-30 ng/ml

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).

So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 3,700iu per day.

Retest after 3 months.

Once you've reached then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

90-100mcg K2-MK7 is enough for up to 10,000iu D3.

For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Vitabay and Vegavero are either tablets or capsules.

Vitabay does do an oil based liquid.

Vitamaze is an oil based liquid.

With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.

They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form

natureprovides.com/products...

It may also be available on Amazon.

One member recently gave excellent feedback on this particular product here:

Here is what she said (also read the following replies):

healthunlocked.com/thyroidu...

Magnesium helps the body convert D3 into it's usable form. I have further information about that which I can't put my hand on at the moment, I'll come back with it.

Vitamin B12 208 145 - 569 pmol/L

This equals 281pg/ml and is low. Plenty of people with B12 in the 300spg/ml have been found to need B12 injections.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

If you don't then you would be OK to self supplement. Come back and say if you have any signs/symptoms.

Serum Folate 9.60 8.83 - 60.8 nmol/L

Folate is recommended to be at least half way through range, that would be about 35 plus with that range. Folate rich foods can help, as can supplementing with a good quality bioavailable B Complex but this should not be started before further testing of B12 and B12 injections or supplements started. B12 first, folate follows.

1) I have changed to a vit D spray, with higher (3000) dosage.

I don't like sprays, they have so many excipienents, I prefer clean supplements where possible.

2) I have started with a vit B12 spray to try and improve that level. Any thoughts on the efficacy of the spray? Does it need to be separated from other things?

Please see my comments about testing for B12 deficiency.

3) Is folate the same as folic acid? I think I should supplement this as well but not sure what to get.

No, folic acid is sythetic and the body has to convert it to folate.

4) Do you think I’m a poor converter? Plan is to improve vitamin levels and test those again. If improved, then retest TSH/FT4/FT3 and see if that has helped.

No, see comments in relation to your thyroid results.

5) Current symptoms are a bit of brain fog, weight gain (particularly round my middle) and some hip/knee pain. Might improved vitamin levels help with this? Should I be worried about the high ferritin? (66 yr old, female)

I've commented on ferritin above. If not supplementing then I would discuss with your GP.

Your symptoms sound like undermedication although the hip/knee pain could be something else.

Other meds: atorvastatin 20 mg (cholesterol went up when I tried dietary changes, and on the levo, so think hereditary – thanks Dad), clopidogrel.

High cholesterol is a symptom of hypothyroidism.

Statins are not recommended for females.

NHS has this to say about statins and hypothyroidism:

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

If you are optimally medicated then cholesterol should short itself out. However, cholesterol is not the problem, we need cholesterol. What was your result for Triglycerides, that's the important one.

We always advise doing thyroid tests this way:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

SeasideSusie profile image
SeasideSusieRemembering in reply to SeasideSusie

rambler123

Information about magnesium:

Magnesium helps the body convert D3 into it's usable form.

There are many types of magnesium so we have to check to see which one is most suitable for our own needs:

naturalnews.com/046401_magn...

explore.globalhealing.com/t...

and ignore the fact that this is a supplement company, the information is relevant:

swansonvitamins.com/blog/ar...

Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds.

rambler123 profile image
rambler123 in reply to SeasideSusie

You have two lots of thyroid tests, which are the most recent?Both from 25/7 - I used the calculator to give % through range, but then just copied full BH results.

Your TSH is over range and very high considering your FT4 and FT3 levels. Could anything have interfered with the result, eg you had something to eat/drink other than water before the test?

Did not eat/drink anything before test at 8am. My TSH has always been quite near the upper end even when feeling well. Definitely never under 2 as recommended!

Thank you for all the vit D info - I shall read in detail and follow the advice.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

If you don't then you would be OK to self supplement. Come back and say if you have any signs/symptoms.

I've gone through the comprehensive list of symptoms and can't identify any which aren't consistent with being hypo. Also, I think the endo did look at the possibility back in 2016, but I was in such a complete fog I can't remember definitively. No test results from then on my NHS GP records, only the ones the GP did.

So I'll read and digest the advice about supplementing - thank you!

If you are optimally medicated then cholesterol should short itself out. However, cholesterol is not the problem, we need cholesterol. What was your result for Triglycerides, that's the important one.

Serum triglycerides 2.0 mmol/L normal range: - 2.0 (16/6/22)

I followed all the guidance on here about timing etc for the BH test.

Thank you for your comprehensive reply - there is much to study over the coming days!

rambler123 profile image
rambler123 in reply to SeasideSusie

Also forgot to say that I have no idea why my ferritin is high. I have never taken any iron supplements except briefly in 1991 after birth of 2nd son.

Jaydee1507 profile image
Jaydee1507Administrator

Still some symptoms so endo put dose up to 50 mcg – became hyper – anxiety, pools of sweat, itchy all over – TSH 2.9, FT4 22.2

Just to point out that absolutely wasn't a hyper result. Your TSH is nowhere near off the range or suppressed.

I also suffer hyper symptoms when hypo. It's horribly confusing and nasty.

You've had some great and detailed advice. Stick with it and know you need more thyroid hormone, probably some T3 but add it super slowly + all the vits stuff. Hang in there.

SlowDragon profile image
SlowDragonAdministrator

How long have you been on 50mcg levothyroxine per day

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Results show you are under medicated

Getting dose increase in levothyroxine …..perhaps 12.5mcg extra per day initially (cut 25mcg tablet in half)

Retest after 6-8 weeks

Approx how much do you weigh in kilo?

Working on improving low vitamin levels as detailed so excellently by SeasideSusie

Plus ….as you have Hashimoto’s

Have you had coeliac blood test done

Assuming you are not already on strictly gluten free diet

Get coeliac blood test done BEFORE considering trial on strictly gluten free diet

rambler123 profile image
rambler123 in reply to SlowDragon

How long have you been on 50mcg levothyroxine per daySince Jan or Feb 2020

Which brand of levothyroxine are you currently taking

Tevo

Do you always get same brand levothyroxine at each prescription

Yes, always been on Tevo

Results show you are under medicated

Getting dose increase in levothyroxine …..perhaps 12.5mcg extra per day initially (cut 25mcg tablet in half)

That's what I was thinking, but would probably do 50/75 0n alternate days which worked well when I had the 25/50 combo

Retest after 6-8 weeks

Approx how much do you weigh in kilo?

70 kg ish

Working on improving low vitamin levels as detailed so excellently by SeasideSusie

Plus ….as you have Hashimoto’s

Have you had coeliac blood test done

No. Does coeliac disease suddenly arrive or do you have it for life, from childhood?

Assuming you are not already on strictly gluten free diet

Get coeliac blood test done BEFORE considering trial on strictly gluten free diet

Thank you for all your advice - very helpful.

SlowDragon profile image
SlowDragonAdministrator in reply to rambler123

So guidelines suggest you might eventually be on something around 112mcg

So likely to need further increases in levothyroxine over coming months/years

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.

On levothyroxine we frequently develop leaky gut, this leads to developing gluten intolerance. Before considering trial on strictly gluten free diet, get a coeliac blood test done first to rule it out

Gingernut44 profile image
Gingernut44 in reply to rambler123

Are you lactose intolerant? Do you think that the reason you had side effects from the Levothyroxine might be due to the fillers? Have you ever tried a different brand, Teva doesn’t suit everyone.

rambler123 profile image
rambler123 in reply to Gingernut44

Definitely not lactose intolerant. I think, in retrospect and knowing so much more, it was my body responding to too rapid an increase in dosage rather than it being too much. However, I am now feeling much more confident about increasing my dosage, but taking it slowly. That is all thanks to this site and the great combination of expertise, personal experience and helpful resources. Thank you all so much!

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