Advice Please and thanks! : Looks like I am in... - Thyroid UK

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Advice Please and thanks!

djane profile image
8 Replies

Looks like I am in range? I don’t understand why I feel so bad still and the last two days have cramps in both my legs from top to bottom.

My results are;

TSH - 1.250 (0.27-4.2)

Free T4 - 15.100 (10.8 - 25.5)

Unfortunately these are the only tests my GP will do yearly. I asked for B12 and Vit D he will not do them and said just take supplements.

I did get my cholesterol done which after going gluten and dairy free has gone down a little which is great as they wanted me on statins which I think I def would have refused.

I am 49 and I am not sure if my symptoms would be from my thyroid or maybe menopause which he won’t test for either. Would be just good to know which one to tackle.

Is there anything else that has worked for anyone? I just want to feel really great again, like the old days ; )

Many thanks always for your support.

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djane
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djane profile image
djane

Sorry to the above meant to say have Hashimotos Hypothyroid.

SlowDragon profile image
SlowDragonAdministrator

Well your FT4 is only 50% through range

just testing TSH and FT4 is completely inadequate

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 as you have Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you did this test?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

What supplements do you currently take?

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

How much Levothyroxine are you currently taking?

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

verywellhealth.com/best-tim...

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. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

djane profile image
djane in reply to SlowDragon

Thanks for all your great information and advice. Yes I did fast before I took the blood test and had in the morning without taking the Levo. I take mine at 5am to make sure I don’t have it near anything. Interesting is that I was prescribed Mercury Pharma but without advising the chemist dispensed Treva on my last prescription. I will get some blood tests done and take it from there. At one stage I was taking a huge amount of supplements but was worried about taking them without any readings. But I guess B12 won’t hurt without any readings. Currently I am on 100mg.

Thanks again!

SlowDragon profile image
SlowDragonAdministrator in reply to djane

Teva can seriously upset many, many people

healthunlocked.com/search/p...

Get new prescription and put in yellow card if it is Teva causing issues

yellowcard.mhra.gov.uk

SeasideSusie profile image
SeasideSusieRemembering

djane

If GP wont do all the tests then you may wish to do what hundreds of us here do and that is a private test with one of our recommended labs. As you have Hashi's it's important to test your nutrient levels as well as Hashi's tends to cause low levels or deficiencies.

Popular test which includes the full thyroid and vitamin panel and can be done by fingerprick or venous blood draw (for extra cost):

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

When doing thyroid tests, we advise:

* 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. 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.

* Fast overnight - 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. Eating 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 will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

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

TSH - 1.250 (0.27-4.2)

Free T4 - 15.100 (10.8 - 25.5)

Looks like I am in range?

Yes, they are in range but they're not good. This is where doctors let us down. Just being in range doesn't mean they're at optimal levels for us.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

Your FT4 is only 29% through it's range, no wonder you don't feel well, this needs to be much higher.

Calculator for working out percentage through range here:

chorobytarczycy.eu/kalkulator

You need an increase in your Levo so ask your GP for an extra 25mcg now, retest in 6-8 weeks, then repeat every 6-8 weeks until your levels are where you need them to be for you to feel well. To support your request use the following information:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

When you have results for your nutrient levels, post them on the forum for further comment.

djane profile image
djane in reply to SeasideSusie

Can’t thank you enough, for your reply. I am having a phone consult with my GP in the morning in regards to dosage and results so this is great! I am in so much pain tonight and just off so you are right in your advice with the FT4. I really like the calculator - very handy, thanks. You all have such valuable feedback, I am still finding everything quite confusing, grateful for your help.

Your free T4 is too low in range, so your free t3 is probably also low, so that is probably why you feel bad. There is easily room for a 25mcg increase in levo.

djane profile image
djane in reply to Angel_of_the_North

I really wish I had the FT3 reading! I will go ahead and have the private testing and then hopefully onwards and upwards. I am hoping to get an increase tomorrow and yes true 25mcg is the best wav to go, thanks. I really appreciate your reply, it’s great to have feedback from people with similar experiences and are so willing to help others.

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