Why thyroid range keep changing?: I have had to... - Thyroid UK

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Why thyroid range keep changing?

Shug1974 profile image
12 Replies

I have had to decrease my T4 as lower dose been prescribed by my endocrinologist as thyroid range has changed again from 8-16 to 7.9-14. My T3 is 5.2 normal range 3.1-6.8 and that is with me taking T3. My T4 was 14.5. I feel a lot better when my t4 range has been at least 16 to 17. I am feeling nausea, bloated all the time, weight gain, brain fog, bladder problem constipation and halitosis. I have already tried lowering my medication in the past with the same problem but when i increase the T4 all my symptoms disappear. My tsh is also suppressed. Don't know what to do as my endocrinologist will not listen.

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Shug1974
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12 Replies
Aurealis profile image
Aurealis

Take the dose that makes you feel well - that’s the goal of treatment. Your body tells you, just have to listen to it :). If endo doesn’t know that then get a new one.

Jazzw profile image
Jazzw

Shug1974, when you have your blood taken is it first thing in the morning and BEFORE you’ve taken your levothyroxine dose?

Shug1974 profile image
Shug1974 in reply to Jazzw

Yes it is.

SeasideSusie profile image
SeasideSusieRemembering

Shug1974

It doesn't matter what the reference range is, the range doesn't make any difference. Your result will be relative to the range the lab uses at the time of the test, and would be a different number with a different range. What is important is where in the range your result lies.

If your FT4 result was 14.5 with a range of 8-16 then you were 81% through the range.

If the range at that time had been 7.9-14, then to be 81% through that range your result would be 12.85

Can you say what your actual result and reference for FT4 were when you were feeling well and what dose of Levo and T3 you were taking, and what your actual result and reference range are and your dose of Levo and T3 now you are feeling unwell.

Shug1974 profile image
Shug1974 in reply to SeasideSusie

Hi, sorry very late reply. I used to be on 125 a day on Levothyroxine and 12.5 T3 which i source my self and felt so much better and sex drive was back. My TSH has always been 0.005 mU/L. My T4 was 18 (9-18)range normal at the time and MY FT3 5.4 PMPL/L ( 3.1-6.8)

T4 range has since changed from 17.5.18 to (7.9-14). Since the change he has reduced my Levothyroxine to 100mg a day. My TSH still at 0.005mU/l. My ft3 same as above but my ft4 is now 15.3pmpl/L. Since the reduction all my thyroid symptoms have come back. I have put on 1.5 stones with in a month and no matter what i do cant loose it. My endo is insisting on reducing my medication again due to my TSH levels and T4 being over range. I do suffer from hypertension due to a benign tumour on my right adrenal (condition called Conns syndrome) and had a partial thyroid removal due to a benign tumour on my thyroid gland. My Cortisol levels are 410 (185-624) My vitamin D3 levels have gone up from 50 to 85.1 nmol/L ( normal range >50.0) with supplementation.

Grateful for any advice.

Many thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply to Shug1974

Shug1974

Does your doctor know that you take T3? T3 tends to lower, often suppress, TSH so that is why your TSH is so low.

My T4 was 18 (9-18)range normal at the time and MY FT3 5.4 PMPL/L ( 3.1-6.8)

With these results your FT4 was 100% through range and your FT3 was 62% through range. When taking Levo plus T3, the T3 - as well as suppressing TSH - tends to lower FT4. So to have your FT4 at 100% through range may be too much.

Your result of FT4 15.3 (7.9-14) shows it to be over range at 121% and your FT3 is still 62% through range as it's the same result and range as before.

To me these new results show that you are overmedicated with Levo and possibly undermedicated with T3. It's low T3 that causes symptoms and makes weight loss difficult, and although 62% of range isn't bad at all, you may need it higher. Bear in mind that over medication with Levo can also be causing symptoms. So it would be worth reducing Levo to get your FT4 down in range and add maybe an extra 6.25mcg T3 and see how things are then. Don't change both at once, reduce the Levo first, wait at least 2 weeks, possibly longer for it to start reducing (remember that Levo has a half life of 7 days) then add the extra T3. Retest 6-8 weeks after the last dose change.

As an example, I take Levo plus T3, it took me many, many months of tweaking doses to discover that I need both FT4 and FT3 around 75% through range. Some people are well with a much lower FT4, it's an individual thing, but your current result with such a high FT4 is, I believe, part of your problem.

I can't help with your cortisol result or your adrenal condition I'm afraid, but your Vit D is still below the optimal level according to the Vit D Council and the Vit D Society who recommend a level of 125nmol/L and 100-150nmol/L respectively.

You also need to know your levels of B12, folate and Ferritin.

Always remember to do your thyroid tests early morning, no later than 9am, after an overnight fast from evening meal/supper the night before, drink water only before the test, and take last dose of Levo 24 hours before the blood draw and T3 8-12 hours before the blood draw. If you take a B Complex containing Biotin (B7) or Biotin as a stand alone supplement, leave that off for 7 days before any blood test as it can cause false results.

Shug1974 profile image
Shug1974 in reply to SeasideSusie

Thanks for getting back. I am already taking 1000 I.U of vitamin D and some times alternate to 2000 I.U. Will start taking 2000 I.U. Will take your suggestion of reducing T4 and increase the T3. My endocrinologist is aware that i am taking T3 and have suggested that taking T3 is causing my TSH to be suppressed but he fails to be leave it is the case.

Any way thanks again for getting back.

SlowDragon profile image
SlowDragonAdministrator

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 if Thyroid antibodies are raised

Vitamin levels often need regular supplements to maintain adequate levels

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If also on T3, make sure to take last dose 12 hours exactly prior to test

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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Bloating, and gut symptoms suggest Hashimoto's and often gluten intolerance

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

If you order repeat medication from you GP it is easily ordered a week to ten days early without being noticed, this can enable you to increase your dose a bit. It is important that you are taking the dose of medication that makes you feel well.I would like to be able to remove your endos thyroid for him and put him on a too low dose of levo. It should happen to all endos as part of their training.

Shug1974 profile image
Shug1974

Thank you so much for the information. Will look into it. I do suffer from acid reflux and it's due to a hiatus hernia. Think your right about my gut problem cause have been taking Ranitidine twice a day for many years. I am having to supplement Vitamin D as was deficient at one point but as it's on the lower end and just about within range. Haven't had Vit b12 tested an the last time my ferritin was checked it was at the very lower end of the range. Thank you so much again.

in reply to Shug1974

I have a horrible stomach (Gerd) and IBS my entire life and several months ago I started using a powdered probiotic and Bio Kefir for digestion in my morning smoothie and I think for me it's been a miracle I no longer stress about taking my 40mg prilosec first thing in the morning which as you know interferes with thyroid meds now I can take it as my last pill of the day "Hours" after my last thyroid pill.... never been able to go entire day without stomach pill.

Treepie profile image
Treepie

Be careful about the low acid suggestion,I have recently been diagnosed with hiatus hernia,ulcers and Barretts oesophagus .The low acid solutions did nothing for me .Pretty sure it is high acid burning the inside in my case.

But also having to reconsider gluten having said for 3 years that I have noted no effect of gluten ....but maybe it takes a while.Attempting gluten free.

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