ERATIC T4 LEVELS BUT NORMAL TSH

[ninja1]

I have been without my thyroid gland for 23 years without any great problems until about the last 2 years Since last July the doctors have been unable to regulate my medication to bring my T4 into normal level. One minute its too much T4 next its not enough.

I was feeling very unwell a couple of weeks ago, heart rate was over 120 when I was just sitting there. I was feeling short of breath when I walked The GP sent me straight to hospital where I had a chest xray, ct scan of the chest with dye, ecg, blood tests including TSH. The tests all came back clear. With these symptoms I immediately thought too much T4 but I was told thyroid was ok and not responsible for the tachycardia. I was given proproponol to take on demand.

As the week went on my symptoms were getting worse. I again asked about the T4 and was told everything was ok The only test on the thyroid had been the TSH so she didn't know what the T4 or T3 was as they don't do that test if the TSH is ok.

A further couple of weeks went by and I was feeling really ill. Even my bowels were becoming overactive the shortness of breath was worse, I could hardly get up the stairs The fit bit I wear was off the scale like I was working out in the gym even at night when I was sleeping. I decided I needed my T4 and T3 checking so I sent for bloods at Blue Horizon.

Results as follows:

TSH 1.26 0.27 - 4.2

FT4 26.8 H 12-22

FT3 5.9 3.1-6.8

This is the third time this has happened and twice I have been sent to hospital at great expense to the NHS when just checking the T4 would have helped.

I am at a loss as to why this swing in my T3 and T4 keeps happening and not show up in my TSH. I am under the endocrinologist for overactive adrenals and Im not sure if this could impact on my thyroid levels. Unfortunately my return appointment is not until May

I sometimes think I notice a change when I renew my medication. I currently take almus from Boots. Im wondering if I should try a different brand.

What is the most common brand of levo do people take?

[SlowDragon Administrator]

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

Your adrenals are likely trying to compensate for poor thyroid

Common to need addition of small dose of T3 to get more stable blood levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose 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)

Is this how you do your tests?

Ask GP to test vitamins and thyroid antibodies

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

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.

come back with vitamin and antibodies test results when you have them

[ninja1 in reply to SlowDragon]

can I get antibodies when I have had a total thyroidectomy? My T3 looks ok near the top end of the range would taking t3 not take that too high. Can I just stop taking Levo for a couple of days to reduce the T4 or do I have to do it gradually by reducing 25.

[SlowDragon Administrator in reply to ninja1]

Perhaps try slightly less Levothyroxine. Cut by just 12.5mcg to 125mcg and 150mcg alternate days

You may find it easier to very very slowly cut the propranolol down after going strictly gluten free

I was stuck on propranolol for almost 20 years. Couldn't stop until vitamins optimal and strictly gluten free. It has to be weened off very very slowly over many weeks/months

Or supplementing magnesium may be necessary , especially if vitamin D is low. Masses of posts on here about magnesium

Getting vitamins tested and supplementing to bring to optimal levels is often first step

Post results when you get them

[diogenes Remembering]

If you are still taking propranolol, it will be inhibiting T4-T3 conversion, so that your FT4 will rise. Perhaps this is the reason for elevation in FT4. If so you cannot drop the drug straightaway - it has to be gradual, otherwise you get side effects.

[ninja1 in reply to diogenes]

I only have to take it on demand like in the middle of the night when my pulse races and wakes me up . This high pulse problem is intermittent. FT4 26,8 now but four weeks ago it was 14 and I never altered my meds I just don't know where these surges are coming from

[danym]

I'm having the same issues, please let me know what you find out. Did they test your reverse t3, mine is elevated as well.

[ninja1]

No I just got the basics. I saw the GP this morning and she is sending me back to the endocrinologist. I have a return appointment for May so she is asking them to bring it forward. She thinks my adrenals are playing up again as my blood pressure is very high. I asked her about why they only do the TSH and nothing else when they know my TSH never truly reflects the levels. She says that no matter how many times they request full panel the labs don't do it unless TSH is out of range. Apparently it was the new way forward to save money. I think my chest xray, chest ct scan with dye, 3 ecgs, bloods tests and a day and a half in a and e would cost more. She said if I hadn't heard from endocrine by the end of the week to ring the consultant's secretary. I will let you know what the outcome is. Last time I was like this I had to have a nuclear MIGB scan and two adbdomen scans looking for a problem with my adrenals so hope I don't have to do that again.

[ninja1 in reply to ninja1]

I forgot to mention that the endocrinologist told me never to mix brands. The chemist still keeps mixing my brands but the GP said if I find a brand I like she will mark the prescription to say they have to dispense as written so that's a way forward. Sick of getting a bag with allsorts in it