congenital hypothyroidism & hearing loss much later

[Katejo1963]

I was born with hypothyroidism and haven't had too many problems. However I have just had an apparent ear infection (hasn't responded to any AB's) and a hospital doctor suggested it might be caused by my underactive thyroid. The GP rejected the idea because my thyroid has been monitored and my levothyroxine adjusted whenever needed. I still have intermittent earache, constant blocked ear and hearing loss just in the left ear.

I am waiting for a follow up hospital appt. which keeps being delayed/postponed. While waiting I have read that sudden hearing loss in women over 50 with underactive thyroid is common. Is my hearing loss likely to be permanent Should I be paying for private treatment? I have contacted a private ENT practice but no reply yet.

[SlowDragon Administrator]

Welcome to the forum

Well there is often a current obsession by medics to reduce levothyroxine dose too low

What are your most recent thyroid and vitamin results

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Low vitamin levels become more common as we age

Important on levothyroxine to always have OPTIMAL vitamin levels

For full Thyroid evaluation you need TSH, FT4 and FT3

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially if not on high enough dose levothyroxine

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

[Katejo1963 in reply to SlowDragon]

I can only answer part of this. I am on 175 mcg Levothyroxine and yes it is always the same brand. I have a GP blood test booked now but have to wait 2 weeks. Can't get it any earlier. i don't have the results of my last test available. My practice doesn't make them accessible online to patients. I haven't been prescribed any vitamins. I have heard about medics reducing thyroxine doses too low/saying patients are within the normal range when they aren't (or are at the bottom).

[SlowDragon Administrator in reply to Katejo1963]

Is booked test early morning (ideally just before 9am)

Request they include testing vitamin D, folate, ferritin and B12

Very unlikely to get Ft3 tested…..but see what results you get

Then test privately anything missing

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

[Katejo1963 in reply to SlowDragon]

I am already registered online but my practice doesn't include any test results in my record. I have asked why and they just said that this option hasn't been made available to them yet. I haven't had a dose change in Levo for a long time (but have had repeated tests since it was last changed). My booked test is at 9.25am. I can't change that now because it will be delayed even further if I do.

[Katejo1963]

I have also messaged my GP practice to ask for the additional vitamin D, folate, ferritin and B12 to be added but I don't know whether they will agree.

[SlowDragon Administrator in reply to Katejo1963]

Meanwhile request copies of last few test results….last 1-2 years

[humanbean]

I don't know if your thyroid has anything to do with your hearing loss. I did wonder, depending on your symptoms, whether you might have this?

patient.info/ears-nose-thro...

I have this condition, but have never had a diagnosis, or treatment that achieves anything. The NHS just prescribes nasal sprays that make my ears hurt and do absolutely nothing useful.

I just found this on google but haven't read it - it does sound intriguing :

patient.info/forums/discuss...

[Katejo1963]

Thanks. I have had a quick read through. However I didn't have any cold virus immediately before. Also I have found out that sudden hearing loss can happen to patients with underactive thyroid (despite regular medication). Apparently quite common in women over 50 as I am.

[Brightness14]

It could be a Cholesteatoma you would have to test for it an ENT clinic to find out.

[pussycatwillow]

I have the same symptoms and was diagnosed with Eustachian Tube Dysfunction, just like Humanbean.

GP suggested I try something called Otovent, a small pressurised balloon. It helps a little.

The link that Humanbean sent is interesting.

[Katejo1963]

Hi Pussycatwillow. I have now arranged a private ENT appointment so I just hope it will help.