Been an Hypothyroid (!) for 16 years - Now time to learn about the condition as my 21 year old daughter may have it!

[DadandDaughter]

Hi All

Firstly I know i'm probably not called a 'Hypothyroid', but thought it was the quickest way to describe myself!

I am a 40 year old male and in my early twenties I was diagnosed with Hypothyroidism - at roughly the same time I was also rushed into hospital with portal vein thrombosis and after a lengthy diagnosis period, and turning very yellow (!) I was given a stent.

To be honest I can't even remember being diagnosed with Hypothyroidism, as I suppose it was masked by my more serious condition at the time. I have since been rushed into hospital with multiple PE's in my lungs and because no one nows why I clot, I am now on life long warfarin.

Anyway back to my thyroid problem! Being a young dad and having serious health conditions meant that having a thyroid problem was not on my radar. It was just another tablet for me to take - and I honestly say up until now I have never done any research. I have totally trusted my GP.

So what has changed for me to all of a sudden to want to do research and become a member of your forum?? Well the simple answer is my daughter! She is 21 years old and for the last 3/4 years she has suffered from a lot of symptoms associated with the Thyroid. Her hair is brittle and falls out, she is always VERY tiered (but suffers from insomnia as well), she has very painful and heavey periods, she has difficulty concentrating and being motivated, her bones and muscle always ache, she has been diagnosed with depression (but refuses to take anti depressants - as she is too scared) the list is endless, she has so many symptoms.

I myself have recently been experiencing dizzy spells and my resting heart rate is 42 - so whilst trying to google why..........I discovered all the symptoms for under-active thyroid and that was how I realised that my daughter has so many of them.

So unlike me - I booked myself and daughter into our GP's. He was concerned about my low pulse and dizzy spells and booked an ECG (still waiting for the appointment) and on my request a thyroid test. My reading came back normal at 0.58 mui/L - does anyone know what that means? Because I am getting dizzy spells and low heart rate, does this reading look ok?

My daughter also asked for a test - and we are still waiting for her results. We put her tiredness down to being a teenage and depression down to having mental health problems - but she has so many of the symptoms it really does seem that she has an under-active thyroid - the only thing that is different is that her resting heart rate is very high 80+!?

Any help or advice would be greatly appreciated - in particular should I just accept my results are normal and look for different reason why my pulse is so low and I am suffering from dizzy spells?

[SeasideSusie Remembering]

Hi DadandDaughter, welcome to the forum.

Your result of 0.58 mui/L will be for the TSH test - Thyroid Stimulating Hormone. Unfortunately, this doesn't give the full picture. The full thyroid panel includes

TSH

FT4 (Free T4)

FT3 (Free T3)

Thyroid antibodies - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)

Very often, once diagnosed, only TSH is done. Doctors tend to dose by TSH alone, which is wrong. That actually tells them nothing about your thyroid hormone levels.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

The important tests are the thyroid hormone tests - FT4 and FT3 - which tells us if we have enough replacement hormone (when taking Levo) and whether the T4 is converting to T3. Unfortunately, doctors seem to have had an information bypass where this is concerned.

Many of us here do our own private tests to get the full thyroid panel. We have a couple of recommended labs and the tests can be done by fingerprick or venous blood draw if preferred.

Also very important, because we need optimal nutrient levels for thyroid hormone to work, are the following

Vit D

B12

Folate

Ferritin

As a first step, I would advise both you and your daughter to get the fulll thyroid/vitamin test, then make a new post with the results (include the reference ranges as these vary from lab to lab and we need them to interpret results). Members will comment and make helpful suggestions.

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

It's the same test so it doesn't really matter which you choose.

Also, have a look around ThyroidUK's main website (this is their forum) and you will find lots of information there. Start here and work down the purple menu on the left hand side

thyroiduk.org/tuk/about_the...

Any questions, just ask, members always happy to help.

[DadandDaughter in reply to SeasideSusie]

Thanks SeasideSuzie

I will definitely get our bloods done by one of the companies you suggested. I will wait to see what blood test come back for my daughter first - Im hoping at it's the first time that she has been tested that they have done all the test that you said should be done?!

Would I still book the blood test even though I am on Levo? If yes - should I take the blood at the end of the day (I take levo in the morning)? Do you think a blood prick would be sufficient - or should I book a 'proper' needle?

I've been doing some research - considering my recent symptoms of low pulse rate and dizzyness do you think my GP would refer me to an endocrinologist, or is there no chance?

Sorry for so many questions!

[SlowDragon Administrator in reply to DadandDaughter]

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Low vitamin levels are extremely common so get these tested

Recommend a Fitbit as a way of proving low heart rate

Come back with new post once you have results and ranges for both yourself and your daughter

[DadandDaughter in reply to SlowDragon]

Thanks Slow Dragon

I am gob smacked that our GP wouldn't know when the best time to test for TSH is!

Thanks for the info - much appreciated.

[Kipsy in reply to DadandDaughter]

Very few GPS realise that TSH follows a circadian rhythm, peaking in the early hours of the morning and tailing off significantly after 9am. They are also unaware that eating or drinking before the blood test can possibly lower your TSH. You want your result to be as high as possible in order for the GP to take notice so SlowDragon’s advice is spot on.