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Subclinical Hypothyroidism

(19 Posts)
GiraffesAndSunflowers Sun 28-Jul-19 17:48:04

Hi, I have had a lot of blood tests recently due to extreme tiredness. I've felt tired in the past when I've been anaemic but it now feels it is at the worst it has ever been.

I'm 29 and having to lie down in the middle of the day, and I feel like it is starting to impact on my life because I can't do everything I want to do as I'm just too tired. Also I know if I do something one day I will be too exhausted to do anything the next day.

I am currently anaemic but my iron levels are improving with iron tablets, so I feel like that is managed at the moment. I also have low white blood cells which are currently being monitored, no explanation for that really, I think they've always been on the low side.

But I've been told I have subclinical hypothyroidism. And I just feel so upset and frustrated with it as my gp has acknowledged that this is probably the cause of my symptoms, yet has said they can only treat when my TSH levels are 10. And for now they will just test every 6 to 12 months to monitor it.

My TSH is currently 7.2 and my T4 is 13.8. So it is my TSH that is the issue.

I understand they must have their reasons for not treating it until it gets to a certain point, but I don't know what else to do. I feel awful, it is impacting my day to day life, but apparently there is nothing they can do.

Does anyone have any experience with this. Is it just a case of waiting for it to get worse before they will treat or are there other options available?

Thanks.

HebeMumsnet (MNHQ) Mon 29-Jul-19 12:54:06

flowers for you, OP. That sounds horrible.

We're just bumping this for you this morning in hopes someone might be about who knows more than us on the subject.

granadagirl Mon 29-Jul-19 13:07:25

What about seeing someone private? They may be able to prescribe?
Bit like people who see psychiatric dr can be prescribed meds that a Gp can’t

NaToth Mon 29-Jul-19 13:13:36

With a TSH over range (but less than the apparently magical 10) and symptoms, they should treat you. Your GP needs to get familiar with the NICE Clinical Knowledge Summary.

CaptainJaneway62 Mon 29-Jul-19 13:29:38

This is absolutely horrendous for you and for many others left in this situation for medication that costs pennies but without it peoples lives are being destroyed...unable to work or even function on a daily basis.

You can buy Levothyroxine OTC in other countries and people actually go abroad to get it.

Also people treat themselves with natural desiccated thyroid)this was what was prescribed before drug company introduced Levothyroxine) which is also bought from overseas(Canada usually).
There is a protocol to follow and if you look at health unlocked forum or STTM forum there is loads of advice on there on how to do it.

At 29years old this is a complete travesty for you being fobbed of by GPs who refuse to treat symptoms but go off TSH results...a test that was devised specifically to monitor the drug Levothyroxine.

Being under medicated causes horrendous symptoms.

Take back your life and start self treating or you will just get worse.

CaptainJaneway62 Mon 29-Jul-19 13:39:29

You could also demand a referral to see an Endocrinologist which is your right. If not get a private referral appointment(most Endos do both private and NHS work)
They should treat you with Thyroxine meds and they override the GP.

I was in this situation for 15years with undiagnosed pituitary dysfunction and am now treated with various hormones including Levothyroxine via the Endocrinologist.
My GP would not treat the Hypothyroidism or investigate hormonal imbalance and was misdiagnosed with CFS...lost my career, home, friends and family...I would not wish this situation on any one!

Good Luck @GiraffesAndSunflowers

SinkGirl Mon 29-Jul-19 13:49:31

The NICE guidelines state that if your TSH is above 4 and you have symptoms they can trial treatment. Print off the guidelines and take them with you.

When you go for your next test, book it as early in the morning as possible and make sure you’re fasting. Also get them to check your thyroid antibodies - if they’re out of range they need to treat you regardless of TSH

I’m in a similar boat, have had all the symptoms for years but results are in normal range so they’ll do nothing. I’ve hsd one private test where TSH is 5.95 and the others all around 3.9 - every time the GP checks it, it’s around 2. I’ve been stuck like this for years. Years ago I had one GP test where they said I had subclinical hypothyroidism but I didn’t push it. Don’t hang about, make another appointment and take the guidelines with you.

SinkGirl Mon 29-Jul-19 13:50:57

I was in this situation for 15years with undiagnosed pituitary dysfunction and am now treated with various hormones including Levothyroxine via the Endocrinologist. My GP would not treat the Hypothyroidism or investigate hormonal imbalance and was misdiagnosed with CFS...lost my career, home, friends and family...I would not wish this situation on any one!

This is exactly me. I know it’s hormonal as symptoms vary with my cycle but I’m getting nowhere. It’s been 12 years this year.

GiraffesAndSunflowers Mon 29-Jul-19 14:34:38

Thank you so much everyone, can't tell you how nice it feels for people to understand and not act like it's in my head! The GP I spoke to just made me feel like I was being dramatic and that it is so common and I just need to get on with it.

But I've had to take time off work, only a few days but before then I'd never had a day of sick, it takes a lot for me to call in sick.

I feel like I'm walking through treacle and sometimes have to stop when walking up the stairs.

I know a little bit about the nice guidelines but my sister had a similar situation and took a print out with her and was pretty much laughed out of the room. So I feel like that's what will happen to me.

But I didn't realise I could ask for a referral, I think that will have to be my next step. I also didn't know it was better to fast before the blood test so that is helpful, thank you!

My blood tests consistently come back around this level so it's not like it's just a one off, just feel massively fobbed off that potentially they expect me to wait a year feeling like this.

Purplequalitystreet Mon 29-Jul-19 15:24:26

Hi. I was diagnosed with this a couple of years ago. At the time, we were TTC and I asked the GP whether it can affect fertility. Turns out it can, so my GP wrote to an endocrinologist who said I should be put on a low dose. If you are planning on having children over the next few years, I would advise asking to be referred.

GiraffesAndSunflowers Mon 29-Jul-19 15:50:54

That is definitely another concern of mine because me and my husband are planning on having children in the next couple of years so would want it under control by then at least.

SinkGirl Mon 29-Jul-19 16:27:05

TSH is meant to be under 2.5 if you’re TTC, again according to the NICE guidelines.

They should absolutely not be laughing you out of the room if you cite the guidelines and if they do then complain to PALS / the practice manager. Have a look at the thyroid U.K. website.

It’s not just the fasting that’s important but also the time of day. TSH levels peak in the middle of the night and halve by the afternoon.

DontBuyANewMumCashmere Mon 29-Jul-19 16:35:30

I only found out I had this after I had 4 recurrent miscarriages. I had previously had a very straightforward pg and birth with a successful baby, so the MCs were surprising, frustrating, confusing and devastating.

After 4, a consultant measured my TSH level which suggested sub clinical hypothyroidism.
I was proscribed Levothyroxine which got my TSH level to appropriate amount and immediately got pregnant and successfully kept this one.
I'm now 40+3 and impatiently waiting its impending arrival.

Funnily enough I had had no other (obvious) symptoms and put down any tiredness to having a toddler. I am active and was cycling, running, dog walking and stand up paddle boarding, so definitely not affecting my energy levels.

Good luck. I hope you get a prescription before having to go through fertility issues.
If you have already been diagnosed then hopefully when your GP finds out you're TTC they'll give you a dose. flowers

GiraffesAndSunflowers Tue 30-Jul-19 10:47:11

Thanks everyone, sorry so many of you have gone or are going through the same thing, it's awful.

Spoke to a different GP this morning, he listened to me and seemed to understand, which was nice. He said normally they wouldn't treat for Subclinal Hypothyroidism but as I'm struggling so much and have all the symptoms, and they've ruled everything else out, they will look at it.

So I'm getting another thyroid test done, as it's been nearly 6 weeks since my last one, and also getting my thyroid antibodies checked. Going to make sure I go as early as possible and fast the night before. Feeling more positive after that conversation.

SinkGirl Tue 30-Jul-19 17:52:18

That’s good news - you don’t need to fast the night before, just get the earliest appointment you can and in the morning don’t eat / drink other than water until afterwards. Plenty of water though as that helps the blood flow!

Best of luck, I’m glad the other doctor helped. The TSH cut off of 10 is 3-4 times the cut off for treatment in many other countries and results in thousands of people (mostly women) suffering unnecessary for years.

SinkGirl Tue 30-Jul-19 17:54:01

Oh also, do you smoke by any chance?

Smoking suppresses TSH and thyroid antibodies and boosts T4 production. Many people’s TSH and TPO antibodies only go out of range when they quit smoking. Definitely worth stopping in order to help get diagnosed if you do smoke smile

GiraffesAndSunflowers Tue 30-Jul-19 18:24:16

I don't smoke, never have. That's good to know I don't need to fast. There is a blood clinic near me that starts at 7am. The one I normally go to starts at 8.30am but I do want to go as early as possible so will go to the 7am one before work.

Fingers crossed this is the start of moving forward with it all.

GiraffesAndSunflowers Mon 05-Aug-19 15:46:12

Just thought I would come back and update, got my results back today and my TSH is now 11, so will be seeing my dr this week to get some treatment started.

Just wanted to say thank you for everyones help, advice and support because it really has helped.

Teddybear45 Mon 05-Aug-19 15:49:01

If you’re ttc then they need to test for antibodies too, as they also need to be taken into consideration when planning your dose. Antibodies can cause both early and late miscarriages and also hypothyroidism in the child after birth and you would need to be consultant led during any pregnancy.

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