Talk to me about under active thyroid and tiredness

[CapitanSandy]

Long time lurker occasional poster.

Over the last couple of months I’ve been feeling so so tired and fatigued and having heart palpitations on and off. ECG clear
I’ve just requested online access so I can see all my blood test results.

From the blood tests I had last month the only thing that came back borderline was my thyroid panel. TSH was 5.0 (range27-4.5) and my T4 was 16(range 11-23). No treatment just advised to get it retested in 3 months.

Is this under active? Is there anything I can do to boost it naturally?

It looks like my ferritin is on the low side 22.8
(range 20-130) and folate is 3.6 (range 2-18)
I’m not sure what folate is. I’m taking high strength Vitamin D tablets daily too.

My hairs falling out, I’m always cold and just feel exhausted despite 8 hours sleep, water and a healthy ish diet.

I have quite a demanding job that involves evening shifts and I’m tired by 5pm! Surely it’s not normal to feel this tired at 30 years old? ( not peri menopausal, or pregnant).

OP you have an under active thyroid at 5 if their lab range goes to 4.5, no question about it.

You will have to chance your gp to prescribe. Don’t let it go, I was very symptomatic at 5 also.

I found the nhs service very lacking in this regard. I have private health insurance and I went to an endocrinologist. Found out I have hashimoto’s, she put me on 100mg (gp had prescribed 25 and “see how you feel in six months”, she also put me in on iron, VitD etc. They are all related in terms of how you can absorb them - if you are deficient in one it will affect how you convert and absorb another.

My GP told me there was “no relationship” between VitD and thyroid hormone uptake. Luckily DP is a doctor and assured me otherwise! She was blatantly incorrect.

Don’t be fobbed off just because it’s “not on the nhs list”.

I felt utterly shit, exhausted in the shower every morning, never fully woke up, the brain fog was appalling - I thought I was just going stupid. I couldn’t think up an idea or respond in conversations (big part of my job). It was mind boggling.

No amount of sleep shook it off. Physically i was itching at my skin - actually that was the original symptom I took to the gp they led to blood tests! And some hair loss. Oh when I think back on it, yikes, horrible time!

Bloods done OP, and push to be at the optimum end of the range - this is important (TSH is optimised as closer to 1 as possible).

OP you’re doing a great job of advocating for yourself! Well done getting the tests done. Did they test T3 or T4 also?

@KimDealsThank so much for your kind reply. Reading your post I can really resonate with a few of your symptoms. The brain fog and exhaustion is unreal at times.
Yes my T3 was 4.91 and T4 16.1.

Do you know the reason behind waiting 3 months for each retest? I’ve had raised TSH 3 times in the last 5 years now.

Forgot to say antibodies all normal so not Hashimotos

Sorry to gatecrash this thread, but was going to start my own.

I have been fobbed off by my GP for years over this issue, and have been struggling so much with feeling so grim while working from home, brain fog, etc.

I am in DH's country on holiday and had full blood test done which shows underactive thyroid. I am so bloody relieved in many ways as I was starting to think I had dementia or something.

Why is it so hard to get a diagnosis and treatment for this in the UK, when everything I have read indicates it is fairly common?

I feel your pain OP. I had a reading of 5 and one was 7. It’s always above 4 but the GP isn’t interested. Interestingly my folate is also low.

They say it’s fibromialgia. I also have hypertension. Just done a sleep study for sleep apnea as I’m tired all the time

@notaflyingmonkey

Why is it so hard to get a diagnosis and treatment for this in the UK, when everything I have read indicates it is fairly common?

I’m going to guess it’s because if diagnosed with this you are eligible for free prescriptions

What time of say did you have the blood tests done? Ideally early morning
Also if you some nicotine suppresses TSH.

I went from within range at 2.5 to 44.6 because I quit smoking in between

Ah I already have free prescriptions due to a life long disability. From what I’ve read on here it seems a real fight to get the treatment needed

@ArianaDumbledore

What time of say did you have the blood tests done? Ideally early morning Also if you some nicotine suppresses TSH.

I went from within range at 2.5 to 44.6 because I quit smoking in between

Oh no… I do smoke. I wonder if that’s what going on for me

Don't smoke for 24hrs before and get test done early morning.

I had thyroid antibodies but because my TSH wasn't showing out of range they just were monitoring.

I have not read the thread, but tiredness, coldness and hair falling out are symptoms of both underactive thyroid and anaemia. I would suggest you get both treated. I appreciate you are just above normal for iron, but you may find you feel considerably better if you supplement.

OP, look at stopthethyroidmadness.com. There's a book of the same name. They explain how to optimise your iron levels etc so thyroid treatments actually help. The NHS is brilliant, but they're utterly shit on thyroids, and as usual, it's adult women that go over tired and unde4 diagnosed.

My TSH has fluctuated between 5 and 8 over the past few years, so has been classed as subclinical underactive thyroid.

I finally persueded GP to try me on levothyroxine, starting on 25mcg, and I feel even worse than before. My next blood test isn't due until December. All I can think is that anemia is causing the tiredness more than my thyroid. I take iron daily but my ferritin is always bottom end of the range. I'm 30, and it's so depressing to feel like this. In the space of a few years I've gone from being fit and healthy, doing lots of cardio, to piling on several stone and shuffling around, too tired to do any strenuous exercise and constantly sleepy.

I've read that Cushing's Disease can suppress TSH and about 50% of people rho have Cushing's also have hypothyroidism. Though unfortunately I think the diagnosis for Cushing's can be quite difficult too.

A long over due update on this thread.

Finally had blood test redone to check TSH levels.
My TSH has gone up to 5.6(range 0.27-4.5) and my T4 has dropped a bit from 16 in August to 13 now. Range (11-23)
I’m still really tired, cold, putting on weight anxious.

It’s looking like under active thyroid isn’t it?Shit. I haven’t spoken to a doctor yet just noticed the results on the NHS app

How do you feel on medication? I’m worried about any medication making me feel anxious.

Hi @CapitanSandy I would say you definitely need to be proactive & request a GP consult with those results.
As you can tell from the thread, thyroid care is notoriously poor in the UK. Poor practices like only treating when TSH is over 10 is terrible but common. Unfortunately, doctors seem to treat to blood results, rather than according to symptoms. You are symptomatic - look up symptoms of hypothyroidism & tick off how many you have. Brain fog, cold hands & feet and depression are all related to low thyroid hormones. You low stored iron level (ferritin) is due to the thyroid causing low levels of stomach acid so iron isn't absorbed so well. Thinning hair & losing the outer 1/3 of eyebrows can be common, so can heavy periods, decreased fertility & difficulties with pregnancies. None of these things will go away on their own and they will get worse & make you feel worse. The tiredness isn't just feeling a bit tired. I explained it to the GP as if I was sat on the sofa & it caught fire, I would question whether I'd got the energy to get off the sofa - it really is that bad.
The best thing you can do is read up widely around this condition & go to the GP with a list of questions/ requests. Ask if they can test your thyroid antibodies as they are significant if positive as it means you have an autoimmune thyroid condition. Please do not be fobbed off - read up and stand your ground. Ask for a trial of Thyroxine to see if your symptoms ease. It can take a while to get the dose right. I was diagnosed aged 31 but had spent many years in my 20s feeling absolutely dreadful - no energy or enthusiasm to do anything. The GP unfortunately was quite offhand about it all, despite my bloods & symptoms showing very clearly that I was hypothyroid with Hasimotos disease. When I asked for Thyroxine, she shrugged & said you can try it if you want. When I said we'll what would happen if I didn't have Thyroxine with those results, she said it would come to the point where you wouldn't be able to move off the sofa & you would probably need admitting Crazy situation! I know it's hard but you will feel so much better if you are assertive & take control of your health. Show the GP your private blood results so they know that you are concerned. Search the internet for reliable sources of information to guide you. Good luck OP, it can get better.

Hi. I've been on this medication for 20 years so it's been a while. I don't remember it making me feel anxious although it did take a few months to get the dose just right. I do remember feeling better.

Thank you for taking the time to reply. Everyone’s advice and experiences has been so helpful.

Reading up on it more I have a lot of the symptoms apart from my eyebrows.
For my it’s the tiredness and lack of enthusiasm. Everything feels like a big effort.
It’s been quite a difficult couple of years so I wasn’t sure what was anxiety, life or my disability

Deep down I knew the way I feel wasn’t normal but I avoided it because health and medical things make me really anxious. Even going to doctors makes my heart race. This has been a longstanding thing but has got worse over the last couple of years.

Luckily I don’t have Hashimotos and my ferritin is better than it was. I think I might ask about my folate levels again as they weren’t tested this time but seem a bit low.

I’m going to book a doctors appointment armed with the NICE guidelines someone mentioned and hope that helps Deep breaths!!

Well that appointment felt pointless and frustrating! It was a phone appointment and the doctor I spoke to doesn’t think my thyroid needs treating.
Here are my results from last weeks blood test

TSH 5.6 (was 5.0 in August and 4.9 in October)
FT4 13.7(was 16.2 in October)
T3 was not measured this time.

The doctor thinks all my symptoms (fatigue, cold weight gain inability to lose weight) all point to a Vitamin D deficiency. My Vitamin D level is around 40 I think.

Obviously I’m not medically trained but when I had a bad vitamin D deficiency in 2018 it was 9 I didn’t feel like this!!

I’m having a blood test next week to check Vitamin D and can have my thyroid tested again in 6 months.

I’ve had a cry this morning I feel like no one is listening or understands. What should do next? Any advice/ support is greatly appreciated

www.nice.org.uk/guidance/ng145/chapter/Recommendations

Section 1.5.4

List of symptoms
thyroiduk.org/if-you-are-undiagnosed/hypothyroid-signs-and-symptoms/

Hound GP, see another GP or look for private GP

Personally I self medicated to start with as I was left for 10 years after RAI without meds, felt like I was dying. Read up as much info then get onto the GP quoting NICE guidelines and request levothyroxine. Good luck!

Thank you for replying. Sorry to hear you were left without medication that’s awful. I think I’m going to look into a private GP.

Hi @CapitanSandy I posted a while back .. I’m so sorry to hear your GP is sitting there doing nothing. Can you either see a different one in the practice, or pay for private? (I know, expensive).

VitD and thyroid hormones are related but one will not cure the other - you need to tackle both.

Maddens me that GPS fob people off like this - you are already out of range and very symptomatic!

Your TSH is definitely too high - mine needs to be 1 or below to feel well. I struggled to get diagnosed and eventually saw Dr Marion Gluck privately who took one look at me and prescribed thyroxine as I was so puffy. I used to source NDT as prefer it to thyroxine but it’s really hard to get hold of post pandemic so now combine Levo with a supplement called metavive which is literally freeze dried pig thyroid - you can buy it online and it doesn’t need a prescription so might be worth trying?