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).

Should add I was also found to have antibodies so possibly hashimotos but they won't refer me to a specialist. It was only found as I accidentally ended up at immunology instead of dermatology (don't ask) and they said while I was there as I had a blood disorder, could they take some bloods as my blood disorder is very rare
So even if I was in the wrong department, it worked out for the best!

@Chailatteplease, could I ask the name of your private endocrinologist please? By PM if that’s preferable.

[quote CapitanSandy]@Chailatteplease is a thyroid antibodies test included in a normal thyroid blood test? I’m presuming because you went to an endocrinologist it’s something extra that is tested.[/quote]
No it isn’t included on standard thyroid blood tests. You can request your GP order them, I just went via bupa because my GP was reluctant to treat me.

@DaxtheDestroyer I have them every 12 weeks tried a few years ago to get them more frequently but to no avail. Glad to hear self injecting has helped.

Yeah it’s only from writing out this thread that’s made me realise that there’s a few things to sort.
I’ll look into Hashimotos just in case.
I always think I’m being dramatic!

Iron bisglycinate can be easier on your digestive system, OP.
eg solgar.co.uk/products/solgar-gentle-iron-iron-bisglycinate-20-mg-vegetable-capsules

Although your thyroid is working harder to produce enough t4, you are still producing enough that this shouldn't be causing you to be symptomatic. I'm on 150mcg levothyroxine and my T4 is still only 10, and that's when I start to feel a bit ropey.

Vit d, vit b, ferritin and folate levels works be worth a check

Thank you for your replies everyone! Looking into this with limited medical knowledge, a little health anxiety and a foggy brain felt tricky but I already feel more informed and heard.

[quote SparklingLime]@Chailatteplease, could I ask the name of your private endocrinologist please? By PM if that’s preferable.[/quote]
Sure, will PM you now.

I have a raised tsh (4.6) and anti bodies although at a fairly low level. My T4 and the other one I don't remember are firmly in range though so drs won't medicate but test me annually. So I think it may be worth getting a full panel (I get mind privately through medichecks who are easy, efficient and you can usually get a code so if you could afford, may be worth looking into).

I actually am not hugely symptomatic at this level - am peri so everything gets a bit muddled up as so similar but my tsh has been lower and I've felt rougher so I think as others say it is worth testing.

I have tried gluten free and it didn't make much difference to me. My last medichecks drs report suggested low carb and pointed to a study to suggest this may help. Haven't read/tried it yet but may be worth researching???

I have under active thyroid and my ferritin levels have been v similar to yours, between 11-20 without taking iron. When I got diagnosed with hypothyroidism my TSH was over 17, and I felt like shit. It currently hovers between 1-2, and went up to 7 when I was pregnant but I have never felt particularly tired since starting medication, even when it was as high as 7. However, having such low ferritin absolutely makes me feel exactly as you describe. I started taking ferrous fumarate for a month but then gave up due to digestive symptoms. Then I started floradix 3 times per day for 2 months and got retested. My ferritin was up to 50 and I felt so much better. It can take up to 12 months of supplements to restore your ferritin to mid range. Also worth noting that with ferritin that low, you’d be eligible for a private iron infusion at a London based clinic for a couple of hundred pounds if that’s something you could afford. From my experience it’s definitely your low ferritin causing your symptoms. It will take a while to get it right but it’s worth persisting.

5 is not normal range, my endocrinologist put me on 50mcg levo when my levels were close to 4.8,
He suspected it was causing my irregular periods,
Periods are back to normal now,

Hashimotos is absolutely hellish and they promote Levothyroxine as the magic medicine that fixes all. Sometimes it doesn't. Ive had Hashimotos for years and quite frankly, it has completely changed my life and personality and not for the better. Gps- useless, they know nothing about thyroid. Endocrinologists useless and some of them are downright nasty. All the help and support is geared towards diabetes, 80 different treatments for diabetics. One for underactive thyroid and Levothyroxine doesn't work for everybody. I have been on it for years and still feel awful some days. The only help and support I got was from Thyroid UK. That is why I became a member of the charity and support it. Thyroid care(if you can call it that), is dire. Sadly, due to the Pandemic, I don't see things improving. I wouldn't wish thyroid trouble on my worst enemy.

I got thyroiditis and felt like shit. I discovered in Jun this was the issue. I was exhausted but also in pain in my neck, ear, jaw and head. I was put on a long course of steroids. I just came off them at the start of September then caught Covid. Now I don't know if it is long Covid or my thyroid or a combination of both that is making me feel dreadful. 😩

I have so many symptoms of under active thyroid. My GP is only doing email consults at the moment and has told me they won’t consider me as suitable for treatment unless my TSH is over 10!

Instead she put me on HRT which just made me worse and the pharmacist told me that the burning mouth with bleeding ulcers coukd be being caused by the progesterone (and it did improve when I stopped).

That GP has now left but I can’t get ANY form of consult with another one. I’ve tried changing surgeries but none of the others in the area are taking on new patients unless they are new to the area and aren’t registered anywhere.

[quote CapitanSandy]@DaxtheDestroyer I have them every 12 weeks tried a few years ago to get them more frequently but to no avail. Glad to hear self injecting has helped.

Yeah it’s only from writing out this thread that’s made me realise that there’s a few things to sort.
I’ll look into Hashimotos just in case.
I always think I’m being dramatic![/quote]
You may not be aware but the guidelines for b12 injections changed last year and they now state injections should be every 2-3 months. If you feel you need them more often, maybe try again with your surgery to get them to move to 2 monthly? cks.nice.org.uk/topics/anaemia-b12-folate-deficiency/management/management/
I haven't bothered as I self inject anyway.

I was told the same - no treatment until TSH is over 10. It's unbelievable, other countries treat you earlier. Mind you, you are normally told it is all in your head, or it's anxiety, or your over-eating and the top favourite- your depressed. People have gone to private doctors for treatment and pay through the nose because they are desperate. It's a disgrace.

@Gothichouse40

I was told the same - no treatment until TSH is over 10. It's unbelievable, other countries treat you earlier. Mind you, you are normally told it is all in your head, or it's anxiety, or your over-eating and the top favourite- your depressed. People have gone to private doctors for treatment and pay through the nose because they are desperate. It's a disgrace.

You’ve missed the favourite doctor’s reason - you’re menopausal !

I have Hashimoto’s (autoimmune under active thyroid) and get palpitations when my dose is too low. Push for referral to an endocrinologist as they will be able to do more detailed tests. Good luck!

TSH of 5 isn’t boardlune it’s under active

I would be feeling like walking through treacle at 5 and have had it at 6

was told the same - no treatment until TSH is over 10. It's unbelievable I didn’t know that !
I started taking medication at 36 so not menopausal but they were causing lots of issues, my period were so irregular,
my doctor says that even the guidelines most doctors follow are out of date, they now much prefer seeing a number under 4 ,
and if you are going through fertility treatments even lower ,
I have no idea why so many GPs are so reluctant in prescribing levo, it’s such a tiny tablet but makes a huge difference and can prevent further unnecessary investigations and treatments.

@Gothichouse40

Hashimotos is absolutely hellish and they promote Levothyroxine as the magic medicine that fixes all. Sometimes it doesn't. Ive had Hashimotos for years and quite frankly, it has completely changed my life and personality and not for the better. Gps- useless, they know nothing about thyroid. Endocrinologists useless and some of them are downright nasty. All the help and support is geared towards diabetes, 80 different treatments for diabetics. One for underactive thyroid and Levothyroxine doesn't work for everybody. I have been on it for years and still feel awful some days. The only help and support I got was from Thyroid UK. That is why I became a member of the charity and support it. Thyroid care(if you can call it that), is dire. Sadly, due to the Pandemic, I don't see things improving. I wouldn't wish thyroid trouble on my worst enemy.

I hear you 💐 it's fu*ng awful. People have no idea what it's like. It's like you are in a constant head fogginess. Takes ages to think of a response when someone's talking to you on worst days. I don't believe levothyroxine is doing anything in my own personal experience.

to everyone struggling at the moment.

I’m pretty sure I have central hypothyroidism. My TSH is 1.09 (0.27-4.2) and my FT4 is 9.1 (12-22) so classic signs of a pituitary problem. GP looks at TSH only and tells me I’m fine but I know damn well I’m not. I’ve been offered anti depressants for my health anxiety. Now saving up to see a private Endocrinologist who specialises in pituitary issues. Shouldn’t have to though.

I had 13 hours sleep last night and still feel tired🙄 ordered a thyroid panel blood test from Medichecks to see if that provides any answers.

Update I had a thyroid blood test done from Medichecks a bit pricey but a really good service. I had the test done in the morning if the morning if that means anything.

TSH is still slightly raised (4.9)
Slightly low Vitamin D 45
Low folate 1.95 Medichecks ranges are 3.96-19.45
I’m pleased my ferritin has gone up from 22 to 42 from remembering to take my prescribed iron tablets.

I’m going to get some folate over the counter to see if that helps.

What would you do next? The Medichecks doctor recommended getting vitamin D and folate up the retesting TSH in three months.

I’m due to get my TSH levels checked again at my doctors in a few weeks. Should I be looking to get some kind of treatment for the sub clinical underactive thyroid?

I’m sure Ive mentioned but I’m anxious in medical situations and not very good at advocating for myself.