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).

This is how I feel when my thyroid is underactive although I wouldn’t expect to be so symptomatic when my TSH was only at 5.

My endocrinologist likes to keep my TSH

Thank you for replying. It helps me feel like I’m not being dramatic. Can’t imagine how you felt with a TSH that high. Glad to hear you felt better quickly. I don’t know much about under active thyroid just read a few posts in here. Trying to avoid googling and freaking myself out!

I have low folate levels and have been prescribed folic acid. I understand it's a kind of anaemia. The (red?) blood cells become too large to transport oxygen around the body efficiently I think. I also take Levothyroxine for underactive thyroid at 75 mcg - recently increased because my levels were just outside the recommended levels. I've been taking thyroxine for three years.

I've been tired for years and achy, my hair was falling out in the shower, a handful of hair. After years of this my hair loss has finally slowed down after 2 months on folic acid.

Worth asking your doctor about both I'd think. I know the thyroid level here (UK) it's below 4, whereas in some countries it's below 2, so you could have symptoms but it not be low enough for them to treat it in the UK. I believe this is the problem I've had.

P.s. my TSH was also over a hundred.

Thanks so much for your helpful reply @Mrsbrownsbuoys. You’ve described how I’ve been feeling lately. Handfuls of hair coming out does feel a bit concerning. Sorry you’ve struggled with a high TSH too.
I’ll get some folic acid and see if that helps.
I had a high TSH in 2016 but that was seen as a one off with no treatment that time either.
I have pernicious anemia managed with B12 injections so I’m wondering if maybe I’m just prone to types of anemia.

How did you all cope with the tiredness? I don’t have any kids to run around after or anything like that.

It does sound like it could be your thyroid. Mine was tested initially at 5.5 and I was told to retest in 6 months by which time it was 45 ish (now on medication and a lot lower). Maybe ask if you can be retested sooner than 3 months?

I feel horrible if my TSH is over two. At five they should be giving you a trial of thyroxine, or even if they wait until the retest, they should be testing you for antibodies. If you have them then your thyroid function will almost certainly get worse not better. Don’t be fobbed off, I spent a whole decade being told my results were fine. My TSH was 8 when I was pregnant, i felt ghastly, but was told it was fine . Underactive thyroid when pregnant can harm the baby so I am still angry.
By the time i was medicated my TSH was nearly 30 and I was spending my days in a fog of tiredness and inertia.

Have just seen this is your second high TSH. Very obviously not a one off then . You need Levothyroxine.

I felt awful with a TSH of around 5 too, it’s not uncommon and doesn’t need to be in the hundreds to feel symptoms. I ended up seeing a private endocrinologist who tested antibodies, they came back in the thousands so was treated then (TSH had only gotten up to 6.5 by that point) autoimmune thyroid disease doesn’t get better on its own.

This is really insightful thank you. So sorry to hear you were fobbed off. It does seem like it can be hard to get treatment straight away.

My surgery isn’t doing blood tests at the moment so will probably have to wait until that’s back up and running.

I can’t remember the last time I had a clear mind and felt energised.
Is it possible for the thyroid to be sorted without medication at all?

@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.

I don’t know much about normal levels sorry but I suffer with an under active thyroid and am on 100 mg Levothyroxine. I can’t begin to put into words how utterly exhausted I was when my thyroid gave up… we are talking sleeping for 10/11 hours and still needing a 2-3 hour nap in the afternoon. I was also very low mood, nothing made me feel happy or even content. The weight started piling on as well. Good luck, I hope you get a blood test done soon because that’s necessary. Fight their decision not to, be very firm in explaining your symptoms. Good luck!

Worth a look at ThyroidUK. The forum can seem a bit overwhelming but if you post your results there are lots of ‘expert patients’ who should advise.

Lots of people advise going gluten-free, but I don’t think that’s conventional medical advise. Loads of supplementing and diet for low thyroid.

healthunlocked.com/thyroiduk/about

Mine wasn’t quite under when I was put on meds. The GP thought it best to catch it before I went under, rather than leaving it to go under and test again.

I was diagnosed with Hashimoto's thyroiditis at 22. Been feeling tired a long time. I tire easily. Can't keep the pace with others my age. Now almost 40. You do have my sympathies. Resting is about all you can do.

I was tired and had palpitations when my ferritin was low, but mine was 7.
I’m on ferrous Fumarate now and feel so much better.

If you can afford it you can get a thyroid panel done privately by post from eg Medichecks. They do regular discounts on their thyroid testing. It includes antibodies which you may find your GP is reluctant to do.

medichecks.com/products/advanced-thyroid-function-blood-test

Oh yes, the hair loss😩 I know all about it. Lose loads on a regular basis.

Sorry to gate crash but I have similar symptoms.

I’m getting told no concerns by GP.

Feb. Serum TSH level 1.36 miu/L [0.35 - 4.94]
March 24HR URINE FREE CORTISOL
24hr Urine Free Cortisol (UFC) 47 nmol/24hr [0.0 - 165.0]

Then these recently.

@GoodnightGrandma your GP sounds responsive and proactive which is great. Ours is a bit hit and miss. Although admittedly I’m not very good with medical stuff. Classic white coat syndrome when I go near a doctors! so I probably don’t explain myself as well as I could. I have put a bit of weight on but just thought that was lockdown and a sedentary lifestyle.

Back in 2016 an endocrinologist registrar was going to treat me as under active based on the symptoms. Then I got pregnant finally.

Mine was about 7.5 when they put me on 25mg levo (begrudgingly)
Funnily that didn't do anything
My haematology consultant asked my GP why they were still practicing homeopathic medicine given I'm 5ft 10 and could be up my levo to something more befitting
I'm on 75 now with a TSH of around 1.5. Still bloody knackered

TSH of 5 is definitely higher than the ideal and could well indicate hypothyroidism, and the cause of your symptoms. Can you phone your GP and request to try Levothyroxine? I’ve been taking it for several years, my TSH was around 10 when hypothyroidism was diagnosed and I had felt dreadful for years before that. Always really tired no matter how much I slept, anxious and low mood, dizzy spells, hair loss and struggled to lose weight. Added to that it caused fertility problems which was a really difficult thing to go through. Feel so much better since starting medication and had first baby last year which would have been impossible before.
I’m sure I’ve read that a low-carb diet is recommended to help but honestly it sounds like medication will help you. Agree Thyroid UK website has good information and advice.

@CapitanSandy, how often do you have your B12 injections? I have pernicious anaemia too and found that the 12 weekly ones were hopelessly inadequate for me to recover, they barely kept me ticking over. I self-inject now once a week and it's transformed my health.
I also bump along with low ferritin and high TSH as well. With pernicious anaemia, you are at higher risk of developing Hashimoto's disease which is an autoimmune disease that destroys your thyroid so I have regular thyroid checks. My TSH is high but not high enough yet to trigger treatment
There are basically a few things which could all be feeding into how you are feeling, it'd be worth tackling all of them

I’ve just started taking ferrous fernate again recently which hopefully will help a bit too. The last couple of years my ferritin has been as low as 9-30. But I don’t take the tablets regularly because the side effects can get a bit intense stomach wise.