What could possibly be making me so tired? I need new ideas please!

[thelongroad]

For about 18 months now I've been overcome with fatigue every afternoon. Most days I literally cannot get through without having a nap - I have even fallen asleep in the car while waiting for DCs. It is an absolute utter exhaustion unlike anything I've ever known before.

A year ago I finally went to the doc to get it checked out. The fact my nails were splintering made me think it was probably iron related.
Blood results showed severe iron deficiency AND underactive thyroid (since diagnosed as Hashimoto's).
I was put on iron and thyroid meds immediately.

A few weeks later, I had a 2 week period where I suddenly felt a LOT better and didn't need to sleep every afternoon. And then it went back to how it had been with the tiredness.
My nails grew and were good by autumn.
And then they just fell apart again.

During all this I've had numerous blood tests. All showed iron was very low but within range, thyroid was steadily improving. We increased meds as I still had all the symptoms. I also asked for Vit D and B12 to be checked - D was very low, so have drops for that now. B12 and everything else they checked was fine.

A month ago I went back AGAIN to see different doc as I am still not seeing any improvement with the tiredness. Nails are very slowly getting stronger. But I am still exactly the same: every afternoon I essentially zonk out on the couch. Doc suggests waiting to see if it "gets better" as blood results do show improvement but I think - it's been a YEAR, surely there should be some change in symptoms by now?

What the fuck could it be? I can't take more iron - firstly I have to pay for it myself and it's quite expensive at that dosage, secondly it's a nightmare juggling the dietary requirements with the 3x a day iron (and obvs avoiding the thyroid meds too). It's also NOT HELPING.

Does anyone have any ideas at all? I'm at my wit's end.

Bump

The only thing I can suggest is getting iron supplements from a herbalist. They’re not as strong, but much better absorbed than the ferrous sulphate from the doc. I get one called viridian, and it doesn’t upset my stomach or make my poo black but it does the job. I’ve come back from a huge bleed with just that. Are you avoiding tea around taking the iron? (I’m sure you are) plus I take it with orange juice to help absorb.

Hmm I am not a medic but just for ideas to exclude

• Sleep Apnoea?
• Pre-diabetes?
• Long covid?

Also are drops for vit D enough to do the job

But obvs its getting the thyroid meds and iron right that's the priority. Are there any Hashimotos forums you can ask on?

@Parisj is right - here’s me assuming it’s iron because it was for me. There are lots of other reasons.

So I've just had a blood screen and out came......low testosterone. Wtf? So, go back and ask them to check everything. With me my vit D is low and my iron as well. Sometimes it's a combination of things.

How old are you?

I was similar and a sleep study identified sleep apnea

What type of iron are you taking?
What type of vitamin D are you taking? Is the iron mixed with vitamin C? As it needs to be for absorption.

Look at coeliacs disease. Whole range of symptoms with vitamin deficiency being a red flag to get checked.

Is it a dozy kind of sleep? Are you itchy? IBS?

Check what other bloods were taken.

Low vitamin D, low Folate and low B12 can also make you feel like this and sometimes go hand in hand with thyroid issues but aren’t always checked.

But would need rechecking anyway. And HBA1C

Iron is no more effective at 3x a day than it is at once a day - each tablet contains more iron than we can possibly absorb a day.

So at the least you could save yourself some money and avoid the bowel issues by cutting out 2 iron tablets a day.

Have you thought about giving up sugar? When I've managed this for periods of time I've not needed an afternoon nap. Otherwise most days I can't get through the day without a sleep.

I have hashimotos and had the same bone crushing fatigue that you describe. The things that worked for me was getting my TSH under 2, and going mostly gluten free.

Do you have the actual numbers for your thyroid function tests? TSH and FT4 are the two they're likely to have done. You may be within the normal range but not at the optimal level yet. I find my TSH has to be at the bottom of the range or slightly below before I feel well.

Do you know your ferritin level? When pregnant I had this crushing fatigue. I had an HB in the low 70s and ferritin of 8. I ended up having iron infusions and that helped. Ferrous sulphate and ferrous fumarate did nothing for me because the ferritin was so low.

Like Terrazzo I was going to ask your ferritin level. 'Within range' could be 13 when you may be symptomatic until you get it way higher than that - ideally above 100. The quickest way to achieve that is via an iron infusion.

How low was the vitamin D? Mine was 10, and I took 20,000 for 8 weeks and now still take 4000 daily. You have to take a pretty hefty dose to get it up
I also have hashimotos

Blood sugars/dips/spikes done this to me. I have PCOS and insulin resistance. Once I started eating better it helped.

I have hashimotos. Have you considered giving up sugar and gluten? Those 2 make my symptoms much worse and since I gave them up 6 years ago, I feel human again. Life changer

When I was first diagnosed with Hashimotos it took two years to get my dose of levothyroxine right with a very variable TSH. I now know I feel like shit if my TSH is more than 2. Bone crushing fatigue and apathy is the main symptom and each time I got covid (3 times in two years) it set me back again.
Are you accessing your blood results? I found that what the GP was telling me was a normal TSH was only normal for someone without thyroid disease, I really had to fight to get it treated properly unfortunately.

I would agree with all the other posters. Thyroid-get your results (TSH,T4 and T3). Often the GP will state results are normal but they may not be in the optimum range. Join the Thyroid UK board in Health Unlocked and put a post on there with your blood results. There's loads of experts there who offer great advice. Make sure you are leaving a 4 hour gap between your thyroid meds and iron meds-they interact and the effectiveness of Levothyroxine will be reduced.
Iron-I would check your ferritin result. Should be around 100 optimally. Join The Iron Protocol on Facebook. Again lots of great advice.
Are you overweight? Do you exercise?

Hello everyone, sorry I was away and couldn't check the thread! Thank you so much to everyone who posted.

Latest blood results:
TSH 2.57 (previous results: 10.10, 3.86, 3.18, 2.73, 3.19)
Ferritin 67.5 (previous results: 6, 23, 26, 48, 29)

I can't find B12 and Folate results right now but they were both absolutely mid-range.

I'm not in the UK and they won't give me an iron transfusion unless I have that thing where you can't actually store iron (which apparently I don't have).

Apart from black poo, I have no side effects from 3x100mg iron tablets a day. I take them with juice, and avoid dairy and thyroid meds.

I was also on 20,000 Vit D for 5 weeks to get levels back up, am now on 5000 a day.

I take 75 Levothyroxin, originally started on 50.

I eat reasonably well - mainly pescatarian diet (for most of my life, nothing new) and I know how to cook for that. Since being diagnosed I have made an effort to eat meat in the hope of getting more iron that way. I don't eat a lot of sugar, don't drink fizzy drinks, eat lots of veg, nuts, pulses. I've cut down on soy since the thyroid issue but not cut it out completely eg I have soy milk in my coffee as I prefer the taste. I do drink a glass of wine every day, but rarely more, don't binge drink.

When diagnosed with Hashimoto's I cut out all gluten for weeks, but it made no difference at all. I still eat a fairly low-gluten diet though.
I don't exercise at all (never have), but I'm reasonably active and walk the dog every day.

I only had Covid for the first time a couple of weeks ago, with only light cold symptoms, so it's definitely not long Covid. I had 3x vax, no side-effects.

I sleep well at night, and wake up refreshed and not tired in the mornings.

Hair is not falling out at all. Neither is there excess hair where there shouldn't be.
I used to get VERY itchy, but that has completely stopped now.
Weight is pretty much back to normal again (was highish about a year ago, but I think getting thyroid under control has helped). BMI of 23.

Could it be menopause related? I am 50 and in the perimenopause. Periods are slowing down, occasionally skipping a month or two. Very heavy bleeding for a couple of days then light spotting. About 5 years ago (perimenopause) I was bleeding like you wouldn't believe, gyno put me on the mini pill to help, which it did. Came off that 2 years ago and as I say periods have been basically ok since then.