How bad can fatigue get in hypothyroidism? - Thyroid UK

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How bad can fatigue get in hypothyroidism?

jconnor123 profile image
25 Replies

I've been taking NDT for awhile and my blood work and temperatures are starting to improve, slowly. But I can't help but wonder if my fatigue is been caused by something else and the lack of thyroid hormone has just made it worse rather than been the cause of it

The fatigue hits me hardest around mid day, where I just start falling asleep and its usually so bad that I can't do anything and even walking becomes difficult. It usually lessens as the day goes on, but is this level of fatigue POSSIBLE with hypothyroidism? It is like my body is being weighed down and my energy levels are about 0/10.

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SeasideSusie profile image
SeasideSusieRemembering

jconnor123

Looking at your previous post you were undermedicated at the time. When on NDT it's usual for TSH to be low, even suppressed, FT4 lowish in range and FT3 in the upper part of it's range. So you need to keep increasing until you get there.

Also, you need to know your nutrient levels, low ferritin in particular can cause fatigue. Do you have current results for

Vit D

B12

Folate

Ferritin

jconnor123 profile image
jconnor123 in reply toSeasideSusie

These are my results from February this year , so might of changed a bit

Vitamin D : 98 nmol/L ( 75 - 250 )

B12 : 444 ng/L ( 211-911 )

Folate : 15.2 ug/L ( 5.4 - 24.0 )

Ferritin : 135 ug/L ( 10 - 322 )

SeasideSusie profile image
SeasideSusieRemembering in reply tojconnor123

jconnor123

Are you taking a B Complex? Your B12 could do with a boost.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml (which is the same as ng/L) to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

If you're not taking a B Complex then consider Thorne Basic B or Igennus Super B, this will raise your B12 and also maintain a good folate level.

jconnor123 profile image
jconnor123 in reply toSeasideSusie

You pee out any excess B12 and folate you don't use right? I will look into them brands and definitely get myself some today

SeasideSusie profile image
SeasideSusieRemembering in reply tojconnor123

B vitamins are water soluble so yes, any excess should be excreted.

NWA6 profile image
NWA6

It’s possible, totally! But only if you’re under or not optimally medicated. My last bout of hypo it feels like I’m wading through mud. Simple everyday tasks are such hard work. Sleepy in the afternoon, though process a little more difficult. The hypo before that was over a year ago and that one was serious fir months on end. Laying on the sofa, body aches, around 50 symtoms

thyroiduk.org/signs-symptom...

But when optimally treated I’m just like any other human without a thyroid condtion.

jconnor123 profile image
jconnor123 in reply toNWA6

Damn, it's crazy how the extremes can be. I'm definitely not optimally medicated yet, so I'll have to wait and see, but I would be surprised if the fatigue goes completely when I'm optimal. Hope it does though

NWA6 profile image
NWA6 in reply tojconnor123

It absolutely will go! Hypo tired is a different kind of tired. Being tired should be because you’ve done something with your day not just surviving!

222222Kc profile image
222222Kc

I feel the exact same and would welcome the answer

I thought I had experienced how awful it was following my hemi thyroidectomy in 1989 when my ½ thyroid failed to come back online for 3 months.

But I am currently experiencing something even worse, when a prescription drug I MUST take seems to be counteracting the NDT I also MUST take.

If I stop either "drug" I will be in A&E inside a week!

I am stuck with this until I get an operation, but that now seems unlikely until next year.

jconnor123 profile image
jconnor123 in reply to

Would it help if you didn't take them at the same time, have you asked a doctor?

tattybogle profile image
tattybogle

It can be so bad that you have to curl up on the grass under a tree in the car park in Conway Harbour ,and go to sleep while your friend takes the kids round the castle...... because you drove the car 50 miles to get there.

It can be so hard to walk up a slight incline that you end up walking sideways rather than uphill.

It can feel like walking into a 40 mph wind on the prom at Blackpool, but its not windy

You can be as exhausted as those people you see at the finish line of a marathon, who collapse on the floor and can't speak to the interviewer. But you just carried the shopping back from the supermarket.

It can be so hard to concentrate on the motorway that you have to drive at 48mph, because your eyes and head wont move fast enough to react if you drive at 60mph.

It can mean your children's memories of going to Cornwall include always stopping for 2 hours at the same services, and playing outside the van while you have a sleep for an hour and a half and a coffee, before you can go the rest of the way. And they arn't allowed to go down to the beach on the day you get there, because they have to put the tent up and make pot noodles for dinner because 'mummy won't be like a person again till tomorrow'

It can mean you drive in traffic in 2nd gear with a big distance between you and the cars in front..... because it's too hard to keep pushing the van's clutch out.

jconnor123 profile image
jconnor123 in reply totattybogle

Thank you

Helcaster profile image
Helcaster

The fatigue can be terrible, even writing an email can take 3 hours, then you need to nap. I've fallen asleep mid afternoon and woken up with a plate on my lap because I fell asleep sitting up eating my lunch. Everything seems to take 3 times longer to do. My partner would drive to a store, park, and then I would walk the short distance to the entrance and from then on be looking for somewhere to sit. If I go to the cinema I'm usually asleep before the adverts are finished, I've slept through plays and live music.

One thing to check though is your blood glucose, if it's high you will be very fatigued, you will pee a lot day and night. I'm pre diabetic and really have to cut carbs and cut out sugar, If I have a treat I can fall asleep after eating it, it's just not worth it.

jconnor123 profile image
jconnor123 in reply toHelcaster

Thank you, that gives me a good insight because I can relate to that level of fatigue a lot. I thought the vast majority of people just got some sort of mild fatigue that wasn't very intrusive to daily activities but it doesn't seem like thats the case at all. I know at my worst just standing up or even sitting down was tiring. I haven't been that extremely bad for awhile but it goes to show

Yeah I try my best to keep breakfast especially low sugar because that can definitely make the crashes worse I've found as well. Cutting out vegetable oils is good for diabetes I have read by the way.

Tina_Maria profile image
Tina_Maria in reply tojconnor123

Just to mention, if you are not properly medicated, your metabolism is slowed down significantly - this can lead to tiredness (sometime extreme, like having your battery drained a couple of hours after you got up), but other processes can also be impacted. Glucose levels can rise in the blood, as the body is not able to correctly process it, and cholesterol can also be high in these individuals, again due to the metabolism being slowed down. In susceptible individuals, this can actually put people in the pre-diabetic or even diabetic range. Before the all mighty TSH tests, doctors were actually diagnosing hypothyroidism through elevated cholesterol!

Once you are optimally medicated, glucose, cholesterol levels and fatigue will improve, hence it is very important to fight for the correct medication. Stay with it and it will get better!

Helcaster profile image
Helcaster in reply tojconnor123

jconnor123, I don't even eat porridge now, I found out it made my blood glucose peak quite high quite by accident as a paramedic took it. I eat cheese or mushroom omelette, or scrambled eggs on one piece of high fibre bread now for breakfast, I don't even like eggs lol, but I need the protein and iron.

Fatigue is something I have found the hardest to improve upon. I took levo for two years it didn't even get my temperature up, then I tried just T3, and now NDT with T3. I was doing well with Nature throid for 3 years, now it doesn't work for me. It took me 5 years to get anywhere near a normal temperature. Crashes happen for me when my temperature drops a lot, into the 35's degs and then I can't stay awake and my speech gets slurred. I've jut started Tru Thyroid and so far I'm not doing so well as when Nature Throid was a good NDT. I spent a chunk of last night awake with low temperatures again. If you have the same problem I would recommend trying a mixture of T3 and NDT.

Is olive oil still OK? I have that on salad, but it's the only oil I eat.

I really hope you improve, it can be a long slog.

jconnor123 profile image
jconnor123 in reply toHelcaster

I'm splitting up my tru thyroid three times a day now to prolong the t3 as much as possible but I think a lot of people do ok with just twice a day. Temps are rising but it's slow progress. I'm on 2 grains right now but honestly think I might get up to 3-4 grains at this rate, I really hope it works, been undermedicated for far too long. Only found out i was having thyroid troubles a few months ago , after many happy years of chronic symptoms

Yeah real olive oil is ok on salad. And as for the vegetable oils , I found out about how toxic they were from Dr Ray Peats work. Some really helpful info can be found on his site and on youtube if you want to check it out. The vegetable oils and pufas can really suppress thyroid function which is why I cut them out awhile ago

If I dont get my temps up on tru I will 100% look into getting some T3 as well

Helcaster profile image
Helcaster in reply tojconnor123

I take a huge dose 3 grains NDT and 75 mcg of T3. I tried cutting T3 further a couple of weeks ago and my temps dropped to 35.2 and I felt terrible. At the moment I have a lot of body pain, nausea, breathlessness so I know I'm low for some reason. I'm wondering if Tru thyroid is weaker than "good" Nature Throid? I've been trying to get on top of this for 11 years now. When I saw a good thyroid doctor he said I'd been hypothyroid for at least 20 years, I even had a very enlarged tongue, my eyelids were skinning, everything so dry, walking through porridge feeling, strong slow heart beats that seemed to shake my body, almost daily migraines, trigger fingers, deep hoarse voice etc etc. I don't expect to undo all the damage, but I would like some quality of life. Nature Thyroid was a god send and I really felt some normality for the first time in years.

I've split my T3 for 3 doses instead of two today, if that doesn't do the trick I'll split the Tru thyroid, thanks for that tip!

I've come across Ray Peat's work occasionally online, I'll look at what he says on vegetable oils, thanks. I don't eat processed food at all, drink mostly water, no juice nor alcohol, it's not much fun is it!

Let me know how you're doing on Tru Thyroid please, in a couple of months, I'll PM you.

jconnor123 profile image
jconnor123 in reply toHelcaster

Yeah definitely pm me when I've been on it some time and we'll see if I've improved on it

Funny you say that, because I've heard a lot of people saying the " new " WP & Nature Throid aren't working for them anymore. These are just unproven rumors of course saying the product has been reformulated .. But I don't have a lot to compare Tru Thyroid to. What I can say though , is that after been on it for a short while my blood results were much improved.

But waking temps are just as important to me, so fingers crossed they start climbing back to normal. Already have a little bit but not a lot.

Helcaster profile image
Helcaster in reply tojconnor123

RLC labs I contacted twice to see if my batch had potency issues, but they never replied. On their Facebook page it's full of angry patients who were stable before and now their labs are all over the place. I actually was offered a refund for the 200 3 grain I bought in March. If they fix what's wrong I'd go back on it though.

pennyannie profile image
pennyannie in reply tojconnor123

Hey there

There are other people on Tru Thyroid and reading the very long post on here regarding same, it does look as though some people need more of this particular NDT than they maybe did of another.

All that matters is building up slowly checking temperature and blood pressure, and treat to the relief of symptoms - not all NDT is the same, each the with different fillers etc, so what you were taking is a guideline, but not necessarily where you'll end up.

jconnor123 profile image
jconnor123 in reply topennyannie

Good advice thank you

Lora7again profile image
Lora7again

I don't think you are taking enough NDT yet because your TSH would be very low or even suppressed. Hopefully once you get to a optimal dose all your symptoms will disappear.

This is not a quick fix I'm afraid.

jconnor123 profile image
jconnor123 in reply toLora7again

That sounds right thanks Lora

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