Hypothyroidism & fatigue.

[Hollie089]

Diagnosed with hashimotos about 2 years ago, had mild fatigue which was well managed after a few weeks on levothyroxine. Fast forwards to today and I am absolutely exhausted, due to this I have no interest in anything, I'm usually up and about all the time on days but not now, by lunch at work I'm aching all over and ready for bed, obviously it's getting me down!

I've had a full set of bloods (had some bad stomach pains thought to be gall stones, all clear on an ultrasound however) and all are normal other than tsh of 7.6

Is it reasonable to be this tired with what is still considered subclinical hypothyroidism?! Does anyone else feel like this with a TSH similar?

Are you still on levo? You said for a few weeks? Sounds lie you should still be on it. Hypothyroidism does not go unless it is post partum. That sometimes resolves

I'm no expert but 7.6 is higher than most people feel ok on I think, do you know what your TSH was when you felt ok ? (Mine is usually around 1 for me to feel 'normal' )
How about other things like iron levels and other vitamin levels ? were they checked ?

Your TSH is pretty high, are you still taking thyroxine?
Have you had your antibodies checked?
The NHS isnt great for thyroid issues so you may have to push to get better care. Loads of good info on Healthunlocked site.

My gallbladder was filled with gallstones. When I had my first ultrasound they said it just had a little 'sludge' in it 🙄 I had hundreds of stones when they removed it three months later and it was perforated.

You need to get your iron checked, your bvits checked and your vitamin D checked. Any of these out of whack can absolutely render someone with hashi's absolutely useless at functioning. (fellow Hashi here!)

Tsh should be ideally 2.5 by the way. 7.5 will also explain why you feel god awful. Ask them to increase your dosage.

I feel the same OP. It seems to have started when the colder weather set in. I can’t decide whether mine is physical fatigue or mental. All I can describe it as is a sleepiness starting around lunchtime.
I have problems with being cold all the time and my feet are like blocks of ice even wearing thermal socks.
I’m on Levothyroxine and have recently had my levels checked as well as blood and sugar count. All apparently normal. Baffling.

I have had under active thyroid for 25 years after birth of last child. My last blood test showed my TSH is 7. The test before this it was 5.2. My T3 is apparently just within normal boundary and so GP won't change it. I am on 125mg of Thyroxine. I am exhaused all of the time. Fall asleep and have put on roughly 1lb each week my TSH is so high. I don't know why but many GP's want to keep people on slightly lower doses than they need. For many years my TSH was 3 and I felt so much better. Menopause is making it go so high. All you can do is ask to be referred to endocrinologist or change GP if they won't prescribe more thyroxine. BTW there is a different thyroxine product that is supposed to be better but my GP won't let me have it. You could ask if yours will. I am due a new blood test in another month so will be demanding higher dose if TSH above 5.2 again.

7.5 is way too high for your tsh, but you also need to look at t3 and t4 to see if you are converting properly. You can put any amount of levo in but if you aren't absorbing or converting it wont help. Normal in blood results is useless too, the ranges are taken from samples received in a labs specific area so differ across the country. What is normal for you is not normal for the next person so doctors are meant to treat symptoms not test results.

@thistimetomorrow have you seen your own results to check where they are? Also worth knowing that we need more thyroid hormones in the winter than the summer.

@keo8260 no I’ve never asked for specific results. Sorry for derailing the OPs post but maybe this will be of help to other readers.
I think I would never have been diagnosed until I went to my GP about failing to become pregnant. Because of my thyroid results I was referred to an endocrinologist, given medication and pregnant with months.
I ring my GPs surgery to ask for my results and am told it’s within the perimeters but my DH has also said I should see into it.

@thistimetomorrow

They do not like to give them to you but you are entitled to a print out of the results. I have always requested from the reception, keep pushing if they try to refuse. Some places also do online access to test results so check if yours does that. My hypothyroidism went undetected as a doctor wrongly marked results as fine when i was very ill during a pregnancy, i lost that one and others and nearly my life. As a result my husband had a vasectomy too, then we found the mistake but its too late now. Health unlocked has a thyroid forum that is very knowledgeable and helpful. I have also done my own tests with medichecks which might be worth looking at as doctors only ever want to do the tsh which is not actually that helpful.

Thanks for the replies, yes have been on levo since diagnosis (75mcg for the last year or so) at the time my antibodies were very high (can't remember exact number) so definitely hashimotos. I know in the oast I have felt well with TSH between 2/3.

@cryingoverspilttea that's interesting, I was so sure it was gall bladder pain, completely typical of it and excruciating, I was surprised when the ultrasound showed nothing!

TSH is too high. It isn't a thyroid hormone, but it shows something isn't quite right.

I wonder if you aren't converting T4 to T3 (the active hormone that your body needs for basically every activity, so really affects energy), as you're on meds but still exhausted.

@keo8260 I’m sorry to hear of your losses. I think I had a few before having DS but because my periods were so irregular - 6/7 weeks I didn’t catch on. After I had DS I also lost my baby at 12 weeks and another at 6 weeks. By then I was 43 and DH said no more. It is only recently I have learned the connection between the two.
Hopefully by sharing our experience it will help someone else.

Not sure of all practices do this but if you have the NHS App with access to your GP practice you may be able to view your results that way. I use mine to order my repeat Rx's as it's easier. ( I can't book an appointment though )
This is the info about it
www.nhs.uk/using-the-nhs/nhs-services/the-nhs-app/

Push. Push. Push. Demand to be sent to an endocrinologist!! DEMAND! Do not let them fob you off! I manage my own thyroid now, I ask for blood tests when I think I need them. I know what level I need to be at for my thyroid to be working. I am in complete control along side my endocrinologist.

Join the British thyroid foundation. Read as many journals as you can about how your thyroid works!

Ask for your bloods, as for TSH, T4 and T3 to be done, not just your TSH!

@caringcarer please up your dose! Ask for a second opinion! I've lost 4 stone by taking control of my thyroxine! Do not let them tell you otherwise! Xxx

My first TFT showed a TSH of 7 and my GP started me on levothyroxine then as I was symptomatic. I would feel terrible if my TSH were that high again.

Has your GP increased your dosage?

Hi op,

You have autoimmune hypothyroidism.

The thyroid gland can gradually be completely destroyed; it's two years since diagnosis so it's likely that you

If you are on thyroxine you have a diagnosis of hypothyroidism and a tsh if 7.5 is out of range - I'm very surprised that's not flagged up on your blood test.

Definitely sign up for access to your records as it's very helpful to keep an eye on how you feel and what your tests were.

Most people on thyroxine, esp if a full dose, feel best around tsh 1 or just below.

I expect you will end up on 125 to be honest but you should go up by 25 definitely and get a retest in a couple of months.

You can also adjust doses by smaller amounts eg 25 every other day or there's actually a 12.5 pill by TEVA.

I'd also ask if ferritin, vit d and b12, folate have been tested. All have similar symptoms and most people feel better if these are also in upper ranges. In my experience ferritin is particularly noticeable if low, I do notice a huge difference if it's over 70.

DH has hashimotos and his levothyroxine dose has gradually been increased over the years. I think this autoimmune disease impairs the thyroid progressively.

Incidentally, is a reason why they err on the side of underdosing - a bit too much can kick off heart arythmias. He has atrial fibrillation and has his dose very finely balanced - something like 100 micrograms per day plus a 25 (the smallest pill available) every other day. My DM had a heart problem and always had to stick to a lower dose of levo than she'd have otherwise felt 100% on.

After about six months of levothyroxine and feeling not a lot better upped my own dose and ran with it for about six month before confessing to GP after a review blood test when my result were pronounced perfect (150 dose,) and I had upped to 200..not much he could say in the face of that

My tsh is basically 0 these days, but I feel normal and if I miss a dose I start to wind down like a broken clock

I only go for bloodtests when they insist and then we have a small stand off about dropping my dose,, which I always win. I have no symptoms of being over medicated other than the zero tsh.

oh...yes to Hashimotos, and over 25 years taking pills!

TSH of 7.5 is way too high. You need to increase your levo dose. Go back to your GP asap.
If you are taking levo then ideally it should be between 0 and 2.5.

As others have said go on health unlocked for some sound advice. Also worth getting ferritin, vit d, vit b12 checked. You need these to be in the optimum range. A daily multivitamin will not cut it.

This thread is very interesting. I too have lost pregnancy quite late. Once at thirteen weeks and last one at seventeen weeks. I did not realize there was a link.

My tsh is basically 0 these days, but I feel normal and if I miss a dose I start to wind down like a broken clock

I have my first endocrinologist appt next week; my gp is going crazy as my TSH was 0.01 (when on 75 levo) but I felt so well. She made me drop to 50 and I’m tired, cold and achy again

I keep my TSH under 1 to feel well and like others have mentioned I have taken control of blood tests via medichecks to monitor it myself. I would feel horrific at 7.5. I have also felt a lot better since moving over to NDT instead of Levo which I source myself - it’s worth researching this as an option. There is info on Healthunlocked and various Facebook forums - the main difference is you get both T4 and the active T3 hormone so it helps if you have conversion problems. Look at your Vit B12, Vit D, ferritin and Magnesium levels - if I start to feel super run down and exhausted I will have a Vit B shot which really seems to help. Magnesium can really help with sleep quality too.

Hi all , I've just been diagnosed with autoimmune thyroid disease by a private endocrinologist after having a lot of symptoms but my gp has always brushed me off ..
Apparently the one I have seen is amazing and the nurses rave about his ability to make you feel better .. I am 3 stone over weight despite being vegan and being very careful what i eat ( around 1200 cals a day ) and I am always moving and I suffer from joint pain. He had put me on 50mg , and although I feel less tired and cold I haven't lost a pound .. have any of you lost weight in any way since being diagnosed , it's the thing that gets me down the most . 😔

Have you had b12 and ferritin looked at?