Never felt so ill in my life struggling do anyt... - Thyroid UK

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Never felt so ill in my life struggling do anything

Mcgrath profile image
10 Replies

About a year ago my tongue were so sore I couldn't talk after a blood test doctor give me folic acid. Then last year beginning December I woke up crippled in pain in ambulance up a and e after 2 agonising episodes I had my gall bladder removed .A few months bk I had a well woman check the results showed my thyroid wernt functioning properly under active. I'm now taking levothyroxine I have been told after each blood test to up the dosage I'm now up to 50mg .Every bone in my body hurts and every muscle al my strength has gone to the point I physically carnt carry anything .Everything I do hurts even getting dressed and my head is constantly banging .any advice I would be so grateful .

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Mcgrath
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bowler profile image
bowler

I had the same problem with aches and pains, headache's, it even hurt to turn over in bed, cut a long story I had a blood test [ ESR ] which revealed high inflammatory's and I was diagnosed with Polymyalgia Rheumatica, and Giant cell arteritis I'm not saying that's what you have, I'm no Medic. but your symptoms are similar, I assume with your problems that you have had all the blood tests anyway to rule out anything else.

Hope you soon feel better

Mcgrath profile image
Mcgrath in reply to bowler

I can't turn over in bed I'm screaming out in pain when I even try to

I can't comment on polymalgia, but as this is the thyroid forum I strongly suggest you start by posting your most recent bloodwork results related to your Thyroid. Here's just one example of what it might look like for your reference only taken from another post found here:

healthunlocked.com/thyroidu....

Notice it has the critical readings such as TSH, free T3, etc with the ranges (in brackets). Fasting is recommended prior to bloodwork (water OK) and leave your Thyroid dose till after test for best results.

These results are important as they will shed light on what is really happening with your body. And by the sound of things you certainly are not likely to be optimal - and many MDs haven't a clue what is considered optimal! Ignore the term "normal" with your results as "optimal" levels are vital for thyroid patients.

I hope this is of some help to get you started on your journey to better health.

shaws profile image
shawsAdministrator

I am so sorry for you at present. We seem to be left high and dry because doctors do not know best how to treat us, except look at a blood test. I know exactly what you feel as I couldn't believe I could feel so much worse than before being diagnosed, which took a long enough time with different diagnosis and treatment for things I didn't have. I also had to call the ambulance quite a few times, from work or wherever. I am fine now so we have to read, learn and ask questions.

As your dose of levo increases, hopefully you will begin to feel so much better.

Request a new blood test from the GP, and it should be the very earliest, fasting (you can drink water) and allow a gap of approx 24 hours between your last dose of levo and the test and take afterwards. Always get a print-out of your results from the surgery and make sure the ranges are stated. Ranges differ in labs and it enables members to respond.

You should have a TSH, (thyroid stimulating hormone) which is from the pituitary gland which tries to flag up more thyroid hormones when thyroid is struggling. Your need T4, T3, Free T4, Free T3 and thyroid antiboies. B12, Vit D, iron, ferritin and folate. Everything has to be optimal and we are usually deficient.

Doctors seem to have been told that a TSH and T4 reveals all. That's not the case and the suffering goes on.

We have recommended labs that do pin-prick home tests and I'll give a link just in case your Frees aren't tested. Levothyroxine is T4. T4 is an inactive hormone and converts to T3 (Active hormone) and it is required in all of our receptor cells

in order for us to function normally. It does take time though with steady increases in levothyroxine. Levo should be taken first thing with one full glass of water and wait about an hour before eating as food interferes with the uptake.

Or you can take it at bedtime as long as stomach is empty. If you decide bedtime dosing, you miss this when having an a.m. test and take it after test and at night as usual.

Always get a print-out of the results with the ranges and post if you have a query.

Mcgrath profile image
Mcgrath

Thank you for your reply I am due to have a blood test I'm going to go in the morning to get it done .Normally after I have had it 2 or 3 days later I get a phone call from the doctors surgery from the nurse who says it's nurse from the surgery is that Tracey I say yes to that she says double your dose .Basically that s it until I ask again when I'm due a blood test.I shall deffinetly be asking for a print out and some sort of diagnosis or at least an explanation of what she thinks might or is wrong with me other than under active thyroid .Every day is a nightmare to me with more symptoms I am starting wonder if I'm dying it's so bad I can't even reach up in a cupboard without wanting to cry every thing is so hard .I have a 11 year old daughter and at the minute can't do anything with her has I'm physically exhausted I'm just about able to keep up with cooking her tea and washing her clothes .I keep thinking I'm missing out on doing normal things with her cause it's just to hard .

mcgrath, i read everyones answer but forgot what was written.....(brainfog) incase it was forgotten, you also need your antibodies tested so hashimotos can be taken out of diagnosis.

TPO antibodies and

TGB antibodies

all the best for your journey.. x

MariLiz profile image
MariLiz

Hello Mcgrath, did your doctor explain why he gave you folic acid when your tongue was sore? This sounds very much like a problem with your B12 levels. Has he done a blood test for B12, ferritin, folate and VitD? These all need to be at very good levels in order for our thyroid medication to be effective.

Do ask for these to be checked, and if he has tested them, post your results and ranges for more advice. The sore tongue, aches and pains, and exhaustion are indicative of a possible B12 issue.

I do feel for you.

I had a great deal of generalised joint pain and aches, couldn't even turn a door handle, and lying in bed was even painful.

At the time I was still slowly raising my thyroid meds, BUT I had low vit D, and I think sorting that out stopped the pains.

My thyroid meds are getting there now, so generally the tiredness has gone.

Stick in there, you will get better, it takes time

humanbean profile image
humanbean

My first thought was low vitamin D. Your doctor should test it for you, but if they won't you can have a finger-prick test done by post :

vitamindtest.org.uk/index.html

Lots of us have used the above link, they are legitimate and reliable.

Mcgrath profile image
Mcgrath

Thankyou very much for your replays Unfortunatly now 7 months on iv found it impossible even get my blood test results over the phone let alone any sort of print out

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