I have been struggling with an overwhelming type of fatigue that I can only describe as almost like taking super strength sleeping tablets, all day and everyday.
I'm barely able to get out of bed anymore from the intensity of the fatigue, and can sleep up to 16 hours and still struggle to even open my eyes.
I just wanted to know if anyone else has ever experienced this kind of debilitating and extreme fatigue whilst still presenting normal thyroid results?
Background- My last thyroid and blood test results were all normal, although I do have hashimoto's, as well as multinodular goitre and very inflamed thyroid. I've recently removed gluten from my diet, and have started taking Vitamin D, Alpha Lipoic Acid, and Iron to help with my overall health and neuropathies.
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DaisyBelle85
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I am fortunate one to get my thyroid normalised by iodine but despite ideal thyroid values I had that type of fatigue. Didn't sleep that much felt like wearing lead armour. Iron, vit D, B12 all helped a bit but just a bit. I was put on b1+B6+B12 injections and that worked for me. I'd try B1 on high dose, its safe and fast effect. If it works it works in two days or even faster. Some take up to 1500 mg to get relief. Like I said B1 is safe to try that big dosages. If it doesn't work then it doesn't and that's it but at least you tried it. Izabella Wentz for example has written about it and tried it as thyroid meds only wasn't working well enough.
Would B1 not cause my B12 to be elevated? I'm concerned because I already have some neuropathies, and having above average levels of B vitamins can cause neuropathies- something I can't risk.
B6 on large dosages can paradoxally cause neuropathy even though low B6 causes neuropathy and B6 can be used to treat neuropathy. With B6 that must be done under doctors supervision and get tested.
B1 is safe as is B12, neither one cause neuropathy, but lack of either one can cause neuropathy. For me this cocktail helps with numbness and tingling but for me it's all 3.
B1 I recommend for fatigue and brain fog, it seems to work for so many and is used for fatigue/cfs/pem/fibromyalgia and it boosts thyroid and can lower thyroid antibodies.
My Neurobion injection has 33 mg of B1 so it's not comparable to oral supplement. I get two injections a week.
But orally some take upto 1500 mg before they feel the benefits of B1. We are all individuals, some feel benefits on lower dose, there is no way to know except trial and error. If it works it works fast. It's important to be taken 3 to 4 times a day to get the benefit as B1 is vulnerable to any gut issues.
Best to take it with food that is rich of carbs. B1 can irritate gut and cause jittery feeling if taken empty stomach. I hope it works for you, to me it's life changing. You might not even need to go ridiculously high, been reading a lot about B1 and most seem to find the sweet spot around 300-500 and then after a while can reduce it to 50-100 mg taken every day or just twice a week.
I had no idea B1 is so important for wellbeing. With B2 it helps to lower estrogen or more so to clear excess estrogen and estrogen imbalance is common with hypos.
Who said your labs were 'normal'? Your doctor? When a doctor says 'normal', all he means is 'in-range'. But, 'in-range' labs don't sound normal for you. Do you have the numbers - results and ranges? If so, post them here and let's have a look.
My rbc count and overall count was normal, but I've started taking iron supplements just to help increase the ferritin levels as they were on the lower side
There's really not much iron in spatone, I'm afraid. And low ferritin like that, would make you tired.
Your labs do look more or less ok, there. But, that last one was six months ago. A lot can happen in six months, with Hashi's. Perhaps time to get new labs?
I was waiting until my endo appointment in 2 weeks, but it's just been moved back until August, so I think I'll have to get them done privately. I just hope that I'm not stuck with the same normal results 😔
In reply, yup! I was told that my tsh was ‘in range’ when I could hardly stand up. I would get up, have breakfast, and then have to lie down as I was so tired. I would then sleep for about 8 hours, struggling to wake up. I’d be awake for a couple of hours and then have to sleep again. On work days I had to stay awake all day but collapsed when I got home. (I worked part-time.). I now realise that the ‘in range’ bit is a load of b******s. I do not ever wish to have a return of this fatigue and brain fog; unbearable.
Hi DaisyBelle85, my story is the same as many who post on this site, and many who do not. The nhs failed to diagnose my hypothyroidism, probably for about 30 years of increasing symptoms. The latter 10 years were characterised by extreme fatigue, weight gain, brain fog and muscle pain. (I think that my GPs were fooled by my managing to hold down a job, sound coherent and not looking overweight (I am tall).). My tsh was usually the only thing tested, although I do have a printout of two tests for T3 which have a result of 0.03 and 0.01 (no ranges). This should have rung alarm bells with my GPs but did not. Eventually a friend recommended a private doctor locally after listening to a radio programme which mentioned hypothyroidism. He chatted to me and then told me that it was obvious that I was hypothyroid and said that the nhs used the tsh test only and that this was completely wrong as a diagnostic tool, which he had told them on many occasions. He arranged a urine test and then prescribed NDT, which he supplied. After the first week on NDT I could stay awake during the day and in the first month I lost a stone in weight. My ‘bad’ period was when NDT was not available and my GP gave me T4; I was very ill. Even then my GP made no comment. I then consulted Dr. Peatfield, bless the man, as my private doctor had retired and he told me to introduce T3 gradually as I decreased my NDT (now available again). It was when I was on T3 only that I felt best and that is what I take now. For a while the GP gave me a prescription for T3 but I had a letter a couple of years ago telling me that I was not hypothyroid and they were stopping my T3 forwith. I didn’t even bother to respond and went and bought my T3 myself. It costs me about £1,000 per year. Mercifully I can afford this. One day I might blast the GP but it won’t make any difference as I’ve had these types of conversations before. There...that’s it in a nutshell. A long slog. The decades of hypothyroidism have taken their toll but I keep going.
Happy to hear that you finally got the medications you were needing, even if it was so far down the line.
I'm feeling as though I'm completely giving up, I have an extrodinarly long list of hypo symptoms, in conjunction with my multinodular goitre, and yet because my levels are considered to be "normal" I'm left to struggle every day.
I can only hope that my thyroid gives in soon so that I can finally be medicated.
Have you thought about consulting a doctor privately? TUK has a list of doctors they can supply. There’s no need to suffer under the nhs; I was saved by a private doctor.
Unfortunately, this was a private Dr. I've seen a neurologist for the symptoms that I've developed such as tingling and neuropathy, and after months of tests and scans he referred me to a rheumatologist, who then after months of saying I just needed rest, decided i had should just take a 6 month course of steroids.
I had to ask to be referred to an endo to investigate the obvious issue of my multinodular and inflamed goitre, as well as my raised Thyroid antibodies. I'm still waiting on my appointment, but it's becoming a real struggle to even function now. The depression that's kicked in with all this, as well as the fear of the unknown is just putting me in a very dark place.
My insurance doesn't cover any thyroid related issues, so unfortunately the upcoming endo appointment is via NHS, as atm I just can't afford to self fund private treatment.
I had all your symptoms for two decades, and have recently discovered all the B vitamins. There are 8 in total and most are implicated in neurological symptoms. I had started to take high dose individual B's but then read that doing that can imbalance the others. So now I buy Very high dose multi B vitamins off the internet. It's made a big difference. However, there are many other things I've had to do to get my health this far forward from the stage when I was sleeping for 18 hours a day and waking like a zombie.
Take a look at the AIP diet (auto immune protocol); it's fairly drastic but it made a massive difference to me. As our great grannies said : We are what we eat. It could well be certain food(s) which are causing you to be exhausted. In my own case it was all grains.
Also I would recommend you take a look at the website of Izabella Wentz. I must have read hundreds of articles & books of Hashimoto's but she gives the best & clearest advice and help. Be sure to click on all her headings and links - she wants everyone to recover & sends out free e-articles.
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