New here, mystery symptoms -- wondering if it's thyroid?

I've been battling some really debilitating symptoms for the past year. They started after a long-term battle with severe anxiety/stress. At first they resembled 'adrenal fatigue', i.e. I was getting low blood sugar attacks, thirsty all the time, tinnitus, nausea etc.

After a while, things got much worse. I had the symptoms of hypothyroidism like low temperatures, feeling cold, peeling skin, rapid weight gain etc.

A doctor checked my TSH and it was 3.3, but my FT3 and FT4 were completely ideal (can't remember the numbers but they were high in the range). My RT3 was high. I also had low Vit D, B12, normal Ferritin but low iron etc.

Over time, my symptoms have gotten so much worse and a lot are neurological. I always feel like I'm on a boat, I feel like I'm going to fall over when I walk, I have to hold onto the shower door to steady myself, I can't leave the house, my legs feel heavy and useless or like jelly sometimes.

I did have some thyroid antibodies but they were in range. I also had an ultrasound that was normal.

I found a doctor who said I probably have subclinical hypothyroidism. He started me on NDT and worked up slowly, but even the low doses crashed me severely (I felt too fatigued to get off the bed).

This is terrifying to me because no one really believes me, or they're saying it's anxiety, which is bollocks! I am 30 years old and can't walk around my own house anymore without holding onto the walls.

I am wondering if this is all in fact hypothyroidism. I had my TSH etc. checked 4 months ago, so am wondering if I should do the panel again. I am just so weak and can barely get up anymore, so even getting out to see doctors is impossible. I wish I could be admitted to hospital but my doctor just referred me on to a psychiatrist, who I will see next week.

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  • I forgot to add that the worst effects are on my mood: I am so hopelessly depressed, irritated and angry (I want to kill everyone I live with -- not literally! -- but you know what I mean), noises are horrible, I feel like I have dementia (no memory, no attention span) etc.

    Also, I have bottomless hunger and never feel 'full' -- I eat and eat and eat. It's a nightmare.

  • With the anger and irritability, and the feeling of being on a boat I would consider two things ASAP.

    1) Low B12 causing neurological symptoms. If you know you have low B12 already, what treatment have you been given or how are you treating yourself?

    2) Gluten ataxia. People always think of gluten as attacking the gut. It can attack the brain too, and the part of the brain that controls balance can be severely damaged. Bad temper, irrational anger, and irritability can also be symptoms. Be aware that being tested for coeliac disease is not wholly reliable. I got a negative result and yet giving up gluten gave me loads of benefits - particularly with my staggering problem and my uncontrollable temper.

    This recent thread is worth reading :

    I would also suggest you have a thyroid problem based on your TSH.

  • The problem is that my 'adrenal' symptoms have become so bad that *anything* will set me off and crash me/worsen my hypoglycemia. That includes supplements like Vit D and B12. Pretty much everything makes me worse.

    So it's a bit of a vicious trap where I can't fix anything that's wrong. My doctor wouldn't prescribe HC; I ordered some and tried it, but didn't like how I felt on it.

    Oh, and I am gluten-free.

  • Can you not even take sublingual B12? That by-passes the gut - if it's the gut that is the problem.

    How about B12 injections? You can buy the B12, and the syringes, and inject yourself. If you don't raise your B12 level, things are only going to get worse.

  • Oh, and the first step to getting well, is to get a print-out of your results every single time you have a blood test. It is your legal right to have one. You need to know exactly what was tested, and what the results were. Doctors know nothing about hormones or nutrition, so you really cannot just take their word for anything.

  • I haven't tried injections, but no, I can't even take the sublingual B12. My system is so sensitive that everything crashes me. I think I'm going to be stuck until I can get my adrenals sorted out.

    I do have copies of most of my tests.

    What is the philosophy here re: Hashimoto's and antibodies? I have some antibodies but they are in range -- though I read some doctors believe that any antibodies = Hashi's. I'm thinking of getting them retested. I have read that hypothyroidism/Hashi's is one of the first things that should be considered for Ataxia.

  • I don't know about Ataxia, but I believe that thyroid should be the first thing tested whenever anyone goes to the doctor for anything! It can cause so many problems. But doctors don't have a clue.

    Antibodies is a difficult one. There are two schools of thought : a) no-one should have any thyroid antibodies unless they have Hashi's/Graves b) everyone has some antibodies, but they're only a problem if they're over-range.

    The big question is : how did they set the range?

    Now, it's true that some people have Hashi's without having raised antibodies, and it's picked up on a scan because of the shape, size and texture of the gland. But, I very much doubt that they gave every single one of their blood donors a thyroid scan before they set the range. But, is it possible that everyone used to set the range, and had antibodies, had Hashi's?

    I have a feeling, we will never know. I very much doubt if there will ever be much research done into the question because there's no profit in it. Big Pharma have not yet come up with a drug to reduce antibodies. When and if they do, you can be sure that EVERYONE will be diagnosed with Hashi's and prescribed said drug!

    So, for now, all we can do is abide by the range, and get a scan if we're luck!

    Did you have anything else tested besides your TSH? FT4, FT3? Vit D, vit B12, folate, ferritin? These are all important things to know.

  • Thanks. My FT3 and FT4 were normal (i.e. FT3 in the upper 1/4, and FT4 over 1/2 way in the range). Vit D and B12 were low -- but I can't supplement them as I've said. My folate was normal. Ferritin was normal, but other iron values were low.

    I will see if my doctor can retest my thyroid + antibodies. I wonder if my antibodies are not as high because I've been gluten-free for so long (about 7 years).

  • Sorry, but 'normal' is meaningless, because we're all different. When a doctor says 'normal', he just means 'in range'. But, 'in range' is not the same as 'optimal'. It's where in the range it falls that counts.

  • That's true, but people on STTM groups also said my FT3 and FT4 were perfectly normal. My FT3 was 5.5 (3.3-6.4) and FT4 was 17.9 (11.0-22.0).

  • Well, yes, they're 'in range'. But optimal is when all your symptoms have gone. Have all your symptoms gone? If not, they're not optimal.

  • Human bean has already replied with what I was going to suggest - gluten issue. Especially gluten ataxia.

    I have finally found recently, by going gluten free, that I have serious gluten issue. (Had negative coeliacs test 20 years ago). Improving now gluten free and on magnesium supplements. (Still can't tolerate vitamin d supplements, though I need to improve low vitamin D. Sunshine only at moment)

    I suspect my grown-up children have gluten issue too - one has just had full blood test results similar to yours. High (actually out of range) TSH, totally fine T4 & T3, no antibodies, but low B12, vitamin D, folate and ferritin. Just waiting coeliacs tests and possible endoscopy before going gluten free. I suspect/hope the high TSH will resolve once gluten free as the vitamins should improve with better nutrient absorption in the gut (and supplementation if necessary ).

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