I was diagnosed with an under active thyroid over 12 years ago (I'm 32). Ever since then I've been taking anything between 50mg and 150mg levothyroxine. I've also been on various antidepressants for over 12 years. I always feel tired, ache all over but mainly my legs. Suffer with 'brain fog' very bad memory and lack of motivation in general. Since having my son 4 years ago some of the symptoms have lifted slightly.
I have just come to accept that this is me and I push myself through each day. After reading other sufferers comments I now feel like I've wasted time and I should've been pushing my GP for more help. I've no idea about these levels everyone is talking about I always go for my blood test and take the amount of thyroxine prescribed and ask no further questions as years ago when I asked why am I still so tired etc I'd get fobbed off. One GP said to me 'there's no such thing as ME or chronic fatigue as there is no test for it'. I always left the surgery feeling so frustrated and lost but I am going to start a new fight as I need to feel better before I waste any more of my life. Can anyone advise me where to start and what to say to my GP?
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Nell1982
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Firstly you need to know the results of your tests for the last couple of years. You are entitled to them. If they won't play ball think about finding a GP who is interested in helping you. Contact Louise warvill at thyroid uk to see if she can give you details of a decent doctor. You also need to have the levels of Vit D, B12, folate, ferritin and iron checked out as they are usually very low in hypothyroid patients, especially when you have suffered for so long. As well as TSH, T3 and T4 thyroid tests I would be asking for antibody tests (TPO and TgA) as the fact that your dosage has been so up and down suggests this might be a problem. It could be a rough ride for you gathering info and learning how to react to it (with supplements etc). Plenty of good advice on here though. Post your test results when you have them (include the ranges-figures in brackets) You need to get better for the sake of your little boy. Good luck
Hypothyroidism reduces the calcium in the body. Vitamin B12 needs calcium to be absorbed. The symptoms you describe seem similar to my aortic aneurysm symptoms which responded to B12 supplementation. I would suggest that you try B12 sub-lingually as it enters the blood stream directly bypassing any digestive tract mal-absorption.
Also, start treating yourself! Same as you, I was diagnosed about 12/13 years ago and I am a very active 49 year old. I soon learnt NOT to listen to most of the doctors I've come across and also learnt to NOT stick to numbers on a piece of paper and most certainly NOT be fobbed off. I increase my levo when I know I am not right, as in under active symptoms. But you do have to be careful and monitor your symptoms, as there is a tipping point, well there is for me anyway, where I know I am on too much and then I just take the dose back a bit. Thankfully I have an understanding doctor, who I can talk to, though I have in the past had to deal with some right a holes!
I'd agree with crimple, you need to get properly tested and to have a copy of your results. I would also urge you to get "Stop the Thyroid Madness" by Janie Bowthorpe, it is my bible and was written in response to the thousands of people who just do not feel any better on T4 alone - and why would T4 alone work when your body produces T1, T2, T3, T4 and calcitonin? They all have a part to play and you need to be on natural desiccated thyroid.
Welcome to our forum and it is time you took your health into your own hands. You will by now have come to realise doctors know little about how the thyroid gland works - its purpose - clinical symptoms. So we have to educate ourselves.
It sounds as if your GP adjusted your levothyroxine according to your TSH level, which is the worst thing to do as it can give us additional symptoms as well. This is a good link overall and there are other topics at the top of the page.
This is an excerpt from the date August 13, 2002:-
Dr. Lowe: No doctor can intelligently decide what a patient should do with her thyroid hormone dosage solely by the results of thyroid lab tests. We can make informed decisions about dosage only when we know the patient's clinical status and have the results of physical exam procedures. Most endocrinologists and other conventional doctors would likely disagree with me about this. But their belief that they can determine correct dosages solely by lab test results is a major reason that millions of hypothyroid patients chronically suffer from hypothyroid symptoms despite taking thyroid hormone. I wish you success in your treatment.
The doctor that mentioned ME and CFS was right - and he was wrong.
He was right that there is no test for them, it's just a doctors - often uniformed - opinion. And he's right that they aren't diseases. But he's wrong in concluding that therefore they don't exist.
They do exist - and cause much suffering - but they are just names given to a syndrome - i.e. a bunch of symptoms. And the trick is - and this is where education and intelligence come in, which he obviously hadn't got - to find out what they are symptoms of. Very often, they are symptoms of badly treated thyroid conditions. So, had he been a savvy doc, instead of fobbing you off, he would have said, hm, something not quite right here, let's test her thyroid levels and see if she needs an increase, or perhaps she's not converting and needs T3, etc etc etc. The fact that he didn't do that shows that he is not a good doctor with your best interests at heart.
M.E. and CFS could also be caused by other things because they are symptoms of a lot of deficiencies, both hormonal and vitamin and/or mineral. Most likely suspects, to my mind, are B12 and D, closely followed by magnesium. Very important to get these tested, plus iron/ferritin, zinc, iodine, other B vitamins, etc. As many as you can!
You have been very badly served by the doctors you've seen, and I'm so sorry to hear it. The only solution, as others have said, is to know your disease! Read as much as you can : Mary Shomon, Stopthethyroidmadness, Dr Lowe, for starters. You will end up knowing more than your doctors - because they don't know very much - and they won't be able to fob you off. I'm afraid, that at the time in your life when you feel the worst, you have to fight the hardest to combat this disease. But you can win! Lots of us have.
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