Fed up feeling ill all the time

just thought i would air my frustration , im currently on 112mg thyroxine, have never felt well since taking the bl...dy stuff, anxiety panics lightheadedness fatigue etc etc etc how on earth are we supposed to get well if the gps wont help, my TSH level is 0.1 at present they say they cannot increase my meds, i cannot afford to go private again as i dont work, have asked three times now to be referred with no joy, i know i have low adrenals in the morning and noon but they dont seem to bother, why wont they listen to us and give us the meds we need sorry my little rant is over x

5 Replies

oldestnewest
  • Poppyrose, one very important thing to know is that TSH is meaningless and doctors should not be using it to dose by (but they don't know that). TSH (Thyroid Stimulating Hormone) is not even a thyroid hormone, it is a pituitary hormone that stimulates the thyroid to make more hormone. But once the gland is sick, and even more when you are on thyroid hormone replacement, the link between the pituitary and the thyroid is broken, so TSH no-longer reflects thyroid status - if it ever did.

    0.1 is not that low. Mine is 0.01. A lot of us need a suppressed TSH to feel well. The fact that Kimbo's TSH is 0.1 in no way means that she is heading towards hyper. It means nothing at all. To know if she was over-treated you would have to look at her frees - especially her FT3 - but even that would only be a rough guide. We are all different and lab ranges don't always apply to us. We need the amount of thyroid hormone it takes us to feel well, no matter how much that might be.

    And it is very unlikely that any doctor would let you have enough hormone to go hyper! They won't even let you have enough to feel well, as a general rule. Your little 75 mcg is a tiny, tiny dose. Do you know that before they introduced the dreaded TSH, a normal dose of hormone would be in the region of 200 to 300 mcg?

    This is what doctors do not understand : 'in range' is not the same as optimal, and 'normal' is a setting on a washing machine. lol Now write that out one hundred times and stop worrying!

    Hugs, Grey

  • Hi Greygoose hope you're well!

    Thought it best to delete my pathetic go at a suggestion so as not to confuse others. No offense. ;) LOL!!! but what you say is interesting to all.

    I understand the TSH thing being meaningless in the whole scheme of things. If 75mcg is so low why would my GP be frightened/reluctant then of raising it or even a trail?? instead of so many like me suffering? The Clinician nurse said herself an extra 25 mcg prob won't make much difference anyway when we were talking side effects/overdosing etc... my Gp still adamant it's just a placebo.

    Confused about the TSH of 0.1 though, sure I've read (maybe mis-read) that that is very low and heading towards Hyper - or do you just monitor it carefully, as expected, as long as you are well on it?

    In range, optimal and normal = language they don't use correctly I know. Optimal - barely heard of. ;)

    PR xx

  • Kimbo, why won't they? Because they've been taught that hypo is 'easy to diagnose, easy to treat', all you need is a TSH test and a couple of little white, synthetic, pills. And they haven't got the wherewithall - or the interest - to question that teaching. (At this point I would normally go into a rant about Big Pharma, but I'm too tired today, let's just say it's all their fault because they are greedy, money-grabbing scumbags who are making a fortune out of us!)

    Have you had your frees tested? Or your iron, or B12, vit D? I would think that would be the best place to start, nagging to get these tested. In the meantime, educate yourself about your disease so that you end up knowing more than your doctor (not difficult), then go back and blast them out of the water! Don't stand for their nonsense. Once you know what you need, demand you get it. Don't forget that these doctors who order you around and keep you sick are actually working for you! You pay their wages. If you had a maid, would you stand for her saying no, I'm not making the tea today, you had tea yesterday, you can't have anymore? I think not. No different with a doctor (in my humble opinion).

    I don't know if this has been of any help, but it's what I think.

    Take care, Grey

  • A GP really knows very little about the treatment of thyroid gland problems.

    What of the people who have had thyroidectomies, they HAVE to have a suppressed TSH and it doesn't put their life in danger as long as they have the proper doses. If you want a copy of the article below, email louise.warvill@thyroiduk.org and post a copy to him with the appropriate question circled before your next appointment, so he has time to digest it.

    Dr Toft on the question of how much levo patients should have replied:-

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

  • Not sure if this helps but I was on 50mcg Levo to start with then doc increased level to 75mcg and immediately I felt high blood pressure accompanied by nose bleeds-clearly something was wrong. The 25mcg did have a dramatic effect on me. When dose lowered I felt ok again. Gradually i alternated the dose 50/75 alternate days. I felt fine for 6 months or so then started with panic attacks/hypoglycemia/light headed etc.. Lowered to 50mcg-my suggestion to Doc. and felt ok again. Currently on this dose and although still get tired/flat/palps/hot flushes I'd rather that than the hyper feelings. Some good days, some not so good-but need to check B12 and Vit D-my ferritin was low also-not buying any more supplements till I know I need them.

    Will update on that soon. Also read that weather/temperature makes a difference?

You may also like...