3 Months of Levothyroxine...Feeling Worse?

Hi everyone, I'm new to being hypothyroid! I was diagnosed at the end of May this year with an underactive thyroid and put on a dose of 50mcg of levothyroxine. I felt much worse but reading on here, saw that this was generally common. I also had anti-thyroid antibodies which confirmed the diagnosis. I've kept going with it and had my bloods done again 6 weeks later and was put onto 75mcg. Still felt worse! I'm due my next blood test next week but the doctor said that my bloods were "nearly there" last time, so I should start to feel better, and will most likely be on the long-term dose of 100mcg - 125mcg.

As I write this, I have bruised eyes, I can't sleep, I'm either boiling hot and nauseous or freezing cold with chills (like I can't control my body temperature), I cannot get any restful sleep and I'm suffering from insomnia. I'm so exhausted that a walk from the kitchen to the living room leaves me breathless and struggling to breathe, I feel starved of oxygen. I have constant diarrhea changing to constipation and I bleed when I go to the loo. I slur my speech, get words confused and struggle to remember things. I have horrendous stomach pains and cramps and really intense pain in my hips and lower back. I'm only 23! I'm also having one period every 3 months that lasts for 3 days, compared to when they used to be really heavy and come every 3 weeks, but I don't know if that's relevant. I've also been intensely itching all over my body like an allergic reaction, though I'm not allergic to anything and my partner isn't itching at all either. I'm on 180mg of strong antihistamines to control the itching. I don't lose weight at all, even on the days I have no appetite and barely eat a thing. I'm slightly overweight on my BMI, all gained in the last year.

I've cut out wheat, gluten, dairy, I force myself to do light exercise every day, I eat small portions and drink 3 litres of water a day, and I take nutritionally complete multivitamins - everything the doctors tell you to do to feel better.

I've also been tested for anemia, Crohns, diabetes, lupus, ceoliac disease, you name it - all clear. I was at the doctor's yesterday and he told me he was at a loss and essentially implied I was a hypochondriac and I should just "get on with life". How can I get on with life when I can hardly get out of bed in the morning because I'm so exhausted and in so much pain?! I could honestly bang my head against the wall if I had the strength!

I've done a bit of research on my symptoms and ME/CFS is coming out as a possibility, but I don't know if anyone has similar experiences...should I go and have a discussion with my doctor about the possibility of ME as well as Hashimoto's, or should I just wait for the inevitable 100mcg dose and hope for the best? Does anyone here suffer with hypothyroidism and ME?

My life is an absolute misery at the moment and I'm close to losing my job because of how drastically I've faltered over the last few months, to the point Occupational Health are involved and requesting reports from my doctor.

Does anyone have similar experiences? Does anyone know if it's worth mentioning ME/CFS, as it seems to reflect my symptoms...I'm just desperate to get my life back...

Thank you everyone. Sorry if it's a rant!

Charlotte

6 Replies

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  • This should not be happening, Charlotte. Even when I started and in certain ways felt worse, I knew I was getting better. Your symptoms appear to be due to overdose to me. I am not a doctor but if I were a patient and my doctor told me to get over it, I would insist on a change of treatment. I'm beginning to think that everyone should start on T3 only as it is easier to assimilate, much easier than synthetic T4 which needs all systems to be "go". (I'm not in the medical profession) But at the very least, a trial on Armour or other NDT should be at least tried to see if it makes a difference because for some people it DOES make a difference and it does contain a small amount of T3. One other cause of your reaction may be that adrenals are attempting to stop the treatment because your reserves are too low. If they did check your cortisol, it may be hampering your treatment.

    health.howstuffworks.com/hu...

    We've had many symptomatic posters while on treatment but yours tops all. Can you let us see what your results were that prompted the treatment? And attempting to work as well makes you a wonder woman in my estimation.

  • This helps identify adrenal issues.

    stopthethyroidmadness.com/a...

  • Charlottejeannine, welcome - and sorry you're feeling so rough.

    Do you have any blood test results to share? If you don't, next time you visit your GP, ask if you can have them, plus the reference ranges - tell him/her you want them for your own personal records (you're perfectly entitled to have them) then post them here for comment. Sounds like there will be a lot, so concentrate on getting:

    TSH

    FT4

    FT3 (if it's been done)

    Thyroid antibodies

    Vitamin B12 (if you haven't been tested for B12 deficiency, ask if it can be tested)

    Ferritin

    Vitamin D (again, if it hasn't been done, ask if it can be tested).

    Some people just don't do well on Levo. It actually sounds like you may be allergic to something in the brand you're taking, but don't focus on that bit just yet - with getting doctors on side, it sometimes helps not to ask too much at once... See if you can get those results first!

    Do you know why you're hypothyroid - has a reason been given? You're quite young to have it. Is it likely you've had it some time? Can you pinpoint when you first started feeling rough?

    If I were you, I wouldn't go down the chronic fatigue/fibromyalgia route yet. Many here believe that those conditions are actually undertreated or non-diagnosed hypothyroid issues and/or B12 deficiency (though that's contentious, of course :) ). If you get a diagnosis of chronic fatigue or fibromyalgia, doctors tend to stop looking for other explanations and simply start throwing painkillers and antidepressants at you.

    There are very many knowledgeable people here who will do their very best to help you get well again - keep reading and have a good look around the ThyroidUK main site (the owner of this forum). Both my other half and I have largely recovered our health since finding this forum. :)

  • Please don't mention chronic fatigue/fibromyalgia. With a diagnosis of these conditions no further examinations will be considered. Have you been seen by an endocrinologist. Before asking to see one check with thyroid uk for an upto date endo list, and see if there is one near you. You will then be in a position to request an endo of your own choice. Please try and keep calm, rest as much as you need and do not feel guilty. I recently saw a n endo from the thyroid uk list. It was a very helpful and the endo was very reassuring that I did have a physical problem that was affecting my thyroid. He came up with a couple of conditions that he knew of, which are pretty rare, and I am now having tests. If they prove negative, he has agreed to see me again, hopefully to be able to refer me onto another consultant. It was such a relief that there are reasons why I feel so ill. I hope you find answers soon, and will soon see improvements and feel,a lot better.

  • Have you had B12 tested Charlotte? Many researchers believe leaky gut and intestinal disease is the ground zero of autoimmune disease and thyroid/PA/B12 def. is often linked both ways with symptoms overlapping,

    Severe fatigue, breathless, insomnia, diarrhoea, etc. are symptoms which seem to indicate severe B12 deficiency. Your GP should be guided by these neurological symptoms to treat with B12 injections without delay according to the BNF and UKNEQAS guidelines below until no further improvement, as there is a short window of opportunity before they become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as soon as possible:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    ukneqas-haematinics.org.uk/... :

    b12deficiency.info/b12-writ... (List of symptoms and an excellent film)

    cmim.org/pdf2014/funcion.ph... :

    The above latest UK research document is supported by many research papers and has a useful summary if GP won't read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    Martyn Hooper of the PAS recently had this to say in the House of Lords:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA. We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands..."

    My sister was misdiagnosed with ME for years and then dementia - it turned out to be severe B12 deficiency all along? We both have Hashimoto's.

  • Sounds to me like you simply cannot utilise the levothyroxine t4 and convert it into the t3 every cell in your body needs to function

    has

    ferritin

    folate

    b12

    vitd3

    been tested becsuse they must all be halfway in their ranges

    you might have the DIO2 gene and must only have t3

    Whatever you do dont even think about being labelled with ME/CFS or fibromyalgia

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