Feel like giving up!

Hi everyone

Last month my doctor was really sweet and said he felt by just looking at me and by my symptoms I was definitely hypo. My levels of TSH were 4.9 (.25 - 5.0) and he felt I would benefit from a therapeutic dose of levothyroxine. He put me on 25mcgm and last Friday I had bloods redone and I fasted for them. He said it wasn't necessary to redo T4 and t3 so I only had TSH done. (I cant remember what my levels were, I know they weren't good). Well it's come back at 1.83! The receptionist at the surgery said he has put on my notes no further action. So now I'm really confused. I told him how I felt physically. I am blowing up like a ballon with water retention, my basal temp is averaging at 35.1 (doc doesn't think this is relavent) I'm sleeping in the afternoon, I can't concentrate, the head fog has eased a bit and my anxiety is really bad at the moment. I have weaned my self of Prozac as I felt it was making me numb. Now I can barely walk as my feet are so painful. I don't know how much more of this I can take to be honest. I've gained 6 stone in 5 years and I'm so lethargic. I feel like I'm gonna get fobbed off again and to top it all off I've started smoking again after stopping for 8 months. I've just ordered tests from blue horizon. (Thyroid plus 10) I feel so fat and I'm now feeling like I should give up and accept in just fat and lazy even though I'm not. Does anyone have any advice please?

13 Replies

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  • I am not medically qualified but is your doctor going to keep you on 25mcg of levothyroxine or stopping prescription?

    Unfortunately there are doctors -1- and 'doctors' -2-.

    No.1 cares for and listens too their patients and -2 - those who somehow have picked a profession which is supposed to be caring and humane but come across to their patients as the complete opposite. This appears particularly to the guidelines laid down by their Superiors(?) for the treatment of thyroid gland dysfunctions.

    The following is from a No.1 doctor who died unexpectedly - not an Endocrinologist but a Virologist who was picking up the waifs/strays who, like yourself, were left out on a limb:-

    I write as a medical practitioner who has focused on the problems of hypothyroidism for some fifteen years. I was interested to read your small paragraph on a patient who had been essentially undiagnosed for five to six years. I write to indicate that this is the least of it and in my experience this is one of the most serious shortfalls in modern medical practice.

    I have come across literally thousands of patients who remain undiagnosed or do not receive an adequate level of thyroid replacement based on thyroid chemistry which has never been validated and is predicated on a ‘range’ of values (known as a 95% reference interval) notwithstanding the patient’s earnest solicitations that they do not feel well as would appear to be the case in the patient in your little piece.

    The matter has compounded by a recent extraordinary pronouncement by the Royal College of Physician and Family Practitioners who not only endorsed this erroneous view but further suggested that a certain thyroid reading - namely a TSH reading above 10 - is required to be at a given level which is statistically wayward to say the least and not even commensurate with clinical practice.

    Responsible and sensible deputations to Government, Royal Colleges and the General Medical Council have to date fallen on stony water. We have one last resort namely to establish a World Thyroid Register and if this Register contains a reasonable number of people we may be able to change medical opinion or even - dare I suggest - engage in debate with Endocrinologists and Royal Colleges which to date not has been possible and indeed my futile attempt to join the Royal Society of Endocrinology resulted in my being thrown out prior to attending a single meeting; so much for academic interaction.

    We have one last resort namely to establish a World Thyroid Register and if this Register contains a reasonable number of people we may be able to change medical opinion or even - dare I suggest - engage in debate with Endocrinologists and Royal Colleges which to date not has been possible and indeed my futile attempt to join the Royal Society of Endocrinology resulted in my being thrown out prior to attending a single meeting; so much for academic interaction.

    worldthyroidregister.com/Le...

    So as not one doctor has stepped into Dr Skinner's shoes (which would be nigh impossible) we have to look after ourselves due to many doctors adherence to the blood tests alone.

    You can source your own thyroid hormones and your TSH should be reduced to around 1 or lower.

    If you wish to you'd have to put up a new post asking for a Private Message to be sent to you to source levothyroxine.

    It might feel overwhelming but many have had to recourse to this and have recovered their health.

    There is also another thyroid hormone replacement called NDT (natural dessicated thyroid hormones) and it contains all of the hormones our own gland would have produced, i.e. T4, T3, T2, T1 and calciton (which is helpful for bones).

    Thyroid hormones are essential for the running of everything in our bodies from head to toe and if the medical profession neglect us, either by undiagnosing or underdosing we can develop more serious illnesses.

    It really astounds me that the prescribe Prozac etc due to your clinical symptoms alone (no blood test for depression) but ignore clinical symptoms of hypothyroidism of which there are plenty, weight gain, pain, depression, anxiety etc. etc. Try not to smoke and with the help of members you can become much better and in your control of your hypothyroidism. When on an optimum of thyroid hormones you weight may well reduce as its due to a low metabolism caused by hypo not by overeating as many doctors assume.

    Regards.

  • Thank you for all this info! I'm going to have the Blue Horizon tests and see what they come up with. I think I may have to self medicate. The list of symptoms is getting silly now. I've had two people in the last week ask me if I'm hypo as they are. So if they can notice why can't the docs? I will put another post up and see if I can get some links for ndt or Levo. I spose I should go and see doc again and see if he is stopping my prescription.

  • Just ask for a repeat prescription and if it's left out for you you don't have to speak to him.

    There are around 300+ clinical symptoms of hypo and you are right, it's your health and life and the doctor wont participate in improving it.

  • When you have a little bit of time - you may already have seen this.

    thyroiduk.org.uk/tuk/about_...

    mc_eid=afa50e8221

  • Thanks Shaws 😀

    I've got that list. I ticked almost every box when I was first told it might be my thyroid. I'm now going to reprint as some of the symptoms are worse, today my hands and wrists are killing me. Should I go and see doc and take it with me and see what he comes up with?

  • Your doctor will likely dismiss any other symptoms you get and joint/muscle pain is common if underdosed. All they are concerned about is the whereabouts of our TSH and it should be 1 or below but they are convinced anywhere in the range (up to 5 probably) is fine as you are on levo.

  • Why not make an appointment and ask him/her 'if I'm on thyroid hormone replacements, why am I getting more clinical symptoms, rather than them resolving as they should do Here is a list of my symptoms? If you take my Free T3 I might be low and that is one reason?

    We await his/her comments with bated breath :)

  • Well they only "invented" the blood test for depression very recently and looking at how stingey the nhs is with blood test I'm not surprised at all!

    I'm a little concern that you weaned yourself off prozac, have you had much talkies work done since you started? Anti-ds in my view, and personal experience (again oh how I differ from the doctors) are pretty useless unless you've actually worked through your depression/anxiety triggers and issues. Doctors might prescribe then like sweets but really they are there just to numb your feelings enough to do the work that will make the changes (and in the mean time, make you a semi functional human being that's very flat and numb, but medically, you're fine!). See how you feel without- I've been off it for about 8 years now and there's been time where it got really bad, but cbt and mindfulness apps (as well as actually taking steps to being optimally medicated for the thyroid- I'm one of those who use ndt) keeps it mostly at bay by reminding me of all the work I've done with a therapist.

    I feel you about being fat sweets, I gained 25kg in the first 3 months of being on anti-d. It completely suckes and it's taken ages for me to lose even half the weight (especially since I'm lazy and a massive foodie and had a eating disorder). But you know what? It's horrible feeling fat, but what's even more horrible is to eat only lettuces for the rest of your life and be miserable. I'd rather be a size 14 and happy than a size 8 and can't enjoy life.

    Levo works for most people and they are happy on it once optimally medicated. It didn't work for me, especially in the last 18m I had similar symptoms and worse, started feeling depressed and very flat again. I've been interested in swapping over to ndt for a few years and finally did it after a particularly bad session at the gp (he asked if I ever been depressed, I've actually was hospitalised for depression and I've been with the same GP for 10 years). Knowing that these goons would never be able to help me, I finally took the leap 2 months ago and it was amazing. People are constantly comment on how I look, hold myself and sound so much more positive. I'm filled with energy and most importantly, depression is now this abstract idea that I have at the back of my mind, something I had but definitely don't feel like it's anywhere near me now. It's been a complete physical and mental revival.

    So hang in there, hypo is not a condition we can beat but it's definitely one we can tame and work with.

    It's great you've got the tests- the next thing is that the forum can help you self medicate and supplement if needed. This is a super supportive forum and there's always someone to help you on the way of recovery. Whether you are a straight t4, t3, t3+4, ndt, there will be a combination that will work for you xxx

  • You are not fat and lazy. Your body is reacting to an unmanaged thyroid problem. It messes up the whole metabolism resulting in leg pain feet do pain foggy brain anxiety hair loss etc etc. We suffer and the doctors just put it down to depression which it is not. I have been to my gp a zillion times. Don't let them fob you off. Keep going and keep telling them. They have to help you. See a different gp at your surgery. That is what helped me. Some are more with it than others and look at the symptoms instead of looking at you like you are jyst winging. They would not put up with it so why should we.

  • Hi there

    You're not alone; I had 6.5 years of being fobbed off with various diagnosis (ranging from early menopause to you're so fat you're causing your own symptoms). Eventually (after gaining 4.5 stone in 3 years and having the last Dr convinced I was an alcoholic in denial - my liver was damaged due to lack of treatment) I moved GP practice. I asked everyone I knew locally for recommendations and settled on the one recommended to me by a friend who has a difficult and challenging personality, it's the first time I'd heard her be nice about something :-)

    I moved GPS and lucked out completely, my first appointment was with a GP that has an interest in being a Dr and who'd read up latest research in thyroid. I explained my symptoms, he asked if anyone in my family had thyroid issues (yes - I'm the only female over 35 who hasn't been diagnosed hypo on my mother's side) and he diagnosed me.

    My Tsh has never been elevated. My ft3 and ft4 was below range for the 6.5 years I'd been seeing the other quacks. But my current GP knows that I need a tsh below 1 and ft3 and ft4 in the upper range to feel well, your current GP does not.

    Did you feel any better on 25 mcgs? It wouldn't be much better as it takes a long while to get back to normal (about a year) but if you're hypo you should feel a little better after 6 to 8 weeks (possibly worse weeks 1 to 6). If you do then I'd suggest seeing a different GP at your current surgery and asking for your dose to be upped to 50 mcg with tests of ft3 and ft4 plus tsh after 6 to 8 weeks. If they won't do it consider moving GP practice and/or self medicating.

    They are following NICE guidance by a trail of levo but they need to get you to the right dose!

    Good luck

  • You might want to upgrade that blue horizon test to the thyroid plus eleven test so it can include vitamin D.

    Vitamin D is absolutely essential for good thyroid function. Especially if you find you have Hashimoto's.

    I am sure Blue Horizon can oblige if you give them a ring

    chriskresser.com/the-role-o...

  • Just wondering if you've had your B12 tested recently - many of the symptoms of B12 deficiency overlap with thyroid disease but difficulty walking, numb feet, depression, severe fatigue, brain fog, etc. could be neurological symptoms of B12 deficiency.

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