Back to square one! No help offered!

Any advice would be welcome .

Ok. I am currently on 125mg levothyroxine . Very symptomatic cannot lose weight swollen wrists ankles. Cramps that torture me most evenings etc etc. but after extensive testing told I am fine T3 T4 in milldle of test result TSH is very low. Endo decided my symptoms are due to very low oestrogen . Well, after chemical menopause 20 years ago due to hormone fed breast cancer I think it was a correct diagnosis! She was very worried about my heart, bones, thrombosis, weight gain, continued hot flushes, joint pain etc etc. she enthused about HRT . When I said it was very discouraged by my oncologist she said she would discuss with colleagues & professor in Oxford and get back to me with the options. That my quality of life is hampered by my conditions and she would do all she could to make it better for me. At last, someone on my side who was going to look at options and find a solution...

Well, After calling and chasing I finally had a call back. Basically the answer is no we can't help you. There are drugs to mask some of the symptoms. Basically antidepressants and a letter going to my GP who knows not much at all re thyroid and has never ever prescribed T3. and will only now offer what is on the letter. I as yet do not have a copy! They don't know or won't take a chance of stepping away from the usual. I just see a room full of men deciding to let me live with my symptoms while I slowly decline into an early old age . If anyone has understanding of other solutions or a leading edge endo who could help. Suggestions welcome. I am not depressed but who knows. I may need the suggested pills soon if this fast decline goes on. Btw. No checks arranged for said risks to heart, bones after scaring me. I am now back where I started after fighting so hard to get endo appointment taking over a year of visits and tests , ??

15 Replies

  • Hi Muriel,

    I am sorry you are feeling so bad on levothyroxine and it must have been a great disappointment that there was no positive help from the Endocrinologist. Obviously those higher up to her have different ideas. They don't increase your hormones even though you have clear clinical symptoms and are referring most probably only to your TSH. I was the same as you when on levothyroxine - could only shuffle about and whole body/joint/muscle pain.

    Did they check your Free T3 (I assume not). If I were you I would get T3 although self-medicating is not advised but I don't think you have an option to at least try adding some T3 to a reduced T4. I was fortunate enough to notice an immediate improvement. I am now on T3 only and am well with no pain and health is normal. I know it might not work for some but the more I reduced T4 and increased the T3 the better I became.

    What is the point of offering you anti-depressants (that's their cop-out when our TSH is 'in range'). There is no blood test for depression but they are willing to prescribe anti-d's due to the clinical symptoms. They don't offer adequate/sufficient thyroid hormones for your clinical symptoms even though you have hypothyroidism. I think it's very confusing plus the patient doesn't recover their health or may develop other more serious illnesses. T3 is used for depression and considering that T3 is the active hormone our cells need for us to function the T4 might not be converting to T3 sufficiently for our needs.

  • I have had my Free T3 checked privately and it is just below mid range my T4 is just slightly above mid range so not optimal, and TSH is low. She was delighted with results and would not hear of addition of T3 I am interested to try. Could you tell me how I would start to go about this. I did say to my endo that if they did not offer help I was likely to self medicate.

    Not really prepared to mask with anti d meds. Been down that road !

    When I said I am really worried about my heart health, weight despite my eating carefully, (though I am no saint) and exercising every day her only offer of a solution was bariatric surgery !!

    BTW I have autoimmune issues too though no diabetic symptoms, also had cortisol test. All normal?

    Thanks for the artical slowly getting educated but so much to learn, it's hard to become expert enough to argue my case against medics.

  • Muriel, can you post your recent thyroid results with the lab ref ranges and we can check whether you are optimally medicated?

  • I am waiting to get hold of most recent tests. I will come back to you then. So I have most up to date results Thanks

  • Muriel, post them in a new question as updated old posts can be overlooked.

  • You could also be low in magnesium.

  • Probably low in most nutrients!

    Muriel, exercising every day is probably not helping. It could be making you worse because exercising uses up your T3, and you Don't have enough to begin with! Besides, it's not going to make you lose weight, because your weight-gain has nothing to do with calories, and all to do with you being hypo. If I were you, i would just do a little walking and/or gentle swimming. Nothing strenuous.

  • Hi, I have started supplementing with magnesium , and others too. I know I am unlikely to lose weight. But you know the looks when you say I can't lose weight because. Even the doctor gives you that, calories in calories out rot. And as mentioned in my post the endo actually suggested bariatric surgery! I am heavy but work hard to stay at 13 stone! 30 BMI Eat less than all around me with no reward. I didn't realise I would be depleting my T3? Is that why I feel fatigued and aching even though not pushing on the excercise? Looks like I am in a lose lose situation here!

  • No, you're not in a lose-lose situation. Exercise and diets (you're probably not eating enough!) won't make you lose weight, but getting your hormone levels optimised will. Doctors know nothing about nutrition, weight-gain, weight-lose, so ignore them. In my experience they are just judgemental and rude! But have no idea how to help you.

    If you are not eating enough calories, that is also going to hurt you. You need about 2000 a day. You need calories for every single movement you make (walking, breathing, digesting...) including converting. If you're not eating enough, you won't be able to convert that T4 you're taking into the necessary T3, the active hormone. So, my advice would be to try eating more!

    Actually, what would really help you is to get your hands on some T3. Your doctors sound extra ignorant, so I doubt they are going to help you there. The only thing to do is what so many of us have had to do, and that is get your own T3 and add it yourself.

    But in the meantime, stop exercising and stop dieting. If you are eating so little, you are bound to be low in most neutrients, not just magnesium. Being low on some nutrients can also make you put on weight - oh, it's all so very far from the simple calories in vs calories out that most people imagine! It's very complicated! So, can you get ferritin, iron, B12, folate and vit D tested? Some things you can't just supplement, you need to know where they are in the range because too much iron and vit D can be bad for you. The B vits you can just go ahead and take.

    I honestly Don't understand why some people are so concerned about other people's weight. How would they like it if people told them how ugly they were and to get a face-lift!?!?! ;)

  • Hehe! Grey goose, you did make me laugh talking about doctors being interested in other people's weight.

    I just just had a doctor try to bamboozle me horribly about exercise! First it was the stare down the nose, and remarking I was going to have to work harder then this if I wanted all my mobility back. Then when I said I exercised regularly, oh, I must be doing it wrong (too much) . And when I asked if there was any advice for doing it right, apparently it's different for everyone and have had no advice! Presumably the main guideline being that whatever I do, the weight still turns out to be my fault :p

  • Oh, tell me about it! And was this doctor slim and svelt? I find the ones that go on about my weight are usually in need of refit themselves!

    I'll always remember a doctor I saw during my first pregnancy. I put on exactly two stone during my first pregnancy, and lost exactly two stone at the birth. But this charming person was going on about two stone was too much blah blah blah. I looked him up and down, and his stomach was so large that he could barely reach the examination table, and his jowls were hanging down to his clavicle, and I said, well, at least I'll be getting rid of all MY weight in two weeks time. I thought he was going to cry. He said, and you Don't think I have a good reason to be fat? I said, I Don't know, but people in glass houses shouldn't throw stones! Not very kind, perhaps, but I was so sick of him going on at me about something I couldn't control! Oh well, I just have to hope it made him more tactful with his next patient. But I doubt it.

  • This particular consultant cheerfully admitted to me that he is completely sedentary. Said something like "Im not surprised you're tired out going for long walks, I couldn't manage it".

    I've come to the conclusion doctors know nothing about exercise and diet - let alone proper nutrition. My personal favourite was a nuclear consultation who was overseeing my RAI - so I had a TSH of 100 or so when I met her, gaining a stone each time. She had a big weight problem and struggled to walk through the corridors. When I asked her when I could get to trying to lose the weight she said "You've been through a lot, dear. What I always say is, if you want a Mars bar, have a Mars bar.". Of course I hadn't been eating anything of the sort! The implication if you've gained weight through their tortuous machinations you must be eating an unreasonable diet!

    Of course her skinny counterpart in the other department advised me to "diet now, it will only get worse", when I couldn't stand up to get get to the kitchen or supermarket. I just ate ate whatever Mr Heinz and Co could provide!

  • Oh, they have no idea, do they! No, they Don't learn about nutrition and stuff at med school, so for them, it isn't important. They firmly believe in the calories in vs calories out mythe.

    The funniest thing was when I was seeing a consultant surgeon for my back problems. He asked my profession. I said actor. He said to his secretary 'write down sedentary profession'. Ha ha! He obviously had no idea how strenuous it can be rehearsing for hours on end. In some théâtres the dressing rooms are Under the stage - or three floors above! - so you're running up and down stairs all the time. Or how about 12 hours on a film set doing the same thing over and over again until it's right. And that's without counting the little jobs you do when you're 'resting'. Mine was usher in a theatre, running up and down showing people to their seats. It has absolutly nothing to do with sitting at a desk all day. But, they have no idea how the other halves live.

    This same guy said to me, after my operation for a slipped disc that I didn't have, 'from now on, you will have to make your bed and clean the bath on your knees.' And when my jaw dropped open, he added 'Of course, I have no idea how this works in practice, because I've never done it. We have a cleaner to do all that'!!! Completely on another planet!

  • Haha! Love the cleaner story! I often think medics have no idea how it feels to not be able to do normal things like get dressed or sorry out meals. Am not surprised some of of them done done even know how it feels to just do these things at all :p

  • Well, it's perfectly understandable that he has a cleaner, because he is a surgeon, and they work long hours. And his wife is an anisthetition (spelling?) so also works long hours! But perhaps he should talk to his cleaner a bit in order to understand how normal people live! lol

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