Newly diagnosed-really worried

I got my 1st packet of Levothyroxine yesterday. The GP didn't give any advice so I thought I'd take a look on here for some tips...and now I feel like throwing the tablets in the bin. I never thought for a moment that I'd take it and turn into Superwoman but so many people taking the stuff still have weight gain, hair loss, depression, insomnia and many other things that I really don't see the point in taking it. NDT is touted as being the miracle cure but it seems people have lots of problems with that too. I have lots of symptoms but don't seem anywhere near as bad as a lot of you, and but I am so worried that once I take this stuff it will upset the apple cart. I always struggle with my weight and it's very worrying that the four people I know on Thyroxine are all massively overweight. My GP, rather naively I thought, said it made your metabolism work properly and I would lose weight. After reading posts on here I can see that's definitely not the case.

I'm sorry to whinge but I'm sitting here in tears and don't know what to do for the best.

27 Replies

oldestnewest
  • Hi infomaniac - most people feel well on thyroxine - I think about 85% (as long as they are able to raise to the optimum dose), they just don't hang around on here because they feel well and are getting on with life :) I have 3 colleagues on thyroxine and they all feel well and are slim/normal weight.

    There is every chance that you will fall into this category - so try not to worry and take the thyroxine :) Good luck and you know where we are if needed. xx

  • There are over a million hypothyroid people in England (simple for numbers - not ignoring the rest), of those a bit over 8,000 are members here. One of the main reasons for them being here is that they are not getting diagnosed or treated as well as they feel they should be.

    That allows for there being an awful lot of people out there who have no reason to sign up here - they are doing fine, thank you very much.

    I suspect you know more than four people who are on levothyroxine, but maybe you don't know that they are!

    Tablets in bin 100% definitely don't work.

    Tablets in stomach (and taken well away from food,drinks other than water, supplements and other medicines) might work. The only way of finding out is to try.

    I take levothyroxine. Not everyone does well on it, but nor does everyone do badly on it.

    Rod

  • hi there, I understand totally what you are saying, I am in a similar position to yourself and have recently started a trial of thyroxine. I also like you have some signs/symptoms of thyroid probelms but not anywhere near the degree of many on this site.For that I am very grateful.BUT as I understand it,it is probable that the thyroid has, and will continue to decline causing more serious issues to raise their heads as well as the more minor ones worsen.It really is for that reason only that I have started this trial -to see if these minor niggles improve and to hopefully pre-empt the more major issues occurring (or at least postpone them!).i like you was uncertain to take them or not. I am now almost 8 weeks in and did have a good improvement from weeks 2 to 5- not quite so noticeable now but I am still I would say,improved on what it was before thyroxine. I am told this is not uncommon and probably means I need an increase in dose and I would second that.So IMHO in your position I would say give it a try and just see if you notice a difference however slight your issues may seem now,as did mine, you may see that actually you can feel even better than you do now.For me, I know without double I had a window there of feeling different and it was,still is a bit, great- and I have to say I didn't feel what I would class as ill before but it has shown me there was room for improvement.It may well be the same for you,give it a try.If no difference you can always ditch it later.

  • I know several people who take levothyroxine and they are all very well. Unfortunately I was not so lucky!

    As the others say on here, the chances are you will do very well but if you don't you know where to come :)

    Carolyn x

  • I was diagnosed last summer and, like many people, am doing fine on levothyroxine. When my dose is correct I can loose weight by watching what I eat and getting enough exercise. My dose was put down a few months ago and I started to feel bad and gain weight again, but have gone up a bit and am getting better. When I was first diagnosed my doctor said not to worry about levo as it is a natural hormone and just replacing what I cannot make. She also pointed out that if I didn't start now I would have to in a couple of years anyway.

    I agree with previous writers that pills are no good in the bin and hope that you will give them a try. A few months before I was diagnosed a friend was and she had real problems with having a permanent condition, saying that her parents had never been ill, and she could not cope with the idea of not being a well person. This is difficult for all of us - I already had a couple of chronic conditions and went through that when I was diagnosed as asthmatic a few years ago. I find it helps to be grateful that there is an accessible, simple, and generally useful cure and look forward to an improved quality of life as a result of it.

    Good luck.

  • better to be on it than off it.

  • bear in mind that the people on the forum are the people with problems. If people are well on thyroxine then they don't feel the need to look for a solution by going on a forum and you won't hear from them so much.

  • Hi everyone, thanks so much for your replies. I've calmed down a bit from this morning and have been considering my options. I know you are all right and I should try Levo but I have enough problems with my weight and hair already to risk either of them getting worse. It might work for me but without wanting to sound like a complete pessimist, it might not and I could end up in a worse position than I am now.

    I went to the GP yesterday to ask for a referral to Dr Skinner and really, that's the way I still want to go. I know it's expensive but at least it will be treatment tailored to my needs rather than a "one size fits all".

    Knowing my luck I Dr Skinner will prescribe Levo @ 25mg and I'll be back to square one!

  • You are right. From what I understand Dr Skinner will always give the Levo a chance before going to anything else. I still think you should give the Levo a chance while you are waiting for an appointment. I have been on Levo for 30 years or more and it does work for me (so long as I am on the right dosage). Being pessimistic is a Hypothyroid trait, but please give it a try - you owe it to yourself.

    If nothing else, you will know if it works or not by the time you see Dr Skinner and then maybe you can jump a step!

  • Hi infomaniac,

    I have been on levothyroxine for the past 5 years. I went into my GP saying- I'm 55 and feel like I'm 85 I told him my symptoms he did a blood test and he diagnosed a thyroid problem. I, like you, was concerned about side effects etc but it has been great for me. In the first 6 months it brought my cholesterol down, I lost weight especially around my face, as I was looking quite bloated. I don't snore any more, which was a real problem! I did have a husky voice but that has gone I can now sing again, well to the best of my ability!! I have more energy and feel more like I should for my age!! I did have swollen ankles for a short while in the first year, it does take a while to get the dose right - but now I'm fine!!

    I think a lot of positive thinking and not to be too impatient is a must!

    All the best.

  • Hi Twoshoes-really glad everything is working well for you :-) I definitely need to think positive don't I! I'm really not normally so pessimistic but I am just really scared of rocking the boat and making my situation worse. I've never read any bad reports from anyone who has seen Dr Skinner so I'm hoping for the best...if my GP will still refer me of course!

  • Hi Informaniac, Sorry to be a bit dim, but who is Dr Skinner? And yes, you must think positive :-)

  • He's a doctor in Birmingham who rather than going off blood tests, treats patients by assessing their symptoms, which can help a lot of people who can't get medication from their GPs (which was me up until yesterday!) or are still struggling after being diagnosed. You have to have a referral from your GP in order to see him and it's quite expensive but he has very good feedback.

  • Oh I see! I imagine your GP is just as capable of diagnosis and monitoring your treatment. I know in the first year I had quite a few blood tests to get the dosage right. But I think you have to trust your GP. It was certainly a turning point for me I felt so much better even before I took the Levothyroxine, just the fact that it was acknowledged that I had a problem and that there was something I could take to make me feel like my old self which it has!

    I do hope you can decide to do what is best for you!

    Kind regards

  • I am not just being contrary but realistic when I say that not everyone has a GP they can trust! They SHOULD be capable but in a huge number of cases they seem to be choosing not to actually exercise their capability. Take my own case as an example.

    On 150mcg Levothyroxine for 23 years, doing fine, cholesterol 4.7, healthy heart, only slightly overweight but certainly not obese, working full time, happy, active, despite having no thyroid. Occasional hayfever in summer but rarely ill.

    Capable doctor but new to me, does blood tests. Decides on the basis of my TSH level that I am overmedicated. Cuts thyroxine to 100mcg.

    2 months later, I have cholesterol 9.7, three TIAs, atrial fibrillation, 1 stone heavier, depressed, not working, not sleeping, in fact not doing anything much at all, full-blown asthma all the time, acid reflux plus constipation alternating with IBS/Diarrhoea and agoraphobia!

    Instead of putting me back up to 150 Levo he gives me Statins, Antidepressants, Blood thinners, two kinds of asthma inhaler, nasal spray, amitriptyline for insomnia, codeine for my Diarrhoea and colon pain, and PPIs to counteract the acid reflux and the stomach pain caused by the blood thinners.

    I refused the anti-ds and stopped the statins amost immediately because they almost destroyed my muscles. Of course that meant I continued to have cholesterol sky-high - it was 10 at one point.

    Six years later in December last year I began to take control and DEMANDED that he restore my thyroxine - thanks to this support group which gave me the courage to stand up to him - and I am now on 125 (he would not put it up any further because now I actually have an enlarged heart too, thanks to being starved of thyroxine for so long.)

    I no longer have asthma, I am sleeping better, cholesterol already starting to fall - 8 this month - lost 6lbs in weight, no longer depressed, constipation/diarrhoea cycle nearly back to normal, managing to go out alone, and started doing more around the home including clearing the ironing pile!

    But, guess what! he wants to reduce it again on the basis of my TSH!

    Would YOU want to trust a doctor like that?

  • That is absolutely shocking Marram-how can they be so short-sighted?? I would love to know exactly why they think it's better to push anti-depressants and statins on to people?? He should appreciate that you know your own body! Stand your ground and don't let him bully you.

  • That is exactly what my husband called him - a bully. I even showed him the Dr Toft book which gives him ALL the information he needs to optimally treat an athyreotic patient.

    He keeps telling me 'my thyroid is fine'! I know sarcasm is the lowest form of wit, but I could not help myself (inherited it from my Nan, I reckon) and I replied 'Oh? you've heard from it, have you? I personally haven't seen it for over 30 years. Is it on a Mediterranean cruise or something?'

    They say that when you are hypothyroid you may be a total wreck but the last thing to go is your sense of humour. Thank God, say I.

  • Haha-love it!! Wish I could have seen his face!

  • You sometimes have to laugh or you'd cry

    ;)

  • I've been on levothyroxine four weeks now after thyroidectomy and as far as I know, haven't had any side effects. Definitely no weight gain and definitely no hair loss. Good luck with whatever decision you make!

  • Hello Marram,

    I'm so sorry that you have had so many problems, perhaps I'm just lucky having a Doctor I can trust. My Cholesterol was 12 before I started the Levothyroxin but it would not go below 7 even with the thyroxine so I am now on statins and it is now 4.5 which is great I feel fine on it,I know we are all different.Could you see a different doctor who will listen to you? I do hope things continue to improve for you.

  • Twoshoes, I hope you continue to be well, have you had any ill-effects from Statins?

    I was slowly becoming completely crippled - even worse than the Thyroid made me! As soon as I stopped the statins my legs began to recover. It quite clearly states on the Patient Information Leaflet that stains should not be given to patients with thyroid problems.

    Is it possible that you could benefit from more thyroxine? If your TSH is above 1 then you are possibly being under-dosed.

    Of course, if you are perfectly well and not feeling any ill-effects, then who am I to rock the boat?

  • Hi Marran,

    I was taking a higher dose of thyroxine for a while but my Cholesterol was still high,my good cholesterol level was really low so we were not overly concerned. But we decided in the end to get it down using statins was the best route to follow and I feel fine, I did find that my legs ached a little for the first month or so but I'm fine now!

    My grandmother died at my age of heart problems, so I feel I would rather take statins than keel over.... fingers crossed!!!

  • Don't blame you :)

  • Please don't be fearful. I've been taking thyroxine for thirty years and have been fine. As others have said - it is the people who are not doing so well that need this site and although I'm here because my sister got poorly (also after being fine for many years on thyroxine). However I have learned that anyone even those that thyroxine works for them need to take extra care of their health - eating well, managing their dose carefully, keeping tabs of symptoms and making sure vitamin levels are optimal.

    Good luck for the future.

  • Hi info, chances are your own thyroid gland will continued going downward anyway for whatever reason it started to fail. You should take your T4 and can always try for Armour later. I don't know if you had antibodies or are having an attack but you certainly want to intervene if it is happening.

  • I do have antibodies and just two weeks ago I was told my TSH was borderline and needed no medication but lo and behold this week a different GP prescribed Levothyroxine!

    I do have symptoms but am not overly tired, cold, exhausted etc like many others so while I know I do need something I feel I can wait till I (hopefully) get to see Dr S. I'm pinning all my hopes on him so I hope he's as good as everyone says!

You may also like...