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thyroid misery

  • #2
    Registered Users Posts: 22 ✭✭✭ tigerb


    Hi -Hoping for some uplifting stories on the thyroid. I was diagnosed early last year with underactive thyroid TSH of 90 and got a severe chest infection. Trying to regulate it has been a nightmare -my endocrinologist was useless so I am going to a new one next week in vincents. I now have hyper symptoms, and my TSH has gone to .1. I have been told I have autoimmune disease (some chinese name) and once I get the correct dose of thyroxine I will live a normal life. Is there a support group for those with thyroid. Felt my initial endo never took me seriously -maybe cos the thyroid isnt the worst thing you can get. My dose seemed correct after Christmas and I felt top of the world. The fuzzy head is awful -sometimes in the car, I have to think of where I am going. Cant wait to get it regulated


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Comments

  • #2


    You have Hashimoto's thyroiditis and although the correct medication can help, not everyone always feels "better"

    I have been on meds for 6 years now and have been to endo once - was an awful experience for me.

    Have a good doc who also have condition so I think that helps. He's happy to keep my TSH quite low as I feel better the lower it is.

    I know myself now whether my levels need to be tested based on how I feel but it is an ongoing thing. I dont ever feel normal - always tired and memory isnt what it used to be

    I know some people who go on meds and they feel fine again, I hope its like that for you too

    Remember, as its an auto immune disease you are more likely to develop others so keep an eye out for those too - I have coeliac disease also. Have to say since going GF it has helped with a lot of my thyroid symptoms


  • #2


    thanks for the reply. I heard diet is a big thing esp sticking to gluton free products

    I went to a kinesiologist who told me to take zinc as I had aluminium in me and there are articles on the internet abt traces of metal linked to hashimotos - I must go back to her as I did start feeling better at the time -she told me I was lactose intolerant -just find it hard to cut out milk and cheese.

    I see there is a Dr McGovern in Goatstown who looks at thyroid problems and explores other treatments besides thyroixine.

    God its a complicated disease and affects so much! I have visibly aged in the last year


  • #2


    Welcome to the club! I think one of the most important things to do is to educate yourself as much as possible, because it appears the general medical attitude is you should take Eltroxin and you're going to be just fine. And if you're not, it's because you're lazy, don't do enough exercise and eat too much and it's all in your head! You need to find a doctor that is willing to work with you but you need to know your stuff. So I would recommend you get a couple of books on the condition and read up on it. I was diagnosed 2007 and I am still struggling to find what works for me, but at least I now have an endo who is working with me. I have heard both raving and disappointing stories about Dr MaGovern, but have never been myself, so can't really help, but I heard he runs a lot of tests so that might be good to start out with and he is willing to prescribe desiccated thyroid. I would also get that lactos intolerance checked out/confirmed medically, if you really are then you should defo stop eating it.


  • #2


    totally agree about educating yourself -have learned loads already.I will start a thyroid diary. My head is relatively 'unfuzzy' today and I am feeling fantastic . Funny how you really appreciate the days when you feel ok.
    I see how there is a thyroid group in the UK -is there anything similar in Ireland


  • #2


    No, there are no groups over here, although we could really do with one! Glad to hear you're feeling better, long may it last!!!


  • #2


    Hi tigerb,

    Here's my history;

    Diagnosed Hypothyroid NOV '09 with TSH of 75. Put on 75mcg of Eltroxin. 100KG
    Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
    Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
    Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
    Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
    Blood Test JAN '10 TSH of 5. Kept on 125mcg of Eltroxin. 90KG

    Today, current weight is 89KG, Ideally I should be in 80 - 85 bracket but I I'll get there. Managed by my GP, no endocrinologist, I don't have Private Health Insurance. Here's what you should do;
    1. If you smoke, stop right away and stay off them.
    2. Cut out junk food. No pizza, kebabs, battered burgers etc... treat yourself once a month with thick cut chips.
    3. Stay within safe units of alcohol. Have at least 5 days a week without alcohol. Don't get completely hammered.
    3. Prepare your food at home in oven/grill. Throw out your deep fat fryer and frying pans. Avoid veggies like turnip, broccoli. Eat plenty of fish (4 times a week) and fruit (5 a day). Reduce on white bread, sweets, cakes etc....
    4. Start exercising. Cycling and walking are good to start off with. Learn to swim if you can't since swimming is good. Steam room and sauna help a lot too.
    5. Try Yoga. Some poses really get the blood circulating, legs in air while lying on back gets blood flow gushing in around thyroid area, which is hugely beneficial. Its also a great de-stresser and enjoyable.
    6. Go to the seaside as much as you can, walks along the beach are great and the iodine in the locality helps your thyroid.
    7. Believe you will get better, there's no reason why you shouldn't.
    8. Avoid people who annoy you or stress you out. Take no sh1t from anyone who is needlessly on your case.
    9. Go out and do things, call round to visit friends, get out and about, find things that interest you.
    10. Educate yourself, plenty of info on the web.
    11. Oh and I nearly forgot, and its really important.....TAKE YOUR ELTROXIN ON AN EMPTY STOMACH FIRST THING ON WAKING UP IN THE MORNING AND DON'T EAT FOR 1HR.

    Best of luck. I'm getting tested again next week, I feel great now so I expect the TSH to be in around 3. My T4 is around 20, so that needs to be looked at but I feel really good, not this good in about 6 years, so that's the main thing.


  • #2


    Excellent post LimerickBishop, and it looks like your GP has managed your thyroid meds really well, and no doubt the lifestyle changes you have described have helped immensely :)

    If I may though, I would just like to add an observation or two on what you've written.

    Managed by my GP, no endocrinologist, I don't have Private Health Insurance.

    For those who are unsure of how the Irish health system works**, - access to an Endo and Private Insurance *aren't* mutually exclusive. ;)

    Your GP can refer you to an Endocrinologist, if he or she feels it is necessary, ie if your thyroid isn't responding as well to changes in meds (as yours clearly has LimerickBishop) or there are other complications to be dealt with...etc.
    Under the public system, this is free, and all subsequent visits to the same endo (or his registrar/interns etc) are also free, as are any extra tests he then refers you on to....eg I have been seeing an Endo for the last few years, and he has also referred me for several CT scans etc...all free...and the 'wait' really wasn't all that long. I also found that once you're in the hospital's system, subsequent referals are very quick for appointments. At one point I was under an Endo, a Dietitian, an ENT consultant (goitre investigation), an ENT surgeon (total thyroidectomy) and an Opthalmologist (thyroid eye disease) - all free, on the public system.
    Now I just have the Endo and the Opthalmologist, who will both be ongoing for the foreseeable future..

    ** - and despite the begrudgers, in my experience, the public health system does work, and for me it has worked very well! YMMV

    6. Go to the seaside as much as you can, walks along the beach are great and the iodine in the locality helps your thyroid.
    .

    As far as I am aware, additional iodine is really only beneficial if your thyroid disorder is specifically caused by an iodine deficiency, which I believe is very rare in this part of the world, due to our improved diets etc. If you're not iodine deficient, additional iodine is thought be more harmful in the long-run.

    However, a walk on the beach is a wonderfully therapeutic experience on so many levels, really great to clear the head and put a bounce back in your step, so a great feel-good exercise...but the exposure to iodine, really isn't all that significant. :)


  • #2


    Thanks for the clarifications there dollydishmop.

    Getting bloods taken tomorrow, should know the results next week.

    Nice weather lately is inspiring me, I went for a 10km jog this afternoon and did it in 1hr. I'll probably feel a little stiff around the legs tomorrow but I hope to keep at it. I stretched before and after but sometimes that's not enough to prevent stiffness.


  • #2


    hi
    i have a underactive thyroid since birth so i dont know what life is like with out a underactive thyroid.I do struggle with my weight and get very tired at times other than that life is pretty normal,just stick to a good diet and get some exercise.My gp does my bloods so far no need to see any body else.
    I have developed arthritis in my knees so my gp is trying to find out if the 2 are linked.I am currently taking 200 mg of Eltroxin daily.
    Can someone tell what one would put in a thyroid diary? I have not seen a endocrinologist since i left the care of crumlin over 17 years ago.The body does feel a bit battered some mornings and i get fuzzy head now and again so i might get my gp to set up a meeting with a endocrinologist at some stage in the near futher.Thanks LimerickBishop you have some good tips in your post.Best of luck tigerb but my sure everything will be fine :)


  • #2


    Another member of the club here, although I ended up underactive as a result of radio-iodine ablation treatment for graves disease which was causing an over active thyroid, the standard drug treatment worked for a while untill I became allergic to the thryoid meds mercazole I think, it's a good while ago now.
    Unfortunatley while waiting on the list to be treated I ended up having a thyroid storm which was probably the worst thing I have ever experienced and I ended up as an in-patient for a month.

    Now like the rest of you I'm on eltroxin every day for the rest of my life but it's easy enough to manage with just an annual blood test now. After a while you will be able to tell when your dosage need to be adjusted, It's the legs that tell you.

    It's a pain sometimes but when I look at the fist fulls of tablets some other people have to take on a daily basis it makes me realise I'm not badly off at all.


  • #2


    Hi tigerb. It appears that you are Hypothyroid and also have Hashimotos. Take your Eltroxin first thing in the morning on an empty stomach and do not eat for at least a half hour afterwards. Do not take any iron or calcium supplements for at least 4 hours after your med. When you get your bloods taken - get them done early in the morning e.g. before 9a.m if possible. There is a very good Thryoid support group website but I don't have it at hand. I will look it up for you and post it. Take Care.


  • #2


    Here's my update;

    Diagnosed NOV '09 TSH of 75. Put on 75mcg of Eltroxin. 100KG
    Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
    Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
    Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
    Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
    Blood Test JAN '11 TSH of 5. Kept on 125mcg of Eltroxin. 90KG
    Blood Test APR '11 TSH of 4. Kept on 125mcg of Eltroxin. 89KG

    My GP said he's very happy with my progress. I know the band for normal level is 1.0 - 3.2, I feel good at 4, and maybe can get down a little lower in the next few months. T4 is around 20 now.


  • #2


    I have Hashimoto's disease and that's why my thyroid is under-active.
    I was feeling pretty tried all the times and had first signs of depression.
    I first went to see GP in November 2010 but he told me everything is OK. He said that I feel bad because of the weather, I put on weight because of my bad diet etc...he didnt do any blood work.
    A month later I was feeling even worst and decided to see another GP in Salzburg/Austria(I was on holiday there at the time).
    Although my TSH level was OK, my antibodies were very high.
    Since I'm on 50mg levothyroxine I feel much better, of course there are still days when I need to take a nap after work :) I've lost 3 kg since January, I have much more energy and I'm happy.

    Good luck to all of you to find the correct dosage of your levothyroxine or other drugs.


  • #2


    Thankyou all so much for your replies. It is so great to know you are not on your own and the tips are very helpful. I do not have any friends with the disease so was feeling so isolated. I am feeling better over the last few weeks and went to get a blood test this morning.I really appreciate the good days. I am on 100g mon -thur and 50g for the remainder of the week. It took so long for me to be diagnosed - It was brought to my notice at a medical I took in the Blackrock clinic in summer 2007 but each doctor I went to said TSH was ok so no further tests were done -my gut told me it was the thyroid and last year it all really kicked off when I got an infection. I am not overweight, in fact I find I need to eat a lot or I get dizzy and anxious. I am taking D3, B12 and B6 .

    In addition I am told at 43 I am probably going through the menopause -the blood tests will confirm it -not sure of the relationship with the thyroid As if I havn't enough to put up with!

    Have any of you inherited thyroid problems or were there other triggers

    Really impressed LimerickBishop how you have brought your TSH down gradually and documented by month. Definately do a spreadsheet for myself as I have load of copies of blood tests done over the last 12 months

    Harr, by a thyroid diary I mean a logg of the symptoms (if any) you get on a daily basis or during a bad phase-I find that the thyroid affects so many things and its easy to forget if you dont go to GP or indo very often.

    Kasia84 like you it took a long time for me to get diagnosed and my antibodies were 652 at the beginning of the year. I have felt depressed but now dont know if its cos of the early menopause.. the joys...

    Redshift when you mention its the legs that tell you that you need to adjust meds, is it the aches in the legs and the feeling of blood circulating

    Thanks again to all.


  • #2


    Noone in my family seems to have had it (my mum and all grandparents have passed so don't know about them), so I have no idea what triggered it. Got diagnosed in 2007 with TSH>100, my antibodies were around 400. I started on Eltroxin and was doing ok-ish for about a year and a half and then I started experiencing mad side effects and I still have problems with it, but that's a long story...
    But anyhow, my main symptoms are that I am bloating up like a baloon and my digestion slows right down, my eyes are so dry I can hardly open them in the morning, I get really bad carpal tunnel syndrome - and the legs, well they sometimes feel like lead - I guess it's the same as with the hands, it's the lymph that's not being transported fast enough, so you get swelling in the legs and in the hands (which in my case leads to inflammed wrists - other people get tendonitis in their feet). Funnily enough, brainfog has never been one of my problems, although my memory isn't as good as it used to be, but that might just be age! I've also never really experienced the extreme coldness that some Hashi people get. It appears to affect different people in different ways, it's almost like it targets specific systems of the body and it differs from person to person...
    I have also come to believe that simple substitution with Eltroxin will actually never really return you to the way you used to be before. hasn't worked for me and hasn't worked for most of my cyberfriends I've been chatting to. It's a very fine balancing act and very much undertreated by medics in this country. They all seem to think that all you need is T4 and if TSH and T4 are within the normal range you are grand. Thankfully after a very long time I found an endo who is willing to work WITH me rather than patronise me, but still, I have yet to find a solution to my ailments... Anyhow, the best we can do is post on boards like this, compare notes and share experiences and educate ourselves in order to help ourselves...


  • #2


    tigerb,

    thanks for your kind words.

    I practice yoga every day now. I attend a class once a week and practice at home the other days with a cd playing to guide me. It works. I do salutations to the sun and the plough and half shoulder stands. The plough and half shoulder stands bring the bloodflow down from the legs towards the throat, so your thyroid is getting really well looked after with this circulation of blood. Legs and feet also benefit from this circulation.

    I also have 2 days in the week without eating meat, I like seabass and hake a lot so I eat it a lot. It also makes red meat a real treat when you don't eat much of it. Your mentality will change, and before you know it you won't want to eat snacks in between meals and you'll feel content and the weight will go down and your body will tone up.

    I weighed myself this morning, 87.7 Kg. Haven't been this low in about 6 years and I feel I can lose some more. Lost 1 inch in the last week on the waist too.

    So, to summarise, take yoga classes and practice at home, you won't look back. You can't injure yourself or suffer any muscular pain from doing yoga, so its ideal for hypothyroid folks like us.


  • #2


    Hi, I am in Donegal, and have also been diagnosed with Hashi's. I am determined to do this naturally and use 'Armour' dessicated thyroid. My GP seems to know nothing about it, but then I wouldn't expect him to after a year of telling me there was nothing wrong with me! (I could barely walk with weakness!:confused:). *sigh* Can anyone recommend any endo or GP who is open to prescribing natural thyroids?? Thank you in advance!!
    Purr


  • #2


    Hi cltt97,

    It is true what you said:"(...) It appears to affect different people in different ways(...)"
    Over the past 2.5 years I've been feeling gradually less well as time progressed.
    My first GP wasn't helpful at all, even after I informed him that Hashimoto's runs in my family. He just ignored this information and blamed the weather for me feeling bad. How can you blame the weather for mild depression, mental fog, weight gain, fatigue, constipation, cramps, hair loss and experience the extreme coldness??:confused:
    Thankfully I found a great GP and he's helping me to get better.
    I wish you all the same, getting better and hopefully overcome thyroid disorder.


  • #2


    I know of one GP and two endos that are prescribing armour, but they are all based in dublin...


  • #2
    Hi all, I'm hoping someone will be able to offer some advice!

    I was diagnosed over a year ago as hypothyroid (after years of being told I was depressed, ate too much and had IBS) and put on 50mg eltroxin. My TSH starting was 16 and it came down to 6 on this dosage. My GP says that this is borderline and therefore I dont need a higher dose of eltroxin. But I still feel awful. I'm so tired and my concentration is awful, i was an intelligent person but now it seems like i'm stupid, not to mention cold, constipated, fat and miserable. My GP is adamant that this has nothing to do with my thyroid as i'm getting "optimal treatment" and has done other blood tests which show that there is nothing else wrong with me. She keeps offering anti depressants which i refuse to take again, and now has told me that although she believes me about my symptoms there is nothing that can be done about it and I'll have to learn to live with it.

    My income is quite low and I'm on a medical card, but I will find the money if I could find someone to help me, who doesnt treat me like a hypochondriac or a fantasist. Can anyone advise me?


  • #2


    Hi all, I'm hoping someone will be able to offer some advice!

    I was diagnosed over a year ago as hypothyroid (after years of being told I was depressed, ate too much and had IBS) and put on 50mg eltroxin. My TSH starting was 16 and it came down to 6 on this dosage. My GP says that this is borderline and therefore I dont need a higher dose of eltroxin. But I still feel awful. I'm so tired and my concentration is awful, i was an intelligent person but now it seems like i'm stupid, not to mention cold, constipated, fat and miserable. My GP is adamant that this has nothing to do with my thyroid as i'm getting "optimal treatment" and has done other blood tests which show that there is nothing else wrong with me. She keeps offering anti depressants which i refuse to take again, and now has told me that although she believes me about my symptoms there is nothing that can be done about it and I'll have to learn to live with it.

    My income is quite low and I'm on a medical card, but I will find the money if I could find someone to help me, who doesnt treat me like a hypochondriac or a fantasist. Can anyone advise me?

    You've probably done this already but just in case you haven't. When I want more information on something particularly something medical) I start with google. Find only the reliable websites.


  • #2


    While we're not allowed to give medical advice here, perhaps you could suggest to your GP that you'd like to try a small increase in medication to see if it helps you. Normally the recommendation is to get TSH below 4. You may have to use gentle persuasion on your GP, maybe suggest she humour you!
    Unfortunately, thyroid sufferers are often wrongly labelled malingerers/hypochondriacs.


  • #2


    Well last week, on the day I was feeling really really bad, I got the call from my doctor to say 'congratulations, your thyroid is in the normal ranger'. I asked her to send me a copy, the TSH had gone to 2.5 (from overactive) and T3 and T4 were within the limits. I have now done out a spreadsheet and the T3 is quite low at 4.1. Have to get my antibodies result but suspect they will still be high. The brain fog this week has been awful. With Hashis, will it continue to go over and underactive. My endo said once its regulated we can rule out the thyroid as the cause of my medical problems. This seems to imply there will be a perfect dosage and thats it

    PurrJones, did you manage to get someone to prescribe armour. Would be very interested to know how you find it. I would love to go down the natural route but will remain on conventional medicine until I start feeling better on a regular basis. I am going to a kinesologist on Friday and am on a gluten free diet for a week to see if I feel better (never in a million years did I think I would be able to do this diet but when you feel bad.....!)


  • #2


    . My TSH starting was 16 and it came down to 6 on this dosage. My GP says that this is borderline and therefore I dont need a higher dose of eltroxin.

    That's ridiculous. The "normal" TSH range in James hospital is 0.27 - 4.20 mU/L and in Tallaght (p57) its 0.4-4.

    You need to see a different doctor. It's ridiculous how doctors treat thyroid patients in this country. We get treated as lazy, depressed hypochondriacs whose own fault it is that we feel awful, and our weight gain, digestive problems, etc have nothing to do with a thyroid that is in "normal range". Unbelievable!
    tigerb wrote: »
    PurrJones, did you manage to get someone to prescribe armour. Would be very interested to know how you find it.


    Re the armour - I tried it, but it didn't do it for me, it was reformulated in 2009 and a lof of patients who swore by it previously have since switched. I now take Erfa (another natural one) and that works fine for me.


  • #2


    hi everyone,
    new to this so bear with me..I have just started 25mcg of Eltroxin a couple of days ago with a new doctor..I only got the bloodtests from a dermatologist who was checking my Rosacea..my TSH was 4.56 but I got my medical records from my last doc and I previously had a TSH this high but was told I was borderline and did not need treatment!! that was in 2004!! unfortunately I accepted this and put symptoms down to age/stress/etc cos I was too tired to question it... now I have researched it and am much better able to fight my corner.. I will be re-tested in 6 weeks and if Eltroxin does not work I will be going to an endo in Clane hosp. privately ( i have full medical card but feel 1/2 visits is money well spent on my health)..who does not need a letter of referal from GP cost €180 first and then €120 subsequent visits but will also take phone queries..a tip I got on how to find a good endo was to look at who international embassies recommend on their sites for their citizens to visit while in Ireland..


  • #2


    Hi was diagnosed with under-active thryroid about 8weeks ago after feeling like sh1t for about 6months..I already have an auto-immune condition also.(inflamitary bowel disease)

    I dont really understand it to be honest. Trying to research it at the min. Started on 50 eltroxin increased to 100 and have to have bloods done again in a month. Still waiting on this energy i'm supposed to be getting! Will i be on this for life or will the meds regulate this?

    I never heard about this condition till i was diagnosed!


  • #2


    I have been diagnosed with Hashimoto's. I started to gradually feel week and anxious if I hadn't eaten in a few hours (and I eat quite a lot). Often getting weak, irritable, snappy and trembly. Thought maybe I was developing diabetes so went to the gp for blood tests. Results were way underactive. He thought it was very unusual, the main reasons being I'm only 26, male and 10 1/2 stone - 6ft... nearly underweight! My weight never changes and I can't remember being anything else other than 10.5 stone. I'm pretty active, do a fair bit of jogging and walking.
    Had a few tests and an ultrasound, saw an endocrinologists 2 months ago, and two guys today (1st guy needed a second opinion so he went to get a concultant to see me).

    So they've put me on 100m of eltroxin and I'm to go back in Sept for review. I've had fuzzy head quite a bit and short term memory isn't great which is a bit of a disaster since I'm doing PhD research - often find it hard to concentrate. But other than that I don't feel all that bad hope it doesn't get any worse considering some folk seem to have had a lot more symptoms than myself. I've been asked do I feel any swelling or soreness in the thyroid, and I never had. But funny enough I took my 1st tablet about 2hrs ago and as I type now I can feel a weird lump in my throat coming on, especially when swallowing. Maybe just because it's in my head with the events of the day.


  • #2


    zippy - I'm surprised they put you on 100mcg straight away, I was started on 50, then took 100, got hypersymptoms fairly quickly (too much too soon), we went back down to 75 and then eventually up to 100. So if you feel at all strange, ring the consultant and see about starting on a lower dose to get your body adjusted to the hormones.


  • #2


    cltt97 wrote: »
    zippy - I'm surprised they put you on 100mcg straight away, I was started on 50, then took 100, got hypersymptoms fairly quickly (too much too soon), we went back down to 75 and then eventually up to 100. So if you feel at all strange, ring the consultant and see about starting on a lower dose to get your body adjusted to the hormones.

    Will do surely! Think it was because I was so waaay underactive. It's kind of strange, they were baffled because I was showing so few symptoms and yet my blood and ultrasound was showing it. They asked me question after question about lifestyle and whatnot, which I suppose is normal, but what kind of pissed me off is, they took all the info from me, but they didn't give me any back, i.e. how it might affect me since it hasn't really yet, how I might react to the thyroxine, different options, they never explained a thing... the endos that is. I think my GP is ok though, fair play - he called it straight away without me even showing symptoms.


  • #2


    zippy,

    That's very strange that you went from 50mcg to 100mcg. They should have brought you up to 75mcg for a couple of months at the very least, in order to lower the risk of you becoming hyperthyroid.


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