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thyroid misery

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  • Registered Users Posts: 80 ✭✭LimerickBishop


    That's great tigerb. Hope it serves you well. I haven't needed to do it recently since I've found the energy to increase my exercise intensity, so I'm falling soundly asleep once I've hopped into bed, waking up refreshed and feeling much better.

    Regarding hunger, its really difficult, all I can say is keep fatty snacks away and surround yourself with fruit and certain types of nuts. Pineapple and brazil nuts (not more than 6 whole nuts) seem to work well with me. Sometimes I embrace hunger, and say to myself I know I'm hungry, but this is a battle of wits and I'm gonna win, not the hunger pangs. The more victories I have, the less frequent the hunger pangs arrive.

    Best of luck.


  • Registered Users Posts: 735 ✭✭✭cltt97


    tigerb wrote: »
    My doc rang to say TSH at 1.5 so they didnt do T3 and T4

    That's diabolical! You should try and get those results. Where are you based?

    Re your adrenals - there's a book by J.Wilson "Adrenal Fatigue" the 21st century stress syndrome. It's very good, explains the whole issue really well and gives good advice on how to help yourself if you have weak adrenals - sound advice such as avoid coffee, tea, alcohol, eat regularly, go to bed early, avoid stress, etc, etc, but also explores options such as supplementing with hydrocortisone or taking liquorice root. Overall, very balanced and informative without pushing any particular route.
    Good few people on this forum are on hydrocortisone - most of them did adrenal saliva tests first though.
    What works quite well for me is to add a bit of salt to drinking water - I find it easier to drink and helps if you electrolytes are a bit out of balance.

    My antibodies fluctuate quite a bit, too. And the general opinion is that it's not important how high or low your antibody count is, but intuitively I think it's better to have a low count. There is a lot of scientific evidence that shows that taking 200ug of selenium a day reduces your antibody count considerably - it also helps with conversion of T4 to T3. I did notice that I felt better when taking selenium. If you don't want to take supplements, you can eat brazil nuts (as suggested by Limerick Bishop). They're full of selenium, but also full of radium, so I wouldn't be eating too many of those either.


  • Registered Users Posts: 23 Shellieh


    Hey

    Got my results from the blood tests. The doc has upped the doeage to 100mg a day. Starting to feel better already repeat bloods in 6 weeks. So fingers crossed things will be good between now and then. :p


  • Registered Users Posts: 735 ✭✭✭cltt97


    That's great Shellieh, glad to hear you're on the up.


  • Registered Users Posts: 22 tigerb


    Yes great news Shellieh, hope you have arrived at correct dose.

    Have to say at a TSH of 1.5 I am feeling good this week.

    Shame they dont have a instrument which would give us a recording of our thyroid results so we could adjust the thyroxine ourselves instead of going to the docs for blood tests.


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  • Registered Users Posts: 127 ✭✭hgm


    Hi i hope you dont mind me joining in. I was diagnosed with an under active thyroid yesterday by my Gp. I dont know the exact results as i didn't think to ask for them. She told me she wants to wait for another 4 weeks and re test my bloods again before beginning medication but i'm not sure i will last that long feeling like this. Like you all i have extreme exhaustion,body aches,fatigue,weight gain,major brain fog to the extent i'm scared to drive the children to school anymore.I would be driving then my mind completely wanders and then i come back.I just wanted to know if this is how other GP's treat under active thyroid at first until they have 2nd blood test? I also have very low b12 and lipids in my liver. I got the b12 injection and i'm due back next week for a 2nd one so just wanted to get opinions before i go back.Any advice would be great as i'm overwhelmed at the moment.Thanks!


  • Registered Users Posts: 80 ✭✭LimerickBishop


    hgm,

    Welcome to the club. Its disgraceful carry on. You must get in touch with your GP tomorrow and demand the prescription for eltroxin. Threaten your GP with legal action if she refuses, or get a print out of your results and approach another GP with the results.

    Prepare yourself for a long battle, but believe in yourself and believe you'll feel better again.

    I'm 18 months into my treatment, I haven't felt this well in a long time, I'm down from 102KG to 85KG, just need to push on to 80KG and I'll be in great shape. I've got the energy to jog 10km most days, never thought I'd be doing this 18 months ago when I went for a short walk and couldn't figure out why my body was in agony.

    Take some positives, you've found a diagnosis, you know what's wrong, so just go about fixing it. If you tell us what region you live in, one of us might be able to recommend a good GP for you if you get no satisfaction from your current GP.

    Best of luck.


  • Registered Users Posts: 735 ✭✭✭cltt97


    Yes, I totally agree with Limerick bishop! it's a total waste of time to wait for another 4 weeks, if anything the situation will only get worse. You should go back and demand that she put you on 50mcg Eltroxin, which is the usual starter dose, and you should ask to be sent back for blood tests to see if you have antibodies. Also if you're B12 deficient - did they also check your iron and Folate status? You must be in a right state with all this going on.... Have they diagnosed you with pernicious anemia? (This is when you're missing the intrinsic factor which is needed for B12 absorption). Or are you possibly coeliac, in which case you might be deficient in a lot of other things if that is the cause of your B12 deficiency. So you should be tested for all these things. This GP clearly has little idea about thyroid disorders!
    In any case, let us know where you are.


  • Registered Users Posts: 22 tigerb


    hgm, you poor thing. Definately go back to your doc and get full thyroid tests. I know what you mean about the driving. Brain fog is awful and I used to be full of anxiety on the school runs. Hope you get it sorted when you go on the eltroxin.


  • Registered Users Posts: 127 ✭✭hgm


    Hi thanks so much for your replies. Yes i got ferritin,b12,tft,thyroid abs,liver,folate and a few others checked. The results came back as very low b12 which i knew anyway as i have suffered before with that, but she said thyroid was underactive and said if the next blood sample was same she would then start me on eltroxin.But i really dont think i can wait 4-6 wks.She did mention about pernicious anemia but i think she said she will test me for that next time? I feel so lost now,although it is good to finally know there is something going on and i'm not just lazy i just feel like she did'nt listen to me. I will say it to her on Tuesday.I can barely function at this stage and my 3 children need me at my best.:mad:Thanks again!


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  • Registered Users Posts: 735 ✭✭✭cltt97


    I would ring and get them to print your test results and I would go to a different GP with them. It's appaling how you've been treated!


  • Registered Users Posts: 4 M.A.S.H.


    hi i would see ur doc again asap and say u need to be treated sooner because u cant function at all and are in fear of something dangerous happening on school run...keep persisting..if not go to a different gp..i found that when i wrote symptoms down and handed them to gp she started me on 25mg....good luck!!


  • Registered Users Posts: 127 ✭✭hgm


    Thanks! I rang the clinic and made an appointment to see her on Tuesday when i'm getting my b12 injections. I'm not leaving until she gives me something. God it's terrible that you have to spell it out for them is'nt it?!!
    Thanks to you all, at least i don't feel like i'm overreacting now.;)


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Has anybody got experience of moving from underactive thyroid to overactive thyroid? My weightloss has accelerated, down to 84KG now, and feel like I'm 21 again, and I'm doing my almost daily 10km jog in less and less time - basically I don't feel like I'm suffering anymore from the condition, even though I know I'm on these meds for life. Am I just getting fitter and better at losing weight or am I in danger of going overactive? Would 125 microgram dosage have a different effect on someone who was 90KG and then a few weeks later was down to 84KG? Should I get blood test done now less than 2 months after the last one, or wait another month as advised by GP last time?


  • Registered Users Posts: 22 tigerb


    Has anybody got experience of moving from underactive thyroid to overactive thyroid? My weightloss has accelerated, down to 84KG now, and feel like I'm 21 again, and I'm doing my almost daily 10km jog in less and less time - basically I don't feel like I'm suffering anymore from the condition, even though I know I'm on these meds for life. Am I just getting fitter and better at losing weight or am I in danger of going overactive? Would 125 microgram dosage have a different effect on someone who was 90KG and then a few weeks later was down to 84KG? Should I get blood test done now less than 2 months after the last one, or wait another month as advised by GP last time?

    Delighted for you Limerick Bishop. Its great you feel wonderful. If I were you I would get the bloods checked and find out the TSH and keep it at that number. There was a post where a few on the boards know the exact TSH which made them feel good and if I recall many were at the low end of the normal TSH range.

    Also you do the yoga, have a great diet and are doing all the right things to alleviate the symptoms. I wish I had more self control

    Re losing weight, I have hashis and have never had a weight problem. I am 5'8 and never go over 10.5 stone.


  • Registered Users Posts: 127 ✭✭hgm


    Hi all. Just thought i would pop by and let you know i went back to my GP today and she still did'nt give me any meds for my thyroid.:mad:
    She said i was 6.5 so she wanted to see if my b12 deficiency was causing it rather than starting meds straight away. Im fuming to say the least but as i am a medical card holder and only recently joined this clinic my options are limited. Can anyone tell me what 6.5 means? Is it just borderline and perhaps that is why she does not see the need for meds yet? My b12 was 110 and she said it should be in or around 160 to be normal so maybe thats why she thinks a few weeks getting the b12 injections may do the trick? Im none the wiser than when i went in.:o


  • Registered Users Posts: 18 conspiracyinc


    I'm not as well up on the ins and outs as a lot of other forum members, but I was refused a higher dosage of eltroxin by my gp at a tsh of 6 - she said that this was borderline and didnt require any further treatment.Also that my symptoms had nothing at all to do with my thyroid. :mad:
    I made an appt to see an endo myself, she advised that my TSH should be between 1-2 for a start, and if symptoms don't go then investigate further. I've only been increased by 25mg but the difference in how I feel is incredible after only 3 weeks. I feel very angry towards my gp for her attitude towards me, and it seems that a lot of people have this experience.
    By the way, I also am on medical card, it wasnt easy to find the money to go to a private endo but if it means an end to the misery I was putting up with its money well spent.


  • Registered Users Posts: 127 ✭✭hgm


    Thanks for your reply.Would you mind sending me a pm with details on where and who i could go to privately and also how much roughly it would cost? I would pay to get to the bottom of this once and for all tbh. ;)


  • Registered Users Posts: 735 ✭✭✭cltt97


    hgm, where are you based? I have a lovely endo, he charges 200 for the first visit and then 180 thereafter. this gp is a joke to be honest. 6.5 most likely refers to your TSH. The normal range is somewhere between 0.4 and 4, and a lot of people with Hashimotos feel better at the lower end of this range. It is also not a very useful piece of information without knowing what your free T4 and free T3 levels are like.
    When I was first diagnosed in 2007 I was >100, but then realised that a test ordered by a GP in 2005 showed a level of 5. That transpired when the endocrinologist in James Hopsital told me, as he had access to all the blood test ever done on me. I didn't even know I had that test done - I would have saved myself so much hassle and physical symptoms if it had been caught that early on.

    To Limerick Bishop: Do you get any hyper-symptoms at all? Such as increased heart rate/pulse, dizziness, hyperventilation or anything else weird? If not I'd just say count yourself lucky and long may it last!


  • Registered Users Posts: 80 ✭✭LimerickBishop


    hi cltt97,

    No, I don't have any of those symptoms, so I reckon I haven't crossed over to the dark side. I had a blood test done on Tuesday, so I'll update my results here when I get them. My weightloss has been a little bit of a false dawn, I'm back up to 85KG again, but I do feel good and I'm sleeping much better - very little insomnia.

    I'm going mad with hunger in the evenings, I eat some fruit but I'm hungry again in about 20 mins. I eat a full dinner around 6:30pm, so I think my brain is receiving false hunger messages from my stomach, it would be great if there was a pill I could take to eliminate false hunger.

    I've also discovered pistachio nuts are high in calories so I'm cutting them out now. I'd love to hear suggestions of successful ways people deal with false hunger sensations.


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  • Registered Users Posts: 735 ✭✭✭cltt97


    I don't think I've ever suffered from false hunger sensations, but maybe your blood-sugar is fluctuating and is going low and hence the hunger pangs. What do you usually eat for dinner? Maybe try some evening to have something like brown rice, or something with a very low glycaemic index?


  • Registered Users Posts: 127 ✭✭hgm


    Hi. I've no where else to rant so thought i would do it here.:o
    I have had a good weekend and felt pretty normal for once so i thought maybe the b12 injections were kicking in and that would be the end to this nightmare. Then this morning i woke crippled in pain and tiredness. I have been emotional all day because i cant do or focus on anything. It really is the worse i have felt yet. I just rang my gp to make an appointment for the morning but she is away on holiday for the next 2 weeks!!!:mad::mad::mad:
    I think at this stage i really do need to go private and get this sorted.I cant go on like this any longer. Conspiracyinc was very kind to mail me her endo's details. I would be delighted to hear from any one else in the Dublin region who can recommend an Endo asap.
    Sorry for the rant i'm just so miserable and i need to get to the root of it once and for all. Thanks for listening.;)


  • Closed Accounts Posts: 23 jimmydec


    lot of common sense in this thread but also a lot of hysterical nonsense. Just because you have a thyroid problem doesnt mean that you cant be depressed /anxious/stressed as well. Changing a dose of thyroid meds is not the answer to everything .


  • Registered Users Posts: 127 ✭✭hgm


    jimmydec wrote: »
    lot of common sense in this thread but also a lot of hysterical nonsense. Just because you have a thyroid problem doesnt mean that you cant be depressed /anxious/stressed as well. Changing a dose of thyroid meds is not the answer to everything .

    Is that aimed at me Jimmydec or in general? :confused:

    I take it you suffer from the above and have personal experience so?!


  • Registered Users Posts: 735 ✭✭✭cltt97


    Well my personal well being is very much dependent on the correct dose and correct treatment and I speak from first hand experience. I've experienced anything from being extremely lethargic and indifferent to shaking so badly that the hospital couldn't take an ECG - all thyroid related. And yes, I agree, (only or just) changing the dose of thyroid meds is not the answer to everything, because it is way more complex than that. I wish the doctors in this country would recognise this, too. Anyways, hgm, I sent you a pm with my endo's details. Although, would you consider asking your GP to print out the lab results (assuming there is someone in the surgery while she is away) and go to a different one? My experience is that even if you pay for them, consultant appointments are not easy to get quickly.


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Jimmydec,

    I think we come to this thread to share our experiences and to learn how to better manage our conditions. We all want to feel as well as possible, so sharing tips, knowledge and information can only be a good thing.

    Speaking for myself, I want to get back to be the person I was 10 years ago before I reckon I started suffering from Hypothyroidism. I don't expect to become a different person as happy as say Jedward. I quite liked myself 10 years ago and had lots of things going for me. Somedays are better than others and somedays I feel frustrated having this condition. I keep an open mind about things that might make me feel better. I'm not gonna say to myself for example, once my TSH is down to 2.0 I'll be sorted. I hope to get down to that level, but I'm also gonna explore the other levels like T3 and T4, and hope to find levels that suits me most.


  • Registered Users Posts: 80 ✭✭LimerickBishop


    Here's my latest 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 4.18. Kept on 125mcg of Eltroxin. 89KG
    Blood Test JUL '11 TSH of 2.40. Kept on 125mcg of Eltroxin. 84KG

    Just to add that my Free T4 is now 19.4, and that's just within the correct band of 9.9 - 20.1. I had a feeling the TSH had dropped into the normal range, but I was delighted it fell all the way down to 2.40. The feeling of wellbeing is priceless. I hope to get down to 80KG, that's my long term target, but I hope to get there within a few weeks. All other tests for Sodium, Potassium, Urea, Creatinine, Billirubin, Alkaline phosphatase, Gamma-glutamyl transferase and ALT came in normal too.

    It hasn't been easy getting to this level, but if I can do it you can too. Stay away from all stimulants, get active, eat wholesome food in small quantities and you'll feel better.


  • Registered Users Posts: 22 tigerb


    That is fantastic news Limerick Bishop. As your TSH is continuously going down will you reduce your eltroxin if it goes too low. I am also feeling good and as you say its priceless. Any news from hgm. Hope you got a good endo.


  • Registered Users Posts: 1,162 ✭✭✭Wyldwood


    It's good to know that people are getting their thyroid stable. After years of being stable at TSH 2 - 2.5 on Eltroxin 100 I went hyper earlier this year with TSH 0.11 T4 21.9 and can't get it under control. Eltroxin reduced to 75/100 alternate days brought TSH to 0.17 T4 19 after 8 weeks. Eltroxin reduced to 75 daily & due for more bloods next week but feeling awful a lot of the time with palps, shakes etc., am despairing that I'll never feel right again.


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  • Registered Users Posts: 80 ✭✭LimerickBishop


    Hi Wyldwood,

    That's a very sobering post, it just goes to show you have to remain vigilant about the thyroid even if you're feeling well for years. I certainly don't want to go hyperthyroid since it would seem to be very problematic, and difficult to return to normal levels.

    Hi tigerb,

    Yeah, next blood tests will be at the end of September. I've a cold at the moment so I don't want to exercise, and I hope my weight doesn't go back up as a result. I'm eating fish 5 days a week, and I think a fishy diet suits me very well. I also seem to have a problem with my sinuses and I'd really like to get that cleared up....just wondering is this common with being hypothyroid?


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