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thyroid misery

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Comments

  • #1172
    lovelystuff
    Closed Accounts Posts: 364 ✭✭lovelystuff


    This is a bit of a random post,but does anyone else think its a bit crazy that there are no thyroid support groups around? I know about thyroid sexy etc,but to be honest this thread is the only real support I have (and is much appreciated) :-)


  • #1173
    Wyldwood
    Registered Users Posts: 1,162 ✭✭✭Wyldwood


    I have to agree that with so many thyroid sufferers around a support group would be great. This thread has an amazing amount of information on it & is great for chatting to others in a similar situation. A big thanks to everyone who contributes, it helps to know you are not alone in the struggle.

    I'm due blood results next week.... not holding my breath for any great miracle.


  • #1174
    lovelystuff
    Closed Accounts Posts: 364 ✭✭lovelystuff


    I honestly don't think I would have gotten sorted out if it wasn't for all the wisdom and support on here. There seems to be support group for every other illness, so given how debilitating thyroid can be it seems mad. Maybe we could do our own some time :-)


  • #1175
    Amazingfun
    Registered Users Posts: 3,161 ✭✭✭Amazingfun


    There are a lot of groups on Facebook:

    https://www.facebook.com/groups/FTPOThyroid/

    https://www.facebook.com/groups/hashimotos411/

    And support groups for the AIP (Autoimmune Protocol)

    https://www.facebook.com/groups/Hashimotosgirlsgethealthy/

    https://www.facebook.com/groups/AIPforyouandme/

    And there are some fantastic bloggers like The Paleo Mom, Auto-immune Paleo, and many more:

    http://paleomagonline.com/introducing-the-paleo-autoimmune-bloggers/

    :)


  • #1176
    rok
    Registered Users Posts: 538 ✭✭✭rok


    Thanks to you all for the advice on this thread.
    I've read some of the first few pages and it gave me the push to insist on referral to an Endocronologist which has led to improvements in my health and my diagnosis as a coeliac.

    I was diagnosed with underactive thyroid in January 2008 and prescribed Eltroxin, initially on 50mg per day rising up to 125mg which I've been on for the past 3 years.
    I felt the Eltroxin wasn't working well for me and read here about links with other auto immune diseases so 18 months ago I pushed my GP for referral to an Endocronologist.

    The Endocronologist reviewed my bloods, sent me for an ultrasound of my thyroid and she told me I had hashimoto's thyroiditis.
    If I understand correctly Hashimoto's thyroiditis means I have an underactive thyroid hypothyroidism with bouts of over active hyperthyroidism?

    At the Endocronologist visit I mentioned my coeliac symptoms so she referred me to a Gastroenterologist and following a gastroscopy I was diagnosed with coeliac disease about 1 year ago.
    I feel much better since starting the GF diet, my coeliac symptoms have greatly reduced, my energy levels have improved and I've also lost weight much easier than previously.

    I don't have all my historical blood results to hand but I think my initial TSH result was 12 in 2008, then reduced to 4.61 after 6 months of Eltroxin.

    My recent blood results are T4 = 14.8 and TSH= 0.07
    so I asked my GP if my Eltroxin dosage should be reduced, she said to continue on 125 per day and we'd review it in 3 months.

    I haven't read all the posts but just wondering if people have had Eltroxin dosage reduced after going on GF diet/change in TSH?


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  • #1177
    Orla K
    Registered Users Posts: 2,462 ✭✭✭Orla K


    I know some of you were having problems with efra, I found this which might be of interest, if you haven't all ready seen it.
    LATEST FROM DR. KNAFO OF ERFA as revealed by thyroid patient Elaine:

    OK here’s the low down on the situation. All is well. There is not going to be an end to Erfa thyroid at least not in the foreseeable future. Hurray!

    The reason for the problems with 30 and 60mgs tablets:

    1-Over the last many months the demand for the Erfa NDT has increased to 3 times what was expected (!).

    2-At the same time, they made a change in manufacturer – had to switch to a new facility in Spain and this took some time to get production ramped up to full capacity.

    NOTE: according to Dr. Knafo all ingredients are unchanged, production standards have been maintained and therefore the quality is the same. (I hope so!)

    All pills are made at the new facility in Spain. They are shipped to Canada and then distributed from here to Canadian pharmacies and all international destinations.

    For international customers – those in US and Europe, ordering can be done on-line with a doctor’s prescription. Erfa was originally doing its own distribution through the on-line site: “Pharmasourcing” but with increased numbers of patients especially in the US, they have now sub-contracted that service to an established on-line pharmacy that has the experience and full infrastructure in place for taking orders and doing the shipping. This is in place and functioning well apparently.


  • #1178
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    rok wrote: »
    If I understand correctly Hashimoto's thyroiditis means I have an underactive thyroid hypothyroidism with bouts of over active hyperthyroidism?
    My recent blood results are T4 = 14.8 and TSH= 0.07
    so I asked my GP if my Eltroxin dosage should be reduced

    Hashimoto's means you have autoimmune thyroiditis, and whilst sometimes people can go overactive, it is principally an underactive condition. The overactive counterpart typically is Graves.

    I think with a TSh of 0.07, if you feel ok - which you seem to, and you're losing weight and having more energy I wouldn't change anything. The normal range is 0.4 - 4, a lot of people with Hashimotos feel better on a lower TSH, but don't go by the figures, go by how you feel. It also takes considerable amount of time for the body to get used to a dose and to properly respond, so don't rush into increases in doses, be patient and give it sufficient time.


  • #1179
    Wyldwood
    Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Well I got my blood results back and, no surprise, they are out of whack:

    TSH 10.07 (0.04-3.8)
    FT4 13.6 (10-22)

    no FT3 tested this time as I forgot to remind GP to do it.

    I'm still taking just 12.5mcg daily but doctor has asked me to try to add an additional 12.5 per week so will give that a go and see what happens. Overall I don't feel too bad most of the time. Still get off days but not as many as before. I had changed to taking the meds at night as that is supposed to improve absorption, unfortunately doesn't seemed to have worked.

    The biggest issue is that my cholesterol has jumped from a healthy 4.8 to 6.4 over the last three years since all this madness started. Doctor suggested statins but I declined for the moment as I don't want to add any more medication into my wonky system. Hoping that I can get it down when & if this thyroid thing improves.

    Only other result that was off was Folate which measured >20 (3.1-20)

    Hope everyone else is feeling well.


  • #1180
    Wyldwood
    Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Mods I hope it's ok to post this link here

    http://www.thyrophoenix.com/adjusting_doses.htm (you might have to copy and paste URL)

    I came across this blog and thought it was a very simple explanation of what happens when we try to increase dosage too quickly. I hope it helps those of us struggling and especially any newbie diagnosed thyroid sufferers.


  • #1181
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    Wyldwood wrote: »
    Mods I hope it's ok to post this link here

    http://www.thyrophoenix.com/adjusting_doses.htm (you might have to copy and paste URL)

    I came across this blog and thought it was a very simple explanation of what happens when we try to increase dosage too quickly. I hope it helps those of us struggling and especially any newbie diagnosed thyroid sufferers.


    Brilliant, every newbie should read this!


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  • #1182
    Amazingfun
    Registered Users Posts: 3,161 ✭✭✭Amazingfun


    Do any of you know where to get a mercury thermometer in Dublin?


  • #1183
    Wyldwood
    Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Amazingfun, the sale of mercury thermometers was banned by the EU as far as I know.


  • #1184
    mistress_gi
    Registered Users Posts: 963 ✭✭✭mistress_gi


    Am I glad I found this thread.
    I was diagnosed with Hashimotos thyroid 2 years ago.
    I am taking eltroxin (75mg) daily; I have been good since I started my medication apart from 2 issues.
    I seem to never get enough sleep, twitch and move every 10 secs according to my husband and today I woke up for no reason and couldn't get back to sleep. This means that I am tired all the time.
    I have also to only be able to focus on one thing at a time, like if I am working all I think about and talk about is work, etc...
    Anyone else have these symptoms, and do you have any tips to get them under control?
    Thanks in advance!


  • #1185
    Amazingfun
    Registered Users Posts: 3,161 ✭✭✭Amazingfun


    Wyldwood wrote: »
    Amazingfun, the sale of mercury thermometers was banned by the EU as far as I know.

    Yeah, thanks, I see some for sale on Ebay but they cost a fortune.

    My mother still has one I think, I'll have to nic it off her next time I'm down for a visit , lol ;)


  • #1186
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    mistress_gi wrote: »
    Am I glad I found this thread.
    I was diagnosed with Hashimotos thyroid 2 years ago.
    I am taking eltroxin (75mg) daily; I have been good since I started my medication apart from 2 issues.
    I seem to never get enough sleep, twitch and move every 10 secs according to my husband and today I woke up for no reason and couldn't get back to sleep. This means that I am tired all the time.
    I have also to only be able to focus on one thing at a time, like if I am working all I think about and talk about is work, etc...
    Anyone else have these symptoms, and do you have any tips to get them under control?
    Thanks in advance!

    Have you at any stage had your cortisol levels tested?


  • #1187
    mistress_gi
    Registered Users Posts: 963 ✭✭✭mistress_gi


    cltt97 wrote: »
    Have you at any stage had your cortisol levels tested?

    No I don't think so. My plan is to go to the gp next week and discuss the possibility of b3ing refered to en endocrinologist. I think I may be able to get better advice there since I've only ever been to the gp.


  • #1188
    Amazingfun
    Registered Users Posts: 3,161 ✭✭✭Amazingfun


    mistress_gi wrote: »
    No I don't think so. My plan is to go to the gp next week and discuss the possibility of b3ing refered to en endocrinologist. I think I may be able to get better advice there since I've only ever been to the gp.

    Not too put a damper on you, but I've heard many a frustrating tale of people's experiences with endos. I think we have to be our own advocates, but of course, you may get lucky with one who really understands us--good luck.


  • #1189
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    My personal experience with adrenal fatigue was that my mind was racing like no tomorrow and I got stressed really easily and I had troubles sleeping as well. And I had very bad reaction to the thyroid meds. I went on low dose hydrocortisone and the effects were massive. I have since also switched to natural thyroid and I am following the circadian method for taking T3, my cortisone levels are the highest I've ever had since and I'm hoping to come off the HC, since my body seems to be well able to produce it now.


  • #1190
    cyning
    Registered Users Posts: 3,251 ✭✭✭cyning


    I have to start taking iron which is a disaster for me... Last time I needed it thyroid went totally out of whack! I need to take it twice a day so when do people take it in relation to their eltroxin?


  • #1191
    Wyldwood
    Registered Users Posts: 1,162 ✭✭✭Wyldwood


    Cyning, the recommendation is to allow 4 hours between thyroid meds and iron/calcium supplements. If you have to take it twice a day I guess around lunch and evening would work.

    I also hate taking iron so hope it doesn't affect you too much.


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  • #1192
    cyning
    Registered Users Posts: 3,251 ✭✭✭cyning


    Fingers crossed I know last time my TSH more than tripled in 3 weeks to 36ish. Hopefully will only need it for 6/8 weeks and it doesn't make my thyroid worse :)


  • #1193
    Staplor
    Registered Users Posts: 1,119 ✭✭✭Staplor


    Hi guys, just a quick tip, I was getting Armour tablets at my local chemist, the cost of a single month was halved when I switched to Boots. Apparently they charge cost price + €7. So it might be worth calling them to see what any high cost meds would be from them. I only realised how much I was spending when I was getting my returns ready for tax back.


  • #1194
    MistySky
    Registered Users Posts: 37 ✭MistySky


    @ mistress_gi - I would very strongly support the recommendations about finding yourself a good endocrinologist. From my experience (I'm sure others may have different stories) GPs tend to rely on a limited set of thyroid tests to diagnose and treat hypothryoidism and the medicine of choice is Eltroxin. However while Eltroxin is effective in many many cases, it doesn't suit some people, or isn't effective on its own.

    I was taking Eltroxin for almost a year without any improvement - in fact I felt that my symptoms deteriorated and it also impacted my moods (I felt quite depressed and anxious).

    Eventually I decided to ask for a referral to see an endocrinologist. But much to my disappointment the guy I went to see made me feel like it was all in my head. After reviewing my lab tests he said he wouldn't change my treatment and recommend continuing with the Eltroxin.

    I persisted and did some further research and came across an excellent endo. She did a number of additional thyroid tests, as well as testing my adrenal glands (cortisol). It turns out my body has issues converting T4 to T3. I'm now on a combination of Eltroxin (T4) and Thybon (synthetic T3) and I feel like my old self again. It has taken a long time to get the mix / dosage right, but it's really been worth it!

    In my opinion you might be better off finding a good endocrinologist yourself (I'm happy to recommend mine if you're around Dublin/Leinster) rather than going with the person your GP refers you to.


    @ cyning - have you tried taking Spatone - much easier on the digestive system than the alternatives!


  • #1195
    cyning
    Registered Users Posts: 3,251 ✭✭✭cyning


    I'm just 35 weeks pregnant so need my iron levels up ASAP this is the gentler option than Galfer! Otherwise spatone would be ideal :) it is pretty harsh makes me feel so sick


  • #1196
    lovelystuff
    Closed Accounts Posts: 364 ✭✭lovelystuff


    MistySky wrote: »
    @ mistress_gi
    I persisted and did some further research and came across an excellent endo. She did a number of additional thyroid tests, as well as testing my adren3al glands (cortisol). It turns out my body has issues converting T4 to T3. I'm now on a combination of Eltroxin (T4) and Thybon (synthetic T3) and I feel like my old self again. It has taken a long time to get the mix / dosage right, but it's really been worth it!

    In my opinion you might be better off finding a good endocrinologist yourself (I'm happy to recommend mine if you're around Dublin/Leinster) rather than going with the person your GP refers you to.


    @ cyning - have you tried taking Spatone - much easier on the digestive system than the alternatives!

    Would you mind sharing the name of your endo? Thanks :-)


  • #1197
    MistySky
    Registered Users Posts: 37 ✭MistySky


    I wasn't sure if I was allowed to recommend someone by name on here....but here goes....

    My endo is Dr Margaret Griffin - she works in Clane hospital in Kildare and The Beacon in Dublin. Used to do the Bons Secours in Dublin too but I'm not sure if she's there anymore.

    Best of luck!


  • #1198
    lovelystuff
    Closed Accounts Posts: 364 ✭✭lovelystuff


    MistySky wrote: »
    I wasn't sure if I was allowed to recommend someone by name on here....but here goes....

    My endo is Dr Margaret Griffin - she works in Clane hospital in Kildare and The Beacon in Dublin. Used to do the Bons Secours in Dublin too but I'm not sure if she's there anymore.

    Best of luck!

    Thanks so much,my experience has been very hit and miss so I'll contact her :-)thanks again


  • #1199
    mistress_gi
    Registered Users Posts: 963 ✭✭✭mistress_gi


    MistySky
    Thank you for the info. I will try and see what the endo is like on the HSE, got referred this week. If it does not work out then I will start exploring other options, starting with your doctor!


  • #1200
    Rosie1983
    Registered Users Posts: 40 ✭Rosie1983


    Hi all

    I should really be fast asleep in bed but I'm a terrible night owl. A really bad habit that's not doing my energy levels any good! Anyway I've been meaning to come back on and ask is anyone else on Erfa? I ran out of my supply at the end of October, had a week long panic when they told me they didn't know when it would be back in stock. I couldn't get my Endo on the phone to send the chemist a new prescription for Armour to tide me over and my GP had never heard of either of them and wouldn't prescribe it for me until she'd spoken to him in case she poisoned me and I sued her!! ����. Her words not mine!!

    Anyway I've been on armour since then and even though I feel ok and my bloods are much better than they were 9or 10 months ago when I first started on Erfa, I feel like I want to go back onto Erfa. Just my gut, but I felt it suited me better, maybe I just don't trust American drug companies.

    I rang my chemist back today which I was supposed to a few weeks ago to see if Erfa was back in stock and it is apparently and they've ordered bottle of 100 in for me for next week. I just need to get my Endo to fax the a new prescription cos The old one is probably out of date by now.

    Has anyone been on Erfa and Armour and do you have a preference?? Any info is always greatly appreciated! Just moved into a house. Wish I could get a proper reverse osmosis filter installed in the kitchen but we are only renting so doubt it's an option. Will have to stick to Evian although I hate buying bottled water... Need to start taking my vitamins again and get everything tested again soon...


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  • #1201
    cltt97
    Registered Users Posts: 735 ✭✭✭cltt97


    Rosie, I have tried both and I've been on Armour for about a months or so now due to the ERFA shortage. I don't think I noticed too much of a difference, but had my bloods taken last week so will see if there is any difference. I know a lot of people much prefer ERFA and feel better on it due to the fillers used. Armour used to be like ERFA but then they switched to different fillers, in particular microcrystalline cellulose if I remember correctly (so don't take my word for it), which is why it is a bit harder and doesn't dissolve as easily under the tongue and it also doesn't taste as sweet as ERFA. A lot of people think that they cannot absorb Armour as easily as ERFA due to these fillers. Many suggested that crushing armour first and adding a bit of honey helps them absorbing it better. Personally I think the most impact I have had was adding T3 to the ERFA and taking it at 4am - to help the adrenals, this has worked really well for me and I've overall been feeling really well for a good while now.


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