thyroid misery

Sapphire3

Thanks for your reply LovelyStuff!
It's not so much the armour that I want, but a correct, thorough check up and to be monitored properly, so Dr. Griffin sounds like the sort of endocrinologist, that I would want to see. I am going to have to wait until after Christmas before I can go and see the GP (They are all booked up now) Hopefully he will give me a referral letter to go and see her. Fingers crossed!

Wyldwood

A quick post to wish all fellow thyroid sufferers a very happy Christmas and hope everyone has a very healthy 2015.

RoadhouseBlues

Same to you Wyldwood and everyone else. Have a great one folks.

lovelystuff

Thanks everyone for your support and wisdom this year, and have a wonderful Christmas and New year!

Sapphire3

Same to you Wyldwood..Merry Christmas to you all, and a very Happy 2015!

Wyldwood

Anybody else finding it hard to get Eltroxin 25mcg?

My pharmacist scraped together 4 tablets for me today to get me through the weekend and told me that it was likely there would be a long-term shortage due to the fact that the cost of medicines has reduced here and it's not worth their while exporting from UK. Don't know how true this is but it's going to create a major problem as I was very unwell when I tried to take a generic before.
He offered me a levo 25 made by Wockhardt and told me it was identical to the MercuryPhrma Eltroxin and made by the same company but reading the data online it would appear they are different companies.

Not a great start to 2015.

echo beach

Wyldwood wrote: »

Anybody else finding it hard to get Eltroxin 25mcg?

My pharmacist scraped together 4 tablets for me today to get me through the weekend and told me that it was likely there would be a long-term shortage due to the fact that the cost of medicines has reduced here and it's not worth their while exporting from UK. Don't know how true this is but it's going to create a major problem as I was very unwell when I tried to take a generic before.
He offered me a levo 25 made by Wockhardt and told me it was identical to the MercuryPhrma Eltroxin and made by the same company but reading the data online it would appear they are different companies.

Not a great start to 2015.

It is an ongoing problem with all strengths of Eltroxin and many other drugs. http://www.irishtimes.com/news/health/inquiry-into-whether-medicines-were-exported-from-ireland-for-better-prices-1.2050771

It is usually pretty difficult to know who makes a drug. Wockhardt manufacture under their own name and also supply to other companies for repackaging under various brand names. Mercury, who were formally called Goldshield, hold the product authorisation which allows them to sell the product in Ireland but the manufacturer is given as Custom Pharmaceuticals.

gastons

Has anyone successfully applied for disability allowance? I have been advised to apply for this (currently in receipt of JSA). I have UAT diagnosis since November 2014. I am still trying to get my TSH levels down. I was also diagnosed with a low ejection pump of my heart after a recent stay in hospital. I am being started on a tablet for the heart tomorrow. I am also on a blood pressure tablet and painkillers. The painkillers are needed to help me get through the day. I didn't take any pain killers yesterday, and today I have woke up exhausted and in sever pain, my limbs hurt, my head hurts, my eyes hurt. I'm due bloods for my levels in 3 weeks. My TSH when diagnosed was 87.6 so I have a long road ahead still. I had a look at the Disability application forms and I'm not sure if I would be eligible for it. What I do know is, at the moment I am unable to work. Thanks

Edited to add, I have been advised to apply for disability by family members. Not by a professional or a doctor.

jozi

Had an appointment in the hospital recently about my thyroid nodules. The specialist didn't think my bloods were out of the ordinary or in need of meds. Have to go back in 2 weeks for them to take some samples of the nodules, should I be worried about the procedure?

RubyGirl

gastons wrote: »

Has anyone successfully applied for disability allowance? I have been advised to apply for this (currently in receipt of JSA). I have UAT diagnosis since November 2014. I am still trying to get my TSH levels down. I was also diagnosed with a low ejection pump of my heart after a recent stay in hospital. I am being started on a tablet for the heart tomorrow. I am also on a blood pressure tablet and painkillers. The painkillers are needed to help me get through the day. I didn't take any pain killers yesterday, and today I have woke up exhausted and in sever pain, my limbs hurt, my head hurts, my eyes hurt. I'm due bloods for my levels in 3 weeks. My TSH when diagnosed was 87.6 so I have a long road ahead still. I had a look at the Disability application forms and I'm not sure if I would be eligible for it. What I do know is, at the moment I am unable to work. Thanks

Edited to add, I have been advised to apply for disability by family
members. Not by a professional or a doctor.

I would think you should be entitled to illness benefit, if you currently can't work. You get weekly cert's from your doctor & send them to Dublin. Next time your at the doctor ask her for an illness benefit cert & a form to fill out.

http://www.welfare.ie/en/Pages/345_Illness-Benefit.aspx#ld1a9a

RANIA

anyone in west on armour or t3.interested to find a gp willing.thanks

samphire24

Hello All,

This is my first post on boards so be gentle with me! What a wealth of information here. I don't know for certain yet if I have an underactive thyroid - doctors have done T4 and TSH tests but said they were fine. I have asked for T3 test the next round. Just wondering if anyone here has problems with their adrenals too? From the research I have done into my own symptoms I have come to believe that I may have "adrenal fatigue". I know many doctors do not acknowledge it as a condition but reading the symptoms reads like my life story - brain fog, extreme fatigue, anxiety, listlessness as well as a myriad of abdominal problems such as constipation, diarrhoea (a new development!)and an intolerance to alcohol and certain foods. Anyone else suffer similar symptoms? I hope this wasn't too graphic for the thread. I see much of the discussion is about hormone therapy - has anyone tried alternative therapies and have they they worked?
Many thanks for your time.

Wyldwood

Samphire24, welcome to the thread.

A lot of thyroid patients also suffer from adrenal problems although, as you said, medics don't always acknowledge it as an issue. I have a reasonably good endo who thought it might be a reason for some of my symptoms (I have diagnosed low thyroid issues) but a morning cortisol test came back in range so adrenals were ruled out. However, I now believe that a 24 hour saliva test is the correct test. I'm sure others more knowledgeable will be along to give advice.

With regard to your doc telling you that your thyroid tests were 'fine', did he/she tell you the exact numbers with lab ranges? It's very important to get a copy of the test results for yourself and see exactly where you are in the range. The majority of people feel best when in the top third of the range.

When you request new tests make sure they are Free T3 & Free T4.

Hope you feel better soon. Sadly, thyroid/adrenal issues are extremely frustrating problems when dealing with the medical profession.

samphire24

Thank you for your reply Wyldwood, I'm glad to have found somewhere to vent!

I have read that it is important that the adrenal issue is addressed before thyroid problems or else the adrenals get even more fatigued once thyroid function is restored. Do many here suffer from IBS, Crohns, Colitis?

My doctor did not tell me the exact number in the range but I will most certainly ask for free T3 and Free T4 when getting the next round of tests.

Of course all of this is complicated by a diagnoses of Acute Intermittent Porphyria last year, an apparently "rare" genetic blood disorder (before that it was a diagnosis of IBS.) I believe that all my symptoms have been caused by this but the medical profession are at pains to have me believe otherwise - that the low mood, anxiety, fatigue, brain fog etc. are "just the way you are made" - that's a direct quote from a doctor! I hope people will look into Porphyria as a possible cause of their ill-health, it has certainly made my entire story fall into place and I believe many more in Ireland have it and are undiagnosed.

sineady78

Hi there,

Not sure if this is the right way to go about this, sorry, first post, but Mistysky, I have been reading your posts and took your advice. Met with Dr M Griffin in Clane today and she has prescribed Thybon 20mcg daily, and reduced my T4 from 125/100 to 50mg daily. Nervous about starting it tomorrow. Can you tell me how it has affected you. I'm praying it will help me lose weight, nothing has worked in the past 2 years for me. Lift mood and ease the brain fog would be delightful too My T3 level was 1.5 last week.

Any advice would be appreciated.

Thanks

MistySky

Welcome to the forum sineady78!

I think you've definitely done the right thing by going to see Dr Griffin - I have found her very good in the few years I've been seeing her. I'm sure she explained that initially you will need to get blood tests done about every 3 months and go back to see her. She will monitor your test results closely and will adjust your meds accordingly. I wouldn't have any concerns at all about starting on Thybon - she has put you on the lowest dose to start off and will build up from there as you need it.

I did fairly well on combined Thybon / Eltroxin meds - my T3 levels were fairly 'normal' (if there is such a thing!), but my Free T4 was still low. Ordinarily this would have meant upping the dosage of Eltroxin to boost T4/FT4 levels, but I don't tolerate Eltroxin well (lots of nasty side-effects) so that wasn't really an option. It sounds like this isn't a problem for you, so hopefully you will do better on it than me.

After a lot of persuasion, Dr Griffin agreed to try me out on Armour Thyroid about 4 months ago. She has been building up the dosage gradually, so to be honest I'm still exhausted and have really bad brain fog, mood can be quite low sometimes etc. My bloods are still not normal so I'd say I have a way to go yet, but I'm really hopeful it will work.

One other thing that other people may have recommended too, is to look at the wheat in your diet. If you have tested positive for 'TPO Antibodies' [ask Dr Griffin] you likely have an autoimmune form of thyroid disease (Hashimotos). Many people recommend a gluten free diet for this - check out the paleo diet. I cut out wheat for 3 months last year and really trimmed up and had lots of energy, but I find it really hard to stay off it completely.

Best of luck!

sineady78

thanks so much for the reply I really appreciate it. I'm nearly a week on eltroxin and thybon now and feel really tired. I dont have any side effects to Eltroxin, dont think so anyway but havent felt normal in 4 years now.

My T4 and TSH levels were good and "normal too" but brain fog, low mood and weight issues continued. I had a baby 2 years ago and havent been able to lose a lb since then. I go hyper straight after the births and then hypo after a week or two, remaining hypo from then on.

I've been on so many exercise regimes and diets, slimming world etc. I was walking 30miles a week and on a gluten free (well, like you, as much as possible) diet for 3 months and lost nothing, had my mum and hubby on the same diet and the lbs walked off them : ( My TPO levels are very high and I have pernicious anaemia too. Having babies caused havoc with my brain and body. I've placed all hope in T3, would do anything to feel normal again and have the energy I used to! Dr G pointed out that it would be practically impossible not be depressed with the level of TPO's in my bloods, something to do with the neurotransmitters and serotonin! That made me feel better somewhat - at least I wasnt choosing to be miserable! She strongly suggested I consider and antidepressant too but wants to try T3 alone first.

I hope Armour works out for you Mistysky, I've read a lot about it too. Dr G breezed over it with me and seemed reluctant to try it but I was relieved she was happy to go ahead with combo treatment.

Keep in touch Mistysky, its nice to talk to someone who can relate! Best of luck with your treatment, hope you feel better soon x

Catherine86

Hi all

I'm a newbie to this, I was wondering can anyone shed any light on my latest results I've been feeling dreadful lately no energy.

TSH: 3.42
Free T4: 15.8
Free T3: 5.9

it's showing normal on my bloods but I know my tsh has gone up from 1.2 last year

lovelystuff

Sorry to hear you aren't feeling well. I only feel well when my tsh is between 1-2, and my consultant goes one step further are tries to keep me between 1.4-1.6 which is very narrow! Whenever I hit 2 i start to feel exhausted again, so for me it's always about what's normal for my body not the lab ranges. Hope you feel better soon!

Catherine86

Thanks lovely stuff. Yeah I just don't know what to say to my doctor as he doesn't feel it's high enough. Can you recommend a consultant?

lovelystuff

Catherine86 wrote: »

Thanks lovely stuff. Yeah I just don't know what to say to my doctor as he doesn't feel it's high enough. Can you recommend a consultant?

I see Margaret Griffin in the beacon hospital, she has a clinic in

lovelystuff

Catherine86 wrote: »

Thanks lovely stuff. Yeah I just don't know what to say to my doctor as he doesn't feel it's high enough. Can you recommend a consultant?

I see Margaret Griffin in the beacon hospital, she has a clinic in kildare too. I think the first consultation is 180 Euro,but well worth it in my opinion, she listens to symptoms and runs way more tests than most (cortisol etc). I couldn't recommend her highly enough!

Catherine86

Thanks so much I'm going to see can I get refferal for her. She sounds worth the €180 :-)

qo2cj1dsne8y4k

I am having awful problems with my thyroid. I got two readings from my blood test. One was 3. Something, the other was 179.8, they're slowly increasing my eltroxin but I feel and look like ****. All my hair is falling out, I have actual bald patches. There is psoriasis all over my body. My skin is so dry on my leg it feels like my skin is going to crack open. I'm sick constantly.

Is there anything I can do until the medicine makes me feel a bit better

Amazingfun

LexieOnRale wrote: »

I am having awful problems with my thyroid. I got two readings from my blood test. One was 3. Something, the other was 179.8, they're slowly increasing my eltroxin but I feel and look like ****. All my hair is falling out, I have actual bald patches. There is psoriasis all over my body. My skin is so dry on my leg it feels like my skin is going to crack open. I'm sick constantly.

Is there anything I can do until the medicine makes me feel a bit better

So sorry to hear this and I am afraid there is no guarantee the eltroxin is going to work for you ever as some of us are simply not able to convert the T4 to T3 and so continue to have hypo-symptoms. However you won't know until you give it a good trial so stick with it regardless.

In my opinion the best thing you could do right now is start AIP (Autoimmune Paleo Protocol) as even dietary changes help an awful lot of people feel better.
Like you I have psoriasis and alopecia (sounds like you might have it) and it's not uncommon for those of us with autoimmune illnesses to develop more than one

Here is the protocol and there are loads of Facebook groups devoted to people doing it for relief from autoimmune conditions: good luck!

http://autoimmune-paleo.com/paleo-autoimmune-protocol-print-out-guides/

lauriii931

Hi guys,

When I was 14 they thought that I would need some iodine for my thyroid. After a few years the medical center got another doctor who is focused on thyroid diseases. My doctor then diagnosed Hashimoto which was probably caused from the iodine and prescribed levothyroxine starting with 25µg. Rising it slowly to 50µg and after a while to 75µg.
I then moved to Ireland and got a bit lazy about it and finally stopped taking them for almost a year now.
I am feeling pretty tired almost every day and get a lot of headaches ...typical symptoms for Hashimoto I would say.
So I was wondering if you could recommend me a doctor in Dublin and the fees you spend since I would not like to travel to Germany all the time and would be grateful if you have any other tips for me since a few things seem a bit different to me compared to Germany

Babooshka

Hi there

I have just had initial tests come back with TSH elevated and now because my mother and sisters are hypo, my GP wants to begin me on meds based on this alone. This concerns me, while I have been sluggish all winter long and can sleep for Ireland, I am also active, don't have weight issues, go to the gym. I wouldn't say I have noticed major issues, but am prone to anxiety but always was, so I don't know if this is anything to do with it.

I am just wondering....did anyone who previously slept well all night first notice their sleep patterns were changing when they were first diagnosed? I have been waking between 3 and 5am for the past few weeks now and having trouble getting back to sleep. Normally I wouldn't move, and slept like the dead....so I really don't know if this is typical sign of an underactive thyroid or just something else. Just curious if other people had this. I also noticed my hands get very sore the past few months, like burning inside, don't know if this is typical of this condition either. I am really concerned about GP putting me on meds for this without further investigation so just wondering what other people went through at the beginning.

Wyldwood

Babooshka, welcome to the thyroid thread.

Firstly, you say your TSH is elevated but did your doc run FT4 & FT3 tests? You need all three to know how out of whack your thyroid is. Make sure you get a copy of your blood results showing the lab ranges so you can see where in the range you are.

Broken sleep and/or an inability to fall asleep are typical thyroid symptoms. Cortisol that is out of whack is also a contributor, you need 24 hour saliva test to get a picture of your cortisol.

Very hot or very cold extremities can also be related to thyroid problems. You need to have a good chat with your doc and maybe get a referral to an endo (though this isn't always more helpful). You shouldn't neglect your thyroid, if meds are needed, as the longer you're under active the longer it takes to recover.

Read as much of this thread as you can, there's a lot of very useful information here from knowledgeable thyroid sufferers.

Have a look at Mary Shomon's information on about.com
http://thyroid.about.com/bio/Mary-Shomon-350.htm

Also lots of info on
http://www.stopthethyroidmadness.com/

Hope you feel better soon

Babooshka

Wyldwood wrote: »

Hope you feel better soon

That's really helpful, thanks a million for the advice I will have a good read up. I will also ask about the other results from the doc too. Cheers

mickysquint

Hi folks, I'm just looking for other people's experiences on an issue I have at the moment.

Ok, so I'm a 35 year old man, I'm 6'2" and currently hovering around the 17 stone Mark. I've alway tried to stay fairly active and despite playing football a couple of times a week, gym a couple a times a week, giving up beer about 5 years back, and a half decent diet ( I won't lie and say I don't eat a bit of junk here and there) I can never really shift any proper weight but I just put it down to getting older. The last 8-9 months I have been feeling really really sluggish and constantly tired, physically and mentally, I can fall asleep any where almost instantly, and when I do push myself to do any thing physical I don't seem to have much stamina.

So just before Christmas I went to the doctor, instantly she spotted a swelling on my neck, after blood tests and ultrasounds it turns out I have a fairly large growth on my thyroid gland, I'm waiting for biopsy results to come back and then regardless of what it turns out to be I'm being taken in to have it surgically removed.

I'm just wondering if anyone else here has had the same issues and had surgery to have a lump on the thyroid gland removed? Did you find that every levels improved afterwards? I would love to think that I'm still young enough to get back in to shape if I can get this issue sorted.

Cheers guys