thyroid misery

gastons · 21-11-2014 8:50am

Thank you for your input. I'm sure the medical assessment I have booked will cover those bloods but I'll write them down to bring with me. I know from my original bloods that my levels for iron, b12 etc where normal. My muscle bloods were not good though, I can't remember the levels but I'll be getting them printed out on my visit on Monday.

From doing some research I thought the dose was probably too much too soon. I knew by my body it was too much. I took 75mcg yesterday and felt ok, so I'll go with that again today and see how I go. If needs be I can take 50mcg for a few days. I'm very lucky with my gp, she is knowledgeable on thyroid issues and she is very much a 'listen to your body' type doctor. I am still very unwell and I'm hoping to get slight improvement in time for Christmas.

I just need rest but being a stay at home mum to three young children it's near impossible to rest lol! The muscle cramps are still bad, and the shortness of breath is still there. It's mad to think a little gland can cause so much havoc to the body.

Wyldwood · 21-11-2014 12:11pm

gastons, the reason I recommended an endo was because it appeared your GP wasn't thyroid savvy having upped you so quickly by so much but since you say that was a locum then stick with your own doc. An endo is a bit hit and miss, some are great most are more expert on diabetes than thyroid, unfortunately.

Best of luck with the meds and hope you feel better soon but it does take up to 6 weeks for the levo to have any affect on the system so don't be disappointed if the bloods next week aren't too different to your recent ones normally bloods are repeated at 6 weeks.

Wyldwood · 22-11-2014 9:55pm

Would be interested in hearing the opinions of the very knowledgeable people on here about my recent bloods. As I have mentioned I can't tolerate Eltroxin but had been taking 12.5mcg daily with an extra 12.5 once a week. 3 months ago I upped that dose to 12.5 daily with an extra 12.5 every 5 days. I know this is a minute increase but I have to take it verrrry slowly.

Anyway, I had hoped to see an improvement in results but the TSH came back exactly the same @ 9.84, however, the FT4 has increased from 12.8 to 14.3 so that's something at least. That's the highest it's been since July 2012. Lab no longer testing FT3 so will have to look at getting that done elsewhere.

The only other issue with the bloods is that my cholesterol is on the increase but doc said not to worry as that's related to the thyroid. However when I got my printout I noticed that it was the HDL that had gone up and LDL was the same. Shows how important it is to read all results carefully yourself.

I have now increased minutely again by taking the extra 12.5 every 4 days and will get more bloods in the New Year. I feel reasonably ok except for some ongoing gastric issues. Will probably get scope done to see what's going on there.

The endo is suggesting RAI to kill off what's left of my thyroid but I'm terrified that I still won't be able to tolerate Levo and then I'd be in big trouble. At least I now still have a bit of thyroxine firing intermittently from my little bit of thyroid tissue.

What I wouldn't give to go back to pre-2010 when I popped a 100mcg tab every morning and didn't give my thyroid a second thought.

Anyone else here have stubborn TSH while FT4 rises? Anyone have RAI after levo intolerance?

cltt97 · 23-11-2014 12:07am

Hi Wyldwood - it could be exactly what my endo explained to me. He said when the pituitary gland is in overdrive of producing TSH due to the constant demand it can take quite some time for it to adjust to the new situation and it still spits out more than is actually needed and it takes some time to even out. Can't really comment much on the RAI - as you know I'm super sensitive to eltroxin or any thyroid meds as well, but I've always been hypo, so I'm not if the sensitivity really has to do with the thyroid gland itself...

Amazingfun · 23-11-2014 2:36am

Wyldwood wrote: »

Would be interested in hearing the opinions of the very knowledgeable people on here about my recent bloods. As I have mentioned I can't tolerate Eltroxin but had been taking 12.5mcg daily with an extra 12.5 once a week. 3 months ago I upped that dose to 12.5 daily with an extra 12.5 every 5 days. I know this is a minute increase but I have to take it verrrry slowly.

Anyway, I had hoped to see an improvement in results but the TSH came back exactly the same @ 9.84, however, the FT4 has increased from 12.8 to 14.3 so that's something at least. That's the highest it's been since July 2012. Lab no longer testing FT3 so will have to look at getting that done elsewhere.

The only other issue with the bloods is that my cholesterol is on the increase but doc said not to worry as that's related to the thyroid. However when I got my printout I noticed that it was the HDL that had gone up and LDL was the same. Shows how important it is to read all results carefully yourself.

I have now increased minutely again by taking the extra 12.5 every 4 days and will get more bloods in the New Year. I feel reasonably ok except for some ongoing gastric issues. Will probably get scope done to see what's going on there.

The endo is suggesting RAI to kill off what's left of my thyroid but I'm terrified that I still won't be able to tolerate Levo and then I'd be in big trouble. At least I now still have a bit of thyroxine firing intermittently from my little bit of thyroid tissue.

What I wouldn't give to go back to pre-2010 when I popped a 100mcg tab every morning and didn't give my thyroid a second thought.

Anyone else here have stubborn TSH while FT4 rises? Anyone have RAI after levo intolerance?

Wyldwood I don't know if you are on Facebook but there are some outstanding and generous people who are excellent at "lab reading".
In fact one of the women who helps an enormous amount of people get their "ducks in a row" just started a new group today. It's called "Thyroid Advocates" and people post their results on there for some of the more experienced members to give their thoughts on.

My goal for 2015 is to get better at this very thing but I am kinda useless at it for the moment lol so amn't much good to you I'm afraid

Here's the link: https://www.facebook.com/groups/1542728759301425/?fref=nf

Rosie1983 · 23-11-2014 10:16pm

Hi all. After over a year of healthy thyroid levels for the first time since starting on Erfa last year, I recently swung quite underactive for some unknown reason. Had blood tests done in August and October and the Oct ones show that my levels are going back closer to the "normal range", but it's frustrating nonetheless. Have started taking my Erfa dose twice a day - once in the morn and once in the evening. Hoping that next blood tests in December will show an improvement.

Anyway I have a quick question for you. Does anyone here suffer with stiff or tight calf muscles? This has only recently started happening to me, especially when I get out of bed in the morning, or when I stand up from sitting on the couch. Not really sore or painful but just oddly stiff light the muscles has seized up. Wondering if I need to start supplementing with magnesium maybe, or a multivitamin again... Who here takes vitamins/ supplements to support their thyroid?

Wyldwood · 24-11-2014 11:01am

Rosie1983, it's so frustrating when the thyroid acts up for no reason but hang in there it's probably just a temporary blip.

I can't comment on the leg muscles as I don't have that problem. I take magnesium in trans-cutaneous spray form and vit d on my docs recommendation. I know a lot of hypo sufferers also need B12 but thankfully mine's ok. Iron is another thing that needs to be watched.

Hope you feel better soon. Winter seems to make hypo symptoms worse also I find.

Staplor · 24-11-2014 2:43pm

Hi All,

I have no affiliation with them, but did get a great price on Armour off Tesco Pharmacy, Boots were about €60 per month for a 100 tablet bottle of 60mg. Local pharmacy was about €80, Tesco could do them for about €30 per month. Naas was where I got mine.

Blingy · 25-11-2014 4:47pm

Looking for some advice. I am 13 weeks pregnant and have had an underactive thyroid for 8 yrs approx. My GP monitors me and I get blood tests every 6 mths. My blood tests 2 weeks ago showed TSH 0.6 and T4 21.1.
What should the T4 reading be? Hospital just told me it is kinda high and I might need to be referred to the endo clinic. Thank you.

Wyldwood · 25-11-2014 7:23pm

Blingy, the blood test result ranges vary from clinic to clinic. Here in Cork CUH range for Free T4 is 12-22 but you don't make it clear if it's Free T4 was measured. On the face of it you look just at the top of the range.

I suggest you ask your gp for a printout of the blood results and that will give you the ranges for all tests done.

Congratulations on the pregnancy, hope all goes well for you.

Blingy · 25-11-2014 7:33pm

Wyldwood wrote: »

Blingy, the blood test result ranges vary from clinic to clinic. Here in Cork CUH range for Free T4 is 12-22 but you don't make it clear if it's Free T4 was measured. On the face of it you look just at the top of the range.

I suggest you ask your gp for a printout of the blood results and that will give you the ranges for all tests done.

Congratulations on the pregnancy, hope all goes well for you.

Thanks wyldwood. I think it must have been ft4 but I didn't confirm with them. Should have.

cyning · 25-11-2014 9:24pm

Blingy wrote: »

Looking for some advice. I am 13 weeks pregnant and have had an underactive thyroid for 8 yrs approx. My GP monitors me and I get blood tests every 6 mths. My blood tests 2 weeks ago showed TSH 0.6 and T4 21.1.
What should the T4 reading be? Hospital just told me it is kinda high and I might need to be referred to the endo clinic. Thank you.

Congratulations

Don't worry about being referred to the endo clinic. Basically when your pregnant your eltroxin will need tweaking. In my case I need less because the placenta was doing some of the work of my thyroid. Which is a bit strange! For others, they need more. You will need to be monitored more closely because baby needs your thyroid levels to be as stable as possible: which is why they might be worried about your levels being higher then normal. Lab levels differ so it all depends on where it was done.

kalvinl8 · 29-11-2014 10:07pm

I was diagnosed with an underactive thyroid last year and I took levothyroxine for a few months which left me feeling ten times worse than what I was. I stopped taking them and got my bloods done again and they returned back as normal even though I still felt horrible.

I have been living with symptoms of an underactive thyroid and not taking meds for nearly 2 years now because I know I will only be prescribed levothyroxine again by my GP which will leave me feeling worse.

Now however I have done plenty of research and would like to get my bloods done again, testing for thyroid levels and autoimmune diseases and adrenal fatigue.

If my thyroid levels return as low I would like to try taking a different type of medication called Armour which has an extremely high reputation for making people with hypothyroidism feel better.

The problem with Armour however is that it's very hard to get a prescription for it here in Ireland.

Since I know my doctor will refuse to prescribe me with Armour I would like to find one that will (preferably in Connacht).

I also would love to hear from anybody else who has hypothyroidism and their experience with different doctors, endocrinologists, supplements and medications.

Wyldwood · 29-11-2014 11:17pm

Kalvinl8, it's not wise to let your thyroid get too out of hand as it takes longer to get back on track again. There are many people on this thread who are on various natural thyroid medications and doing well. I'm sure somebody will be along to give you names of doctors prescribing in your area. If not ask your local pharmacy which doctors prescribe it.

As for experiences of other thyroid sufferers all I can recommend is that you have a read through this thread as there is a wealth of information on all aspects of thyroid illness and treatment.

Get your doctor to run a thyroid panel including antibodies and Free T3, also cortisol to check adrenals, vit B12, D and iron profile. All these can affect your thyroid function.

kalvinl8 · 30-11-2014 2:15pm

Thanks for the response Wyldwood.

That's a good idea on how to find doctors who prescribe Armour in the locality!

I plan on getting all the tests you have listed completed by this time next week and once I get the results I will post them on here.

Since posting on this yesterday I have read that the formula of Armour has changed in the past 2 - 3 years and it is supposedly not half as effective as it once was (apparently the government has paid the company a large sum of money to change the formula as many were moving away form the recognised eltroxin brand). Im not sure how much truth is in this but I would be interested in hearing from someone who has been using it for the past 3+ years and if they have noticed any difference.

Although reading this made me less confident on trying Armour, I would still jump at the chance to try it for myself and see how my body responds.

But after having the thought that I may not respond well to the new Armour I felt I needed a back-up plan. And after doing a bit of research I came across a medication called "Thyroid-s", a medication that is supposedly as good as, if not even better than the new Armour. Although it cannot be prescribed it is quite cheap to buy online (1000 pills for around 60 euro).

Has anyone ever heard of or, better yet, tried Thyroid-s? I would love to learn more about it, as it sounds like a miracle drug!

From what I can gather it contains T1, T2, T3 and T4 (but don't quote me). If your more interested I can pm whoever wants to find out more some useful links of reviews and where to purchase them.

Emme · 30-11-2014 3:37pm

kalvinl8 wrote: »

Thanks for the response Wyldwood.

That's a good idea on how to find doctors who prescribe Armour in the locality!

I plan on getting all the tests you have listed completed by this time next week and once I get the results I will post them on here.

Since posting on this yesterday I have read that the formula of Armour has changed in the past 2 - 3 years and it is supposedly not half as effective as it once was (apparently the government has paid the company a large sum of money to change the formula as many were moving away form the recognised eltroxin brand). Im not sure how much truth is in this but I would be interested in hearing from someone who has been using it for the past 3+ years and if they have noticed any difference.

Although reading this made me less confident on trying Armour, I would still jump at the chance to try it for myself and see how my body responds.

But after having the thought that I may not respond well to the new Armour I felt I needed a back-up plan. And after doing a bit of research I came across a medication called "Thyroid-s", a medication that is supposedly as good as, if not even better than the new Armour. Although it cannot be prescribed it is quite cheap to buy online (1000 pills for around 60 euro).

Has anyone ever heard of or, better yet, tried Thyroid-s? I would love to learn more about it, as it sounds like a miracle drug!

From what I can gather it contains T1, T2, T3 and T4 (but don't quote me). If your more interested I can pm whoever wants to find out more some useful links of reviews and where to purchase them.

The Armour formula changed in 2009 but I am not sure if it changed again after that. I have always been on Armour and feel reasonably well on it. I have heard better reports about Armour than Eltroxin.

Amazingfun · 30-11-2014 9:51pm

I came across a medication called "Thyroid-s",

I can vouch for it from personal experience. I used it for my first six months of self treating and then switched to Thyroid. Both are brilliant

kalvinl8 · 30-11-2014 10:40pm

Amazingfun wrote: »

I can vouch for it from personal experience. I used it for my first six months of self treating and then switched to Thyroid. Both are brilliant

Great to hear you had success!!

When you say "self treating" you mean your doctor was unaware you were taking it? I'm just wondering as I would like if my doctor would be as open-minded.

Amazingfun · 30-11-2014 11:07pm

kalvinl8 wrote: »

Great to hear you had success!!

When you say "self treating" you mean your doctor was unaware you were taking it? I'm just wondering as I would like if my doctor would be as open-minded.

I eventually told my GP I had stopped taking the eltroxin he'd prescribed for me and had started Thyroid-S (NDT).....but I was a bit nervous alright

He didn't officially sanction it, and of course said he didn't approve, but he saw the effect it had on how I felt and eventually then in my dramatically altered appearance via weight loss. He agreed to keep monitoring me which I appreciated, even though I hardly see him any more tbh. I do need to get my bloods done @ The mater in the new year so I will need him again for that

kalvinl8 · 30-11-2014 11:26pm

I think I will have to do the same thing if my doc won't prescribe me with armour. Is there a possibility that my doctor could refuse to monitor me if he doesnt approve of me taking different medication?

Has anyone any knowledge on if you can get armour covered on a medical card?

Amazingfun · 30-11-2014 11:44pm

kalvinl8 wrote: »

I think I will have to do the same thing if my doc won't prescribe me with armour. Is there a possibility that my doctor could refuse to monitor me if he doesnt approve of me taking different medication?

Has anyone any knowledge on if you can get armour covered on a medical card?

Yes I believe so but you won't know until you ask. I don't know about the medical card/armor but can't see why not if indeed you find a gp to prescribe it?

sam34 · 01-12-2014 8:29pm

Please don't discuss buying meds online without a prescription, which is illegal in this country.

cyning · 01-12-2014 9:29pm

Armour isn't even being covered in full by DPS anymore, they are covering like €31 of it it's gone up in price so I literally don't know what I'm going to do because it's doubled in price this month from the supplier

we tend to hit the €144 every month with my daughter and husband, which means we would end up paying close to €200 every month that we cannot afford.

There was a shortage last month on the 60 and 30mg tablets so could only get 15mg tablets which cost €91 for a 12 day supply. That's almost €270 for a month. Just so frustrated by it that it works so well for me and that I don't know how we are going to manage it.

MistySky · 01-12-2014 10:52pm

cyning wrote: »

Armour isn't even being covered in full by DPS anymore, they are covering like €31 of it it's gone up in price so I literally don't know what I'm going to do because it's doubled in price this month from the supplier we tend to hit the €144 every month with my daughter and husband, which means we would end up paying close to €200 every month that we cannot afford.

There was a shortage last month on the 60 and 30mg tablets so could only get 15mg tablets which cost €91 for a 12 day supply. That's almost €270 for a month. Just so frustrated by it that it works so well for me and that I don't know how we are going to manage it.

It may be worth contacting the Healthwave pharmacy in Dundrum, Dublin to see if it's any better value.

I'm currently on 30mcg of Armour and it costs about €16 per month, although from what you've said it will probably be more expensive next month.

They also deliver outside of Dublin (up to 4 times a year for free I think).

cyning · 01-12-2014 11:08pm

I'm on 120mg so id say it will work out similar... I'll chance ringing them re delivery because it would be a bit if a trek

My chemist in fairness have been amazing: have made lots of calls to DPS, checked different suppliers etc.

I'm just frustrated!

MistySky · 01-12-2014 11:13pm

cyning wrote: »

I'm on 120mg so id say it will work out similar... I'll chance ringing them re delivery because it would be a bit if a trek

My chemist in fairness have been amazing: have made lots of calls to DPS, checked different suppliers etc.

I'm just frustrated!

Best of luck! Fingers crossed it might be a bit cheaper, although not sure how that would impact your DPS, but worth investigating anyhow.

cambasque · 02-12-2014 4:20pm

there is good reading here ! my thyroid was taken out due to cancer 7 years ago, but i have never really got my energy levels back to anywhere near where they used to be...i get absolutely no sympathy from my doctor, changed from my last one who was the same, so don't feel like changing again, have anyone tips on what might help? i try to eat liver, lots of fresh veg and fruit every week, rarely drink etc. do you ever get back to feeling anyway normal i wonder?! can't go out to work, luckily OH does. i as started at 175, down to 125mg after 6 months which i stayed on until 6 months ago where a locum dr. recommended going down to 112 mg, to as he said 'stop heart problems coming on' . put on a few kilos when that was changed. had a sudden and severe calcium drop after surgery which led to a longer recovery. There seems to be a long imfo around for people with thyroid disease but little imfo for people with no thyoid at all. I ued to have an endo but she stopped seeing me a year after surgery, said there wwas nothing else she could do.

Staplor · 02-12-2014 4:24pm

Hi All, RE: Armour Price, I saved a bucked in the Tesco Pharmacy in Naas, it was about €30 for a 100 tablet bottle of 60mg.

I rang up and ordered, then presented the prescription when collecting, no hassle and club card points too.

Sapphire3 · 10-12-2014 4:20am

Hello All,

Hope it is ok to jump into the thread! I have suffered from an under-active thyroid now for the past 10 years or so and have been on Eltroxin and now its generic brand Levothyroxine. To be honest, I still feel crap and it is doing nothing for me. I am thinking of going to see Dr. Margaret Griffin in Clane, to see if she would prescribe me Armour, as my GP is useless.

Anyone know how much it is to see her? Also, can I make an appointment to see her without a referral?

lovelystuff · 10-12-2014 9:59am

I see Dr Griffin, the first appointment was 160 and follow ups 120, but to be honest I find her so thorough that I would pay even more! I got a referral letter from my gp and sent it into her secretary, all the details were on the hospital website. I was seen about 2 weeks after my referral went in! Just be aware though that she won't give armour to everyone, she currently won't prescribe it to me as I'm late twenties, she said it's not regulated enough to take during pregnancy (which isn't on the cards for me just yet!). Most of your contact with Dr Griffin is by phone so I only pay to see her once a twice a year, every though she monitors my blood every8 weeks. Best of luck with it and hope you feel better soon!

Sapphire3 · 11-12-2014 2:04am

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 · 20-12-2014 9:09pm

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

RoadhouseBlues · 20-12-2014 10:33pm

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

lovelystuff · 21-12-2014 10:00pm

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

Sapphire3 · 24-12-2014 1:25pm

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

Wyldwood · 03-01-2015 4:26pm

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 · 03-01-2015 9:19pm

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 · 06-01-2015 11:59am

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 · 06-01-2015 3:17pm

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 · 09-01-2015 6:59pm

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 · 11-01-2015 2:32pm

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

samphire24 · 14-01-2015 7:16pm

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 · 14-01-2015 8:06pm

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 · 14-01-2015 9:32pm

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 · 02-02-2015 8:39pm

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 · 03-02-2015 3:33pm

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 · 08-02-2015 11:16pm

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 · 10-02-2015 1:16pm

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 · 10-02-2015 2:15pm

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 · 10-02-2015 3:47pm

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?

thyroid misery

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