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!

thyroid misery

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