thyroid misery

trixy

I have under and over active thyroid for years , life was miserable . Went to prof McKenna in st Vincent's , was put on right combo of meds for 5 yrs, got all clear 8 yrs ago and off meds since. My experience st Vincent's has best endocrinologist dept in country but prof McKenna maybe retired now . All these years later I have very minimal syptoms left, sugar levels up and down and tiredness hits out of blue, I was told due to the dis function of my thyroid I will always have low immunity but once I was 'cured' I felt amazing and 'normal'. If possible I suggest getting referred to Vincent's

cltt97

Orla K wrote: »

I saw this on thyroid change facebook page, he's saying that if you TSH is in the normal range you have somatoform disorder or a simple way of saying it your a hypochondriac and are imagining the symptoms. I don't know how he's getting a prize for that.

Ha! Well, there is one thing I totally agree with - thyroid disease definitely drives you mental, especially when you read crap like that!

marymarcy

Orla K wrote: »

I saw this on thyroid change facebook page, he's saying that if you TSH is in the normal range you have somatoform disorder or a simple way of saying it your a hypochondriac and are imagining the symptoms. I don't know how he's getting a prize for that.

I went to a number of public Endo's in Clonmel, 2 were nice, the last guy told me I got the symptoms from a book, and that the more intelligent the patient the more difficult they were. Horrible horrible man. I cried after that visit. I then went to a lovely private guy in Dublin, he still said my thyroid was adequately treated and that i had post viral fatigue, but he was lovely and kind and respectful and willing to try things, which I am beginning to realise is a rarity.

PS. PM sent to you Orla K re naturopath.

marymarcy

Wyldwood wrote: »

marymarcy, thanks for the reply. I'd love to get the name of the naturopath please. I'd travel to the moon to find a solution to this illness at this stage.
After 30 years of stability on 100mcg Eltroxin after a thyroidectomy, I've had 2 years of hell since I developed a mysterious intolerance of the medication and can only take 25mcg daily now with the help of a beta blocker, which isn't enough.

PM sent Wyldwood. He might be well worth a visit. He said my thyroid, gallbladder and liver needed work, basically to kind of clean out the system first of all I think was the way he looked at it. He said I was like a good car with dirty spark plugs!

Orla K

marymarcy wrote: »

I went to a number of public Endo's in Clonmel, 2 were nice, the last guy told me I got the symptoms from a book, and that the more intelligent the patient the more difficult they were. Horrible horrible man. I cried after that visit. I then went to a lovely private guy in Dublin, he still said my thyroid was adequately treated and that i had post viral fatigue, but he was lovely and kind and respectful and willing to try things, which I am beginning to realise is a rarity.

PS. PM sent to you Orla K re naturopath.

:eek: I don't know if the bit in bold was meant to be a compliment or an insult probably both! Either way he shouldn't have said that to you.

If people want to thyroidchange have made out a letter that can be sent to Novo Nordisk Fonden you'll find it here

Here's some of the letter and the jist of what it's about

Thyroid patients worldwide are impacted by Novo Nordisk’s decision which will add false value to Weetman’s misperceptions of thyroid disease. Your organization will become complicit in the continued suffering of our community.

marymarcy

Orla K wrote: »

:eek: I don't know if the bit in bold was meant to be a compliment or an insult probably both! Either way he shouldn't have said that to you.

If people want to thyroidchange have made out a letter that can be sent to Novo Nordisk Fonden you'll find it here

Here's some of the letter and the jist of what it's about

I am paraphrasing slightly, he isn't Irish, but his meaning was very clear, and I did try to give him the benefit of the doubt but ultimately couldnt! I brought my mam with me for moral support, after the first guy I saw (who was a nice man) told me I might be very very slightly bipolar, I was a bit upset so brought her with me every time after that, and she noticed that tho this guy was very polite and shaking hands, "pleased to meet you" etc at the start, when I challenged and asked questions during the consultation (very politely), he actually walked out of the room at the end without so much as a goodbye, never mind shaking hands! He was a locum (they were trying to fill the positiion, hence my seeing three different endos within a short space) so I saw no point complaining. I'm just so thankful I feel well and dont have to go back, it was nerve wracking each time as I felt they didnt believe me. At least dealing with the private man in Dublin for tweaks to medication etc is a pleasure as he is a gentleman.

Seaneh

I've just, today, been diagnosed with a hypoactive thyroid.

For the last few months I've been feeling like ****. Getting tired very easily, generally fatigued, etc.

Kinda glad it's been figured out at last, but at the same time, have no idea what to expect.

Picking up my prescription tomorrow and I'm just hoping I start feeling normal again soon.

Any thing I should be looking forward to here peoples?

Seaneh

Just to add, in the process of figuring out what was up we did a few rounds of full bloods over a few weeks and kidney and liver functions were fine, blood counts were fine and iron was fine (have had this checked a few times in the last few years since we found out ym family is prone to hymochromotosis) but Vit D was low and I've been taking a pill for that for about 3 weeks now.

Wyldwood

Seaneh, sorry to hear that you've joined the thyroid misery club but welcome. If you read through this thread you'll get lots of very good information on how to handle this condition.

How quickly you respond to the meds (I'm presuming Eltroxin?) depends entirely on how low your levels are & what strength meds you're on. Did you get printouts of your thyroid levels including lab ranges? If so keep a copy for future reference. Normally you'd start on Eltroxin 25 or 50mcg & work up very slowly until you feel better. It's a slow process for most people. You need to have bloods done about 6 to 8 weeks after starting to check where your levels are at to see if further adjustments are needed. Don't be surprised if it takes several weeks to feel any improvement as Eltroxin is slow to kick in. You should feel better after being on the initial dose for a few weeks but could find yourself slipping backwards again until dosage is increased. It's trial and error until the thyroid levels off so hang in there. Also the low vit. D would affect the thyroid so important to get that up.

Also important to take meds first thing in morning about half hour before food. Avoid soya products as these inhibit thyroxine uptake & leave 4 hours between thyroxine and iron or calcium tabs. Not sure about vit D but best to leave a gap.

missloulou

Hi,

As I have only just seen this thread I thought I'd join the club, was diagnosed in early Sept as being extremely hyperthyroid. I went to the endo clinic in Vincents who put me on Neomercazole for 2 months and am now 1 month into taking 50mg Eltroxin a day.

Have to go back to the endo clinic in 3 weeks so hopefully things are improving.

Supermensch

Seaneh wrote: »

I've just, today, been diagnosed with a hypoactive thyroid.

For the last few months I've been feeling like ****. Getting tired very easily, generally fatigued, etc.

Kinda glad it's been figured out at last, but at the same time, have no idea what to expect.

Picking up my prescription tomorrow and I'm just hoping I start feeling normal again soon.

Any thing I should be looking forward to here peoples?

Regarding something to look forward to, and this could be a negative depending on your perspective, but free weight loss! Lost over a stone very soon after starting on Levothyroxine without changing my lifestyle at all

Seaneh

Supermensch wrote: »

Regarding something to look forward to, and this could be a negative depending on your perspective, but free weight loss! Lost over a stone very soon after starting on Levothyroxine without changing my lifestyle at all

WOOHOO!!!!!!!

cltt97

Supermensch wrote: »

Regarding something to look forward to, and this could be a negative depending on your perspective, but free weight loss! Lost over a stone very soon after starting on Levothyroxine without changing my lifestyle at all

Don't get too excited yet, this is the exception rather than the norm. Most of us find that we finally stop putting on weight when starting treatment, but it doesn't really fall off. Think this is only the second time round that someone on this thread mentioned this type of weight loss!

Seaneh

Hey, don't try kill my buzz buddy!


I took my first pill this morning. 50mg Elthyroxine, have my first follow up blood test on Jan 11th.

Here's hoping i start feeling a little less sh*t soon

cltt97

Sorry, didn't mean to :-)

It's like other posters said, it takes a while before things will stabilise. Most people experience a fairly quick burst of energy and feel fantastic after starting Eltroxin, but two weeks later it ebbs off again, then you need to increase the dose, and voila feeling better... this cycle continues for quite some time until you've reached a steady state blood concentration. Could take up to a year, so one thing people have to understand is that whatever pill you'll end up taking, don't expect instant miracles, it will take the body time to recover - usually it takes years before you notice that something is wrong, so equally it can take quite some time for everything to return to normal. Lots of people do fine on Eltroxin and live without complaints, the people that come to boards like this one usually are they ones for which this is not the case, so hopefully you'll fall into the former category!

Seaneh

Took this picture yesterday just before I took my first pill.
I call it "the first day of the rest of my life".

:pac:

Cora Mahoney

Welcome

I am only coming up to the six week mark of taking Eltroxin, and have mixed results so far. I have definitely had a 'lift' of some sort, but was hoping for more tbh. My hair loss is still somewhat alarming, but I am cheered that there are no bald spots, just a general thinning. I am lucky I have very think and long hair, and that it seems it's only me who knows how much hair is falling as I see it constantly in the shower and around my place. I just had my check up blood test and will find out the results next week when I expect my doc to recommend increasing the dosage. I have been taking 50 mg daily so far.

I have gone down 10 pounds so far, but I have gained over two stone in the last 2 years, and have been sliding up and down this 10 pounds for the last year, so this is not unusual for me. I will know better how things are going come the new year I think, if this trend of weight loss continues to go down

I ordered some iodine online and I take a few drops in a glass of water along with 2 brazil nuts daily. Just read about it online, not sure if it's helping me or not, but figured I may as well try it out.

LimerickBishop

Diagnosed NOV '09 TSH of 75. Put on 75mcg of Eltroxin. 100KG
Blood Test MAR '10 TSH of 17. Kept on 75mcg of Eltroxin. 95KG
Blood Test JUL '10 TSH of 15. Put on 100mcg of Eltroxin. 93KG
Blood Test SEP '10 TSH of 12. Kept on 100mcg of Eltroxin. 92KG
Blood Test NOV '10 TSH of 10. Put on 125mcg of Eltroxin. 91KG
Blood Test JAN '11 TSH of 5. Kept on 125mcg of Eltroxin. 90KG
Blood Test APR '11 TSH of 4.18. Kept on 125mcg of Eltroxin. 89KG
Blood Test JUL '11 TSH of 2.40. Kept on 125mcg of Eltroxin. 84KG
Blood Test SEP '11 TSH of 6.04. Kept on 125mcg of Eltroxin. 85KG
Blood Test NOV '11 TSH of 3.00. Kept on 125mcg of Eltroxin. 85KG
Blood Test MAR '12 TSH of 11.80. Put on M-F 125mcg /S-S 150 mcg of Eltroxin. 86KG
Blood Test JUN '12 TSH of 5.10. Kept on M-F 125mcg /S-S 150 mcg of Eltroxin. 89KG
Blood Test NOV '12 TSH of 6.00. Kept on M-Th 125mcg /F-S 150 mcg of Eltroxin. 86KG

Hello All,

I'm feeling very well these days. Was advised last week that if I felt well on this dosage, there was no need to change it, so I'm still on 125/150.

I'm physically very active during the day. I'm up at 5:30 am, at work by 7am, and work through to 8pm most days. I'm usually in bed by 10pm. I have the energy to get up and around. I know I could lose more weight if I cut out treats like desserts, but I'm happy enough all in all.

I hope my case gives people here hope. It certainly wasn't easy, especially at the time of my diagnosis, but I was determined to get the better of the condition, and I think I have achieved that. I was very unfit 3 years ago, but I started going for walks every second day, then gradually built that up to every day, and slowly but surely doing more and more physical activity. I think once you feel you have more energy, the best thing to do is try to use it physically. And walking is good for the mind too, it's amazing that whatever problems I had seemed to be more manageable after I thought about things whilst I walked.

Don't waste time feeling sorry for yourself. Look at yourself in the mirror, and ask yourself are you going to settle for this, or are you going to give it your best shot at feeling well again.

I understand other's situations may be more complicated, and I don't mean to be preaching, but you must take control of the situation, otherwise the condition will control you.

Best Wishes,
Colin

Wyldwood

Limerickbishop, great to hear you're feeling so much better. Are you still in London? I must agree that exercise is one of the most important aspects of managing this condition. I walk for about an hour most days and always feel better afterwards. I wonder if it's the fact that it increases metabolism?

Cora, I would be very careful of supplementing iodine. Iodine deficiency is very rare in the developed world and can do more harm than good in a lot of cases. I'd check with your doc before doing that, especially as you're still at the early stages of treatment.

cltt97

Wyldwood wrote: »

Cora, I would be very careful of supplementing iodine. Iodine deficiency is very rare in the developed world and can do more harm than good in a lot of cases. I'd check with your doc before doing that, especially as you're still at the early stages of treatment.

Indeed, especially if you Hashimoto's. It can fuel the autoimmune reaction. Iodine is generally a very tricky element to take, so I would definitely advise against it.

Cora Mahoney

Thanks for the advice, I guess I will stop? I don't feel any different on it anyways.

I based taking it on this woman's story:

http://misslizzy.me/

cltt97

LimerickBishop wrote: »

I'm feeling very well these days.

I hope my case gives people here hope.

I understand other's situations may be more complicated, and I don't mean to be preaching, but you must take control of the situation, otherwise the condition will control you.

Great to hear you're doing well, and yes, it's lovely to get some good news! I also seem to finally get there, after 3 years of nightmare and having every last test under the sun and trying all sorts of different things, I am finally approaching the normal range. Not quite there yet, but am positive for the first time in a long time that I'll get there.
And it's like you said, you must take control, otherwise you at the mercy of someone else. I was lucky to find an endocrinologist who was willing to work with me and who listened to me and who was as much interested in how I feel as he was in my lab results.

cltt97

Cora Mahoney wrote: »

Thanks for the advice, I guess I will stop? I don't feel any different on it anyways.[/url]

Well, none us here are doctors, so can't really advise on this. Also everyone of us is different and react differently to all the possible treatment options. If you are hypothyroid due to low iodine then you'd benefit from taking it, if you have autoimmune thyroiditis it can harm you, although there is some controversy about this, too. So it's best to discuss this with your endocrinologist, but the general opinion is that iodine can fuel the inflammation, as it stimulates TPO, which again is the one against which your body forms auto-antibodies. I have recently seen somewhere that selenium can counteract this, but I need to look into this a bit more and discuss with my endo next time I see him.

Cora Mahoney

Yeah that's the reason I was taking the Brazil nuts with it, for the selenium.

ANyways, I am not taking loads. I just got my bloods done yesterday so I am very interested to see what they will be come next week

Cora Mahoney

Ok so my first TSH result is now 7.5 and that is down from 29.7 almost 6 weeks ago

My doc is upping the eltroxin to 75 mg a day from 50 mg and we will test again in 8 weeks.

One thing she said tweaked my *alarm* but I will deal with it down the road, and that was her comment that "we need to get your TSH to 4.9 as that is the upper limit of normal". Now from my research I know that it still quite high and I thought 3 was the upper accepted limit these days, but again, I will deal with that down the road. The good news is I seem to be headed in the right direction, and I am going to keep taking my iodine drops and brazil nuts for the time being.

Hope everyone else is doing well!

Cora Mahoney

Sorry, one more thing. She said my freet4 level came back as 16, which she called normal.
But then I recalled seeing this:

If your doctor ran a test called Free T4, or Free Thyroxine, normal range is approximately 0.7 to 2.0. If your result was less than 0.7, your doctor might consider that indicative of hypothyroidism.

Grrrr, this stuff is so confusing!

Wyldwood

Cora the "normal" range for Free T4 depends on the lab your bloods were sent to, the norm here in Cork is between 12 and 22. A tip for you is to always ask for a copy of your results as these show the ranges from the lab also, make a note on the results of what dosage of meds you were on when they were taken & any supplements you were taking. It's also useful to have them to look back on and know what your result was when you're feeling well.

With regard to your doc saying she wants to get the TSH below 5, again the normal range varies from lab to lab. Here in Cork the range is 0.4 - 3.8. You need to find your own sweet spot as fitting into the "normal" range is a very personal thing.
,

Galbin

marymarcy wrote: »

If you are interested I can pm you his details. I was miserable before I went to him. He does iridology and blood tests. He put me on liver salts, milkthistle, zinc, NADH, L-tyrosine and progesterone cream. That was 5 months ago, I am due back to him in ten days, at the moment I am only taking l-tyrosine and the progesterone cream, and still feeling fine, able to work full time, exercise, clean the house, meet friends, do classes, anything I want to do, whereas before, I was having to look into going part time at work. .

Was the progesterone cream prescription? Can you pm me his details?

Galbin

Wyldwood wrote: »

Just wondering if anyone has tried alternative therapies, acupuncture, reflexology etc. I'm totally failing to get this thyroid problem under control. Latest test results TSH 7.06 (4-3.8), FT3 4.1 (3.9-6.7), FT4 13.8 (12-22).
Endo says, as T3 & T4 are in range & I can't tolerate any increase in meds above 25mcg, I will have to accept that this is the best I'm going to be. While I do have spell of good days I still have plenty of bad days when I have palps, jittering, lightheadedness, muscle pains etc. My ferritin is 22 (11-307) but doc says not a problem & as I have digestive issues I'm slow to take iron. I have high folate but don't think that's an issue with the thyroid. No problem with B12 levels.

Would love to hear from anyone who tried alternative therapies.

Both FT4 and FT3 are not optimal for most people. Most people need T4 to be around 15 or 16 and T3 to be mid range, or above for some people.

Your low iron could also be causing the intolerance. I'd be taking Floradix AND Solgar Gentle Iron to get my ferritin up. Dr Friedman (who is a a world renowned endo) recommends ferritin be at least 60: http://www.goodhormonehealth.com/Iron%20Deficiency%20and%20Fatigueaug06.pdf.

Galbin

cltt97 wrote: »

Don't get too excited yet, this is the exception rather than the norm. Most of us find that we finally stop putting on weight when starting treatment, but it doesn't really fall off. Think this is only the second time round that someone on this thread mentioned this type of weight loss!

I have lost 1 stone, 1 lb over the course of seven months just from switching to T3 only. I was on natural thyroid before this and while it stemmed the tide, I couldn't lose weight at all even when I developed an eating disorder!! Now I am free of my eating disorder and just eat a gluten free healthy diet. I do not diet, yet I have lost all this weight. Not to mention no longer being FREEZING all the time like I used to be.

So I do believe that weight should naturally regulate itself when you find the right thyroid hormones for you. I am only a few pounds away from my pre hypo weight.