thyroid misery

marymarcy · 31-03-2012 12:03pm

Hi all, just posting this in case it might be some help. I'm based in Waterford.

I was diagnosed hypothyroid in August 2009 after 6 months of feeling miserable and am currently on 100mg Eltroxin Mon-Thurs and 125mg Fri-Sun since last September. However i have only started feeling better since endocronologist checked my vitamin D levels, found they were low (24) and prescribed injections and supplements. Have had 3 injections and daily supplementation (calcichew x2) since November and feel so much better. Still don't always have wonderful energy but dont feel tired, cold, miserable, brain fogged, weak muscled.

Just had another visit to Endo yesterday (Clonmel), new man has taken over from last Endo, and having re-tested Vitamin D, am up to 57, but he wants me between 100 and 150, so instead of injections am now on Vitamin D orally (D-Pearl, Pharma Nord, i get them in McCauleys chemist but assume general availability) and he seems to think an adequate vitamin D level will solve lots of problems, including mild depression (present long long before thyroid diagnosis) and weight gain.

So maybe its something some of ye would like to get checked and hopefully it will help, i know this is not the first time Vitamin D has been mentioned here. I certainly feel human again which is a great novelty after a few years of misery - was getting nowhere with longtime GP so changed in Jan 2011 and new GP immediately referred me to Endo. So it has been a bit of a struggle, not as long or difficult as some of ye i'm well aware. I imagine its not just the Vitamin D, also i'm probably finally on the correct level of Eltroxin, but i get an amazing feeling of wellness after the Vitamin D injections. The Endo has also said if i still feel unwell after my Vitamin D is normal, we can try T3 only.

So thats my experience, i hope its helpful, as all your posts have certainly been helpful and informative for me, especially cltt97.

All the best!

cltt97 · 31-03-2012 12:05pm

I am having my Vit D tested for the first time and I cannot wait to see what comes back! Should know by Thursday next week....

marymarcy · 31-03-2012 12:12pm

I was talking to a work colleague about it as she is feeling tired and despite genuine efforts losing no weight, so she had hers tested and was 33. I imagine most of us in Ireland are on the low side. The Endo actually said he was taking Vitamin D himself as he is from Pakistan and i think he said its harder the darker your skin or something, i can't quite remember, but he said he lost 7kgs without much effort and he is buzzing with life, an excellent advertisement for it! he told me to take 3 D Pearl capsules (they are tiny!) per day, i think thats about 3000 units (whatever the name of the units is!) and come back to him in 8 weeks. the capsules are over the counter and cost about €13 for 80. i will post again with any developments, it would be great if such a simple thing solved even some of our problems!

chessguy · 31-03-2012 6:29pm

Yes, Vitamin D does miracles it is akin to a hormone in many respects affecting many aspects of ones health including the Endocrine systems, (Thyroid Diabetes etc..)

The units are IU units (international units )

I have mentioned the importance of these Vitamins /minerals in my previous posts, ,vitman D magnesiun in chelated form vitamin B12 these 3 are CRITICAL if one has endocrine issues and lacks these , the medication cannot work optimally, as they work in sync sharing pathways.

Selenium is also critical a couple of Brazil nuts daily will cover this .

Virgin coconut oil works on the metabolism, to speed it up, it is also antiviral antifungal anti bacterial,
proven so in many studies , just google it.

And its great for the thyroid,hypo or hyper.

Plain old hydrogenated coconut oil will NOT do it needs to be cold pressed unheated and unbleached.

Vitamin D is a fat soluble vitamin best taken in liquid form and it needs to be type D3 in oil, for optimal absorbtion. NOT D2
Vitamin B 12 is best taken as B complex, as it contains the family of vitamin b vitamins.

I will share a list of supplements that have made big changes on my health.

I have diabetes type 2 and came of all medication and use a strict diet ,I have been this way 3 years,

For hypothyroidism I take Eltroxin but this will be reviewed soon,(T3)(Natural thyroid Medication.)

People with Endocrine issues Diabete and thyroid issues, do not absorb all the nutrients from food , the gut immunity/absorbtion is not otimal.
So supplements are required.

I am Very particular regarding my supplements ,regarding quality and potency.

I use no sugar I do not use the cheap chemcal substitutes either but the pure natural product Stevia

not the stuff in the supermarket that is full of chemicals, and diluted. branded as splenda etc

Real stevia has no carbs.And nothing mixed in.IT is extracted from the leaf of a plant , that has been used for thousands f years.

I purchase from iherb.com as I can compare products in great detail and review.. The prices seem to beat any like for like product. http://www.iherb.com/

I usually choose the shipping DHL option it takes around 3 days.

Even if you do not buy there it is great to compare products in detail, then purchase locally if it is cheaper/convenient.

If you have not purchased from them before you can use this cupon code SOD876 you get 5 dollars of your first order , or 10 dollars of if you spend 40 dollars.

This is what I use if you see any thing better or produced better please let me know why you think it is a better product.

Vitamin D3 drops, Nature's Answer, Vitamin D-3 Drops, 4000 IU, 15 ml (NTA-26132)

Fish oil Nature's Answer, Liquid Omega-3, Deep Sea Fish Oil EPA/DHA, Natural Orange Flavor, 16 fl oz (480 ml) (NTA-26137)

this is nitrogen flushed not like the cheap stuff in seven seas etc.And it is potent not diluted.
It does not taste off like cheap fish oils.Nitrogen flushed basically means it does not oxidise (go off, as oxidised fish oil is actually bad for you.

The EPA DHA in the fish oil is optimal and more potent. then the product calleds Morepa /Mordha

Jarrow Formulas, B-Right, 100 Veggie Caps (JRW-01006) this is vitamin B COMPLEX, a quality product.

Nutiva, Organic Extra Virgin Coconut Oil, 54 fl oz (1.6 L) the best coconut oil I have ever used.

Natural sugar with out the carbs. Wholesome Sweeteners, Inc., Organic Stevia, All-Natural Sweetener, 75 Individual Packets, 1 g Each

Now Foods, Healthy Foods, Certified Organic, Cocoa Powder, 12 oz (340 g) (NOW-06672)

This is pure cocoa powder undutched, so it is the real thing . try this with cream hot water and stevia.
And it is super full of antioxidants.

the paragraph below is from

http://www.peakhealthadvocate.com/1061/chocolate-shown-to-improve-cholesterol-levels-naturally-in-high-risk-adults/

Chocolate and Your Heart <<< ##

One of the biggest benefits of cocoa is its antioxidant properties. Thanks to its high concentration of flavonoids, compounds found in thousands of plant-based foods, chocolate has a rather impressive ORAC (oxygen radical absorbance capacity) score.

ORAC is a commonly accepted measure of the antioxidant potential of a food. Some of the more recognized high-ORAC foods include blueberries and green tea. But chocolate outshines them all.

Chocolate boasts an impressive ORAC of 13,120 per 100 grams, as compared to blueberries (2,400 per 100 grams). Plus, it beats green tea four times over, and just two tablespoons of cocoa powder has double the ORAC of a 140 mL glass of red wine.[1]

It is cocoa’s flavonoids that give it this antioxidant boost. Plus, cocoa has one of the highest concentrations of magnesium of any food. In addition to building bone and relaxing muscles, this mineral is a critical component of heart health.

Sure hope this list helps as looking into vitamin/ comparisons is extremely time consuming.

goodluck
chessguy

Equanimity · 02-04-2012 10:20pm

Hi all

Can anyone recommend a very good Endocrinologist in Dublin? MY GP said she's never heard of anyone having a good experience with one but I am really desperate for answers having been so unwell for over a year now. She will refer me but I need to find one myself as she doesn't know of any.
I hear there's a good one in Vincents however when I look at the listing there are four there!
I'd appreciate if anyone who is really happy with theirs could PM me?

Thanks so much

E

RubyGirl · 04-04-2012 10:26pm

Have underactive thyroid since Dec and take 75 eltroxin 50 one night and 75 the next.

Prob something totally unrelated but does anybody have problems with their skin, I have really bad acne. Sore solid lumps not pinples you used to get when you were a teenager.

Wyldwood · 06-04-2012 7:26pm

Happy Easter fellow sufferers.
I had my appointment with the cardiologist & the good news is that my heart is perfectly healthy. He has put me on a low dose of beta-blockers to try to correct the palps as I must increase the dose of Eltroxin to 50 every second day. I'm feeling quite well at the moment but levels are at 7.7 so need to get it down. Fingers crossed I don't go hyper again now.

Hope everyone is feeling well.

ChewChew · 07-04-2012 3:50pm

RubyGirl wrote: »

Have underactive thyroid since Dec and take 75 eltroxin 50 one night and 75 the next.

Prob something totally unrelated but does anybody have problems with their skin, I have really bad acne. Sore solid lumps not pinples you used to get when you were a teenager.

I was diagnosed underactive in March 2005 so I am 7 years on meds now. And I have really bad skin. But I was put onto Dianette (ocp) about 3 years ago and it has done wonders for me. I have a little scarring but no acne anymore. Certainly worth looking into if you are in a position to take ocp.

Corruptedmorals · 09-04-2012 1:32am

Has anyone broken out in hives and linked them to autoimmune hypothyroid? The last time I had hives was years and years before diagnosis so I wonder is it a symptom I haven't had yet. Google tells me there is a connection but I feel it would tell me that if I put in 'hypothyroid+ gangrene' also. Just seeing is it actually common.

cltt97 · 09-04-2012 10:26pm

Wyldwood wrote: »

I had my appointment with the cardiologist & the good news is that my heart is perfectly healthy.

Now that is great news!

cltt97 · 09-04-2012 10:30pm

Corruptedmorals wrote: »

Has anyone broken out in hives and linked them to autoimmune hypothyroid?

Well, I developed this type rash that comes and goes, it's only on my arms - started on the upper arms but wandered down to just below my elbows. Seems a bit like a mix between eczema and psoriasis. Completely goes with the sun. Certain foods seem to aggravate it. Doesn't itch either.

Never had any kind of problems with my skin ever before "thyroid life", so defo a thyroid related thing with me....

redcatstar · 10-04-2012 10:41pm

hi all,
was diagnosed july 2011 was very sick have no real memory of july,aug ,sept, oct
my 1st results were

TSH GREATER THAN 100
T4 WAS BASICALLY NON EXISTANT
i couldn't walk ,halluinations,pain everywhere and cramps etc etc
was put on 100mcg,went back to work mid nov , have not been right or should i say the person i was before diagnosed .

dec results
TSH 1.19
T4 13.6
FERRTIN 7.3
I felt nearly normal apart from the muscle pains /cramps and 4st in extra weight[at least i could work and stay awake when i got home]

then came feb started falling asleep as soon as i got home, some morns i couldn't get up,pain all down left side arm, leg and hip area, couldn't bend down and found it hard to go from one position to another[going backwards instead of getting better] went to gp shes brilliant,did bloods

march results
TSH 4.38
T4 12.9
FERRTIN 6.9
TOTAL IRON PROFILE 5.9[ don't understand this]

gp left me as i was cause i had an app with the endoc,wow how shocking when i seen him ,not interested at all ,no help, advice and listening skills[none]
gp upped my meds from 100mcg eletroxin to an extra 25 mcg twice a week[ thank god for good gp's]

but i still feel terrible, need to understand why and any help with undering the levels would be great, also a good endoc[understand prob can't give names but hosiptal or area would be helpful
many thanks

Wyldwood · 11-04-2012 11:15am

Redcatstar, welcome to the thyroid thread!
You have been to hell and back you poor thing. You don't say what part of the country you're in so hard to recommend anyone. I'm in Cork & recently attended an endo who seems to be quite good, however, often a good gp will be as effective as an endo.
The normal range for thyroid stimulating hormone levels (TSH) varies from lab to lab but somewhere between 0.4 and 4 is accepted by CUH here in Cork. T4 (the reading for available hormone in your blood) is 12 - 24. Your initial reading shows you were seriously underactive. Your levels have come down with the meds so that's good. However many sufferers find that how well you feel doesn't always go by normal numbers. Bear in mind that it can take weeks to feel better when meds are adjusted & after a while your body may need another adjustment of dosage to find the right level. It is a miserable feeling.
There are quite a few tests that you should request. Have you been tested for antibodies, cortisol, coeliac? Have you had Free T3 tested? Has Hashimotos been suggested?
Avoid anything containing soya as this inhibits absorbtion of thyroid meds. My endo told me to take my tablet half an hour before food so I take it first thing after waking before I get out of bed.
There are some very well informed sufferers who post in this thread so I'm sure you'll get lots of more detailed advice.

redcatstar · 11-04-2012 12:38pm

hi whldwood,
thanks for the reply i live in sligo, endoc won't do any of those tests but did the cortisol under duress[sorry am a terrible speller] have to say i'm starting to feel like i did last july lastest symptom last night was acid reflux vomiting in my sleep again so horrible ,i really don't know what to do am on holidays at mo, back to work monday, hope i start feeling better soon, but it is so nice to talk to someone who knows how you feel so many thanks

cltt97 · 11-04-2012 2:00pm

Redcatstar - your ferritin levels are shocking - if the results are in micrograms/L. The normal range is somewhere between 20-400 or thereabouts, varies by hospital (St James' hospital in Dublin lists 23 - 393 µg/L). Mine are usually just below 50 and I've been told I should try and get them up.
I'm not sure what the total iron profile refers to either - do you have the units, does it say anything else?
I think you need further tests, like a full blood count that shows haematocrit and red cell volume etc... I would also get tested for Vitamin B12, bone and kidney profile, liver function test....
Your symptoms sound mad, and I'm not sure that they can all be attributed to the thyroid, so I think you urgently need to get more blood tests done!

cltt97 · 11-04-2012 2:04pm

Question to all:

Those of you who take T3 (Tertroxin) - can you tell me where you're getting it and how much you pay for it? I am now adding a tiny bit to my mix and I almost fell over at the price the pharmacy gave me - it also took them about half an hour to come up with the price, think it's the first time they've dispensed it to someone.....
Many thanks!

redcatstar · 11-04-2012 2:49pm

hi citt97
no i don't know what when the bloods are done as in micrograms/l etc. but am getting more bloods done today as i rang gp and told her how i felt plus last night i spent the night having acid reflux vomiting in my mouth and nose thats how i found out about thr thyroid in july,so i will ask , am getting tsh t4 and b12 done but i'm hoping nurse wil do vit d as well,
i just know endo said ferrtin was low 6.9 am taking ferrograd with vit c
but i don't feel right at all and feel like crying:(

Ms White · 11-04-2012 9:42pm

I posted earlier up in this thread about how I felt/ feel I have a lot of the symptoms of hypothyroid but got boods done and doc said my TSH of 2.5 was spot on so I def didn't have a thyroid problem.

My main problem is that I have muscle pain in various parts of my body almost constantly- it moves around but I have a pain somewhere nearly all the time: hands, wrists, fingers, toes, ankles, back of thighs, torso to name a few places. Add to this desperate tiredness and lack of energy that I never had.

He has referred me to a reumatologist despite me saying about the thryroid again he really disagreed with me and said he thought the reumatologist was the right route.

Anyone else here get sent to reumatologist and find it was really a thyroid problem? Or anyone here like me who thought they had a thyroid problem but it did turn out to be reumatology related?

The bloods the GP did covered arthritis and joint inflamation and they also came back clear so I don't know why he's so convinced I need to see a reumatologist not an endocrinologist.

Bit of a rambling essay there. Anyone any advice for me?

Equanimity · 11-04-2012 10:54pm

Ms White wrote: »

I posted earlier up in this thread about how I felt/ feel I have a lot of the symptoms of hypothyroid but got boods done and doc said my TSH of 2.5 was spot on so I def didn't have a thyroid problem.

My main problem is that I have muscle pain in various parts of my body almost constantly- it moves around but I have a pain somewhere nearly all the time: hands, wrists, fingers, toes, ankles, back of thighs, torso to name a few places. Add to this desperate tiredness and lack of energy that I never had.

He has referred me to a reumatologist despite me saying about the thryroid again he really disagreed with me and said he thought the reumatologist was the right route.

Anyone else here get sent to reumatologist and find it was really a thyroid problem? Or anyone here like me who thought they had a thyroid problem but it did turn out to be reumatology related?

The bloods the GP did covered arthritis and joint inflamation and they also came back clear so I don't know why he's so convinced I need to see a reumatologist not an endocrinologist.

Bit of a rambling essay there. Anyone any advice for me?

Hi Ms White
I am actually in the same boat as you. I am unwell for over a year now & going bananas trying to get answers - am CONVINCED there's a Thyroid problem which is apparently common enough after pregnancy but can get worse if untreated.

I was seeing a very smart Chiropractor who was helping me with my back pain. he was v supportive & told me I needed to get all bloods done by gp and then was at a fork junction - seeing a endo or a rheumtologist.
I showed him my bloods which GP said were all perfect - bar low iron.
He said there were a couple of things that were little indicators e.g. ferritin was 8, I tested positive for anti nuclear etc.
Anyway he was great but not a doc so he couldn't do anything. Pity he wasn't my GP.
So GP under duress sent me to Rheumatologist who was brilliant - as in she said I have no idea what's wrong with you & will do everything possible to find out. All tests were clear however she treated me just in case for serenegative arthritis. Very heavy medication (had to have bloods done once a month for kidneys) and it takes 12 weeks to work. In mean time I had steroids (helped with joint pain but made me mentally miserable), and other bloods, mri on joints seeking signs of inflamation etc. In the end after all that time & money she resigned to the fact that I have no form of arthritis whatsoever!

I was back with GP and begging to be referred to an endo last week. I was yet again telling her how I feel - why I think I have a thyroid problem & she told me to try antidepressants as maybe my mind needed to relax & tell my body to get better ! hello!!! I said I am not depressed I am pi**ed off! She wasn't listening & took my blood pressure - then again, then again, and 8 tries later she realises that my BP was very high. The month before the same but she said it must be her machine that's wonkey (cos there's nothing wrong with me of course!).

So she then is listening. Had to send me for ECG, chest x-ray and did my bloods as posted above a couple of weeks ago. She said she included thyroid.
all results were fine - I wasn't worried about my heart, I just think BP is another symptom of my illness (possibly thyroid). It's still high - just the systolic so it's systolic hypertension.

I am going to see an endo soon (thanks for recommendations BTW!) & I hope I get answers.
It amazes me how hard it is to get answers. I need a House style doctor how will try to figure it all out.
Apologies for the long rant, I am sure a lot of people here had a few difficulties getting diagnosed or decent help along your journies.

Ms White from my own experience if you can afford it or can manage to, throw your net out if you can - as in I wasted 5 months with one Rheum but should have gone both routes at the same time. Both started with tests so I could have had results from one that told me i was in the right place and then stopped seeing the other. Wasting time is not funny when you are in pain and it's affecting every aspect of your life.

Good luck & keep us posted on how you get on.
PS: I came across a great natural pain relief along the way which worked better than anything I tried & I tried a lot! It's endorphin release therapy - stimulates body's endorphins which is a great pain killer. really effective so PM me if you want details.

redcatstar · 12-04-2012 12:44pm

hi all,
had blood taken yesterday for tsh,t4,b12,vit d and calicum, will post results when i get them
nurse said ferrtin level actually 6.3 but fine she said they meant to be between 4 and 200,
i really don't understand lab differences around the country
chat soon

redcatstar · 14-04-2012 12:26am

hi
tsh results have gone from 4.38 to 5.89 in a month ,
what ,why and how i.m tired ,sore and baffled:eek:

Wyldwood · 14-04-2012 12:33pm

Unfortunately that can happen. Your body gets used to the amount of hormone you're taking and looks for more to satisfy needs. Meds will have to be adjusted until you respond. This is very upsetting as you think you're better for a while until it goes out of tune again. Hang in there thyroid problems are not easy to solve as we all know. I would insist on TPO antibodies beings tested if I were you to rule out Hashimoto's.

cltt97 · 14-04-2012 1:52pm

I also still believe that you need to get your iron up, make sure you take a good iron supplement every day, and not at the same time as the thyroid medication. I would also suggest that you take a good vitamin supplement in general, something like pharmaton. To avoid the acid reflux, stay away from processed starch (white bread, etc) and things like coffee, tea, alcohol.

redcatstar · 14-04-2012 2:48pm

whlywood and citt97
thanks for replying, yes it is upsetting what is hasimotos and tpo antibodies pls, i have been taking ferrograd with vit c everyday for 3-4 months now 5hrs or so after thyroid med, i am also taking evening primrose and menopace which has good vits and minerals , i'm starting to get worried it might be something more serious[ i know this is fear:) i hope] am still waiting on vit d and cortisol results[which were taken about 4.30pm by endoc under duress[think they should be done in morn am i right ,will it make a difference to results] ALSO SOMETHING STRANGE i work in a school and when we get any holidays that seems to be when my blood work goes weird and i seem to fall apart energy wise,
ANY IDEAS ON THIS

Wyldwood · 14-04-2012 7:33pm

redcatstar have a read through these pages by Mary Shoman who is a thyroid sufferer herself
http://thyroid.about.com/

Hashimoto's is an autoimmune disease which attacks the thyroid gland slowly killing it off, your body produces antibodies to defend itself and a TPO (anti-thyroid peroxidase) blood test can confirm the presence of these which would suggest Hashimoto's.

redcatstar · 14-04-2012 9:29pm

Wyldwood wrote: »

redcatstar have a read through these pages by Mary Shoman who is a thyroid sufferer herself
http://thyroid.about.com/

Hashimoto's is an autoimmune disease which attacks the thyroid gland slowly killing it off, your body produces antibodies to defend itself and a TPO (anti-thyroid peroxidase) blood test can confirm the presence of these which would suggest Hashimoto's.

Thank you will look it up2

SarahH2O · 15-04-2012 1:09am

Would love to get some recommendations for a good endo in Dublin too if anyone could help. Have hypothyroid symptoms,high TPO antibodies and multinodular goitre but was told by endo that not a thyroid problem.Also have low ferritin,5 on last test despite a year of iron supplements.

redcatstar · 15-04-2012 8:03pm

we are in same boat in regards the endo, i'm going to try and just deal with my gp ,have you a good gp they get tests done too i know it takes longer, my ferrtin 6.3 and tsh getting higher,everything you mentioned sounds thyroid related, i hear there is a good endo in galway, if you want name and num i'll email it to you if possible

SarahH2O · 15-04-2012 10:35pm

Hi redcatstar,
That wold be helpful if you could,thanks.Luckily have a great GP and am having more tests done shortly.S

_Whimsical_ · 16-04-2012 12:09am

Can I have that name too please redcatstar ?

thyroid misery

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