thyroid misery

handbagmad

100 not sure if its micro/ milligrams, thing is I don't think my GP is how do I say up to date in terms of knowledge about this.

She‘s really nice and all but Im gettin nowhere!

My cholesterol is shocking 8.1 from 5.8 this time last year!

cltt97

@roadhouseblues - yes I got terrible wrist problems, I could hardly type... apparently it's that the lymph doesn't flow as well as it should and can cause joint inflammation. For me this was temporary and went away by itself again eventually. I sometimes also get pain at the inside of my heel, again that went away by itself once my dose was adjusted. I also get swollen legs, especially when it's really hot... but also not all the time..
Regarding the blood test, yes ask your GP to put them on the form and add folic acid to the lot.

@handbagmad - ask for your exact results, I have found in the past that some GPs are totally out of sync with what's normal and they think as long as your TSH is >5 you're grand! So ask for your TSH and FT4 (free T 4) results which is what they typically test for thyroid function and also suggest that maybe you should be tested for TPO antibodies to see if there is an autoimmune disease present. It could be that they put you on eltroxin assuming that your thyroid underactivity was transient and would go away again (was this after pregnancy by any chance?).

redcatstar

Either doc puts you straight back on medication or find another doc, you should never been taken off!!!!!!

handbagmad wrote: »

Hi all, im lookin for advice based on your experiences.
I was on eltroxin a few years back but taken off it after 6 months.

Im going out of my mind. Im so so tired fatigued, brain fogged and forgetful. Im also suffering horrid joint pain and excessive like sweating & burning up.

My cholesterol is also high, im overweight but don't have the energy to do anything about it other than watch my diet.

My GP has said my last two blood tests are "borderline" one slightly over, one under.

Im due back to her Thursday. I feel like im banging my head of a brick wall.

handbagmad

redcatstar wrote: »

Either doc puts you straight back on medication or find another doc, you should never been taken off!!!!!!

thanks im afraid I may have to talk up straight for myself.
I've been doing a lot of research on this and tbh I know more from google and this thread than gp knows.

Im just sick of it. A lot of what's going on with me health wise and mental health is tracing back to thyroid problems.

RoadhouseBlues

cltt97 wrote: »

@roadhouseblues - yes I got terrible wrist problems, I could hardly type... apparently it's that the lymph doesn't flow as well as it should and can cause joint inflammation. For me this was temporary and went away by itself again eventually. I sometimes also get pain at the inside of my heel, again that went away by itself once my dose was adjusted. I also get swollen legs, especially when it's really hot... but also not all the time..
Regarding the blood test, yes ask your GP to put them on the form and add folic acid to the lot.

Cheers cltt97. I will have to write out a list of what I need tested so I can bring it to the doc. Now I have another stupid question. But I'm being honest here.

What if the doc asks me why I want this information. I mean its all gibberish to me. So what will I be doing with this information. I need to be able to give an intelligent response, in case they ask. Or else they will just tell me I don't need them. Thanks for all your help.

RoadhouseBlues

handbagmad wrote: »

100 not sure if its micro/ milligrams, thing is I don't think my GP is how do I say up to date in terms of knowledge about this.

She‘s really nice and all but Im gettin nowhere!.

My cholesterol is shocking 8.1 from 5.8 this time last year!

I think they were mad to take you off it. Your cholesterol sounds high alright. They told me that anyone with a thyroid problem will naturally have high cholesterol. They just told me to cut out all the rubbish in my diet. Well be the feck. They must want me to eat nothing but dust.

I used to have a toasted cheese sandwich every night. They said quit cheese.

I had 1 pkt of choc chip cookies per week. They said quit them.

I would have a multibag Hunky Dories per week:). They said quit them.

I drink plenty of water and I walk or cycle every day. Now I don't go real mad or anything but I still get out and about.

So I quit all the above out of my diet and after 2 months I went back to see how the cholesterol was. It dropped from 6.5 to a whopping......wait for it...wait for it........6.4. Well feck it all. After me being a saint for 2 months. And it only dropped a lousy 0.1. So I will be honest. I've gone back to what I was eating. Except the cheese. So for me the cholesterol is impossible. I don't know if that was any help to you. That's just how it is for me.

redcatstar

I was told I was borderline for years , didn't question anything then in 2011 bum I didn't even know my name my TSH was greater than 125 and FT4 none. I was out of work for 7 months and don't remember much ,my cholesterol had gone up to 10.8 . Ask for numbers anything above TSH 3 and I'm in trouble , tell doc you want antibodies test, TSH FT4 vit D B12 , go onto internet and look up stop the thyroid madness. Good luck

RoadhouseBlues wrote: »

cltt97 wrote: »

@roadhouseblues - yes I got terrible wrist problems, I could hardly type... apparently it's that the lymph doesn't flow as well as it should and can cause joint inflammation. For me this was temporary and went away by itself again eventually. I sometimes also get pain at the inside of my heel, again that went away by itself once my dose was adjusted. I also get swollen legs, especially when it's really hot... but also not all the time..
Regarding the blood test, yes ask your GP to put them on the form and add folic acid to the lot.

Cheers cltt97. I will have to write out a list of what I need tested so I can bring it to the doc. Now I have another stupid question. But I'm being honest here.

What if the doc asks me why I want this information. I mean its all gibberish to me. So what will I be doing with this information. I need to be able to give an intelligent response, in case they ask. Or else they will just tell me I don't need them. Thanks for all your help.

RoadhouseBlues

redcatstar wrote: »

I was told I was borderline for years , didn't question anything then in 2011 bum I didn't even know my name my TSH was greater than 125 and FT4 none. I was out of work for 7 months and don't remember much ,my cholesterol had gone up to 10.8 . Ask for numbers anything above TSH 3 and I'm in trouble , tell doc you want antibodies test, TSH FT4 vit D B12 , go onto internet and look up stop the thyroid madness. Good luck

Cheers Red. God I never heard of anyone with 10.8 cholesterol. That's mad. I'm a worrier so I would have been fecked. Did you ever get it down, and do you think was it your diet. Also I'm on Eltroxin 150. Are you on it too. Thanks to you and all the others here for the help and advice btw.

redcatstar

RoadhouseBlues wrote: »

redcatstar wrote: »

I was told I was borderline for years , didn't question anything then in 2011 bum I didn't even know my name my TSH was greater than 125 and FT4 none. I was out of work for 7 months and don't remember much ,my cholesterol had gone up to 10.8 . Ask for numbers anything above TSH 3 and I'm in trouble , tell doc you want antibodies test, TSH FT4 vit D B12 , go onto internet and look up stop the thyroid madness. Good luck

Cheers Red. God I never heard of anyone with 10.8 cholesterol. That's mad. I'm a worrier so I would have been fecked. Did you ever get it down, and do you think was it your diet. Also I'm on Eltroxin 150. Are you on it too. Thanks to you and all the others here for the help and advice btw.

redcatstar

Yes its down to 4.2 , it was that high because of thyroid, I'm 16 st though meds aren't working on my metabolism I'm on 125 eletroxin

lovelystuff

Just wanted to jump in here guys, i too was told I was borderline for years (8 years of torture) and as a result missed out on a lot of my late teens to mid twenties! I was also put on medication for 2 months (eltroxin) and then taken off it because my gp was incompetent. Now I'm on 125 a day and have my ups and downs, but getting seen by my endocrinologist was a life changer. It's private so it's 180 Euro but I have only had to pay that once, everything else we do is by phone or fax. I'll prob see her once a year at 180 Euro. Please don't be fobbed off,it's a huge regret of mine that I suffered for so long. I recommend everyone should save up and go private it's a worthwhile investment.

cltt97

Well, it is generally known that the Irish population (especially women) suffer from certain nutrient deficiencies. The most up to date Irish National Nutrition Survey from 2011 confirms this :
"Vitamins and minerals Intakes of most vitamins and minerals were adequate in the adult population. Important sources of vitamins and minerals were dairy products, meats, vegetables, potatoes, fish, eggs, fruit, breads and breakfast cereals. Among 18-64 year olds, there was a a significant prevalence of inadequate intakes of vitamin A and calcium (in women) and a substantial proportion of the population had low vitamin D intakes. Among women of reproductive age there was a significant prevalence of inadequate intakes of iron and few women complied with the recommendation for daily supplemental intake of folic acid for the prevention of neural tube defects in infants. Among adults aged 65 years and over, in addition to low intakes of vitamin D, there was a significant prevalence ofinadequate intakes of vitamin A, calcium, vitamin C, folate and vitamin B2." (source http://www.iuna.net/wp-content/uploads/2010/12/National-Adult-Nutrition-Survey-Summary-Report-March-2011.pdf).
But we are not even the average population, most of us here have an auto-immune disease. most of us are overweight - which has an impact on iron absorption. Vitamin D has been stipulated to be linked to development of auto-immune disease.
If you read through this entire thread you will not find one person who reported their iron and D (and a lot of B Vit) that were in the optimal range, so it is very common.
Hypothyroidism also interferes with fat metabolism, ergo the high cholesterol and high triglycerides typically. It also has an impact on kidney filtration and typically you have an elevated ESR due to the inflammatory process of the autoimmune disease.
I can more or less tell the state of my thyroid by looking at my triglycerides and my kidney filtration rates!

handbagmad

So thought id update.

Went to gp this morning, TSH levels 60?
Put on 50 mg eltroxin
Low b12 levels so weekly shots.

Bloods to be repeated 2 months time.

Also cholesterol a whopping 9.3!

cltt97

Lovely! TSH should be 0.3-3 ..... mind you mine was >100 when I was diagnosed. Well at least now you have a definite diagnosis!

handbagmad

cltt97 wrote: »

Lovely! TSH should be 0.3-3 ..... mind you mine was >100 when I was diagnosed. Well at least now you have a definite diagnosis!

yeah I personally still don't understand it all with the blood levels ECT. Gonna do some research.

Add this to the crohns disease, should be fun!!!!!

cltt97

You never know, the Crohn's might improve a bit with proper thyroid meds. just don't expect miracles, thyroid related symptoms can take up to a year to come right again.... it's a condition that creeps up on you very slowly, so equally takes ages to come right again. Although most people experience this type of energy bursting euphoria when they fist go on the meds. Typically only lasts a short time and then ebbs off again though...

Amazingfun

This gal has crohns. I am a big believer in the AIP diet and she has had some success with it too

http://gutsybynature.com/category/crohns-disease-2/

lovelystuff

So after feeling really dreadful for a few months, turned out my tsh was way up again so my dose was increased. I had my usual 2 weeks of feeling worse as I adjusted to the new dose, then maybe 1.5-2 Good weeks now I feel awful again. I think it's time for armour, although I'm worried about starting from scratch with that! Feeling pretty upset and frustrated at this stage (2.5 years after starting eltroxin!)

Amazingfun

You know where I stand on it Lovelystuff: I hated eltroxin. I only lasted 8 months on it and am forever grateful I got off it and on to NDT.
I've been on it now for over a year and doing pretty good. I admit I could be getting blood tests more often, but truthfully, treating by symptoms seems to be working well for me so far.

lovelystuff

Thanks amazingfun. Until now eltroxin has always worked for long periods, then I'd have a few relapses a year but now I feel like it's not working anymore. Is it a big transition to armour? Even upping my dose of eltroxin always makes me feel terrible for a few weeks so I'm nervous about switching altogether! Thanks for your reply and support!

Amazingfun

I felt better within days, although it did take a few months before I got *optimal*. I feel it's worth it, but only you can decide. Good luck!

lovelystuff

Amazingfun wrote: »

I felt better within days, although it did take a few months before I got *optimal*. I feel it's worth it, but only you can decide. Good luck!

Thanks I've a message left with my endo so hopefully I'll get sorted soon! Thanks again fingers crossed!

Staplor

lovelystuff wrote: »

Thanks amazingfun. Until now eltroxin has always worked for long periods, then I'd have a few relapses a year but now I feel like it's not working anymore. Is it a big transition to armour? Even upping my dose of eltroxin always makes me feel terrible for a few weeks so I'm nervous about switching altogether! Thanks for your reply and support!

I felt better within days, I went from being a cranky, moody, tired, pain in the ass, back to my own self. My concentration levels improved hugely too, I'm now able to work full time, have a family life and study at night. It's like a wonder drug (for me anyway).

lovelystuff

Amazing to get such good feedback it's giving me hope! How long did you both wait before going on armour? I'm on eltroxin 2,5 years,it works for a while then I feel bad again. Does it need more time or should I change to armour? Thanks again!

Amazingfun

I would switch in a heartbeat. I mean do you really want to go through another 2.5 years of this? Like I said, it's up to you.
I was absolutely miserable on eltroxin, it only made me feel better for about a month, right in the beginning after diagnosis, but it was crap for the remaining 7 months during which I gained another yet stone in weight.

I can't say enough about NDT. Like Staplor said, it's my wonder-med

Ps: I don't take armour btw, but I am on NDT. I can PM you info on it if you want

harr

A quick update on my thyroid nodules,got my ultra sound and ct scans done a few weeks back and today I had appointment with ENT specialist who was in contact with a endocrinologist regarding my problems.
The scan shows that I have a total of 6 nodules the largest is 3.8 cm on left and another 2.5 cm on the right and the rest in various locations. One small one they are a bit concerned about but it's in behind one of the larger ones so will be difficult to get a biopsy done.
So because they are growing still and are now noticeably larger to the naked eye plus some pressure on my throat and oesophagus at this stage they have recommended a total thyroidectomy :eek:
Was not expecting that news today,but as they said they are now to large to ignore and if left untreated there would be a good possibility of them becoming cancerous in the next few years.
They have left the decision to me but they are highly recommending surgery as is my GP. They will leave it till after Xmas but want it done the first week in January.
They won't know about any of them been cancerous till tests are carried out afterwards.
Now the surgery does not really bother me as such,it's the compilations afterwards that worry me..living without my thyroid and what that might mean plus there is the possibility of damage to the voice box and the scar it leaves.
Any out there have this procedure done,I could do with some real life experience at this stage

dollydishmop

Hi Harr

I had a TT in 2010 for similar reasons, I had a multinodular goitre, that was growing and slowly crushing my windpipe.
I might not be the best person to hear from, in that I've been very lucky having had no immediate, or long-term, complications since.
I'm still on the dose they put me on post-op (125mg levothyroxine) and my levels have been super stable ever since (after being totally wild and out of control in the 3-4 yrs prior to the TT).
My calcium levels never dipped, and my vocal chords were mostly unaffected. I think I might have lost some of my top range when singing, but heck I'm only a car/shower singer, and actually I think as the years pass by I'm finally hitting the higher notes in the shower again now :P

My scar was wider that my surgeon hoped it would be, he promised me a 1½-2 inch straight line, but my goiter didn't want to leave and took a lot more persuading than he anticipated. But he still did a damn fine job, and if I choose to hide it, it sits nicely at the base of my throat/neck and a short necklace almost hides it completely. To be honest, nowadays, I rarely bother trying to hide it, and nobody notices it anyway! I didn't use bio-oil, although many swear by it, I just kept it well moisturised (bog standard face moisturiser), and kept it out of direct sunlight for the first year, light silk scarves and polo necks for the first few months, whilst it was healing, then sunblock.

Yup the thoughts of living without a thyroid for the rest of my life, and being totally reliant on medication, is a sobering one at times, but really, its OK, and if I was to go through it all again I'd make the same decision. RAI never even entered the game, and when I developed TED, the option of having RAI was taken away anyway. Hand on heart, my quality of life is so much better now than it was prior to the op... and my husband has promised me that if the zombies take over the world, his first, and most important, job is to raid & loot all the local chemist shops to stock up on levo for me haha! But hey, all joking aside, the alternative option of continuing life with a toxic thyroid gland which was actively harming me, wasn't an option at all.

One thing my endo, and the ENT surgeon, impressed on me in the run up to the op was that the closest they could get my levels to *perfect* at the time of the op, the less of a shock for my system to recover from when the thyroid gland was removed. For me this meant getting my bloods done weekly in the last few weeks prior to the op, and them making teeny-tiny tweaks in my Carbimazole dose (I was mostly hyper before my TT) so that I hit the sweet spot bang on for my op. Ask them about this!! And see that they are willing to work towards this, because I think it really did make a huge difference in my immediate recovery.

Ask all the questions you can think of to your medical care team, and do all the research you can in books, online, from fellow thyroid folks etc...the decision is (and must be) yours and yours alone. But promise me, DON'T Youtube the procedure before hand, trust me, just DON'T :eek::eek::P

Best of luck with whatever you decide.

jozi

I posted here some months ago when they found my thyroid to be a bit under active but not enough for medication. I can't exactly remember how it came about the find I was having thyroid problems but I think it might have been from a cough or high iron I was tested for.

Anyhow, I was going to post up to say I had a scan last week on my throat and thyroid and that they found 4 nodules, the largest 2.5x1.5, which might have had something to do with me coughing from time to time. A few people also commented on my neck being swollen the past year, probably also related.

I'll know this week how they are going to proceed further. I was abit shocked reading the above that it can be so drastic. I was told not to worry anyway. I'll be letting an eye on the thread for more about the above

harr

dollydishmop wrote: »

Hi Harr

I had a TT in 2010 for similar reasons, I had a multinodular goitre, that was growing and slowly crushing my windpipe.
I might not be the best person to hear from, in that I've been very lucky having had no immediate, or long-term, complications since.
I'm still on the dose they put me on post-op (125mg levothyroxine) and my levels have been super stable ever since (after being totally wild and out of control in the 3-4 yrs prior to the TT).
My calcium levels never dipped, and my vocal chords were mostly unaffected. I think I might have lost some of my top range when singing, but heck I'm only a car/shower singer, and actually I think as the years pass by I'm finally hitting the higher notes in the shower again now :P

My scar was wider that my surgeon hoped it would be, he promised me a 1½-2 inch straight line, but my goiter didn't want to leave and took a lot more persuading than he anticipated. But he still did a damn fine job, and if I choose to hide it, it sits nicely at the base of my throat/neck and a short necklace almost hides it completely. To be honest, nowadays, I rarely bother trying to hide it, and nobody notices it anyway! I didn't use bio-oil, although many swear by it, I just kept it well moisturised (bog standard face moisturiser), and kept it out of direct sunlight for the first year, light silk scarves and polo necks for the first few months, whilst it was healing, then sunblock.

Yup the thoughts of living without a thyroid for the rest of my life, and being totally reliant on medication, is a sobering one at times, but really, its OK, and if I was to go through it all again I'd make the same decision. RAI never even entered the game, and when I developed TED, the option of having RAI was taken away anyway. Hand on heart, my quality of life is so much better now than it was prior to the op... and my husband has promised me that if the zombies take over the world, his first, and most important, job is to raid & loot all the local chemist shops to stock up on levo for me haha! But hey, all joking aside, the alternative option of continuing life with a toxic thyroid gland which was actively harming me, wasn't an option at all.

One thing my endo, and the ENT surgeon, impressed on me in the run up to the op was that the closest they could get my levels to *perfect* at the time of the op, the less of a shock for my system to recover from when the thyroid gland was removed. For me this meant getting my bloods done weekly in the last few weeks prior to the op, and them making teeny-tiny tweaks in my Carbimazole dose (I was mostly hyper before my TT) so that I hit the sweet spot bang on for my op. Ask them about this!! And see that they are willing to work towards this, because I think it really did make a huge difference in my immediate recovery.

Ask all the questions you can think of to your medical care team, and do all the research you can in books, online, from fellow thyroid folks etc...the decision is (and must be) yours and yours alone. But promise me, DON'T Youtube the procedure before hand, trust me, just DON'T :eek::eek::P

Best of luck with whatever you decide.

Thanks for the great reply ,a lot of information there for myself and anyone else in the same position. Getting my bloods right before the op will be something I will ask them.
I will talk to my GP again and will research the pros and cons of the op.
Thanks again.

Wyldwood

I don't know how relevant my information is but I had a thyroidectomy in my teens over 40 years ago. I have a six/seven inch scar that I hid under high collars for many years in my late teens and twenties. Nowadays it doesn't bother me at all.

I was very unwell before the surgery as I was very hyper so had no choice but to have it out. The surgery was no bother but I did suffer from some vocal problems for a while and had to be careful of not talking too much. I was quite hoarse. Once I was stable on replacement hormone, Eltroxin 100, I had no problems and went on to have 4 healthy children while working full time.

Unfortunately, things have gone pear shaped in recent years but that's another story.