thyroid misery

cltt97

Hi Deepsurf! Welcome to the club. Having any hormonal illness that does not respond to "standard treatment" is like going on the rollercoaster ride from hell, and one has to educate oneself a lot and try to actively co-manage one's illness. It appears that thyroid symptoms are always looked at in isolation and one's state of health is judged by the thyroid panel being inside or outside what is considered the normal range. But there are so many other factors that, if not in sync, can cause absolute havoc, so it is vital to really learn how the body works and how to interpret tests results - and how to get them in the first place.
Your endo sounds a bit weird alright, ok, it makes sense to check if after removing the gland to see if any gland tissue is still there (that could cause the return of the cancer) but not to check Vitamin D, calcium or thyroid hormone levels at all is a bit dubious alright. I would go looking for a new endo.... or a good GP to begin with, who is willing to run a lot of the bloods that are needed to investigate one's state of health.

redcatstar

my vit d results came back at 34 [norm 75-200 gp said] am now taking vit d 3 1000iu a day, doc sending me to a neurologist[spelt wrong sorry] for the awful pains i have in left arm leg etc ,also sending me for ultrasound on arm as she found small lump.
how would you know if you had hasimotos, what tests would you get

cltt97

Thyroid antibody tests. mainly TPO Antibodies are tested.
Hope all goes well for you, and hopefully there is nothing sinister going on!

Deepsurf

Wyldwood, thank you for your reply. Found this thread very helpful.

I too found it difficult to get Eltroxin last week but my pharmacist rang me today to say they just got a load in so wholesalers must be distributing again. They have 100 and 50 in McCabes in Tesco/Greystones if anyone looking for some.

Deepsurf

cltt97 wrote: »

Hi Deepsurf! Welcome to the club. Having any hormonal illness that does not respond to "standard treatment" is like going on the rollercoaster ride from hell, and one has to educate oneself a lot and try to actively co-manage one's illness. It appears that thyroid symptoms are always looked at in isolation and one's state of health is judged by the thyroid panel being inside or outside what is considered the normal range. But there are so many other factors that, if not in sync, can cause absolute havoc, so it is vital to really learn how the body works and how to interpret tests results - and how to get them in the first place.
Your endo sounds a bit weird alright, ok, it makes sense to check if after removing the gland to see if any gland tissue is still there (that could cause the return of the cancer) but not to check Vitamin D, calcium or thyroid hormone levels at all is a bit dubious alright. I would go looking for a new endo.... or a good GP to begin with, who is willing to run a lot of the bloods that are needed to investigate one's state of health.

Not sure what to do regarding the Endo. I was a private patient but things got expensive so went public and I saw "one of the team" at the last visit. Even my GP thought it was strange they weren't checking my tsh levels. My GP is great and is managing my levels at the moment.

Deepsurf

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.

Hi, Yes I developed acne rosacea - GP thinks it's from the stress of it all. I had acne and then woke up one morning to a boil / cyst on my chin. Just thought - what now! Went to GP and she put me on anti-biotics and not only has it got rid of the boil but also the spots are disappearing too.

ziggy23

I'm currently on 300mg Eltroxin. I'm 28. Everyone I say this to seems to think it's a really high dose?

Deepsurf

ziggy23 wrote: »

I'm currently on 300mg Eltroxin. I'm 28. Everyone I say this to seems to think it's a really high dose?

It does seem pretty high but everybody is different. Do you have any side affects? Did u have thyroid surgery?

ziggy23

Deepsurf wrote: »

It does seem pretty high but everybody is different. Do you have any side affects? Did u have thyroid surgery?

I have no side affects that I can think of, still feel quite tired a lot of the time and cold and my weight is still not great but that's due to a number of things not just the thyroid. No I didn't have any surgery. Might go and get some bloods done soon and try to get to the bottom of this.

cltt97

There is a concept called "peripheral resistance" which means that the cells don't get enough thyroid hormone so in these cases much larger doses of hormone are needed to get a response. I am not suggesting that you suffer from this but it is something you might want to discuss with your doctor. In these cases T4/T3 combination therapy, NDT or T3 have been reported by users to work better for them. Unfortunately, this can't be tested for, and one can only go by symptoms...

frenchmartini

not sure if should be here or not, so here goes.

i've just got my bloods back.
TSH 2.58
T4 14.9
Cortisol at 11am 281.
no FT4 or T3 or antibodies screened.

So, they tell me i'm in normal range YET am symptomatic of many hypo symptoms - weight gain, cold all the time, excessive sleepiness, depression...
i just want to feel well again.

at Christmas i had a horrendous chest infection that bordered on pneumonia. They gave me some steroids and my god, the difference to how i felt. it was fantastic. i felt like the old me. i felt well again thanks to those little steroid pills.

anyway, i feel so ill all the time and nobody is listening to me. I had a partial thyroidectomy in 1996 due to tumors. Am waiting on CT scan for remaining side cos my GP felt several nodules on it.

Ok, maybe i'm not hypo. maybe it's adrenal fatigue.
or maybe those readings are not 'normal' for me?
any suggestions for an alternative practitioner, seeing as mainstream medicine has classed me as normal.

am at my wits end. some days i can barely function with the fuzzy brain, the fatigue etc.

Thanks

cltt97

Adrenal fatigue is not something that mainstream medicine acknowledges, so it will be difficult to get treatment for it. But in any case, I would recommend you get the book "Adrenal fatigue" and educate yourself a bit more about the condition. There are several things one can do to try and figure out if one has it and what to do about it. You could also consider doing a saliva test - this has to be ordered and sent back to the UK. This will provide 4 readings taken during the day which tracks your circadian rhythm. You can find labs on this website. But just a word of caution - webpages written by patients always have to be taken with a certain amount of caution - whilst there is usually plenty of good info, sometimes there are recommendations I would consider dangerous. In any case, I went via the apple clinic to get my test. Once you've armed yourself with more info, find a good doctor, I will pm you with one recommendation.

chessguy

redcatstar wrote: »

my vit d results came back at 34 [norm 75-200 gp said] am now taking vit d 3 1000iu a day, doc sending me to a neurologist[spelt wrong sorry] for the awful pains i have in left arm leg etc ,also sending me for ultrasound on arm as she found small lump.
how would you know if you had hasimotos, what tests would you get

Hi vit D is far too low , you may well need B12 and checked too and ferritin (Iron)

as these work in sync with vit D , 1000iu is going to take years to bring up to a decent level,unless you take sunny holidays often meaning around 4 times a year .

check with your Doc, I expect they would recommend circa 4000 iu daily, in a oil drop.For circa 2 months then a recheck.(blood test)

best to take vit d that is in a oil drop and to take it under the tounge,
just incase your stomach flora has absorbtion issues ,

goodluck
chessguy

chessguy

ziggy23 wrote: »

I'm currently on 300mg Eltroxin. I'm 28. Everyone I say this to seems to think it's a really high dose?

@Ziggy23, 300mg Eltroxin is a large dose , indeed.

have you actually seen an Endo or local GP,?

Did the Endo ever mention T3 medication ( TI-TRE) this is prescribed in Ireland but usually recommended by Endo.


Do you have hashimotos ,?
have antibodies been tested ?

If not get the following tests done, to get the full picture.


Vit D
Vit B12
Ferritin (Iron)
Magnesium

And these thyroid tests

Test results from TSH
FT4
FT3
Tpo ab

also a fasting cholesterol profile would would show a lot of what is actually happening,with the thyroid.

Why a fasting cholesterol profile you may ask

Hmmm well ,

when FT3 is low or the receptors do not function LDL cholesterol will rise,triglycerides can rise too, but the LDL rise is the "true marker".
sufficient FT3 is required for the cholesterol LDL receptors to work optimally. to clear the LDL cholesterol.


The cholesterol fasting (bloodt test) profile is quite important it shows if
FT3 receptors are actually active ,and if the FT3 amounts are adequate.
also if the T3 uptake is good which is what we want


Thyroid tests can have changes due to hormones , or infection virus etc, but the fasting cholesterol profile makes the lines much clearer,as it will not deviate.(There are a few rare exceptions it can deviate with particular genotypes but this is rare indeed.

Post the tests above if you get them done ,
there is good support on this forum inconjunction with you Endo, ofcourse.

If you have high FT4 and low FT3,

this would indicate an adrenal issue TPO ab test would be good to clarify this ,

or it could be a conversion issue ,
where T4 (Eltroxin) is not converted into enough FT3,

the conversion issue can be clearly seen to but the above results need to be in place to draw a conclusion,

I hope your Endo or Doc, is well aware of the above, please run it by them



goodluck
chessguy

dubbo

Hi everyone,I'm not sure if this is the right place to post,so please feel free to redirect me! I have an elevated tsh of 9.7,and a lot of hypo symptoms,cold all the time,dry skin,hair loss,weight gain,exhausted all the time,depression,I could go on! I'm always picking up infections too.my Dr put me on a low dose of eltroxin before Xmas,and took me off as she felt I'm too young for tablets (26) and was worried I'd go overactive. Been feeling awful since then,got latest bloods today,tsh 9.5, but free t4 18.5 which is apparently ok...I'm just looking for support really as I feel awful and I'm worried she won't give me tablets :(thanks for reading

Smugglers90

I know exactly how you feel Dubbo. Had all the same symptoms when I got tested before Christmas. The only way I could describe it to my GP was that I didn't feel quite right.

I was referred to an Endo and put on Eltroxin. I'm only 22 and he didn't mention anything about my age?

If you don't feel right in yourself it might be worth getting a second opinion.

cltt97

Dubbo, get a new doctor, and make sure you get an antibody test (TPO-Ab). The age argument is weird, it doesn't make any difference what age you are really. What is important is to find out if this is caused by an autoimmune illness or something else. My guess would be that most of your gland is still working, hence the good FT4 result, but if left untreated will soon change.

dubbo

Thank you both so much for your replies,I'm feeling so alone in it so it means a lot :)I think they checked my antibodies before and they were ok,but is it possible to have high tsh if its not underactive? I'm still trying to get my head straigt,thanks again

christmas2012

Im going to get my bloodtest done this week as im not sure if i have a slow thyroid,i went to a health food shop and the assistant in there said i might have it(im no hypochondriac but i think its worth checking out)...

I was wondering did anybody ever hear of the iodine and cider vinegar diet and what is the maximum dosage of iodine you can take in a day?

cltt97

Christmas 2012: I have never heard of the iodine and cider vinegar diet, but I can tell you that iodine is one element you do not want to mess around with, because you can upset your system tremendously. You can end up hypothyroid by taking too much iodine by inducing a reverse response of the body trying to protect itself, so stay away from experiments with iodine.

Dubbo: There are 3 glands (hypothalamus, pituitary gland, thyroid gland) involved in regulation of thyroid hormones, and regulation works via a feedback system. So if your TSH is elevated whilst FT4 is normal, either there is something wrong with the feedback system (i.e. one of the regulating glands doesn't work properly) or your thyroid gland is getting weaker. You should double check if you had any antibodies tested, both for Hashimotos or Graves, that should be your first port of call. The thyroid function tests should be repeated in any case, just to make sure the findings are correct. Also ask your GP to check for iodine deficiency. The symptoms you are describing are typical of hypothyroidism and it may well be that you are hypothyroid and your pituitary is pumping out TSH like mad just to get the thyroid to keep the T4 levels up, but if this is indeed due to a malfunctioning thyroid gland the situation will not be sustainable and eventually the T4 will drop. Do you have any signs of a goiter, i.e. enlargement of the gland.

dubbo

cltt97 wrote: »

Christmas 2012: I have never heard of the iodine and cider vinegar diet, but I can tell you that iodine is one element you do not want to mess around with, because you can upset your system tremendously. You can end up hypothyroid by taking too much iodine by inducing a reverse response of the body trying to protect itself, so stay away from experiments with iodine.

Dubbo: There are 3 glands (hypothalamus, pituitary gland, thyroid gland) involved in regulation of thyroid hormones, and regulation works via a feedback system. So if your TSH is elevated whilst FT4 is normal, either there is something wrong with the feedback system (i.e. one of the regulating glands doesn't work properly) or your thyroid gland is getting weaker. You should double check if you had any antibodies tested, both for Hashimotos or Graves, that should be your first port of call. The thyroid function tests should be repeated in any case, just to make sure the findings are correct. Also ask your GP to check for iodine deficiency. The symptoms you are describing are typical of hypothyroidism and it may well be that you are hypothyroid and your pituitary is pumping out TSH like mad just to get the thyroid to keep the T4 levels up, but if this is indeed due to a malfunctioning thyroid gland the situation will not be sustainable and eventually the T4 will drop. Do you have any signs of a goiter, i.e. enlargement of the gland.

THanks for this,I have so much to learn! My neck feels swollen and has done for ages,if that's relevant? My tsh has been elevated for 8 years at this point so I really don't see why my Dr won't put me on tablets,ill ring her tomorrow for some answers.would a specialist be a good idea? It's so great to get support here I feel quite alone in it normally thanks

cltt97

8 years??? That's mad. I'd say get yourself to see an endocrinologist, you need expert advice here, it appears your GP does not have much more to offer you at this stage. Where are based?

dubbo

cltt97 wrote: »

8 years??? That's mad. I'd say get yourself to see an endocrinologist, you need expert advice here, it appears your GP does not have much more to offer you at this stage. Where are based?

Based in south Dublin,if you had any recommendation that would be great,I'm worried about spending loads of money for them just to tell me its not bad enough for tablets and just keep an eye on it,that's all I have been getting,but tsh has been constantly elevated thanks

Smugglers90

Dubbo, if you feel that your GP isn't listening to what you're saying then I would see a different GP or get referred to an Endo. My own GP wouldn't prescribe it herself but she sent me straight to an endocrinologist. It can be a lot of hassle with all the appointments and blood work but it will be well worth it in the end. I feel like a different person since I started on Eltroxin. Did you feel any better when you were on the low dosage? It can take time to get the dosage right.

It can feel a bit isolating when you're so tired and don't feel well but it is a very common condition. Don't ever be stuck for support, there seems to be plenty of us on boards!

dubbo

Smugglers90 wrote: »

Dubbo, if you feel that your GP isn't listening to what you're saying then I would see a different GP or get referred to an Endo. My own GP wouldn't prescribe it herself but she sent me straight to an endocrinologist. It can be a lot of hassle with all the appointments and blood work but it will be well worth it in the end. I feel like a different person since I started on Eltroxin. Did you feel any better when you were on the low dosage? It can take time to get the dosage right.

It can feel a bit isolating when you're so tired and don't feel well but it is a very common condition. Don't ever be stuck for support, there seems to be plenty of us on boards!

I was starting to feel a little better,didn't need naps every day and my mood definitely was improving,but my Dr said any improvements were in my head....the more I'm writing here the more I think I need a new Dr...my only fear is that nothing will be done,but surely my tsh is enough.its great hearing from people who understand thanks

cltt97

I'll pm you my GP and Endo details and you can think about if either suits.

dubbo

cltt97 wrote: »

I'll pm you

my GP and Endo details and you can think about if either suits.

Thanks so much

cyning

Dubbo if my doc/endo only went by my ft4 results I wouldn't be on any medication at all: and I've been on thyroid medication since the age of 16 in various guises. Definately get a second opinion and a referral to an endo.

Anyone have any experiences with an enlarged thyroid in the third trimester of pregnancy? My antibodies are thankfully negitive, but my gland is enlarged and tender. And I am swinging from over to under active within weeks. It's hard going!!

Wyldwood

Dubbo, I have to agree with everything that has been recommended to you here. The first thing you need to do is find a sympathetic gp who understands thyroid problems, that's vital. Many doctors treat thyroid sufferers as malingerers/ hypochondriacs because symptoms vary wildly. Depression is often diagnosed & antidepressants offered. At 9.5 you need treatment. I am currently at 7.7 (down from 36.5 last Nov) & my endo is adamant it has to come down below 6 at least. Unfortunately, I have a problem tolerating Eltroxin & go hyper so just on 25 daily.
A good gp or endo will work with you & order all the relevant tests to get you back on track.

dubbo

Wyldwood wrote: »

Dubbo, I have to agree with everything that has been recommended to you here. The first thing you need to do is find a sympathetic gp who understands thyroid problems, that's vital. Many doctors treat thyroid sufferers as malingerers/ hypochondriacs because symptoms vary wildly. Depression is often diagnosed & antidepressants offered. At 9.5 you need treatment. I am currently at 7.7 (down from 36.5 last Nov) & my endo is adamant it has to come down below 6 at least. Unfortunately, I have a problem tolerating Eltroxin & go hyper so just on 25 daily.
A good gp or endo will work with you & order all the relevant tests to get you back on track.

I honestly had no idea that my Dr was being so crap,was starting to think maybe I am a hypochondric to be honest so its great to hear I'm not thanks