thyroid misery

Amazingfun

Welcome Missy

If you've read through the thread you know we sympathize greatly, me especially as I gained 4 stone over the course of being ill/untreated. By taking NDT and dropping the eltroxin I started to feel much better, but only really did I start to lose weight when I tried AIP. I know it's overwhelming but there are lots of good people here and other online places that are only too delighted to help you get on your way.

My suggestion would be to get your bloods done if it's been a long time and especially if you don't know what your results even are.
Ask for a copy of them this time and then share them here if you want to?

AIP can be prepared for by reading and starting maybe to drop some of the more obvious "crap" foods you mentioned?

Glad you're here and wanting to feel better. No one ought to be sentenced to a life of enduring awful hypo symptoms.

cltt97

inocybe wrote: »

No, test was done at the hospital endocrinologist. Public, West of Ireland, I'm made to feel like a complete hypochondriac so I'm usually rushing out the door. I don't know what the actual result was, do they have to give you a print out if you ask for it does anyone know?

I'm not sure if they have to, but I always ask for it. My body, my test results, my responsibility. I think we've all been made feel like we're making our illness and/or symptoms up, the only thing you really can do is take control of the things you can control and otherwise find a doctor who is willing to work with you, but you need to really understand what it is you want/need.

rhapsodyinblu

Hi there,

Just a quick question. I had blood tests done the other day because of weight gain to check my thyroid.

I rang the doctors office this morning and the receptionist confirmed the results were in but that the doctor would have to call me about them.

Does that usual mean that they are not normal?

(I have a family history of thyroid problems, my paternal grandmother, aunt and male cousin have hypothyroidism)

I am a 22 year old female

Blingy

rhapsodyinblu wrote: »

Hi there,

Just a quick question. I had blood tests done the other day because of weight gain to check my thyroid.

I rang the doctors office this morning and the receptionist confirmed the results were in but that the doctor would have to call me about them.

Does that usual mean that they are not normal?

(I have a family history of thyroid problems, my paternal grandmother, aunt and male cousin have hypothyroidism)

I am a 22 year old female

It could just be as it's your first time being tested for it that the doc just wants to have a chat about the results. Or one of the results might be slightly higher/lower than expected. No need to worry until you find out. Fingers crossed there will be nothing wrong!

rhapsodyinblu

Results are in. Tests were normal. TSH 1.88. Better go to the gym so...

Wyldwood

Well, I think I may finally have an answer to why I've been having so many thyroid problems. Endo ordered an ultrasound on last visit and I honestly thought it was a waste of time & money but I was wrong.

When I had my thyroidectomy, over 40 years ago, the surgeon told me he took all but the size of my thumb nail. It turns out that I have a large amount of thyroid tissue left and that it is quite inflamed and showing signs of thyroiditis. This explains my sudden intolerance of Eltroxin and my inability to increase dosage. I'm quite relieved that at last I've got an explanation for my symptoms and that I'm not a hypochondriac after all

Let this be a lesson for everyone getting tests. I had all the usual tests but the only antibody test done was Anti TPO as I was officially hypo after my surgery and this is not the antibody causing my problem so I'm now going for further tests for other antibodies. Moral of story is rule everything out even if it is unlikely to be the cause.

Rhapsodyinblu so glad you're not joining the club!

Amazingfun

rhapsodyinblu wrote: »

Results are in. Tests were normal. TSH 1.88. Better go to the gym so...

I don't mean to worry you but many people have been told they weren't hypo based on TSH results alone, then they later found they in fact were. TSH is not a great barometer on which to base diagnosis:

http://www.stopthethyroidmadness.com/tsh-why-its-useless/


(Just for the record my TSH was 30 when I was diagnosed).

pa limerick

Hello I've been told that I'm borderline under active I think all I was told was that I have a reading of 4.8 and to come back in 6 weeks. What do I need to ask for in the next blood test ? And can headaches be a symtom?

cltt97

Wyldwood wrote: »

Well, I think I may finally have an answer to why I've been having so many thyroid problems. Endo ordered an ultrasound on last visit and I honestly thought it was a waste of time & money but I was wrong.

When I had my thyroidectomy, over 40 years ago, the surgeon told me he took all but the size of my thumb nail. It turns out that I have a large amount of thyroid tissue left and that it is quite inflamed and showing signs of thyroiditis. This explains my sudden intolerance of Eltroxin and my inability to increase dosage. I'm quite relieved that at last I've got an explanation for my symptoms and that I'm not a hypochondriac after all

Let this be a lesson for everyone getting tests. I had all the usual tests but the only antibody test done was Anti TPO as I was officially hypo after my surgery and this is not the antibody causing my problem so I'm now going for further tests for other antibodies. Moral of story is rule everything out even if it is unlikely to be the cause.

Rhapsodyinblu so glad you're not joining the club!

That is great news and just another example of how important it is to take control of your illness!
But tell me more about the other anti-bodies and why thyroiditis is causing your intolerance to Eltroxin?
I've had an ultra-sound and it just showed the "normal" and expected infiltration of the thyroid tissue which is typical for Hashimotos thyroiditis.

Wyldwood

cltt97, I don't fully understand the situation myself yet as I just got a quick explanation over the phone from the endo as I couldn't take the call where I was. Have an appointment in a few weeks to go see him after further tests so will get full explanation then.

Bottom line is that I had Graves when I was a teen and now the remaining thyroid tissue, which I thought was gone, seems to be firing hormone intermittently and I'm swinging up and down. I don't have Hashimotos but may have Graves antibodies which were never tested.

Will explain properly after my endo appointment.

cltt97

Ah yes, of course... Graves! Different kettle of fish altogether! Well keep us posted, hopefully you can get sorted now.

RoadhouseBlues

Hi folks. Don't know if its too late to jump in here. I read the first 20 pages and jumped to the end here:-). I was diagnosed with an underactive thyroid last August. Male. Mid 30's. I started on 75 Eltroxin and increased gradually. I'm now at 150 daily. I had the tiredness at the beginning and then as the Eltroxin kicked in I was full of beans. The tiredness comes back and goes away each time the dosage changes. However I can live with that. What I am tortured with is urinary tract infections. For the past 3 years. It was while getting blood tests for these that the thyroid problem came up. I read somewhere that uti's are uncommon in men. I also read that people with an underactive thyroid pick up infections more easily. I'm kind of hoping its the thyroid causing the infections cos its worrying now. I get them bout every 2 months. The people in the chemist said I have to stop taking the medication for the infections cos it will only cause more problems. Has anyone had trouble with these infections because of their thyroid. Cheers.

MistySky

RoadhouseBlues - welcome to the forum!

Have you been to see a urologist about your urinary tract infections? Or have you just been getting antibiotics (or other meds) from your GP on an ongoing basis? I could be completely wrong, but it's possible that whatever treatment you've been on hasn't cleared up the infection - it probably just improves the symptoms for a few months before flaring up again. If you haven't been referred to a urologist I would insist on it. It's no harm to get things checked out and he/she may be able to find the cause of the issue and try a different treatment.

It's possible your throid may not help matters, but I'd say it's more likely that your system has been weakened from 3 years of antibiotics etc.

Amazingfun

Film made by a fellow sufferer. I haven't watched it all yet, but it looks good

https://www.facebook.com/HashimotosProject


http://vimeo.com/96326279

RoadhouseBlues

MistySky wrote: »

RoadhouseBlues - welcome to the forum!

Have you been to see a urologist about your urinary tract infections? Or have you just been getting antibiotics (or other meds) from your GP on an ongoing basis? I could be completely wrong, but it's possible that whatever treatment you've been on hasn't cleared up the infection - it probably just improves the symptoms for a few months before flaring up again. If you haven't been referred to a urologist I would insist on it. It's no harm to get things checked out and he/she may be able to find the cause of the issue and try a different treatment.

It's possible your throid may not help matters, but I'd say it's more likely that your system has been weakened from 3 years of antibiotics etc.

Cheers Misty. I finally persuaded them to refer me to a urologist. I was just on antibiotics before this. There is an 18 month wait so it doesn't look like I will get to see anyone any time soon. I also have neck pain on the left side. Was shocked when doc stated its psychological. Apparently its all in my head:-):-). Feckin' madness.

cltt97

I battled with bladder infections for about a year, year and a half maybe. In the beginning I took anti-biotics as well, but I figured out pretty quickly that this didn't work for me at all. After that I just started to treat it with anti-inflammatory (i.e. disprin or something like that) and ph-altering medication, such as cystopurin, etc (which isn't really all that different from baking soda or alka seltzer really). Also avoided too much coffee and alcohol and just drank loads of water. problem is the bacteria adhere to the cell lining of the urinary tract and can survive for quite some time, hence the antibiotics only really work when it flares up, whereas the whole ph thing just makes the environment unfriendly for them. So what I noticed to happen was that recurrence and severity of infections became less and less until one day they were gone.... The whole thing with cranberry juice is also a bit confusing to people, because most drink it when they have the infection, which is the worst time, very acidic and propagate bacteria growth. You have to drink if when you don't have symptoms...

however, I would still do the urologist thing - my brother suffered from urinary tract infections for years, and turns out (eventually) that he had a chronic mild prostate infection which was the cause of all this....

RoadhouseBlues

Yeah they are a real nuisance. Very painful. I didn't know about the cranberry juice thing actually. I always took it when I had the symptoms, so thanks for that information. I've often wondered too. When people have their thyroid removed, is it because the eltroxin has stopped working or will I have to have it done eventually. I can't get any information of the doctors here at all. I have just had to google everything.

lovelystuff

RoadhouseBlues wrote: »

Yeah they are a real nuisance. Very painful. I didn't know about the cranberry juice thing actually. I always took it when I had the symptoms, so thanks for that information. I've often wondered too. When people have their thyroid removed, is it because the eltroxin has stopped working or will I have to have it done eventually. I can't get any information of the doctors here at all. I have just had to google everything.

Sorry to hear you are having a bad time,it can be really tough! As far as I'm aware, people who get their thyroid removed have overactive thyroid/graves disease, and that's why they need it removed. For people with under active thyroid it's all about the medication and then lifestyle, diet, exercise etc. I hope you feel better soon!

RoadhouseBlues

lovelystuff wrote: »

Sorry to hear you are having a bad time,it can be really tough! As far as I'm aware, people who get their thyroid removed have overactive thyroid/graves disease, and that's why they need it removed. For people with under active thyroid it's all about the medication and then lifestyle, diet, exercise etc. I hope you feel better soon!

Cheers for the info. Its a grand thread here. I've got more info here than all the times I've been to the doc:-). I've heard people say that the tap water in Ireland doesn't help the thyroid, but I don't really know much about that to be honest.

MistySky

RoadhouseBlues wrote: »

Cheers Misty. I finally persuaded them to refer me to a urologist. I was just on antibiotics before this. There is an 18 month wait so it doesn't look like I will get to see anyone any time soon. I also have neck pain on the left side. Was shocked when doc stated its psychological. Apparently its all in my head:-):-). Feckin' madness.

An 18 month waiting list is a shameful reflection of the shambles our health care system is in! If you have private health insurance it might be worth considering going private - you might be able to see someone sooner and get sorted. Typically a private visit to a consultant is somewhere around €180 for the first visit and about €100-120 for follow up visits. Tests would be extra though and might be expensive depending on what's required.

Best of luck! Hope you get sorted soon!

Mia01

Hi!
Can anyone point me in the right direction to find a good Endo or GP in the south east ?

thanx in advance

RoadhouseBlues

MistySky wrote: »

An 18 month waiting list is a shameful reflection of the shambles our health care system is in! If you have private health insurance it might be worth considering going private - you might be able to see someone sooner and get sorted. Typically a private visit to a consultant is somewhere around €180 for the first visit and about €100-120 for follow up visits. Tests would be extra though and might be expensive depending on what's required.

Best of luck! Hope you get sorted soon!

Thanks Misty. Aye its mad alright. I'm not working to be honest so I don't have insurance. At least I have the medical card though.

Just a quick question. This is somethin' I shouldn't even be worrying about, but do any of ye get embarrassed going back to the doctors all the time. Cos between the two month blood tests for the thyroid, and the infections I seem to be in an out all the time. I'm turnin' into an old woman:-). (No offence to old women btw). Sometimes I do wonder are they looking at me thinking. That fecker again. What does he want now:-)

lovelystuff

[quote="RoadhouseBlues;91202079"
Just a quick question. This is somethin' I shouldn't even be worrying about, but do any of ye get embarrassed going back to the doctors all the time. Cos between the two month blood tests for the thyroid, and the infections I seem to be in an out all the time. I'm turnin' into an old woman:-). (No offence to old women btw). Sometimes I do wonder are they looking at me thinking. That fecker again. What does he want now:-)[/quote]

I used to worry about this too,but realistically we are the best advocates for our own health! Doctors get paid to see us whether we are private patients or medical card patients so I really think we have nothing to feel embarrassed about. Especially with something like thyroid, we will always have it, so we need to get the best treatment possible!

Amazingfun

My Gp visits have dwindled greatly since I started in NDt , I am happy to report

redcatstar

Hi
Its awhole since I was on and my posts seem to not be ending up were I want dem. Im going to 1st visit with dr bell in galway just wondering does she test Ft3 etc. I have no enetgy , tired and tearful due to feeling like this tsh is 0.8 ft4 is 13.8 but I feel real bad only blood test came back low was ferrtin at 7. I cant take much more of this if anyone can tell me anything or advice pls

lain33

Hi, i've only just found this thread and this is my first time posting but i'd really appreciate some advice. i've been on 50-75mg of eltroxin for last 10 years after a partial thyroidectomy. But i've noticed that over the last couple of years my hair has become very thin on the top of my head. Has anyone else noticed this? Would be very grateful for any advice as its really getting me down at this stage.

Amazingfun

Hi Iain, give this a read :

http://www.stopthethyroidmadness.com/losing-my-hair/


I had major hair loss but noticed it got better when I upped my iron and switched to NDT. I am lucky in that I have quite thick hair so no one notices it but me, however I still lose more than normal. It's a common symptom for many Hashis/hypo people. Good luck!

lain33

Thanks so much..... can i ask did you have any problem in having NDT prescribed. I'm in limerick and my gp never even mentioned i had an option to change meds, but its definately something i'll look into.

Amazingfun

Yes, I did indeed have problems getting NDT. There are more GP's and endos prescribing it now although it's still ridiculously difficult to get.

You ought to try and see what's going on in your area and if you still have trouble getting it feel free to PM me for more on how I do things now.

cltt97

lain33 wrote: »

can i ask did you have any problem in having NDT prescribed.

The problem is that NDTs (e.g. Armour Thyroid, ERFA Thyroid) are not licensed in Ireland, the only licensed medication for hypothyroidism in Ireland is Eltroxin, everything else, including T3 medication is not licensed. So many GPs and Endos are either not aware of it, or if they are they think it's madness because the NDTs are made from pigsgland.
It is not illegal, however, to prescribe these, if the doctor deems it necessary for you to have this medication.
The tricky part is to find a doctor that will work with you on this. GPs are probably less likely to do it so you might need to find an endo. Maybe someone here is from the Limerick area and can give a recommendation.