thyroid misery

dubbo

Me again,feeling very frustrated.just off phone to the Dr,she said because my free t4 is normal she doesn't want to put me on meds,because the last time we tried my tsh was reducing,but my free t4 was heading to overactive,but she said by the time I'm 30 ill need the tablets,just worried this means 4 more years feeling crappy or is it still worth seeing someone else given her rational.also said my stress levels are probably causing my physical symptoms.so frustrated,thanks for reading

cyning

Dubbo there is no way a doctor should be holding off on giving you tablets with an abnormal TSH... particularly when you are symptomatic... Like my own GP would tell you he's been in practice for 30 years and he's never seen someone like me nor does he ever expect to again. Just because your outside the curve of what they think is "normal" is no reason not to treat you: and been treated on the basis of age is madness.

My FT4 is nearly always within normal levels and my TSH very high... I'm 26 too, and honestly you NEED to get a new doctor and a referral to an endo.

Your endocrine system is too important for doctors to mess around with... seriously you really should get a referral to a good Endo and get a GP who will listen you you, and will take notice of the fact that you are symptomatic with an elevated TSH.

Also what I have is peripheral resistance to T4 hormone: so I will have a normal FT4 with an elevated TSH... it's not something there's a test for, but it does mean you have to be treated symptomatically aswell as by blood test results.

dubbo

cyning wrote: »

Dubbo there is no way a doctor should be holding off on giving you tablets with an abnormal TSH... particularly when you are symptomatic... Like my own GP would tell you he's been in practice for 30 years and he's never seen someone like me nor does he ever expect to again. Just because your outside the curve of what they think is "normal" is no reason not to treat you: and been treated on the basis of age is madness.

My FT4 is nearly always within normal levels and my TSH very high... I'm 26 too, and honestly you NEED to get a new doctor and a referral to an endo.

Your endocrine system is too important for doctors to mess around with... seriously you really should get a referral to a good Endo and get a GP who will listen you you, and will take notice of the fact that you are symptomatic with an elevated TSH.

Also what I have is peripheral resistance to T4 hormone: so I will have a normal FT4 with an elevated TSH... it's not something there's a test for, but it does mean you have to be treated symptomatically aswell as by blood test results.

THanks that's really helpful to know,ill have to get this sorted I'm fed up feeling knackered and depressed ! Thanks

Kitty cats

Is it an endocrinologist I need to see? My symptoms are severe pms.weight gain,low mood, acne,thinning hair.foggy brain, sleep probs,and lethargy..my doc gives me anti d/ anti anxiety meds,,fed up being like this ..help pls

Wyldwood

Kiltty Cats your first port of call is your gp. You don't say if you've already had thyroid blood tests done but if not this is the first thing to do. Ask for TSH, Free T4 & Free T3 (you may have to push for the T3). Ask for a copy of the results when they come back so you can see if you're outside normal range. Once you have that information & you know you are hypo you are then in a position to ask for a referral to an endo if necessary.
If your gp is unwilling to do this find one who will.

Kitty cats

Wyldwood, I've had bloods and gp said TSH is normal..my mum is on eltroxin bout 25 yrs..I'll go back to gp though..What is normal range?

cyning

Kitty cats wrote: »

Wyldwood, I've had bloods and gp said TSH is normal..my mum is on eltroxin bout 25 yrs..I'll go back to gp though..What is normal range?

This can vary from lab to lab: if you ask for a copy of your results it will tell you what the normal range is.

Kitty cats

Thanks for all the replies !!

Kitty cats

Tigerb,,My doc has said because my TSH levels are normal she won't test for FT3 or FT4.. She is doing my bloods again only because I insist, but is testing for antibodies this time.why is this? I also feel the need to eat often and an tired all the time but find it hard to sleep and memory is very poor..

Deepsurf

dubbo wrote: »

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

Dubbo, Do get a second opinion as you obviously need treatment and defo get someone to suggest or investigate why your neck feels swollen. I'm still trying to get my tsh levels right from this time last year so I totally understand what it's like when your levels are off.

dubbo

Deepsurf wrote: »

dubbo wrote: »

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

Dubbo, Do get a second opinion as you obviously need treatment and defo get someone to suggest or investigate why your neck feels swollen. I'm still trying to get my tsh levels right from this time last year so I totally understand what it's like when your levels are off.

Thanks deepsurf, I have decided to see an endo,I don't think I can keep up work etc feeling the way that I am.gonna try exercising more too,I used to be so active but now I'm too wrecked! Really been given the confidence to get some answers now thanks to everyone on here

cltt97

Kitty cats wrote: »

She is doing my bloods again only because I insist, but is testing for antibodies this time.why is this?.

To see if you have an auto-immune disease, i.e. Hashimotos. Quite often, when people have Hashimoto's thyroiditis (your own body attacks the thyroid gland and destroys it) they are symptomatic despite their hormones (TSH, T4,T3) still being in the normal range. Some doctors treat this with Hormone replacement others don't. Appears the opinions are divided whether this should be done or not. You should also ask for iron status and blood glucose, your symptoms could be caused by all sorts of other things, too!

Keep us posted.

Dubbo, good luck and keep us posted, too, it is always nice to hear the outcome...

dubbo

Just home from a few days down the country,most of the time I was asleep to be honest! Can't wait to get sorted,does anyone know if there is anything I can do to feel better before I get my meds sorted? I feel too wrecked to exercise even though I'm sure it would help...gonna try get to see n endocrinologist asap but any ideas to keep me going until then? Thanks a lot

robinph

Just back from an appointment at the hospital to review my progress with the insulin pump so saw the diabetes specialist nurse, dietitian and consultant at the same time. Asked me how I was getting on with it, and the moment I mentioned that I was diagnosed with hypothyroidism at xmas they wanted to know more about what the GP was doing for me, and without me prompting the consultant said that he was going to write to the GP and tell them what needs to be changed for me.

Things need tweaking with my insulin pump now to get the best out of it now I'm on the thyroid meds as well, but completely opposite to what the GP'S have said so far they were putting down my current crappy feelings to being due to the thyroid issues.

I'm feeling better already now that something is being done and I was listened to, even though todays appointment was not really about thyroid I have got a decent response out of them.

dubbo

Hi again everyone,

Have just arranged an referral to an endo. I decided to go private to get seen faster, does anyone know how long I'll be waiting approx? I dont think I can name the endo here publicly so just a ball park figure if anyone had any idea would be great, thanks!

Wyldwood

In Cork it took about six weeks for my appointment from a private endo.
Hope you're feeling ok Dubbo. Make a list of questions for your endo, you'll forget things once you're in there with him. Take your blood results with you & have a fresh TSH/T4 test done a week or so before if you won't have had a recent one done before the appointment. The more up to date the results the better the endo can decide on treatment

Good luck with the appointment

dubbo

Thanks a million for your reply, feeling fairly awful to be honest, so i will definately make a list to bring with me, or else my foggy head will let me down! Just cant wait to start feeling better. is there anything i can do in the meantime to feel better, or will it only be tablets that sort me? thanks again this forum is great

penderella

Hi Dubbo,
I have been able to get a private appointment with Endo's quite quickly.
1st within a week, he was CR*p
2nd within 3 weeks he was worse
3rd within 3 weeks... she seems cool as yet i have not seen her. I was due for an appointment first week in May. I sent a full personal history in my own words, with a trended blood test results dating back to 2006.
She took the time to review this information, gave me some suggestions over the phone, asked me to get bloods taken before a new appointment date on 5th of June.
After dealing with the other two money grabbing, condescending, pompous, arrogant, deaf A**h***s, i am feeling positive about this lady.

MODSNIP- no pimping petitions/causes on-thread please.



thanks

dubbo

Signed Thanks for the info, hopefully I wont be waiting too long or have someone awful!

TheJinMu

Hi all,
So I was told I have an underactive thyroid around February of this year. I cant remember what level she said it was, but I was put on 50mg for a month and then had a blood test again. She said I was gone the opposite way and to stop taking the meds and come back for a second blood test 2 months later. I was only starting to feel better when I was taken off them! Then I felt great for about a month, then started to feel crap again. (For the first month on the tablets I felt a bit worse actually-even tireder than usual)

So I went back for the blood test 2 or 3 weeks ago and my level was 9, so she gave me 25mg for a month and I'm to go back for another blood test after that (Ew:( )

So now I've been on them for just over 2 weeks and I'm feeling crappy again. Very very tired over the last 2 days (Though granted I havent been eating very well this week :P )

I know I should exercise more-I'm now thinking of starting yoga or getting the Zumba fitness game for the Kinect Any advice on where to start with yoga? I cant afford classes...

And can anyone shine any light on when I should start feeling better? I know it probably varies from person to person, but I'm sick of being tired 24/7. (I went to bed at 11:30 last night, and woke up at 1pm today. Still tired.)

cyning

Dubbo I've seen four endo's over the last ten years: never waited more than three weeks. But I do think it depends where you are!

Thejinmu.... I always feel worse when my tablets are even slightly adjusted: for me that's totally normal: it normally takes about three weeks to even out.

markie29

i just found out that i need an operation on my eyes as my thyroid has caused my eye sockets to move a little bit forward.

its a nightmare when there is a sunny or windy day because my eyes are so sensitive they water up and i can barely see anything.

has anyone had this operation done before to move the eye sockets back in place?

Sheppie

Hi all,
Was told I had an underactive thyroid in Jan and still not feeling great. The tiredness and colds are getting soul destroying. I was very active and did a lot of cycling and running. But for the last few month of 2011 and no energy at all for anything. My last blood tests shows my levels are now to high and need to reduce my tablets. I have been trying to get fit again but find I tend to overdo it and end up wrecked for a week after. On the other hand I don't want to go too easy on myself and never make any progress. Does anyone know of any information or a plan I could follow to get back fit again but not overdo it in the process. Most of my friends are very active and I miss the buzz of the races (my ego also missing beating some of them). Thanks for any help.

Orla K

Sheppie wrote: »

Hi all,
Was told I had an underactive thyroid in Jan and still not feeling great. The tiredness and colds are getting soul destroying. I was very active and did a lot of cycling and running. But for the last few month of 2011 and no energy at all for anything. My last blood tests shows my levels are now to high and need to reduce my tablets. I have been trying to get fit again but find I tend to overdo it and end up wrecked for a week after. On the other hand I don't want to go too easy on myself and never make any progress. Does anyone know of any information or a plan I could follow to get back fit again but not overdo it in the process. Most of my friends are very active and I miss the buzz of the races (my ego also missing beating some of them). Thanks for any help.

I find I do minimal cardio I just get tired for days after when I push myself too much and it's difficult to know where the line of feeling fine and feeling tired is. So I tend to stick to resistance training, I feel much better on it I'm able to do more and I get better results. Just don't do endless reps with tiny weights, have a look at the fitness forum(in rec) for advice(there's a strength forum in sports too) The best I find is have a routine that you can tweak so if your feeling tired take it easier if your feeling good do what you can.

Sheppie

Thanks orla, will give it a try. hopefully will make a difference

treecreeper

hi folks,
consultant rheumy on wednes and very nervous about it.
am feeling s...t and my ANA is raised.
my neuro wanted me to see a fab endo at her hospital but it all went pear shaped, dont think she fully realised that when letters are sent out you actually get a bit shuffled and can end up seen a reg and thats what happened.
he asked why twin was there and her hypothyroidism could be dealt with by a gp, but we both were sent by the neuro.
we both feel utterly lousy all the time.
now my tinnitus is completely awol, a veritable factory has taken up residence in my head.
anyone know if tinnitus may be connected with thyroid, a long shot i know.
get so tired and the tinnitus does go off richter.
doing too much as well.
not sleeping with all the neuro stuff, the pain and the exhaustion, absolutely fed up with it all.

cltt97

Sheppie wrote: »

I have been trying to get fit again but find I tend to overdo it and end up wrecked for a week after. On the other hand I don't want to go too easy on myself and never make any progress. Does anyone know of any information or a plan I could follow to get back fit again but not overdo it in the process.

Hi Sheppie,

All trial and error I'm afraid, but don't think that if you really push yourself it will get better, that is not how it works. You're also only diagnosed something like 5 months ago? Takes the system a good while to adjust. The thing to realise is that very often when people finally get diagnosed it is because they have reached a state where they feel absolutely rotten. Which means that your body has reached a certain level of exhaustion that has become noticeable. This doesn't get fixed in a couple of months unfortuantely. And the lack of thyroid hormone affects the body in many different ways. Diet and nutrition plays a huge role here. Many thyroid sufferers find that they have low iron levels, low B vit levels, low vit D, low cortisol. Some benefit from taking mineral and trace elements. Some find they feel better on a low carb diet that is rich in fish and vegetables. Some go completely gluten free or dairy free. In any case, next time you have your bloods done, ask for iron status, vitamin D, B12, folate, full blood count, kidney function, liver function, bone status, cortisol, glucose, lipids. Personally I can really track the status of my thyroid replacement by tracking my lipids and kidney filtration rate, they are hugely influenced by this (in my case). Also my Bs and iron are at the lower end of the range, I also have low cortisol and I am only just now going for a vitamin D test.

So the point I'm really trying to make is, don't push yourself, but nurture yourself. Thyroid is a tricky customer and needs lots of patience;)

cltt97

treecreeper wrote: »

anyone know if tinnitus may be connected with thyroid, a long shot i know.

Hi treecrepper, you really are having an awful time. I'm sorry I can't be of much help as I don't know much about all the conditions you suffer from, I can only imagine that it is a nightmare. Concerning the tinnitus, I have so far not come across any other thyroid sufferer who has mentioned this. This is not to say that it doesn't happen, but it appears not to be on the "typical thyroid symptom" list anyway.

I really hope you'll get some help! Best of luck.

Sheppie

Hi Citt77,
Thanks for the advice, I did think that after 5 months I'ld have this sorted and be back to myself. Alot more to thyroid problems than just taking Eltroxin. Doctors seem to know very little about the problem and how to manage it.

garhjw

hi all,

i posted here about 2 months ago after having bloods done and was diagnosed with hypothyroidism. TSH was 8.17 and Free T4 10.8.

my GP wanted me to begin taking synthetic hormones but i wasn't big into the idea. i had absolutely no symptoms. i'm male, 35 and in excellent physical condition.

anyway, i decided to try alternatives to hormones.

i cut all sugar, yeast, wheat, soya and caffeine out of my diet.

i also started taking ginseng, selenium, probiotic, b-complex and hemp oil. i also cut back on dairy substituting milk for coconut milk.

during that time, i lost about 3 kilos, which was sweet.

anyway, went for tests last week 2 months after the last ones. GP rang me today saying that everhything is back to normal.

just thought i would share that with you.

i feel very luck that i didnt suffer from any of the symptoms that some of you have described. i hope that you can get the help that you need with the correct meds if that is what is required.

for any of you who want to try alternative methods of treatment, you could try a healthfood store. I went to Restore on Camden St in Dublin. very knowledgable and the treatment plan sorted me right out.