thyroid misery

EJ78

Can't I rant about my thyroid here please?? I'm new to boards and new to having a thyroid issue n I've no idea who to talk to about it. I'm reluctant to keep googling stuff cause it's overwhelming.
Before you guys were diagnosed did you ever feel like you were imagining the symptoms? I have chronic pain. My muscles and joints ache daily and some more so then others. I was told for the first time I've an under active thyroid a couple weeks ago but told nothing since. I feel like it's not true yet cause I haven't seen the doctor yet or been given any further tests, meds or advice yet. So I'm still wondering how the hell can my thyroid be making my right arm ache so bad constantly. Why is it hurting my hips?! That's a bit random. Will I ever stop gaining weight?! There's so many different random things wrong with me that I guess I'm in disbelief that just one glad is causing it all!
I guess I had myself believe that I was either imagining the stuff wrong with me or it was all just cause I'd gained so much weight and that was just life, out of my control since diet and exercise never had an impact on it.

Sorry if this is the wrong place for this rant, it's just some days the constant pain just gets to me and I need to vent.
Thanks.

Wyldwood

EJ78, my heart goes out to you. Yes the thyroid affects every part of the body when it's out of whack and everyone has different ailments. You are not alone in feeling frustrated with your thyroid symptoms, this thread exists because most of us here have had odd symptoms and needed to vent about the way we feel, so rant away!

I would recommend that you read Mary Shomon's articles on http://thyroid.about.com/

also the Thyroid UK site is good http://www.thyroiduk.org.uk/tuk/

I think you need to sit down with your GP and discuss your symptoms,maybe you need a review of your treatment.

suavek

Hi guys, I'm looking for a good GP in Castleknock/Blanchardstown/Cabra/Ashtown area. My wife's struggling with a hypoactive thyroid. Her current GP only tested her TSH and T4, but we did some additional tests on our own (T3, vit D, ferritine etc) and results are not that great.

She's currently on 50 mg eltroxin and started taking vitamin D3, as we found out her blood levels were at 30% of the norm. But she often feels cold and tired and so on...

We've also been thinking, if she has an under active thyroid, shouldn't our kids be tested for it too (3 years and 8 months)? Current GP's told us not to worry, but somehow we don't feel very convinced.

Thanks in advance for any clues!

njs030

suavek wrote: »

Hi guys, I'm looking for a good GP in Castleknock/Blanchardstown/Cabra/Ashtown area. My wife's struggling with a hypoactive thyroid. Her current GP only tested her TSH and T4, but we did some additional tests on our own (T3, vit D, ferritine etc) and results are not that great.

She's currently on 50 mg eltroxin and started taking vitamin D3, as we found out her blood levels were at 30% of the norm. But she often feels cold and tired and so on...

We've also been thinking, if she has an under active thyroid, shouldn't our kids be tested for it too (3 years and 8 months)? Current GP's told us not to worry, but somehow we don't feel very convinced.

Thanks in advance for any clues!

I don't know about the gp but it takes time for the dose of eltroxin to get to the correct amount. It's built up gradually with blood tests every 6 weeks or so to check it. Going too high to fast can have very serious effects.

As for the children they are very young and unlikely to have it at that age, unless you see signs over a period of time it's not something to worry about.

suavek

Thanks for the reply,
it's been going on for a very long time. We first found out during the first pregnancy. Last GP visit was about 4 months ago, the GP gave her a prescription for about 4 months and said to return when she needs a new one...

njs030

suavek wrote: »

Thanks for the reply,
it's been going on for a very long time. We first found out during the first pregnancy. Last GP visit was about 4 months ago, the GP gave her a prescription for about 4 months and said to return when she needs a new one...

Oh no that's crazy. New gp immediately!! What's her tsh?

RentDayBlues

suavek wrote: »

We've also been thinking, if she has an under active thyroid, shouldn't our kids be tested for it too (3 years and 8 months)? Current GP's told us not to worry, but somehow we don't feel very convinced.

Thanks in advance for any clues!

Can't recommendba gp.

Newborns are tested for thyroid conditions as part of the heel prick test, but as I have hashimotos both of mine were also tested using standard blood test at 2 weeks

Corruptedmorals

Is she the only one in the extended family to have it? If so I wouldn't be too concerned about testing your children at this stage unless they are symptomatic. It's uncommon to have it as a child, more likely to develop as a teen or later. In my family my sister and I were diagnosed as teenagers with symptoms but the four other family members/relatives were all diagnosed late in life incidentally and only one actually had symptoms.

No help on the GP front either I'm afraid.

jozi

Can anyone recommend a good GP either nearby Drumcondra/Phibsboro or Donnybrook are? My GP in Cavan who had her own problem with her thyroid was very good at monitoring my bloods and being able to tell me about whats going on. I've since moved to Dublin and transferred to a different doctor who is fine but I wasn't impressed about his knowledge on thyroid and for this reason I haven't had blods done in 12-18 months. I'm feeling tired lately and think it might be a good idea to get bloods checked again against older results.

I can't remember if I had an under or over active thyroid except that neither was to high for medication, which I would prefer to stay away from for as long as possible

lilblankdress2

Hi everyone,

I am new to this forum and found it through search and reaching out as I am currently having a little freak out! Reading over the last few pages and I don't know if it is helping me to relax or making me worry more....

Last Aug I had a viral infection which caused a goitre which was put down to thyroiditis, TSH was within normal range at 0.94, serum folate and B12 both lower side of normal ranges also. Went to a sh!te GP who reluctantly sent me for bloods and gave me a letter for an ultrasound which I did not follow up....

Then about 6 weeks ago had another viral infection and my neck decided to get fat again.... as did the rest of me. Went to a new GP last week who sent me straight into emergency dept as had a fine tremor and have symptoms associated with thyroid issues. So had an ultrasound and thyroid bloods including antibodies... all came back normal but now have an emergency MRI app. I am freaking myself out and afraid to say it to anyone. I have numerous symptoms associated with thyroid disorder but now afraid that it is something more sinister.

I guess I am just wondering has anyone here had normal bloods/ultrasound and still had a thyroid disorder? I have a very prominent goitre which is causing a pressure in my neck and head and I have had severe migraines weekly for the past 6 weeks. I know I should just wait for my MRI but so anxious that something sinister is going to show up and freaking myself out completely!

Any help appreciated

jenizzle

jenizzle wrote: »

I'll be curious to see what the next set of results will reveal anyway - I started Eltroxin 4 weeks ago. Next test is on the 29th but I'm going away for 3 months at the start of April so whatever I'm prescribed then will have to do me till I get back.

Got my 2nd set of bloods done 2 weeks ago - TSH and T4 had stabalised, so sticking with the 25mg of Eltroxin, as well as increasing iron intake as that was still really low. I'm also taking vitamin D and zinc.

Anywho, I am in SE Asia and trying to cut out as much gluten as I can, which is handy enough as bread isn't the best here and rice is everywhere Also trying to increase protein intake and have seen tempeh/tofu/edamame and even soy sauce which is everywhere here but I'm conscious that this is a goitrogenic food. Am I being too cautious by staying away?

Corruptedmorals

Did they give you the lab ranges when they said it had stabilised? That's great news but keep an eye on symptoms, lab ranges are important but it matters a lot more how you feel. Personally, my diet is okay but I don't go out of my way to cater for thyroid.

My latest results have deviated further. TSH 1.44 which is the lowest it's ever been, and T4 24 which is the highest it has ever been. Lowering Eltroxin was a disaster and increasing certainly isn't indicated. A bit fed up as energy is low. In an odd development my dad has just been diagnosed hypo. That's 3/5 in the family. No symptoms other than cold.

WildRosie

Hi. Just wondering if anyone has hypothyroid caused by lithium? I had my bloods done last week and my T4 is reduced by a third since my last test and is below the normal range. I really don't want to come off lithium, been on it for 7 years.

echo beach

WildRosie wrote: »

Hi. Just wondering if anyone has hypothyroid caused by lithium? I had my bloods done last week and my T4 is reduced by a third since my last test and is below the normal range. I really don't want to come off lithium, been on it for 7 years.

Did your doctor suggest coming off lithium? There are a lot of individual factors and you really need the advice of someone who knows your full medical history.

WildRosie

No she (the practice nurse) wants to retest to see if it comes down further. My GP is not great with psych meds and I know he won't change it but I don't have a psychiatrist since mine retired. I don't even know if coming off lithium is necessary, I really hope not cos it changed my life. I guess I'll have to wait to see what the results are like next time. If anyone has any experience of taking lithium I'd really like to hear how you got on.

Gremlinertia

WildRosie wrote: »

No she (the practice nurse) wants to retest to see if it comes down further. My GP is not great with psych meds and I know he won't change it but I don't have a psychiatrist since mine retired. I don't even know if coming off lithium is necessary, I really hope not cos it changed my life. I guess I'll have to wait to see what the results are like next time. If anyone has any experience of taking lithium I'd really like to hear how you got on.

I would get to your gp and ask to be referred to a new psychiatrist to be honest, no one here can give you advice on lithium etc. It's an absolute pain to have more than one long term condition with how treatments can conflict, always go to the experts.

WildRosie

Ok thanks, I think I'll wait and go back to the nurse and see what the next test is like. I'm not having any symptoms but at the same time I don't want the lithium to keep harming my thyroid. I know psychiatrists can manage this so that'll be my first port of call. Thanks for your advice.

janer97

Hi,

I was recently referred to an endocrinologist due to 'abnormal' blood test results. The results were not shared with me. The endo gave me a full exam & at the time concluded my thyroid was fine & I was just stressed from work & maybe a psychologist would help. He took a blood test anyways.

A week later I got a call to say a prescription was in the post for 125mg of Eltroxin!

I've managed to get a copy of the blood test result that the endo took & I'm trying to figure out if it means I have Hashimoto's disease. My endo never mentioned this to me but it seems from what I can find online that might be the case. Any help at all with this is greatly appreciated :

TSH: 13.79
Free T3: 5.2
Free T4: 14.7

ESR: 2

Anti TG: 358.8
Anti TPO: 8.1

TherapyBoy

Best person to ask about your test results is your endocrinologist. Matching symptoms or test results online isn't always accurate & you could end up worrying yourself unnecessarily. Contact your endocrinologist.

Emme

janer97 wrote: »

Hi,

I was recently referred to an endocrinologist due to 'abnormal' blood test results. The results were not shared with me. The endo gave me a full exam & at the time concluded my thyroid was fine & I was just stressed from work & maybe a psychologist would help. He took a blood test anyways.

A week later I got a call to say a prescription was in the post for 125mg of Eltroxin!

I've managed to get a copy of the blood test result that the endo took & I'm trying to figure out if it means I have Hashimoto's disease. My endo never mentioned this to me but it seems from what I can find online that might be the case. Any help at all with this is greatly appreciated :

TSH: 13.79
Free T3: 5.2
Free T4: 14.7

ESR: 2

Anti TG: 358.8
Anti TPO: 8.1

The best person to advise you is your endocrinologist but this website is useful for general information on nutrition, lifestyle etc.

I always find that if my thyroid is low I feel depressed. You might feel better when you start the eltroxin.

Jobsearch16

Hi All,

After being on a waiting list for 3 years, I am finally having my first consultation with an endocrinologist in CUH next week. I am being referred as I have an underactive thyroid. But I believe I have a range of other hormonal issues which I hope they will allow me to discuss.

Could someone please let me know what I can expect from this visit? Will they take blood and hormone tests? I rang my GP and she said that I do not need to take any blood test results with me

I have been taking 50mg Eltroxin for 3 yrs. My GP said she would not increase the dose. I was better off when taking nothing for 6 months but my GP said my levels had risen and I had no choice but to start taking it again and would be on it all my life

Thank you

Emme

Jobsearch16 wrote: »

Hi All,

After being on a waiting list for 3 years, I am finally having my first consultation with an endocrinologist in CUH next week. I am being referred as I have an underactive thyroid. But I believe I have a range of other hormonal issues which I hope they will allow me to discuss.

Could someone please let me know what I can expect from this visit? Will they take blood and hormone tests? I rang my GP and she said that I do not need to take any blood test results with me

I have been taking 50mg Eltroxin for 3 yrs. My GP said she would not increase the dose. I was better off when taking nothing for 6 months but my GP said my levels had risen and I had no choice but to start taking it again and would be on it all my life

Thank you

The endocrinologist might test you for T3, T4 and TSH. I have never been on Eltroxin but some people do well on it and others don't. I was on Armour but my GP changed me to Westhroid when Armour went up in price. Westhroid is natural dessicated thyroid which contains the thyroid hormones T3 and T4. Eltroxin contains T4 only. Your body is supposed to convert the T4 into T3 but some people don't seem to do this as well as others. Make sure you're getting enough iron and magnesium as this helps the body convert T4 into T3.

If you have more energy and feel better off the eltroxin than on it tell the endocrinologist this.

Good luck.

Corruptedmorals

You should definitely take blood results with you, if they are thyroid function tests they will greatly help in assessment. It wouldnt be as vital if they've been processed through CUH labs as they probably have access there and then, but even so, good to come prepared after waiting so long. Good luck.

Wyldwood

I see an endo in CUH and he always expects me to have bloods done by my GP before a consult, in fact once when the GP refused to do them he told me, in the nicest possible way, that we were both wasting our time without blood results (feel free to quote this to your GP if you like). Even if they are done in the CUH lab and he has access to them it's better for yourself to have the result beforehand so you know where your bloods are to help argue your case.
I'd ask GP to do thyroid panel: TSH, FT4, FT3 (they may not do this but ask anyway), anti-TPO to see if you have Hashimoto's and if you can get Vit D endos like to see that.
The endo won't do bloods but may give you a form to get bloods done before your next visit.
If it's the endo I see he's lovely and very open to discussion.

njs030

Hi all, little bit of advice needed as my doctor seems very unhelpful suddenly!
I was diagnosed with hashimotos a few months ago and put on eltroxin, my doctor and I discussed what my optimal tsh levels should be and we agree on 1-1.5. She's been checking and adjusting my meds every 6 weeks yet now she's suddenly decided that a. if it's under 4 that's good enough, and b. even though my tsh has gone up since it was last tested she's changed my meds and I'm to wait 3 months for a retest!!
My levels have been-
12.9. 25mg
5.4 50mg
4.3 75mg
And today back up to 5.6 alternating between 75 and 100mg.

I don't want to make a fuss but surely it should have gone up more?

RentDayBlues

It can take months or years to get a balance and then your body changes and you need to change meds too! My levels have never been higher than 6; at diagnosis. I keep it under 1 as I feel best like that.

3 months is too long to wait with an increasing tsh, I'd be insisting on 6 weeks. Meds need to be increased slowly as overactive is dangerous too

njs030

RentDayBlues wrote: »

It can take months or years to get a balance and then your body changes and you need to change meds too! My levels have never been higher than 6; at diagnosis. I keep it under 1 as I feel best like that.

3 months is too long to wait with an increasing tsh, I'd be insisting on 6 weeks. Meds need to be increased slowly as overactive is dangerous too

Thank you!
I'd be happy if she increased the dose to 100 a day with a blood test in 6 weeks but increasing it only on alternate days seems pointless when it's rising again.
I understand meds should be increased slowly but as you said when it's rising it's too long.

RentDayBlues

notjustsweet wrote: »

Thank you!
I'd be happy if she increased the dose to 100 a day with a blood test in 6 weeks but increasing it only on alternate days seems pointless when it's rising again.
I understand meds should be increased slowly but as you said when it's rising it's too long.

But that small increase may be all you need, it's a strange old disease! I'm now on 150 a day, down from 200 a day, which is a huge decrease but my thyroid is coping. This small increase might be all you need, but do push for a test in 6 weeks

njs030

RentDayBlues wrote: »

But that small increase may be all you need, it's a strange old disease! I'm now on 150 a day, down from 200 a day, which is a huge decrease but my thyroid is coping. This small increase might be all you need, but do push for a test in 6 weeks

Thank you for the help, I rang her in the meantime and she's changed it to 6 weeks. They had made a mistake and missed the middle number where it dropped to 4.3 and went back up and so had thought it was stable...so it makes more sense now!
You're right, it is a strange disease 😋

Clarehobo

Jobsearch16 wrote: »

Hi All,

After being on a waiting list for 3 years, I am finally having my first consultation with an endocrinologist in CUH next week. I am being referred as I have an underactive thyroid. But I believe I have a range of other hormonal issues which I hope they will allow me to discuss.

Could someone please let me know what I can expect from this visit? Will they take blood and hormone tests? I rang my GP and she said that I do not need to take any blood test results with me

I have been taking 50mg Eltroxin for 3 yrs. My GP said she would not increase the dose. I was better off when taking nothing for 6 months but my GP said my levels had risen and I had no choice but to start taking it again and would be on it all my life

Thank you

I am in the same boat, but a few days along.
Just been to my first appointment this week.
I brought a copy of all my bloods going back to the start and including the most recent ones - even though the lab were supposed to send them to her (they didn't).
The endo had sent me out a slip advising the bloods to be completed along with the appointment letter.
Also, I wrote down all the symptoms I had been having - anything and everything can be related so write it all down - with a timeline where possible.
It helped greatly when she was asking me questions as I could just tell her when it started, what the symptoms were, when they worsened or new symptoms appeared. If I had to think of them off the top of my head I would have been in trouble.

Ask the doc's secretary for a print out of all your bloods since it was first flagged. Otherwise, submit a written request - you're entitled to them.
You can never have too much information.

Good luck with the appointment!