thyroid misery

Clarehobo

Wyldwood wrote: »

Clarehobo, I think everyone here will empathise with your situation as we've all been there. Feeling like a hypochondriac/malingerer is par for the course when you're hypo. Your TSH looks high and you should probably be on a higher dose of meds. However, your FT3 & FT4 results are more important, are they in range? Your low iron could also be a big factor in how poorly you feel.

If I were you I'd be looking for a new GP and demanding a referral to an endo.

Corruptedmorals wrote: »

Clarehobo I would definitely second getting a new GP. First though get the receptionist in the current one to print out all relevant blood tests- you're entitled to these. It will cut down on repetition but you might still need others if your GP didn't request them. It is so worth it to have a GP that's on the ball!

Well guys, just an update.
I got my blood results from the secretary, as advised.
I then got a new GP and explained to her exactly what was happening.
She was amazing and did not hesitate to refer me to the endocrinologist.
I have been to the endo this week and got on well.
Told her my woes and she explained an awful lot of things.
It is the start of a long road trialing dosages but I am glad to start.
I am hopeful for the first time in 4 years.

Thanks for the advice! Sometimes you just need someone to tell you what you already know😀
Will keep ye posted.

inocybe

thyroid misery - my hair is falling out at a frightening rate, are there any supplements to help stop it? It's only started in the last few weeks. I've been on full dose Carbimazole for 6 months now, with undetectable Tsh. My last blood test showed Tsh starting to rise, but still under range, so GP wants me to carry on with full dose of carb. T4 was 100 in November, is now 12. GP happy with results, and I feel absolutely awful. So was prescribed antidepressants. Rant over, sorry

Jobsearch16

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

Hi All,

Just had my first visit with Dr. Tuthill in CUH today and was very disappointed to say the least. Does anyone have any experience of dealing with her?

RacoonQueen

Anyone with an underactive thyroid, how long did it take you to get diagnosed? My sister and mum have both been diagnosed recently and I've a few 'symptoms' of it that I went to the doctor with prior to them both being diagnosed. She told me my thyroid had been checked 'last year and was fine' - I hadn't brought thyroid up at the time but described some of my issues. End of my tether with the seemingly constant fatigue at this stage.

njs030

RacoonQueen wrote: »

Anyone with an underactive thyroid, how long did it take you to get diagnosed? My sister and mum have both been diagnosed recently and I've a few 'symptoms' of it that I went to the doctor with prior to them both being diagnosed. She told me my thyroid had been checked 'last year and was fine' - I hadn't brought thyroid up at the time but described some of my issues. End of my tether with the seemingly constant fatigue at this stage.

I'd suggest asking for a blood test.

Corruptedmorals

I was diagnosed once the bloods came back, taken at the visit where I initially presented with symptoms. I had a history of being borderline under several years previously, and my sister was diagnosed about a year before me. No excuse for not doing bloods. My Dad who has been tested on a regular basis along with his usual bloods suddenly presented with a high TSH. It happens.

qo2cj1dsne8y4k

Need some advice. (Not medical, I'm dealing with that)

I've got hypothyroid, since 2012/2013. At the beginning it caused mayhem with my iron but soon settled down and I was on 50 mmg of eltroxin.
Few weeks ago I got a bad sinus/chest infection. That cleared up but was left feeling very run down, dizzy, vomitting, nauseous, unsteady on my feet, no appetite and constantly on the brink of passing out. Certain smells were triggering feeling ill, thinking about food was making me feel ill, just no interest.
No interest in sex, no interest in anything. I know people's sex drives go up and down but I was literally at the stage where if he never showed interest in having sex again thatd suit me. My skins dry, I'm always cold... Usual symptoms.

After a few weeks of that I went to my dr who did bloods, sent them away and was told it'd take a week for results however rang me yesterday evening, telling me he'd had a call from the lab and that I was to go straight into hospital as it was "profound hypothyroidism" and he said myxodema too. There was no endocrinologist in my hospital so she referred me to another hospital. My tsh levels were 343. Apparently that's not good.

They have kept me since last night, but the medical team are looking after me. They're happy discharging me but will double my dose for 6 weeks and see how it goes then. I know my GP wanted them to assess me and took how bad I was feeling quite serious. Because there's no other issues at play apart from that virus I had, they're happy enough to double my medication and let me home. I'm thrilled to be going home and understand there's no quick fix. But the dr said "we're not too worried, you're alert, you're walking around, you're able to work". He's right, I can do all that but I feel like I'm constantly about to pass out while doing it. I'm going back to my gp tomorrow as the dr in hospital has mentioned that there's a goiter developing and i don't understand what's going on. Feel like both my own and my gps concerns were dismissed.

Again - I'm not looking for medical advice. I'm following the hospitals orders for doubling medication and will speak to my own GP again, but

Will a goiter permanently change my voice? Do you guys feel like you've not been taken seriously or that you're being fobbed off? I don't know, I don't even know why I'm posting all this my head is mushed

cyning

343? How are you walking? Ok so TSH should be between 0.1 - 5. Optimum would be between 2&3.

You need to see a decent endocrinologist quickly. When is that one seeing you again? Doubling from 50 - 100mcg at those levels seems cracked.

You can get fobbed off with thyroid problems undoubtedly. You need to become your own advocate as like you were told if you are functioning you are fine, never mind that it's not at optimum levels.

qo2cj1dsne8y4k

http://i65.tinypic.com/2871wsl.jpg

That's what my dr said, and why he wanted me to be seen ASAP and not wait around. It didn't even happen like that, they kept me all night and until 5 today where I was discharged to go to 100mmg for 6 weeks and then have to go back to my GP for a repeat of my bloods. I did not see the endocrinologist today. I was told by the dr from the medical team it was not nessessary because of how I presented .. Ie, going to work, standing, alert.

Thing is. It's such a struggle. I've been so unwell and just feel although they're acknowledging my thyroid is causing me to be unwell, I feel they're not taking it seriously because I cannot feel like this for another six weeks. It's a struggle to even sit on a bus because I constantly feel like I'm on the verge of collapsing.

I went to the dr on call out of hours last Friday night who told me I was unwell because of "heartburn" and wrote a script for that. I can't eat. I can't concentrate. I constantly feel like I have severe morning sickness but it doesn't matter as long as I'm still standing.

cyning

You haven't got health insurance have you?

That is seriously boarding on negligence to leave you out with a TSH that high without seeing an endocrinologist. have you spoken to your GP since you were discharged?

qo2cj1dsne8y4k

no I only got out at 5 this evening but I'm off work tomorrow so I want to see my GP again before I go back to work. The thoughts of feeling like this for another 6 weeks

qo2cj1dsne8y4k

Also no health insurance. Didn't even have to pay at a and e because I had my letter from GP so wonder if that made a difference

qo2cj1dsne8y4k

So this morning I had 5 missed calls from ED that discharged me yesterday. Results came back, 347 (tsh) and 3.1 (t4) the nursing manager requesting I come straight back in as soon as possible, that the consultant needed to see me and that I must be feeling awful. So I'm back in here, yet again. And the process has started again. Excuses for why I was discharged yesterday. Excuses why the thyroid results take 24 hours to come back even though I had a set done on Monday and Tuesday and the results were made available via a dr letter.

Had to check back in. Go back to triage. Wait in line for another medical dr to see me again, even though the nurse manager told me on the phone they were expecting me and that id be taken straight in, to ask for her or the registrar.

Fed up. I feel like they don't even know what they're doing. Nobody reads anything. Nobody listens. Nobody will help.

inocybe

Lexie I hope you start to feel better soon. Ive been treated badly by endocrinologists too, I hope you get to see a competent one

njs030

LexieOnRale wrote: »

So this morning I had 5 missed calls from ED that discharged me yesterday. Results came back, 347 (tsh) and 3.1 (t4) the nursing manager requesting I come straight back in as soon as possible, that the consultant needed to see me and that I must be feeling awful. So I'm back in here, yet again. And the process has started again. Excuses for why I was discharged yesterday. Excuses why the thyroid results take 24 hours to come back even though I had a set done on Monday and Tuesday and the results were made available via a dr letter.

Had to check back in. Go back to triage. Wait in line for another medical dr to see me again, even though the nurse manager told me on the phone they were expecting me and that id be taken straight in, to ask for her or the registrar.

Fed up. I feel like they don't even know what they're doing. Nobody reads anything. Nobody listens. Nobody will help.

That's appalling Lexie what hospital are you in? Could you ask a family member or friend to advocate for you and make sure you get proper care? It's very hard to fight for proper medical care when we are feeling so bad, pm me if you want a chat x

echo beach

LexieOnRale wrote: »

Excuses for why I was discharged yesterday. Excuses why the thyroid results take 24 hours to come back even though I had a set done on Monday and Tuesday and the results were made available via a dr letter.

Fed up. I feel like they don't even know what they're doing. Nobody reads anything. Nobody listens. Nobody will help.

It is so frustrating but try to concentrate on getting better.
Write down everything that happened and everything that happens, dates, times, who said what to you. You have a good start here already. When you are feeling better write to the hospital complaints department with all the details and keep a copy. Don't rant, just set out the facts. Say you would like an apology for how you have been treated and ask them to outline how they plan to ensure that it doesn't happen to you or anybody else again.

Nobody wants to make a fuss and when you are so ill you can't afford to use your energy trying to change the system but until people speak out the same thing happens again and again. Of course it is a question of resources and staff are under pressure but this type of incident actually uses more resources than would have been needed to do it right first time.

cyning

I know it's awful but I'm actually delighted you are back in the hospital. Echo beach has good advice.

qo2cj1dsne8y4k

They're treating me like a queen ha, (the dr carried my bag, promised me he wouldn't let me out of his sight until we get to the medical team and offered to go see if he could source a dinner if I was hungry)

Maybe they just know how awful I'm feeling now or they know they stuffed up yesterday. Had a tpo anti body test done and am waiting to be referred to the medical team to be admitted now

cyning

They know if anything happened it would be entirely their fault. A TSH of that level is toxic. I'd hope someone got ate for letting you home with that TSH level.

qo2cj1dsne8y4k

They brought me in as urgent today and are now discharging me again because the endocrinologist had a look at my bloods and "isn't concerned". I'm basically brought in for NOTHING except a repeat on bloods done yesterday. Same ****. Waiting around all day to be told nobody is concerned and to go home.

cyning

That's a joke. Do when you are well enough put in a complaint. It seems a bit mad.

qo2cj1dsne8y4k

I kicked up murders said I'm happy to go home with them releasing my medical records because I'll be putting in a complaint to hiqa. Said if anything happens to me in the next few weeks it'll be on them. Now they're admitting me

Wyldwood

Oh Lexie you poor thing having to go through all that stress when you are already in poor shape. I can't imagine how unwell you felt, the highest my TSH ever went was 36 and I felt like death warmed up (not to mention constipation so bad it put me in hospital with a bowel obstruction).

With a TSH that high you are in danger of going into a coma (myxedema). I think the best lesson you have learned is that you have to fight for better treatment all the way with thyroid problems as the medical professionals tend to dismiss them as minor issues.

Do you have someone who can fight your battles for you while you are feeling so unwell? Our health system is in a state of chaos.

Make sure you get printed copies of all your blood results and include copies of these in your submission to the HSE/hospital management.

Hope you are treated properly henceforth. Unfortunately, it may take a few weeks for increased meds to kick in but at least you are being looked after now.

cyning

With TSH of 60 I felt bloody awful too Wyldwood I cannot imagine how bad you are feeling Lexi. I hope to god you start feeling a bit better soon. Look for your antibodies to be tested too.

qo2cj1dsne8y4k

Is that the tpo anti body test? They did that today.
You know I was starting to feel like this was all in my head. Every single step oh this is a fight. Nobody takes this seriously at all.

Irishchick

Hello everyone! So glad I found this thread!

I've been having the following symptoms for 2 months:

Feeling cold
Dry skin
Tiredness
Terrible abdominal cramps (landed me in hospital twice. CT of my abdomen and ultrasound of my womb clear)
Prolonged periods.

The doctor tested my bloods. My free t4 was 7 and my TSH was on the lower end of normal. All of these bloods were fine last December so these drops have happened within 5 months.

Some labs say a t4 of 10 is normal while some say 8.

He said low thyroid should not cause cramping but I've read that it does. The cramps are so bad I cannot walk some days. It's not a bowel issue, no diarrhoea or constipation.

I'm seeing a gynaecologist at the end of the month but I don't think it's a gynae issue. Even the doc said a clear ultrasound ruled out a lot.

My doc says I have to wait another 2 months and have my bloods tested again but I can't stand the thoughts of being most of the summer in pain with no energy.

I also have psoriatic arthritis (autoimmune) and my rheumatology nurse said when you have one auto immune condition you can often get another.

Can anyone tell me if they experienced the same?

RentDayBlues

I have hashimotos, coelaic and scoriassis (sp)? In my immediate family is also rosaria, lupus and alopecia so they definitely travel in bunches!

CathyMoran

They do tend to go in groups - have type 1 diabetes, hashimotos and sarcoidosis for my autoimmune diseases though I have other illnesses too.

Irishchick

Thanks! My doc says I have to wait two months and have bloods tests again before he can begin treatment. I can't imagine another 2 months of this

Irishchick

I saw my doc again today. He decided to put my on 50 micrograms of levothyroxine. Does anyone know how long it usually takes to kick in?