thyroid misery

RentDayBlues

tk123 wrote: »

When did you last have an ultrasound? When I had a mass it was compressing my windpipe and I could feel pressure.

Never! Diagnosed by GP, never referred to endocrinologist until 3 years later when a new GP refused to increase meds, he was an absolute muppet! Offered me antidepressants

I did see a phenomenal one when I was pregnant, maybe I might go see him. My GP has hashi's too and I found him excellent, which take how I feel into account not just the bloods

sajajo

Hi All. I'm new to this thread, and just arrived at a dead end with my GP. He checked my Free's once, and since then just completely ignores when I ask for them. I still feel crap, even with my TSH at 1.3. but I read everything I can get my hand on for the last year and know, this really means nothing. Now I'm on the mission to find a Doctor, public or private who understands the "not so standard" Thyroid patient, who might not do well on Eltroxin (started most of my symptoms after starting this medication), might have deficiencies / toxic overload or adrenal problems. I need TESTS done !! without taking out another mortgage. My GP just basically had enough of me and said he can't do anymore for he and sent a referral to St. Vincent. I read their protocol and it looks like they push the " take Eltroxin and you'll be fine" approach. Plus, they put me on the "Routine waiting list" which is about 9 month. I CAN NOT live like this for another year.. I need a Doc open to NDT or adding T3 meds. If I have to go private, I will. I'd really, really appreciate your recommendations xx

lovelystuff

I'd recommend Margaret Griffin in the Beacon hospital, she's private so I think she's 160 euro per appointment but I find her brilliant. Not feeling well myself at the minute, within a day of my results coming back she's changed my dose. Hope you feel better soon!

sajajo

Thank you lovely stuff. I have seen her mentioned before. I think I might just have to bit the bullet and go for it. I'm just not getting any better Hope your getting yourself sorted again. that condition it just crap :(:(

tk123

RentDayBlues wrote: »

Never! Diagnosed by GP, never referred to endocrinologist until 3 years later when a new GP refused to increase meds, he was an absolute muppet! Offered me antidepressants

I did see a phenomenal one when I was pregnant, maybe I might go see him. My GP has hashi's too and I found him excellent, which take how I feel into account not just the bloods

My GP was the opposite. Handed me the prescription every few months and never did bloods. I switched to a different GP and they were shocked he'd been treating me for so long without never sending me for a scan! Scan showed a cyst which grew into a huge mass all down into my chest. 6 years since the op and my 1/2 thyroid has running the show without any meds without any problems

Wyldwood

After slowly raising Eltroxin to try to tolerate it, 3 weeks ago I reached 12.5/25mcg on alternate days and had been ok until the week-end when all the old familiar symptoms hit in - shaky, lightheaded, wobbly legs, racing heart and palps. Why oh why can I not tolerate any increase in levo after taking 100mcg daily for 30 years?
I'm 5 years into this misery of not tolerating meds now and getting mighty fed up of the affect it's having on my life.
Awaiting the results of recent bloods (before latest increase) and an other 24 hour heart trace. Both endos I've seen haven't been able to give me a reason for the sudden intolerance and just keep telling me i have to increase the dose :rolleyes: I have a gut feeling that my adrenals are at fault as I keep getting adrenaline rushes but I'm told my adrenals are fine as proven by a morning cortisol blood test 4 years ago.

Sorry for the rant just need somewhere to vent frustration.

Hells Belles

Hi,

I haven't read the whole of the thread so sorry if this has been asked before. Do any of the Dublin hospitals test Free T3? I have my bloods done in St Vincents and they just test TSH, FT4 and Total T3. I'm on Day 6 of NDT and will need to monitor my FT3 closely..

Thanks

Amazingfun

Hells Belles wrote: »

Hi,

I haven't read the whole of the thread so sorry if this has been asked before. Do any of the Dublin hospitals test Free T3? I have my bloods done in St Vincents and they just test TSH, FT4 and Total T3. I'm on Day 6 of NDT and will need to monitor my FT3 closely..

Thanks

.

I haven't gone yet but I hear St. James in Dublin does a full panel, including Free T3, for less than 80 euros. It's a fantastic deal. You need a GP referral though.

Hells Belles

Amazingfun wrote: »

.

I haven't gone yet but I hear St. James in Dublin does a full panel, including Free T3, for less than 80 euros. It's a fantastic deal. You need a GP referral though.

Thanks a million. I'm delighted to hear that, even though there is a catch of €80!

Amazingfun

Hells Belles wrote: »

Thanks a million. I'm delighted to hear that, even though there is a catch of €80!

I am just grateful the option is there, like you I've had a hell of a time trying to get the Frees done

Hells Belles

I've just looked up the St James website. Unfortunately, it states:

Only GP Referral letters/Request forms will be accepted from patients in the following catchment areas
Dublin 2, 6, 8, 10, 12, 14, 16, 20 and 22
Patients living in Lucan, Leixlip, Celbridge and Maynooth.

I'm in South County Dublin which rules me out. Why do we have to fight for this?!

Amazingfun

Hells Belles wrote: »

I've just looked up the St James website. Unfortunately, it states:

Only GP Referral letters/Request forms will be accepted from patients in the following catchment areas
Dublin 2, 6, 8, 10, 12, 14, 16, 20 and 22
Patients living in Lucan, Leixlip, Celbridge and Maynooth.

I'm in South County Dublin which rules me out. Why do we have to fight for this?!

Oh yeah, I remember that now

Just give them a call anyways, see what they say, might make an exception or give you an alternative option somewhere else?

Wyldwood

you can get home test kits that include FT3, see Thyroid UK website for details
http://www.thyroiduk.org.uk/tuk/

cltt97

It's James Private Clinic that does FT3, the public hospital doesn't. They send off their blood samples to the UK. Tallaght hospital used to do it in the past, but they require a letter from the consultant, and even then sometimes they didn't do it, so I stopped going there. I now always go to James Private. I think the FT3 alone is about 60 Euros, it's expensive but everything else is cheap enough. Think I typically pay around the 100 Euro mark for everything...
And if you go private, doesn't matter where you live!

Bravobabe

Hi - Can anyone advise (may already be in the tread, but can't find it)?
My wife was feeling unwell in June and suffering from tremors.

The Doctor, put it down to anxiety (she had lost her Father in January and was dealing with probate. A blood test indicated underactive Thyroid and she was put on Eltroxin 25mg per day.

The Tremors have gotten progressive worse and she is in danger of falling over. Yesterday, she visited a different doctor (regular on holidays). The Doctor sent her to the Hermitage Clinic for an MRI (Brain & lower back - for trapped nerve), they were so busy they told her to come back tomorrow. She arrived today at 9am and was told she could not get a bed for an MRI, but they could do blood tests and see a Consultant (Cost A&E - €145, Blood Test €200, Consultant €200) but have to come back for MRE and/or further tests. She decided to try again tomorrow.

Our regular Doctor is back tomorrow, so the choice is to go to Hermitage at 7.30am (to get in queue from MRI) or visit Doctor.

Anybody have any experience with leg tremors - and how were they resolved.
(Our regular Doctor seems quite clued in on Thyroid issues unlike some others)

(I'm also on Eltroxin 25mg per day and my Daughter (20) is on 100/75mg per day)

Thanks for your time?

Hells Belles

cltt97 wrote: »

It's James Private Clinic that does FT3, the public hospital doesn't. They send off their blood samples to the UK. Tallaght hospital used to do it in the past, but they require a letter from the consultant, and even then sometimes they didn't do it, so I stopped going there. I now always go to James Private. I think the FT3 alone is about 60 Euros, it's expensive but everything else is cheap enough. Think I typically pay around the 100 Euro mark for everything...
And if you go private, doesn't matter where you live!

I just rang Tallaght phlebotomy department and they told me they do test for FT3. So I'm going to get my GP to refer me there. If no success with that, will try James Private. Thanks for the info

Wyldwood

Bravobabe, not quite sure what you mean by tremors but I get what I can only describe as internal tremors. I feel wobbly and as if my legs are going to give under me but nothing is visible on the outside. I'm on a very low dose of Eltroxin - 12.5/25mcg alternate days.

I can't believe that your wife had to queue for an MRI for a few days, I've had two this year and both were by appointment, no bed needed. Hope she's had it by now and that she feels better soon.

cltt97

euromedic charged 200 Euros for a MRI and you can get appointments really quickly.

hotwhiskey

Bravobabe: Diagnosed with Graves in June 2014 in really advanced stage. Admitted to hospital. I remember put 600mg PTU fundamentally trying to get up of the hospital bed my legs would shack. No power in legs but after a month the were fine when the meds kicked in.

CathyMoran

hotwhiskey wrote: »

Bravobabe: Diagnosed with Graves in June 2014 in really advanced stage. Admitted to hospital. I remember put 600mg PTU fundamentally trying to get up of the hospital bed my legs would shack. No power in legs but after a month the were fine when the meds kicked in.

I had Graves when I was 3-4 and had the radio treatment - underactive thyroid and other medical issues afterwards.

cltt97

Hells Belles wrote: »

I just rang Tallaght phlebotomy department and they told me they do test for FT3. So I'm going to get my GP to refer me there. If no success with that, will try James Private. Thanks for the info

Just to warn you, I turned up a few times with a letter from the GP saying I'm on T3 and even with documents from the endocrinologist both saying I needed FT3, and I don't know how many times they just ended up not doing it. In the end I had the receptionist from the GP ring. But the constant gamble got on my nerves so now I just go to James, absolutely no problem there and results are ready quickly too.
I think each time it said something like not routinely available, so you have to come with a proper reason and some sort of letter from a consultant.

Staplor

Hi everyone, wondering if anyone can help, I was on 60mg x4 of Armour daily, the price of Armour has gone through the roof, I'm looking at over €115 for a bottle in Tesco which had been around €30 before.

My doc has been good in working with me and prescribing Armour, but what other NDT's are people getting in Ireland? I've just been off the phone to Boots, and Armour is the only NDT they get in, although they were €91 a bottle of it.

So the question I have is what are people on and which pharmacy supply it?

Eltroxin didn't seem to cut it for me (T4 only), is anyone taking Eltroxin with a T3 drug also?

carorueil

Hi,I've been taking ERFA (which is the Canadian version of Armour). I live in France (where you can't get it) so have to go to a doctor in Brussels... and bring it back from there.

From information discussed on Thryoid UK (very useful site by the way), I believe you can order ERFA from Canada once you have a prescription...might be worth checking out.... also every NDT has a different makeup..

Have a brilliant endo in Dublin (private) who refuses to write me a prescription for NDT (because it's banned in France....) I can't find the bill from my recent trip to Brussels but definitely didn't pay 91euros a bottle for ERFA...though not suggesting you make that trip!

Levothryox (Eltroxin) didn't work for me either... one gp put me on T3 only for a month and 1st week great then crashed....

good luck

Corruptedmorals

After being stable on Eltroxin 100mcg for the last 5 years, results this year have been off. Free T4 has ranged from 20.3-24 (23 2 weeks ago) and TSH from 1.61-3.33 (3.0 2 weeks ago). Developed tachycardia last December and went on beta blockers which are working, but nobody thinks this is as simple as swinging to overactive. Have been checked out thoroughly from cardiology and also Falls and Blackout Unit-positive tilt table test yesterday but heart rate stayed steady. They lowered Eltroxin to 75mcg and told me my Cortisol was raised when tested in September but I don't know the figure. T3 is tested about once a year and has always come back normal.

Now awaiting Endo appointment, FABU are referring. I'll stick with St. James privately if possible as they have everything on me including lab results. I've been told I may need imaging, MRI thyroid/brain ?? etc. due to cortisol being raised. Looking forward to this appointment as haven't seen an endo before, but a paediatric one I work with told me previously my lab results were perfect and would not be causing tachycardia...

Wyldwood

When I developed palps/tachycardia after 30 odd years being stable on 100mcg Eltroxin my GP told me it could be related to a number of things other than thyroid such as low iron levels. I presume your doc has done a complete blood work-up, if not that might be the next step.

I hope your appointment with an endo is productive as unfortunately, it's not always the case.

Corruptedmorals

Ferritin is the low side of average, but always in range with some to spare. My GP always checks that and B12 (always fine) with TFT's. The unit in St. James required a full work-up beforehand and then did their own hormone ones and only Cortisol was out of the ordinary.

I take iron every so often, often forgetting since it cant be taken in the morning with Eltroxin and the rest.

Yes I'm hoping it will be a good appointment..

Wyldwood

Well I'm not sure what's going on with my system but just as quickly as it flipped into hyperthyroid mode 5 years ago it has suddenly swung back into normal range.
I'm on 12.5/25mcg alternate days since August and latest bloods show TSH 1.34 (1.4-3.8) & FT4 13.6 (12-22). I feel reasonably well. Have an endo appointment next week so will be interesting to see what he has to say.

inocybe

Wyldwood wrote: »

Well I'm not sure what's going on with my system but just as quickly as it flipped into hyperthyroid mode 5 years ago it has suddenly swung back into normal range.
I'm on 12.5/25mcg alternate days since August and latest bloods show TSH 1.34 (1.4-3.8) & FT4 13.6 (12-22). I feel reasonably well. Have an endo appointment next week so will be interesting to see what he has to say.

I seem to have a pattern of becoming hyperthyroid, taking meds, being ok for a year or so after stopping meds and then levels slowly creeping back up again. I'm subclinical at the moment but going steadily up, and I feel a lot worse than my blood tests say I should

Missymoohaa

This might sound stupid to people but I've been on Eltroxine for about 8 years. Currently I'm prescribed 150mg daily. Now here's the stupid bit, I forgot to refill my prescription and my last intake of eltroxine was last Thursday morning. I've had nothing since. The last two days are the best I've ever felt in a long time. Woke up feeling fine, instead of the usual sluggishness and literally dragging myself about for about an hour before I come to. Constantly tired and muggy brain are the norm until today and yesterday that is. I honestly feel great and "normal" for the first time in years.

My question is, is the eltroxine causing this sluggy feeling or could my thyroid levels by any slim chance have improved. I'm seriously thinking of waiting a few days (without meds) and see how I go. I don't take any other medications, all else has always tested fine.

Amazingfun

Might be a good idea to get bloods done if you haven't for a while? See where yer at?

I got worse on Eltroxin, hated it, only lasted 8 months on it, switching to NDT was a game changer for me.
More energy, brain fog lifted, terrible joint/muscle pain gone, weight I'd put on whilst untreated finally began to shift. I've been on it 2.5 years now.

I'm like you, thyroid replacement is the only thing I am "on"