Autoimmune Thyroiditis

dorcas

Hello folks

Sorry I've not been around for a long time :oops: but I have been looking in to see what's been happening to folks and thinking of you all!

I've just (very) recently been diagnosed with High Blood Pressure and an Under-active Thyroid; the latter caused, I'm told, by the PA now attacking the Thyroid Gland. My doc says that I'll have to stay on Thyroxine treatment for the foreseeable future.

Has anyone else had this diagnosis? and how did you get on with the meds? I started on Levothyroxine 50 on Thursday, to be increased gradually to 150, as needed... so it's early days for me... but must admit feeling very unwell, nauseous, head-aches and generally yucky!

Could be the condition itself .... but I just wondered if any of you have experience of the same condition and medication?

Thanks!

Iris xxx

ps.. Bubba (TKR) is doing great!
......should have a brother by the end of the year.

elnafinn

Hi Iris

I have been taking thyroxine since I was 16 years old after a nodular goitre was removed. I remember starting on half a tablet but do not know what strength that was and was monitored closely until the correct dosage was eventually arrived at. I have a blood test twice a year to test all is ok and lately my dosage has been reduced dramatically from what it was for years.Sometimes I have my thyroid levels tested more than once a year if the gp thinks that any symptoms I go and see him about may be caused by too much or too little thyroxine. Perhaps the dosage is not right for you and may have to be tweaked until it suits you better. How long are you to be on the current dosage until it is checked again? I wish you well, what a nuisance, for you. Another things to contend with, I am sorry.

Love
Elna x

diamond

Hi Iris,Iam on 150mg levothyroxine was diagnosed in 2006with extremely underactive thyroid.They start you off on a low dose and then build it up slowly.You will get bloods checked till you are back in normal range.Hopefully you will feel better in a month or so.i remember the extreme tiredness,headaches,losing my voice and puffy eyes.You will qualify for free prescriptions.Best of luck.xxx

dorcas

Thanks Elna
...........that was really helpful! I don't know anyone with this condition or on this treatment hence me posting here :idea: hearing of others' experience is worth more than reading any textbook!

My GP started me on 50mcg daily, but expects I'll need to move up gradually to 150mcg, with blood tests monthly ... which is no problem as I'm on monthly blood tests anyway.

I've haven't phoned the rheummy day ward yet, so I don't know if it'll affect my being on the Biologic Tocilizumab..... should hope not, as it is helping the PA..... although I'm curious as to why the Thyroiditis should appear now, when I've been on the Biologic infusion for 5 months?
Always something new to learn..

I'm due an infusion on Friday so I'lll speak to them before that...

thanks again Elna ... lovely to speak to you again.

Iris xx

---

Thanks Diamond for your reply too!

I just saw you there.

What you describe is how I've been feeling for some time now... but blaming the arthritis!

It's so good to hear of your experience with the Levothyroxine... did you feel nauseous and headachey too at the start of taking this med?

I answered you on your TKR thread.... good luck for tomorrow... I'll be thinking of you..

Iris xx

diamond

My symptons were due to thyroid started to feel better roughly 4-6 weeks after starting treatment.Thanks for your support but my op was cancelled late this afternoon.There is a few people on this forum with thyroid problems.xxx

julie47

Hi Dorcas

I am ssorry to read that you are feeling so unwell at the moment
I am also monitoring my bp at the moment and have to go back to the nurse in a couple of weeks for her to work out an average reading. (in a couple of weeks because we go away for a few days on wed )

My mum is on bp tablets and they make her feel sickly so perhaps it could be a mixture of both.
My mil is on thyroxine and has been for a good few years but I don't recall her saying that she felt poorly with her med.

I hope that you start to feel better soon
Love & ((((())))))
Juliepf x

freesia

I too am on levothyroxine...
Started on 100mcg then 125mcg then 150mcg.... it can take several weeks for them to "kick in.." and you start to feel the benefit so hang on in there, and you should start to feel a little better in a few weeks...

I tend to know when my levels are out, as I get very tired and very cold and sleepy...

After 4 years I still get regular blood checks, as stress and other things can effect your levels...

I think my meds may need adjusting now - as I've not had them checked since last year and before my knee surgery, and am feeling so exhausted, but that could also just be because of the OA I guess..

Things just seem to go on & on... If it's not one thing it's another...!!

Anyway - wishing you good luck... And don't forget you MIGHT qualify for free prescriptions now too...

Hugs
freesia x

gilly1957

Hi Dorcas.

Im also on levothyroxinne and have been for about 25 years, i take 175mcg daily. With yearly blood tests.
It does take a while for the dosage to be worked out,but once it is,you will notice the improvement. I had my thyroid scanned when i was first diagnosed and it had virtually disappeared because it had shrunk.

Main symptoms for me was extreme tiredness and really feeling a deep down coldness inside my body if you can understand that,and not being able to get warm.

I also have high blood pressure,it is controlled with ramipril tablets,iv not had any side affects, but i do feel like i rattle after taking all my meds,and painkillers in the morning lol.

You will definetly get free prescriptions, probably for life,as its rare to come off thyroxinne once you've had to start taking it.

The receptionist at your doctors should have a form for you to fill in if you ask (noboddy seems to like telling lol ) and your GP signs it, once received by appropriate bodie you will get an excemption card. Its saved me a fortune over the years, as it covers all prescriptions.

Good luck and hope you notice an improvment soon

JuliaHod12

Hi Dorcas

I too take levothyroxine.........have done since 1988...........i was diagnosed with under active thyroid triggered by pregnancy (it took them 7yrs to diagnose!)

As the others have said it takes a wee while to find the right dosage and for you to start feeling the benefits.

I also take BP meds and find that these are the ones to make me headachey and nauseous sometimes.

I hope you find a combination that suits you soon

Julia xx

ps; yes you will get free prescriptions all the time levothyroxine is on the NICE list of essential drugs x

barbara12

Hi Iris
sorry I cant offer any advice, and I am sorry you are feeling so unwell, honestly you get one thing sorted then its something else.
Hopefully with Elnas advice you will feel a bit more easier taking the meds.
And I do wish you well, with it all, how is Wally and friend doing, I hope they are behaving.
You take care xxx

L1985

Hi

I have graves disease which is an overactive thyroid. I had my thyroid gland totally removed six months ago and was put straight on thyroxine tablets. I knowwhen my tablets are either too low or high before havingmy bloodsdone as learnthow my body reacts to both and although u wont think so its far better andsafer been underactive then overactive.

My thyroxine took a while to tweak to get on the right dose but now i am its the best thing i ever did having the op.

It takes six weeks to get the full benefit fromthe tablets so hang on in there. You dont realise how much it can effect your body until your thyroid goes wrong.

Good luck once your on the right dose you will be no different to someone withoutthyroid problems. I wouldnt be able to live now without mymedication.

resusjan

Hi,

Yes - I was diagnosed with RA last year but have had underactive thyroid for about 5 years - not too sure which came first because I had been having joint problems for as many years but didn't get diagnosis of RA till recently.

I started on low dose thyroxine and am now settled on 150mcgs daily - I only have bloods taken for thyroid levels once a year now and have had no problems at all with the thyroxine.

Hope you start to see some improvement soon
Jan

mp1952

Hello Iris

Glad to to hear that your TKR has been a big success, but so sorry to hear about the blood pressure and thyroid problems. I cant help with either of those, I'm afraid, but i see you have had some good responses from other peeps.

i do hope this wont affect the toxciluzumab...can you let us know what the Rheum Dept advises about that?

Marion x

L1985

Just remembered to say you should take your thyroxine in the morning and not eat for 20mins after. I was told this by a few endocrine docs so just something else to consider

dorcas

Thank you again Diamond (so sorry your op was cancelled :roll: ) and thanks so much JuliePF, Freesia, Gilly, Julia, Barbara, L1985, Marionand Jan for your replies... they are really appreciated.

It's so reassuring to read that so many have this condition to.... (although I wouldn't wish it on anyone :!:) ...... and that your experiences are that once on the optimum dose it responds well to treatment.

I seem to have had classic symptoms.... forever cold, very tired all the time with no energy to speak of! I was also worrying as my memory was suffering; my doc assures me it's another symptom of under-active thyroid and will 'get better' once the T3/ 4 levels? are back to normal.

JuliePF So nice to see you post here! thanks for the info about your mum and MIL. Is your BP being treated? or are you still at the monitoring stage? I hope you are recovered fully from your neck op? ...enjoy your few days away.... hoping you have a lovely time and doing something special!

Freesia thanks for the reassurances. It is difficult to know what is arthritis symptoms and what is something else isn't it? it is good to know what can affect it and also recognise when symptoms return... so I'll keep that in mind , thanks! How is your knee doing post op?

Gilly I see you have high BP with under-active Thyroid too. :roll: I haven't started on BP tabs as doc wants to stabilise the thyroid first.
The info about free prescriptions would have been very welcome prior to 2011 when prescription charges were still in place.... but in Scotland we all get free prescriptions now. I wish it was the same for everyone. :idea:

Julia WoW! 7 yrs before it was diagnosed that's awful! you must have been really struggling with the symptoms :roll: ... and managing to cope with that and a little baby !! I hope you are now being well looked after by your docs. :!:

Barbara how lovely of you to post. Wally (Wrist replacement for folks who don't know me ) and Bubba (TKR) are doing really well.... TT (finger joint replacement) had a wee set back when I had another arther flare and unfortunately the tissues around the joint are calcified, stopping him moving...... but he is without pain! so it's all still good. I expect to be put on the ortho list for the second TKR in October. I opted to wait as I needed time to recover from previous surgeries etc..
How are you?

L1985.. Yes, I read on the net how difficult it is to have an over-active thyroid and the problems/ health issues that it can cause. :roll: I am so glad you have had a successful outcome from the surgery, and managing the balance of meds to keep you well. Thanks for your post and reassurances about the timescale for the thyroxine med working.

Jan thank you too for sharing how it has been for you with having thyroiditis..... and I can well understand that one condition can easily mask another. :!: I am glad you are doing ok and hope that the RA is under control?

Marion ... lovely to catch up with you again! thanks for your kind message and good wishes. I'll be checking things out with the day ward on Wednesday before I go in for my next Tociliz infusion. I'm not sure what they'll suggest. A pre-requisite for having the infusion is that you are feeling well... and honestly I'm not at the moment, so they may ask me to delay the next infusion. I will let you know what they say.

Thanks everyone.....

love to all,

Iris xx

dorcas

Thanks again L1985

Yes I am taking the levothyroxine first thing in the morning before food. ... my doc was very insistent!

Iris xx

CJHunter

Just sending positive vibes and some of these (((((X))))) Dorcas, Take care, xx

ironic

Hi Dorcas!
Lovely to see you but so sorry that you have another lot of meds to contend with. My sister has like Elna been on tables since she was sixteen and has coped very well with them.
I do hope things settle down for you soon as it is a worry with any new med but knowing it is for the long haul does not make it any easier.

Hugs and I hope the side effects ease off soon. Not nice feeling yucky all the time, you must have been struggling for a good while.

I x

L1985

My memory was terrible when my levels went under its fine now so im sure yours will be too once the meds are right. Its one of those annoying things that you have to be patient with. My thyroid doc at the hospital was a lovely guy and had the time to explain what was going on. Once they have found the right dose for you then all those annoying symptoms should go....although im still on the cold side even though my levels are bang in the middle so some of it might be just the way you are. If you start having palpitations or feeling edgey then for me its a sign that things are too high....obviously dont adjust your dose without seeing your gp.

tillytop

Hello Iris

I am so sorry about your latest diagnoses. I really hope that the pills do their stuff and that the initial unpleasant side effects disappear as your body gets used to them. Thinking of you Iris - and thank you so much for taking the time to post on my thread when you are struggling so much yourself.

Love Tillyxxx

freesia

Interesting posts here....

I was always told to take my levothyroxine in the morning, but never mentioned to me before - about taking it 20 minutes before food...??

I normally take ALL my medication's in the morning with my breakfast... But...
I'll have to try this out.... does anyone know why we should wait 20 minutes before eating...??

Mind you I take so many medications - I feel asthough I've had my breakfast afterwards LOL

L1985

Freesia - i was told it was to do with absorbing it. My mum hasanunderactive thyroid andits not written on her medication label but its written all over mine. Maybe itsbecause i have no gland at all? I wouldnt worry if your levels arenormal then stick with whatyour doing be worse to mess around with it and mess your levels up if that makes sense. My mum also takes her,s at night with her tea lol she doesnt seem to get any thyroid symptoms whereas i was plagued with symptoms.....and still can be if my levels are not right.