thyroid misery

Wyldwood

zippy84 wrote: »

Journal of the American Medical Association - Article in favour of night intake.
http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/776486

That's a fascinating article and very much reflects my experience with the meds. I'm definitely staying with nighttime.

Curlysue76

Hi all. Haven't posted here before. I had my thyroid removed Aug 2015. I started taking my meds in morning, as that was what my mum and sister did. They're both under active but haven't needed theirs removed. I wasn't under before removal but borderline for few years.

Started ok but then started getting dizzy spells, vertigo and very tired. Would need a nap most afternoons. Read online about taking meds at night and thought it would be worth a try. Energy levels definitely improved, haven't had any vertigo since and only get dizzy spells if I feel like I have a virus or cold coming on. On 100mg 5 days/ nights and 125 other 2.

kev22185

Hi everyone,

I’m on 100mg of Eltroxin and have been for years now (as mentioned on here before). Bouts of fatigue and almost continuous muscle and joint pain along with joints cracking everywhere. Legs, back, neck, fingers, ankles, hips etc (I’m only 32!). Anyway I’ve an Endo appointment in March. I see here once a year and I’m anxious to get the most out of this upcoming meeting as she’s expensive. Got bloods done yesterday, just waiting on results. Last results (Oct 2016)

TSH – 1.29 (Range 0.27 - 4.20)
Free T4 – 19.3 (Range 8.5 – 22)

They wouldn’t test my Free T3 as my TSH “was within the range”. A phrase I’m sick of hearing tbh! Interested to see yesterday’s results as I’ve switched to taking the tablet in the morning rather than at night. I’ve still no idea what “optimal” is but if those results are “optimal” then they aren’t my “optimal”.

Ashamed to say that I’ve had an underactive thyroid since birth and last months results were the first time I actually asked for the results and lab ranges. I’m going to micro manage this from now on.

wandatowell

Wyldwood wrote: »

Wandatowell, I'll echo what notjustsweet says. I was on a very rocky road with my thyroid for 5 or 6 years after 30 years of stability, and it's only since I switched to taking Eltroxin at night that I've improved. Still not back where I was but a lot better.
I believe it's something to do with better absorption at night and coinciding with the natural rise in TSH in the early hours of the morning.

You need to be fasting for about 2 hours before you take it.

A referral to an endo might be in order if you don't feel better within 6 to 8 weeks

notjustsweet wrote: »

Wandatowell that's horrible how poor thing. Like Lexi said do trust your doctor and stick with it.
You mentioned stopping and starting eltroxin and that could be why you feel so bad maybe? One thing I found really helped me was switching it to a night time tablet. I don't know how or why it makes a difference but it does and not having to avoid food etc for a while after is lovely!!

Hopefully you'll feel better soon but this is the place to chat anytime.

LexieOnRale wrote: »

You poor thing, I know that numb feeling. Last summer my thyroid was pretty bad and I felt so crap I didn't even realise how crap I felt or how sick I was. I went from 50 --> 100 --> 125 --> 200 where I am right now and although it's taken 7 months treatment of eltroxin I feel normal enough now to realise I'm a bit sad or a bit down, my head isn't as foggy and my feelings aren't as numb. I think the longer I am in eltroxin and the more energy I have, the better everything will get, my mood included.

Trust your doctor for the time being. There's nothing wrong with needing to take the lexapro. If it will help you feel better, where's the harm? I'm sure it'll be all up from here, stick with it and maybe ask for a referral to an endocrinologist

wandatowell wrote: »

Kinda a long story. I had a subtotal thyroidectomy done in 2008. Felt fine since then as I was taking eltroxin on and off. If I felt sh*t I'd start taking it then I'd stop after a while as I'd start finding it hard to sleep and other such thyroid things.

This past year has been very very hard. I'd say I felt really bad till November and since then it'd been even worse. I didn't know what I was feeling but the only way to describe it is sad. Numb, sad, very weak and tired but mostly sad.

Doctor currently has me on 100mg of eltroxim one day and 50mg the next. Also I'm taking lexapro to help with the times I'm feeling sad.

I'm not sure the lexapro is good for me but I'm only taking it two days and GP said to stick with it. It makes me feel anxious. Scared to leave the house or to answer the phone.

I'm not one for blabbing but I'd love to know other people's opinions.

Thanks.

I posted here just over a month ago. I didn't get back to ye at the time but I read every thing that was said and took on board the encouragement.Thank you to ye all for that.

I'm happy to admit that I'm feeling better. Been taking my eltroxin religiously at night. Haven't missed a beat. I had a 5 day trip to Edinburgh for the rugby match but the trip was just too much too soon. After the 3rd day of the trip I started to get anxiety. Didn't want to leave the hotel room so was really happy to get home.

My sadness has lifted a bit but not sure if it's the Lexapro or the eltroxin. GP says my thyroid levels haven't improved significantly yet but he's content to keep going as I have improved somewhat.

The lexapro is a concern for me. There are times when it hits me for 6 and i cannot do anything. Im completely drained. It's not underactive thyroid tiredness (well it feels different to me) it's more like I've got a tonne weight resting on my eyelids and I have to close my eyes. Like I said it feels different to me.
Aside from the tiredness or whatever it was that I was trying to describe I still get these very nervous feelings and a "stomach" turning sensation. I'd call it an impending doom feeling.

We have access to a psychiatrist in my workplace and my GP has arranged that I see him. To try come up with a better solution than the lexapro.

I've spoken with my family about my feelings. The funny thing was I didn't have a clue of the strength of the support network around me. My family is there for me if I need then. That feeling is amazing. A problem shared and all that.

Anyways I think that's about it. I'm getting there hopefully. When I think back to how I felt when I first posted in January I feel proud of myself. Thanks for your time. If anyone has any experience of what's it like with a psychiatrist I'd love to hear. Just about the process of it all. If you would prefer to PM the please do so.

Take care.

njs030

kev22185 wrote: »

Hi everyone,

I’m on 100mg of Eltroxin and have been for years now (as mentioned on here before). Bouts of fatigue and almost continuous muscle and joint pain along with joints cracking everywhere. Legs, back, neck, fingers, ankles, hips etc (I’m only 32!). Anyway I’ve an Endo appointment in March. I see here once a year and I’m anxious to get the most out of this upcoming meeting as she’s expensive. Got bloods done yesterday, just waiting on results. Last results (Oct 2016)

TSH – 1.29 (Range 0.27 - 4.20)
Free T4 – 19.3 (Range 8.5 – 22)

They wouldn’t test my Free T3 as my TSH “was within the range”. A phrase I’m sick of hearing tbh! Interested to see yesterday’s results as I’ve switched to taking the tablet in the morning rather than at night. I’ve still no idea what “optimal” is but if those results are “optimal” then they aren’t my “optimal”.

Ashamed to say that I’ve had an underactive thyroid since birth and last months results were the first time I actually asked for the results and lab ranges. I’m going to micro manage this from now on.

Has there been a time that you've felt good and if so what were your levels?
As I've mentioned numerous times my gp is amazing and also has hypo so is very understanding and works on symptoms as well as numbers.
I feel best with a tsh of 0.10-0.20 which is slightly hyper but when I move back up even as far as 1 I start getting fatigued, dry skin and hair etc so we have agreed that's my perfect numbers and we aim to keep me there.
I've joined the thyroid Ireland group recently and a few of the members on there also keep their tsh levels that low so its not just me!

Perhaps you need to find what your perfect number range is?

kev22185

notjustsweet wrote: »

Has there been a time that you've felt good and if so what were your levels?
As I've mentioned numerous times my gp is amazing and also has hypo so is very understanding and works on symptoms as well as numbers.
I feel best with a tsh of 0.10-0.20 which is slightly hyper but when I move back up even as far as 1 I start getting fatigued, dry skin and hair etc so we have agreed that's my perfect numbers and we aim to keep me there.
I've joined the thyroid Ireland group recently and a few of the members on there also keep their tsh levels that low so its not just me!

Perhaps you need to find what your perfect number range is?

I think you've hit the nail on the head really. I need to find out what is optimal for me....I've never really paid attention to how I've felt when getting bloods done through the years. To be honest I can't remember a time I didn't feel some symptoms but certainly they've varied in severity through the years. I think I felt better back in October when I got my tests done, than I do now so it'll be interesting to see the difference in the results.

Thanks for the response.

njs030

Optimal is the word I was looking for!!!

goldjogger

Hey, my knowledge of underactive thyroid is pretty limited, I can't seem to find what I'm looking for.
I was told I had an underactive thyroid 6 months after having my first baby, July 2016 is when I got told, I had no specific symptoms, but was tested as I had a bad skin reaction to something and I'd say doc was just doing bloods for everything.
At the time of testing I was probably 3-4 days in to taking 8 steroids a day for the flare up.
I have been very sporadic at taking the eltroxin. Last week I got my bloods done, I'd say I hadn't taken eltroxin in 3 weeks and my bloods have come back normal. All my bloods since getting diagnosed have been normal, I feel fine, and also waiting to get checked for coeliac disease on Tues.
Is it possible to have an underactive thyroid temporarily? Or to get a false reading because of the steroids?

Wyldwood

goldjogger wrote: »

Hey, my knowledge of underactive thyroid is pretty limited, I can't seem to find what I'm looking for.
I was told I had an underactive thyroid 6 months after having my first baby, July 2016 is when I got told, I had no specific symptoms, but was tested as I had a bad skin reaction to something and I'd say doc was just doing bloods for everything.
At the time of testing I was probably 3-4 days in to taking 8 steroids a day for the flare up.
I have been very sporadic at taking the eltroxin. Last week I got my bloods done, I'd say I hadn't taken eltroxin in 3 weeks and my bloods have come back normal. All my bloods since getting diagnosed have been normal, I feel fine, and also waiting to get checked for coeliac disease on Tues.
Is it possible to have an underactive thyroid temporarily? Or to get a false reading because of the steroids?

There is a condition called post-partum thyroiditis where the gland can swing high and low and is usually temporary. I don't have any experience with this condition as I've had thyroid problems since I was a teen. Your doctor would be the best person to chat to about this. It's possible you no longer need the meds.

Cheezel

Wyldwood wrote: »

Zippy84, it was on the recommendation of my GP that I switched to taking the Eltroxin at night. I had gone very underactive and couldn't tolerate the amount of thyroxine I needed to get to a comfortable level so she suggested trying nighttime dosing without an increase in the actual dose. I have to stop eating at nine and then take the meds at bedtime (usually about 11) with a drink of water. My bloods improved and brought me into normal range, although some symptoms persist.

As I already explained, she said there's a natural rise in TSH that occurs in your body during the night so it makes sense to take the meds to coincide with that.

My endo also said it makes no difference when you take it, or if you take it with or without food as long as you're consistent and always do the same.[/quote

Not sure if im doing this right..hoping to talk to Wyldwood. Hi all ive Hashis hypo..was dx 15yrs ago accidentally when all my hair fell out in 3 wks. Ive been stabile on 100mcgs until last yr apart from increases during pregnancy although i now realise i was still symptomatic all those yrs. Freezing hands feet v dry skin alopecia totalis always tired. This time last yr i had early onset menopause and all hell broke loose. Ive been attending an endo in Tallaght and have been so ill since this occurred but was putting it down to reaction/sensitivity to hrt as i couldnt really tolerate it. I wasnt improving on hrt and my gynae told me i had an anxiety problem!! After 6mths of being dogsick and no one helping i did dev anxiety so tried anti ds...no real improvement in physical wellbeing. I attended an immunologist who confirmed that hrt is unsuitable/aggravating to an individual as autoimmune as me and put me on a daily antihistamine that cleared up the fill body hives i was experiencing due to the hrt. Apologies for long post but im complex. Saw my endo in Oct...never rang me with results so i assumed all well and still wondering why i feel like im dying. Saw her again in Jan..had to ring 3 wks later for results to which i was told my thyroid looks like its resisting meds and has 'never' been normal since attending her 6 mths prior!!! Ive gone from working a 60 hr wk busy mum to 3 to being literally bedbound. My 80 yr old parents now live with me doing everything. Ive been told by my endo to take a hormone holiday for 6 wks to see if we can get clearer reading. My TSH as far as i know was 17 with Ft4 22 i think and i think she said ft3 normsl??..she briefly mentioned over the phone whilst advising to come off all meds. Im off 2 wks now but btw nausea headaches heartburn and extreme fatigue ive no life. She has contacted some experts in Oxford to see if further tests required and for opinion on what to do next. I went out for an hr today with my 3 yr old and have been in bed since. I feel like my body is slowly dying from the inside out. Can anyone help? Do u think Armour might help?? Any advice welcomed.

Cheezel

LexieOnRale wrote: »

I can't cope with this anymore

Dublin reckoned my condition was stable until end of November. Since mid sept I've been feeling absolutely 100% rubbish.
Took a chance went back to get bloods done.
Results came back on Monday
T4 below 3.8 (apparently they don't measure below that, so I don't know exactly how low it is)
TSH 92
From tues morning meds up to 150mcg.

I am so unwell. I can't deal. I'm waking up from sleeping to vomit. I'm seeing things that I know aren't real. I'm on the verge of tears all the time. I have no energy. I constantly feel like I've spent hours bawling, always have that scaldy exausted feeling in my face. My vision is gone, everything's blurry. No appetite. I literally just want to sleep, and only get up to pee or vomit. My heart feels like I'm on the verge of a heart attack, those pulsing palpatations. My voice is just raspy and hoarse, I don't even sound like myself anymore.

I'm dragging myself out and about because I don't want to give into that, I don't think it would be healthy for me to stay in bed feeling this bad.

Yesterday I had an ultrasound on my thyroid and was extremely unwell following it. I called the nurse in my GP surgery, she reckoned I needed to go to a+e, and went to check with my GP. She told me to come straight in he wanted to see me, but that he said it's just a matter of taking the meds and when the level goes up, I'll feel better. He had upped my meds on mon evening but after seeing me yesterday he upped them to 200, and thinks they'll need to go up another 50 in 4 weeks time.

I feel he's trying his best. He read and re read my letter from James's and was at a loss at why they cut me from 150 down to 125. He thinks maybe they made a typo.

Eitherway, I'm just so sad.
I feel beyond awful, I can't even explain it. I feel, for all his intentions, my dr is out of his depth. He clearly has never had someone affected so bad by this because he's been my dr for over ten years, has seen all sorts of crap. The death of both my parents, personal trauma, being diagnosed with epilepsy, but I always pull myself together and I'm quite strong, but I don't feel strong anymore, and He's coming across as having no effing clue what to do next.

He acknowledges I'll feel better once my meds are adjusted, but this will take 6 weeks. He agrees I'm too sick to leave like this for 6 weeks. I am waiting to hear back from Dublin. But I just have no idea what to do next. I honestly can't cope with it any longer. My body feels like it's shutting down

Lexie i 100% feel your pain as im in the same boat only my thyroid readings are screwed up with tsh showing hypo and ft4 reading almost hyper. Endo doesnt know what to do. Has contacted expert in Oxford but in meantime im to come off meds for 6 wks to see if we can get truer meaning
She reckons my body has become resistant to thyroid meds. Ive been dealing with this since last yr and if it wasnt for my hubbie and 3 kids i can honestly say i wouldnt want to be here. I really hope you feel better soon xxx

Wyldwood

Cheezel, my heart goes out to you, I know what you're going through.

I'm no medical expert and can only speak from my own experience of developing intolerance of Eltroxin. Your bloods aren't showing typical with your high TSH and high FT4, usually as one goes up the other goes down. I wonder if your doctor has suggested you may have a problem with your pituitary gland as that is what's responsible for the TSH production? Have you had a thyroid scan to see what's going on there? Are all your other bloods ok, iron, ferritin, vit D?

Be careful while you're off the meds as when I came off them I got very hypo after 5 or 6 weeks and ended up in hospital with a bowel obstruction due to sluggish system, so plenty of fluids and fibre.


You need to push for as many tests as you can get as you obviously can't go on like this.

Cheezel

Wyldwood tks for ur speedy reply. Im a medical scientist myself so am very familiar with my thyroid results until i changed endo's last yr on a recommendation from a colleague. If i felt a bit off id just get my blds done. However I now have no access to my results so am in the dark per say. She did a gauntlet of tests last Oct but all were normal as far as i know?? I will request iron , ferritin and Vit D again as it would have been 6 mths ago since ive had them done. Im not sure if i will survive 6 wks off meds in fairness and tks for advice. Can i ask how you were feeling when you became resistant, what worked for you and how you are now?? I just want to feel well again and need to know there is some hope to be had. Again tks so so much for replying.

Wyldwood

Cheezel, firstly, I don't know why you have no access to your results now as you are entitled to a hard copy of all results for bloods, scans etc., so maybe ask. You need to see where in (or out of) the range you are and it's important to be able to see where you are historically.

I don't know if what happened to me was resistance or plain intolerance of the drug. 6 years ago I developed hyper symptoms such as weight loss, high pulse rate, racing heart, palps, jitters, fast digestive system. My doc initially tried to gradually reduce the dose but that achieved nothing and 6 months later decided to take me off the Eltroxin entirely for 6 weeks to detox my system. Then it was a gradual re-introduction of the meds starting with 12.5mcg daily and slowly increasing as I felt I could tolerate more. Currently, I am on 12.5/25mcg alternate days but about to increase by 12.5 a week. That's all I can tolerate, any larger increase sends me over again. My bloods are in range now, albeit barely, but I don't feel great. Lots of palps, tired and sluggish. I lost a stone when I went hyper 6 years ago and can't put on any weight although I need to. My iron levels are not optimal either although in range.
I've had thyroid scan, heart monitor twice, stress test, MRI, every blood test going but they can't find the cause. I don't have Hashi's but did have Graves as a teenager and had a thyroidectomy. The recent scan showed that my thyroid has regrown a lot of tissue so the best theory the endo could come up with was that it's firing thyroid hormone out intermittently and causing hyper symptoms then.

I don't know if that's any help to you. i hope you get answers soon.

barneyeile

Hi all,

Have an underactive thyroid for over 15 years now. Recently have been having craving for salty food i.e. bacon, crisps etc.

Has anyone else had this experience?

Thanks:)

Wyldwood

I think I read somewhere that craving salty/savoury foods is a symptom of adrenal problems, which of course, go hand in hand with thyroid. Maybe talk to your doc & get cortisol levels checked?

wandatowell

Wyldwood wrote: »

I think I read somewhere that craving salty/savoury foods is a symptom of adrenal problems, which of course, go hand in hand with thyroid. Maybe talk to your doc & get cortisol levels checked?

I'm thinking of changing doctors. Well, the one I have is ok (free due to work) but he's content to just wait for me to get an appointment with an Endo but that could be months away.

If I was to go to see another doctor can I just request a full battery of tests to cover thyroid, posible adrenal issues and any other health issue I may or may not have or how does it work?

Rattlehead_ie

Hey guys,
Going through a serious case of depression and lack of energy/motivation/sex drive at the moment. I'm prone to these with such a high daily dosage, but usually B12 injection and time gets me out of it.

My most recent test (3 weeks ago) shows all levels normal, so considering its been 16 yrs managing this since I went to the Endo, I think I should maybe go again? Doc, doesn't see the point as its being "managed" and my levels all seem good.

Merkin

Do you seriously mean it's been sixteen years since you've seen an Endo?! If that's the case you should self refer right away. I can't believe your GP thinks otherwise.

My bloods came back 'normal' recently but I had a couple of symptoms to suggest otherwise so I saw my Endo who increased my dose immediately. He said that normal is very broad and what is optimum for one person differs hugely in another person due to various factors so he takes a very broad view and places a lot of emphasis on how you're feeling rather than just looking at blood results.

He upped my dose to 75mg as he said that he likes all women of child bearing age to have a TSH well below 2 while mine was nearer 3 so those tweaks are well worth making.

If you want to PM me I will send you on my Endocrinologist's details, I really like him and he has been very kind to me.

qo2cj1dsne8y4k

My tsh is back up at 291 as of results today. T4 is below 2.8 (think that's the lowest they measure). Have appointment with endo next week but I'm completely fed up feeling like this. I cannot control this at all

Graces7

A friend in Canada; thyroid tests always negative although all the symptoms were there. The weight gain was dangerous and as she had resulting heart issues the usual thyroid meds were contraindicated.

I read round on the UK thryoid forums and a few had similar problems re medication. Some recommended natural thyroid extract.

It stopped the weight gain and helped other issues.

wandatowell

I got letter from my endo a few weeks back saying I was on a waiting list for THE waiting list. Anybody in Cork experiencing something similar?

jozi

Anyone recommendations for a good gp with thyroid experience? It's not for myself or I would recommend her to my doctor in ranelagh but she's looking for someone around Drumcondra/city centre area

The_Conductor

jozi wrote: »

Anyone recommendations for a good gp with thyroid experience? It's not for myself or I would recommend her to my doctor in ranelagh but she's looking for someone around Drumcondra/city centre area

Think your friend is better off getting a referal to a endochrine specialist. GPs- by their very nature, are general practitioners- and don't tend to specialise in specific issues. Personally I see Donal O'Shea in Loughlinstown- its a bit of a hike, but its worth it.

TherapyBoy

Plenty of endocrine people in Beaumont hospital, which is pretty close to Drumcondra. If it's closer to the city centre I used to see an endocrinologist attached to the Mater Private on Eccles Street, also not too far from Drumcondra!

Rattlehead_ie

Merkin wrote: »

If you want to PM me I will send you on my Endocrinologist's details, I really like him and he has been very kind to me.

Sorry, I only saw this message and was travelling. I think I might PM you to get it. I had a good one all of 16 yrs ago, but I remember him passing quiet early on in my treatments.

Quoideneuf

Hi. I'm looking for a good thyroid doctor that will prescribe NDT (either Westhroid or Nature-throid - maybe not Armour, as I hear they've changed the composition and it's supposedly not as effective now). I'm not doing so well on Eltroxin and my GP says I'm stuck with it. I'm based in the Northwest, but willing to travel.

Rosie1983

Quoideneuf wrote: »

Hi. I'm looking for a good thyroid doctor that will prescribe NDT (either Westhroid or Nature-throid - maybe not Armour, as I hear they've changed the composition and it's supposedly not as effective now). I'm not doing so well on Eltroxin and my GP says I'm stuck with it. I'm based in the Northwest, but willing to travel.

Hi I go to see Dr Margaret Griffin in the Beacon Hospital in Sandyford. My last endo retired - Dr Barragry. I used to see him in Charlemont Clinic and then the Beacon Consultants Clinic. He was the one who agreed to put me on Erfa after 2 years on Eltroxin with no improvement and much frustration!

Dr Griffin also has clinics in Bon Secours and Clane. I was already on Erfa Thyroid for about 3 years when I started to see her a year ago, so she was happy for me to continue on it. I think I'm her only patient on it, but she does also prescribe Armour. Good luck! Don't let anyone tell you to stay on anything if you don't feel better. Labs can be in the "normal range" and you can still feel like crap. Only you know if you feel well. Be your own best advocate. Don't settle for just ok. We all deserve to feel well!

rojaels

Hi all..is there many of ye on eltroxin and thybon combined..im on both and live in west of ireland but never get free t3 tested..does anyone know if endocrine department in vincents does free t3 testing..have been referred there...and an feeling so unwell any help will be gratefully appreciated..

rojaels

Hi all..how many of ye are on thybon and eltroxin..i am on both but still not well..endo wont test free T3...living in the west of ireland..been referred to vincents endocrine..has any body any advise on endocrine in vincents..cant believe that i am in the category as my endo here says that im in the 25 percent of people who will always have symptoms..