thyroid misery

Amazingfun

Hi Wurlitzer,

I take NDT (Natural Dessicated Thyroid) and I found out all about it by joining in with a few groups via facebook, this one has a good few Irish members. They helped me so much : https://www.facebook.com/groups/FTPOUKandEurope/
They are fantastic at answering the kinds of questions you have posted here as well, so I hope it's of some help. Lots of great people /info on this thread as well, just be patient

Ps: Eltroxin did not work for me at all. I switched to NDT after about 8 months on it and never looked back. That was a few years ago now!

njs030

wurzlitzer wrote: »

hi everyone
New to here, I am writing regarding my recent diagnosis of hypothyroidism my TSH was 15 and the doctors prescribed me 25mcg of eltroxin I have been on the meds almost six weeks. But in the last few weeks symptoms have got worse.

On eltroxin six weeks

I want to go natural as I feel the eltroxin is having no effect although it's a low dose.

It takes a while for any medication to be adjusted to the appropriate level-both eltroxin or ndt, 6 weeks is not enough time to say it isn't working - maybe you're right and it doesn't suit you but without giving it a proper chance how will you know?

It takes roughly 6 weeks for the meds to take enough effect for the next set of blood tests so its about now you should be getting them done and after those results your medication will probably be bumped up, then in 6 weeks another blood test and so on.
It had to be done slowly as overmedicating can push us into hyperthyroidism which is dangerous and worse then hypo.

Unfortunately it's a slow process and you do need to be patient, I was diagnosed in November and only back to normal (though borderline hyperthyroid) in the last month or two.

Merkin

Hoping for a little help! I've suspected for a while that I may have some underlying thyroid issue but never had it investigated. I'm now seven months into my second pregnancy and again have inflammation so my Obs/Gynae suggested a thyroid check. The results came back 'normal' but my thyroid antibodies are elevated and I'm seeing an Endochrinologist in the next couple of days. Am I correct that this is indicative of becoming hypo/hyper at a later stage? And what questions should I be asking my Endo? Thanks for any advice.

qo2cj1dsne8y4k

Not medical advice but if you're just bordering hypo/hyper they may want you to see a consultant just for peace of mind. My endo told me when I get pregnant my thyroid dose must be raised by 25% (so if I'm maintaining at say eg, 500mcg a week, that must be brought up to 625mcg)
It could be that the dr didn't know where to start and is just erring on the side of caution.

qo2cj1dsne8y4k

I have a feeling mine is gone insane again. I'm on 150mcg every day. In May my tsh was 347, and I was sent into hospital. They doubled my meds to 100mcg and I started to see an endocronologist (1 consultation and 1 phone follow up). When she tested me that day in the clinic, my tsh was down to just 49. I felt 100% better. She upped me to 125mcg. Had my bloods done 1 month later (August) and my tsh was 21. My meds were upped to 150mcg. I've been doing so well.

However, the past week I've started to notice I have "morning sickness". I'm constantly queasy, actually vomitting on some occasions, my head is foggy and slow. I'm tripping up on getting my words out, and getting my sentences out, I'm very tongue tied even though in my head I know what I need to get out. My voice is gone all raspy and hoarse. After they upped my meds the last phone call consultation she told me I was good until November and they'll get me to do my bloods then and will follow up with me.

I don't think I'll last til then. I feel as rubbish now as I did at my very worst. I am worried I'm back in profound stages and my doctor can't see me until Monday but would I need to go to him or contact the endo clinic directly?

RentDayBlues

Got my bloods done last week, had been feeling tired and despite 6 months of daily workout and eating well I hadn't lost a pound! So doc called today to say my tsh is too suppressed and he wants to reduce meds, I almost cried!! When I questioned the lack of weightloss I was told "maybe that's just the way you're meant to be"

I was so thrown I forgot to ask for my actual numbers so going to request those, will reduce as gp suggested and will get tested again in 8 weeks

goldjogger

EJ78 wrote: »

i was suppose to get the blood test ages ago but i hurt my shoulder and was on a lot of painkillers then got a steroid injection so had to wait for all that to clear up before get tested. i had about three weeks of fatigue at one point, that was hell! thank god that went away.

Do you mind me asking why you had to wait to get your bloods tested after the steroid injection??

qo2cj1dsne8y4k

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

Amazingfun

I am sorry you are having such a tough time lexie, I really am

I hope you get some answers soon.

Wyldwood

Oh Lexie that's dreadful. What a horrible illness this is. I remember that terrifying fear of heart attack with those awful palpitations and have the greatest sympathy for you.
Maybe you need to park in A&E and let them see how unwell you are, you can't go on like that especially if you're vomiting a lot.

The_Conductor

Ask for a referral to a haematologist- and get the haematologist to do a complete workup. The symptoms you're describing may be unrelated to your TFT- often differing conditions may go with one another- and be confused for one another- looking at the symptoms- rather than the underlying issue- can be an exercise in futility. Discuss it with your GP first of all- but its a reasonable course of action to seek a referral to a consultant haematologist for a complete workup.

qo2cj1dsne8y4k

The_Conductor wrote: »

Ask for a referral to a haematologist- and get the haematologist to do a complete workup. The symptoms you're describing may be unrelated to your TFT- often differing conditions may go with one another- and be confused for one another- looking at the symptoms- rather than the underlying issue- can be an exercise in futility. Discuss it with your GP first of all- but its a reasonable course of action to seek a referral to a consultant haematologist for a complete workup.

On my first visit to endocronology, they did bloods for EVERYTHING. Like, absolutely, you name it, it was probably done. All that came back was thyroid and prolactin levels.

I reckon that when my thyroid dips and throws me into profound territory, that's when my puking and heart and everything goes mad, when all this went mad in May I initially thought I was pregnant and that it was severe morning sickness. That's the only way I can describe how it feels. When the levels Started doing a bit better, the symptoms went away. In sept, the morning sickness feeling started coming back, but the past week it's really revved up and it's quite severe now. It just seems to be how my body reacts to the lack of hormone. Can't eat, sensitive to smell, even sleeping is taking a lot out of me. And that's the frustrating part. I KNOW I'll feel better in 6 weeks when the meds start to work. I just don't think I can last 6 weeks with feeling this bad. At least if it was something else the meds might work much faster.

jenizzle

Are you on Eltroxin, Lexie? Have you read up about NDT and whether that would improve your situation? Might be worth asking your GP about it. I thought I was feeling bad but you've put a bit of perspective on how I feel.

There are some good FB support groups that are worth looking into (think someone here may have posted these already):

https://www.facebook.com/groups/HypothyroidUK/ - UK based, but good advice in there

https://www.facebook.com/groups/1543351072559397/ - Thyroid Ireland FB group

https://www.facebook.com/groups/FTPOUKandEurope/ - Another group mostly UK based but good info in there also.

I can only hope you feel better soon. Can't even imagine how you're not just in the hospital refusing to leave until you're sorted.

dollyk

Lexi hope you get sorted.
Different question, Im on 25 mg eltroxin and want to do a 3 day cleanse.
But it seems I cant have cabbage broccoli and kale.
These seem to be the main ingredient for the green juices,
Anyone any suggestions, or will a few juices with these not do much harm ?
Thanks.

Amazingfun

dollyk wrote: »

Lexi hope you get sorted.
Different question, Im on 25 mg eltroxin and want to do a 3 day cleanse.
But it seems I cant have cabbage broccoli and kale.
These seem to be the main ingredient for the green juices,
Anyone any suggestions, or will a few juices with these not do much harm ?
Thanks.

For your consideration:

Why would anyone avoid goitrogens?

It is a myth passed around in the alternative health community that goitrogens cause a goiter, which is an enlargement of the thyroid gland. As Dr. Kharrazian points out in his most recent article, goiters are not caused by iodine deficiency or by eating goitrogens — they are caused by the inflammation from chronic autoimmune thyroid disease (Hashimoto’s). In order to get rid of a goiter, a person needs to address the autoimmune thyroid disease, not remove goitrogens from their diet.

http://autoimmune-paleo.com/goitrogens-why-you-dont-need-to-avoid-them/

qo2cj1dsne8y4k

jenizzle wrote: »

Are you on Eltroxin, Lexie? Have you read up about NDT and whether that would improve your situation? Might be worth asking your GP about it. I thought I was feeling bad but you've put a bit of perspective on how I feel.

There are some good FB support groups that are worth looking into (think someone here may have posted these already):

https://www.facebook.com/groups/HypothyroidUK/ - UK based, but good advice in there

https://www.facebook.com/groups/1543351072559397/ - Thyroid Ireland FB group

https://www.facebook.com/groups/FTPOUKandEurope/ - Another group mostly UK based but good info in there also.

I can only hope you feel better soon. Can't even imagine how you're not just in the hospital refusing to leave until you're sorted.

I'm on eltroxin - James's have me on 200 now, and are putting a camera down. I'll have a look at those pages too... Never heard of NDT

dollyk

Did anyone else on Eltroxin get bad hives on their face and neck.
I never had these before I started this meds ?
Oh and thanks for the artice re not eating cabbage, broccoli etc.
I will read that link now

New Home

Maybe it's completely unrelated, but you might have an intolerance/allergy to one of the excipients.

Bluesquare

Hi Guys,

This time last week I barely knew what a thyroid was now I'm googling frantically trying to find a consultant who can diagnosis the cause of my thyroidism .

I have had a pain in my neck and jaw while - at a guess maybe 5 weeks tops . The jaw pain was keeping me awake at night randomly . I had a couple of nights with crazy sweating and more with tossing and turning . I was losing weight but not excessively whilst eating like a pig but I assumed it was due to a different reason so didn't worry too much About two weeks ago I had flu like symptoms with exhaustion and muscle pains including jaw and neck.

Anyways I had decided to ignore the pain until after the marathon (tomorrow) but on Monday I noticed my neck had started to swell so I thought right I better go to doctor . The doctor on call said I had a temperature and probably a throat infection but thst there was something else going on with my thyroid

So went to gp next day for bloods and was referred for an ultrasound . I had the ultrasound on Thursday and the doctor doing the scan advised me that I had sub acute thyroidism .

I'm the meantime my breathing seemed messed up (I am asthmatic) and my heart felt like it was ready to pop out if my chest .

So back to GP on Friday afternoon - she advised that my thryoid was overactive but she couldn't tell the cause from the scans - it could be as per the scan guy or could be related to immune system and antibodies . She checked out my chest and diagnosed a chest infection which I need steroids and meds to clear before she will prescribe any further drugs . She said i needed to go to s specialist for a proper diagnosis and root cause . My bloods were normal in May. To top it all of my bloods also showed I am iron deficient anaemic !

Needless to say I am not running the marathon tomorrow

Anyways can anyone recommend a specialist that may have experience in my type of case .

The crazy heart rate and anxiety is driving me nuts !

Thanks
BS

Merkin

I was diagnosed recently as mildly hypo and producing antibodies (am now on Eltroxin) and am attending Dr. Hatunic privately in Holles Street, I understand he has rooms in the Mater also, afaik in one of the Georgian basements opposite the Mater Private. His secretary is called Bernadette and is lovely. Let me know if you need me to dig out her contact details. Hope you get well soon.

njs030

Bluesquare wrote: »

Hi Guys,

This time last week I barely knew what a thyroid was now I'm googling frantically trying to find a consultant who can diagnosis the cause of my thyroidism .

I have had a pain in my neck and jaw while - at a guess maybe 5 weeks tops . The jaw pain was keeping me awake at night randomly . I had a couple of nights with crazy sweating and more with tossing and turning . I was losing weight but not excessively whilst eating like a pig but I assumed it was due to a different reason so didn't worry too much About two weeks ago I had flu like symptoms with exhaustion and muscle pains including jaw and neck.

Anyways I had decided to ignore the pain until after the marathon (tomorrow) but on Monday I noticed my neck had started to swell so I thought right I better go to doctor . The doctor on call said I had a temperature and probably a throat infection but thst there was something else going on with my thyroid

So went to gp next day for bloods and was referred for an ultrasound . I had the ultrasound on Thursday and the doctor doing the scan advised me that I had sub acute thyroidism .

I'm the meantime my breathing seemed messed up (I am asthmatic) and my heart felt like it was ready to pop out if my chest .

So back to GP on Friday afternoon - she advised that my thryoid was overactive but she couldn't tell the cause from the scans - it could be as per the scan guy or could be related to immune system and antibodies . She checked out my chest and diagnosed a chest infection which I need steroids and meds to clear before she will prescribe any further drugs . She said i needed to go to s specialist for a proper diagnosis and root cause . My bloods were normal in May. To top it all of my bloods also showed I am iron deficient anaemic !

Needless to say I am not running the marathon tomorrow

Anyways can anyone recommend a specialist that may have experience in my type of case .

The crazy heart rate and anxiety is driving me nuts !

Thanks
BS

An endocrinologist can help but your doctor is going to refer you I guess?
It can take a while for meds to kick in and you do have to be patient and try to relax, googling symptoms and making yourself more anxious really isn't going to help.

Maybe just check that your gp is referring you or what their plan of action is.

r93kaey5p2izun

Madelynn Prehistoric Musketeer wrote: »

I was diagnosed with Hashimotos 2 years ago. I'm on 50mcg eltroxin since. I don't even think about being hypo though - have other more serious health problems so don't really take it seriously. I regularly miss my tablet too. I haven't had my bloods retested since I was diagnosed.

For the past few months I've been feeling absolutely awful - very like you describe Lexie. I essentially have morning sickness, can't stomach anything only the plainest foods, I'm just exhausted and feel like I'm going stupid at times my mind is so foggy. My skin is gone paper thin and just unbelievably dry. I keep getting hot flushes too though I know hypo usually causes cold. For the past couple of weeks I'm experiencing a horrible feeling of pressure on my throat too.

I think I'll ask my GP for my bloods to be done again just in case. Hopefully he'll oblige, though I'll feel like a hypochondriac asking - I always have such vague symptoms. I never really considered it might be my thyroid tbh.

Well I finally got to my GP this week. I've been so utterly exhausted over the past few weeks. I'm getting 8-10 hours sleep but wake up wrecked, then I'm dozing off from 5pm and actually crying with tiredness most evenings as I try to get on with my work. My GP was reluctant to do bloods right away. He said to take a Vitamin D supplement and see how it goes.

Amazingfun

Symptoms Persist Despite Normalized TSH With Levothyroxine


Despite having normal blood levels of thyroid-stimulating hormone (TSH), many patients treated for hypothyroidism with levothyroxine (L-T4) continue to have symptoms, including fatigue as well as a higher body mass index (BMI) and a greater likelihood of antidepressant and beta-blocker use, compared with healthy controls, according to new research.

Read in full here: http://www.medscape.com/viewarticle/870924?src=wnl_mdplsnews_161028_mscpedit_wir&uac=92500HJ&impID=1224287&faf=1

Wyldwood

Excellent article Amazingstuff, all here could say 'told you so'!

Bluesquare

notjustsweet wrote: »

An endocrinologist can help but your doctor is going to refer you I guess?
It can take a while for meds to kick in and you do have to be patient and try to relax, googling symptoms and making yourself more anxious really isn't going to help.

Maybe just check that your gp is referring you or what their plan of action is.

I am in the Drogheda area and apparently the consultant in the Lourdes is booked for 25 years. She advised me to look myself and see where I was covered with VHI then she would refer me .

She didn't really want to give me any prescription until she knew the cause of the thyroiditis because she didn't know how much to give me or for how long . Feeling much better today but my pulse is still nuts .

Wyldwood

Bluesquare wrote: »

I am in the Drogheda area and apparently the consultant in the Lourdes is booked for 25 years .

25 years :eek:

kev22185

I've found this thread really useful so thanks everyone. I'm probably an unusual case in that I'm a man who was born with an under-active thyroid. Seems to be rare enough. Like others on here I've never known what it's like living without hypothyroidism. I really neglected the condition during my teens and early 20's and I feel like I'm paying the price now. Constantly told my bloods are in the normal range despite the fact that I'm always tired and wake up as tired as I was going to bed, despite the sleep I get. To top it all off I get frequent chest infections this time of year which wipe me out further and I'm still recovering from an inner ear infection that left long lasting vision problems and crippling bouts of health anxiety and panic attacks. I'm convinced it's all connected some way or another. I guess I'm lucky that I never experienced issues with my weight or hair like others. at least my problems are hidden but I sympathize with people who aren't so lucky

My annual Endo trip is coming up in March and I think its time to force the issue and request an increase in meds even if my levels are "normal". I've been on 100mcg daily of Eltroxin for the last few years having been on 50mcg from the ages of 12-26. I've had some really bad spells of fatigue recently to the extent that carrying shopping bags made my arms feel like dead weight for the rest of the evening. It's hard to explain why I'm so tired all the time to people who don't suffer from it. no-one understands.

Feels good to write it all down! A good vent helps every once in a while

Emme

kev22185 wrote: »

I've found this thread really useful so thanks everyone. I'm probably an unusual case in that I'm a man who was born with an under-active thyroid. Seems to be rare enough. Like others on here I've never known what it's like living without hypothyroidism. I really neglected the condition during my teens and early 20's and I feel like I'm paying the price now. Constantly told my bloods are in the normal range despite the fact that I'm always tired and wake up as tired as I was going to bed, despite the sleep I get. To top it all off I get frequent chest infections this time of year which wipe me out further and I'm still recovering from an inner ear infection that left long lasting vision problems and crippling bouts of health anxiety and panic attacks. I'm convinced it's all connected some way or another. I guess I'm lucky that I never experienced issues with my weight or hair like others. at least my problems are hidden but I sympathize with people who aren't so lucky

My annual Endo trip is coming up in March and I think its time to force the issue and request an increase in meds even if my levels are "normal". I've been on 100mcg daily of Eltroxin for the last few years having been on 50mcg from the ages of 12-26. I've had some really bad spells of fatigue recently to the extent that carrying shopping bags made my arms feel like dead weight for the rest of the evening. It's hard to explain why I'm so tired all the time to people who don't suffer from it. no-one understands.

Feels good to write it all down! A good vent helps every once in a while

Perhaps eltroxin (T4) isn't working for you anymore. Ask your endo if he or she can prescribe NDT (T3 + T4) for you. The body is supposed to convert T4 to T3 but that process can be impaired in some people with underactive thyroid. If possible see if your adrenal function can be checked. It sounds like you are burnt out.

kev22185

Emme wrote: »

Perhaps eltroxin (T4) isn't working for you anymore. Ask your endo if he or she can prescribe NDT (T3 + T4) for you. The body is supposed to convert T4 to T3 but that process can be impaired in some people with underactive thyroid. If possible see if your adrenal function can be checked. It sounds like you are burnt out.

Certainly what it feels like to be honest. Great advice regarding my adrenal function. With the stress I've felt recently it wouldn't surprise me if my adrenal gland is spent. Frequent panic attacks over the last year or so have resulted in constant dumps of adrenaline. Thanks for the advice

kev22185

I'm finding it difficult to find a chart of optimal ranges for hypo tests. Lots of contradictory figures online. I know normal ranges can vary depending on the lab but surely optimal ranges remain consistent? Does anyone have a link to optimal ranges?