thyroid misery

NiceyNice

LexieOnRale wrote: »

Exactly. Your thyroid needs to be on its best behaviour for pregnancy, apparently. Ideal tsh for women of child bearing age (according to consultant endo I see in a Dublin hospital) is 1. If for example I am well and healthy on 100mcg of eltroxin I will need to up that to 125 if I'm planning on having a baby. She told me that pretty much straight away in my first consultation and explained thyroid of woman is so important for brain development of child.

For a GP (who is by no means a specialist) to come along and say Ara sure tsh doesn't impact on pregnancy is a bit mad/irresponsible. If that was me I'd be listening to specialists unless I felt better qualified and versed in risks and medication than an actual specialist.

Either way it's no skin off our nose whether she stops taking it or not, completely her decision, but I think it's quite foolish on her part to disregard anything a consultant has said to her on the back of what a GP she's never seen before said in a brief consultation

I know the GP very well. He's head of the surgery I attend and he cited two recent studies when telling me that it may not have such detrimental affects on early pregnancy as first thought. One of the studies was carried out by one of his members of staff.
He is a champion of continuous professional development.
Sorry, I can't have you writing him off as a random GP. I value his opinion.

njs030

NiceyNice wrote: »

I know the GP very well. He's head of the surgery I attend and he cited two recent studies when telling me that it may not have such detrimental affects on early pregnancy as first thought. One of the studies was carried out by one of his members of staff.
He is a champion of continuous professional development.
Sorry, I can't have you writing him off as a random GP. I value his opinion.

Then you should listen to him when he told you not to stop taking it. And listen to the fertility expert who told you to take it rather than ignoring medical advice.


Anyway, I'm bowing out of this because it's clear you've made up your mind and it's not really going anywhere.

NiceyNice

notjustsweet wrote: »

Then you should listen to him when he told you not to stop taking it. And listen to the fertility expert who told you to take it rather than ignoring medical advice.


Anyway, I'm bowing out of this because it's clear you've made up your mind and it's not really going anywhere.

I came on here looking for advice on quitting eltroxin early and all I got was womb raiders opinionating on vaping while pregnant - which I'm not, and people telling me not to quit when it's clearly not agreeing with me.

I dunno, this has been tiring. I suppose I'll just wing it. I can't be the only person who has decided that it's not for them?

qo2cj1dsne8y4k

:eek:

New Home

You asked for advice, you got it - we all maintain that you should not stop taking eltroxin without medical advice, the vaping is a separate issue. You are still not sure if the symptoms you're having are actually caused by a reaction to the eltroxin or not - perhaps there's something else going on that's causing you to have those symptoms, and it's only a coincidence that they only became manifest at the same time. While getting more tests to check it out won't do you any harm, stopping the eltroxin if you need it most certainly will - hormones are not to be trifled with. Talk to your doctors and/or get a second opinion from an endocrinologist: they may very well decide to "wean" you off the tablets, or just as well they could discover you've (and I'm just saying things at random, here) strep throat/a viral infection/an allergy to something/ the list is endless.

Kurtosis

Mod note

Folks please keep things civil. Also a reminder to everyone that asking for or giving medical advice is not permitted. NiceyNice - if you're concerned about your symptoms, no one here is going to be able to advise, you should consult with a doctor about them.

Any queries, please PM me.

NiceyNice

Well three days off eltroxin. I'm finally feeling myself again. My mood is great. That weird taste is leaving my mouth. I still feel a little anxious. Screw that. It'll go. But the best thing is that today I can breathe. Chest is a small bit tight. Breathlessness still occurs but I can BREATHE without a problem. I'm so happy. Eltroxin is the worst thing that ever happened to me and I could tolerate the adjustment phase for lexapro. Life is good.

New Home

NiceyNice wrote: »

Well three days off eltroxin. I'm finally feeling myself again. My mood is great. That weird taste is leaving my mouth. I still feel a little anxious. Screw that. It'll go. But the best thing is that today I can breathe. Chest is a small bit tight. Breathlessness still occurs but I can BREATHE without a problem. I'm so happy. Eltroxin is the worst thing that ever happened to me and I could tolerate the adjustment phase for lexapro. Life is good.

We gave you help and advice, you chose not to take it, that's your prerogative. Good luck with your health.

NiceyNice

New Home wrote: »

We gave you help and advice, you chose not to take it, that's your prerogative. Good luck with your health.

Thankfully it wasn't medical advice bc that's not allowed. But praise Jesus *from an atheist*, screw Eltroxin. It's not for me.

Amazingfun

Nicey, I had posted here regularly a few years back. Eltroxin wasn't for me either.
I did a lot of research, found others who self treated, ordered my own NDT and have been successfully doing that ever since.

Good luck on your journey

Gremlinertia

New Home wrote: »

We gave you help and advice, you chose not to take it, that's your prerogative. Good luck with your health.

NiceyNice wrote: »

Thankfully it wasn't medical advice bc that's not allowed. But praise Jesus *from an atheist*, screw Eltroxin. It's not for me.

Ok, that's enough now, agree to disagree but no more derailing thread as of now. Any further sniping will result in cards/infractions

KittyWillow

I noted when reading posts here that people were having difficulty getting full thyroid panel bloods done. I had same problem, GP would request thyroid bloods, ie TSH, FT4, FT3 but lab at hospital would refuse to do them as my TSH was in 'range', but I felt awful. Whilst looking online for information I came across a site called: healthunlocked.com where I found a wealth of information and advice on thyroid problems. It is possible to get bloods done privately with just a finger prick sample, cost for full thyroid panel is approx 80 sterling. This includes, TSH, FREE T4, FREE T3, TOTAL T4, THYROGLOBULIN ANTIBODIES, THYROID PEROXIDASE ANTIBODIES, VITAMIN B12, FOLATE, VITAMIN D, FERRITIN AND CRP. Medichecks is the company i use. The main difficulty is getting the blood to them from Ireland to UK as ' an post' don't handle blood products. I'm lucky at present as I can post in northern Ireland, it's about an hours drive from me. Hope this will be useful for someone.

r93kaey5p2izun

Madelynn Prehistoric Musketeer wrote: »

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.

Well, nearly a year later I finally got bloods done. And everything thyroid is apparently "perfect". My TSH is 4.1 so within range. I'm so tired and cold and I'm battling my weight like never before.

My GP is blaming my PCOS and says it's metabolic syndrome and I have to take Metformin. My glucose is normal and I'm very reluctant to take Metformin due to horrible side effects. Fair enough if the thyroid values are in range and he's sceptical of my symptoms but I don't know why he's so willing to dole out Metformin in that case. Anyway, same as my last bloods around 3 years ago I still have low B12 (not low enough for injections), and VitD so low it barely registers despite taking a supplement daily.

Aquals

Madelynn Prehistoric Musketeer wrote: »

Well, nearly a year later I finally got bloods done. And everything thyroid is apparently "perfect". My TSH is 4.1 so within range. I'm so tired and cold and I'm battling my weight like never before.

My GP is blaming my PCOS and says it's metabolic syndrome and I have to take Metformin. My glucose is normal and I'm very reluctant to take Metformin due to horrible side effects. Fair enough if the thyroid values are in range and he's sceptical of my symptoms but I don't know why he's so willing to dole out Metformin in that case. Anyway, same as my last bloods around 3 years ago I still have low B12 (not low enough for injections), and VitD so low it barely registers despite taking a supplement daily.

This is worth a read Madelynn Prehistoric Musketeer:

https://academic.oup.com/jcem/article/98/9/3584/2833082/The-Normal-TSH-Reference-Range-What-Has-Changed-in

A TSH of 4.1 would be outside the normal range by certain standards. There doesn't seem to be a worldwide common consensus.

Polly3

I have had hashimoto for years now. It's very hard as you say fussy head. I take coffee to keep me alert but that makes tiredness worse too. They have switched me to 150mg now from 125mg so I hope it's not getting worse. What eltroxin are u taking?

jellybear

First time posting here but have been suffering badly with my condition lately. I was diagnosed with an underactive thyroid about 2 years ago and am currently on 75mcg 6 days a week and 50mcg 1 day a week. Symptoms have been very bad lately and it's so difficult to know what is a symptom of UT and what isn't. Currently wide awake even though I'm up in a few hours and have been like this the last while with my sleep pattern all over the place.
Going to see my endocrinologist in a couple of weeks so we'll see how that goes. Had bloods done last week which showed a rise from 0.75 to 4.27 in my TSH levels so not sure what he'll do to be honest. Anywho off I go to try get some much needed sleep!

Merkin

jellybear wrote: »

First time posting here but have been suffering badly with my condition lately. I was diagnosed with an underactive thyroid about 2 years ago and am currently on 75mcg 6 days a week and 50mcg 1 day a week. Symptoms have been very bad lately and it's so difficult to know what is a symptom of UT and what isn't. Currently wide awake even though I'm up in a few hours and have been like this the last while with my sleep pattern all over the place.
Going to see my endocrinologist in a couple of weeks so we'll see how that goes. Had bloods done last week which showed a rise from 0.75 to 4.27 in my TSH levels so not sure what he'll do to be honest. Anywho off I go to try get some much needed sleep!

Are you a woman OP? I have a really good Endo and he said that he's always anxious to keep TSH under 2 in women of child bearing age as it seems to be the optimum range. I'd say he will definitely up your Eltroxin, just make sure to tell
him how you're feeling. I had a big jump in my TSH recently too and my Eltroxin was increased to 100mg daily and it has definitely helped. It's good that you have an imminent appointment.

jellybear

Merkin wrote: »

Are you a woman OP? I have a really good Endo and he said that he's always anxious to keep TSH under 2 in women of child bearing age as it seems to be the optimum range. I'd say he will definitely up your Eltroxin, just make sure to tell
him how you're feeling. I had a big jump in my TSH recently too and my Eltroxin was increased to 100mg daily and it has definitely helped. It's good that you have an imminent appointment.

Hiya, yeah I'm female and recently married so hopefully kids are in the cards in the future! I was actually on to my endo over the Summer regarding pregnancy etc and he advised a TSH of 2.5 or lower so we'll see what happens but I'd imagine he'll increase my dosage.

Gonad

First time poster and looking for some advise .

I have been having the same symptoms for 10 years . Extreme fatigue , paleness , sensitivity to cold , headaches etc etc .

Have had a few blood tests over the years but no matter what they always come back in normal range . My vit d was a bit low on last one and took some tabs but no difference . Have had brain scan also to rule out that side of things .

Decided to quit smoking and cut right back on alcohol the past 5 months but has made no difference what so ever . It's like I am just flat lined and feeling the same way all day everyday .

My symptoms seem to be pointing towards thyroid issue but test is alway in normal range .

Feels like I just floated through the last 10 years on autopilot and don't want the next 10 to be he same . It is strange because everyday someone tells me Iook very tired and I feel soooo tired yet nobody seems to be able to locate the problem .

Have had 2 doctors in that time and both seem to be stumped .

What should be by next move ? Need help badly not sure how long I can keep pushing through this fatigue .

Have had full bloods done but never got reverse t3 would that be option also maybe full saliva test ?

Thanks

tanit

Aquals wrote: »

This is worth a read Arlessienne:

https://academic.oup.com/jcem/article/98/9/3584/2833082/The-Normal-TSH-Reference-Range-What-Has-Changed-in

A TSH of 4.1 would be outside the normal range by certain standards. There doesn't seem to be a worldwide common consensus.

Great article it's very interesting the debate about what is supposed to be the best upper level. Thanks for sharing

Bluesquare

Hi,

I was diagnosed last year with sub acute thyroiditis which means I went hyper then flatlined then hypo . The hypo stage can last up to a year with a ten percent chance of it remaining . I have been on 100mg if elthryoxin since April and felt normal and my bloods were normal . I went back to the consultant who thought I should try come off it as I had a 90% chance of being grand .

I didn’t want to as I felt ok and don’t have time for low energy levels . Anyway I agreed to taper and dropped to 75mg on Monday . Now I feel wrecked and have been getting headaches .

Would symptoms return so quickly ? I don’t want to keep taking this dose if these are symptoms that will get worse and then it will take another 3 weeks to feel right agsin .

Anybody have similar experience ?

andrea00

Hello everyone,

I'm 30, female and (used to be) very fit and healthy, until Christmas 2017. The beginning of Jan I was diagnosed with hypothyroidism after offhandedly mentioning to my GP both my sisters had it and he sent off my bloods for testing.

My TSH has come back as 253 (range 12-23 or so- I don't know what units the lab used) and my free T4 was sub-optimal even with my pituitary working so overtime to stimulate the thyroid.

My GP is referring me to St. Vincents Endo Dept, and I've gotten a letter through to say I'm on the Outpatients Waiting List which is between 6 and 12 months. How realistic is that timeline?? Will I get a letter soon to say when the appointment is (even if it's 6 months away!) or will I have to just wait for months before hearing anything?? Would I be considered a more urgent case considering my TSH is through the roof?

He also wants me to have an ultrasound on my thyroid, I can feel it's swollen and my neck feels swollen too, I also feel like I've a lump in my throat so there's definitely something going on there. Is this a separate appointment or does this happen at the OP Endo appt?

I feel like I've got the flu constantly, I've no energy and ache all over sometimes (but not all the time thankfully), I'm really struggling to think straight and to be cheerful at all, I'm struggling to cope with every day normal situations, I'm finding them overwhelming for no reason at all.

My GP has put me on 50mcg Eltroxin, in his own words he didn't know where to start in terms of dosage. I've been on the meds 2 weeks now and just feel so so awful. Is it a case of grinning and bearing it until the 6 weeks are up and I can have mt bloods repeated and dosage increased?

Any advice would be super helpful because I'm feeling very worried and exhausted and lonely! Also I feel like a massive moaner but jaysus, I can't go on like this!

qo2cj1dsne8y4k

Hey Andrea. My tsh levels came in at 347. I was referred to both mullingar and st James's, mullingar had me on an urgent list and the appointment was 2 months away, st James had me in within a few days.
You poor thing I know you’re feeling rubbish but there is no quick fix I’m afraid they’ll slowly just up your meds and keep an eye on you every 4 weeks.
I’m no dr but 50 is probably not going to be enough but they have to start you slowly. Stick with it, get your bloods repeated in a few weeks and see if they need to up it again, they probably will.

You will receive a separate appointment for your goiter ultrasound. As far as I know they just use this to confirm you have thyroid disease. If you have any questions you can pm me, I know how horrible where you are is

andrea00

Thanks a million for your response!

I actually called my GP today because I feel like I'm at the end of my tether, and he's been brilliant. He said he's going to chase up the ultrasound appointment and has increased to 75mcg so at least it's going in the right direction and I might start to feel a bit more human. Although he did say because my TSH is so high that we're probably a long way off my optimal dose which of course I understand.

Does seem to be a long process, it's hard to be patient when you feel so absolutely rubbish but that's just what it takes!

I suppose it just varies with each hospital and their patient workload. I think the main thing is getting my ultrasound really for my own peace of mind.

Thank you for your kind words and reassurance, it's nice to know I'm not on my own, though horrible that so many people are suffering with this!

Gonad

andrea00 wrote: »

Hello everyone,

I'm 30, female and (used to be) very fit and healthy, until Christmas 2017. The beginning of Jan I was diagnosed with hypothyroidism after offhandedly mentioning to my GP both my sisters had it and he sent off my bloods for testing.

My TSH has come back as 253 (range 12-23 or so- I don't know what units the lab used) and my free T4 was sub-optimal even with my pituitary working so overtime to stimulate the thyroid.

My GP is referring me to St. Vincents Endo Dept, and I've gotten a letter through to say I'm on the Outpatients Waiting List which is between 6 and 12 months. How realistic is that timeline?? Will I get a letter soon to say when the appointment is (even if it's 6 months away!) or will I have to just wait for months before hearing anything?? Would I be considered a more urgent case considering my TSH is through the roof?

He also wants me to have an ultrasound on my thyroid, I can feel it's swollen and my neck feels swollen too, I also feel like I've a lump in my throat so there's definitely something going on there. Is this a separate appointment or does this happen at the OP Endo appt?

I feel like I've got the flu constantly, I've no energy and ache all over sometimes (but not all the time thankfully), I'm really struggling to think straight and to be cheerful at all, I'm struggling to cope with every day normal situations, I'm finding them overwhelming for no reason at all.

My GP has put me on 50mcg Eltroxin, in his own words he didn't know where to start in terms of dosage. I've been on the meds 2 weeks now and just feel so so awful. Is it a case of grinning and bearing it until the 6 weeks are up and I can have mt bloods repeated and dosage increased?

Any advice would be super helpful because I'm feeling very worried and exhausted and lonely! Also I feel like a massive moaner but jaysus, I can't go on like this!

Stop the Thyroid Madness on Facebook


check it out

Corruptedmorals

Andrea, normally you would have a few weeks notice of an appointment so it wouldn't be made far in advance. Glad to hear your GP is chasing up the ultrasound, even if it's in the same hospital as the endo referral make sure you get a copy of the ultrasound report sent into the endo department so they can review it as part of your referral. Any further information can alter what waiting list you are on although you should not be routine (longest waiting list) with a TSH like that.

Hopefully you get an ultrasound appointment soon.

Delaney101

Hi Folks

I'm a male recently diagnosed July 2017 with Hashimotos thyroiditis (auto immune system attacking thyroid)

Back in august 2016 I began feeling miserable. no energy, sweats, constant pains in my legs. Thinking back I hadn't felt great for a very long time. This illness had the worst timing as I had just bought a house and my wife was pregnant. I had a lot of physical manual labour to to but I was so weak. I was out of breath walking up the stairs

Anyway long story short, It took nearly a year to get to the bottom of what was happening. The worrying took its toll also. I did every test under the sun. 3 MRIs, bloods, nerve conduction study. Eventually after I had spent a lot of money, they did a quick Thyriod blood panel. My TSH levels were 4.95 and TPoab were through the roof at 1,194.3

In July I started to take 50mcg of eltroxin..6 months later I feel a lot better. losing weight, have energy back, pains in legs are gone

I do have difficulty with moods. which I am working on. Although I am better and I am still worried about the future. I'm worried that the eltroxin covers up the problem. I still have this immune condition. What if it comes back? How they I get to root of the problem?

Can anybody advise me as to what I can probably expect in the future. Will taking 50mcg everyday keep me feeling generally good and or will this immune condition get worse or vary and I'll have to vary my dose to compensate

also, most of the posts are from women. Are there any men on the thread, who have this condition and can advice?

your advise is much appreciated

Mzo1978

Delaney101 wrote: »

Hi Folks

I'm a male recently diagnosed July 2017 with Hashimotos thyroiditis (auto immune system attacking thyroid)

Back in august 2016 I began feeling miserable. no energy, sweats, constant pains in my legs. Thinking back I hadn't felt great for a very long time. This illness was had the worst timing as I had just bought a house and my wife was pregnant. I had a lot of physical manual labour to to but I was so weak. I was out of breath walking up the stairs

Anyway long story short, It took nearly a year to get to the bottom of what was happening. The worrying took its toll also. I did every test under the sun. 3 MRIs, bloods, nerve conduction study. Eventually after I had spent a lot of money, they did a quick Thyriod blood panel. My TSH levels were 4.95 and TPoab were through the roof at 1,194.3

In July I started to take 50mcg of eltroxin..6 months later I feel a lot better. losing weight, have energy back, pains in legs are gone

I do have difficulty with moods. which I am working on. Although I am better and I am still worried about the future. I'm worried that the eltroxin covers up the problem. I still have this immune condition. What if it comes back? How they I get to root of the problem?

Can anybody advise me as to what I can probably expect in the future. Will taking 50mcg everyday keep me feeling generally good and or will this immune condition get worse or vary and I'll have to vary my dose to compensate

also, most of the posts are from women. Are there any men who on boards who have this condition that can give advice

your advise is much appreciated

Contact Dr Neville Wilson in the Leinster Clinic. His number is 01-5052135.
www.drnevillewilson.com ... some good informative content there.

Eltroxin will mask the real issue. It took me years to be given a diagnosis for hypothyroidism I had to change gp but first i educated myself so I knew what to question find out the ranges for feritin/ b12 / folate etc and u will see that if u are within the ranges even though u are at the lower end ur normal gp or endo will say u are fine but to function best u need to be at the higher end of rhe ranges. I switched 4 weeks ago to half a grain of NDT (natural desicated thyriod) it's t3 + t4 as my issue was after thyroid cancer and just being left with half thyroid I wasn't producing enough hormone nor was I converting. 4 weeks on I feel better i have more get up and go I'm slowly getting more focused I'm getting more bloods done now this week to check for hassimotos I've been advised to give up the bread/gluten which I did 4 weeks ago and I've lost half a stone since.

jelly&icecream

Delaney101, 50mcg of eltroxin is a very low dose which I suspect needs to be increased. Have you got bloods done recently? Those TPOAb numbers are horrifying, no wonder you were feeling so bad! The TSH range that most people feel optimal at is in reality a lot narrower than the lab ranges. I find I feel better if mine is down near to 1, certainly under 2.

Hypothroidism can definitely affect your mood. The reason I went and got my bloods checked in the first place was I turned into a ball of irritable rage which led to me starting treatment and starting to educate myself on thyroid issues. The doctor just wanted to prescribe me antidepressants to get me out of there but I insisted on the bloods which showed there was an underlying issue.

A lot of people recommend Dr Wilson, I think its actually quite hard to get an appointment with him at this stage! If you do go to see him its good to have recently done bloodwork with you. He seems to recommend NDT over eltroxin in most cases as many people tend to feel better on it.

You should join the Thyroid Ireland facebook page and look for a good recommendation for a doctor or endocrinologist in your area. There seems to be a very wide range of knowledge bases in the endo community so you need to find one who keeps up to date with modern research and will prescribe alternative treatments to T4 only eltroxin if needed.

And go into any appointment armed with as much information as possible and a list of questions you want answered. Don't accept being fobbed off.

Delaney101

Thanks for the advice. Much appreciated