thyroid misery

NiceyNice · 06-09-2017 10:27pm

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 · 06-09-2017 10:31pm

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 · 06-09-2017 10:58pm

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 · 06-09-2017 11:03pm

:eek:

New Home · 06-09-2017 11:05pm

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 · 07-09-2017 11:18am

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 · 09-09-2017 9:43pm

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 · 09-09-2017 10:05pm

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 · 09-09-2017 10:21pm

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 · 09-09-2017 11:00pm

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 · 10-09-2017 12:29am

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 · 09-10-2017 4:02am

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 · 14-10-2017 11:48pm

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 · 14-10-2017 11:56pm

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 · 17-10-2017 9:47am

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 · 18-10-2017 1:21am

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 · 18-10-2017 8:08am

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 · 18-10-2017 5:52pm

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 · 24-10-2017 9:58am

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 · 24-10-2017 9:22pm

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 · 23-11-2017 7:25pm

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 · 06-02-2018 1:21pm

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 · 06-02-2018 1:40pm

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 · 06-02-2018 3:30pm

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 · 06-02-2018 4:13pm

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 · 07-02-2018 10:42pm

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 · 22-02-2018 4:20pm

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 · 22-02-2018 5:01pm

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 · 22-02-2018 5:22pm

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 · 23-02-2018 3:57pm

Thanks for the advice. Much appreciated

Delaney101 · 08-03-2018 3:39pm

Hi Folks

Has anybody any advice on herbs/suppliments/vitamins to improve mood for Hashimotos. I take 50mcg of eltroxin and I feel good but my moods are up and down

I have heard of two things that can help people who suffer with Hashimotos

(1) I have heard that a daily dose of selenium is good and that eating two brazil nuts / day can give a person the daily amount of selenium needed. I tried this recently and I did feel good but will need to take for longer

(2) I have recently heard of something called "Ashwagandha" or "Indian Ginseng"..has anybody tried this?

I appreciate any advice that can help. thanks!!

waxmoth · 08-03-2018 10:25pm

Ashwaghanda has been shown to have a normalizing effect on thyroid hormone levels so it may be advisable to consult a medical herbalist in conjunction with your prescribing doctor. https://www.liebertpub.com/doi/abs/10.1089/acm.2017.0183

Mzo1978 · 20-03-2018 1:24pm

Delaney101 wrote: »

Hi Folks

Has anybody any advice on herbs/suppliments/vitamins to improve mood for Hashimotos. I take 50mcg of eltroxin and I feel good but my moods are up and down

I have heard of two things that can help people who suffer with Hashimotos

(1) I have heard that a daily dose of selenium is good and that eating two brazil nuts / day can give a person the daily amount of selenium needed. I tried this recently and I did feel good but will need to take for longer

(2) I have recently heard of something called "Ashwagandha" or "Indian Ginseng"..has anybody tried this?

I appreciate any advice that can help. thanks!!

I take my ndt in the morning an hour before food, I take a super 8 probiotic mid morning I take an iron tablet (b complex) selenium, vit d spray, I also take thyroid energygot it on I herb, cleared by Dr Wilson to take it, it contains Ashwagandha and also Maca and a few other things

gercoral · 06-04-2018 9:48pm

hi, i haven't been able to go through each page of comments and replies, but was wondering,

what were the symptoms of underactive thyroid for you all? are there symptoms that people may not be aware of?

Wyldwood · 07-04-2018 10:15am

That's a 'how long is a piece of string' question. Everyone is different. If you read through these pages you will see the full gamut of symptoms people have suffered, alternatively, google Mary Shomon she is a thyroid advocate and has a wealth of information on her web pages.

Brian201888 · 01-05-2018 4:38pm

Any particular GP's have a good reputation for managing hashimoto thyroiditis in the Dublin area?

elaney · 15-05-2018 10:48am

Hi,
I just wanted to ask a question. I got blood work done recently at my doctors as I was feeling so tired constanly. My nurse rang me last Friday to say my tsh levels were 4.9. That I don't need to worry as it was borderline and they will test me again in three months. I asked her was the tiredness I was experiencing down to my thyroid but she said no I need to get more sleep. I had to laugh as I could sleep ten hours a night and still feel tired. I also have problems with my periods which are heavy and every three weeks. I've lost all interest in any activity the last year. I just felt she was fobbing me off. I just want to know is tsh 4.9 high . That's all the info she gave me. Sorry if this has been asked before.

jelly&icecream · 15-05-2018 10:56am

elaney wrote: »

Hi,
I just wanted to ask a question. I got blood work done recently at my doctors as I was feeling so tired constanly. My nurse rang me last Friday to say my tsh levels were 4.9. That I don't need to worry as it was borderline and they will test me again in three months. I asked her was the tiredness I was experiencing down to my thyroid but she said no I need to get more sleep. I had to laugh as I could sleep ten hours a night and still feel tired. I also have problems with my periods which are heavy and every three weeks. I've lost all interest in any activity the last year. I just felt she was fobbing me off. I just want to know is tsh 4.9 high . That's all the info she gave me. Sorry if this has been asked before.

The symptoms you're describing are the definition of hypothyroid tbh. TSH of 4.9 is not normal and most people are symptomatic to some degree at that point. You'll have to push not to be fobbed off or get your results printed out and move to a better doctor. Join the thyroid Ireland facebook page and ask about a good GP in your area that is likely to be sympathetic to your needs. Or ask to be referred to a good endo (quality can vary a lot with them as well for thyroid issues). You should get ferriten, Vit B12 and other things checked in your bloods also. Did they check FT4, TPO antibodies etc as well?

Educate yourself on the condition and go back to your GP or a different more sympathetic one armed with that information. The very minimum they should do is start you on eltroxin.

Your TSH should be close to 1 and you should push for treatment that reduces it under 2.5 at the highest.

elaney · 15-05-2018 11:07am

Thanks for getting back to me so quickly jelly &icecream.
I was given no more information just told tsh 4.9 not to worry we will do another test in 3 months. The thing that annoys me I've had these symptoms for the last eight months and they want me to wait another three. I wasn't expecting to be told about my thyroid so didn't know what to ask. Looking online I found alot of frustrated people with same tsh and not being treated. That's why I asked here if it's high. I will try to educate myself so I'll have more understanding for the next test. But not looking forward to next three months.

Mzo1978 · 15-05-2018 12:06pm

elaney wrote: »

Thanks for getting back to me so quickly jelly &icecream.
I was given no more information just told tsh 4.9 not to worry we will do another test in 3 months. The thing that annoys me I've had these symptoms for the last eight months and they want me to wait another three. I wasn't expecting to be told about my thyroid so didn't know what to ask. Looking online I found alot of frustrated people with same tsh and not being treated. That's why I asked here if it's high. I will try to educate myself so I'll have more understanding for the next test. But not looking forward to next three months.

I was at 4.9 my gp fobbed me off for 10 years told me I was depressed gave me anti depressants gladly I threw them in the bin I was tired because I was a mother, my hair was falling out due to stress my skin was dry and flaky because of dairy... I educated myself on ranges etc I booked an appointment with Dr Wilson in the Leinster Clinic while waiting for that I changed gp he put me on eltroxin 3 months later I was still the same if not worse, Dr Wilson started me on NDT my tsh is now at 0.5, after being told I wasnt releasing an egg I would need help getting pregnant we fell pregnant naturally and I feel great the Endo in the hospital is a complete moron I see Dr Wilson solely bloods every 4 weeks he checks them and alters ndt accordingly. I haven't looked back x

Delaney101 · 15-05-2018 12:06pm

Hi elaney

back in 2017 my TSH was 4.95,,elevated and I was experiencing some horrible symptons (leg pains; fatigue; brain fog)...my TPOab were 1,194.3

I was diagnosed with hashimotos thyroiditis and put on 50mcg of eltroxin..my TSH fell back down to 2.87 then in jan 2018 2.49..feeling much better

certainly, TSH of 4.9 is elevated and you should follow advice above, which is good

elaney · 15-05-2018 12:51pm

Thanks everyone. I just got the impression that it wasn't that bad and I certainly thought my symptoms were all in my head good to hear all your experiences. I can definitely relate to the dry skin it's like a snow storm at times. I also have the leg pain on and off. I won't be fobbed off the next time especially as if I don't have to live like this. I need to arm myself with all the information and be ready for my next test. You have all put my mind at rest.x

qo2cj1dsne8y4k · 15-05-2018 7:34pm

I would literally kill to have a tsh of 4, mine currently is 180. But I find drs can be a bit dismissive of thyroid problems. Two years ago I was sent to a+e with tsh of 347, the ED dr didn’t even wait for my bloods to come back from lab. He doubled my meds told me that I was alert, young, walking and talking that I was to go back to my gp in 6 weeks I was fine. The next morning I recieved a call from the nurse manager in a+e requesting I come back immediately, lab results were back and she couldn’t believe I was sent home.

Fact I’m making though, if you’re not well with a tsh of 4, then go back until they take you seriously. Unless you go through it you can’t understand how awful it is to feel like you do with a lazy thyroid.

RentDayBlues · 17-05-2018 9:55pm

Just on to vent, haven’t got bloods done in about 18 months, levels had been great for about 4-5 years and after the last test my tsh was sub 1 which I felt best on. Got bloods this week and my tsh has gone to 8.4

So I’m about to begin that fun cycle of small med increases followed by blood tests every few weeks. I had it managed so well, feel frustrated now

End vent

ace_irl · 18-05-2018 10:19am

I'm just wondering if anyone can give me a bit of advice on getting blood tests done. I have to get them done for my thyroid but I have a horrible fear of need;es and blood tests. To the extent I'll get sick, shake too much for the doctor to safely do them or have a panic attack.

Does anyone have advice on how to manage this? Even the idea of it now makes me feel sick.

hadenoughofit · 30-05-2018 4:14pm

Hi. I'm a long term thyroid and auto-immune sufferer, my situation these days is pretty stable.

The problem in my experience is less the practicalities of having blood taken (there's not much to be said about it, it's a bite the bullet sort of deal - you either do or you don't), and more the medical context.

Most doctors run the stock TSH and T4 blood tests, and out of what is probably a fear of legal and professional exposure when prescribing replacement hormone tend to stick rigidly to the one size fits all guidelines on what average blood/target values are supposed to be.

There's a proportion of patients for whom this works fairly well, but lots (perhaps 30%+?) for whom for various reasons (thyroid unless it's classic primary hypothyroidism caused by dietary deficiencies and the like is often mixed up in lots of other issues like lifestyle, stress, gut trouble, nutrient absorbtion problems, food sensitivities, auto immune disturbances, auto immune attack on the thyroid, inherited tendencies and so on) it doesn't deliver a resolution of symptoms.

My personal experience in the 90s and early 2000s until a thyroidectomy in 2005 was that it made not a bit of difference what my symptoms were (i lost my career to long term chronic fatigue), or how I felt - this dogma was applied.

The possibility of auto-immune and/or secondary hypothyroidism (I was making the hormone, but not using it properly - so the stock blood values while not perfect were not far off) were denied until very shortly before the point when the post-op pathology report diagnosed a thyroid cancer, a hugely enlarged thryoid and advanced auto immune thyroid disease.

A big part of the problem is that mainstream medicine simply doesn't have effective diagnostic tools or treatment protocols to handle much more than basic primary hypothyroidism and hormone replacement, and even that takes little account of the reality that quite a few people often do much better at different blood values.

The result is that it's extremely difficult to get serious engagement in trouble shooting more complex situations, or those where the stock protocol isn't delivering. Most GP and endos seem to follow the dogma, and rationalise the issues away in the case of those patients for whom it doesn't work very well. (leave then feeling well)

The key issue for this reason is perhaps to if possible gain some sort of an overview of the realities of this environment (the conflict between the happy happy theory and the reality) by reading the topic carefully. I'm a little out of date, and it's important to realise that not everything you read is necessarily true either - but websites like Thyroid UK, Mary Shomon's pages, or Stop the Thyroid Madness are decent places to start.

Over time a fairly clear picture of the reality for many patients hoves into view through the murk...

The ideal is then to find a 'thyroid friendly' doctor, one who isn't overly blinded by the dogma/fearful of trying some options/the need to appear all knowing, and who will collaborate in an effort to find a solution. It helps enormously if you are well read up in advance, it's not territory to enter in wide eyed and blindly trusting mode.

There are a few about that are in this mould, that will within limits work with you.

You never know, you could well be one of the lucky ones for whom the stock protocol works well, and it's anyway where you have to start.

Don't be afraid though if it gets to that point to change docs if the treatment isn't working as it should/if your eventual guy turns out to be a one size fits all operator - personal experience suggests that it's a waste trying to change those that are not more open minded...

Seanachai · 02-06-2018 4:13pm

ace_irl wrote: »

I'm just wondering if anyone can give me a bit of advice on getting blood tests done. I have to get them done for my thyroid but I have a horrible fear of need;es and blood tests. To the extent I'll get sick, shake too much for the doctor to safely do them or have a panic attack.

Does anyone have advice on how to manage this? Even the idea of it now makes me feel sick.

As far as I know the tests on the site below are a finger-prick sample

https://www.letsgetchecked.com/ie/en/thyroid-test-plus/

Spook80 · 07-06-2018 8:39am

Just got diagnosed with hyperthyroidism. My t4 was 64.9 and t3 24.5, tsh 0.01.
Just been given tablets for it and also beta blockers as heart rate was very high.

Im getting referred to St.Vincents but does anyone know what to expect or what’s next in terms of an outcome? Is it just another blood test to tell me again how it is and more tablets?

hadenoughofit · 07-06-2018 11:01am

This is quite long Spook, it's complex territory with potentially lots of grey areas. I'm not remotely medical, so it's just hearsay from personal experience and what gets written on thyroid forums. My issues were to do with auto immune issues and consequent secondary (producing the hormone, but not using it properly) hypothyroidism.

It'd probably make sense to get stuck in and start reading the books and on thyroid support sites - bearing in mind that not everything that people write is accurate. A picture emerges from the experience people report over time though...

The progression with hyperthyroidism seems often to be broadly along the lines of treat it with drugs to a certain point (not sure if this is indefinitely feasible), then if required intervention to reduce the output of the thyroid.

Interventions may be surgical (remove a part of it), or use of radioactive iodine. (kill off a proportion of it) There may even be other options by now.

I'm personally wary of radioactive iodine, and refused it after my own thyroidectomy 13 years ago for a thyroid cancer. (it's used/was used to kill off residual cancer cells, but reading seemed to suggest that it brought some risks of it's own)

There's likely other possible causes of hyperthyroidism, but one that comes up fairly frequently is auto immune attack on the thyroid. One form of this is known as Hashimoto's disease.

Mainstream medicine doesn't much go there, but alternative practitioners tend to suggest that it this these days seems often to have its origins in the sort of metabolic conditions that may eventually go on to cause chronic fatigue.

Combinations of genetic tendency, stress, lifestyle, mind state (routinely running high levels of stress hormone, mostly cortisol) and diet (many reportedly develop sensitivities to foods like wheat flour, pesticide residues confectionery and other stuff) reportedly and in my own experience lead to chronic irritation of the gut, and eventually (some dispute this) to the damaged gut wall leaking foodstuffs in the blood. Which causes a chronic over response of the immune system, which may then attack parts of the body. For some reason the thyroid seems often to get it...

Auto immune attack seems to depending on the occasion cause both over and under active thyroid, no idea why.

The issue that seems often to arise is that whatever the intervention is it by definition has to kill off more thyroid than is optimum, so people seem to end up either low on hormone and struggling with fatigue until it adjusts, or going on thyroid replacement. (taking hormone to bridge the gap)

Some seem to do fine on simple T4 only replacement in this situation, others struggle badly to find a regime that works well - experiencing fatigue and other hypothyroid symptoms.

The presence and behaviour of the remaining part of the thyroid (or of more widely based auto immune disturbance?) may be a disturbing factor - it reputedly by acting as a centre of auto immune disturbance or by being somewhat unpredictable in its output can make it tough to get to a replacement regime that leaves them feeling well. Some seem to report a huge breakthrough in this regard when the remainder of their thyroid is finally removed.

The trouble in this space is sometimes that endocrinologists tend to replace thyroid to whatever level the stock blood tests suggest is required, but to then discount reports from some patients that they are still feeling unwell. A few will work to try to get to the bottom of this.

The other big question to consider is what is causing the hyperthyroidism. If it's auto immune disturbances there are reports out there (there's at least one book 'How I Cured my Hashimotos Disease' or similar) of some managing to reverse the condition through careful dietary and lifestyle changes, especially if it's not too advanced.

It's probably worth getting up to speed on this topic, as IF there is an underlying cause of auto immune disturbance it may bring risks of other potentially serious problems down the road. So it might well be worth getting on top the situation. Doing so did wonders for my health and well-being...

Medical testing in my experience was not always a reliable indicator of auto immune issues - I was tested in lots of ways over the years for thyroid and broader issues and told I was fine. Yet the post thyroidectomy pathology report diagnosed advanced auto immune thyroid disease.

Thyroid is one of those fields where it seems to pay for many patients to get up to speed on management of their own condition...

Spook80 · 07-06-2018 11:57am

Thanks so much for the great post it’s very helpful.
I’m only at the beginning of this so a lot of research to do and probably will know a lot more after the hospital visit in a few weeks/months.

thyroid misery

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