thyroid misery

cyning

My endo is after taking me off all my vitamins: I went from normal levels to a TSH of 29.02 in 6 weeks and literally all that had changed was I started taking vitamins... aagh! I had a little girl 13 weeks ago now, and pregnancy was really, really difficult for me but she got here safe and sound which is the main thing Just for anyone reading this thinking of getting pregnant etc make sure you speak to your endo first. I need to try and stabilise my levels now again before thinking of no 2! Also thankfully even with a TSH that high (and a T3 of 3.02 and T4 of 7) I've been able to keep exclusively breastfeeding: no mean feat with a baby on a 2 hourly feeding schedule and the overwhelming tiredness that goes with it!

My hair loss definately improved on Eltroxin, it just took a little bit of time unfortunately.

Also Ti-tre is available again thank god I was so upset when it was recalled it was the first time I had improved in years.

Also, and I know I've said it on this thread before but PLEASE take that stopthethyroidmadness site with a serious pinch of salt. Firstly it's selling something: like their book. Secondly even the language used in it: "inability to hold children" being caused by hypothroidism? No, an increased risk of miscarraige can be caused by hypothyroidism. Also reading those big long lists of symptoms can do far more harm then good. I know everyone will have different opinions, but not everything is to blame on the thyroid.

Sunny76

Cltt97....thanks so much for your reply. My hair has been an issue for quite sometime and I had accepted that it was just one of those things but then I started getting more thyroid type problems and symptoms. My doctor run a load of tests....all hormone (estrogen, progeterone, testosterone etc) tests came back well within normal range and that is where I thought my problem was originally....having suffered two miscarriages in the last year. But it appears not. I am still waiting for some results....Vit D and Anti-bodies ones and a few others. Ferritin levels came back very low and as doctor said this would cause hair problems. Sugar levels also high which again, doctor said I need to address. To be honest I have neglected my health a bit the last few years....not watching what I am eating, not exercising and stressed constantly with work and life! I put myself way down my list of priorities. I knew something wasnt right but only decided to do something about it when hair got bad and also due to miscarriages. I was not aware until doctor mentioned it that thyroid problems could cause a miscarriage so feeling a bit guilty about that :-( I am willing to change my diet to give myself the best chance but I know things will take time to balance out. I am relieved to hear that you did not have any problems taking the medication. I will be starting it tomorrow. I was on Eltroxin before (only for a few months) and I dont recall having any problems but wasn't sure if I just didnt notice!

When you say I need to watch the iron when starting thyroid medication....what does this mean? Do they not go well together? Taking iron is a nightmare for me as I suffer from constipation at the best of times so I am having to take it with horrid prune juice! But its helping a little so will stick at it. I take folic acid daily and a B Complex, I am waiting to see about the vit d. I also take biotin for my hair. I have purchased a nice big bag of brazil nuts for selenium and have read evening primrose, zinc and l-lysine can also help - any recommendations for these? I'll keep the local health food store going anyway! The iron I am taking is Ferrograd C so that have vit c also.

One other thing...I asked the doctor about testing T3 levels but he said theres no need....do you think should I push for it to get the whole picture?

Sorry for the length of this post! I have a thousand questions and though my doctor is great - understanding and supportive and is taking me seriously - I do feel I need to be working on it myself also. Its my health. I want to do the best I can.

Thanks again for your reply. Its put my mind at ease :-)

Sunny76

Thanks for that also cyning. I was so long typing my "book" that your mesage came in. Another ok for Eltroxin....feeling much better about it. So glad I found this website now. What is ti-tre?? Congrats on your little girl by the way :-)

cyning

I had a miscarraige previously too... don't feel guilty. There is nothing you can do about it. Nothing. Just focus on getting healthy for you and future babs

I'd push for T3 tests. Some people (like me ) don't convert T4 to T3. There's no test for it but iyou can have low T3 results and normal T4 results. I've changed GP (for purely geographical reasons!) and I had that too. Just said please test them, and they did!

Eltroxin is T4, and Ti-Tre is T3. It had been pulled from the market but is back again thankfully! Personally I think most people are fine on Eltroxin (realistically you'll always find worst case scenarios on the internet: people aren't inclined to post to say I take 1 tablet a day and I have no more problems) there are 7 of us in my family (granny, aunts, cousins) with thyroid problems. I'm the only one with any issues: all the rest take their tablets and forget about it!

Sunny76

Thanks cyning - I have said that to the doctor about the T3 test but think when I am talking to him tomorrow I will push for it again. Thats true about the internet - no one really posts about positive stuff. Never really thought of it that way! Seems to be a lot of "bits" out of whack with me at the moment so as you said, time to get them sorted to give me the best chance of having a baby. I am 36 so feel like time is not on my side though. I wake up in a cold sweat sometimes that I have left it too late and now I have all these "bits" gone wrong and I have to fix them and thats going to take more time....no wonder I'm so bloody tired!

Amazingfun

I really appreciate everyone who posts on here. It is a fascinating thread. I feel in the few days since I was told (out of the blue) that I have this thing, hypothyroidism, that I have been on a mystery tour/college course, ha. I have learned so much, and it has been just bizarre to discover how many of the 'symptoms' I have, but didn't even realize they were symptoms. Weight is a big one of course, I have put on two stone over the last 3 years), but, it is the cold hands and the hair loss/eyebrow hair loss that just amazed me. I had my fella look at my eyebrows last night and he was amazed himself when, just as described, I am missing a chunk right at the '3rd of the way down' mark. Also, my ice-cold hands have been the talk of friends and family for years---I used to just laugh it off, I had no idea there was actually a cause for this, figured I was just part zombie

Apart from all this I do have a question. My lab results didn't have a reading for the T3, and I am wondering....would you just start the T4 replacement hormone and see how you go before requesting a check of the adrenals/T3, etc? I am hopeful that perhaps I may be lucky and only need the T4 stuff.....but there seem to be so many talking about the other that I wonder if it's worth waiting? Is it better just to bite the bullet from the start?

I am to see my doc on Wednesday to confirm the hypo diagnosis and start my medication.

cyning

Sunny76 wrote: »

Thanks cyning - I have said that to the doctor about the T3 test but think when I am talking to him tomorrow I will push for it again. Thats true about the internet - no one really posts about positive stuff. Never really thought of it that way! Seems to be a lot of "bits" out of whack with me at the moment so as you said, time to get them sorted to give me the best chance of having a baby. I am 36 so feel like time is not on my side though. I wake up in a cold sweat sometimes that I have left it too late and now I have all these "bits" gone wrong and I have to fix them and thats going to take more time....no wonder I'm so bloody tired!

I always find the tiredness the killer: and thyroid problem or not if I'm tired getting out for any exercise is really difficult, then weight gain becomes a massive issue, and then I get miserable which makes me feel really down, which makes it even harder to do anything: its a terrible circle. I force myself to get out and about now, so it's not as bad. You could be really surprised what 6 weeks of Eltroxin and a bit of a healthier lifestyle can do. There's a really good TTC forum under parenting too for when you do start trying: you'll get loads of tips etc if you want/need them

Amazingfun I would wait and see. As I said (and look 100 people might disagree with me and that's okay too!) most people will do fine on T4 only, and it's always the worst case scenarios you read on the internet. The next blood test you get ask your doctor to check the T3, but start the treatment. There is no point in delaying, I think anyway.
And I know what you mean about symptoms! Good luck tomorrow.

It might take more then just T4, and it might take longer but you need to start somewhere

Kloecor

Been on Eltroxin about a year not. was feeling great. Now I feel like I'm going backwards again. Gotta get my bloods done again. I'm soooo freaking tired all the time!!!! Anyone else experience this ?

edellc

yep I hear you, only difference is I have lost all hope, every time I get my bloods done they all come back fine, but im not fine

doctor is dismissive so really i have reached the stage i couldnt be bothered anymore getting bloods done as nothing will change and nothing will be done so i give up

also on medical card so no money to pay fancy doctor to fix me, oh how i love being broke with no prospect of life improving, until he goes to school then maybe i can actually get a job to improve finances as creche fees way to expensive and then i can actually make myself somewhat better...horrah

such an optimistic sole i am

cltt97

Kloecor wrote: »

Been on Eltroxin about a year not. was feeling great. Now I feel like I'm going backwards again. Gotta get my bloods done again. I'm soooo freaking tired all the time!!!! Anyone else experience this ?

Well, for a lot of people it can be due to an increased need of hormone, for others it can be more complicated. So only way of finding out is getting a blood test done. But in general it is normal enough to get worse again when you need more hormone.

cltt97

edellc wrote: »

yep I hear you, only difference is I have lost all hope, every time I get my bloods done they all come back fine, but im not fine

doctor is dismissive so really i have reached the stage i couldnt be bothered anymore getting bloods done as nothing will change and nothing will be done so i give up

also on medical card so no money to pay fancy doctor to fix me,

Where are you based? I have heard of at least one GP who prescribes Armour which might benefit you possibly. So maybe no need for a fancy doctor, but just a good GP that is willing to look outside the box...

edellc

cltt97 wrote: »

Where are you based? I have heard of at least one GP who prescribes Armour which might benefit you possibly. So maybe no need for a fancy doctor, but just a good GP that is willing to look outside the box...

thanks for that, however just googled it and see its a pigs gland...lovely, I'm a vege so thats no going to work for me, will think of going back to docs and see if they will up my dose of eltroxin if i beg some more

cltt97

Well, in that case a combination therapy of T4/T3 might benefit you, or possibly T3 only. 100% synthetic.
If your levels are in the normal range and you feel crap more T4 is probably not the answer. There could be all sorts of different reasons, finding out what it is, is the tricky part. Have you had any of the tests done we usually recommend people should have to better understand what's going on?

edellc

I just get bloods taken, when the results come back I dont even get a phone call, I have to pester them and then all I get is yeah they all came back fine stay as you are

when i ask what my levels of t3 or t4 are she gives me a post it

i asked for a print out of the results just to have a record but never get it

and when i ask what is the normal range it seems different to what is posted on here so i actually havent a clue whats normal range what isnt and what i am as the last bloods i had where last october

cltt97

Think you need a new GP! Some of them are just very ignorant.

Normal range seems to vary ever so slightly from hospital to hospital and depends whether they test for free T3/free T4 or total T3 and total T4. Also depends what unit they are reported in.
Usually they test for TSH and FT4. Usually they don't test for T3 at all.

Galbin

cyning wrote: »

I always find the tiredness the killer: and thyroid problem or not if I'm tired getting out for any exercise is really difficult, then weight gain becomes a massive issue

I get what you are saying, but I don't think it is normal to have to exercise a lot to keep weight off. I'm not talking about things like walking, but having to exercise a lot to stem the tide doesn't sound like a fully optimised thyroid.

Even on non thyroid related forums, all the fully healthy people with hypothyroidism I've talked to were on T4 and T3. Some people can do okay on T4 for a few years (like my aunt), but after some time they generally find their symptoms return with a vengeance. There are just so many factors that affect conversion and sadly conversion ability decreases with age.

january 12

Hi all. I am a first time poster.

I recently had my bloods done and all were normal except that my TSH came back as 6.My GP said that this is above normal but she would like to retest me in 2 months’ time again and so far did not mention medication.

The reason I went to my GP in the first place is that I have been having awful stomach problems, acid reflux, nausea and a feeling that my stomach has just shut down i.e. food seems to lurk in there for ever and take ages to pass through my digestive system. I have suffered from chronic consitpation for the last number of years despite having a fairly good diet (fruit veg fibre, drinking water) and have previously suffered with stomach problems the cause of which was never pinpointed. I am now at the point where I have lost all appetite and no matter what I eat seems to cause me severe discomfort and reflux.
Do you think hypothyroidism could cause this as I understand it can cause the body’s processes to slow down? From reading these posts a TSH level of 6 does not seem to be extreme and I would have thought would not indicate severe hypothyroidism and should not cause such horrible symptoms. However, I am now beginning to wonder if my digestive issues these last 5 or so years have been caused by my thyroid. I have been feeling quite tired generally lately but was putting it down to work etc.I do not have any other symptoms such as hair loss.
Has anyone with hypothyroidism had experience severe digestive issues?

Wyldwood

january 12

a TSH of 6 is considered sub clinically hypothyroid. Unfortunately, the symptoms of thyroid, both hyper & hypo are multiple and vary vastly from person to person. I feel well with a TSH of 6 but someone else would be suffering greatly. Digestive problems are related to hypothyroid as your metabolism is slowed down. As we're not allowed give medical advice here I suggest you go back and chat to your GP. Maybe an endoscopy might be in order?

Meanwhile have a read of http://thyroid.about.com/

january 12

Wyldwood wrote: »

january 12

a TSH of 6 is considered sub clinically hypothyroid. Unfortunately, the symptoms of thyroid, both hyper & hypo are multiple and vary vastly from person to person. I feel well with a TSH of 6 but someone else would be suffering greatly. Digestive problems are related to hypothyroid as your metabolism is slowed down. As we're not allowed give medical advice here I suggest you go back and chat to your GP. Maybe an endoscopy might be in order?

Meanwhile have a read of http://thyroid.about.com/[/QUOTE]

Thanks Wyldwood.Don't worry not looking for medical advice-that's what I pay my G.P. for!
Just wondering if anyone else has experienced stomach issues that they could put down to their thyroid.

I shall be having an endoscopy in a few weeks so hopefully that gives me an idea what's wrong-and it may not be linked to my throid function at all-who knows.

LegacyUser

ziggy23 wrote: »

I'm currently on 300mg Eltroxin. I'm 28. Everyone I say this to seems to think it's a really high dose?

Hi Ziggy,

I'm on 200mg Eltroxin, had a full thyroidectomy in 2007, have had problems maintaining any stability when it comes to feeling 'my old self'. Unfortunately the tablets aren't a miracle cure.

Hope you feel better soon

Corruptedmorals

january 12 wrote: »

Wyldwood wrote: »

january 12

a TSH of 6 is considered sub clinically hypothyroid. Unfortunately, the symptoms of thyroid, both hyper & hypo are multiple and vary vastly from person to person. I feel well with a TSH of 6 but someone else would be suffering greatly. Digestive problems are related to hypothyroid as your metabolism is slowed down. As we're not allowed give medical advice here I suggest you go back and chat to your GP. Maybe an endoscopy might be in order?

Meanwhile have a read of http://thyroid.about.com/[/QUOTE]

Thanks Wyldwood.Don't worry not looking for medical advice-that's what I pay my G.P. for!
Just wondering if anyone else has experienced stomach issues that they could put down to their thyroid.

I shall be having an endoscopy in a few weeks so hopefully that gives me an idea what's wrong-and it may not be linked to my throid function at all-who knows.

I have IBS and hypothyroid- I have had TSH results of 10-12 before, and am currently on 125mg Eltroxin. My IBS symptoms are different to yours (but it's a delightfully vague and all-encompassing disorder) and came on suddenly 2 years after being diagnosed as hypothyroid- and about 8 or so years after showing signs of becoming hypothyroid. Looking it up, there is a suggested link between the two, but haven't a clue if mine is. I had an ultrasound, and both types of endoscopes in one day and no abnormalities, which indicated IBS.

I was advised on this thread to get my t3 checked. It gave a normal result, and so have all of the others- it is apparently periodically checked, just not every time. However my TSH was out again so more Eltroxin for me. I am not really experiencing symptoms associated with it- moreso very low iron- except for weight gain, but as I was under 8 stone to begin with and am just hitting mid 20's I can't even say that wouldn't have happened anyway. At the moment I am happy to continue seeing my GP with this, but am prepared to pursue seeing an endocrinologist if I am unhappy with symptoms, or if t3 starts behaving abormally.

Cora Mahoney

Having read this thread I think it possible that some of you will sigh in recognition of the following scenario:

I only just discovered I have hypothyroidism about six weeks ago. I was put on 50 mg of Eltroxin to start.
My Doctor is lovely and seems to be of the mind that this problem is easily fixed with the meds, but like many of you have reported I have not been feeling too good so far, although I did notice a nice sort of 'lift' feeling the first two weeks. The last month has been scary for me though as I have been fatigued beyond belief and worst of all, my lovely hair has been falling out like crazy

So I went back today for a blood test, and asked The doc if I should perhaps get my Adrenals checked now rather than later, and explained to her that some people on here have reported they don't do so well on the Eltroxin alone if they have a conversion problem (T4-T3, etc), and she looked at me like I had three heads! Now again, she is lovely but she told me flat out that she not heard of Adrenal testing and has not heard of any other treatment for this other than the Eltroxin. She had never heard of the t3 issue!

Now, we both agreed that most likely I will do fine, she thinks I just need to up the dosage of eltroxin and will let me know how my bloods come out on Friday, but my question is this: Do you think it's better to check for the possible adrenal issues and or/ conversion problems now, right at the start? Or is it best just to plod along and see how I go on the higher doses.
My Doctor is a friendly and kind person and I like her, but it scares me a little bit that she really and truly has no idea of what people are going through with this!

Comments appreciated

Oops, I meant to add that my TSH was 29 at the start, so am curious what it will be this time, as I am still experiencing so many symptoms.

cltt97

Hi Cora,

Welcome to the club!
It is quite usual to experience a roller coaster ride when starting treatment. I remember feeling fantastic when starting on the Eltroxin but it ebbed of after about 2 weeks and it kept going like that for ages, until I reached my "plateau". From my own experience, I would recommend not to up the dose too quickly. I went from 50 to 100 and almost keeled over, so I would recommend to only increase in 25ug steps as needed. The hair falling out is also common, so don't worry, it'll stop and it'll all regrow, I remember the horror days of standing in the shower being covered in my own hair!
With regard to all the potential problems - not sure what to tell you, some people go on Eltroxin and do absolutely fine and others just don't. You could ask your GP to get your Cortisol tested (ideally an 8am reading) to see if this looks ok. There is also an adrenal saliva test, you can order this from the UK and send back to them, costs about 100 Euro - or at least did when I did it... this measures the hormones 4 times a day to see if your natural curve follows its right pattern (i.e. highest in the morning and lowest in the evening). no GP or referral needed for that. It's still a bit of a controversial test though, not uniformly recognised by the medical world, but nonetheless used quite extensively. When I went with that to my endocrinologist he sent me for an ACTH stim test - but that's only something you'd do down the road if you really suspect that you have an adrenal issue. It's true that many people need/do better with adrenal support (i.e. hydrocortisone), but you do not want to take it if you don't need it, you could end up with even more problems (i.e. surpressing your own body's production and becoming dependant on synthetic supply). I would definitely recommend that you get iron, Vit D, B12 and folate tested. I have yet to meet someone on this board whose levels weren't too low. Low iron can play absolute havoc, so it's extremely important to get that one right.
So in summary, I would get some sort of NCT test - liver function, kidney function, full blood count, Vitamins D, B12 and folic acid, iron and morning Cortisol, and go from there. And most of all, you need a lot of patience - this thyroid lark takes ages to come right again, even if you don't have any of the mad problems people generally report on this forum! All the best.

Cora Mahoney

THank you so much for a really helpful reply.

And for the warm welcome

carorueil

Hi, I'm new to this forum. I'm trying to find a doctor in Dublin who prescribe ERFA. I want to get a second opinion on my current treatment for Hashimotos' and Adrenal Fatigue but need to be sure that I can continue taking ERFA. Could you pm with the name of the doctor who has prescribed ERFA for you? thanks

Wyldwood

Just wondering if anyone has tried alternative therapies, acupuncture, reflexology etc. I'm totally failing to get this thyroid problem under control. Latest test results TSH 7.06 (4-3.8), FT3 4.1 (3.9-6.7), FT4 13.8 (12-22).
Endo says, as T3 & T4 are in range & I can't tolerate any increase in meds above 25mcg, I will have to accept that this is the best I'm going to be. While I do have spell of good days I still have plenty of bad days when I have palps, jittering, lightheadedness, muscle pains etc. My ferritin is 22 (11-307) but doc says not a problem & as I have digestive issues I'm slow to take iron. I have high folate but don't think that's an issue with the thyroid. No problem with B12 levels.

Would love to hear from anyone who tried alternative therapies.

garhjw

Wyldwood wrote: »

Just wondering if anyone has tried alternative therapies, acupuncture, reflexology etc. I'm totally failing to get this thyroid problem under control. Latest test results TSH 7.06 (4-3.8), FT3 4.1 (3.9-6.7), FT4 13.8 (12-22).
Endo says, as T3 & T4 are in range & I can't tolerate any increase in meds above 25mcg, I will have to accept that this is the best I'm going to be. While I do have spell of good days I still have plenty of bad days when I have palps, jittering, lightheadedness, muscle pains etc. My ferritin is 22 (11-307) but doc says not a problem & as I have digestive issues I'm slow to take iron. I have high folate but don't think that's an issue with the thyroid. No problem with B12 levels.

Would love to hear from anyone who tried alternative therapies.

I cut all yeast and sugar out of my diet. I also took supplements such as selenium. After 2 months all my tests came back ok. I have posts earlier in this thread explaining in further detail. Maybe some of this could help you. I went to Restore on Camden st. Julie, the owner, was very helpful.

marymarcy

Wyldwood wrote: »

Just wondering if anyone has tried alternative therapies, acupuncture, reflexology etc. I'm totally failing to get this thyroid problem under control. Latest test results TSH 7.06 (4-3.8), FT3 4.1 (3.9-6.7), FT4 13.8 (12-22).
Endo says, as T3 & T4 are in range & I can't tolerate any increase in meds above 25mcg, I will have to accept that this is the best I'm going to be. While I do have spell of good days I still have plenty of bad days when I have palps, jittering, lightheadedness, muscle pains etc. My ferritin is 22 (11-307) but doc says not a problem & as I have digestive issues I'm slow to take iron. I have high folate but don't think that's an issue with the thyroid. No problem with B12 levels.

Would love to hear from anyone who tried alternative therapies.

I went to a naturopath type guy in waterford who has a great reputation and Ifeel great now, however as far as I can tell I had some sort of post viral fatigue as well as hypothyroid.

If you are interested I can pm you his details. I was miserable before I went to him. He does iridology and blood tests. He put me on liver salts, milkthistle, zinc, NADH, L-tyrosine and progesterone cream. That was 5 months ago, I am due back to him in ten days, at the moment I am only taking l-tyrosine and the progesterone cream, and still feeling fine, able to work full time, exercise, clean the house, meet friends, do classes, anything I want to do, whereas before, I was having to look into going part time at work.

I did some other things too, I have regular acupuncture, I greatly increased my fruit and veg intake, I came off the pill, I had triple antibiotic therapy for H-Pylori in my stomach, but the improvement came so quickly after I saw this guy that it has to be at least partly responsible for my improvement.

Wyldwood

marymarcy, thanks for the reply. I'd love to get the name of the naturopath please. I'd travel to the moon to find a solution to this illness at this stage.
After 30 years of stability on 100mcg Eltroxin after a thyroidectomy, I've had 2 years of hell since I developed a mysterious intolerance of the medication and can only take 25mcg daily now with the help of a beta blocker, which isn't enough.

Orla K

I saw this on thyroid change facebook page, he's saying that if you TSH is in the normal range you have somatoform disorder or a simple way of saying it your a hypochondriac and are imagining the symptoms. I don't know how he's getting a prize for that.

ThyroidChange wrote:

Are your lingering symptoms from thyroid dysfunction or mental disease? Prof. Anthony Weetman believes if a patient's TSH value is "in range" and they continue to complain of symptoms, it is a sign of mental disease. Novio Nordisk Fonden (Denmark) is honoring Weetman with the prestigious H.C. Jacobaeus Lecture Prize on 11/29.