ZoeOddJob

Hi all, pardon me for butting in here, I have been a member for a couple of years but tend to read rather than contribute. However this thread has caught my eye, because since moving to Spain (again nothing to do with you guys) my hair has been falling out. I have had times when I have felt completely under the weather, aching limbs, cold, pins and needles. The reason I am posting here is because I feel that I have a thyroid problem but that my doctors do not recognise it. I don´t think the problem is very severe and maybe that it is stress related. I had some blood tests a while ago, my TSH was 4.5 which is within "normal" range, unfortunately they did not do T3 and T4. My doctors here have said that everything (according to my blood testsI) is normal and therefore will do nothing more. However, if the loss of hair was in the first place stress related then why is it still happening (two years later)? I still have days when I do not want to do anything, my limbs ache, I have headaches, but they are becoming less frequent, so that is a good sign?

Anyway, as I said I am butting in here and there is nothing more that I can do really as I have been to the doctors and had a second opinion on the results, it´s just that I feel that my doctors aren´t really paying attention to me. What can I do to make then listen?

moneypenny20

You're not butting in. BE is a worldwide family so don't feel bad about asking in The Barbie, I imagine there aren't many thyroid threads elsewhere on here and this one has some excellent advisors, the majority of whom are simply those who have had rubbish doctors and know more about the problems than many 'professionals'.

TiddlyPom

Hi Zoe.

That sucks and I realy feel for you. My health took a long slow decline too and my doc told me that I'd have 'to get a lot worse' before he'd treat me. I was already kilo's heavier, losing my hair, couldn't do anything, heart palpitations, digestive probs, couple of migraines thrown in there ... bloody awful.
AT one point, my TSH was around 6 and then it dropped to 'just in range' so of course, I was ok.

Anyway, what you can do is any of the following:

1. Change your doc and ask around for a good thyroid doctor. One who listens to symptoms rather than looks at numbers.

2. Write down all your ailments, no matter how silly or minor you think they are and take that list with you to your doctor.

3. Find a good photograph of you BEFORE you got sick... and ask your doctor to compare with you now. Hopefully like I was, you will look dramatically different.

4. Ask for a 'trial of thyroxine'. There's good clinical evidence which shows that giving someone a trial of this drug is harmless and if you improve ... then it shows something doesn't it!

5. Ask to be treated. If your doc refuses to treat you, ask him or her to write down on your records that they refuse to treat you or like me, take down what they say whilst you're there and then take that with you to the next doc. I went to my docs partner in the UK. He was much more sympathetic.

6. There's a list of bloods you need to have taken. .. it's on this thread.... and the last. Get your liver function, full thyroid panel, hormones etc done privately. Anyone can have those tests done. When you have the results, take them to an endocrinologist or a new doc and push push push!

I know you're exhausted but you have to keep going until you get somewhere..
Try not to take any supplements before you have your bloods done so that your TSH doesn't improve.

Also, before you have your bloods done, stay up really really late - about 2am if you can, and then don't eat breakfast before it's taken. This will bump up your TSH to a level where perhaps the doc might take you seriously.

After bloods, start supplementation.

Anything else I can help you with, just ask. Sorry I'm short on time this week due to school hols here, but will be around more next week.

Cheers hon.

Annabel

ausi dream

Hi Zoe! Dont give up on your blood tests. If you have had one blood test and it shows up all fine and you still feel like cr-p then keep going back to your doctor for once a month re check on your blood levels to make sure it has not changed.
It took two years to have my under active thyroid diagnosed as the first blood test read normal and then as i was getting worse and worse with not having any energy, hair falling out continuously and my weight was dropping down to seven and a half stone which normally you put weight on with hypothyroidism, but in the end my doctor tested my bloods once a month and it showed up that i had an under active thyroid, it was hard to find because it was going over active to account for such a loss of being under active.
But once i was put on thyroxine for my under active thyroid i started to see an improvement in all the symptoms i was getting, but it did take time and a regular blood check once a month then increased to every three month and now once a year blood test for the levels.
I think that the hardest part was trying to convince my doctor that i was not just tired from having my first born child and that it was a lot more than that.

TiddlyPom

Another good tip is to take your partner with you.... unless of course your partner isn't supportive.
If your doc is male and more used to 'man to man' bullshit, you'll find that they're quite useful to enforce what you're trying to ask for.
Sadly we still have a fairly sexist culture where some male docs can put it down to 'hysterical female syndrome'.
Take the bloke with you - they might as well be good for something.
(Big smiley wink just in case you thought I was being remotely serious)

Sleeping Beauty

Hi all................it has been ages since I last had a nosey on BE. I posted something on here on behalf of my S-I-L, and then I found this thread.

I have just been diagnosed with underactive thyroid - Hoshimotos (sp?). I have been started on 50mg Oroxine/Thyroxine tablets, bloods taken every 6 weeks to find my level, with the next bloods due beginning of September. I am presuming I will have to 'up' my dose.

Since I started taking the medication, I have put on weight - is this because of the medication? I have had a scan of my thyroid as it was very painful 2/3 weeks ago, which came back as 'expected' - inflamed, not smooth, undulating, and inflamed lymph nodes.

Since the diagnosis, I seem to be having more 'symptoms' of an underactive thyroid then I did before I was diagnosed

I have no idea of my levels - I don't know what it should be to be in the healthy range.

Any info would be greatly appreciated.

TiddlyPom

Hello SB. Sorry to hear that chick. Right, what you have is 'Hashimoto's' which is the same thing I have. It's an auto immune condition where your immune system cells attack your thyroid.
You may have other immune symptoms too - such as hives, itching, asthma or anything similar.... got allergies? Then this is part of it.

Your dose will have to go up. 50 is not very much but can suit some people. You need to take enough to be symptom free though... regardless of what the numbers say.

Right, well it can be. It can also be that you were going to put on weight anyway and it's just happened to co-incide with the T4 (thyroxine) that you are taking. Some people do have an allergy to T4, especially when it's been lab synthesised, though this is rare. Other allergies can come from the fillers that they use in the pills, but once again, rare. The most likely reason behind this is that your body is just wondering what's happened to it. The weight could be a little water, or just your system starting to shift after starting meds.

That should all settle down as you optimise your medication..... I would agree that's 'expected' too.


You may be having more symtoms because your bod has started to take up the drugs and it's not getting enough .. .I've heard of it happening before - happened to me too here and there.

Has your doc done a thyroid panel? IF so, then he or she should be aware of what your TSH level is, plus other readings - T4, T3, FT3 etc.

I really now need you to read through my and other posts on this thread and the other thread - it will take you hours but it will help you understand what the hell I'm talking about..

As a vague indicator, a healthy person's TSH is around 1. The T4/T3 thing is a ratio ...
However, you need to understand that the TSH test is just that, an indicator... not an accurate diagnostic test.

BUT because you have Hashimotos, then you have thyroid antibodies flooding your system. We need to get rid of those and get rid of your symptoms...
So if you have had blood test results, it would be great if you can post on here or PM me with them and I can help you interpret.

Start reading and try to understand what you've got and then we can go from there.


And yes, you'll have to medicate for the rest of your life, but it's possible to be normal, well and happy with this condition now it's been diagnosed.
I don't know what you think of your doc but if he or she is relying only on numbers to get you well, then you may need to consider finding another doc in the future. There are some people who do really well on T4 alone, and others who don't and need to seek more natural treatment (this thing we mention called 'natural thyroid' or 'dessicated thyroid' which is from pigs) which is considered a more natural and complete medication.
Anyway, it's early days for you and what you really need to do is slowly raise your T4 and get your medication to an optimum level where you are feeling really well.

Any questions let me know. Hope that helps as a starter....!

Oh and where in NSW are you?

Sleeping Beauty

Hi TP.........Thanks for your reply, as always

I read through this thread last night, doubling with watching the Ashes, and gleaned lots of info from it. I intend to read through the first one as well, possibly later on today.

My doctor seems okay, she did test me for Celeaic, after the initial diagonosis, but that came back okay. I do intend to go Gluten free though to see if that will help me, just been to Bi-Lo and got some bits. This decision is a big thing for me, as I do love my bread I will need to get gemmed up on that, as I have no idea about a gluten free diet.

I will ask her for the levels next time I go, and then I can moniter them myself. I was diagnosed with ashma many years ago, but to be honest, it never really kicked in, and i used my inhaler very infrequently. However, I think it has started to become troublesome for me, realising only last week that it is probably linked.

I am not overly concerned with the thyroid problem, it is very common, I just want to be able to be in the position to know about it and to know my body, and what I can do the help it.

I have just started my own business working from home (travel consultant), and so there is lots happening for me. I am also due to have ankle reconstruction surgery mid September, with a minimum of 6 weeks in plaster (oh what joy - I hate to be kept still and immobile and depend on other people), therefore, lots to cope with at the moment.

How is your life at the minute? I hope things have settled down for you.

We live at Port Stephens, stunning place.

TiddlyPom

Good result on the cricket, eh?
Ok, that's good you're reading ... first one has lots of good stuff in it though I'm sure I repeat myself a lot.

The irony with the blood test for celeaic is that sometimes it can come back negative even if you have a wheat or gluten intolerance! The only sure way to know is to have a biopsy of the lining of the gut. My test was neg, yet I go down for about 3-5 days if I have wheat now... so my only choice is to be g free. I don't find it difficult and now bake regularly with g-free flour etc. Did a delicious Madeira cake the other week. You wouldn't have been able to know the difference!

I also had asthma. It's completely gone now.

Excellent diet, good supplements (there's a link to vitamins and I'm sure I go on exhaustively about them on this thread and the other) ... and exercise. And do check out adrenal fatigue and treat yourself for that at the same time as taking your T4. They go hand in hand.
I like this site for readability and understanding:
http://www.drlam.com/articles/adrenal_fatigue.asp

Oh well done girl. That's great. I hope it goes well. Not so fab about the ankle reconstruction but I hope it gets you sorted....

Life is pretty damn good thank you very much. I'm very happy, my kids are great, my business is moving into some interesting areas, and I also met someone too. Life is good.

I like port Stephens v much. If you do need a good doc eventually to help you out, then mine is in Sydney and would mean also accessible for you from there if you needed to. She's Dr Berkowski in Chatswood. People fly in from all over to see her.
I hope you continue to improve... let me know if you need any help - can always chat with you on the phone or email.

blackbag

Hi all,
Hijacked the hubby's log in, to ask a quick question.

Arrived in Melbourne (St Kilda) from the UK yesterday and since the beginning of the journey I have been having single palpitations every 2-3 mins at different times of the day or night. It feels like my heart wants to jump up !! It is also making my head feel light and dizzy.
I am hypothyroid on tablets and have never had this problem before. I am on 100mcg but prior to leaving the UK was a bit intermittent with my daily dose!!

I wondered if anyone else had this issue and did they need to see a doc about it, as we have not got a doctor yet as we dont know where we will end up living.
It is more annoying than anything else as even if I relax it still happens.

Thanx for any help xXx
Blackbag's Missus

TiddlyPom

Hi Blackbag
I'm so sorry I missed your post... Your palps could be to being under medicated OR over medicated!
It's hard to tell without accurate tests to know what's going on with you. It's worth your while just to book into a doc and ask for a full thyroid panel which should give you an indication of what's going on.

How long have you been on T4 (thyroxine) at the dose you mention?

It could well be that stress and the move have messed you up a bit, plus a change into warmer weather could also have caused your metabolism to speed up.

How are you feeling now?

binbird

I think I'm a fellow thyroid sufferer though I did believe that I had once had a problem which had gone away.

I know I need to see a Dr but I just thought I'd put out some feelers first. I suffered with an underactive thyroid after the birth of my third child. I was tested for loads of things but all came up blank until my Dr suggested we test the thyroid. I was put on thyroxine (can't remember what the dose was but it was small) The Dr explained it could be a post -pregnancy blip so after a year on the tablets he suggested I come off them but I went into decline again so got another prescription. Six months after that we tried again and I have been fine for over 6 years.

However, this winter (which has been mild) I have had one cold after another and have generally lacked energy. However, over the last few weeks my neck has been constantly aching and I have had lots of headaches and when I go for a run I have difficulty breathing. I know I have also had a few occasions where my heart has been racing so I suppose this is a palpitation! We have had hazard reduction burns in the area over the last week which have made breathing difficult for me and this is not usually a problem and today with the dust in the air I am struggling a bit again.

Like I said, I will go to the Dr but I just wanted to post here for reassurance. I know I probably got off lightly the first time but it looks like the old thyroid problem is coming back for another go!

TiddlyPom

Hello Bin!
Yes you're right, it could be back- or it could have never gone away...... But you need to test to see if you have thyroid antibodies which will tell you if you have Hashimoto's or not and what exactly you do have.

The thyroid is a funny thing and usually takes about 6 months to recover after pregnancy... That 'nesting' thing you get a few days before is the thyroid revving up for the birth.... and then it just goes down for months.
There's also a temporary thyroid condition which can be associated with pregnancy, and then it goes away afterwards, usually.

There are other conditions, where the thyroid goes hyper and then hypo... and quite often, when it's struggling, the thyroid can actually go hyper before burning out completely... It's a sod really.

Now, aren't you Northern beaches? I was up your way at the weekend - fab party! Because if you're Sydney based, you can visit the one and only, rather brilliant Dr Ludka Berkowski in Chatswood!

Find here here:
http://www.thyroid-info.com/topdrs/australia.htm

She's responsible for giving me my health back. Well, that and a little hard work from me.

Yes, racing heart is an energy conversion thing... headaches and colds wouldd indicate your immune system is having a tough time, which is why I suggest the Hashimoto's. Don't take any vitamins or anything until you've had your tests... and then we'll go from there.

Let us know how you get on at the doc! Good luck.

Safin

Having felt like crap for years I managed to get myself referred to a rhuematologist out here as in my former Uk life an earlier referral suggested monitoring for RA. Still having tests re that but also.....

This Dr immediately picked up on a large lump on my thyroid as beign a possible cause of many of my symptoms. (underactive rather than over).

This week had bloods done (no results yet) and ultrasound on thyroid. Today picked up the results of ultrasound which shows one large lesion which is complex (cystic/solid) and several similar smaller ones as well as colloid ones.

I'd thought that thyroid problems had been ruled out years ago because previous blood tests shows tsh levels of 0.52 and 0.44 and T4 of 18 and 15 which i was told are normal.

I know I need to wait for dr to see what comes next but feeling pretty alone right now and don't know what to expect next.

munch

Been reading the threads with interest and can't believe how many people suffer from thyroid problems.
I went to the doctors a few weeks ago with my son, he had a virus, the doctor asked me how long had I had an enlarged thyroid and nodule? Didn't have a clue I had anything wrong with me but he could clearly see it.
Had blood tests, scans, radioactive iodine scans and then finally a biopsy of the large nodule all within weeks. It has been a very worrying time for myself and my family and unfortunatley all the results have come back abnormal, apart from the blood tests which showed my thyroid leves as normal!
Met with a thyroid specialist and he has decided to remove half of my thyroid next month and they will check for cancer, if fine then no more treatment but if not they will then remove the other half and I will have to have the replacement tablets for life.
My surgeon did put my mind at ease a little after weeks of worrying, he said it is very common to have thyroid problems and nodules and lots of people live with it and don't even know, he said if it is cancer is it the least aggresive form you could have. He also said because I was young and healthy it is very probably benign and not to worry, although I am.
Strange thing is my mum has just had a radioactive tablet and been in isolation for a few days to reduce her hyperthyroidism and goiters, think is was a done deal that they would operate with there being family history as well.
Just so glad I went to the doctors that day and had a doctor that was alert, don't think it would have been the same at the doctors I went to in the UK - would have still been waiting for an appointment!
Just typical, never had nothing wrong with me when I had support in the UK then move to the other side of the world away from family and friends and this happens.