Thyroid question

[wildflowersummermeadow]

Hi there

I went to the doc recently about constantly feeling fainty and weird and exhausted and ill all the time. I was expecting it to just be "lack of sleep" (sleep-averse 16 month old, sigh), but the doctors receptionist rang me back with the results of a blood test

"your blood test results are back, they say low iron and low thyroid...doctor says you don't need to do anything. come back in 3 months for another blood test"

does anyone happen to know why i might be waiting for 3 months for another test? is this something that can get better by itself then? or can there be different degrees or stages of the problem?

the only info i can find on the web seems to say it's a long term thing that requires medication...

thanks xx - just in case anyone has any experience or can offer any advice - can i help my thryoid myself?

xxx

I have had an underactive thyroid since i was 23 (now 34) - initially diagnosed after a missed miscarriage - the doctors think the untreated thyroid caused it (can do in many cases) as i had many symptoms before (tiredness, feeling cold, dry hair etc). On diagnosis TSH was 15.5.

I started on 25mg and have had blood tests every 6 months since (more when i was pregnant with both dds) and now take 100mg.

Personally i dont think of it as a big deal - if your meds are right it shouldn't have any impact on you? - Maybe im lucky but annual blood tests seem enough for me and have no complaints with my GP?

Personally i dont think of it as a big deal - if your meds are right it shouldn't have any impact on you?

That's the point though - if your medication is correct it will not have a great impact.

If though the gp and endocrinologist will only treat on blood test results and your medication isn't correct - then it has a very big impact on you and is a large problem to your well being and health

Yes Sunny, I know people like you - some never had any symptoms before they were diagnosed, and don't have any now. Those are the lucky ones. I wish I was in that category.

There are thousands of others who are not.

I first went to my GP in 2004. I had eight different diagnoses and all sorts of investigations for one symptom alone in the next five years. It was 2009 before my vits and mins and my thyroid were tested. By that stage I was well on the way to being house/bed bound. On a good day I could stand for as long as ten minutes at a time.

It took a further 18 months to get a firm diagnosis and I started treatment just over six years after I had first gone to the GP. Because we can't get my iron levels right, thyroid replacement doesn't work properly for me, so nearly 8 years after I first went to the GP, I am still not 100% well.

You are indeed very lucky. Please spare a thought for the rest of us.

D

curious to know about the iron levels as I have been on daily iron for 18 months now - my levels are going up but only very slowly.

I went to see the doctor initially because i noticed my hair was going thinner and she tested iron. they were at 10 and doc said normal range was 15-300 and so wanted me way up at the top before further tests re hair. After 18 months of daily iron its still only getting to 65? I don't take them at the same time.

I cant understand why doctors take so long to diagnose in some areas? My GP ordered a blood test one day and prescribed the next day once the TSH level came back? Is the problem nationally about getting the blood test or the docs not interpreting the results properly?

I have read about people suspecting thyroid when bloods are normal but surely you cant have it without the bloods showing up or can you? The way the doctor explained it to be was the whole negative feedback mechanism of TSH high because thyroid not working - if TSH normal then is the thyroid not okay?

It depends how you define 'normal'.

All these tests have a range. For example, the TSH range here is 0.35 -6 and the FT4 range 9-26. The lab does not routinely test FT4 if TSH is within range. To be optimal, for most people, your TSH needs to be around 1 and your FT4 in the top third of the range and you can actually be very unwell but still within range, as I was with a TSH of 3.18 and an FT4 of 13.

Look as well at your iron. You've quoted a range of 15-300. Your level was 10 - below range, so no argument there. It's rising, slowly, probably slow because you are hypo, it comes with the territory. You need it to be somewhere between 70 and 120 to be optimal. You were lucky in that you were below range and got treated. At one point mine was 16, so one point over the start of the range and I was told 'You're within range - no action needed.' How can that be right?

The basic problem is that most GPs understand that if the TSH is out of range they need to get some thyroxine down the patient. In general they don't seem to understand what to do with someone with thyroid type symptoms, which can be very general, but results within range. That's when they go down the CFS or depression route.

It is a national scandal and there's a lot of work going on to bring this to the attention of those who need to know.

D

It is indeed a national scandal
Many gp's know nothing about it, it appears, so the conversation goes like this ...
I still feel ill
Your bloods are in range
I still feel ill
Repeat til you feel like throwing yourself under a bus

In fact, all they need to do is increase your meds! How crap is that!

Some people feel good at the top half of the reference range - lucky tham! Others need it near the bottom - unlucky them if their gp hasn't read the basic guidelines for treatment

Others are even more unlucky. Tsh has a very loose connection to what's happening in your blood (t4) and where it really counts (t3) so some people have great tsh and maybe ok t4 but crap t3

When was the last time any of us had our t3 tested - apart from privately?

As for the weight issue - to the person that had a gp say that the weight was not an issue with thyroid illness.

Ask your go how come someone with hyperthyroidism can eat 5000-6000 calories a day and not put on an ounce of weight? Hyperthyroidism is known fact that you can lose weight whilst increasing your food intake - it is one of the signs you are ill...

having hypothyrod illness will have an effect on your weight but in the opposite range

When was the last time any of us had our t3 tested - apart from privately?

roughly every 6 weeks in 2011 and once so far in 2012 on NHS

Omg ivykatie - seriously??!!
No wonder you feel well! There is no way on earth any of my gp's would pay for that, nor even countenance the idea and even if they asked, it would be refused by the bloods people
My mum can't even get her t4 tested - tsh only in her health authority - even though she is both symptomatic and has tsh over 5 - they still won't treat or run more tests

I hope you know how lucky you are! And perhaps see the connection to your good health
You have an awesome gp
How about the rest of us, more symptomatic people?

the consultant does it - not always my gp.

I haven't always felt well over the last 18 months and believe me have not been happy with my consultant upping or lowering my medication without actually seeing me and listening to how I feel - it doesn't work using blood test results alone. The last alteration in medication I went back to my g and we decided to stick at what my does was as I am well on this dose for the moment.

it is like trying to hit a moving target and the consultant seems to think she can do that by feeling and not use her eyes - bit like blind fold darts match...

As soon as I get up, I want to crawl back into bed! I am exhausted, have the dc, a high pressure job and am running on empty. My hair is brittle and thinning, my eyes and skin are dry & am putting on weight.

I have been underactive for 16 years, having been overactive before that. I take 100mcg of thyroxine, was previously on 125mcg but they reduced it after dc3 the test results indicated I was being over-treated (although I felt fine)

Had my blood test result today and I am 1.5TSH, similar to the one in December and according to the GP well within range. He has now ordered a fasting blood test with full blood count and liver function - is this likely to get to the root of the problem?

should say '3 dc', not 'the' dc

I have had a lengthy correspondence with the head of our local Path Lab and now I get my tests done on the NHS as requested by the doc, but it took two complaints and a year to get there.

I was told that FT3 is ?of little value?. Well not if you?re on T3 it?s not! I was also told that if TSH is within range then no other tests are necessary. Rubbish!

In answer to your question Nesh I would have thought it was unlikely. What you really need for starters is a full thyroid function test FT4, FT3 and antibodies, together with Vitamin B12 and folate, ferritin and Vitamin D. That will tell you exactly what is going on with your thyroid and whether everything else is at a level which means your thyroxine can get through and do its work.

D

I like this thread :-)
I am learning lots. You are all v proactive. Well done rockinD on all you have achieved (how did you get t3 prescribed) and ivykaty44 - I like your 'blindfolded' analogy.
I am v v cross atm with my gp's for
A - not listening
B - not even following guidelines
I was only diagnosed in nov/dec but everything since then has been down to me, not them. What about other people who might take what their gp said as gospel? And wonder why they still feel terrible and have no energy (or hair)
I will eventually go private if I don't feel better soon but how crap is that for an nhs system

Thank you RockinD, that's really helpful.

Now to persuade my GP!

Can I join in too although I seem to have the opposite issue to most of you! I had a blood test because of having heartburn (suddenly and all day long after never having had it before) and it came back that my thyroid might be underactive but I have none of the symptoms you all have - apart from being very overweight which I just thought was down to me eating a lot (probably is!!) and also have the droppy, miserable looking face when I don't smile which I really hate but thought that was just my age (47) which again it might be! Also have the heavy arms - again just thought that was me being unfit and fat!

Anyway as I had no symptoms they said test again in 2 months which I did and it had got worse so have just started on thyroxin. I didn't even ask my levels but have just called GP and mine were TSH 5.3 and T4 9.9 so seems my GP acted before it got bad so I've been really lucky then?

How long before the tablets have any effect? Not having had any real symptoms not sure I will notice! Will I lose weight?!?!

Sorry to hear you have all been suffering for so long and are struggling to get proper treatment - I feel really lucky now.

I do love the nhs tho - and actually always really liked my gp before this - she is great with my kids illnesses
But aaaaargh to this thyroid disorder and treating it by gp alone - when they haven't got a clue!

Oh and I was put straight onto 100mcg per day which seems a lot compared to some of you! I have to have my blood checked again in 3 months' time.

Welcome listmaker - great you are getting prompt treatment. Some people go straight onto 100 - just let the gp know if it makes you feel a bit 'hyper' - heart racing, palpitations etc
A colleague of mine never had any symptoms and it was found during routine blood test - she says she didn't notice much difference on the meds apart from sleeping better

Thanks merci - think that I may be like your colleague but have only been on the tablets for 5 days - any idea how long before any changes would be noticeable? No heart racing etc yet either.

Also the GP mentioned that I had signs of the anti-bodies too - does that mean I have hashimotos then?

I was given the diagnosis in a phone call and didn't ask all the right questions at all!

I'm having a nightmare with my thyroid too, my TSH has always been well below 1, my lowest was 0.29, my highest 0.70, my last test in Dec was 0.39, just a smidgen above the 0.30 cut off, I'm mega pissed off.

Most of my symptoms are underactive, the complete opposite to my bloods, aching bones/joints, weight gain, knackered, feel cold, any amount of sleep isn't enough, lack of appetite, but I also get palpatations, anxiety, restless sleep etc.

I have a 3cm nodule on the left side of my thyroid, I had it rescanned 3 weeks ago and they have now found one on the right side too, I'm waiting for another US appointment as they want it scanning again to see if it's grown in 4-6 weeks. I had the left nodule biopsied as it was solid and very vascular, results came back as a colloid nodule. My lymph nodes in my throat are all swollen too so my neck and the bottom of my face look fat.

My T3 & T4 were checked when my 0.29 came back but I can't remember what the levels were, the GP said they were normal though. They haven't been checked since, it was about 2 years ago.

So fed up of feeling like crap, feel 20 years older since all this started after the birth of my 4th child.

hello again - i hadnt realised there were so many people out there with thyroid issues - diagnosed or otherwise.

I have just thought about it actually and i have 2 work colleagues who are hypothyroid, 2 friends who are hypothyroid and one neighbour who is hyperthyroid -and that is just the people who wish to disclose their medical conditions - could be many more in my circle who choose to stay quiet.

Listmaker - that is interesting that you had heartburn and then got a diagnosis. I have had intermittent heartburn over last year or so but hadn't really put it on my list of symptoms - I thought it was something that cropped up when i ate spicier foods (although not always correct) - my other theory is that it happens when i am particularly stressed (v.v. busy day = heartburn at some point). I wonder if heartburn/acid probs are a symptom.

Does anybody else feel better as the day goes on - I wake up feeling tired and feel tired all morning but just now - - 4.30pm feel quite normal. I find that this happens quite regularly.

I have appointment tomorrow so will report back. Katie

It has been really interesting reading this thread. I was diagnosed hyperthyroid this time last year and am currently awaiting a hemithyroidectomy because of a 4cm nodule in my the right lobe of my thyroid.

I was particularly interested to read that other people have the droopy face thing. I have had that a couple of times and I swear that sometimes my symptoms veer between hyper and hypo. I have spoken to the endo about this but get the usual response that my blood tests are all normal and so my symptoms must be related to something else - they usually tell me it is menopause or depression!

How did I get prescribed T3? well, I'll tell you!

I was originally put on 25mcg thyroxine, which was enough to knock out the thyroid function I had, but not enough to replace it. The Lab wouldn't test FT4 because my TSH was within range and my GP insisted I waited for my next endo appointment. He wouldn't raise my dose. After six weeks of this I felt so ill that I stopped taking it and gradually felt better.

When I actually had the next endo appointment my TSH was rising quite dramatically and my FT4 was falling so the endo offered me T3, yes just offered it to me, and I decided to go for it.

The improvement was almost instant, even on 5mcg a day. Some of my symptoms disappeared there and then, never to return. Others come and go. I am still symptomatic and would like to try taking more but they won't give me any more, so my saga is not yet over.

D