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Thyroid question

(141 Posts)
wildflowersummermeadow Tue 14-Feb-12 09:24:50

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

Kormachameleon Tue 14-Feb-12 09:27:31

Message withdrawn at poster's request.

wildflowersummermeadow Tue 14-Feb-12 14:30:54

Thanks Korma...9 years?? you poor thing - are you getting the help that you need now?

I think my problem is that I wouldn't know what to do with the information even if they gave me details of my blood test results...is there a useful resource anywhere that could tell me what the results would mean and then what my options would be...it's so frustrating isn't it..

thanks again - I really appreciate your reply
x

freelancegirl Tue 14-Feb-12 14:54:22

Hi wildflower, you need to ask them your exact thyroid results and for, particularly, your TSH levels and T4 levels. Current general practice is a bit rubbish with supporting thyroid problems but usually it starts with the diagnosis. I am very surprised they acknowledge that yours is slow but won't give you anything. A look up a lady called Mary Shomon who is about.com's thyroid expert and an excellent source of info. Charity Thyroid UK can also be helpful. Essentially though if you're TSH level is anything over 5.0 UK docs should usually treat you with thyroxine. I've been on it since I was 21, for 16 years. If you want me to check out your thyroid levels call the docs and get the exact numbers.

wildflowersummermeadow Tue 14-Feb-12 15:12:14

Oh yes please - thank you, that would be a great help if you wouldn't mind...Just tried and amazingly got through to the doctors first time and spoke to someone helpful (!). Ahem

TSH 5.72
T4 12.3

thanks again
xx

catpark Tue 14-Feb-12 16:24:50

The T4 is on the low side and the TSH is high. You have an underactive thyroid. You really need to speak to a doctor about this. Waiting 3 months and then testing again is too long to wait.

freelancegirl Tue 14-Feb-12 16:40:42

Catpark is right, you have an underactive thyroid. The reason your doctor isn't doing anthing about it is he/she thinks it is only just a bit under. He is wrong though, there is even a whole load of research that would indicate having a TSH of anthing over 3.0 should be classed as under active. I know when my TSH goes over 3 I feel really sluggish.

Go back to the doctor, emphasise how crap youre feeling and go armed with some info from Mary Shomon about levels if over 3 needing treatment. Am on mobile at the mo so can't link but google and you will find.

On the plus side though, getting a diagnosis is a great step, taking thyroxine is not a huge deal and should hopefully have you feeling better after a few weeks. Ive managed to balance mine well for years now, keeping an eye on levels and moving gps until I found one who isn't stuck on the old normal levels!

RockinD Tue 14-Feb-12 17:38:55

Good advice from other posters. Your TSH should be around 1, so it's way too high and may actually be above range (ours stops at 5.5). Your T4 is too low, which implies that your T3 is also too low, but I am guessing you have not had that, or your antibodies, tested.

As others say, you are hypothyroid and you need to get those iron levels up before any thyroid treatment is effective. Can you get Hb and ferritin results and post them?

This is not going to get better on its own and you need to be treated. I have been eight years so far and still not properly treated.

Lots of useful advice on www.thyroid-disease.org.uk

Be aware that you may need to learn about the condition and then fight for the treatment you need, but it won't get better on its own and your GP should probably be put on the spot and asked why he won't treat you now.

Get those iron results if you can and we'll see what we can do with you.

D

wildflowersummermeadow Tue 14-Feb-12 18:02:35

Thank you so much everyone - I can't tell you how helpful this all is - it's amazing how you feel like you "shouldn't be a nuisance" bothering your GP...actually I think I may have had this condition for years...I was tested several times in my early 20s for glandular fever and they never found anything...what a waste of time and effort feeling so tired all that time if that is the case...

When I spoke to the receptionist earlier she gave me all the following results but I'm not sure I actually understood them properly...

Iron 6
Transferin 2.83
Iron saturation 8%
serum folate 19
b12 285
Something that sounded like serotonin 31

Are the iron levels connected to the thyroid then?

thanks again...I am starting to feel like a tremendous weight might be lifted off my shoulders imminently with all this support...

xx

freelancegirl Tue 14-Feb-12 18:27:04

I am not so clued up about iron issues so hopefully rockind will come back with more info on that but j second what she says about keeping your TSH level around 1ish. Hard to find a doctor that will agree though, but they are out there. I see a specialist for recurrent miscarriage (am currently 17 weeks pregnant) and he thankfully agrees around 1 is good, definitely under 2.0 if you are TTC or pregnant.

How is your weight? When my thyroid first went under I put on around three stone. It took me years to work out how to keep it down and be fit and strong but apart from the last year with three pregnancies I have mansard to be healthy.

Unfortunately as a thyroid patient (which hopefully you soon will be) you have to kind of take charge of it yourself. I really manage my own now, getting regular checks and adjusting medication a bit if I need to. Luckily my gp is supportive of that. Sounds like they also checked your selenium levels. Selenium can be low with thyroid probs as can vitamin d. I take both, again both v imp in helping maintain healthy pregnancy.

Sorry if this is a bit disjointed but on phone again! Happy to help further as am sure are plenty of others so do shout

mercibucket Tue 14-Feb-12 22:54:23

get your vit d levels tested as well and a test to see if you have antibodies to show it is an autoimmune condition, you can also do this privately if the gp won't do it
you will feel much better once you start on medication, good luck

jaype Thu 16-Feb-12 00:35:52

God, if my T4 was 12 I would feel like a dog's breakfast! If it dips below 18 I am a mess... It is only just in range so go back and ask why it isn't being treated if you clearly feel like crap and can't manage. The serotonin may have been ferretin? It's an iron storage hormone and gets depleted before your blood iron levels fall unless it's replaced. 30 is bottom of range, so that will make you feel knackerd too as you are only scraping through. Ask more too about the low iron and what the range for that is... When I had an iron level of 6mg they gae me a blood transfusion so presumably by lack of ambulance at door this is a different scale??

duchesse Thu 16-Feb-12 00:47:17

My TSH was 11.3 and my GP persisted in telling me all the clinical results were within the normal range. Well maybe they feel within their arbitrary outer limits of normal but I felt like shit. As the obstetrician who finally put me on thyroxine pointed out "You're not sub-clinical if you have symptoms". GP was an arse who abandoned me to being a vegetable for 6 years and tried instead to get me on anti-depressants.

wildflowersummermeadow Thu 16-Feb-12 09:10:32

Well NO WONDER I've been feeling so tired for so long! :-)

everything is starting to make sense

freelancegirl Thu 16-Feb-12 09:42:28

I had a similar story Duchesse. I was 21 and there being no real internet in the mid 90s was baffled when they told me my thyroid was 'normal' as I had all the symptoms. It took me a couple of years to get on thyroxine so I am guessing, from what I found out a few years later about the dispute with the normal range, mine was what I would now recognise as underactive and some GPs/labs unfortunately wouldn't.

Jaype I need to find out more about T4 and monitor my levels but I know my TSH is around 1 at the moment and (espec being pregnant) am happy with that.

Good luck WildFlower! Go and try get them to treat you! Take some research re normal levels of thyroid in there to help your case if you need. I started off on 50mcg of thyroxine and over the years this has needed to be increased gradually to 135mcg.

Whenisitmysleepytime Thu 16-Feb-12 09:58:43

Wildflower I went to the dr for exactly the same reasons yesterday!
I suspected my thyroid as it was out (can't remember how) when I wa having trouble ttc dc1. by the time I got referred to anyone I was already pg.

I now have 2dc and am the same as you! I asked dr about it ad he agreed to blood test but told me I'd be overweight or constantly fidgeting if my thyroid was low/ high.

I have to wait till end of month for blood test and then again for results.

Was tiredness your only symptom or did you have others?

Hope you get some help/ advice/ treatment!

jaype Thu 16-Feb-12 11:48:10

Freelance - lots of people do just fine on T4 only but some of us can't convert it into T3 (which is what the body can actually utilise). So bloods look great but actually the stuff is just swimming about in us doing nothing much at all. Also, if you are at the bottom of the thyroid range, fight! It's a range precisely because we're all different and while some are happy to jog along with a level of 12, others need a higher amount to feel normal. So if you all still feel rubbish, keep going back and back and back (or change GP) until they actually refer you to an endocrinologist or treat you...

tb Thu 23-Feb-12 23:15:45

In the US they prescribe 1mcg of thyroxin for every lb of body weight.

I finally started treatment 6 years ago after problems going back several years, and had gained 10 stone.

I can't remember what it is like to feel 'normal', and I hate gp's for their smug attitude that it is the easiest autoimmune disease to treat.

It has recently been acknowledged that of the people who give blood to construct the 'normal' range, 25% of them have an untreated underactive thyroid.

The best, if you can, is to find an endo who will treat you according to your symptoms. Mind does, BUT, she's in Limoges.

lovechoc Fri 24-Feb-12 18:26:40

I was diagnosed with autoimmune hypothyroidism (Hashimoto's) back in 2005 (when I was 21) and started on 75mcg levothyroxine daily, down to 25mcg daily and it really does need reviewed. I am still tired all the time, so I can understand what you are going through OP. It's sometimes a struggle getting through each day. Keep going back to your GP until you get treatment.

lovechoc Fri 24-Feb-12 18:30:50

duchesse I too was told it was subclinical (i.e. I'm not suffering full hypothyroidism!). Strange how I have most of the symptoms and my quality of life is not the best. GPs don't always know best. I remember I kept going back to see the same GP and she said 'I'll pray for you'! Unfortunately her prayers have not worked.. I did end up seeing a different GP after that.

lovechoc Fri 24-Feb-12 18:33:09

Many are unfortunately fobbed off with ' you have depression', rather than accepting that you do feel tired all the time, and have no energy to do a thing.

Mindy6 Fri 24-Feb-12 19:33:25

I suppose I was lucky in that my GP diagnosed an underactive thyroid immediately. That was 17 yrs ago. My levels have been been up and down throughout. My levels are weird though. TSH 0.0.5 and T4 11.5. GP says my T4 is suppressing TSH but T4 is low. Apparently there is nothing that can be done. So I trudge on, in zombie land. Some times it picks up on its own.

One problem is whenever I go on a diet my levels fall though the floor and of course the diet fails as I have no energy and my metabolism slows even more. This condition needs careful managing but in my experience over the last 17 yrs the only trmt is an increase or decrease in throxine. Its not good, but it is nice to know you guys know its real, it all sounds so lame to someone who doesn't have the same condition.

mercibucket Fri 24-Feb-12 20:05:26

mindy6, did you ever get your t3 tested to see if you are converting from t4 to t3? there are lots of support groups out there that can give more info as well

Mindy6 Fri 24-Feb-12 20:18:34

Not once in 17 yrs!!!!! What is T3?

mercibucket Fri 24-Feb-12 20:24:07

there are some greeat support websites out there. I found out a lot on thyroid uk (not everyone likes it I think, they are keen on non-traditional medicines for example). t3 is what your body actually needs - your body has to convert the medicines (t4) to t3 before it can use them. some people have problems converting from t4 to t3 and so their tsh and t4 look ok but they still feel ill. I don't know if that is how you feel? you usually have to order a t3 test privately but gp might do it if you ask. if you have a problem converting, you can also get t3 medicine, but probably from an endocrinologist not the gp
not an expert so excuse any simplifications

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