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Newly diagnosed hypothyroid

(20 Posts)
Bellejournee Sat 23-May-15 09:47:23

Recently diagnosed with hypothyroid after a blood test. I don't have my results to hand; however, doctor said they were extremely low (I think one of my results was 0.04) and couldn't fathom how I was even functioning. I have no obvious physical symptoms (other than being overweight and tired) - I've recently given birth, but have felt tired since pregnant with my first child three years ago. I'm worried I may have had this condition for quite some time and my children are now affected too.

I'm not really sure what happens now? I've been prescribed levothyroxine at 50mg, to be increased to 75 after two weeks. I'll be having another blood test after two months. My cholesterol is also very high.

Are there any questions I should be asking my GP, should I ask for a referral to an endocrinologist? My partner is very supportive, but is questioning lack of symptoms 'google' suggests one would have with this condition. Even the doctor said I did not look at all like someone with it.

Are there any foods/vitamins that may help?

Apologies for all the questions, it's all very new and overwhelming to me.

Thanks in advance.

Pleasemrstweedie Sat 23-May-15 13:43:35

Welcome to the thyroid world.

It would be worth your joining the ThyroidUK community at www.healthunlocked.com.

From your post, there doesn't seem to be any lack of symptoms. You say you are overweight and tired and your cholesterol is very high.

sanfairyanne Sat 23-May-15 16:41:41

you will need to make sure your dose is increased until your symptoms have gone and your t4 is high in range. your gp might not do that

ask to have your b12, ferritin, vit d tested at next bloods. at least one will almost certainly be too low and need supplementing as well

hope you feel better soon.

IsJustMe Sat 23-May-15 18:15:56

I would also recommend looking at HealthUnlocked - there are some very knowledgeable people on there, and lots of very useful information about it all.

Bellejournee Sat 23-May-15 18:36:07

Thank you all smile

ItsADinosaur Sat 23-May-15 21:49:15

I would get an actual copy of your blood results, you're perfectly entitled to them. I always ask what my numbers are as I like to know. I'm not sure what is 0.04, it can't be your TSH as that would make you hyper not hypo so I'm a bit confused. Maybe someone else can help. I got diagnosed after my DS was born, I didn't lose any baby weight until I was on medication. Make sure you take your thyroxine with water and at least half hour before food. I think an hour is idea but with the DC I don't have time.

Madcats Mon 25-May-15 20:28:33

The thing about getting hypothyroid is that you don't really notice! Babies seem to trigger it in some of us. Aside from having to remember to take a couple of tablets each morning being hypothyroid barely affects me 15 years on.

Looking back it took me several years before I felt ill enough to go to the doctor with vague symptoms. Like you, I had virtually no thyroid hormone in my body by then. Friends and colleagues noticed a massive change when I went back to work after 4 months of being signed off (apparently I spoke so much faster and responded to things so much quicker).

You can expect to spend several months getting used to the medication until they arrive at a suitable level.

If you haven't already done so, apply for free prescriptions (put bluntly, you die if you don't take the medicine so the NHS gives it to you for nothing). The exemption card lasts 10 years.

My pharmacist recently remarked that I ought to be having calcium tablets (nice to know after 15 years!), so try to get those too.

Otherwise, eat well and get plenty of exercise and adequate sleep. Get a blood test every year to confirm that you are on the right dose, even if you think you are.

If you hope to have another baby, head to the GP as soon as you think you might be pregnant so they can monitor your hormones more actively again.

Bellejournee Mon 25-May-15 20:38:48

Madcats, thank you. Much appreciated. I've been taking the tablet for ten days and already I seek less tired. It's strange how used to feeling constantly exhausted was my norm. It's most definitely a good strange to feel less tired though ;-) I do feel up and down though, bit tearful then fine, but that could be pmt. Will look into calcium tablets as I hardly have any in my diet.

Sorry if a dumb question, where do I apply for the exemption card?

helzapoppin2 Mon 25-May-15 21:08:06

You should ask your doctors for form. I sat there and filled it in and then handed it back to the receptionist as, I think, the doctor has to sign it, and then they sent it off. Card arrived soon after.
I found out I was hypothyroid while having other tests. Apparently I was very hypo, like you, and may have been for years. It's a hereditary thing, and my brother was found to be as well.

Bellejournee Tue 26-May-15 13:30:06

Thanks Helz!

Clarella Tue 26-May-15 16:15:24

Hi op!

You can carry on for a long time being hypo. It does drain lots of resources though, esp if you've been like that for a while, so recovery may take time too.

Health unlocked is good, but I can summarise a lot of what you'll read there.

I really really recommend getting the BMA book by Dr A Toft, on Amazon. Not least that it explains the optimal meds and blood results we need, which SOME gps MAY not be aware of or consider necessary. You can wave it under their noses wink, stamped BMA so 'kosher'.

It also explains tests clearly. And explains treatment, including why SOME are trying combo t4 and t3. T4 (thyroxine) however is easier to keep track of so if you can feel well in that it's better (more stable as longer half life) but, consequently, blood results should be optimal. Not mid range, unless you feel best like that. GPs SHOULD ask you how you feel at dose levels, but you need to be aware it can take 3 months to actually feel better sometimes.

It will take a long time to feel well I'm afraid. A dose change can take 3 months to fully show in blood tests or in your body, due to the long half life, though you can be tested after about 6 weeks. So you can see that getting the meds right can take time.

As cholesterol is high they are raising you slowly to avoid angina issues etc.

Keep a record of your tsh, any t4 or t3 results (unlikely tho to have t3) and your cognitive ability, muscle strength and general well being. Ask for these each time. A Tsh of 3 is classed as normal, but some would struggle. A Tsh of 0.5 is also normal but you might feel great. So good to find your ideal.

Quite a lot interferes with absorption of thyroxine, so read how to take carefully. You can miss a dose and take next day no problem due to long half life.

Smallest tablets are 25, I find I have to adjust my dose to 125/150 alternate days to get the best level for me.

Definitely ask for ferritin to be checked, vit d, b12 and folate. Low thyroxine affects muscles; theses need iron to recover (and b12). These do need to be optimal but gp might not think about it. I've suffered at ferritin was around 50 for a couple of years - borderline - but it became clear I needed it to be 80+ to feel well following a thyroxine slump post preg.

The endo I saw agreed and things I've read on health unlocked and here seem to indicate 70+ is best. My gp now comments my iron is normal -I think it's usual that actually ferritin gets much lower for there to be issues,but for us it's best to be optimal. (Iron interferes with absorption though so take apart) best to get test and discuss with gp.

For now you might find taking ferriglobin and another vit d thing helpful, but if you're really low you'll need prescribed.

I think your family just need to know it will take a while for you to feel better. You may find you notice how I'll you were when you actually get better, iykwim?!

kickassangel Tue 26-May-15 16:35:38

I think I'd been hypo for eight years before I was diagnosed. There are some symptoms I've had all my life,but doctors laughed and said I was too young, I should just do more exercise or eat less. Then after Dd I just kept getting ill, and needed anti-bitoics a lot. MY GP tested me, but I was on the upper edge of OK, so it went no further. Then we moved house, I got a different doctor, and I just carried on with life thinking, oh well, I need to accept I just feel tired a lot.

Eventually I went to my new doctor, and told her how I felt. She tested for everything, and within 24 hours had phoned me back to say that the meds. were at the drug store, and that I must pick them up NOW, and I must start taking them TODAY!

Anyway - it took about 2 weeks to being able to make it through the day, then another couple of months to feel OK and I could do a full days' work, and 3 years later I think I'm at the right levels, and maintaining them.

So - you are likely to notice a bit of an improvement fairly quickly, but to actually be 'well' rather than just less ill, takes months.

You are likely to also have anxiety/depression, so it's great that those can just fade away as you get better, but be aware that you're physically and emotionally drained - don't be afraid to ask for help and give yourself a break when you need it.

ItsADinosaur Tue 26-May-15 16:57:06

I keep reading about the ferritin link, mines only 9.

Clarella Tue 26-May-15 19:19:00

I have actually also started taking calcium and magnesium tablets in the evening (also interfere with absorption), partly as I'm bf, partly as I'm ' hypermobile' and had a load of joint issues since baby, but you can be at slight risk of osteo issues too.

The British thyroid foundation are a charity who are really supportive and a good source of info. I find the newsletters and website helpful - for example it was how I discovered that I was on a brand of thyroxine that was withdrawn as it wasn't the correct dose, while I was pregnant (caused issues getting dose right)

They are the charity associated with the British thyroid association of consultants. They are more 'official'. I sometimes worry about some of the posts on health unlocked but the admin do try to keep it on track.

kavv0809 Tue 26-May-15 19:25:03

Another thing to possibly ask is if you have the antibodies of an autoimmune thyroid disease or if it's just under active.

The treatment is the same so they don't routinely do the test. I didn't get checked for autoimmune until I asked, and it turns out I have it - so basically my body is attacking itself. I found it useful to know this because if you have one autoimmune condition you're prone to others.

Clarella Wed 27-May-15 09:35:03

Kav - that is true, and you're right that we need to be aware of other conditions (toft book lists them, for waving at a gp to check) BUT it's highly likely that in this case it is autoimmune, gradually deteriorating since child birth or earlier.

For some reason when I was diagnosed 17 years ago I did have an antibody test. I think now they only do it if results are borderline, as yes it will go eventually. Very occasionally it can be a result of other things eg virus and might recover. But if the results are off the scale as in the ops case, it will be autoimmune, and not really hugely helpful to test. BUT yes, there could be other linked conditions, which might need to be tested in the future if symptoms occur.

Clarella Wed 27-May-15 09:36:08

(Just explaining why a gp might not agree to test)

(They might have done so already?)

Bellejournee Thu 28-May-15 20:19:11

Thank you everyone for your comments. Lots to read up on and some good tips.

I've dec got to look into taking calcium as it's seriously lacking on my diet. Do you just take a vitamin of get something prescribed from the gp? I used to take a b vitamin before I was pregnant and swore by them, felt so energised - would I be ok to go back on them or is it a case of getting something prescribed.

Really appreciate all your advice she help.

Two weeks in since I was diagnosed and having some very sleepy/lethargic feeling days (napping with my baby and waking exhausted) and other days where I feel less tired.

Bellejournee Thu 28-May-15 20:20:19

Excuse typos! New phone and awful predictive text...

IsJustMe Thu 28-May-15 21:09:58

My understanding of taking calcium supplements is that it is not recommended unless you know you need it (my doctor did a blood test). Overdosing on calcium is definitely not a good thing.

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