Where do I start with symptoms and how to proce... - Thyroid UK

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Where do I start with symptoms and how to proceed with GP

le2333 profile image
22 Replies

Hi I'm new to this site and have been suffering from fatigue, weight gain ( worse in the last 6 months) I've gone from being just under 10st to nearly 13st in 18 months with no change in diet. I have 4 kids so can really do without the constant fatigue. I work full time as well. My symptoms over the last 18 months in no particular order,

Apologies feeling like I am about to choke and feels like I have a constant lump in my throat and it looks swollen, dry itchy skin that is worse on my feet, pain in all my joints, no sex drive whatsoever. Depression, anxiety, panic attacks, blurry vision, dry mouth despite drinking 2ltrs a day, really heavy periods coming every 15 days. ( just diagnosed with fibroids) ridged brittle nails , hair resembles straw no matter how much conditioner I use. Mood swings, increased urination, bloating, constipation, either too cold or too hot no happy medium, restless legs but can feel like lead weights. Also keep getting what look like blood blisters on calf, low pulse, dizziness when I stand up too quick and last but not least sleep it takes ages to come despite being absolutely bone tired but I don't feel like I have slept at all. I am 42 but feel 102! I was reading through some of the posts on here and oh my I'm like a walking advert for underactive thyroid. I actually plucked up the courage last week to go back to the doctor and explain everything that I have been feeling. She was fairly understanding and has ordered blood test with thyroid mentioned on there saying unknown presentation not sure what that means. Plus ferritin, B12 and a load of others on there. I wish I had discovered this site before I went for the blood tests. I think it is safe to say I have hit rock bottom with how I am feeling which is why I have ended up here asking anyone if they are suffering the same. I live in Wales so we have the joy of long wait lists and unhelpful docs. I have had a blood test last year which came back "within normal range" so being British I left it at that.as I said earlier I want to feel normal and healthy again.

Many Thanks L.

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le2333
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22 Replies
Costalita profile image
Costalita

Hi there,

Have you been taking any medication yet? Also one thing I wish I had done was keep a printed copy of all my blood results back from day 1!! I only have them for the last few years.

You are lucky in that there is an awful lot of information out there now, in 2004 there was very little for me, but the flipside is that it can be overwhelming,too!

There are some very good groups on Facebook too - pm me and I will send you some links. They post articles which are well researched.

I think the hardest thing is that, in a 10 minute slot - you have to try to describe all your symptoms without sounding like a raving loon or a hypochondriac! Trust me, I've been there!! We have all ended up in tears at one appointment or another ;)

But 12 years down the line, it is still difficult - you just have to navigate your way through and see what works for you. My GP is great - she lets me tweak my own dose completely understanding that I know best how I feel.

Good luck with everything - preparation is key when going to appointments. Someone has written an article on "what not to say to your doctor" you will find it easily and it is quite true.

Costalita profile image
Costalita in reply toCostalita

ps - if you have low ferritin (mine was 6 and I managed to get them up to 48 after a year of supplements) you will struggle to convert the T4 to T3 useable energy. They say that it really should be between 70 and 90 for optimal conversion

le2333 profile image
le2333 in reply toCostalita

Hi no Meds yet, but have start3d taking B vitamins and D3. I am on the mini pill to try and attempt to regulate my periods. I was almost in tears at the GP and had written everything down on an A4 sheet. I think the GP hot the idea that I'm not going to be fobbed off this time. I've started to read articles and have realised that how I am feeling is anything but " normal" It's just a waiting game for the blood results now.

Thanks so much for the tips and it's good to see I'm not a complete basket case!

Costalita profile image
Costalita in reply tole2333

Have a look at tyrosine then if you are not an any meds. Also selenium, kelp (iodine) and you can actually get a proper all in one supplement.

Do remember to get that printed copy of ALL your results to file away - you will be glad in years to come!

Shaws advice below is spot on with the required labs

You most certainly are not a basket case!! ;);)

Greenwall profile image
Greenwall in reply toCostalita

Hi Costalita,

Could you post the links for the articles on this forum, please? I don't do facebook.

Thanks.

Costalita profile image
Costalita in reply toGreenwall

Yes - if I am allowed - I have read the rules, but I'm not sure about posting articles etc

Costalita profile image
Costalita in reply toGreenwall

This doc has good info

restartmed.com/naturethroid/

Greenwall profile image
Greenwall in reply toCostalita

Thanks Costalita. I don't think there is a problem posting links to articles.

turrat profile image
turrat in reply toCostalita

Hi, so good to see that someone has the exact symptoms as me, other than my weight hasn't immediately shot up as no matter what I do I cannot lose weight. I eat healthily, go to the gym and walk loads but my weight doesn't alter at all in fact I'm starting to show signs of swelling in feet, calves, tights and stomach/ribcage.

I had thyroid test a few years ago which came back as 'normal' but I'm considering going back to see if they'll retest me. My mother has just been diagnosed which is where I was alerted that my symptoms match everything for underactive thyroid. The only thing I'm confused about is the auto-immune issue causing it, my immune system is extremely low, as my blood tests have always come back showing this so surely it wouldn't attack my thyroid?

Hope you have some success with your doctors. Thanks again for posting as it's reassured me i'm not alone.

le2333 profile image
le2333 in reply toturrat

Hi I should have mentioned I eat a predominantly vege diet bit do eat fish and chicken occasionally I also walk my daft dog but am starting to struggle with that. I have a step tracker and do an average of 11000 steps a day this includes work lucky I'm not desk bound otherwise I think my weight would be higher. I think that the feeling of feeling like the only person who feels like this is what drove me to post on this site. I don't have facebook as I found it really didn't help with anxiety and depression.

shaws profile image
shawsAdministrator

Ask for a new appointment and for a Full Thyroid Function Test - that is TSH, T4, T3, Free T4 and Free T3. Thyroid antibodies, and also B12, Vit D, iron, ferritin and folate. Say you want an MOT as you've been feeling awful.

Tick the symptom list below for hypothyroidism. If you have antibodies you have an Autoimmune Thyroid Disease called Hashimotos.

The blood test should be at the very earliest possible and fast although you can drink water. If you already take thyroid hormones allow about 24 hours between your last dose and the test and take it afterwards.

The above procedure allows your TSH to be at its highest as that's all the doctors take notice of.

Always get a print-out with the ranges for your own records and you can post if you have a query.

thyroiduk.org.uk/tuk/about_...

le2333 profile image
le2333 in reply toshaws

OMG I can tick almost all of those boxes! Jez I wish I had found this site 1st. I recognise some of the tests from the list apart from the thyroid which was thyroid function unknown presentation. If I get no joy I will pay for my own thyroid test!

shaws profile image
shawsAdministrator in reply tole2333

TUK have recommended labs and there is also postal tests too. this is the link.

thyroiduk.org.uk/tuk/testin...

TUK get a small commission if you quote their 'number' when ordering. It is a charity and like most, money is tight.

Before blood tests were introduced doctors knew the clinical symptoms and we would be prescribed, even on a trial basis, on our symptoms.

le2333 profile image
le2333

Thank you everyone for your comments including Costalita for the link and responding to my post. 😊

SlowDragon profile image
SlowDragonAdministrator

Kelp, (or any iodine) is NOT recommended if you have Hashimoto's as it can make it even worse

If you are having problems with your vision please get your eyes checked at the opticians especially your visual fields. You say that you have put on a lot of weight quickly even though you eat healthily, is most of your weight round your middle & your arms & legs skinny? Are your muscles weak & you're losing some of your fitness?

There is another condition that mimics symptoms of other conditions called Cushing's, I'm hoping that you don't have this but please look it up & see if you have any of the symptoms, as a lot of what you are saying may fit into it.

le2333 profile image
le2333 in reply to

Hi most of my weight has gone on to my tummy area and boobs my legs are OK and so are my arms in comparison to my stomach. Cushing's I'm off to Google that one! Thanks so much everyone I feel like I have made more progressing in 24 hours than I have in ages.

in reply tole2333

Feel free to ask me any questions you might have. I am recovering from Cushing's x

le2333 profile image
le2333

Hi Everyone just got off the phone with the docs every single blood test has come back normal no further action. I am at a loss or is this the usual NHS CBA attitude? I am off to get a print out so will post a copy up later on this afternoon once I have the print out.

I feel absolutely devastated that not only is my bloods " normal" I have to wait until the 24th August to see the doc as I work and can't get time in the mornings to ring at 8.15am as I start work at 8am. Frustrated!!

Cariad-y-Mor profile image
Cariad-y-Mor

Hello le2333........I am very much a learner myself on this wonderful forum ( Hashimotos....) and I am definitely not a doctor but I was just wondering if , among all the blood tests your GP has ordered, has she also tested for perimenopause and diabetes ? I had already been diagnosed with an underactive thyroid and was on medication when I became perimenopausal....and in a very short period of time my body shape changed .Like you describe in your following post my weight went mainly on my stomach and boobs....I "lost" my waist !!

Just a thought .....just in case you have a combination of things going on. When you do post your blood test results I know you will get a lot of excellent advice from people on here who know so much more about thyroid than our doctors. "unhelpful docs in Wales ".....but brilliant football team . giggle giggle.

le2333 profile image
le2333

Hi everyone I have just picked up the print out of my blood tests.

Serumelectrolytes

Fc121) normal no action

Serum sodium 140mmo/L (133-146)

Serum potassium 4.2 mmol/L (3.5-5.3)

GPR calculated abbreviatedMDRD 74 ml/min/1.73m2.

Serum reactive protien level 2mmol/l <5

Serum urea level 3.5mmo/l (2.5-7.8)

Thyroid function test

Serum TSH level 0.99 (0.25-5.50)

Serum free T4 level 10 pmol/l (7.0-17.0)

Serum B12 275 ng/l (150-900

SerumFolate 15.6 ug/l >3.0

Serum ferritin 19 ( ( 15-300)

Plasma viscosity 1.53 mPa (1.50-1.72)

That's the list of tests I can't figure out what they mean and have a long wait until 24th August to see the doctor that sent me for the tests. If anyone on here understands what it means and what I should do next about them.

Many thanks

Lesley

Cariad-y-Mor profile image
Cariad-y-Mor in reply tole2333

le2333 Hi again.....I have just noticed you have posted your blood test results a couple of hours ago. As I said I am very much a learner here so can't advise re your bloods ....but I think you will get a faster response from the thyroid experts on this site if you start a new post with your blood results. ( I think that is how it works). From the bits I am learning it does look as if your B12 is low....but please be advised by others who have a better knowledge than moi! Good luck. Say Hi to Gareth Bales for me. ha-ha.

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