Thyroid UK

Please can someone help me understand?

Please can someone help me understand?

I'll try not to ramble on so much but I am quite new to the thyroid community and have no clue, but I've had a blood test on 18th November 2017 (results posted in previous posts) and again on the 27th December 2017 (results posted). I am not yet medicated I will be seeing a endo in February the GP wanted to check if my thyroid has gotten worse.

We've also done some vitamins and it's been established that my vitamin D is extremely low but this has now been treated. My GP says that my results have completed "flipped round" (whatever this means) but she is please with my results. Could anyone please explain? I'm such a worrier. Would this mean my results are not accurate and maybe the 3rd time my results will flip again?

To give you a bit of inside information as well, I currently don't feel bad at all and not affected by these thyroid problems. I do feel anxious now and again but I think this is normal for me.

Thank you in advance

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Anti thyroid peroxidase >600 <34.00

Serum free t4 level satisfied 24 12.00-22.00

Serum tsh level 0.16 0.27-420

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Old test results if it isn't clear please look at previous posts

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You have Hashimotos on the old results your low and need medication and on the new your results look ok but your antibodies say you have Hashimotos so your results can swing all over the place, you will need some medication to hopefully stop the damage

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Not medication, thyroid hormone replacement, to replace the hormones your already damaged thyroid can no-longer make. Taking thyroid hormone replacement - levo, NDT, T3 - is not going to cure the Hashi's, nothing can do that. But it will bring levels of FT4 and FT3 up, and reduce symptoms. :)

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That's what I meant not explained in medical terms, but I did read on here somewhere if you can illuminate triggers it can stop the damage but Levo/ndt is still needed in most cases

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First, you have to identify the triggers. Do you have any idea how you do that? Levo is not going eliminate triggers.

Yes, levo will still be needed because you cannot repair the damage already done to the thyroid, and by the time most people get diagnosed, considerable damage has already been done.

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So I don't see the endo until February and the gp has decided not to medicate me. Am I at risk of a thyroid storm?

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And am I still able to go to the gym as normal?

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That very much depends on how you feel when you go to the gym. If it takes three days to recover, then no, you can go to the gym as normal. You need to ease up a bit until your T3 levels are higher.

If it doesn't have any effect on you, then carry on. But, remember, going to the gym uses up your T3 rather fast, and there might come a day when you can't do it, because levels with Hashi's fluctuate. Just don't push yourself over you limits, that's all.

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Ok so basically I can if I don't take ages to recover and don't push myself over limits? Ok got it, sorry this sounds silly again but what does it mean if going to the gym uses up my T3 faster?

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Everything you do uses up T3. It's your source of energy. Excessive exercise uses it up faster, and leaves nothing for the rest of your life activities - digestion, circulation of blood, brain function, going to the shops, mowing the grass, everything - and so you pass the next three days flopped out while your body frantically tries to replace all that T3 you've used up.

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No, you are underactive with hashimotos (aka autoimmune thyroiditis) thyroid storm is what hyper people get and even a hashis flare tends not to cause it as it is self limiting as the thyroid is destroyed a bit more after each attack.

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Yes actually I do have an idea! I did an illumination diet auto immune paleo diet! My triggers are yeast, gluten, tap water and cows milk. I didn't say in my last comment it would repair it I said avoiding triggers has been known to stop damage if caught early I didn't have symptoms I was borderline when I was diagnosed

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Would you say I'm also borderline as well?

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No I think my TSH was about 3.5 if I remember right! It was 14 years ago, lol

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Oh I'm not sure why my GP says my TSH is just borderline then if mine is double :(

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They have different numbers to work from in different GP practices and areas I think

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Because your GP doesn't know much about the thyroid. There's about one session on it in 5 years of uni. Most healthy people have a TSH around 1.2

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Yes, ok, but I'm not really sure what you're saying here. What happens when you avoid yeast, gluten, etc.? Are you saying that you no-longer have Hashi's?

A TSH of over 3 is not borderline, despite what doctors think. It is hypo. And, a lot of people will have terrible symptoms with a TSH of 2.5 even. It's not because your TSH was 'only' 3.5 that you didn't have symptoms. Actually, you could have had symptoms without even realising they were symptoms, because there are over 300 symptoms, and not all as drastic as losing your hair or putting on weight. :)

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Anxiety is a classic symptom of Hashimoto's.

thyroiduk.org/tuk/about_the...

So are you on any Levothyroxine at all yet?

TSH is above range at 6.5

GP should have prescribed standard starter dose of 50mcg.bloods retested 6-8 weeks after each dose increase until TSH is around one and FT4 towards top of range (currently FT4 is near bottom of range)

your vitamin D is currently far too low. It's only 26nmol

That is deficient (under 30nmol) and needs loading dose. Looking to bring up to around 100nmol

Hashimoto's often causes low vitamin D.

Folate, ferritin and B12 are OK at the moment, but may go lower if you are not on Levothyroxine yet.

See detailed supplements advice in this post with Low vitamins

healthunlocked.com/thyroidu...

Many of us with Hashimoto's find changing to gluten free diet helps reduce symptoms

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

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Hi I am not medicated yet I don't see a endo till February unfortunately, but my GP has given me tablets to take for my vitamin D levels. Is it going to cause much damage waiting till February? And the GP has said I am only borderline is she right?

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Hashimoto's is normally managed by a GP, unless people react badly to Levothyroxine. You haven't even been started on Levothyroxine so it's unusual.

Obviously February isn't long. But a standard case of Hashimoto's is not usually passed to an endocrinologist.

Getting your vitamin D sorted is a step in right direction.

You might consider changing to strictly gluten free diet while you wait

Reading up about Hashimoto's and leaky gut

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Okay Slowdragon, if hashimoto's which I'm assuming I have is what I got how is it my GP has referred me to the endocrinologist? Or maybe she doesn't know how to deal with hashimoto's? As I've never heard her speak of that word before. Or would it be the case as the blood test I've had recently and a few months ago has completely as she said "flipped"? Turning me hyper to hypo?

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Your comment has me feeling a little worried as you said a standard case of hashi's would not usually passed to an endo which indicates to me that something may be wrong?

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No you're not unusual

many GP's just find it a confusing illness because our blood tests hop about a lot, especially to begin with.

90% of people on levothyroxine have Hashimotos (UK medics tend to call it autoimmune thyroid)

There's over 2 million people in UK on Levothyroxine. The vast majority get on fine. You won't find them on a thyroid forum. They are getting on with their lives.

Remember having Hashimoto's tends to make us anxious. It's a very very common symptom. Its great when that fades once treatment kicks in.

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Ok thank you so much for your reassurance x

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She doesn't understand how to deal with it and doesn't know that a Hashi flare releases thyroid hormone into the bloodstream on a temporary basis giving high free T4 and T3 for a short period before becoming more hypo. She doesn't believe you are hypo - she thinks you have some weird type of over active thyroid that keeps changing. If she was a man her name would be Dick!

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I wish there was more than a like button here. lol xx

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I'm saying I don't have a lot of my symptoms when I avoid these, like leaky gut, bloating, indegestion, stomach cramps, brain fog, constipation, I know there is over 300 symptoms I've probably had most of them. I was diagnosed with no symptoms at allthen 9 months later when I got pregnant and then started with lots of symptoms, most of all you couldn't see my eyes I swelled up so much. I'm not saying I don't have hashi's anymore the doc told me my I had no hashi antibodies I was negative, and I don't know how it could be negative he told me my thyroid was dead

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You’re not rambling at all. :) I’m not surprised you’re not sure what to think, with your doctor deferring a decision about what actually looks like a straightforward case of autoimmune thyroiditis (otherwise known as Hashimoto’s).

You have positive antibodies (the majority of people who develop hypothyroid problems will eventually have positive antibodies) which indicate that over time, your thyroid will slowly - emphasis on slowly! - struggle to keep up with your thyroid hormone requirements. It’s really quite common and nothing to worry too much about because it can be treated. However, many doctors like to take a “wait and see” approach, believing that if they jump in too soon and start prescribing levothyroxine that they’ll speed things up. That’s actually not true - there’s research which suggests that putting someone in levothyroxine actually slows down the damage to the thyroid caused by autoimmune thyroiditis.

It is a bit surprising that your doctor hasn’t started you on levothyroxine, because many of your symptoms, including your anxiety, are probably being caused by you needing thyroid hormone replacement. But commonly, doctors don’t know a great deal about thyroid conditions, getting something like half an hour of training on the thyroid during medical school. So they don’t always understand the full benefits of prescribing enough levothyroxine (if you’ve read posts here at all you’ll be familiar with what I mean!). It’s not their fault but the more we as patients know about the condition, the better the outcome for us.

It won’t do any harm for you to wait until you see the endocrinologist, so don’t worry about that - February’s not too far away now - but when you do see him/her I’d suggest that you’ve taken advice from Thyroid UK (the charity to which this forum belongs - and importantly, a website recommended by NHS Choices!) and that you’d really like to start taking levothyroxine because you’ve had enough of feeling awful, especially as you’re only in your early 20s. The endo, depending on how good he/she is, may start you in 25mcg levo. If that’s the case, know that 25mcg and also 50mcg of levo are starter doses and you will need a dose increase after 6-8 weeks. Knowing that will put you ahead of countless other thyroid patients who are needlessly left on too little levothyroxine for years and wonder why they never feel any better!

Ok. Vitamin D - you say that’s been sorted? *How* has it been sorted - were you given big doses? What were you prescribed? You may be interested to know that low Vitamin D is well known to cause low mood - everyone thinks it’s about healthy bones but that’s only part of the story. So getting that fixed should make you feel lots better.

I always say that one of the key signs of having hypothyroidism is paranoia - or you could even call it “health anxiety”. :) So getting on to levothyroxine could well be the key to you feeling lots better - don’t be scared.

Keep posting here, keep reading around the topic so that you know lots about hypothyroidism. Don’t let your doctor say things about you self-diagnosing using the internet or anything rude like that. Most of us here who’ve regained our health have done it because we *did* go looking for answers other than relying solely on what our doctors said - and this forum is a brilliant place to find good solutions to persistent thyroid problems. :)

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I'm also taking a medication for plenachol and it says it's 40 000 IU capsules. I take this once a week for 7 weeks but I'm not too sure what happens after

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You get another vit D test (or buy one yourself for < 30) and change to a maintenance dose of vit D or continue on a high dose as needed. You should also be taking vit K2 to make sure that the extra calcium being absorbed goes into your bones not your arteries

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Hi jazzw I cant tag you for some reason but I have replied below xx

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Thank you for explaining to me so clearly once again Jazzw. I feel like my doctor has dumped me and left it all to the endo because every question I ask she tells me to ask my endo or maybe she just doesn't want to give me the wrong information as I've heard a lot of doctors don't know much about hashimoto's. I haven't even heard my doctor say anything about hashimoto's yet.

So what do you think I should say to my endo? That people on this thyroid UK forum advise it's the best to start levothyroxine? Except for anxiety I don't really get any other symptoms. When I start levothyroxine will I get awful side effects? And most importantly from now till February since I'm not medicated am I near dangerous levels of developing thyroid storm?

I'm not even sure if I'm feeling "normal" now or have I just accepted that this is what "normal" is for me.. as if I'm use to it and just deal with it. I really do wonder if Levo will make a difference with how I feel especially when I compare myself to the other users most describe their days unbearable which isn't anywhere like mine at all.

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Nothing much is going to change in the few weeks till you see your endo. xx

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Your GP is not clever to be pleased with those results, I think. How can over range TSH be "satisfactory for patient"? Saying things like "flipped around" is either patronising or clueless - hard to say which. Flipped from what to what? You need a dose increase as your Free T4 is low in range and your TSH is over range. Your folate is also not OK and should be half way through range.

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I really don't know why I'm getting upset and anxious over this. I was completely fine a few days ago now that the results come back I feel like I am ill and I'm making myself FEEL ill. I feel like nothing can help me I see so many people on the forum who are medicated but still feel like crap and I feel like that's going to me.. I was like that when I was on anxiety medication.

It's the new year and I signed up to a 24 hours gym because I felt so good now and I wanted to change myself now I found out I shouldn't really go gym and also I've got this thyroid problem to deal with possibly for life and I'm only 22

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You can go to the gym if you enjoy it - just don't overdo it.

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