Confused: Hi this is my 1st post. Last week I... - Thyroid UK

Thyroid UK

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Hi this is my 1st post.

Last week I went to see my GP as I was fed up.

I walked in with the following list : no libido, tired, unable to move weight, brittle peeling nails, dry skin, snappy, angry, exhausted, dizziness. Explained to my gp I had stopped my levothyroxine as my symptoms weren't getting better. Once I stopped the tablets nothing changed. I was originally diagnosed with underactive thyroid at 10 years old. By 15 it had rectified it self. Kept yearly blood test to be sure. At 26 I was forced to the docs by family due to weight loss and my goyter being more visible my levels came back at 147. So was immediately put back on levothyroxine. Well back to today I called my gp to get my results. She was convinced at my appointment last week they would be sky high. But they are normal. I stopped the levothyroxine 4 months ago. So I've booked to see her next week to see where we go from here. As my levels are normal but I'm not myself.

Anyone else been through this


16 Replies

Do you have hashimotos ? This is where the thyroid attacks itself.

Sounds like the T4 only treatment is not working so well. Worth looking into getting a trial of some T3 as well.

Do you have any blood test results. This will help others work out what is happening.

MrsMilzy in reply to marsaday

I don't have them written down. I'm pretty sure I was told it was Hasimoto's when I was diagnosed the 1st time at 10 do will mention it next week. Thank you

Hi. You have said you are confused but I must admit your post has also confused me! I can't understand why you stopped your medication. Were you not told that we are to take medication for life? The only think likely to change is the amount we take. You say you didn't feel any different when you stopped so you probably need to take more to feel better. If your doctor does not know this you must tell him and get a blood test then take it from there. Hopefully you will soon be back on the right track and start to feel better. Sorry just retread your post see you have seen your doctor and been retested! Good!

Can you post your results please? When a doctor says normal they often mean that they are within the range but it's whereabouts in the range that is important and it sounds as though you are still under medicated. I hope your doctor got a FT3 result as that is needed to see where the problem lies. If you have a conversion problem your FT4 result could be high and your FT3 result low. Most people need that to be in the top third of the range to feel good. It also takes a while forcyour body to catch up with your results so when you get the correct dose for you it still takes time for all the symptoms to go away.

If you haven't been given your results then ask for them. We are entitled to that.

MrsMilzy in reply to silverfox7

I had been on the meds for about 3 years and I was feeling no better. I had been to my gp previously to tell her that I didn't feel right so had a blood test done then to see what my levels were. They also came back normal and my meds weren't upped. So I go to a point where I thought well what's the point in taking something that doesn't make me feel any better. So I stopped them and when the symptoms didn't go away I knew something was wrong. As a child I was told it was something I may grow out of and I did for 10 years. Not one flare up. And when it did at 26 I had no symptoms other that I had lost weight. My gp was gobsmacked by my levels and was utterly confused at the fact I didn't present with any symptoms. I can have some symptoms off the over active side too like heat intolerance as well as cold intolerance. I will ask for a copy of my blood results.

you sound like you have hashimoto's disease. T4 meds, like levo, often don't help someone with hashimoto's.

MrsMilzy in reply to faith63

Would Hasimoto's flare up after years of being dormant as such

faith63 in reply to MrsMilzy

i think you need to find out what you have. Did you recently have antibodies retested? It is autoimmune and could come and go. I have never heard of someone out growing it. I certainly would be researching working on healing your immune system. I wish i never got hashimoto's, it has ruined the last 8 years of my life..but according to functional medicine, it can be gotten rid of.

MrsMilzy in reply to faith63

All I know is she ran my thyroid levels and checked my iron levels too.

I think it was because I was 10 when I was 1st diagnosed but then my only symptom was a goyter that my mom found by us playing around. I've tried to research as much as I can but I get so confused by it all. I asked last time to be referred to a specialist. I know people say to up my levothyroxine bit wouldn't that then put too much in my body and cause me to go the other way. I was on 100mg and my symptoms didn't ease up. They were always there and sometimes really bad. I have never been fully explained it. I honestly think the NHS need to inform patients more. I feel extremely left in the dark. I down know what's real and what's not.

Joburton in reply to MrsMilzy

You're right about being left in the dark, I have learnt far more here than the nhs... the first thing I found out was that being within range does not mean 'normal' It is so, so important to get print outs of your blood test results. I had been symptomatic without diagnosis since the birth of my Son in 2004.

I was only diagnosed last September with Hashimoto's and am gradually increasing my dose of Levo in 25mcg increments. The knowledge gained from here has empowered me. I go into the GP and tell them what I need, because as far as I'm concerned it's how I feel that they should be treating, as long as the figures on paper show that I'm not overmedicated.

faith63 in reply to MrsMilzy

we have all been left in the dark, by our doctors. I am in the US and it isn't much different here. My suggestion is to go to the stopthethyroidmaddness website and start there..that's what i did. Many on here are self medicating, ordering our own labs, but mostly treating by symptom relief and all of them are using a med with t3 in it and i am using functional medicine, to get rid of my hashi's and get off meds once and for all. Google Dr. Mark Hyman on how to stop your body from attacking itself. I am off to bed now. I wish i could help more.

Heat and cold intolerance can be over and underactive I'm afraid. That doesn't help does it? xx

Jo xx

MrsMilzy in reply to Stourie

Haha no it doesn't but I'm kinda thinking nothing will atm and it'll b a case of just deal with it xx

Hi MrsMilzy, if you have Hashimoto's disease, yes, it does come and go. You can have years of being 'normal', and then it can go one way or the other - either hyper or hypo. These are what we call 'Hashi's Swings'. I've had it since I was about 8 years old, I think, but didn't have the luck to get diagnosed until I was 55! During that time, I had ups and I had downs, I was fat, I was thin. And what you might call 'moody' (if you were unkind enough!) I mean that moods varied dramatically - had bi-polar been invented when I was a teen, I'm sure I would have been diagnosed with it, but as it was...

Anyway, there are two main things to remember :

1. Your doctor - most doctors - know nothing about thyroid! And they know nothing about autoimmune. Double whammy, really! So, you have to learn as much as you can about your disease. You may even have to start self-treating if you want to get well. A lot of us have.

2. There's no such thing as 'normal' when it comes to thyroid. We're all different, and what is 'normal' for one person, is hell for the next. If your doctor says your labs are 'normal', 'fine' or 'ok', just ask for a print-out to see for yourself. It is your legal right to have one, so always ask for it. What they mean when they say 'normal' is 'in-range', which isn't at all the same thing. It's where in the range they fall that counts. I've even heard a doctor saying everything was 'normal' when it was out of range! That's how much they know about it.

So, learn as much as you can, and get your results. And, you've come to exactly the right place to do that. You can ask all the questions you like and there will - 99.9% of the time - be someone that can answer them for you. Post your lab results on here, and someone will help you understand them. There's always someone here for you. Good luck :)

MrsMilzy in reply to greygoose

Thank you so much. I will definitely be doing more research x

greygoose in reply to MrsMilzy

You're welcome. :)

If you would like advice from people here, please get the 6-test set and post results here. Those 6 critical tests are : TSH FT3 FT4 rT3 TPOAb TGAb.

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