Hi, I'm new..: Hi everyone. Totally new to this... - Thyroid UK

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Hi, I'm new..

Lynnxxx profile image
15 Replies

Hi everyone. Totally new to this forum and to Hypothyroidism.. I'm currently waiting for an appointment with an endo next week after seeing my GP many weeks ago. I'm currently really struggling physically which is really upsetting as I've always been very fit and sporty. Any tips what I need to ask for at my appointment or tips in general to cope a bit better? Thanks x

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Lynnxxx profile image
Lynnxxx
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15 Replies
greygoose profile image
greygoose

The most important tip is to get copies of your blood test results. You need to know exactly what's going on, and not be entirely reliant on your GP's opinion. GPs know next to nothing about thyroid, and have little idea how to read blood test results. So, you need to keep your own records. If you don't understand them, post them here - with the ranges - and someone will explain.

Lynnxxx profile image
Lynnxxx in reply togreygoose

Thanks, the only result the GP told me was TSH was 150 which they said was high and just refered me to endo at a hospital..but its been a long wait for an appointment! Thanks for taking the time to reply x

greygoose profile image
greygoose in reply toLynnxxx

Good lord! Didn't your GP put you on levo? That is negligent. He could easily have done that. 150 is extremely high, he shouldn't have just left you like that to wait for the endo. He'll probably get a mouthful from the endo for that! That's not what endos are for.

Lynnxxx profile image
Lynnxxx in reply togreygoose

No, Ive been back to see them and they said they didn't want to give me any medications in case it was the wrong thing to prescribe. He basically said I would just have to tough it out which I'm trying to.. but its hard!! Esp as my way to de stress has always been to exercise which I just can't cope with ATM..very frustrating!

greygoose profile image
greygoose in reply toLynnxxx

You certainly shouldn't be exercising with a TSH that high! I think you ought to make a formal complaint to the practice manager about that GP. He was very, very wrong - not to say ignorant - not to put you on levo. There's nothing else he could put you on! So, that was a lousy excuse. Normally, primary hypo is handled by GPs. If he wasn't capable of treating you, he should have suggested you see someone else in the practice who was capable - or he should have asked for help. Not just leave you to suffer like that! That is negligence.

Lynnxxx profile image
Lynnxxx in reply togreygoose

Ah well.. only just over a week to go til the hospital appointment so hopefully they will give me something to help! I'm counting on it anyway.. Thanks for the support, I don't know anyone who's had this so not sure if I was making a fuss saying how poorly I felt, I'm normally fairly hardy! You've helped just by being supportive so thanks!

greygoose profile image
greygoose in reply toLynnxxx

You're welcome. But, you certainly weren't 'just making a fuss'. You must feel terrible. But, I'm serious. Your GP should not be allowed to get away with this. It's time they were held responsible for their actions - or lack of action.

Nanaedake profile image
Nanaedake in reply toLynnxxx

What on earth reason did GP give for not starting you on treatment? Have you got a serious heart condition or some other very complicated medical history? Even so, leaving you to suffer so long is totally unacceptable. I agree with Greygoose. And I would see a different GP in the practice.

1 in 20 people in the UK have a thyroid condition so you probably do know someone but just didn't know they take Levothyroxine. It's quite common.

It would not be at all unreasonable to expect to be treated speedily. If your TSH is actually 150, that's extremely high and your GP is putting your health at risk by delaying treatment. If you suddenly feel very unwell go directly to A&E without delay.

Actually I would ring GP tomorrow, speak to a different one and say you cannot wait longer for treatment. How many weeks have you waited?

Lynnxxx profile image
Lynnxxx in reply toNanaedake

Hi Nanaedake. Thanks for the reply. No I don't have any other health problems, that I know of anyway! I first went to docs in November last year but just saw a practice nurse who said I probably had a virus. I went back when feeling really bad and the had the blood test about 7/8weeks ago. Ive never actually seen any results, that number is just what I was told over the phone. X

Hashi-Monster profile image
Hashi-Monster in reply toLynnxxx

I would at least ring the GP today and get the exact results, it’s within your rights to have a printout of your results.

If your TSH is 150 then that is extremely high and you need to insist on treatment now.

Nanaedake profile image
Nanaedake in reply toLynnxxx

In that case, if you have no other health condition and you've been ill for so long your GP practice is negligent. If it were me I would ring them today and ask why you've been left to suffer since last November and that waiting another week is not acceptable. Go to A&E if GP will not help and if you feel very unwell and tell them you've been waiting for help since last November for very high TSH. You should not have to suffer for this long.

Your GP can start you on treatment.

StillEverHopeful profile image
StillEverHopeful

As other have said get a print out of your results. (There are rules that say you are allowed them) Once you get them post the results - there are some amazing folk here that can help you understand them.

a TSH of 150 seems very high and GP should be acting on it now not making you wait until you see an endo next week.

Hope you get help before next week.

Rennixon profile image
Rennixon

Hi Lynn and welcome to the forum.

First of all - we’ve all been in your situation-feeling unwell and not being able to understand what is wrong. You sound like you feel rotten & you will be. But there is help here, knowledgeable people who can help. There are different things you can take to help with hypothyroidism & you can learn about them on here.

It’s perfectly normal for you to trust your GP and wait for the Endo appointment. I have no idea how long you’ve been with the practice, but we all put our trust in the ones who should know-right?

Unfortunately in the current educational system a GP gets a VERY limited lesson about thyroid problems. Some do learn more but the vast majority are clueless. Yours definitely is and should not have left you without any medication at all!

I can only hope the Endo you’re going to see is more knowledgeable and will give you the treatment you need. He/she may ask for more tests, so be prepared for this.

GP records: You have a right to your records(bylaw) and should ask for a printout at reception-they should not question it! If your practice has an online facility-join and ask for access to your records and test results (all practices should offer this but some are still in the dark ages) .

post your results on here with ranges and you will get help. (If your confused by this look at anyone’s profile and look at their posts) There’s lots of things to consider & when you’re really ill you will need help.

Do join thyroiduk.org/index.html

I suspect you’ve already looked here but it’s a good place to start and there’s a lot of information to take in.

Good luck and do tell us what happens x

eeng profile image
eeng

If your TSH really is 150 you are almost certainly feeling quite low - depression is a symptom of hypothyroidism and won't be helped by antidepressants. It does sound as though your thyroid has suddenly stopped working - have you had any neck injury?

Lynnxxx profile image
Lynnxxx

Thank you to everyone for your support!! I guess some of the problem with the gp is me trying to be too tough about it.. I never normally go to a doctor for anything! Yes been very down.. Mostly about how weak im getting.. With the right treatment do most people feel able to get back to their previous level of fitness quite quickly??

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