Needing urgent help !: Hi my name's Michael I am... - Thyroid UK

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Needing urgent help !

Michaelg193
Michaelg193
48 Replies

Hi my name's Michael I am 25 i was diagnosed with hypothyroidism (underactive) around a year and a half ago.

My trouble is every time I take my levothyroxine I feel seriously unwell so has now resulted in me not taking my medication .

To clarify when I take my levothyroxine I experience no sleep heart palpitations dizziness feeling like in falling sweatyness chest pains arm pain heart pounding tingling in my hands and feet burning in my face and extreme mental health impacts!

I recently attended hospital for my chest pains where they stated my thyroid levels where high ? I sat there confused wondering what was going on as I haven't been on any medication !

My gp has had several complaints due to the treatment of there clients I am just really worried don't know what to do ?

Do I have a underactive thyroid or does this sound like a hyperactive thyroid .

At my wits end just feel like my body is giving up.

48 Replies
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Fruitandnutcase

Not surprised you are feeling awful.

It would help people to give advice if you could post all of your blood test results on here along with their lab ranges..

Whatever you do though, don’t give up, you will get there in the end.

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Michaelg193

Apologies I do not have any as my gp won't provide me with any details (really bad go practice) just really needing the advice on the best thing to do in this situation as I'm currently feeling awful with these chest and arm pains feels like how I would imagine a heart attack to be like. Thank you for responding

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bantam12

Which brand and what dose did you start on, how long did you take it for and how long have you been off Levo ?

Your GP cannot refuse to give you your results, it is your legal right to have them.

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Fruitandnutcase

If you are having chest and arm pains you should go back to A&E again and hopefully they will be able to help you. Tell them what has happened since you saw them last and how you feel ill when you take your levothyroxine. Perhaps you’re u are not taking enough levothyroxine.

Hopefully they will refer you to an endocrinologist. Ask them what your blood test results are while you are there.

If you live n the U.K. you are legally entitled to have a copy of your results.

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Michaelg193

Thank you I might actually do that it's always better being safe than sorry I reckon

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shaws
shawsAdministrator
in reply to Michaelg193

It is against the LAW for a doctor to refuse to give you a print-out of your results. Always ask for a print-out of your results and the ranges (figures are in brackets) every time you have a blood test for your own records. Some surgeries take a nominal sum for paper/ink but mine doesn't charge.

This is the procedure you have to follow when having a blood test:-

Always make the earliest possible appointment - fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. The aim is a TSH of 1 or lower - not higher as many doctors think up to 5 is fine.

Ask GP to test B12, Vit D, iron, ferritin and folate as everything has to be optimal.

If you read questions/answers on the forum you will soon pick up tips of how best to recover your health.

You need a Full Thyroid Function Test (rarely taken by doctors) but there are private labs that do home finger pin-prick tests so make sure hands/arms are warm so that blood flows freely and that you are well-hydrated a couple of days before.

T4 - levothyroxine - is an inactive hormone and it is supposed to convert into T3 - liothyronine - and it is T3 which is the active thyroid hormone and heart/brain have the most T3 receptor cells.

It is scary when we take prescription hormones and find we feel worse than before we were diagnosed. We can get well and read questions/answers and you will soon pick up how best to recover your health.

A Full Thyroid Function Test - rarely taken - is:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The aim, once diagnosed and given levothyroxine (T4) is to have a blood test every six weeks with a rise in T4 until TSH is 1 or lower (not somewher in the range as many doctors seem to believe). FT4 and FT3 should be in the upper part of the ranges.

Vitamins/minerals have to be optimal too. If B12 is low, you would have to get a special test to exclude pernicious anaemia or a B12 deficiency. Vitamin D and B12 are actually pro-hormones and are very necessary to be optimal.

We have to read, learn and we will recover our health as the majority of doctors appear to know little except to keep the TSH somewhere in the range and do not increase dose.

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Michaelg193
Michaelg193
in reply to shaws

Doctor started me on 125mg of levothyroxine sodium tablets and also 5mg of folic acid tablets took that dose for around 5/6 months with constant pain the entire time

Past 6/7 months medication free with these types of symptoms

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Michaelg193

Thank you for your advice

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Mumoffour4

I don’t know your results but a starting dose is 50mcg of levo thyroxine with blood test every six weeks to check your levels and make sure you are in the right dosage!! My advice would be to find a different gp ASAP!! You are fully entitled to your test results after all it your property! You can visit any GP surgery you just need to fill out a form! Wishing you the very best of luck!

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Michaelg193

Thank you for your respose i think a different gp is a must right now to be honest

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greygoose

Not surprising you didn't do well, then. Your starting dose was much to high. It would have been a terrible shock to your system, and could explain why they said at the hospital that your thyroid levels were high - although one can never be quite sure what they mean by that.

Don't ask your doctor for your results - he would probably prefer you didn't have them. Ask at reception for them to print them out for you. The law says they are obliged to. If not, you can take measure to force them to do so, and I'm sure they wouldn't like that unpleasantness. :)

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Michaelg193

They stated at the hospital my levels where high after 6/7 months of not being on my thyroid medication which is why I'm soo curious if I have been misdiagnosed .. I definetly need to get a print out of my levels

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greygoose

Ah, OK. I hadn't understood that. In that case, it's likely that you have Hashi's. You need your TPO antibodies tested. Your doctor may have already done that, but I doubt it, by the sound of him. He doesn't sound as if he knows what he's doing! It is possible to get private tests done, if your doctor hasn't done all the right ones.

But, that huge starter dose is more than likely why you didn't get on with levo. That's just insane!

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Michaelg193

If you think that is crazy I went to my gp the other day and told him about how I have been feeling he increased my dose to 175mg of levothyroxine ! But I am refusing to take any more medication untill I can get the proper help .. I have never had any scans done no additional tests nothing just that first initial blood test and a prescription for pills

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greygoose

Doesn't surprise me. He really has no idea what he's doing. He's dangerous.

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Michaelg193

I 100% agree

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Hidden
Hidden
in reply to greygoose

Could it be the 1.6mcg/kg starting dose?

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Michaelg193
Michaelg193
in reply to Hidden

125mcg apologies that was starting dose now been upped to 175mcg without bloods being checked etc

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Hidden
Hidden
in reply to Michaelg193

If you know your weight in kg you could figure out if they are basing that on your weight. Eg if your weight was about 80kg (=about 12 stone) then 125mcg might be a starting dose...

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Michaelg193
Michaelg193
in reply to Hidden

I'm around 9 stone so 50 kg and loosing weight

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Hidden
Hidden
in reply to Michaelg193

Maybe not then 😊

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Michaelg193
Michaelg193
in reply to Hidden

Haha I really need to get my levels checked and a printout I'm just worried I've been misdiagnosed

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Hidden
Hidden
in reply to Michaelg193

Good idea

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MaisieGray

If you have a hypothyroid diagnosis, but not taking your Levothyroxine (definitely not a good idea as your heart, brain, bones, and just about everything needs a sufficiency of thyroid hormones) then the only 'thyroid' test result that should be high, is your TSH - which in fact, is a pituitary hormone and not a thyroid hormone. However, if you have Hashimoto's, the autoimmune cause of the majority of cases of hypothyroidism, you might be in a "flare up" and as a result of the damage being done to the thyroid, the damaged cells might be releasing their thyroid hormone into the blood and therefore your thyroid hormone levels will be high - but not because your thyroid is overproducing its hormones as would be the case with hyperthyroidism. So as you can see, two opposing guesses at what those high results might refer to, and in order to help you understand what might be happening right now, it is crucial that you know exactly what are your results and their reference ranges, as has been said. Your surgery MUST release copies of your test results to you in all but very exceptional situations, such as if you were intellectually impaired for instance; they cannot refuse. Neither can they make any charge to you for printing off the results. Without this information it's not possible to do anything but guess what might be going on with your health. The relevant legislation is the Data Protection Act 2018 and the associated EU General Data Protection Regulation of the same year. I'm afraid you will have to make a stand to ensure you get the information you need, but if they continue to obstruct you, you should remind them that there are substantial financial penalties that can be imposed upon them, not to mention you reporting them to the CCG.

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Michaelg193

Thank you I am going to get straight to my gp to put in a complaint and to get my results as this is too much to handle at the moment

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MaisieGray

It's perhaps best to ask the receptionist to print off copies for you, rather than see the GP, they should be familiar with what are called "subject access requests" ie asking to see the data held about you. By the way, don't stand for any nonsense about putting your request in writing - a request can be in the form you chose ie verbal if that's how you want to make the request. Have a quick read of this link to the Information Commissioner website:

ico.org.uk/your-data-matter...

Also, since 2015 all GP surgeries should have set up online access for patients to access their health records on line, to cut out this nonsense, although not all have done. Once you've got your tests results sorted, you can ask to be given this online access if you'd prefer to be able to keep yourself informed by the online route. It's often referred to as Patient Access although that is only one of the providers you can opt for - my surgery has a choice of 9 or 10 for instance. Sometimes you are given basic access to start with and then you have to ask specifically for higher level access, so be prepared to jump through another hoop and provide proof of identity etc even if they've known you for years ....

nhs.uk/using-the-nhs/nhs-se...

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Michaelg193

That's really handy to know thank you!

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MaisieGray

You're welcome. Do let us know how you get on. 🙂

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Michaelg193

I will be sure to upload my findings this is my new favourite place thank you

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Michaelg193

To clarify a little I'm experiencing symptoms such as heart racing etc even when I've been off my thyroxine but thank you to everyone who has helped me out put me at ease a little I definetly need to get my levels to see what everyone thinks thanks again

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Girlslovescifi

I’m no doctor, but i know from experience that adrenal imbalance from long-term stress can give you racing heart, insomnia, tingling, sweats, etc. My symptoms were caused by my cortisol being way too high. I’m also hypo and it’s hard figuring out what’s causing the problem. Good luck!

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Michaelg193

It's a constant headache ! Change of doctors I think will help massively

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Girlslovescifi

Definitely! If you ever want to have an accurate adrenal test, saliva tests are the way to go, but they don’t do them on the NHS. I ordered a kit online. I remember showing my results to my endo and he just looked at them and said nothing. 🤷🏼‍♀️

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Michaelg193

Think I just need a full body check over to be fair haha doctors where I am really just want patients in and out all frustrating

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Girlslovescifi

I had to change my GP. Took ages before he’d test my thyroid.Kept giving me mental health questionnaires. Eventually I annoyed him enough and I was tested. Of course I was hypo. Put me on 25 or 50mcg levo and left me there with no testing for 18 months. Kept asking to see an endo and was told there was no clinical need. Paid to see him privately and he knew almost as soon as he met me that I was on far too low a dose. Cold hands, dry skin, slow heartbeat, no reflexes, etc. Changed surgeries and am much happier.

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Michaelg193

I was started on a dose of 125mg which was way too much for me my body felt horrible now I don't take any and I'm getting rapid heartbeat sweaty hands etc etc visited the doc told him what has been happening he increased my dose to 175mg without a blood test and knowing I'm not taking the medication it's crazy

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Girlslovescifi

He sounds like he hasn’t a clue!

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Michaelg193

I'm just concerned that the hospital stated my thyroid was high when I have not been taking any meds atall ... didn't even think to ask what was high which levels etc

Am now just concerned has my doctor misdiagnosed and been effectively trying to overdose me on thyroxine as he clearly doesn't have a shred of clue what's going on

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Girlslovescifi

As others have said, get yourself to another GP asap!

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Michaelg193

Thanks for your help

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lisabax
lisabax
in reply to Michaelg193

Michaelg193- you’ve had a lot of responses all with good advice. All I was going to add is that if you’re up to it you can get a thyroid fingerprick test kit from Medichecks. You should have the results within a couple of days of sending it off. It’s not expensive. Details on thyroid UK website. Then you can post the results on this forum which will help people to give their views. Your symptoms must be very frightening. I wish you well

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Michaelg193
Michaelg193
in reply to lisabax

That's great i will check this out thanks very much !

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humanbean

Any doctor saying your thyroid is high is being too vague to make any sense.

When people are hypothyroid they usually have the following results :

TSH is high

Free T4 is low

Free T3 is low

When people are hyperthyroid they usually have the following results :

TSH is extremely low

Free T4 is high

Free T3 is high

So when a doctor says your thyroid is high are they referring to your TSH or one or both of your Free T4 or Free T3? They rarely make it clear.

There is another possibility...

Someone who has Hashimoto's Thyroiditis (also known as autoimmune thyroid disease by doctors in the UK, also known as Hashi's by patients) will have results which fluctuate, apparently from hyperthyroid to hypothyroid to hyperthyroid to hypothyroid over and over again.

However, in Hashi's the cause of the recurring high levels of Free T4 and/or Free T3 is not the same as the cause of high Free T4 and/or Free T3 in true hyperthyroidism. People with Hashi's will eventually become permanently hypothyroid. Those with true hyperthyroidism are unlikely to become hypothyroid.

The high levels of Free T4 and/or Free T3 in people with Hashi's rarely become as high as the levels in true hyperthyroidism.

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Michaelg193

I really need to get a copy of my levels so I myself am more clear about what's going on with my body

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humanbean

I'm getting rapid heartbeat

There are lots of causes of rapid heartbeat (tachycardia) and this list is not complete. Also be aware that there are several different kinds of tachycardia.

1) Too high or too low levels of sodium (salt) or potassium

2) Low iron and/or ferritin

3) Low magnesium

4) Anaemia

5) Eating a high sugar diet

6) Too much caffeine

7) Some medications - always check the Patient Information Leaflet

8) You could be producing too much adrenaline and/or cortisol

9) Hyperthyroidism

10) Hypothyroidism

curejoy.com/content/causes-...

Although doctors are familiar with hyperthyroidism producing a fast heart rate it seems few of them know that hypothyroidism can also cause tachycardia.

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Michaelg193

I seriously need to get myself checked out by a proper gp

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mstp

I think perhaps you should report your GP. It doesnt sound as if he is a properly trained medical doctor to me. You do occasionally hearing of frauds.

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Michaelg193
Michaelg193
in reply to mstp

Yes that's what I'm worried about new doctor practice is on the cards for me as I'm terrified I've been misdiagnosed

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