My overactive thyroid 😥

[Flower1703]

Please can someone give me some information about over active thyroid Iwent to the doctors about heart racing, palpitations fatigue, pain in my knees and weight loss they said I have hyperthyroidism they didn't explain much to me about it just said I would have to wait for appoitment of the hospital so any info would be great. Thanks

[SlowDragon Administrator]

That’s ludicrous

Have you had any blood tests done?

If yes, please add results

If not.......Make another appointment with a different GP

GP should do full thyroid tests NOW

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Plus TSI or Trab antibodies for possible hyperthyroidism

Low vitamin levels are extremely common when hypothyroid or hyperthyroid so ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning. This gives highest TSH, lowest FT4 and most consistent results.

Almost all thyroid disease is autoimmune

Most common is autoimmune hypothyroid (often called Hashimoto’s.) Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

So it’s important not to get the two confused by testing thoroughly

Autoimmune hyperthyroid is called Graves’ disease

To confirm Graves Disease it’s important to get TSI or Trab antibodies tested ....Ask GP to do so

Private TSI or Trab antibodies test

medichecks.com/products/tsh...

Good info on Graves’ disease

ncbi.nlm.nih.gov/pmc/articl...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). But can also be high as well with Graves’ disease

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Wether you have early stage Hashimoto’s or Graves’ disease needs confirming by blood testing via GP now

Important to also test vitamin D, folate, ferritin and B12 too

[Flower1703 in reply to SlowDragon]

On the 13th I had thyroid blood tests vitd ect the doctor rang me back 5 days later and told me that me that I have overactive thyroid so they subscribed me folic acid and beta blockers but a week after that mybsymptoms had got much worse with servere tiredness heart palpitations and then they prescribed me thionamide but told me to stop them yesterday as my symptoms are getting worse the doctor told me that my thyroid levels are really high. I have just rang the doctors for my results and the receptionist can't see them and to wait until the doctor rings me on Monday.

[Flower1703 in reply to SlowDragon]

I also forgot to say that I have gone from 12 stone to 8 stone in 2 months

[greygoose]

Over-active thyroid is when your thyroid is making too much thyroid hormone, which can cause all sorts of nasty symptoms.

The most important thing is to know why your thyroid is doing that. Unfortunately, GPs don't know enough about thyroid to find out why, so that's why they're sending you to see an endocrinologist at the hospital.

However, to know that you have an over-active thyroid, your GP must have done some blood tests. I don't suppose he told you the results - they rarely do - but it is your legal right to know. So, your first step to wellness should be to contact the receptionist at the surgery, and as for a print-out of your results - as I said it is your legal right to have one, so if they refuse they are breaking the law.

Once you get those results, post them on here (new thread) and give us the results and the ranges (numbers probably in brackets after the results). Then we can explain them to you and answer your questions. Without know why your thyroid is over-active, there's not a lot more we can tell you, I'm afraid - unless you have a specific question?

[Flower1703 in reply to greygoose]

I just rang my doctors the receptionist told me they can't see them

[greygoose in reply to Flower1703]

Can't see them where? On the computer? Your doctor did do blood tests, didn't he, before stating that you had an over-active thyroid?

[greygoose in reply to greygoose]

OK, just read your reply to SlowDragon. They don't sound very well organised, do they! Let us know as soon as you hear anything. But, don't let your doctor fob you off! You want a print out of your results so that you know exactly what tests they've done, and exactly what the results are. Doctors are always very good at interpreting blood test results, and you need to keep your own records.

[Flower1703 in reply to greygoose]

I received this letter this morning so I really hope they can do something for me pretty quick 🤞

Photo

[Flower1703 in reply to greygoose]

They told me that all they can see is that the doctor has requested a repeat blood test

[Flower1703 in reply to Flower1703]

And yes they done everything the doctor rang me and told me I have overactive thyroid,low on vitd and they gave me folic acid

[greygoose in reply to Flower1703]

Well, I very much doubt they've done everything. If they had, they would have been able to give you more information.

But, if your vit D is low, why did they prescribe folic acid? That won't raise vit D.

[Flower1703 in reply to greygoose]

They subscribed me vitamin d and also folic acid but I dunno what for

[greygoose in reply to Flower1703]

I would imagine they prescribed folic acid because your folate is also low. But, you really, really do need to get your hands on those results and ranges! If your folate (B9) is low, your B12 could also be low. But, if it's anywhere within the range, your doctor will think it's 'fine'.

[greygoose in reply to Flower1703]

When is the repeat blood test? Or is it down to you to make the appointment? If so, make sure it's early morning - before 9 am.

[Flower1703 in reply to greygoose]

Monday

[SlowDragon Administrator in reply to Flower1703]

Make sure you get copies of the actual results and ranges on all tests

Come back with new post once you get results

[PurpleNails Administrator]

Did the GP request this blood test or was it done by the hospital? For example, after an emergency admission? Sometimes GP staff do not have access to hospital ordered records and they are sent / or stored on a different system. Otherwise there’s no excuse they are not available at practice. Once the doctor has viewed them they can be given to you, and as you’ve already heard back from the GP and given diagnosis & medication that has happened.

Find out if your practice offers online access, many do not u fortunately, but if they do arrange access as soon as possible. It can’t take time to set up, and a few steps to arrange full access.

What anti thyroid, beta blocker were you prescribed & what doses? You said the symptoms were not improving so they stopped the medication? Both the medication or just 1. They didn’t recheck your levels? Its not expected to work quickly, it can take several weeks until you feel better, so it’s not usual to stop early on because it’s not resolving yet.

Usually the GP should consult with the specialist who advises the dose of the anti thyroid? Was this done?

The letter is worrying, as it basically a “holding letter” they haven’t arranged any for you other than agree you need to be seen. They also state to refer back to your GP.

You may find the GP will just say everything is now up to the specialist but that’s not good enough. Be prepared to be persistent & explain your symptoms, reminding them it can be dangerous to have high thyroid levels untreated. Arranging a full test should be done as quickly as possible.

[Flower1703 in reply to PurpleNails]

My blood test were done by my gp as I was having heart palpitations fatigue an enlarged goiter which I've had for over 5 years and missed periods for 3 months so they done some blood work for thyroid, hormones, vitamin d ect. Doctor then rang me said I need vitamin d, folic acid and propranolol, 1 week later thiamine then stopped 1 week later as they were making me sick so trying another thyroid medication this Monday.

[Flower1703 in reply to PurpleNails]

And they only stopped the thiamine

[PurpleNails Administrator in reply to Flower1703]

Were you prescribed thiamine or a thionamide?

thiamine is a B vitamin, thionamide is a group of medications which inhibit the production of thyroid (or anti-thyroid). The two used in UK are carbimazole or Propylthiouracil (PTU).

Propranolol will help relieve symptoms but will not improve high thyroid levels. It would take more than a week for either anti thyroid to improve symptoms.

I am surprised that if the medication was causing severe sickness, that it wasn’t switched straight away. Sometimes an anti nausea is given, until adjusted to medication.

When you do stop propranolol reduce slowly. I was advised to stop abruptly and it gave me migraines. Had to restart it.

[Flower1703 in reply to PurpleNails]

Sorry they stopped the carbimazole I had to take 3 together in the morning they were 5 mg I think and with the propananol I supposed to take 3 but I just take 1 around dinner time and 1 before I go to bed

[PurpleNails Administrator in reply to Flower1703]

That’s a very low dose. 40mg a usual starting dose for carbimazole. Either your levels are slightly elevated and therefore do not merit a higher dose or you have not been prescribed enough. Carbimazole works best to split the dose but taking together is safe. Propranolol does come is sustained release but usually taken 3 or 4 times a day.

[Flower1703 in reply to PurpleNails]

Well when the doctor rang me couple of days ago to stop taking my thyroid medication she told me that my thyroid levels were so high but thought thyroid must be making more hormones that the medication wasn't strong enough and making me sick to start me on something else

[Flower1703 in reply to Flower1703]

I just don't get it all I'm trying to take so much in learning about my hyperthyroidism its hard for me where I keep getting brain fog I even forgot how to spell my 5 year-old daughters name the other day

[PurpleNails Administrator in reply to Flower1703]

3x 5mg or 15mg dose 1x a day is not sufficient for high levels and a week will not be long enough to have any affect. Did they make you very sick? Do you think the medication was the cause? The high thyroid levels may be causing it.

If you started several medications in one go it could have been an excipient or filler in another of the medications. Has stopping helped? Do you think you could have tolerated it better if you split the dose? I’m not suggesting you start take taking it again, against what the doctor has advised but if you think you could manage you could discuss with doctor?

Brain fog is very common, I couldn’t remember my youngest date of birth, I was trying to register her for nursery. I had to take form back following day.

It’s all very overwhelming when you are unwell & have lots to learn about thyroid & treatment, most people can’t retain anything learned. I read a little everyday and over time I gained helpful knowledge but I look many month before I had confidence in what I understood.

Do you have a “Fitbit” or way to monitor heart rate? If your heart rate becomes very fast or if you develop any fever or feel agitated don’t wait for a doctors appointment report straight away.

[Flower1703 in reply to PurpleNails]

Yes I have a fit bit my heart rate is 120 when resting

[PurpleNails Administrator in reply to Flower1703]

That’s very high. How long has it been like that? Does your doctor know it is this high. You likely need a ECG.

[shaws Administrator]

There's info in the following link:-

thyroiduk.org/?s=overactive

[lynzpower]

Morning, is propalanol the beta blocker? I was also prescribed this due to my racing heart palpitations etc. I didn't take this as the warning is that it can make you less aware of hypo events and so is a danger for t1diabetics. The heart palps is well scary partic if like me you have never had this before. I declined this as I need to be aware of my hypos ad. ThaT has to take priority as I do have frequent hypos.

Having said that I am apparently euthyroid but the palpitations and uneven heart beat still persists. Dunno. 🤷‍♂️

I take carbimazole which is to effectively slow down the production of tsh. Everything has sped up which is why the weight loss and now it's time to take something to SLow you down. Dont worry I'd be amazed if u don't gain some weight once your medication starts.

However,, Despite taking this for 18m I am Basically non the wiser.

But this forum will help xx

[Flower1703 in reply to lynzpower]

Yes its the beta blocker my heart still races a bit and I still have the tremors in both my arms and legs while taking it, they taken me off the carbimazole and trying me on something else but to be honest I don't think my doctor has a clue what's she's doing to be honest so I can not wait to see a consultant who knows what they're doing

[Willow2010]

Hi I have an overactive thyroid & also Ted.Mine started with what I thought was an eye infection,

The wait to see an endocrinologist is long!!

Your GP should do a full blood count for you with thyroid function test,

Go back to him or her and insist.

I see an eye consultant every two weeks but have being seeing a private endocrinologist.

If you can its better as the monitoring is more efficient as the Nhs is swamped with diabetes,

The cause of your overactive thyroid can be diagnosed & overactive is more difficult to treat than under active.

Carbimazole is usually prescribed at first .

I had weight loss some itchy skin when starting on carbimazole & palpitations which is the thyroxin going crazy.

People seems to have lots of side effects of degrees & adapting to treat those.

Be happy to share if that helps diagnosed around a year ago.

[Flower1703 in reply to Willow2010]

On Monday my doctor will be ringing me so I will get the test results and upload them on here

[Lovemymoggies]

Hi Flower1703 I'm in a similar situation, so can't really offer advice as still trying to figure everything out aswell. The advice I've received from individuals on here has been amazing and potentially halted my 'is it all in my head as no real support or info from my GP which left me feeling like I was being an annoyance. Thoroughly over that now, am just living life at a snail's pace, keep eating and toileting (sorry too much info there). Patiently waiting for next set of bloods and plan to pay for private scan, specific bloods etc. Work are being supportive so that's great and have to say now I know I've got a condition , I seem to have relaxed as the variety of symptoms I've been having for the last 12 months now make sense. I know this isn't really any benefit but unfortunately we have to find our 'fight' to get anywhere with a patch and repair medical/care system we receive in this country. Keep strong 😥 x

[Flower1703 in reply to Lovemymoggies]

If you don't mind me asking how much did you pay to go private?

[Lovemymoggies]

Haven't gone private as yet but have been advised on here can gain a thyroid scan for around £150 (yet to arrange) and specific bloods which I have checked via medicheck for £79. I'm hoping when I get results this will be further evidence to get a referral which I haven't got as yet.

I noticed you live in Wales? I live in the Midlands, I attended A&E in the South of England whilst working in the area due to unbearable symptoms of palpitations and breathlessness a couple of weeks ago and Endinocrology wanted to see me in clinic but I was out of area and they stated referral required in Midlands via letter the Consultant sent to my GP, which hasn't happened, he wants to try medication initially.

It's extremely obvious that this is postcode lottery with regards to receiving adequate referral/ treatment which is disappointing

🤔

[deancat]

Just to add to the other comments, has it been mentioned by the doctors to avoid normal tea and coffee and drink de-caffeinated instead? I also found that when I was hyper, chocolate, fizzy drinks and liquorice also triggered some awful heart palpitations

🤢 but everyone is different.

Good luck with the next few months and I hope everything settles down reasonably quickly.

[Flower1703]

I have now been put on 50mg propylthiouracil 3 times a day and an urgent referral to see a endocrinologist so things are starting to look up