No meds with hyper symptoms: I was diagnosed with... - Thyroid UK

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No meds with hyper symptoms

rimmer profile image
11 Replies

I was diagnosed with overactive thiyroid on the 21st Sep I was put on carbimazole that day after 15 days I started to vomet my left leg swelled up I was shaking uncontrollably and sweating bad and was very dizzy..I was taken to hospital after collapsing and now my GP has taken me off them I am waiting for an appointment with the endo..if I am not taking anything for the overactive thiyroid what could happen,,I came off them on Monday this week..so far my sickness has gone my shaking is slightly less as is my sweating my leg has gone down to,,still a bit dizzy tho..is it ok to have no meds with hyper symptoms Ho my heartbeat is very fast it was 145 when I collapse it's down to 95 now..

Karen

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rimmer profile image
rimmer
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11 Replies
greygoose profile image
greygoose

It depends how hyper you were. Do you know your TSH/FT4/FT3 levels?

rimmer profile image
rimmer in reply togreygoose

Hi greygoose

My doc said my levels were high??? I was just their yesterday I asked what she ment she just said Ho you've gone overactive would not comment on the levels ect when I pulled her up on this she said you need to see an endo it will be sorted by them...for the past 15 month I have had flare ups of my thiyroid..symptoms being tremors in hands and legs sweating,intolerance to heat raging thirst and peeing a lot..everytime I mentioned this to my doc he said it's the menupause and would not do bloods one time he actually did do them that was about 10 months ago but I had to wait 2 weeks for a nurses app and I felt like I was no longer attacking my thiyroid so bloods came by normal..I think I was very lucky this time tho because we have a new doctor and I managed to get her,,she immediately took blood their and then came by overactive thiyroid..👍🏻 I cannot take carbimazole as I have had bad side affects so on nothing now...I am going to request a pit in out of my tests and post it on here

Thanks greygoose

greygoose profile image
greygoose in reply torimmer

Yes, that's not good enough. If you live in the UK, you have a legal right to a print-out of your labs. You need to know exactly what was tested and what the results were. Doctors are too keen to jump to conclusions without doing the proper tests.

You said she said you'd 'gone over-active'. Does that mean that you were under-active before?

rimmer profile image
rimmer in reply togreygoose

Well mine is a long story as far as I know I have never been hypo..but in 2004 I was diagnosed with overactive parathiyroid glands it took my GP about 4 wks to take blood of me he was not going by my symptoms might I add this was my old GP I moved surgery because I was getting no where with them..my bloods returned to normal levels and I was left no follow ups ect..and now I have gone hyperthiyroid..I know the parathiyroid was emitting calcium in to my blood stream where as the thiyroid is putting thyroxine in the blood stream..to be quite honest I don't think my GP could care less I'm just another number😡 When I collapsed on Monday the shop rang my GP surgery to inform them I was being taken to hospital as I did have an appointment with my GP that day.i was in hospital for about 4 and a half hours until my bp and heart rate lowered but unfortunately their was no endo on so I had to make my way back to my surgery the next morning believe me I was exsausted in pain feeling sick but my GP insisted I come to the surgery.my shaking is bad and walking is a struggle but when I saw the GP she said I need to see an endo and she would write a letter to get me an appointment and that's where I am now..also I have never had a scan on my thiyroid but I will be asking for one

greygoose profile image
greygoose in reply torimmer

Well, do get copies of your blood test results. It is absolutely essential that you know exactly what is going on. :)

Valarian profile image
Valarian

It's not unusual to wait 12 weeks or even longer to see an endo, and people may or may not be prescribed carbimazole in this time. For most people, it's pretty uncomfortable until anti-thyroids begin to bring thyroid levels down, but there can be more serious consequences. Your GP may be able to prescribe beta blockers, which might help with some of the symptoms.

As Greygoose has said (and as I mentioned in my response to your post two days ago), we'd be better-placed to help you if you shared your most recent thyroid test results..

Were you told the reason for your being admitted to hospital was due to a reaction to the carbimazole ? (Presumably you told them you were taking this ?) If they thought your admission was to do with being hyper/taking carbimazole, I would have thought you'd have seen an endo while there.

rimmer profile image
rimmer in reply toValarian

Hi

I'm afraid our endo does our hospital and Carslile she was up in Carslile so no one to see that's why I was sent back to my doctors so she could refer me😡 And yes they said I was having bad side affects to the drug they took me off them I have not to go back on them GP said endo will know what to do🤔🤔🤔

SlowDragon profile image
SlowDragonAdministrator

You need to know EXACTLY what was tested

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

We see far too many Hashimoto's patients misdiagnosed as Graves

Low vitamin levels are extremely common with both Graves and Hashimoto's as are gut issue

As you say, both these are autoimmune in origin

Looking at cause is often essential. But traditional medics disinterested

Gluten is extremely common issue with Graves or Hashimoto's

Ask for coeliac blood test first, just to rule it out, before trying it for 3-6 months. If it helps stick on it, if not reintroduce and see if symptoms get worse

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If TPO or TG antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though these can be slightly raised with Graves

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

rimmer profile image
rimmer

Thank you for that info

I'm sorry to say I have been badly treated by my surgery in this last 2 years I have been in hospital vometing blood and passing blood from the bowl I was in for ten days ad all the tests and they could not find anything wrong😡 Then about 7 months ago I went deaf in my left ear it's came bk but it's now like being on a plane and wanting to pop it..seen ENT the drum will not pop but they don't know why🤔🤔 had head scan that was normal.the consultant who dealt with the bowel said it could be colitis but not sure👎🏻 I think I'm attaking my body 😡😡😡

5219 profile image
5219 in reply torimmer

Hi

Your symptoms are very severe, not nice at all. What is it with our GPs and endos that they don’t listen to us and how we feel. We know our bodies and know when something isn’t right.

12 years ago I was diagnosed with Hyperthyroidism graves. Was put on propranolol and Levothyroxine and was told by my endocrinologist that I would have to have it irradiated. Which I did some months later. Nothing was said to me about all side effects that would come with it once I had it done. I go to the GP with known symptoms and they say on it’s not connected with your thyroid. Funny thing that most people with a thyroid condition have the same symptoms.

I have taken upon myself to find out more and research the symptoms I have and have private blood tests done, then go back to my Gp with the evidence. Hopefully then they may do something.

SlowDragon profile image
SlowDragonAdministrator in reply torimmer

So you need full thyroid and vitamin testing

As listed in my first reply

Low vitamins are extremely common

If thyroid antibodies are high strictly gluten free diet helps, often significantly

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