ONE YEAR ON FROM CARBIMAZOLE

[sanmure]

Hi i am looking for some advice late in 2013 i was diagnosed with an overactive thyroid after 7 months of hell, a GP in the practice said i had anxiety and prescribe me Mirtazapine, my hair was falling out, also my eyelashes, eyes were bulging, i couldn't eat my weight dropped 2st to 7st i couldn't stop shaking, then in September of that year i saw another GP in the practice, he took my blood and called me two days later and told me my t4 was at 72, prescribed propanolol and carbimazole, i started to feel much better after a week, went to my hospital appointments for just over a year. I was taken off carbimazole in May 2015. the sad thing is the tremors and shaking have never really left me, my bloods were last checked in November 2015 and i was told all was normal. Since March this year the shaking has got worse and my feet hurt so bad, they get so hot and itchy and red, the palms of my hands are red, i cant wear shoes or trainers , and another GP has has put me back on Mirtazapine, says its anxiety, can anyone give me any advice please, as i don't know what to do as i have no life it just seems to be never ending, should say i am over 50, and widow. Thankyou

[bluebug]

Hello and welcome,

Unfortunately it is common for doctors to claim blood results are "normal" even if you are having problems including physical signs and state your illness is all in the mind.

Therefore you need to go and request ALL your blood test results with the ranges from reception as is your right under the Data Protection Act 1998. You may have to pay a fee for the results but the maximum is £10 for electronic records. You also may have to wait a few days.

It is vital to know what your numbers are otherwise neither you, yourself, or others on here can point you in the right direction so you can get well again.

[sanmure in reply to bluebug]

Hi I did get all my blood results up to when I came off Carbimazole in may 2015 since then my bloods were done every two months untill 1st November last year then I was told no further bloods needed as my tremors and problems with my feet were not thyroid related even though she has no idea what is wrong,, gave me steroid cream and left it at that xx

[Jazzw]

Goodness, what shocking treatment you've received. I'm so sorry (and as someone who's very recently been widowed myself - my sympathies. Why does everything have to be such a struggle, eh?). Big hugs xx

How confident do you feel about going back to see your GP? Would it be better to register with a new practice and start again? It may be enough just to see someone new at your existing practice.

What you need to know is what your blood tests look like now - I think you could probably do with a fresh set. Ask if the doctor can test: TSH, FT4, FT3, ferritin, Vit D and Vit B12. It would also be interesting to know if you actually have Graves Disease or Hashimoto's Disease - the doctor can test to see whether you have antibodies to confirm that.

If your doctor won't do all of the tests - and sadly some won't - having private tests done is always an option.

Covering up the symptoms with other drugs isn't really an answer, is it? You need to know what you're dealing with and whether you're receiving the best treatment for your condition.

[sanmure in reply to Jazzw]

Thank-you so much for your advice unfortunately I live in a village in the highlands of Scotland there is only one to practice in the area, the problem is that 2 of our doctors have retired and they have known me for 15 yrs the new GP has come to her first practice and changed a lot of the way patients are dealt with. I did ask if my problems could be thyroid related and was told no , so I then asked because my body has been through so much could I be lacking in any vitamins or minerals no again , seems like antidepressants are the way to go now a cure for everything, so sad. It's tough when your on your own and your right it is a struggle, but I just keep saying upwards and onwards xx

[bluebug in reply to sanmure]

You can do the Blue Horizon plus 11 if your doctors are not helpful.

[sanmure in reply to bluebug]

OK thank you so much for your help x

[Jazzw in reply to sanmure]

Sounds like the new GP isn't in the least bit clued up. How could they possibly know if you're deficient in vitamins/minerals if they won't test them?

I know it's so hard - maybe take a friend with you to the doctor - and stand your ground. Say you want to be tested properly, not be on the end of the doctor's "best guess". Or if you don't know of anyone that would go with you, write a letter explaining how you feel and what you want and ask for it to be put with your records. Sometimes that extra bit of evidence is enough to prompt the doctor to act.

If you get nowhere, don't worry - we can still help. As Bluebug says, there are private labs who will send you tests that you can do yourself at home using a pricked finger - no phlebotomy required. At least you'd then know what was going on. But first stop, try our good old NHS one last time. You don't deserve this - you deserve better after everything you've been through.

Let us know how you get on. Xx

[sanmure in reply to Jazzw]

Thank-you I will try again will phone doctors tomorrow and see if I can talk to GP if all fails maybe someone could point me in the right direction of a private lab, feel I need to find out what is going on or I will never feel better . It's so lovely the care and understanding from you all xxx

[Karen321]

This makes my blood boil 😡😡😡 I was told I had anxiety and depression for three years before I was finally diagnosed with hyper and Graves' disease. Please do go back and see your GP and ask for copies of your blood results

[Minnskimoo]

Hi Sanmure.

And Karen321. Same here!😡

I am new to this forum as I am having numerous problems getting a diagnosis from my GP too, so I totally understand where you are coming from! Although, it is not so good at all that you are dealing with this by yourself. I am so sorry to hear that. And 50 is the new 'Middle age' 😀However, it is helpful to read through these messages as it makes feel me a little more reassured that I am not totally losing the plot!

I am experiencing lots of symptoms that relate to some form of auto-immune disorder and have been made to feel like a 'malingerer' or 'hypochondriac' so to speak!

I too have been given a diagnosis of anxiety and depression. Prescriped Escitalopram and sent to see a counsellor for CBT therapy. I reacted to Sertraline prior to this so therfore given the 'let's try a different one that will also stop this constant anxiety!' Havent actually taken it!

I had bloods taken in October of last year as I had and still have shortness of breath and tingling in my left arm and right foot. Panic attacks from hell.

I am having trouble with my eyes. Optician said I have very dry eyes, as on waking feels like the muscles are not working properly, opening them is quite difficult and really uncomfortable. The Optician explained about Sjogrens syndrome as I also have mouth ulcers just about every week. My dentist has sent me back to the Dr requesting a B12 blood test twice. GP said it was fine when tested in October 2015. Might I also add, as I am sure someone else may have experienced this, that my Vit D was at a very low 12. Taken 3 months of D3 and then stopped. Now the levels are going down even with a good diet. The level is 'normal' 43 and seems to be "settling at a reasonable level!" My TSH that I requested to know was 0.53 and I was told in the 'normal range' Anyone in the know please advise. Thank you. 👍🏻

Then to add to the never ending list, my hairdresser noticed how brittle and thin my hair appears around the front of my head. That and the above, it seems, are connected to my age and gender.😡 Doesnt it always? . My sister has Graves, my Grandmother had Cushing's my mum had severe Osteoporosis and went from chunky to skinny and broken bones in her ribs after someone hugged her too tight... I could go on. I Really feel angry and cross and want to shake the Dr and say, This. Is. So. Not. Me!!! Another thing too, my fuse is short and my temper is not the best. I have always been such a mild, mannered person with a calm disposition... I will not stop until I get some sort of result. I know I am not right. Don't give up, it's your body and you know when something is out of kilter.

Anyone relate?

Sorry to all for the long-winded response.

[Jose651 in reply to Minnskimoo]

Hi Minnskimoo,

Welcome to our great forum.

Can I ask if you know your actual result for the B12 test done in Oct.

J 😊

[Minnskimoo in reply to Jose651]

Sorry Jose651, I am not aware of the results of my B12 blood test. As my extensive list of bloods were classed as 'normal' apart from the Vitamin D which was responded to at a later date, I have had to ask at my various appts about ind results and that one hasn't been addressed! Asking makes you appear like a hypochondriac, as sometimes, you are looked at with disdain, as if to say "I will be the judge of what is a good result and what is not! At my next visit, which will be to the despair of the Dr is imminent, I will enquire.

[Jose651 in reply to Minnskimoo]

Don't worry about what they think. They are your results and by law you are entitled to know the exact figure and the exact ranges that the lab uses.

Please ask for copies of all your bloods tested recently.

You may have to pay a small fee for paper etc.

So many members of this and other forums are told your blood tests are ' normal'

For instance; Vit B12 serum result 207ng/ (191-900)

If that was my result my GP would say it is 'normal' because it is within the range, but only just. I would go away not knowing that I was very LOW in B12 and would need to take action before my condition would become progressively worse.

Your symptoms may be down to low B12.

You can phone and the receptionist will give them to you.

I had to learn the hard way when my GP misdiagnosed B12/PA.

Take care M

J 😊

[Minnskimoo]

Thank you. I wasn't aware that the receptionists are allowed to give you exact scores of blood results. The usual response I am greeted with is- " no further action required!"

I appreciate your response

Cheers👍🏻

[elayneg]

I have the tremors sometimes it feels like my head is going to fall off but it is all inside. It is a symptom of Hyperthyroidism and if your bloods are within the normal range it will eventually go. I have to say though what is normal for one is not for another I function so much better with my bloods just within the normal range I have a brilliant Endo who has supported me and told me I know my body better than he does but he says I will have to stay on the lowest dose of ptu for life because I have the minute I come of medication I go hyper again.

I don't know if this will help but I had worse tremors on Carbrimazole than I do now on PTU.

Do not let them fob you off with it is all in your head it isnt.

Good luck hope it improves soon.xxxx

[sanmure in reply to elayneg]

Hi elayneg Thank you for advice , my GP has now decided to have my bloods done by the nurse sometime in the next week, its been 14 months since hospital took me off carbimazole, but the tremors have been creeping back in for the last 6 months, and are now pretty hard to cope with, once i get my results i will post them for advice. Take care xxxx