Coronavirus hospital appointments cancelled - Thyroid UK

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Coronavirus hospital appointments cancelled

Angel20 profile image
22 Replies

Appointments have been cancelled the ultrasound scan and the follow up with the Endo in April due to coronavirus the hospital will review again in 3 months time.

The Endo prescribed carbimazole 10mg before I was due to have an ultrasound scan for my thyroid, I was not pleased with his way of thinking, however, I collected the carbimazole from the chemist.

10mg I was not prepared to take because I was not in need of them to be so high.

As from yesterday I decided to take carbimazole my way.

The tablets come in 5mg so what I do is this. Cut the 5mg in half to give me 2.5mg carbimazole and then cut again the 2.5mg carbimazole in half again 1.25 mg of carbimazole then cut the 1.25mg again so basically I am taking 0.625 mg in the morning and 0.625 mg in the evening total of 1.25mg carbimazole per day.

Unconventional yes it is, but I need to start at the lower end see how this may work.

I will have private blood tests if it’s possible

I have not given up on my vitamins, I take these too - I am experimenting with carbimazole, because I know me, I know my body.

Your comments welcome

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Angel20
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22 Replies
Hkm2281 profile image
Hkm2281

I have my endo app tomorrow if they cancel it I will be so upset. I have waited 4 months and feeling very unwell now.

Angel20 profile image
Angel20 in reply to Hkm2281

Depends on the hospital 😊

Binkynoo profile image
Binkynoo

Hi Angel20

I have had experience with carb , I was going through the roof with my heart beat I felt strange gave me propanol until saw ending I started in 5mg per day and that was enough for my body I felt everything I felt it slow down literally ,I went a bit crazy couldn’t sleep ?health anxiety did this 8 months during which time had to have sleeping tablets few a&e visits my body wasn’t mine. Gp though needed anti depressant no ,just needed full blood count and optimise my vitamins and holiday on prescription which I did and felt great again off carbi I went back in range after demanding to see endo I knew I was being over medicated I felt my body coming alive again I was right . I had greaves disease .you you are the only one who knows how you feel 👍🏻💚binkynoo

Angel20 profile image
Angel20 in reply to Binkynoo

5mg carbimazole slowed you down ?

Did it help you how long did you take it

Binkynoo profile image
Binkynoo in reply to Angel20

Yeah I felt it did I know we are all different , maybe after 2-3 weeks of taking it I came off propanol I didn’t like the feeling from that . So I took 2.5 I cut it in half instead of the 5 what I remember I was on it for 8 months I wanted off I read an article call heal the thyroid madness helped me ,I knew I needed my body to heal and be at it’s best it wasn’t it was running on empty after having my baby hence overactive thyroid I knew I had to change something

. Even now 4.5 years off thyroid meds I still need to listen to my body I didn’t want the thyroid taking over i had to get back control was having bloods done every 6 months but stopped but due a check up o think shortly, hope this helps my main symptoms were fast heart , quite thin , really tense all time couldn’t relax a lot of sinus issues .

Stanleydoggy profile image
Stanleydoggy in reply to Binkynoo

The problem with doing this is that it takes up to a month for the results to show in your blood tests, therefore, your Dr will not be able to help you regulate or find the eventual correct dose for you, especially as it can take months between appointments. Yes the approach of medics is very crude but so is everything to do with thyroid health. I was on 30 carb to start with and believe me it saved my life. I would never risk changing the dose without telling my Dr. . Even on a small dose of 5. I admit I was seriously tempted to do what you are doing but on reflection I am glad I didn’t. I was very lucky as my GP helped me between appointments.

Angel20 profile image
Angel20

There is now speculation that London will be Locked down on Friday, nothing has been confirmed we are watching this space. Hence the cancellations of thyroid ultrasound scan, its going to be a long time before we get appointments again from hospitals. Those who are taking anti thyroid medications and are new to these tablets need to take care as there may not be anyone around for guidance.

Lora7again profile image
Lora7again

When I took PTU I would sometimes miss days if I felt unwell which did not make much of a difference to be honest. When I eventually did see my Endocrinologist my TSH was 9 because I had taken too much. All I will say is try to have regular blood tests and if you start to feel tired and unwell to stop them straight away and get you bloods tested. I did not take PTU for very long but it made my levels drop too low. Having said that we are all different and you might not notice much of a difference in how you feel. Read up on the all the side effects because this is a very powerful drug.

bnf.nice.org.uk/drug/carbim...

Angel20 profile image
Angel20 in reply to Lora7again

It is a very tiny dosage, the reason I am trying this out its because I take other vitamins, and L-carnitine. The advantage of doing it this way its because I felt not so unwell before. I have noted what you said Lora7again, thank you.

Fruitandnutcase profile image
Fruitandnutcase in reply to Lora7again

That’s pretty much what happened to me Lora7. 20mcg for a month, blood test then showed that nothing much happened, my dose was doubled to 40mcg for the next two months and when I was finally tested my results had gone from <0.03( below limit) to 7.(0.35-5.5)

I’d say whatever you do test regularly even if you have to pay for your own testing. It will be money well spent. Good luck with it all.

madge1979 profile image
madge1979

Keep having regular blood tests .. I have Graves .. but I can, with help from my DOCTOR 🙏. have bloods tested every 4/6 weeks to Keep a close eye on TSH , T3 and T4

I started Carbimazole at 20mgs a day and slowly over 4/5 months tapered down to

5mgs .. to become Euthyroid.

That was 2014 ... that worked very well for me ..

Best of luck

Mx🌹

Angel20 profile image
Angel20 in reply to madge1979

Thank you. Considering I did not want to take anything at all, for me it is a big step even with this tiny dosage of carbimazole.

madge1979 profile image
madge1979

Incidentally .. what vitamins do you take for your Graves’ disease ?

Angel20 profile image
Angel20 in reply to madge1979

L-carnitine, Acetyl L-carnite, vitamin D3, magnesium, Selenium, omega3fish oil, vitamin A, Zinc, Hawthorn, Iron. I do not take them all in one go. L-carnite is every day the others I alternate on different days.

madge1979 profile image
madge1979

Ahhhh.. you’re good at this .. already

Do you think you could post on here Your last set of blood results ... and the no’s. in brackets ( as those are the ranges ) and they vary from lab to lab apparently.

Then very clever people here will be able to advise you even further as to what you could then do ..

Enter a new heading .. not COVID19

Ie .. Graves’ disease or Carbimazole

I take all of those supplements you do ... and then .. some more

I prefer to help myself and I believe that NATURAL Minerals, Vitamins and Nutrients are the things that have kept me well now for years.

If you take D3. ... you should also take....

Vit.k2 mk7 to go with it ....as D3 , Magnesium and K2 mk7 all work together to make sure calcium is directed and locked in to your bones instead of soft tissue where it causes problems . Which you don’t need !

Google it to see

I’ve had Thyroid Storm and I’m so happy to take the Carnitines, not only do they help with that .. but also with the muscular pain associated with Graves’ disease .... and apparently help. dementia too. ..

No one can force you to do or take anything .. but if you have Graves Antibodies... and have anxiety issues or palpitations you may find that Carbimazole for a very short period is safe for you

.. I HATE toxic drugs with a passion..

My symptoms were life threatening

And I have to say I did NOT WANT TO REMOVE MY THYROID

.. so I took the Carbimazole as prescribed by private Endocrinologist and never looked back .

Look up the benefits of

Lemon Balm

Bugleweed

And ... Motherwort

If your symptoms are not terrible .. they will help you

Take care and

Good luck

Mx🌹

Angel20 profile image
Angel20 in reply to madge1979

I tried both bugleweed and motherwort in tea and also tinctures, they did nothing for me at all, in fact it made my condition worse so I stopped. Lemon Balm tablets I do have forgot to mention them, take these at night time. For me its L-carnitine and Acetyl L-carnitine that helps me tremendously. The vitamins I take also help too. As for bloods I am not yet ready to have blood drawn and will do so in due course.

Carbimazole I take less than 1mg because I take the carnitines. Whether carbimazole will prove to be good for me time will tell. I am far more inclined to go the natural way but decided to include carbimazole at its lowest dosage.

Thank you Madge1979

madge1979 profile image
madge1979

👼

Acetyl is most helpful .. it crosses the blood / brain barrier taking with it any meds you may take with it ... for better effect !

I have a great friend who put me onto this also .

She worked for Doctors in research for 35 years and swears Carnitines are the answer to Graves and Thyroid Storm .

Look up .. Italian Doctor Benvenga .. to see his work in The Carnitines .

She treated her Graves this way using 2.5mgs of Carbimazole plus the Carnitines very successfully and has now been Euthyroid for many years .

...apart from help with Graves ..they seem to energise me ... and relieve Graves associated muscular pain .

Can you monitor by blood tests how it is affecting you .

I didn’t realise THAT was ( wisely ) why you wanted to take such a small amount of Carbimazole .

You’re being very astute about this ..

Nice to see someone who Knows what they want ... but also. .. HOW they’re going to get it !

Empowerment ..that’s what we all need some of .. and you’ve got it !

Good luck

Love mx🌹

Angel20 profile image
Angel20 in reply to madge1979

Trust me, I did not know anything about what vitamins did for my body nor what the carnitines. I researched the web, I went to 3 natural medicine doctors it took me one year to get the info I wanted. I listen to my body and how I feel. For example, last night I took less than 1mg carbimazole, I woke up this morning and feel good and did not have the need to take anymore. This is the way I do things if today I am ok will not take carbimazole when needed I have the tablets, cut them up to give me less than 1mg carbimazole as I take the carnitines and vitamins.

I am probably experimenting but since it is my body and know how I feel its ok.

Initially the Endo wanted me on 10mg carbimazole no way. Now with the hospital appointments closed I will do what is right for me. I want more natural less conventional western medicine.

madge1979 profile image
madge1979

I bought

Bottles of

Lemon balm

Motherwort and

Bugleweed. In liquid form

Mixed them together in a brown glass bottle and took it whenever I felt nervous or was shaking .. it worked very well indeed for me .. it maybe that you didn’t take enough of the tinctures and as often as you should have .

Mx🌹

Angel20 profile image
Angel20 in reply to madge1979

No it did not work for me at all, it made my symptoms far worse, I took the tinctures straight without water, 5ml in the morning 5ml in the evening, waste of money

madge1979 profile image
madge1979

Sorry

Angel20 profile image
Angel20 in reply to madge1979

it works for many and also does not work for others good news there are alternatives

thank you for your input madge1979 appreciated

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