Hi, I joined today. Is anybody else being trea... - Thyroid UK

Thyroid UK

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Hi, I joined today. Is anybody else being treated for Hyperthyroidism and Multiple Sclerosis?

17 Replies

I can't remember how long I've been taking Carbimazole. Has always been 5mg and have never really felt 'normal', maybe coz of the MS too? Maybe 2 years. I was initially diagnosed with Hypothyroidism but stopped the Levothyroxine 100mg (I think) very soon after the pills hurt my brain like a needle and never went back to the doc.

Never been told my T3 or T4 but must ask in at my next visit to the doctor. This info has never been offered to me and I didn't know anything about it until I did online research myself.

The hospital consultant doesn't give me many options except radioactive iodine route which I don't want.

Yesterday I deliberately started drinking more water (from the tap until I get a filter) and am sweating more than usual. Today, I'm getting more flashes of heat rising to my face. Will keep drinking extra water for a fortnight, plus the occasional decaff coffee and tea to see if there are any changes.

Much health and healing to all of us

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17 Replies
greygoose profile image
greygoose

If you were initially diagnosed with hypothyroidism, then you cannot have hyperthyroidism. The thyroid cannot go from one to the other, like that. On the other hand, you could have Hashi's, and your doctor doesn't know his Grave's from his Hashi's.

I very much doubt they've ever tested anything except the TSH - and the TSH can get very, very low with Hashi's. But, a low TSH does not automatically mean that you are hyper. You need your full records, I think, not just the last lab test. You need to know all that has been tested, and exactly what the results were. Doctors rarely give that information - either they think the patient won't understand, or they'd rather keep it to themselves. But, if you are in the UK, you have a legal right to print-outs of your results. And, it is imperative that you avail yourself of that right. Don't let an ignorant endo, who's actually a diabetes specialist and knows nothing about thyroid, whip out your thyroid for nothing.

in reply to greygoose

Hi greygoose, thanks very much for your informative response. Am fatigued as always and will reply once I go to the doc and get a printout of my test results if you don't mind.

greygoose profile image
greygoose in reply to

Of course not. :) Take care.

in reply to greygoose

Well, I called the doctor today for a printout of my Thyroid tests and because the surgery is a doc short, I will have to wait till the afternoon on Tuesday 20th for a call-back. Receptionist said I could get the details by phone from the doc. I still want the info on paper for my peace of mind.

greygoose profile image
greygoose in reply to

Can't you go into the surgery and ask the receptionist for a print-out?

in reply to greygoose

The receptionist said they can't access that sort of info about patients and it has to be the doctor.

greygoose profile image
greygoose in reply to

Oh that's rubbish! Is she new? Doesn't the doctor have enough work to do without that. Me thinks she's fobbing you off! Unless this is a very peculiar practice!

in reply to greygoose

My thoughts too but I'll wait till next week and see if they give me an excuse to not give my info. The receptionists are fairly well versed cos I still pass them when I go to the surgery for my meds cos that part of the process is easier than ordering from Boots. It probably is a peculiar practice. NHS Scotland seems to be changing for the worse.

greygoose profile image
greygoose in reply to

Oh dear. Well, good luck. And, if they make things difficult, do remind them that they are breaking the law. :)

Marz profile image
Marz

You could check to see if your surgery has on-line records. Take some ID with you next time so you can sign up.

Have you had VitD tested ? Often low with MS ... Also test B12 - Folate - Ferritin. Am suspecting your levels are low. B12 is better over 500 & Ferritin and Folate mid-range. VitD over 100.

vitamindcouncil.org

Please stick with this forum for advice and support 😊

in reply to Marz

Thanks for your advice. I will go check out everything in advance cos memory can be like a sieve sometimes!

in reply to Marz

Hi, I called the doc for info about my thyroid. I vaguely remember getting a list of all the pharmaceuticals prescribed to me over a lengthy period of time. Will have to check if I still have it or ask for a printout Waiting till Tues 20th for a call-back about thyroid.

in reply to Marz

Re: Vitamins - I forgot to reply to this important question. I have never been tested for deficiencies and I only go to an MS nurse at the hospital for a chat every 6 months but it might have been changed to yearly. I used to go to an MS Society but I don't think there's anybody there to advise. It is so busy. The nurse at MS society told me hyperthryroidism was a common symptom along with MS but never gave any advice. My brain is too slow to think quickly and ask questions.

MS nurse at the hospital did help to get me a warmer and lower level flat and a bus pass so physically she has helped a lot.

Marz profile image
Marz in reply to

You need to focus on getting those results with ranges that are legally yours. Something is not right about your diagnosis and treatment and that is why it is important to know what has been tested. We have seen it here before when members have been wrongly diagnosed and treated - shocking.

B12 - Folate - Ferritin - VITD MUST be tested asap as they are crucial to your wellbeing and thyroid ...

in reply to Marz

Hi again, I called the surgery to ask about tests for Vit D, B12, Folate, Ferritin and so I will go to the doc tomorrow for these tests or feedback if they have done them but never told me. I will also see about getting a printout of my thyroid tests tomorrow instead of waiting for the doc to call on the 20th Nov.

Marz profile image
Marz in reply to

Keep up the good work 😊😊

Marz profile image
Marz in reply to

Did you manage to get your results of vitamins and minerals and the thyroid results ? 😊

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