Crazy thyroid journey!: Looking for anyone who... - Thyroid UK

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Crazy thyroid journey!

Mac64 profile image
8 Replies

Looking for anyone who may feel the same? I am waiting for thyroid surgery after a very long journey and feel it has taken so much out of me to get to this point. I think the medical profession can underestimate that on top of a very unstable condition, alongside this there are emotional ups and downs that are not recognised. I am now unable to work due to my lack of energy and feelings of being totally burnt out. I have had Graves for 18 months after 20 years of being hypothyroid (I have found Graves such a different disorder and very difficult to live with) and due to my thyroid being so unstable after months of Carbimazole with Propranalol and now PTU, I have been offered RAI or Surgery. I was so unsure of the RAI but having now seen the surgeon, I have also been put off the surgery by him! The decision has caused me such a lot of grief and although I have now made my own decision, I wonder if anyone else feels the same or is experiencing a similar set of circumsances? I have become quite depressed about the illness, the indecision and the emotional turmoil that my GP has offered me anti depressants! Although most thyroid disorder journeys are unpredictable, surely there should be better awareness and ultimate care of patients who are often experiencing this. I'm sure Endocrinologists are extremely skilled and knowledgeable but it takes so long to be seen and the intervals between appointments can seem lonely and confusing with all the changing symptoms. Thankfully we have sites like this, although many people would prefer not to have to access the internet as no two people have exactly the same story. I think my point is, why are we all struggling so much? I am now too tired to read the thousands of threads and just want this whole thing to be over so I can get on with life! Thanks so much to everyone who offers advice and Good Luck to everyone with their crazy thyroid ~ this little gland has a lot to answer for!

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Mac64
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8 Replies
Rocca profile image
Rocca

I sympathise and am really sorry you have had to give up work. I too have hyperthyroidism, since last year. When I have been at my worst with it, I find it exhausting, frightening, depressing, confusing. In a nutshell I think it is a badly managed disease because there's money to be made somewhere with giving drugs rather than investing enough to find out what prevents or cures it. I hope your surgery goes well.

Sedum profile image
Sedum

hi Mac64

I chose not to take any of the doctors routes, they didnt make sense to me. Carbimazole was going to knock out my immune system they said, which in my view would make me more susceptible to cancer, and was just a suppression of symptoms. The radiation doesn't appeal to me and I didnt believe they were necessarily going to be able to balance me afterwards. I always choose a nutritional route and have gradually regained health and now energy. In the last month I have added something very advanced to my nutritional regime and have regained a feeling of optimism and motivation and steady energy I haven't had for a long time. Email me direct if you want to know more. I already took antioxidants, trace minerals and fucoidan. I have cut out household and personal care chemicals for decades now and I eat an organic mixed diet and have gone gluten free. All this has happened over a long time and each step has helped.

I think it is important we help ourselves. the doctors I have encountered over many years have not had answers.

Mac64 profile image
Mac64 in reply to Sedum

Sedum, thank you for your kind offer and your story. I agree and have considered that Nutrition most certainly has a part to play in the healing process and when I feel motivated, I plan to look into that. At this stage, I am struggling to do much about anything but again, many thanks.

greygoose profile image
greygoose

Forgive me for saying this, but I don't understand how you could be hypo for 20 years, and then find out you have Grave's. Have you actually had your antibodies tested? Are you sure you don't 'just' have Hashi's? Or aren't 'just' over-medicated. I don't see how that works.

Mac64 profile image
Mac64 in reply to greygoose

Hi Greygoose. Yes, I know it seems odd, but it's true! I had Zoladex injections over 18 months ago and this contributed to my hyperthyroid state! Prior to that I was underactive and taking daily Thyroxine, with no idea what lay ahead! Give me underactive any time!

greygoose profile image
greygoose in reply to Mac64

Just because you are hyper, doesn't mean you have Grave's. Grave's is caused by antibodies, it's not just an over-producing thyroid. Have you had your antibodies tested?

If I were you, I would want to do a lot more research on this subject before submitting to the knife. Is the hyperthyroidism caused by Zoladex temporary or permanent? Doctors are far to ready to whip out the thyroid at the slightest excuse.

Mac64 profile image
Mac64

Yes, I have had antibodies tested. This has been a long, very arduous road and I am at the end of it. The surgery has been discussed at length now so I am more or less ready. Thank you for your condern.

madge1979 profile image
madge1979

If you have Graves' disease .. it's definately .. no fun !

I thought I was going to die .. and sadly .. wouldn't have given a hoot if I had !

.... I now cannot believe it left me feeling so Low !

I have Graves ... but for over a year now have been Euthyroid ..

.. but once the state of being Euthyroid has been achieved it's imperative to do something about staying that way ..

I and others on here have done that by replacing nutrients vitamins and minerals .. ....and I don't mean a Mumbo Jumbo diet .

If you havevGraves you will have been HYPER ... or running at 100 miles an hour for a long time ....and your body will have been exhausted and depleted of your

Very vital stores of vitamins minerals and nutrients therefore making you suffer in very many ways ..

People talk about Carbimazole being a dreadful drug .. and I Do Not take Drugs, I was afraid to take it .. but I was very fortunate and reacted positively to it .., it worked quickly and well for me and My blood was checked regularly for associated problems

After my numbers were where I wanted them to be... I very quickly started to take my many supplements ...and I now feel almost as good as I was before my Graves' disease started

I must have been pretty ill before Carbimazole ... but I'm certainly NOT NOW ! I had every symptom on the list .

I'm sure you will find loads of folk now are switched on to how to do this .... and to do it well.. to enable them to get their health back and to bring peace to the very important and Vital little Thyroid Gland ... and to feed the Immune System to persuade it to calm down and leave your body in peace and in harmony ..

You could try this method ...RAI And surgery are likely irreversible

... nowadays .. with knowledge .. Graves disease is NOT ... in all cases !

Best of luck

Mx🌹

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