Thyroid problem with hughes - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Thyroid problem with hughes

Kittybaker
Kittybaker

Can anyone help with what is going on. I am seeing a private specialist called professor Singhal in endocrinology as now my thyroid seems to be problematic. I have posted a few times over the past year about weight gain, tiredness etc.

The specialist I am seeing seems to think my autoimmune illness is attacking my thyroid. My results are swinging between underactive and overactive. On Saturday when I saw him I was shaking and had more bloods carried out. I am awaiting these results. He seems to think I am overactive even though my results are so unpredictable. I am confused with the weight gain and tiredness etc. Pics shall be added when it says there isn’t a problem adding the attachments

8 Replies
MaryF
MaryFAdministrator

Hi, it sounds like you probably have Hashimotos, also known as autoimmune thyroiditis, which can cause slow and fast thyroid problems. Many find LDN a good medication for that, I am on it, but I buy my own having it privately prescribed, also no gluten for me, I regularly do my own private testing to make sure my iron, folate, ferritin etc is up to scratch as well as my thyroid function, B12 and D. I hope your consultant is supportive of your currently problems. MaryF

Kittybaker
Kittybaker in reply to MaryF

Thank you Mary. What is the medication you use. Can you pm if it’s not allowed

MaryF
MaryFAdministrator in reply to Kittybaker

I am on Low Dose Naltrexone, as are a few others on here, it is privately prescribed but great for lowering antibodies, also I take natural desiccated thyroid, which is on a named patient basis only or via private prescription. Are you a member of the Thyroid UK Forum on here? A good idea to join it. MaryF

Kittybaker
Kittybaker in reply to MaryF

Hi Mary . Yes I am in the Thyroid forum.

Hughes-Comrade
Hughes-Comrade in reply to MaryF

Mary, side question. Does it sound reasonable to build a case for suggesting to my hematology doctor to run ferritin, B12, vit d,

A) every three months

B) every four months

Because of aps and I’m hypothyroid?

Would this also be important to suggest including iron and folate as well? I actually thought ferritin was pretty much the same as iron.

Thank you.Dave

MaryF
MaryFAdministrator in reply to Hughes-Comrade

Hi, yes you can ask, not a bad idea, however I find that across the UK the thyroid tests are not detailed enough or the B12 testing, so although I go along with my consultant/GP testing I also do my own, which gives a far more accurate picture of what is going on not only with my levels of B12 and Iron and D but also my complete thyroid profile, annoying to have to order them myself and pay for them, but until the situation changes, I shall carry on doing this. MaryF

Kittybaker
Kittybaker in reply to MaryF

Sorry. I should have said. I have monthly Vit D vials. Daily iron tablets. Monthly vit B12 and folate from the GP as my body depleted this.

Hughes-Comrade
Hughes-Comrade in reply to MaryF

Thank you!

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