Please help! ... I've recently been diagnosed with Graves and Hashimoto (& Sjogren's) ! and need to decide what to do to treat my thyroid?!

Help, I’m a newbie on here, 38 yrs old, newly diagnosed with Hashimoto, Graves and Sjogren's auto immune diseases and feel very uninformed and confused and need to make important decision regarding my thyroid ASAP.

My Diagnosis’

oDiagnosed with Hashimoto & Graves (March ’17) – main symptoms are tiredness, feeling “on edge”, anxious, like I’ve had 10 cups of coffee and heart palpitations (I’m now on beta blockers – propranonol 20mg, 3 x day)

oDiagnosed with Sjogren’s (Dec ’16) main symptoms are tiredness (but I'm still working), slightly achy muscles (but still swim and gym when I feel up to it /force myself) and I've struggled to focus and concentrate / brain fog for years.

Blood results:

TSH (0.27-4.20) Mu/L

•Sept 2016 - 1.2

•Dec 2016 - 0.77

•Jan 2017 - 0.02

•Feb 2017 - 0.02

Free T4 (12-22) pmol/L

•Sept 2016 - 13.5

•Dec 2016 - 14.5

•Jan 2017 - 22.6

•Feb 2017 - 19.1

Other abnormal bloods (+normal range)

•Thyroglobulin Assay – 11.7 (1.6 – 59.9 iu/Ml - Immulite 2500)

•Thyroglobulin Antibody – 20.2 (Roche Modular)

•TSH Receptor Antibodies – 4.1 (Neg – 1.75) ng/ml

•HDL Cholesterol – 1.98 (1.2 – 1.7)

•Anti Mullerian Hormone - 0.90 pmol/L (v low for 38 yr old)

•Antral Follicle Count – 2 (v low for 38 yr old)

•FSH – 3.8 U/L

•MCHC – 307 (320-370) g/L

•Mean corpuscular volume – 99.9 (77-95fL)

•Bilirubin – 26 (3-20 umol/L) – suspected Gilbert Syndrome or Haemolytic process

Options for treating my thyroid:

•Full Thyroidectomy (Consultant not recommending)

•Radioactive Iodine (everyone I’ve spoken to says stay well clear of this option)

•Carbimazole

for 1 yr (max 1.5 years) then come off for 3-6 months to stabilise and should cure 60-65% of people?

Questions

•Why did TSH & T4 get so out of control in only a few months?

•Should I get a 2nd opinion on any of my diagnoses?

•Is my only realistic option Carbimizole for 1yr – 1.5 years

?

•I’m 38 years old and would like a family so keen to know reliable stats on Carbimazole

?

•Any else work knowing / investigating / questioning?

Thanking you heaps in advance!

Emma

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5 Replies

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  • Hi emmac78, I was diagnosed with Graves 20yrs ago and was on and off carbimazole for 12yrs and was pretty well for all that time was advised by endo to have Rai 7yrs ago and regretted that ever since. My advice is to try carbimazole and see how you get on with it you can always change your mind at a later date and go for RAI if you want or tt, but make sure you do lots of research first as once you had rai or tt there's no going back. As for the other things lm sorry I don't know enough about them to help but I'm sure others will be able to give you advice about them. Hope this helps.x

  • Thank you so much for your response, it was really helpful and nice to hear from you, and much appreciated. Especially your regret regarding the RAI, do you mind me asking what you specifically regret about the RAI? eg. have things not stabilised since? I was also told that carbimazole was for a maximum or 18 months? Good to know you were ok on it though, thanks x

  • Hi Emma, usually they will take you off carbimazole after 1yr-18mths to see if you have gone into remission, I did go into remission for a while then back on carbimazole for a while then back into remission for while could be a year could be longer, some people go into remission for years some only a few months at a time. I think my endo just got fed up with me and decided that I should try Rai and at that time I thought docs knew what was best so went along with it, I wish I had done research first so I could have made an informed choice. I have never felt as well since having the Rai as I did before the Rai. I used to work be it only part time before Rai now I don't feel well enough can't stand any stress at all and haven't got the same energy, I'm not saying I'm in bed all the time but I have to pace myself if I do too much then I feel exhausted the next day and just slob out on the couch for the day.i had a bad experience with my Rai so I'm probably biased against it, there was no problem taking it no pain or anything like that but they failed to take bloodtest after until 6 months by then I was so hypo I had become cycotic and ended up in ward for mentally ill luckily for me they realised I had thyroid problems and was transferred to hosp where I got right treatment and was able to go home after ten days but was still very ill had mental health team round every day for another month and was under psychiatrist for another year, it took me two years to be fully well again, all because they didn't check my thyroid levels when they should have. I've since found out levels should be checked at 6-8weeks after and then 3 months and then 6 months after RAi so if you do go ahead with it make sure you get regular bloodtest done after. From my experience I would still say try carbimazole first and see how you get on with it as you can change your mind later if you want but once you have Rai there's no going back.do hope this hasn't scared you but if this information helps stops one person from going through what I did then I'd be happy.

    Linda xx

  • Hi Linda, apologies for the delay, I thought I had replied but I can't see it. Thank you so much for your response and information on RAI, I am so sorry that they didn't test you and caused you to have all the above happen to you. It has been really helpful hearing your story and I really appreciate your time telling me. I do hope things settle down for you and you feel better, Emma x

  • Hi Emma

    Please please think very carefully about RAI. I had it last year as I have Graves' disease and I regret it so so much.

    I wasn't given full information and wasn't fully aware of how much the thyroid does.

    I have just discovered I don't convert T4 to T3 hence a massive weight gain and no chance of losing it.

    I personally would stay with carbimozole. I truly wish I had. Every day I regret having RAI treatment.

    Good luck working it all out I highly recommend talking it thru with the brilliant people on this forum. I've learnt more here in a couple months than in four years of seeing a gp and and endocrinologist.

    Xx

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