Thoughts please regarding radio iodine therapy

[APAscot]

This is probably going into too much detail but below are test results from April 2016 when I was diagnosed with hyperthyroidism. Started on 5mg of Carbimazole in May 2016

TSH <0.01 Range 0.3 - 5

Free T4 25.4 12- 22

August 2016 must have had tests while in hospital, for other pretty major problems, as letter from endocrinologist said T3 levels were okay. No copy of test results.

November 2016

TSH <0.01 0.3 - 5

Free T4 14.9 12 - 22

March 2017 New reference range from January for TSH

TSH 0 .02 0.27 - 4.2

Free T4 12.7 12 - 22

Serum alkaline phosphatase 112 35 - 104

October 2017

TSH 0.03 0.27 - 4.2

Free T4 12.5 12 - 22

Free T3 4.2 (not showing range on copy I have)

Vit D 157

November 2017 had thyroid scan. Told I had toxic nodular goitre and advised to have radio iodine treatment. Thyroid antibodies negative. March 2018 had biopsy which showed benign so not sure why I need the RIT, especially as I was told I should have it even before the biopsy was performed.

January 2018

Hydroxy Vit D (D2 & D3) 159.2

Alkaline phosphatase 106 35 - 104

Neutrophil 7.32 2 - 7

Mean blood cell volume 100 76 - 98

(have various blood clotting disorders - on Warfarin)

Monocytes count 0.97 02 - 08

End February told to increase Carbimazole to 10 mg every other day and also to stop taking Vit D as my level was too high. I had been taking Vit D with calcium for osteoporosis. Had previously been taking alendronic acid for approximately 10 years so came off of those last year as they should not be taken for that length of time without a break between. So now I'm not getting any vitamin D and one of the problems with hyperthyroidism is osteoporosis. Did have a Vit D test last week (after leaving off for 2 months) so maybe result will show I can restart.

April 2018 had further tests but when I called for result was told "stable". Seeing endo on Thursday so should know more then. Did have test early morning and fasted so maybe that wasn't such a good idea if I'm hyper.

Have checked Thyroid UK tick sheet for hyper and hypo and have more than double the symptoms for hypo than hyper. Don't actually feel ill, mainly weakness, breathless and tremors and voice problems. Don't know where I stand now but don't want to become hypo if I have radio iodine treatment (having read how ill so many people feel - or is that Hashimoto's?).

Am also on anti epilepsy medication.

April 2018 referred to A & E re breathing problems and chest pains. (Have previously had DVT and pulmonary embolisms). Dr is referring me to practice clinic for spirometry and chronic obstructive pulmonary disease (copd) clinic.

I am a 72 year old female but the above probably makes me seem like a wizened old woman, which, I can assure you I am not. Until a couple of years ago I seemed to be the healthiest among our group of friends then suddenly everything was thrown at me.

Should have mentioned no results anywhere for Ferratin or Folate.

Grateful for your advice. Thank you.

[greygoose]

I think it's negligent of them to diagnose hyper, without testing the FT3, and the antibodies - both for Grave's and Hash's. I don't think they can come to any conclusion without knowing the full story. So many mistakes are made because of them assuming things.

People can be very ill after RAI, or with Hashi's, or any kind of hypo, but that is down to the competence of the doctor treating them, not the fact that you've had RAI. The problem is, endos are very keen to give you RAI or TT, because it makes like easier for them, but they don't then know how to treat the resulting hypothyroidism.

[APAscot in reply to greygoose]

Thank you grey goose I follow your comments very closely.

[greygoose in reply to APAscot]

You're welcome.

[APAscot]

Thank you very much Helen000, what a lot to absorb! Thyroid antibodies were negative in November 2017. I have to avoid K vitamins as they mess around with the Warfarin (can't remember whether they increase or decrease the efficiency). Will need to check re epilepsy drugs too but will try and get the other tests you recommend. Thanks for taking the time and for such an informative reply. Will read it yet again!

[bantam12]

A parathyroid test must be done at the same time as calcium as doing separately wouldn't give a reliable result.

[APAscot]

Not sure which antibodies were tested (excuse my ignorance!). Have some results on a letter but no ranges showing. Am on Warfarin for life as I have multiple blood clotting conditions. Ditto anti epilepsy drugs as I have a brain malformation which changed a couple of years ago and very nearly saw me off. Osteoporosis diagnosed many years ago and only had it checked because my mother was suffering from it. At that stage it was pretty bad but eventually the medication brought it down to osteopaenia, which is why I want to get back on to something that will keep it in check. Turns out my mother also had hyperthyroidism and blood clotting problems - although she didn't go for the record, which I seem to have done!

Calcium total was 2.36 then calcium adjusted was 2.45 last November. In February this year it was 2.30 and 2.38 when adjusted. Range showing 2.2 - 2.6. Does this look as if parathyroid should be checked?

Will check my medication re causing nutrient deficiencies.

[Cat4health]

You're getting hypo symptoms because your levels are very low, bordering on hypothyroid since November 2016. Jts weird to suggest RAI when anti-thyroids have worked more than well. I also don't understand why they upped your dose in February, well sorry scratch that i do understand - they are trying to force you in hypo to bring your tsh up. When they said 'antibodies negative' what antibodies did they check?? One really big issue I see here (and with almost every endo I've ever met) is zero proper communication with you. You have not be hyperthyroid since November 2016 for example you have been 'subclinical hyperthyroid' which has different considerations but hypothyroid would come with its own complications so honestly I'd seek another better second opinion from another doctor and say no to RAI

[APAscot in reply to Cat4health]

Thank you Cat4health. I haven't seen the same consultant twice yet. First consultation wasn't until last October as I hadn't been referred by my GP. I was only referred because I asked if I would be able to come off of the carbimazole and it was a different GP and she said I should have been referred to an endocrinologist once I was known to be hyper. Since then have seen one specialist registrar, one locum consultant and am now going to see another specialist registrar (who I think is new, but I don't know, so maybe I will get some sense out of this one). I honestly don't know which antibodies they tested as I don't know what all the different things are that come back on the results. Could you tell me what to look for and I can then let you know. When I was first told I was hyper I did Google it but didn't really get into all the detail It's only since coming on to this site that I've realised just how complicated the thyroid is and all the problems that people have and know that I don't want to end up being constantly ill - which I'm not at the moment. I will question everything with the new endo on Thursday. Thanks for your help.

[Cat4health in reply to APAscot]

I'm glad to hear you have a new consultant and are going to ask them a lot of questions. I would look at ElaineMoore.com. She's a subject matter expert and has lots of good articles on her website that can give you helpful information in an accessible form. Knowledge is your biggest asset here. I echo greygoose by saying both graves and hashi antibodies are important to check. I am not an expert on nodules but I understand benign nodules can be very normal and not a problem. Again check Elaine Moore.com she has info on that. Also check her members forum as it can cover subjects that are more specific

[APAscot in reply to Cat4health]

Thank you. Will definitely check Elaine Moore.

[Cat4health]

Hi Helen000, in the bit where you suggested detox you list spirulina and kelp. These are both seaweed products with extremely high iodine levels. This excess iodine could push a normal person into a hyper state and a hyperthyroid patient into a potentially dangerous episode. Just a small heads up on part of your advice