Seeing my Endo on Monday. Some blood test results should be in which were not on the system when I had my first appt with him at Christmas. He used my private tests to ascertain I was Vit D deficient so I have been on 50,000iu of Vit D (1 tablet per week) and took the last tablet yesterday. Six weeks in all. Now I have to take 800iu per day.
I asked him if I had Hashimotoās at last visit and did I have Graveās disease then prior to RAI treatment? He didnāt give me a definitive answer so expecting some answers on Monday. He didnāt have access to my notes of when I had RAI and he was looking to have those for this appointment.
@SeasideSusie any advice on what to ask to get the most from my appointment? (I read everything in here and take notes. I took my notebook along to first appointment. Felt a bit nerdy š¤ but he said it was good to see a patient being proactive in their own treatment!)
Thanks in advance š
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Aslangal
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Iāve been taking 200 mcg Selenium which has within it:
4mg B6
30mg Zinc
30mg Vit E a-TE
180mg Vit C
and a Seven Seas Joint Care:
includes 10mg Vit D
2.8mg Vit E q-TE
60mg Vit C
0.6mg Manganese
Pro Biotic
30 billion
Iāve been reading up on optimal supplements and found a good combination through my selenium manufacturer but was waiting to see Endo incase he took more bloods. No biotin in any of these. š
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Assuming coeliac test is negative you can immediately go on strictly gluten free diet
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(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
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Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Well ... hereās the thing. I actually asked the Endocrinologist at my first appt in December, did I have Graves? Is that why I had RAI treatment? It was tablet form by the way. He couldnāt tell me because he didnāt have my notes from the hospital. Hoping to have them on Monday.
Well you really need to find this information out :
RAI is generally the treatment option for Graves - do you remember taking any anti thyroid drugs during this period, usually Carbimazole is prescribed.
Swinging hyper/hypo/hyper sounds like Hashimoto's Disease :
Hopefully this time the endo on Monday will have all your records and be better able to answer your questions.
Thanks. I know right? How do I not know this? Back then - I didnāt ask any questions. We trust Doctors too much that what they are telling us must be the best thing. Itās only because I started researching, coming on to this site and being proactive in my treatment that I actually asked to see an Endocrinologist. We shall see how it goes š
but we are where we are, and hopefully your mind will be put at rest on Monday and you'll have better understanding of things.
There are some people who have Graves and Hashimoto's but I would have thought since you have had RAI and your thyroid destroyed, if there were Hashimoto's antibodies as well as Graves antibodies within the gland they would also have been destroyed.
My understanding is that Hashimoto's antibodies only attack the thyroid, whilst Graves antibodies can surface anywhere in the body. It's only when they attack the thyroid that the symptoms can become intolerable, serious, sometimes life threatening, and the guidelines suggest removing the thyroid gland thereby removing the symptoms and rendering the patient hypothyroidism.
It's a pity the NHS have no knowledge or understanding of how to deal with the autoimmune component of Graves Disease.
I did read last year that there was a vaccine being developed but I think it has run up against a few problems. This is obviously the way forward, as it is quite wrong to destroy a perfectly healthy major gland in an attempt to try and contain an auto immune disorder, that ultimately, is for life.
The thyroid is a major gland and as you probably now realise, living without a thyroid comes with it's own set of issues, especially when not being able to access the full spectrum of thyroid hormone replacement on a NHS prescription.
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Update on latest endo appointment to review T3 treatment 
First endo appointment Monday
visit to Endo on Monday
Fully suppressed, but I still feel rubbish
