What questions to ask at Endo visit ....?

[Silverpony]

Hello, am visiting Endo on Tuesday 24th March. He diagnosed Graves back in May 2014 & I am a third of the way through his 18 month protocol of Carbimazole & Propanalol. Am now taking 10 mg carb & only take the beta blocker when I really need it.

What questions should I be asking him? I thought the aim of his protocol was to stop the Graves Tp antibodies which are now testing negative. But what about the TSH Ab which were present in October but haven't been tested since?

Should I ask for further testing? This endo is treating the thyroid and not the immune system attacking the thyroid, as I get weaker & weaker am kinda losing faith in his treatment.

Am feeling simply dreadful on this treatment plan and my health is deteriorating; every day another symptom of varying degree. Today it's my muscles: the lightest of activity will engender muscle & joint pain for up to a week. Recovery time from activity has gone from days to weeks. Am short of breath when walking, chest pains & am generally exhausted. The list goes on .....

This past year has seen me go from a bouncy, outgoing size 8 yoga teacher, practicing 7-10 times a week to a size 14 shut in who struggles to make the bed & has to rest between brushing my teeth & can't stand up or walk for too long. I cannot understand where my energy's gone & am struggling to adapt to "new me". Some days are better than others ......November & December I was virtually bed ridden after getting the flu jab. Violently ill for 6 weeks, didn't lose a pound!

Any guidance would be gratefully received, I would like to go to my next appointment fully armed.

Listed below are some blood tests (from the "beginning") in May 2014 & the last three from this January when I thought I was getting better ......hope it's makes sense to someone.

Many thanks,

Andrea

28 May 2014

TSH <0.01 (0.3-4.2)

T3 9.6 (2.5-5.7)

T4 23.2 (9-23)

24 July 2014

TSH <0.01 (0.3-4.2)

T3 5.9 (2.5-5.7)

T4 18.2 (9-23)

TpAb *H134 (<75)

TSH Ab *H 4.0 (no range)

1 September 2014

TSH 0.05 (0.3-4.2)

T3 4.1 (2.5-5.7)

T4 11.7 (9-23)

TSH Ab *H3.7 (no range)

TpAb not tested

6th October 2014

TSH 1.08 (0.3-4.2)

T3 not tested

T4 10.1 (9-23)

TpAb Negative

TSH Ab not tested

Ferritin 18 (10.0-120)

B12 411 (160.0-800.0)

Folate 8.1 (>2.7)

Vit D 52.2 (70.0-150.0)

7th January 2015

TSH 5.73 (0.3-4.2)

T3 not tested

T4 11.0 (9-23)

TSH Ab not tested

TpAb not tested

9th January 2015

TSH 2.92 (0.3-4.2)

T3 not tested

T4 10.4 (9-23)

TpAb Negative

TSH Ab not tested

27th January 2015

TSH 9.27 (0.3-4.2)

T3 4.8 (2.5-5.7)

T4 11.0 (9-23)

TpAb negative

TSH Ab not tested

Vit D 51.0 (70.0-150)

Ferritin 37 (10-120)

Folate 8.7 (>2.7)

B12 407 (160-800)

[shaws]

On of our Admins who has had Graves will respond when she reads your post. You are doing the right thing by enquiring before your appointment.

[Clutter]

Silverpony, I'm not the admin with Graves but I think your Carbimazole dose is overmedicating you and should be reduced. TSH >5 is considered to be subclinically hypothyroid and TSH >10 overtly hypothyroid. TSH fluctuates according to circadian rhythms so testing early morning on 7th Jan and around mid day/later 9th Jan could account for the disparity in those TSH results.

Your Oct TSH 1.08 looked good but Jan TSH 5.73 and 9.27 indicate overmedication and will be the reason for the symptoms you describe. Your Carbimazole dose should have been reduced when your TSH rose to 2.92 in my opinion. Carbimazole can successfully regulate thyroid and patients may experience a period of remission 9-18 months after being on Carbimazole. Remission is less likely to be permanent in the prescence of Graves antibodies.

Most doctors, NHS and private usually treat high or low thyroid hormone caused by autoimmune antibodies not the cause of autoimmune disease which is often thought to start in the gut. Gluten-free and other dietary/lifestyle changes can reduce antibodies and sometimes TPO antibodies will disappear but the same isn't true of Graves antibodies which often go on to attack other organs if the target thyroid gland is removed via thyroidectomy or radioactive iodine ablatement. Antibodies aren't routinely retested after the initial test to establish whether the thyroid condition is autoimmune in nature.

Ferritin improved 27th Jan but is still low. Optimal is half way through range. Taking 500mg-1,000mg vitamin C with each iron tablet aids absorption and mitigates constipation.

B12 is a little low, neurological symptoms can be experienced <500 and most here will supplement until B12 is high in range. 1,000mcg methycobalamin sublingual lozenges, spray or patches should be sufficient plus a B Complex to keep the other B vitamins balanced. Most folate ranges go up to 20 and half way through range is generally acceptable. There is the RDA of folic acid in most B Complex vitamins.

Vitamin D 51 is also suboptimal. Supplement 2,000iu vitD3 softgel capsules or spray daily until the end of April when sunlight is strong enough to stimulate vitD if you are able to get sun on your face and arms a few hours per week. We all need to supplement Oct-April to maintain levels due to low ultraviolet light.

[Silverpony in reply to Clutter]

Thank you Clutter, great information. Been trying out the paleo diet for a few months now, not feeling any better yet! Had more bloods taken yesterday & will get results on Tuesday at my next Endo appt.

In your opinion, is it worth asking my GP for B12 shots? Have heard of great inprovement in symptoms for some.

Am extremely grateful for your kind attention. Hope you're enjoying good health yourself.

With many thanks, Andrea

[Joy333]

Hi Silverpony,

I too have graves and on carbimazole. Going by your results, I would say from September your t4 results are too low to feel well on and you've been overmedicated and should've been reduced to 5mg at that point to stop you going hypo. Your t4 since then has remained too low, you must feel awful.

Hope this help a little

[Silverpony]

Thank you Joy, I do feel bad! Few people outside of this site appreciate the impact Graves & it's attendant symptoms have. Am very grateful for all the information given above & the support on this forum. Endo listened to me, at length, helped me get up from the chair and was visibly moved by how I had deteriorated since my last visit. However, my new levels are:

16th March 2015

TSH 1.62 (0.3-4.2)

FT4 10.6 (9-23)

after reading above that I may be over-medicated I dropped the Carb to 5mg & he was very happy with the results. Am now advised to take 5mg every other day or 3 days.

I do however feel so much worse, the litany of new symptoms; constant muscle & joint pain, crushing fatigue, sore throat, hoarseness, (I won't go on, but you know what I mean) "Are not thyroid related & your GP will refer you to Rheumatology (8 weeks) & an ENT Surgeon (12 weeks). And so it goes on ......!

Thank you again for your kind replies. I hope you are enjoying good health yourself.

With best wishes, Andrea

P.s. British Summer Time begins this weekend, will we still be freezing in summer?! Never been so cold in my life! Three layers, two duvets & a hat. In bed!