Symptoms fluctuating

[Pasionaria]

I am positive for Trab, TPO and Tg antibodies. I had Graves, was treated with carbi (didn't need high doses), went into remission and stopped carbi as per endo advice about 7 months ago (after 14 months of treatment), was ok for a few months and now, instead of suffering a hyper relapse as I thought I might, I have developed hypothyroid symptoms: fatigue, low resting heart rate, more sensitive to cold (very rare for me), lethargic, feeling faint, feeling of pressure in my head, unable to concentrate, weak legs, excessively tired with just some walking.

My routine bloods in Nov: TSH 7.1 (0.3-4.2) T4 10.8 (12-22) T3 3.9 (3.1-6.8). My consultant said I could have developed Hashi-Graves, or maybe the thyroid stimulating antibodies have become blocking antibodies and we would check again in Jan and maybe try levo, by that time I had not felt the symptoms yet (or if I had I had thought it was something else) so I said fine, but then I started feeling unwell and missing work and asked for an earlier test and appointment, so they tested me in Dec but then it was the holidays and then my consultant was off sick and I only received the Dec results [TSH 5.8 (0.3-4.2) T4 12.6 (12-22) no T3] in January by letter (different doctor) saying that ‘it does not appear that I am developing hypothyroidism’ and that they would re-test in 6-8 weeks. Growing quite desperate, I tested with Medichecks, this Tuesday 13rd Jan, expecting a deterioration judging by how impaired I felt and I could not believe the results: TSH 3.74 (0.3-4.2) T4 14.1 (12-22) T3 4.3 (3.1-6.8) – plus the highest TPO I have ever had at 401 (0-34). Vit D 98 (50-250), folate 13.6 (>7), Vit B12 85.7 (37.5-188).

Some days I am ok (although not my best self) and then all of a sudden I am a wreck for a few days. I am like a yo-yo. Fingers crossed, I have not developed depressive nor anxiety symptoms so far.

Given that the test results are not so clear cut, should I ask for a scan or even do one privately? Would this help me to get treatment?

But, can I have treatment if it looks like my levels are fluctuating? Do I have to suffer until they stabilise at the bottom? I hear in this forum that meds are replacement rather than top up but I do not understand this.

Any advice gratefully received.

PS I supplement Vit D and Magnesium and I am not inclined to try a gluten free diet

[PurpleNails Administrator]

2 over range TSH’s - 3 months apart is criteria to start replacement. You have autoimmune.

Prehaps they are being over cautious because of your history of being hyperthyroid.

Explain your symptoms are causing issue & push to start replacement.

[SlowDragon Administrator]

I tested with Medichecks, this Tuesday 13rd Jan, expecting a deterioration judging by how impaired I felt and I could not believe the results:

TSH 3.74 (0.3-4.2)

T4 14.1 (12-22)

T3 4.3 (3.1-6.8) –

plus the highest TPO I have ever had at 401 (0-34).

Vitamin D 98 (50-250),

folate 13.6 (>7),

Vitamin B12 85.7 (37.5-188).

Was test early morning ideally before 9am, only drinking water between waking and test

No ferritin result?

[Pasionaria in reply to SlowDragon]

Oops, I forgot to say: fasting, only water, but it had to be at 10am, the earliest time they do at my Medichecks clinic. The one in Dec was also fasting at 10:15am, but the one in Nov was not fasting at 1:45pm (hospital dictated, no choice). Ferritin: 178 (30-264) (less than I have had in the past).

[pennyannie in reply to Pasionaria]

Hey there again :

Ferritin a little high - could be because of inflammation ( Crp ) do you have a reading there please ?

Well Graves can wax and wane throughout one's life, and for some the blocking and stimulating antibodies can burn each other out in the first phase of this AI disease and remission achieved relatively easily.

A TSH over 3 used to be the accepted level used for prescribing T4 - Levothyroxine - and symptoms probably start creeping in once the TSH rises over 2.

Currently the NHS require a TSH of 10 on 2 occasions months apart - hopefully your history and these o/range antibodies might hasten a prescription for T4 -Levothyroxine.

Your TSH has recovered well and appears to be responding in the normal manner so presume this means you have no Graves antibodies circulating or ' sitting on ' and driving down the TSH - which is how this disease first starts which causes the over production of thyroid hormones.

thyroidpharmacist.com for all things Hashimoto's - and think you already have elaine-moore.com who writes extensively on thyroid Auto Immune disease.

[Pasionaria in reply to pennyannie]

Thanks! what you say sounds reassuring. Ferritin is actually better than it was a year ago (227). CRP has come up pretty good I think at 0.79 (>3). I never got to the bottom of the ferritin issue, kind of got tired of it and by that time the normal range for older women had been raised significantly ...

[SlowDragon Administrator in reply to Pasionaria]

one in Nov was not fasting at 1:45pm (hospital dictated, no choice).

Might have been over 10 if had been tested earlier

[Pasionaria in reply to SlowDragon]

I know! If only we had a continuous thyroid monitoring device to give us a proper picture and the way to medicate accordingly!