Swinging between hyper and hypo

[SickLeo17]

Hi

Since being diagnosed with Graves the dr is still trying to find my appropriate dose that will keep me at the euthyroid level.

Does anyone else have this problem?

My bloods are being taken fortnightly atm as I swing so quickly.

[SlowDragon Administrator]

Are you absolutely sure you have Graves' disease and not Hashimoto's

It's surprising how often Medics assume it's Graves, but can be early stage Hashimoto's

Have you had TRab or TSI antibodies tested - this is test for Graves' disease

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies for Hashimoto's. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

TPO and/or TG can also be raised with Graves - usually less so

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

This doesn't test TRab or TSI

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Autoimmune Thyroid disease. Food intolerances too, especially gluten.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

[SickLeo17 in reply to SlowDragon]

I took a screenshot of your response to help recall everything you suggested

[greygoose]

Is he just dosing by the TSH?

[SickLeo17 in reply to greygoose]

In my most recent bloods the Free T3 & Free T 4 were in the normal range and TSH was higher than normal.

My most recent symptoms were hypo in nature.

Originally My TSH was undetectable and Free T3 & Free T4 were about three times higher than normal.

Auto Antibodies for Hashimoto’s were inconclusive but my TSH autoantibodies tested positive for Grave’s. I presented at emergency with Tachycardia and a long list of other hyperthyroid symptoms.

My vit D was a little low, haemoglobin was low, I showed iron deficiency and my calcium levels were a little low

The Dr is looking at tsh and Free T3 & Free T4

[greygoose in reply to SickLeo17]

Well, you sound hypo, at the moment. So, maybe you've got Hashi's and Grave's. It does happen, and it does make dosing difficult.

[SickLeo17 in reply to greygoose]

I have wondered the same thing especially with swinging both ways so quickly while being treated.

[SickLeo17]

Do u think I should request another autoantibodies test for Hashimoto’s ? The last one was done in Dec-Jan

[greygoose in reply to SickLeo17]

What was the result of the last one?

[SickLeo17]

For Hashimoto’s it was only a little elevated and considered inconclusive

[greygoose in reply to SickLeo17]

A little elevated is positive, not inconclusive. It's just that they'd much, much rather diagnose someone with hyper than hypo.

[SickLeo17]

Last time being overmedicated with carbimazole caused severe hypothyroidism. Then they stopped all meds. The hypo symptoms and bloods worsened in the hypo range. Then I had a tiny dose for a short time of thyroxine and quickly became hyper again.

Then thyroxine stopped and carbimazole restarted and then it looked like I was getting closer to mid range and meds reduced and then halved again when back at the hypo side.

As of today carbimazole is now a single tablet a day

[SlowDragon Administrator in reply to SickLeo17]

So you definitely appear to have Graves

Suggest you read Amy Myers website. She had Graves

Gluten free diet is supposed to help Graves as well as Hashimoto's. I have Hashimoto's, so can't speak from experience on Graves, but certainly helps many with Hashimoto's

[Valarian in reply to SickLeo17]

Carbimazole comes in 10g and 5g tablets - which are you on ? I've got Graves', and am struggling to get my thyroid levels stabilised, but they haven't swung that quickly, and the only time I was in the hypo range, I was on a fairly high dose of Carbimazole (20mg).

The problem with testing TPO alone when someone is hyperthyroid is that more than 60% of people with Graves' are also positive for TPO. To confirm Graves;, you need more antibody tests - TSI or TRab (they don't usually do both). thyroiduk.org.uk/tuk/about_....

TSH being low isn't by itself a positive indicator for Graves" (although Graves' is the most common cause of hyperthyroidism). TSH is a hormone produced by the pituitary gland, which tells the thyroid it needs to produce more thyroid hormone. Assuming the pituitary gland is in working order, TSH will be low in hyperthyroid patients, as they are already producing excess thyroid hormone. It can be slow to respond as thyroid levels are brought down by Carbimazole, which is one of the reasons the endo will monitor FT3 and FT4 as well (both the latest results, and the trend of each result over time). It's a bit odd to have TSH elevated when you are euthyroid, but this may simply be a bit of a hangover from your body needing to increase thyroid levels quickly when you were over-medicated.

[SickLeo17 in reply to Valarian]

5mg carbimazole tablets. The 1st dr was irresponsible and had me on 60mg for a few months

[Valarian in reply to SickLeo17]

60mg is a high dose, but your thyroid levels were high too, and they usually prescribe a high dose initially to bring your thyroid levels down as quickly as possible. For comparison, I was on 40mg for twelve weeks, and my thyroid levels were double the reference range. I went below range too, towards the end, but it was picked up quite quickly as i was being re-tested every four weeks at that point. Unfortunately, when they reduced the meds, my thyroid bounced into action straightaway, and I ended up over-range again. They put me back on 20mg, but at the next test, i was still over range, so am back on 40mg for four weeks.

Their main concern if you are hyperthyroid, is to stabilise you below the upper limit of the range, and they don't seem too bothered if you dip below for a short period. In trying to get the dose right, the endos are having to contend with both the nature of Graves' (which means the thyroid can vary in its activity levels) and our individual reactions to teh medication.

[SickLeo17 in reply to Valarian]

My thyroid status switched between hyper to hypo very quickly. A week to two weeks was all it took to switch.

My tsh went from 0.01 to 60 over a period of two months and then between 70 to 100 in the week once all meds were stopped.

Then I went on a tiny dose of thyroxine and I switched from 100 to 0.08 in less than two weeks.

Over the following month I was on 20mg antithyroid and two weeks later reduced to 10 mg and my tsh was back to 7 while my t3 & t4 were in the normal range.

Now my Dr has reduced antithyroid to 5mg daily and checking bloods again in a fortnight

[SlowDragon Administrator in reply to Valarian]

I think the TSH auto antibodies test mentioned was probably TSI or TRab test

[SickLeo17]

Thank you for your reply. Graves certainly knocks you around and affects everything