Is this odd?: Three months ago I wrote on here... - Thyroid UK

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Is this odd?

Dee1962 profile image
8 Replies

Three months ago I wrote on here that I'd been to an endo appointment, and my TSH was low, but T3 and T4 were raised. Last Thursday I had another blood test and got a call Friday morning asking me to see my gp next Monday morning. I asked what the problem was and was told that my TSH was at 8.5, which apparently is quite high. No other info though. Does this seem odd to anyone, that it was low just three months ago, and is now high? Or am I just paranoid?

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Dee1962 profile image
Dee1962
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Judithdalston profile image
Judithdalston

Hopefully your doctor wants to treat your high TSH, even though it has not reached 10 .... by giving you levothyroxin. Perhaps you have Hashimoto's thyroid autoimmune antibodies( the majority of hypothyroid sufferers do)...the antibodies attack the thyroid gland mistakenly believing it is 'alien'. The dead cells , along with their thyroid hormones, are dumped into the blood stream, resulting in peaks of high thyroid hormones that can change week to week. So your TSH can go up and down too. You can get tested for two autoimmune antibodies TPO and TgAb- TPO only usually done via NHS, but can have TgAb done privately if that test proves negative. Gradually more thyroid is destroyed making sufferers permanently hypothyroid. If you are offered 50 mcg levothyroxin worth trying, but your doctor can't control the antibodies...you might find gluten free diet might help. If you are Hashimoto's then it is also characterised by poor gut absorption- worth getting your VitD, B12, folate and ferritin tested, and if necessary supplement to optimum levels in upper levels of ranges.

SlowDragon profile image
SlowDragonAdministrator

That's typical of autoimmune thyroid disease. Also called Hashimoto's. Often initially slightly hyper type symptoms as thyroid breaks down under attack and then increasingly hypothyroid

As GP to test both TPO and TG thyroid antibodies plus vitamin D, folate, ferritin and B12

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 Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

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_...

Symptoms of being hypothyroid

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

Dee1962 profile image
Dee1962 in reply to SlowDragon

Thank you for the info. Do gp's treat it or let it run its course? 10 years ago I was on block and replace for thyrotoxicosis. Took the meds for about 18 months.

SlowDragon profile image
SlowDragonAdministrator in reply to Dee1962

No you most likely need Levothyroxine to bring TSH down to around or just under one and FT4 towards top of range and FT3 at least half way in range

Low vitamin levels are extremely common as result of Hashimoto's. As is gluten intolerance

Ask for vitamins to be tested and coeliac test too just to rule coeliac out. Majority of us are gluten intolerant, no test available, just have to try it

Dee1962 profile image
Dee1962 in reply to SlowDragon

Thank you so much, that's really helpful.

SlowDragon profile image
SlowDragonAdministrator in reply to Dee1962

NHS guidelines saying standard starter dose of Levothyroxine is 50mcgs (far too many GP's want to start patients on 25mcg. This is enough to turn a TSH down and reduce your own thyroid output, but too little for you to function properly

beta.nhs.uk/medicines/levot...

Bloods are retested 6-8 weeks after each dose change and dose increased slowly in 25mcg steps until TSH is around one. Most patients eventually need somewhere between 100mcg and 200mcg of Levothyroxine.

Vitamins may need supplementing to improve at same time if too low

Dee1962 profile image
Dee1962 in reply to SlowDragon

I've seen my gp this morning, and suggested to her it could be Hashimoto's, which she said is quite possible. She has put me on 50mcg of Levothyroxine for the time being, and says I should have another blood test around beginning of September. She was reluctant to say much else though. I asked for the biochemistry results, and have the last three, but they only have my TSH and T4 levels on them, so I'm guessing that they've not done any antibody tests. I've also not been referred back to the endo clinic.

Marz profile image
Marz in reply to Dee1962

I would ask to see your results from when you were first diagnosed some 18 months ago - which anti-bodies were tested to confirm Thyrotoxicosis ? There have been cases here on the forum when members discovered the Hyper phase was due to Hashimotos - which of course can cause swings from Hyper to Hypo ...

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