Where to go next

My thyroid levels are high at 5.5 and I am currently on the maximum of 200mg thyroxine per day I have been told that this cannot be increased and I don't know what to do next, I am exceptionally tired all the time and suffering with increased sweats/ hot flushes night and day, I also experiencing reduced feeling in my hands and joint pain. Would love some advice - I am due back to see my GP on Friday

[cjrsquared]

I have 2 friends on higher doses of levothyroxine, one takes 300mcg daily and the other alternates between 250mcg and 275mcg. They are in different parts of the country under different doctors. Sounds like your doctor doesn't know enough about hypothyroidism, I would ask for a second opinion.

[Hidden in reply to cjrsquared]

The doctor who I spoke to a couple of weeks ago was not the one who has been treating this issue and so I think that if I don't follow it up myself I will slip through the net and continue to feel horrid.

[Clutter]

Rootie-Tootie,

Your GP is misinformed, there is no maximum dose of Levothyroxine which can be prescribed. There are several members taking considerably in excess of 200mcg. If your GP is unsure how to treat you s/he should refer you to endocrinology.

NICE CKS recommends:

Advice should be sought from an endocrinologist (or referral arranged) if the person:

Has persistent symptoms despite treatment with LT4.

cks.nice.org.uk/hypothyroid...

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[Hidden in reply to Clutter]

Thanks

[Hidden in reply to Clutter]

Thanks Clutter. I am will be seeing the GP who started all the tests so might get somewhere tomorrow.

[SeasideSusie Remembering]

Rootie-Tootie - it's possible you are not absorbing your Levo properly due to low nutrient levels, and joint pain can be indicative of low Vit D. Ask to have the following tested, as all need to be at optimal levels for thyroid hormone to work

Vit D

B12

Folate

Ferritin

[SlowDragon Administrator]

Do you have high thyroid antibodies ? Have they ever been tested? If so what was result

If you have high antibodies this is autoimmune thyroid disease also called Hashimoto's

Very common when hypo and especially with Hashimoto's to have poor gut absorption. (Leaky gut) and/or low stomach acid. This means you can struggle to absorb thyroid medication and also extremely likely to have low vitamin D, folate, B12 and/or ferritin.

Have these been tested, if so post results and ranges.

Do you have any gut symptoms?

Hashimoto's is highly likely to also have hidden food intolerances- usually gluten sometimes either or also dairy

Going on strictly gluten free diet helps gut heal and absorption of nutrients

Other things that may help are daily probiotic, fermented foods eg kefir, avoiding all soya

Read as much as possible about thyroid and gut

See scdlifestyle.com, amy Myers, Chris Kresser, darkness.com

The Thyroid Pharmacist website and also the thyroid secret video series on YouTube if you have Hashimoto's

[Hidden in reply to SlowDragon]

Thanks for this I am speaking with my GP on Friday about whether it is possibly Hashimoto's but I don't think I have had the antibody test and will raise this with the GP tomorrow

[SlowDragon Administrator in reply to Hidden]

They often don't understand autoimmune thyroid, and can dismiss it as an irrelevant test. It isn't. You need to know.

[Hidden in reply to SlowDragon]

I will most definitely insist that they test me for this. I am sick of feeling exhausted and under the weather all the time

[SlowDragon Administrator in reply to Hidden]

If stuck, you can get private blood tests

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

Many of us here use Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven

NHS is extremely reluctant to retest antibodies, & very rarely tests FT3