High dose hypothyroidism

[Jc46]

I’ve been hypothyroidism for 3 years, long storey but on 200 Levo as was very ill but goodish last 18 months. Tried to go lower (175) but felt ill (bone ache, tired, no toilet) doctor said stay on 200 but suffer the long term consequences?! WTF , is this life?

[shaws Administrator]

What 'long-term consequences' ? Our body dictates the dose, i.e. when on insufficient we feel very symptomatic, if well, we're on an optimum dose.

When first invented, thyroid hormones saved people's life altogether. They were given sufficient to relieve all clinical symptoms and there were no blood tests at all.

There would probably be more 'long-term consequences' with too little rather than what suits. If we took too much we will have unpleasant symptoms and reduce ourselves without asking GP.

Doses of NDT (natural dessicated thyroid hormones) - the original and which contain the thyroid hormones a healthy gland would produce were increased slowly until patient had no symptoms and felt well again. Doses were between 200 and 400mcg I have read.

Some people do need higher doses than others. Some also have Thyroid Hormone Resistance which means they may need T3 only (liothyronine).

On this forum we have found that neither doctors nor endocrinologists really know best how to bring good health back to patients as all their interest is upon the TSH alone. TSH means thyroid stimulating hormone and it is from the pituitary gland and when the gland is failing, for some reason, it starts to increase the TSH to try to keep the thyroid gland working. The worst is they even do this after we are given levothyroxine or NDT or T3/T4 combination.

If we feel well and symptom-free it is because the Free T4 and Free T3 are in the upper part of the ranges and TSH low or very low and NO we will not become hyperthyroid as most seem to have been told (worldwide) or that we will get heart disease etc. So millions have their doses adjusted up/down according to the state of the TSH whilst ignoring the frees altogether.

If you are well on 200mcg of T4 insist you stay on it.

When your blood tests are due always make the very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This procedure helps to keep our TSH at its highest as doctors are apt to adjust doses according to the TSH which is wrong.

You need a Full Thyroid Function Test and if you are in the UK they will rarely do this but we have two private labs who will do home pin-prick blood tests.

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if you've not had antibodies tested.

B12, Vit D, iron, ferritin and folate as all have to be optimal. i.e. TSH 1 or lower, FT4 and FT3 in the upper part of the ranges.

If antibodies are present it means you have an Autoimmune Thyroid Disease - called Hashimoto's and to help reduce antibodies that attack the gland, going gluten-free can help.

Always get a print-out of your results with the ranges. Ranges are important as it enables members to respond to queries if you want to post your results.

[Jc46 in reply to shaws]

I’m so happy got your reply and you took time to send it. It’s so hard and I’m learning from here daily. Thanks

[shaws Administrator in reply to Jc46]

It is surprising what we can do with the information/help from others. TUK helped me before the forum was started and once we find out that we aren't alone in our experiences of not seemingly improving, we want to know but doctors do not know the answer - except to tell us 'we're fine as blood tests are o.k. Some say our symptoms are nothing to do with hypo but they know none in the first place.

[Angel_of_the_North]

200mcg isn't particularly high. Years ago (before TSH obsession) that would have been considered a conservative dose. You need to be adequately medicated to get free T4 and free T3 into the top quarters of their ranges and remove symptoms or "the long-term consequences" could be heart problems and brain fog from undermedication, as well as loss of quality of life.