Reduction in dose: Hi new member, despite having... - Thyroid UK

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Reduction in dose

Opa87 profile image
5 Replies

Hi new member, despite having hypothyroid symptoms of feeling cold, pins and needles, hair loss, tiredness, bone pain (offered painkillers), depression (offered antidepressants), constipation (offered laxatives) and heavy periods (offered the Coil and tranexamic acid) my endo has said symptoms are not thyroid related so if they are not that I don't know what they could be. Taking 50mcg levothyroxine, diagnosed 5 years ago.

Thanks

Serum TSH 7.10 (0.2 - 4.2 mIU/L)

Serum free T4 12.9 (12.0 - 22.0 pmol/L)

Serum free T3 2.6 (3.1 - 6.8 pmol/L)

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Opa87 profile image
Opa87
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SeasideSusie profile image
SeasideSusieRemembering

Opa87 Unfortunately, you seem to have an endo who doesn't know much about hypothyroidism (he's most likely a diabetes specialist). Does he not see that you are grossly undermedicated?

Serum TSH 7.10 (0.2 - 4.2 mIU/L) - way over range

Serum free T4 12.9 (12.0 - 22.0 pmol/L) - just managed to slip into range

Serum free T3 2.6 (3.1 - 6.8 pmol/L) - under range

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo, if that is where you feel well. Ask your GP for an increase in Levo, he might know more than your endo.

**

Some of your symptoms are indicative of low nutrient levels. Have you had the following tested, if so please post the results, with reference ranges, and say if you are supplementing, with what and what dose.

Vit D

B12

Folate

Ferritin

Iron Panel and Full blood count

**

Have you always been on 50mcg Levo?

If you've been on more and had it reduced, why was that and what were your test results at the time?

Have you had thyroid antibodies tested?

Opa87 profile image
Opa87 in reply to SeasideSusie

The endo reduced my dose to 50mcg before these results came back. I was on 150mcg levothyroxine and 10mcg T3 and felt much better on this. The endo reduced it because of the TSH being below range.

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

Thyroid antibodies are in another post with the vitamin and mineral levels

Thanks

jimh111 profile image
jimh111

Dreadful. Is this person an endocrinologist, a trainee or someone just claiming to be one? Even by the restrictive blood test only dogma most endocrinologists follow they would say you are undermedicated. After five years you are in this state. Most patients with simple primary hypothyroidism (failing thyroid gland) will do OK on levothyroxine when their fT4 is around 18 to 20, this will bring their fT3 towards the middle of its reference interval where it is in healthy people. Some patients need higher fT3 levels, particluarly those of us on this forum.

I would give your GP a brief summary of the above symptoms and describe how they affect your life. Point to your blood test results and point out how bad they are, particularly fT3 which is the active hormone. I would ask for an increase to 100 mcg and to review it in a couple of months. Perhaps say that you will keep an eye out for any signs of over activity. Maybe take someone along with you for support.

The title is 'Reduction in dose'. What dose were you on, do you have blood test results from then and what was the reason for the dose reduction?

Opa87 profile image
Opa87 in reply to jimh111

The endo reduced my dose to 50mcg before these results came back. I was on 150mcg levothyroxine and 10mcg T3 and felt much better on this. The endo reduced it because of the TSH being below range.

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

Thanks

jimh111 profile image
jimh111 in reply to Opa87

A very low or suppressed TSH can in the long term lead to atrial fibrillation, but the studies have been done on patients across the board, they have never selected patients who need these doses to correct symptoms. A bit like saying having 2,000 calories a day will make you fat, some of us stay skinny. So a low TSH does warrant taking a look at the situation, but the sensible approach is to carry out a physical examination, ask about symptoms and make a clinical assesment - good old fashioned doctoring.

Even if they did want to try reducing your medication (fair enough as a trial) dropping out the L-T3 or reducing the levothyroxine by 25 mcg would be sufficient to bring your TSH back into the reference interval. Reducing your medication to 50 mcg based on these results is just spiteful and unethical.

Has this person seen your latest results and what do they say about them? If not I would put them to him and ask what he plans to do. If you get nowhere I suggest you go through your GP or if the hospital has other endocrinologists ask to be referred to another one because this one appears to have no knowledge of hypothyroidism (he states your symptoms are not hypothyroid). Be assertive but friendly and have support from a friend or relative if you feel you need it.

(I'm curious who this doctor is, could you send me his name by private message, if you feel comfortable doing so).

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