Recently diagnosed with Hypothyroidism in UK an... - Thyroid UK

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Recently diagnosed with Hypothyroidism in UK and looking for some advice.

dsr78 profile image
7 Replies

Hello

I've recently been diagnosed with Hypothyroidism having a TSH > 85. I have outlined my concerns below and wondered if anyone can offer any answers / advice based on their experience in the UK

Is my prescribed daily dose of 25 mg Levothyroxine too low or about right to start treatment, especially as my GP is not concerned about obtaining T3, T4 and antibody tests. Additionally, I have a history of low Iron and B12 which I thought would require treatment in tandem with the Levothyroxine.

Lastly, with the above in mind, should I have be referred to an Endocrinologist ?

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dsr78
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7 Replies
jimh111 profile image
jimh111

You shouldn't need to see an endocrinologist but a more competent GP wouldn't go amiss! Yes they should treat your B12 and iron (take iron tablets four hours or so away from levothyroxine). The GP should obtain fT4 - fT3 would be useful but the labs tend not to do it for GPs. 25 mcg is far too low in your case unless you are elderly or have a heart condition. 100 mcg is often used as a starting dose in cases like this but some doctors are not up to date with the latest thinking and start with 50 mcg and follow up in four to six weeks. This is OK, it just delays recovery a bit. However, 25 mcg is far too little for the vast majority of patients with a high TSH like yours.

I'd see your GP and say you would like more definitive treatment of your hypothyroidism and B12, iron anaemia. Perhaps take someone along with you for support. On the plus side I've noticed that fellow patients who present with high TSH levels like yours tend to respond very well to treatment. It is those of us with lower initial TSH levels that usually need more complex treatment.

Clutter profile image
Clutter

Dsr78,

There's not a lot of point testing FT4 and FT3 at this stage as TSH 85 means they are low. It's unlikely the lab will test FT3 unless TSH is suppressed <0.1 as they will be checking for hyperthyroidism not low FT3 in hypothyroid patients. Hopefully your GP will agree to test thyroid peroxidase antibodies to determine whether your hypothyroidism is autoimmune, and test FT4.

dsr78 profile image
dsr78

After a chat with one of the GP's over the telephone my Levothyroxine has be increased to 100mg.

As my Iron is not below the lower threshold - just close to it - and hemoglobin normal, I will not be treated for Iron deficiency. Regarding B12, as there is no current B12 blood test for me on file (despite having a long history of low B12), the GP will retest B12 levels when my TSH is retested in 12 weeks, but as with the Iron no treatment in the meantime.

I was originally told to have a second TSH test in 6 weeks, but this particular GP explained the lab will not retest with 12 weeks and will return as untested ?

GP showed no interest in testing T4 and to quote the GP" there is no need for an antibody test as your high TSH is obviously thyroid". Not really sure what to make of that !

Treepie profile image
Treepie

It should be 6-8 weeks to retest .Clearly trying to reduce costs of testing. Treatment would be just the same if high antibodies .

loueldhen profile image
loueldhen

Perhaps your GP was introducing your levo slowly - which may be a good idea? 6 weeks on 25 then see what TSH is, increase to 50, same again etc. I didn't start with a 100 in one go and given the effect even changing brand can have - sleepless for a week - I would guess 100 at one go could be pretty dramatic. I'm sure they will retest in 6-8 weeks if you are in the process of finding your dose. After that it will be annually. Just read @jimh111 above - perhaps I'm out of date!

dsr78 profile image
dsr78 in reply toloueldhen

I'm not quite sure what the interaction between the lab and the medical professional is, but my GP categorically stated that no TSH re-tests will be carried out under 12 weeks. His words were 'they will send it [whatever 'it' is] back untested', unless his words were empty rhetoric to scare me off ?

humanbean profile image
humanbean

Your levothyroxine (T4) has to be converted within the body to T3. T3 is the active hormone and it is low levels of this that make people suffer hypothyroid symptoms. In order for the conversion to be done efficiently you need certain nutrients to be at a good level.

The nutrients always mentioned on here are ferritin/iron, vitamin B12, vitamin D, and folate. If your ferritin is known to be low in the reference range then you need to do something about it, even if your doctor wants to ignore it. You don't need a prescription for iron supplements you can buy your own, including the ones your doctor would prescribe.

Have you considered taking iron supplements? It would be well worth knowing exactly how low your ferritin is before you start so you have a baseline value.

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