Occupational health: Hi guys, so after being off... - Thyroid UK

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Rosie2m profile image
15 Replies

Hi guys, so after being off work since October poorly, I am trying to return to work next week. I had a call from my works occ health lady today and can I just say she knows more about thyroid conditions than my bloody GP! I have been started on Levothyroxine 5 and a half weeks ago and my GP told me last Monday that she point blank will NOT retest my thyroid until I have finished 3 months on 50mcg and that given my tsh of 10.35 that 50mcg dose is very substantial (even tho I still have lots of symptoms) 🙄 needless to say the occ health lady was not impressed and very politely advised me to see another gp for a retest after 6-8weeks. How is it in this day and age that everyone knows more than the drs? I’m aware that my symptoms may still improve more on the 50mcg but based on the fact that I’m overweight at 85kg I don’t think a dose of 50mcg is sufficient, I could be wrong as I’m new to all of this but I can’t help but be disappointed in my dr who is so blasé about the whole thing like I’m making it all up!

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Rosie2m
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greygoose profile image
greygoose

How is it in this day and age that everyone knows more than the drs?

Because only doctors have been to med school and indoctrinated with false information. The rest of us live in the real world.

helvella profile image
helvellaAdministratorThyroid UK in reply to greygoose

Seems also to be that so many of the "official" medical sites are regurgitations of previous official information.

We keep seeing statements taken from these official sources which are just plain wrong. Start at the trivial end - "take levothyroxine in the morning before breakfast". Of course, no acknowledgement that it is perfectly reasonable to take it at bed-time. Nor any clear information about eating breakfast after taking the tablet(s) and the impact that can have.

Inevitably, these official sites are the ones the doctors go to because they feel the need to be backed up by such sites rather than random internet searches.

greygoose profile image
greygoose in reply to helvella

Very true. And, understandable as they have no real knowledge themselves. They rapidly find themselves out of their depth.

helvella profile image
helvellaAdministratorThyroid UK

The patient information for levothyroxine says every three to four weeks!

Patient Information Leaflet for Actavis levothyroxine:

Adults

The recommended starting dose is 50 - 100 micrograms every day. Your doctor may increase the dose you take every 3 - 4 weeks by 50 micrograms until your thyroxine levels are correct. Your final daily dose may be up to 100 - 200 micrograms daily.

Patients over 50 years of age

The recommended starting dose will be no more than 50 micrograms every day. The dose may then be increased by 50 micrograms every 3 - 4 weeks until your thyroxine levels are correct. Your final daily dose will be between 50 - 200 micrograms daily.

Patients over 50 years with heart problems

The recommended starting dose will be 25 micrograms every day or 50 micrograms every other day. The dose may be increased by 25 micrograms every 4 weeks until your thyroxine levels are correct. Your final daily dose will usually be between 50 - 200 micrograms daily.

medicines.org.uk/emc/files/...

It is written as the permissive "doctor may" rather than compulsory "doctor must". But well worth arguing.

It is diabolical to knowingly leave patients incorrectly dosed. (Not knowing because they haven't tested compounds the issue rather than exonerates.)

My own TSH has never been that high. The almost brand-new NICE guidelines suggest a higher starting dose!

Rosie2m profile image
Rosie2m in reply to helvella

Thankyou! I’ll get a copy of that leaflet. I’m going to give them a call once I’ve taken the 6weeks worth and get an appt with a different doctor and explain to them that I’m not happy with it! Hopefully I’ll survive at work lol! Although working in a hospital pharmacy I will endeavour to prize as much info from the pharmacists also so I can go armed to my next appt. x

helvella profile image
helvellaAdministratorThyroid UK in reply to Rosie2m

Just in case, the new NICE Guidelines are here:

nice.org.uk/guidance/ng145

It is well worth reading - however much we might disagree with at least parts of it.

(My levothyroxine comes in two packs. One is endorsed about leaving time between taking it and breakfast. The other isn't. :-) )

Rosie2m profile image
Rosie2m in reply to helvella

Reading the new guidelines it looks like I should’ve been started on a higher dose and that the dr is correct with waiting 3months? I find all this confusing x

helvella profile image
helvellaAdministratorThyroid UK in reply to Rosie2m

I agree that it is both inconsistent and confusing.

Imagine that you will, eventually, need a dose of 125 micrograms (number plucked out of the air as a dicussion point).

If you started on 25, then several weeks, 50, several weeks, 75, several weeks, 100, several weeks, 125, that is a very long time on an inadequate dose. And if those weeks become months, it could be years! However, starting straight on 125 would be a bit of a shock to the system!

My approach would be to start fairly low, say 50?, but allow rapid raises up to about 100. Then be more cautious. Maybe even adjust by 12.5 micrograms at a time.

When I say "rapid", I do mean that you might try for a few days at 50. If all is well, and especially if you feel you have run out before the next dose, raise to 75. (The patient could do this without needing to go back to the doctor if properly advised and counselled.)

Both extremes - either starting on too high a dose or too slow raising from initial dose - are bad. The only person who knows how they are doing is the patient.

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin and B12 tested yet?

Couldn't see any vitamin results in previous posts

If not ask that these are done too

Rosie2m profile image
Rosie2m in reply to SlowDragon

No I haven’t, I’ve just ordered a test from thriva as I have a Vodafone offer for 55% off so I’m hoping to at least have a baseline to go by. I intend to request all of the above when they finally allow me to have one, whether they will do it or not is another matter. I still have issues with my mouth and tongue but the dr has just fobbed me off and said it could be the new tablets or the thyroid condition and should improve in time... she really has no idea what it is and is just hoping it will go away! X

SlowDragon profile image
SlowDragonAdministrator in reply to Rosie2m

Sounds typical

Daily vitamin C can help support adrenals and won't affect testing vitamin levels

McPammy profile image
McPammy in reply to Rosie2m

When I had issues with my tongue. It was burning all the time. I found out that I had B12 and ferritin deficiency’s. It’s now sorted with B12 injections and Ferris fumerate tablets ongoing. The burning tongue went when my vitamins became optimal.

I also have Hashimotos.

Rosie2m profile image
Rosie2m in reply to McPammy

Thankyou McPammy I’m hoping that the test that I’m doing will point towards something vitamin based and I can address it myself as the dr is awful x

McPammy profile image
McPammy in reply to Rosie2m

Yes, they really don’t seem to have a clue. Best option is to keep trying with the NHS for blood tests and along side do your own private tests. You could always take the private tests to your Dr also.

My DR refused 5 times to check my thyroid bloods when I believed I had a thyroid issue. Eventually he did check. My TSH was 36! (range 0.35-5.56)!

Rosie2m profile image
Rosie2m in reply to McPammy

Oh wow, you must’ve felt awful! I bet your dr didn’t know what to say when it came back like that! I will do my test results and if they are bad I’ll take them to gp, she probably still won’t do anything tho. I’m thinking I’ll have to get a new dr tbh. X

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