How does it work now?: Hi everyone. I had half... - Thyroid UK

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How does it work now?

NealF profile image

Hi everyone. I had half my thyroid out at end of July, and for a few weeks felt ok. Then it hit me like a bus, and I started Levo 25mg at the start of September. My TSH the other week was around 3.5 and the levo has made little difference to that, so I know it needs work.

I have a number of symptoms which have started since this, such as palpitations, aching hands, waking up hours earlier than I used to, constant headache and what would appear floaters/pulses of light, and had eyes checked twice and nothing found, so I am also putting that down to hormones/neuro issues.

Due to see my endo at start of Nov.

Question I have, is this how it works now, I suffer until I get in to see someone? Pretty obvious I need more Levo, so do people just up it themselves?

What happens if you are symptomatic, or dont feel levels are right, but cant gain access to drugs?

Is NDT the only option?

Do many of you now self medicate yourselves?

I think there maybe a few of my hormones playing up to be honest, but just want to try and get TSH as right as I can first.

Thanks in advance.


6 Replies

Could you contact your endo, their secretary or GP and explain that you are feeling bad?

Hopefully they can then arrange a blood test and or increase in dosage.

NealF profile image
NealF in reply to Kes8

I tried that when having my eyes tested, was already booked in for endo at start of Nov, and they have just said it will be reviewed then. They cancelled the iodine scan as I said I didnt want to come off Levo.

GP looked at results last week and said your TSH is at 3.5, so we wouldnt do anything at that level, so I said thanks and knew he would be of no help anymore!

This is where I am confused, I know its no easy feat in getting this right, but if you get no help from NHS, where does everyone go or what do you do?

shaws profile image
shawsAdministrator in reply to NealF

Your doctor is wrong but most GPs believe if our TSH is 'somewhere' in the range we're fine. They forget that we either have little or no thyroid hormones so therefore we need sufficient hormone replacement.

25mcg is usually an incremental dose but they probably assume you are still producing some but obviously not sufficient so that you feel well.

You should have had a blood test every six weeks with an increase in levo. The blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test - this method helps to keep your TSH at its highest as it drops throughout the day which could mean a reduction (if you were on a higher dose).

The aim is a TSH of 1 or below. Most doctors think we'll have a heart attack or some other such nonsense. Considering that those who have had thyroid cancer and removal of gland have to have a suppressed TSH.

It just confuses me how the medical personnel are trained that the patients have to go on a study/search in order to try to recover their health

NealF profile image
NealF in reply to shaws

See I didnt do this when I had my test a month after being on Levo, I would have had my tablet in the morning on an empty stomach, and then had breakfast later in the morning before having blood taken at about 10am. So your saying I shouldnt have eaten, and I shouldnt have taken my levo that morning.

I've literally just stood in the corridor at work and it was like one of the light bulbs was going in a light. That, my headache, and thyroid are all linked Im sure!

shaws profile image
shawsAdministrator in reply to NealF

Doctors seem to be the least knowledgeable people when it comes to hypothyroid patients. They also seem to be unaware that the TSH is highest early a.m. and drops throughout the day - even if we havent' eaten - so if you had a blood test at 5 p.m. your TSH would be lower and your dose will probably be reduced 'to keep TSH in range'. We usually feel better with a TSH of 1 or lower but many doctors believe the TSH within 'range' is fine.

None of this makes sense but you can see the difference an early a.m. test and gap of 24 hours between dose and test.

Taking food - we have to wait an hour after taking hormones as the food interferes with the uptake. For that reason some prefer a bedtime dose, as long as they've last eaten, particulally protein, about 3 hours before.

If they decided bedtime dosing, they miss this dose - have the blood test and take it then and at bedtime as usual.

When hypo everything in our body is interconnected and I bet you can tick off some symptoms on this link.

It is a big learning curve but when we feel well again with energy it is worth it. I think you'll tick off one or more of the following :)

shaws profile image

The least your GP could do is test your Free T4 and Free T3 but probably wont as they believe the basic TSH reveals all, maybe with T4 thrown in.

This is the reason we need the frees done - see the following link. p.s. our body cannot function without sufficient T3 as it is the only active hormone all of our receptor cells need.

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