SeasideSusieAdministrator

Dk123

B12 is most likely elevated as I ate liver the day before!

Your Ferritin has probably been affected by eating liver too. When having any iron tests we should not eat high iron foods (or take iron tablets) in the 7 days before the test. It would be interesting to see a more accurate Ferritin result as this could possibly be the cause of your fatigue if it's low.

Dk123 in reply to SeasideSusie

I would ignore the iron as I have alpha thallesemia and this has been investigated by 2 separate private Haematologists.

The September Ferritin, B12 and Folate all look ok don’t they and were taken in the absence of any high iron foods

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Dk123 in reply to Dk123

I am most concerned with the TSH jump and the poor conversion to T3.

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pennyannie in reply to Dk123

My ferritin needs to be a lot more than just some 4% through it's range :

I find I need my ferritin to be up and around 100 for optimal conversion of Levothyroxine :

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Dk123 in reply to pennyannie

My ferritin is fine as it is, even with supplements it rarely goes much higher.

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JAmanda

Yes a little T3 could make a difference to how you feel. I'm amazed you test so frequently given you e been on the same dose of t4 for 12 years - have you not tried T3 before?

Dk123 in reply to JAmanda

I test because I keep going from one useless Endo to the next who just fob me off and are too lazy to do anything.

Never tried T3, so that’s the next thing to explore.

Any idea of the massive sudden TSH jump?

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fuchsia-pink in reply to Dk123

It's possible but tricky to get NHS lio. It can only be prescribed by an endo.

Have you had the list of T3-friendly endos from Dionne at Thyroid UK? - tukadmin@thyroiduk.org

Also worth a (separate) post asking if anyone can recommend someone near-ish to where you are - you don't need to see the nearest person but must obv be reasonably convenient. And you're right - so many are really only interested in diabetes and don't know much about thyroid ....

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Dk123 in reply to fuchsia-pink

Well I’ve requested one of the NHS Endos from the TUK list. I don’t know how long the appt will take as waiting list is long (another local hospital does not have Endo dept, so this one takes the brunt) so in the meantime I want to try it out privately. Better to spend a bit up front including the DIO2 test and trial T3 myself before I end up in NHS bureaucracy.

It’s frightening these private doctors don’t really want to lift a finger, just happy to bank over £500 over 2 appts to tell me that I’m fine and there’s nothing wrong with me!

I’m clearly spending money for a reason and investing my time. I don’t get invasive tests done for fun after all.

No other profession can get away with such incompetence, ineptitude and lack of action.

Would we accept such laziness from a lawyer, accountant or even a chef in a restaurant?!

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gabkad in reply to Dk123

Your TSH isn't jumping. It's the time of day you are having the test done.

It is highest early in the a.m. and rapidly goes down.

If you look at your cortisol levels, it's the same. The level goes

down from when you have it tested at 9 a.m. to when you had it

tested at 11 a.m. You last sample at 9 a.m. was low unless you'd

been up since 6 a.m.

The cortisol level goes up sharply when we wake up because it gets us

started for the day. The more hours that go by between when you wake

up and when you test, the lower the cortisol.

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Dk123 in reply to gabkad

Agree on cortisol levels, but the TSH just doesn’t look right to me if you ignore the third one at 11am. It’s much higher this time

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gabkad in reply to Dk123

It could be that the thyroxine tablets contain a bit less than usual.

The actual content of tablets can be +/- >10% what it states on the

label.

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Dk123 in reply to gabkad

Wow really?! Did not know that.

And conventional medicine tells us NDT has unstable and unreliable dosage!

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gabkad in reply to Dk123

Yes, the irony!

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tattybogle in reply to Dk123

Relatively lower FT4 20 than your previous 24 /23's. I would conclude this is responsible for TSH rise. Do you have any reason for the lower FT4 this time ? remember T4 has long half life so this 20 is a cumulative result of the last 2 weeks (?) absorption and usage rate not just the daily dose. Is it possible that colder weather means you've used more ?, i read that there is a seasonal rhythm in 'normal' TSH level as well as a daily one. Don't know if October is cold /late enough , for this to be relevant, just thinking aloud

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Dk123 in reply to tattybogle

This is a good point you raise, the Ft4 has indeed dropped but very marginally. I don’t know what has caused the T4 drop but I have read in several places that more thyroxine is required in winter months.

Come to think of it, I’ve also started a new job a month before bloods taken after 4 months out of work. Could the stress of the new job also be playing a part in using up more thyroxine?

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tattybogle in reply to Dk123

Given how complex the HPT axis is as a system , i'd be surprised if going from no job to new job did not have an effect. slight differences in activity levels ,eating patterns , stress levels etc etc, must all add up.

Personally i've seen so many discrepancies in blood tests results on here that i think we often place too much store on an individual result, and don't take account of all the possible causes of relatively small variations in results. Some people seem to think it's like changing cogs in a gearbox , and you should get the exact ratio out each time without fail as a result of fitting different cog. I think the whole thing is much more fluid and probably changes a lot more than we realise. I'd love to see more research examples of TSH/FT4/FT3 tests done every hour through the day and every day through a month etc . I think we 'd be surprised at the variations in results, but of course no one can realistically do this in the real world , so we get an isolated result and think it's directly related to something we've done /taken.

I reckon you have to take as much account of how you feel as the blood results. Given all the variables and slight inaccuracies i see bloods as a clue , not the absolute truth. I think we need to work out our own trends of results over a long time before we can say 'that one is odd'

Waffle . waffle ... somewhere in there is a concise point .. oh well

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Dk123 in reply to tattybogle

I wholeheartedly agree that one point is never enough to tell the full story, even though doctors never explore things like trends and anomalies - though other careers like statisticians, bankers and economists do. Just because a player scored a hat trick in one game doesn’t make him world class, nor does one bad game make a word class player a failure!

I’m hoping once Apple can perfect sweat analysis (they are doing the research on it now), we can then track various bio markers throughout the day on our Apple Watches and work out what’s really going on over time.

In the meantime it would be great to see if any research exists for patients whose bloods have been taken multiple times a day for a few weeks to see how the blood levels fluctuate and compare that to a healthy individual. Would be very interesting to see that.

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tattybogle in reply to Dk123

To add to the potential variables in FT4/FT3 results , have you seen this ?

healthunlocked.com/thyroidu...

T4 and T3 do interesting things immediately after extreme exercise, and then change to the other extreme over the next 2 hrs .. in rats

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Dk123 in reply to tattybogle

Very interesting indeed!

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tattybogle in reply to Dk123

indeed like, would you rather run 2 miles to the clinic and sit on a chair for 2 hours before bloods, and get shouted at for over range T4, but be able to prove poor conversion....... or walk slowly , take them as soon as you got there and have acceptable T4 level but apparently good conversion.. (assuming we work in the same way as rats, which we might not..)

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Dk123 in reply to tattybogle

It’s strange how doctors and clinics don’t have protocols in place to control for these kind of variances.

It’s not far fetched to understand that if you roll out of bed and go to your GP surgery for a blood test it would very different to getting up early and travelling by train for an hour to have the test done in a city centre hospital.

I was once asked by an Endo to repeat a 9am cortisol test, but on the second occasion go for a run for 30 mins. My cortisol was double after the run!

Doctors are supposed to be scientists but don’t seem to care about conditions of their testing!

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tattybogle in reply to Dk123

we were looking at vets information on thyroid treatment on a post the other day and they all mention to take into account the time of dose when interpreting tests,- unlike doctors who usually haven't thought about it...... i start to think GP's and Endo's were not very good at maths or science at school.

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Dk123 in reply to tattybogle

Frightening isn't it. I don't know if they don't think its a significant difference and therefore does not matter, or whether they are indeed lazy!

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tattybogle in reply to Dk123

I don't think they do much thinking at all. strikes me that they are just not interested in thyroid. And they are encouraged to explain away any curious or unexpected results with 'check patient compliance ' coming up as first point on any professional guidance resources they look at.

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Dk123 in reply to tattybogle

Frightening, and to think I’ve paid £400 for one appointment lasting 20 mins. No other profession has such contempt for customers and acts like they are doing their customer a favour.

Sometimes I feel private doctors still behave like they are seeing NHS patients - and even on the NHS I don’t appreciate the attitude.

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tattybogle in reply to Dk123

Wow.. usually when i upset people i think i should apologise , not charge them £400. Have i been doing it all wrong ?

I've never had the 'pleasure' of seeing a private doctor, but after spending several months reading and researching and looking at other peoples blood results on here, i can't think of anything 'thyroid' they would be able to tell me that i could not find out for free here.....seems to me their only useful function is writing prescriptions.

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stockman27

I cant see how you are saying your a poor converter as you are at the top end of the range for T3. Your T4 is as the top end of the scale and unlike other diseases or conditions. Too much thyroxin and too little has nearly the same effects on the way you are feeling. I suspect you may already do this but to check, take your thyroxin in the morning as soon as you get up with half a glass full of water. Wait an hour and have breakfast, avoid milk , soya and calcium product until at least 4-5 hours after breakfast. You have no mentioned your adrenal glands, If its was me I would have the 200 Pounds blood test from medicheck that will give you all you want to know abut your hormone, thyriod, Vits, minerals etc and you can take it from there. I hope that helps and I hope you feel a bit better, its not easy. As general rule of thumb if you take too much thyroxin your heart rate will be too fast, ie in the 90s when your resting , if its too little then it will be in the 60s when you rest. This is a very general rule of thumb.

John C

vocalEK in reply to stockman27

On the most recent test, her FT4 was 80% through range, but FT3 was only 32%. The time before that, FT4 was 100% through range, and FT3 was 54%. I agree that her conversion needs to be better, but since that's hard to implement, some exogenous T3 would help.

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Dk123

Hi John

Thanks for the advice. I think the consensus view is the T4 is top of the range, yet T3 isn’t anywhere near the top hence poor conversion suspected.

I’ve had very comprehensive tests done to mirror the most expensive medichecks test, nothing remarkable in there. I’ve posted up the most relevant including cortisol. What else what you be interested in seeing re adrenals?