Jumping all over the place.

[Nelb]

Can anyone comment on my test results please.

I have just had my latest results and have collected together all that I have had since I had a serious accident and long operation.

Taking 1.5 mg of levothyroxine, stable since thyroidectomy around 30 years ago except in the last 5 or 6 years when doctors have 3 times reduced it to 1.25 saying I was hyper then raised it again to 1.5 when I inevitably became hypo.

Operation was 5th March. I was not hyper a month before but don't have the results and have moved surgeries.

7th March T4 22. TSH 0.006 Dose reduced to 1mg

4th April. T4 14.49 TSH 18.28. Dose increased to 1.25

18th June T4 20.04. TSH 9.22. Dose unchanged

19th July. T4 22.5. TSH 0.834. Dose unchanged. Next test in 2 weeks

[gabkad]

How do you feel?

They are not testing fT3 and maybe they should. That way they can tell what your body is doing with the T4.

[Nelb in reply to gabkad]

I don't feel too bad thanks now that the weather has cooled a lot in the UK. I have a condition which makes me feel dreadful in the heat. I'm tired but that could be the other stuff, not the thyroid. I do feel a bit anxious though I'm trying not to be.

[gabkad in reply to Nelb]

Has there been any change in when or how you take the medication? Have you switched from evening to morning or vice versa?

[Nelb in reply to gabkad]

No. I take it first thing when I wake up.

[gabkad in reply to Nelb]

Is it possible that your digestion is better now than it was the last time you had the test done? i.e. other aspects of your nutritional status have improved?

Has your doctor ever ordered testing for ferritin, b12 etc.?

[Nelb in reply to gabkad]

I wouldn't say there was any difference in my digestion though for the two weeks while I was in hospital and for a month afterwards I wasn't eating my normal diet, being unable to walk and choose for myself.

This latest test included Serum vitamin B12: 363 pg/ml [191.0 - 693.0], Serum Folate level : 9.4 ng/ml [4.6 - 18.7], and Serum ferritin level: 108 ng/ml [13.0 - 150.0]

[gabkad in reply to Nelb]

Hospitalizations are extremely stressful for the body, so it makes sense that you are probably utilizing the T4 better than you did before. The serum ferritin, if you have not been taking iron supplementation, can reflect inflammation.

[Nelb in reply to gabkad]

The only supplement I take is Vit D. A marker for inflammation would be explained by my other conditions including osteoarthritis.

[gabkad in reply to Nelb]

Why is the doctor testing so frequently? Do you have any insight into this?

[Nelb in reply to gabkad]

Following the thyrotoxicosis in hospital which has caused actual heart damage they are worried about it happening again whereas I am equally worried about being hypo which always makes me feel so ill. Well perhaps not equally, the heart thing was very frightening at the time .

[gabkad in reply to Nelb]

Now I remember. When you posted about that and also said that you don't have a thyroid, I was wondering how on earth anyone can get thyrotoxicosis when taking T4 in known dose strengths.

Is it possible that while in hospital, you were given the wrong medication or dose by the pharmacy? Or that there was something wrong with the tablets provided by the pharmacy in the hospital? I'm assuming, as it is done here, that the hospital provides the medications for the patient and they don't want the patient bringing their own meds in with them.

When you were writing about that 'event' it made me also wonder if there is a small piece of 'active tissue' someplace along the path along which the thyroid tissue migrates in the embryo/fetus.

Otherwise, it made no sense to me what happened.

Ironic because if anything, the TSH goes down during periods of physical stress (surgery) rather than up and a person's natural hormone production goes down.

Over here there's a 112 mcg T4 tablet but I think maybe in the UK there's only 100, 125, 150?

[Nelb in reply to gabkad]

Sorry I've been too busy with family problems to get my wits together to reply.

I asked my daughter about medications and she said she took them into the hospital that night. Medications from home get noted and locked into a box by the bed and only used if they don't have that medication available. She however thinks they didn't give thyroxine to me on the day of the operation but she was rushing hither and hither, one day over her baby due date, and isn't sure. I asked if I was lucid enough to talk medication and she said, 'no, you were right out of it'. It took ambulance staff 2 hours to get me out of the house sucking on nitrous oxide all the while and that's about all I remember until I went into AF 2 nights later and it all kicked off. I had just been taking what I was given with no clue what.

My thyroid was almost completely cut out 30 years ago so I suppose it is possible that the tiny bit left jumped into life though I have always been told that it had never functioned after the thyroidectomy, conclusion reached after I collapsed a fortnight later and began to be monitored.

I think you are right that 112mcg tablets are not prescribed here.

I suppose I will never know why it happened but I do know that right up until the accident I was in good health, helping decorate the baby's room, no sign of anything wrong.

Thanks for helping.

[gabkad in reply to Nelb]

2 hours sucking on nitrous oxide means all your body stores of B12 were destroyed. I hope you are taking plenty to replenish.

It's possible that the tiny bit of tissue left may have churned out excess thyroid hormone for whatever mysterious reason. That's one thing that really needs to be assessed in this situation.

My friend who is an internist had to have her thyroid removed due to hot nodules. She is taking 150 mcg T4 in order to provide suppression just in case there are any rogue cells along the path of the thyroid migration from where it starts in the embryo. She says, yes, she is a bit on the hyper side but suppression is more important.

Since the T4 tablets in UK are flat (unlike here where they are biconvex and can't be cut in half evenly) you could ask the GP to prescribe 100 and 25 and cut the 25s in half.

I will ask her when I see her soon about what could have happened to you. She knows her stuff. If anaesthetic or the nitrous oxide or whatever could have suddenly stimulated release of stored T4 and rapid metabolism into T3. It's interesting and mysterious.

[Clutter in reply to Nelb]

Nel, if you have the lab ref ranges to your results (the figures in brackets after your results) it helps members to interpret and comment. Your FT4 is probably at the top of its range which is fine and your TSH looks good now. You don't look to be over or undermedicated. Can you persuade your GP to lean on the lab and test FT3 at your next blood draw?

[Nelb in reply to Clutter]

In my ignorance I thought they were the same for everybody. They are TSH 0.27 - 4.2 and T4 12.0 - 22.0

I already asked if I could have FT3 and was told no. Perhaps it is not possible on the NHS. I must look up the cost of having it done privately.

Thanks for the interpretation. Makes me feel a bit less anxious

[Clutter in reply to Nelb]

Nel, There have been discussions about standardising the thyroid ranges internationally. I'll be glad if they get around to doing it in the UK.

Your FT4 is a gnat's above range and your TSH is below range but not suppressed. Neither are a problem unless your doctor makes it one by dosing you according to the lab range. Hopefully your GP will have realised how inappropriate that is for you (and everyone else).

NHS labs often decline to test FT3 unless TSH is suppressed <0.04 unless the requesting doctor is very insistent. You can order private tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

[helvella Administrator in reply to Clutter]

Standardised ranges would be great - but only if they are achieved using scrupulously proper techniques. It is better to have multiple different ranges and the confusion they cause, than a single standardised range that hides issues.

Rod

[Clutter in reply to helvella]

Aargh, Rod. We all know the lowest bid will win and quality will be sacrificed to cost.

[helvella Administrator in reply to Clutter]

It was a bit of the "Be Careful What You Wish For" warning!

Rod

[Nelb in reply to Clutter]

Thank you Clutter and everyone for your helpful and reassuring replies.

[Nelb in reply to Clutter]

Thanks for that link. I will see what the results are after the next test and get 'private ' tests done if they try to reduce my dose again.

[shaws]

When doctors adjust your medication due to only to the TSH result, they can mess up the patients metabolism a lot and cause them more problems.

This is an explanation - an excerpt:-

"Dr. Lowe: First I suggest that you ask your doctor to question the scientific basis of the endocrinologists’ notion of "fine tuning" by TSH and thyroid hormone levels. If he does, he’ll learn that the changes he sees in your TSH and thyroid hormone levels are probably nothing more than natural variations in the levels. He would probably see the same variations if he always kept your thyroid hormone dose the same. I’ll briefly review some of the evidence that your doctor should read."

web.archive.org/web/2010103...

They just don't know what they are doing and think it is correct. It is o.k. to have a low or even a suppressed TSH as long as you feel o.k.

[Nelb in reply to shaws]

Thank you so much. I was years in a nurse practitioner practice, not my choice - they bought out the doctor surgery. They were all very nice but got excited every time I had a test and altered my prescription against my wishes. A locum doctor once reversed their reduction in my prescription saying they should have asked me how I felt, which was perfectly well.

I am worried that they will reduce my dosage if the next test shows raised FT4. What would be the best time of day to have the test done if levels jiggle around during the day?

[shaws in reply to Nelb]

The best time of day is the earliest possible appointment as that's when the TSH is highest. When they adjust according to the TSH it's wrong but they fantasize that it should be kept within a level.

If you don't want to reduce if they suggest it, refuse and say you are not reducing as you feel o.k. The locum doctor was the most sensible as it is 'how you feel' once you are on medication, to either raise or lower.

I forgot to say - don't take your medication on the morning of your blood test, take it afterwards. If you've eaten, leave 2 hours either side of taking levo. If you take levo at bedtime, miss this dose and take after blood test.

[Nelb in reply to shaws]

Thanks for the advice. What is in fact the best time to take Levo? I used to take it at bedtime but have a feeling someone said I should take it first thing?

[shaws in reply to Nelb]

Most people take their levo first thing on wakening with one glass of water and don't eat for around 1 hour as food can interfere with the uptake.

Some people prefer to take it at bedtime so it is what is more convenient for you. As long as you leave 2 hours after eating.