Surprised and concerned

[bestbuddy]

Hi all, if it wasn't for finding this site in recent years I would not be armed with the knowledge that I need to keep well.

Last year during a health crisis being suddenly hospitalised, the consulting physician reduced my thyroxine from 100 mcg to 75mcg. I never really felt well enough on 75 (I post on the lupus site too so I don't ever really know which condition is responsible for which symptoms) but went with the flow as usual and didn't argue with the consultant as he was trying to give me advice about my general health management and trating the bigger picture (blood pressure etc).

The senior GP agreed to testing my thyroid function in January this year (the lab would not do T4 or T3)and it came back as 1.0 (0.30 – 5.50) so he would not even consider raising my thyroxine back to 100mcg.

However, my regular GP at my surgery who I see for all my other autoimmune conditions and the one managing my endoscopy and raised liver enzymes allowed my to raise my thyroxine as a trial back to 100mcg 7 weeks ago on the proviso I was retested again within 4-6 weeks. I FELT A VAST IMPROVEMENT and booked in for a retest 10 days ago.

I took the advice on this site and only drank water on the morning of the test (could only book in at 8.40 am) (I have never gone without my thyroxine ever before....I never knew you were supposed to do this) and therefore had not had thyroxine for about 27 hours....so I was looking forward to an accurate picture of my thyroid function on the raised dosage.

Imagine my shock when the doctor said my TSH came back at less than 0.1 (0.30 – 5.50) and the lab had flagged this up as hyperthyroid and therefore over medicated. My T4 was 20.1 (11.5 – 22.7) and as a result they had not done T3!

Kindly, she said she is not alarmist as she knows I am sensible and in no way would jeopardise my health and is willing for me to carry on with 100mcg for another month.

My joint pains have decreased (a little) but my energy levels have improved, to the point I have wanted to get some exercise. I have felt less depressed and my hands are less puffy and swollen though my liver enzymes are raised.

Have I done something wrong? I know the advice is to take bloods as early as possible before any thyroxine but maybe I should have done what I normally do and take it whenever the surgery can fit me in, after all that's what I have always done and I am comparing myself with my own results?

Confused

BB

[humanbean]

You haven't done anything wrong. The recommendations made on this forum for getting thyroid function testing done are geared towards getting the highest possible TSH. If you had had the testing done later in the day your TSH would have been even lower.

Look at the graphs on page 2 of this paper :

press.endocrine.org/doi/pdf...

If you look at the one for TSH you will see that it is highest during the night, but obviously blood tests are not carried out during the night so the next best thing is to have the test done as early as possible.

Incidentally, TSH is a pituitary hormone, not a thyroid hormone. Dosing people's thyroids according to the output of a pituitary hormone keeps lots of people sick.

[bestbuddy in reply to humanbean]

Thanks for your speedy reply. I can't believe that the small increment I had would have supressed the thyroid completely especially after feeling so much better for having taken it. In fact, to be honest, I was hoping to request another small increment in another couple of months to build on and maintain the improvement.

I hope even after being retested in a month she agrees to letting me stay on 100mcg, as long as it is not going to do any long term damage.

BB

[Glynisrose]

If you feel better with a low or suppressed TSH you are not alone! My TSH is suppressed too and I will not allow my endo to reduce my meds based on blood tests alone, just say clearly' NO' and eventually the endo will back down. You may have to use the broken record method where you keep repeating that you want to stay on the level of meds you are already taking. Your endo is an ADVISOR only and cannot force you to take less meds or dictate your wellness especially by bloods alone.

[Lilian15 in reply to Glynisrose]

My GP reduced my levothyroxine and told me I must stop taking T3 (which I was buying myself) and although he could see me deteriorating before his eyes, he refused to have it put up because he said I was hyper (according to TSH). There was NO WAY he was going to back down. I had to go to another doctor before I could be treated properly. It did not matter to him how I felt. He was NOT legally obliged to put my dose back to where it was if in his opinion I was over medicated. I discussed this question with local CCG and my surgery practice manager. As a patient you can refuse any medication but as a patient you cannot demand any medication or any particular dose of that medication. I did suggest you produce the guidelines you were referring to when you said they must give you the dose back. I have only found guidelines to say doctors are not obliged to give a patient anything that they ask for if in their clinical opinion it is not required, which surely means the dosage too. That your endo backed down is your good fortunate - he is not obliged to.

[Glynisrose in reply to Lilian15]

Nobody is saying that you can demand a particular medication but at least in the UK you can stop any doctor from reducing your meds, after all its only his opinion. Suppressed TSH does NOT make you hyper symptoms do. If you don't have hyper symptoms there is no need to reduce your meds.

[Lilian15 in reply to Glynisrose]

That is precisely it - it is his opinion. And doctors can do anything if it is in their opinion it is best for you. You know suppressed TSH does NOT make you hyper - I KNOW it does not make me hyper but there are many, in fact from what I have heard from all these people still suffering, the majority of doctors and endos do think it. The GMC did not keep making Dr. Skinner prove his fitness to practice because he did not give patients enough, but because in their opinion he gave them too much and when it was not necessary. So NO you are NOT legally entitled to get the same dose if in the doctors opinion it is not necessary and you are unlucky enough not to be able to persuade (educate) him. I don't say one should not try and change the doctors opinion, but it is wrong to tell people that they are entitled to when they are not.

[Glynisrose in reply to Lilian15]

You simply keep repeating that your opinion differs and keep going until the doctor or endo backs down. Its YOURhealth and by gum you have to fight for it!

[Lilian15 in reply to Glynisrose]

I agree with that. If we don't fight for our health who will.

[Rosy_Holly]

I have not felt well since the Autumn of last year when my TSH was low. My Dr thought I didn't meds for my thyroid anymore and started withdrawing my thyroxine. (put 0n 50mcg) In Jan I have a blood test and the TSH was high. Started upping my dose unitl I reached 75mcg about Easter when it was low again. However my condition worsened I was so tired, anxious. Blood pressure all over the place. I also have a heart condition and was taken to A & E by Ambulance on 6 different occasions this year. On the advice of A & E I saw an Endo (on the Thyroid UK list). He did not think I had a thyroid problem, but it was being affected by whatever is causing my problems. I quote his letter to my doctor, (I was sent a copy) "I think there only two other endocrine diagnoses to either confirm or exclude in her case: a phaeochromocytoma and carcinoid syndrome. To this end, I would be grateful if you could organise a 24 hour urine collection for metanephrines and 5HIAA." I started my urine collection this morning. I must say for the last couple of weeks I have never slept better and feel stronger everyday. I have kept everything quiet and drugs and food on same dose's. However my beta blocker has been changed I was taking Cardicor and only needing 1.25 a week! To keep everything steady my doctor prescribed me Atenolol Oral Solution (syrup) which I take every evening, just 3 drops - its like licking the spoon - as my GP said. The conditions mentioned are pretty rare, so it could be worth a mention to your Doctor. I was fortunate to have a friend with a sister who has the condition (who happens to be a Doctor ) she has been a great help. Hope this helps - I am happy for you to PM me.

[bestbuddy]

Thanks for the advice but when I was hospitalised last year they ran many tests including the ones you mentioned above and as far as I know they were negative.

Hope you have a resolution soon x

[1133]

When are these damned doctors going to stop treating the numbers and start treating the patient! OF COURSE TSH is going to go low when taking thyroxine! This is why doctors need to look past the numbers. It's the stupidest, foulest thing in the world, to take a patient who is feeling well on 100 mcg of thyroxine and reduce their dosage based on NUMBERS rather than symptoms. Stupid stupid doctors. I'm so tired of them making us sick and sicker. I'm very happy for you that your regular GP is on your side. It is shameful that the other docs reduced your meds, and even worse that they left you feeling like YOU were the one who did something wrong, when it was THEM.

For a long time, I was furious with myself for trusting doctors... who ruined my health and my life. But with help, I began to understand that being angry with myself was worsening my conditions... and that I had, in fact, done nothing wrong - we go to doctors because it is supposed to be THEIR JOB to do right by us. They take an oath to do no harm, right? They've had years and years of medical training and experience, they SHOULD know how to help us, right? Are we wrong to trust them? No, we shouldn't be wrong to trust them to do their jobs. We take a "sick" car to a mechanic, because it's the mechanic's JOB to fix the car. We take a broken computer to a computer tech because it's their job to fix the computer. It's the way the world works. So why would we ever think that we couldn't take our "sick" bodies to doctors, because it's THEIR JOB to fix us up?

But most of them can't do their jobs right, because their training is based on wrong assumptions, pharmaceutical agendas, and the new research takes, on average 17 years to be adopted by the doctors we see. So we go to doctors because we think - as we should - that it is their job to help us fix our broken bodies. And they break us worse. My goodness, how this breaks down our ability to trust. (I'm in therapy now, to help me trust again!)

So we have to take responsibility for our own health.

Here's the thing: Trust yourself. They don't get to jump into your body and feel what you're feeling. They don't have to care, like you have to care. They look at numbers, tune out the patients' complaints, regardless of how serious they are, and play god with our hormones. Don't let them. Trust yourself and how YOU feel. Know that you didn't do anything wrong.

[faith63]

Raised liver enzymes can be from hyperthyroid or t4 toxicity, if you don't convert your t4 to t3. You may have a very low ft3. I had that when i was overmedictaed on t3. Are you doing diet changes and checking for food sensitivities? How do you address your poor immune system? I would check out Dr. Mark Hyman's website for autoimmune information and how to turn your health around.

[bestbuddy in reply to faith63]

I am coeliac and also I am being treated for UCTD (undifferentiated connective tissue disease / sjogrens) a cousin of lupus, hence my posting on the lupus forum too.

I take B12, vitamin D, high strength rose hip and a multi vitamin and MSM along with Plaquenil for my joints. I try to eat salads and vegetables everyday with about 5 portions of fruit too. I eat red meat occasionally but eat salmon or chicken daily.

What I don't understand is how I can go from being 1.0 to less than 0.1 with only a 25mcg increase yet my T4 is still 20.1?

[faith63]

I din't know you were already on thyroid meds, when those labs were taken...that makes a big difference in my answer..sorry. It just looks like you don't convert well, which is common with autoimmune disease and inflammation. My TSH is 0.003, last i checked. Your ft4 is high in range, which would lower TSH. They are saying that autoimmune disease may be triggered by food sensitivities, gut issues..Leaky Gut etc..check out the website. Autoimmune disease can often go into remission, with the right diet and supplements.