Call from Doctor re T4 levels.

[Numberone1]

I have received a call from the GP office to make an appointment. The reason being that my T4 is below range at 8.5. The TSH was 7.5 but that isnt what they were calling about (0.5 to 5.5 range).

First of all, I was expecting this. I have been seeing Dr Peatfield without the GP knowing and I am on purely T3. I think I am right in understanding that if you are on only T3, your T4 levels will always be low. I am obviously going to have to come clean about this.

However, the TSH of 7.5 is unacceptable and I assume I need to take more T3. The GP didnt do a T3 test but I have had that tested privately and it has always been about three quarters up the range.

Obviously I have to make an appointment to see my GP, will have to tell them what I know about levels (annoyingly, after DR Peatfield looking at 19 years of blood test results, the T4 was often below range before me even being diagnosed hypothyroid and nobody said a thing while I was suffering and yet this doctor has picked up on low T4).

Anyway, when I see my GP I want to make sure I sound knowledgeable without sounding flustered and I want to know what to ask them to help me with without having to just use Dr Peatfields advice (I do want to know I am being regularly monitored).

Because the T4 is low because of taking T3, do you think I should be taking more T3 to bring the TSH down? Should I add 25mcg of T4 to level things out?....I had already started to think this after my last private blood test.

Will my GP find the fact I have been seeing Peatfield unacceptable? The reason I went to the GP recently is because I had a problem with breathing and he did numerous testing including ECG, chest xray etc. He put me on anti biotics, anti histamine etc etc. Is he going to start blaming the T3 on my problem with breathing.

On my records (which he originally referred to) I look a nutter. I had huge anxiety issues verging on agoraphobia, panic attacks etc etc. These were all resolved by being diagnosed hypothyroid and most definitely after being treated with T3 (T4 was not being absorbed with intense fibromyalgic problems and puffiness etc).

Basically, should I be asking him to look into other thyroid issues? Pituitary issues etc etc (because the TSH is still above range while taking T3) and how do I broach the subject with him that I have seen Peatfield and on un prescribed T3 bought on the internet.

Huge questions here....sorry. But I appreciate your advice.

[Hidden]

Depends on whether you want to keep your GP 'on side' considering he's obviously failed you in the past. The bottom line is that Dr P knows far more than any GP about thyroid matters. Do you really want a possible lecture about buying dangerous drugs on the internet and seeing a 'quack' ? Or are you happy to keep quiet about that?

[Numberone1 in reply to Hidden]

I suppose the answer here is, how do I deal with the low T4 question though or do I just pretend Im doing what the GP says.

[Hidden in reply to Numberone1]

Probably easier to come clean but be vague about who you're seeing, just say it's someone with huge experience of thyroid disorders and leave it at that. At the end of the day they're general practitioners who follow guidelines and the chances are they know very little about the thyroid.

If you're feeling particularly confrontational then you could moan about how the NHS leaves thyroid sufferers very ill by their useless guidelines!!

Holds hand up to being grumpy with new GP who I haven't seen but commented in a telephone appointment that she wanted on my blood test results that Endo requested. I made it crystal clear that I'm not interested in numbers that left me ill and that I would continue to go by how I felt.

[Numberone1 in reply to Hidden]

I definitely will say that it would appear that the NHS failed me for 19 years by not diagnosing me. I was only diagnosed, even tested again, when I had a loss of vision and then complained also that I couldnt lose weight even though I have a type 1 diabetic daughter who we have to eat very healthily with. Only then did the result come back with a high TSH. When I saw Dr P and I got copies of my blood tests, did I see that the below range or bottom of range T4 had been an issue for so long. I wont care if I tell them that. My life and that of my family was affected by not having the right diagnosis for many years. I may feel better now but I still have the weight issues so I definitely want to get this balanced out better so dont want to upset him too much.

[shaws Administrator]

If your GP doesn't know you're on T3, he may well be anxious about your blood test results. I think you need more T3 as you suggest. This is a link re T3 which may be helpful. This is an extract:-

For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

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

[Juliet]

I wouldn't bother asking about pituitary issues if your TSH is 7.5.

The fact that your TSH is elevated means that your pituitary gland is working and is responding to the low T4 (if it was a pituitary problem, your TSH would be low).

Perhaps you just need more thyroid hormone. Have you considered adding some T4 or are you happy with T3 only treatment?

One way around it would be that your GP would assume you are hypothyroid (based on your current results) and would put you on thyroxine (which you could take with the T3).

[Numberone1 in reply to Juliet]

They already prescribe 200mcg of Eltroxin which was my big problem hence why I ended up seeing Dr P. I am tempted to take a small amount of T4 with the T3 and see if that helps. However, the Eltroxin and other brands were not converting so I dont want to end up having the problems I had with that in the first place. I have some 25mcg of T4 so very tempting to just try it out and see. I have a call in to Dr P to just check out what I should do before visiting Doctor.

Obviously the best option would probably be Natural Dessicated Thyroid but not sure if Im creating more issues with that.

[Numberone1 in reply to Numberone1]

Thank you by the way with regard to the pituitary issue. That saves me asking a stupid question.

[eeng]

Have you thought of asking Dr Peatfield what to do? You could go along to your doctor, say nothing, he will prescribe 25-50mcg of levothyroxine. Then when you next see Dr P he can tell you whether to take it or not.

[Numberone1]

The GP thinks I am taking 200mcg of Thyroxine. I never told them Im not doing that anymore. I think thats why I have to tell them my change in medication. I do have a call into Dr Peatfield and just waiting to hear back.