Question regarding tests done at Endo appointment

[blackqueen65]

I recently had an appointment with an Endo and afterwards had some blood tests done. It was around 11.30am non fasting. I have received a copy letter from her to my GP saying she has tested my Pituitary, Adrenal and Pheochromocytoma along with the usual Vit D, Bone, Thyroid etc.

My question is could a standard blood test rule out Pituitary/Adrenal problems, as I thought it would need provocative testing. I thought even the standard test for Cortisol had to be done after fasting and as close to 8am in the morning as possible, even to test for Cushings. I did phone her secretary and point this out but she said the tests done were baseline tests to see if further dynamic testing is needed. Anyone know if this is right?

Thanks in advance, Shaz

[Redditch]

Hi Shaz

The simple answer is that blood tests are not the best way to conclude anything at all. You need to read up on the clinical signs and see if you have those.

Why were you with the endo and why did he/she test for those issues? Are they looking for the causes of your thyroid issue or the reasons why your treatment isn't working or the possibility of another parallel condition complicating matters?

[blackqueen65 in reply to Redditch]

Hi thanks for the reply. Basically I was referred to an Endo as my GP reduced my Levo due to my TSH being 0.02. I did have some symptoms which could have been overmedication, i.e. feeling hot most of the time and pounding heartbeats and breathlessness going upstairs but in general was feeling better than the previous 18 months. Due to these symptoms and severe headaches/migraines, I agreed to lower the dose for a month and be re-tested. I felt severely ill after reducing the dose, freezing cold, like my bones had turned to ice but conversely unable to tolerate feeling warm, flitting between the two, and lots of other symptoms, mostly hypo but others as well. The doctor didn't want to raise my dose back up but agreed whilst I was waiting for the Endo appointment.

The Endo said my thyroid was overmedicated and my doctor was right to reduce my dose, she said FT4 and FT3 are irrelevant (mine are low normal with FT3 barely in range) but she claims they fluctuate all the time so don't mean anything. She said she would run all the Pituitary/Adrenal type tests to rule out anything Endocrine as a cause of my symptoms, but it was obvious this was to humour me and not because she actually expected to find anything, and if they all came back normal I would have to accept there wasn't a problem, but that they have a good CFS clinic at the hospital I might want to go to. You can imagine how that made me feel!!

She also said that anyone given Levothyroxine would feel better regardless of whether they have hypothyroidism as it raises the metabolic rate, so the fact that I felt so ill after reducing the dose just means I had got used to feeling more hyper and basically I will perceive that I feel worse, eh? We are all obviously stupid and incapable of knowing whether we feel well or not. I didn't actually feel well to start with, just not as bad as I did with the reduced dose so I wanted to rule out other causes. I went to see another GP in the practice just before my Endo appointment and even he said he thought they would be doing a TRH test due to the low TSH with low T3 and T4 but it would appear she doesn't think any extra testing is necessary.

Sorry for the rant, I just feel so frustrated as do many people.

Shaz

[Heloise in reply to blackqueen65]

You deserve to rant after all those contradictions. Your TSH also fluctuates during the day. We've been saying NOT to take any T4 before blood testing and do it early in the a.m. so as not to have a false reading. Your T3 barely in range means you will have symptoms of low thyroid but "this test doesn't mean anything" and yet the TSH is "of major importance". I'm convinced everyone who is still problematic should add T3. Since the NHS doesn't even test for it, it won't make any difference to them.

[blackqueen65 in reply to Heloise]

Thanks Heloise, yeah it's very frustrating, the doctors and Endo's can't even agree between themselves. In Professor Toft's book he mentions measuring T4 as well as TSH yet she claims it means nothing. If T4 and T3 mean nothing then how would she medicate someone with secondary hypothyroidism, she couldn't rely on the precious TSH test then.

The annoying thing is I chose to see her because of an article in the BMJ where she'd diagnosed a pituitary problem in someone who'd been sent off with the CFS diagnosis by two other Endo's, one at another Manchester Hospital, so she sounded thorough. But then again he'd gone private so maybe that was the difference.

[Clarebear]

Hi Shaz - sorry to hear you are having such an awful time with your GP and now endo It sounds to me as though what you actually need is some T3. Low TSH and low fT3 and fT4 might indicate a pituitary problem though, so hopefully they will be able to rule this in or out.

I have had palpitations and felt hot when my dose is definitely too low, so these can by hypo symptoms as well as hyper.

Is there any chance of you seeing a different and more up to date endo? xxx

[blackqueen65 in reply to Clarebear]

Hi Clarebear, thanks I'm coming to the same conclusion regarding T3 and intend to ask for it if the other issues are ruled out. The GP I saw in my practice last seems a lot better and more interested so I'm hoping he'll agree to refer me to someone different if I don't get anywhere with the one I saw.

My symptoms fluctuate a lot, really cold sometimes then really hot and the last few days I've felt shaky, similar to when you have stage fright but without the mental symptoms. I've been wondering if my dose is too low and whether upping it might get rid of the symptoms that seem hyper but probably aren't. I've never had a higher dose, just 125mcg since first diagnosed 11 years ago. Hopefully I'll know more when I get the test results she's done.

[Jackie]

Hi ,I have always had very low,TSH,immeasurable.My Endo treats on my T4, Ft3 and symptoms.She has tested for lots of things. I have had both the pituitary and Adrenal tests twice. She says that the only reliable method is, for Pituitary, 24 hour collection and for Adrenal, the same with a cortisone tablet ( script) at midnight and a blood test at exactly 9am. I personally would not have cortisone etc on this test as can be dangerous if not well looked after by a good doctor. If it was me, after lots of research I would see another Endo. The fact that GP referred you once, is in your favour.These are complicated issues and need the correct Endo care. This is my own opinion and what I have learnt from my own , good Endo. I hope this helps, difficult for you. However, your health is more important than upsetting any one.

Best wishes,

Jackie

[blackqueen65 in reply to Jackie]

Thanks Jackie, I'm still waiting for the results of the baseline tests she did so hopefully I'll have more idea once I get those. If she won't do any further testing I'll probably ask the doctor to refer me somewhere else but after reading lots of peoples experiences it seems your lucky if you get a good Endo. I may have to travel further away to see one. I'm determined to get to the bottom of things now so I will keep pushing.

[Jackie in reply to blackqueen65]

Yes, they are like gold, Cardio`s are even more of a lottery! I have sent you a PM.

Jackie