According to my GP, my latest blood results show I am taking too much thyroxine. He wanted me to lower the dose, I said no. There is also a note on my file from Endo saying not to change the dose (it took us forever to find a dose I could function on!)
Results are TSH <0.03mu/L (range 0.35-5.5)
free T4 26.8pmol/L (range 10.3-22.7)
free T3 7.2pmol/L (range3.5-6.5)
The 2 lots of bloods last year showed similar results.
He says it shows hyper, which I said I have no hyper symptoms and still feel hypo (my diagnosis is Hashimotos with multinodular goitre). We had a bit of a row when I told him that he was just going by numbers, he hadn't asked me how I feel. I also may have told him that they didn't know what my "normal" range was!
I had an MRI last Sept for suspected MS, and it also showed up what the radiographer said was empty sellar, but the neurologist has since said is an enlarged pituitary. Today I asked for a referral back to my Endo to get it all looked at and see if the pituitary issue was affecting the thyroid, and the GP refused me a referral!!!! I'm fuming!!
Having a quick Google, it seems I also have quite a few symptoms of Cushings (but I know they happen with other conditions too, most of them thyroid related) but it would stack up with a pituitary problem. The Google page I read also suggested my results indicate hyper, but if that's the case, why do I still feel so bad all the time?!
Sorry for the rant. Thanks for any ideas or advice!
Written by
Penny_babe2001
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My next step would be to put a letter together detailing your dissatisfaction with how the appt went and to ask for a full explination as to why he has refused a referral for further consulation/investigations with your endo. I would also state that you still have possible outstanding issues with your pituitary glade which you would like further investigated, and you feel the best way forward for this would be a referral back to your endo. You might also want to state that you are not comfortable with him ignoring/going against your endo's advise and trying to reduce your medication on blood results alone.
If you do go down this route then you must be polite, but firm, and you must p.p. a copy to the practise manager. Ask for the letter to be added to your medical records and also ask for a meeting to discuss these issues with the main doctor at the surgery and for the practise manager to be present.
You do not have to put up with this treatment but unfortunately you will now have to fight tooth and nail for the correct treatment.
Thanks for replying. I'll write a letter when I'm calmer. Still really angry.
So on that ground I was right to refuse a dose change. For now, anyway. I have no idea how long the pituitary has been like that, but if it's been a while it might explain a few things.
The GP kept saying there was nothing on file about the pituitary, and that was all he was focussing on. It says about the empty sellar on the preliminary MRI report (also kept saying the MRI hadn't been officially reported on yet - from Sept!!) so it didn't matter what the neurologist said during our appointment; if he hadn't written it down, it didn't exist. Grrr!
The GP hadn't read my file beforehand, so didn't see the note from the Endo (which is kinda scary, given he was trying to change doses) and the last letter from the endo also clearly says that I can go back to him any time (with referral).
Why don't they get that it's not cos we enjoy spending time at the hospital, it's cos we want to feel well. I'm so fed up with feeling like this now. It's been years!!
I think it's more about money as I actually asked someone at my local hosp today about charges when referrals are made.
You are wise to wait until you are calm before writting the letter and you might want to run it past someone to make sure that you have gotten your point across in a polite, clear and responsible way.
Try doing some research on an enlarge pituitary glade and see what comes up - you might be able to make more sense of your symptoms and results if you find the right reports/documents.
Make sure you put the endo's remark about reffering you again if needed.
Good luck with it and I hope you get your referral at the end of it.
I had a search on enlarged pituitary, but everything was about tumours, and that kind of scared me a bit! It was that that lead me to the cushings link as well. It's all so confusing, all so contradicting and al so bloomin complicated!!
I know that feeling but you have got to look at it this way: If your consultant had any suspicions regarding cancer and your pituitary then he would have said something.
I really do think your best bet is to wear your GP down for a referral and if he doesn't comply after your first letter then a more stongly worded letter would be in order (all letters also need to be sent to the practise manager) and if this does not work then a letter to your endo asking for advise would be in order.
I agree with wearing the GP down but I'd hold fire on the letter for now and make a repeat appointment - a longer one if you can or when GP likely to have more time (end of morning surgery perhaps). It's about getting across to the GP that they deal with you properly or you keep coming back. You need more explanation and they need the time to provide it. Good luck.
I think we've locked horns now and he wasn't best pleased with having me tell him his job (or perceived to be telling him). I really don't get it as last year the same GP referred me for an MRI for MS, no questions asked!
I need to check if he is a locum still, and maybe make an appointment with one of the permanent GPs in the practise.
Just about to phone hospital and chase neurology myself and see if he will send an e-mail to the practise suggesting I see Endo.
You should phone the hospital and ask for an appointment with the Endo as you have already been referred previously. I think you were right to refuse.
Doctors have been told that the TSH is the way to treat patients regardless, especially as you have been feeling well on your present dose. If you go to the date January 25, 2002 to read the question re adjusting doses according to the TSH.
Our treatment team uses the TSH level only initially to help clarify a patient’s thyroid status. But during treatment, we completely ignore the level. The reason is that the TSH level is totally irrelevant to normalizing the patient’s whole body metabolism and relieving his or her suffering. The only clinical value of the TSH level is to see the effect of a particular dose of thyroid hormone on the pituitary gland’s "thyrotroph" (TSH-secreting) cells.
That was a lot of reading to get through (cos once I started, I just read it all, plus other links!) Thank you, was interesting though. I so wish all doctors would read all this stuff and try to understand it all a bit more.
But even some of that seemed to contradict itself (might have been me tho, having a brain fog day and not understanding it properly).
I'm not sure the GP today was looking at the TSH. It was the T4 and T3 he was concerned about. My TSH has been suppressed at 0.03 for as long as I can remember now and nobody's mentioned it.
I've not felt well for a very long time, I've just learned to cope I think, but some days are harder than others.
a thought just occurred to me - just like they're now realising that B.P. readings can go up and down and give false results if taken when attending a GP practice (especially with some who are stressed by it), and so can fit people with a monitor for 24 hours collecting multi-readings, (as I have to have fitted on the 13th), then I wonder if anyone (NHS medical) has thought that one single blood test may not be reliable for true results of something that is auto-immune, given what we know about auto-immune disorders i.e. that many things can affect them e.g. stress, other ill health, foods, fluoride etc etc.
Those words from Dr. Lowe make sense in that light, "But during treatment, we completely ignore the level. The reason is that the TSH level is totally irrelevant to normalizing the patient’s whole body metabolism..
I don't know what the GP said to the neurologist (who he was going to write to to find out if he thought I needed to see Endo), but I've just had a letter telling me I have an endo appointment next month! Yay!!
Now just got to make sure I have al the paperwork I need to take with me to make sure I get everything about how I'm feeling across to him. Happy days!
It may only indicate hyper in an undiagnosed person. For us, on medication, many of us feel well with a very low or suppressed TSH. They take no notice of us, how we feel, and dictate according to the TSH.
If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Article by Dr Toft, of the BTA, question 6 says that some may need a suppressed TSH or the addition of some T3 to feel well.
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