Endos - and the end of the line?

[Hiphypo]

I have just been for an annual vist to the local Endocrinolgy Dept. I was told the name of the consultant I was to see - I have never seen the same one twice - and duly had my 10 minutes.

So far so good. He asked how I was and when my reply was, "not good at all", had nothing to say except to state that my TSH was verging on suppressed (less than 1), and they could not just increase dosages willy-nilly because of the attendant risks. When I said that my GP was happy with my low TSH level because, as she told me sadly, she recognised that there was nothing more she could do for me, he looked a bit awkward. He took bloods, but did not tell me what would be tested.

Then he asked if I was ok on my current dosage of 75mg T4 and 40mcg T3 - any palpitations, etc, when I took it? He looked a little crestfallen when I assured him that I was simply fine on it, but still very far from being well enough to return to work. |

I pointed out that I had acquired other labels along the way - Fibromyalgia, CFS, Bipolar - and had attempted to follow the official advice of following a graded return to exercise together with a CBT-based course, only to have it back-fire so badly that I am only now, over a year later, starting to recover. He looked at the floor, the notes.

I then asked about what else there might be?

It was almost a case of light the blue touch paper and retire. He sat bolt upright and delivered a full-on lecture about the dangers of unregulated charlatans and scientifically unproven alternatives. That if I did choose to go that route, I was on my own, they would not sanction it or support me in any way. The sop he gave was that I would still be treated by NHS if I did return. By this time he had stood up and was showing me the door, "see you in a year's time, goodbye"

I am waiting to see a Dr in January, in Glasgow, and I am pinning my hopes on a trial of NDT. The Dr in question does not prescribe anything himself, it will be down to my GP to agree to work with him. And if the Endocrinologists writes to her stating what he has just said to me, then she will be in an untenable situation. She will have to refuse to help.

I suspect the January consultation will prove to be a costly waste of my time and money because the NHS will not allow me to try any alternative treatment.

I feel very despondent and have no idea where to turn if this indeed proves to be the case.

I suppose I should consider myself lucky to get any treatment at all.

Sorry if this comes across as a pity party, it really isn't meant to be - it is just hard to be faced with such a brick wall.

[Hidden]

Hello, I sincerely hope that you won't feel your visit in January is a costly waste of time, and that you can try either NDT or T3 only. Some people find T4 is toxic in any form (NDT or levo) and do best on T3 only, so don't despair if NDT isn't the instant answer.

My daughter also had graded exercise and CBT offered - they seem to be the only tools in their box. She refused both as a complete waste of time, but did eventually allow a psychiatrist to give her a full assessment at the suggestion of the GP. The psychiatrist wrote a glowing report to the GP almost saying to her don't waste my time sending any more patients like this who clearly have no psychiatric problem!

Which thyroid tests have you had done recently? Have you had any adrenal or vitamin/mineral tests done? These will give important clues to the private doctor.

Jane x

[Clarebear in reply to Hidden]

Snap Jane x

[Clarebear]

Hi hiphypo - sorry to hear you had such a disappointing visit to the endocrinology department Just wondering what your test results are for FT3, FT4 and TSH? Have you also had vitamin B12, vitamin D, ferritin, iron and folate tested? If you have any of these results perhaps you could post them on here please together with the ranges?

It is good you are seeing another doctor in Glasgow in January but I am wondering if you might be better off seeing someone who can prescribe, if it is NDT you are after? I was also wondering if you have considered asking for a trial of T3 only? Just wondering if maybe you are unable to process the T4 and it is that which is causing the problem. Although NDT contains T3 the ratio in it of it to T4 to T3 is less than you are currently taking on synthetic T3 and T4. xx

[Hiphypo]

Gosh, I go out for an evening and come back to such wonderful understanding Thank you Jane and Clare.

@Clare: I have no access to my test results without troubling my GP again, and she prepared copies of them and sent them off to the private Dr free of charge. I expect I will be able to get copies from him when I see him next month. Will it be ok to post details up then? Thank you for suggesting it.

I have wondered about how to go about trying out different combinations but the Endo I saw was so dismissive that I got the feeling that not only was this all he was prepared to offer, but I was to think myself lucky that I hadn't been sent to the naughty step!

.

I would not know how to go about finding a Dr I could see for NDT, I am afraid that they are probably a rarity up here. I am also a bit worried that until I have seen this Dr in Jan I might be better off not drawing too much attention to myself?

@Jane: Interestingly, when there was a supply failure this year of the brand of Levo I take, I went without T4 for some months. At first I was ok but then began to feel worse and worse, until I went to my GP and she gave me two T4 prescriptions: one for the named brand, and another for a generic. She felt it was better for me to get some rather than none. In the event, when I went to the pharmacy, they had just that day begun to get stock in again. I am a bit better since restarting it.

That is really funny about your daughter being packed off to the psych - at least there is one blessed with common sense out there! But it is awful how quick they are to play pass the parcel with one's symptoms.

I did have a 24 hr saliva test done a couple of years ago for another Dr who helps people with Thyroid problems, but following the regime outlined became too much for me, and I am afraid the costs of all the special supplements were heavy. I gave it a really good go, including changing my diet to low carb, but felt no better after 6 months. Plus the travelling to see him in Aberdeen was simply more than I could manage. I understand that the Glasgow Dr does not treat for Adrenals, so in a way that simplifies things a little.

I will have to be patient for a while yet.

Thanks so much for the responses and I will update next month.

Jenni x

[Jackie]

Hi If it helps, you can insist on seeing the consultant you were referred to at the hospital. They may be difficult about it but you can. I suspect though that the junior doctor was following the policy of the department, headed by the one or more consultants. I agree that you need to look elseware and not wait a year. You could try phoning or e mailing the consultants secretary for the endo saying that you are so ill and want urgent treatment. I suspect that will not really help for reasons I have stated.

Good luck,

Jackie

[Glynisrose]

I would have said that to see the consultant you wanted, have a word with the nurse when you go to the consultation and ask to see a named doctor. You may have to wait a little longer but generally the doc will see you.

I had the same when I first went to see my endo, it said on the appointment letter I would see him or 'one of his team'. I was down to see the junior doc as it was my first visit but I asked the nurse if there was any chance I could see the top dog, she asked and he said yes!!

Phone the consultants secretary and ask for an appointment, or get your GP to refer you again and ask to see the main one not the junior!!

[Clarebear]

Hi again hiphypo - another member who is based in Scotland has an endo that she can highly recommend. I have been talking to her via a PM and she is happy for me to add you into the conversation where the details of the endo can be found. Hope it might be of some help. xx

[Townplanner in reply to Clarebear]

Hi Clarebear,

I hope you don't mind me asking, but I have a friend in Scotland who needs to go to good endo who is recommended. She's hoping to get prescribed T3 or NDT. If you can help that would be great.

Thanks very much x

[frannymc in reply to Clarebear]

Dear Clarebear, I'm scouring through old posts for hints on a good endo and found your post. Could you possibly dm me the name of the doc? Many thanks, Franny

[frannymc]

How are you now Hiphypo? Was the Glasgow doc any help? If so could you dm me their name? Thank you, Franny