When the body is well it carries the mind. When the body is failing the mind has to carry the body.

[MikeR]

Why is it that it seems to take doctors an age to tackle Thyroid related issues. It makes me want to scream. I am still unmedicated, I have been feeling cr@p since June and nothing seems to happen at any speed.

If I were to approach a private Endo / doctor would this move any faster? I have had two really rubbish days and I long to at least understand if I'm ever likely to feel half decent again. It feels like I wandering round in a daze, with a hangover.

I hear positive stories of folk who seemingly take a couple of tablets and hey presto there back up and running, Sadly that doesn't seem remotely possible and I am growing tired and upset by it all.

I looki in the mirror and think 'well mate, that was your life, now you are merely an empty vessel wasting oxygen'. Game over.

What is the point?

[shaws]

Hi MikeR

I am sorry you are in a despondent state at present and it's no wonder if you are not being treated as you ought to be. Before the blood tests were introduced we were given NDT on our clinical symptoms alone - even on a trial basis.

Nowadays it's as if we were machines - like taking a car to a garage and plugging it in and the computer reads out the result. Put some oil in and off we go

We, humans, get blood tests and according to the blood tests we don't get prescribed unless we are 'outwith' the range - no knowledge at all of our clinical symptoms - we could be talking a foreign language.

Is it any wonder that patients self-medicate - it's no surprise but it shouldn't be the case.

I assume you've posted your results previously?

[MikeR in reply to shaws]

Hi Shaw,

I've been sub clinical hypo for 5 years after looking at my TSH (sits above 4) with T4 sitting at the low end of range. Between June - Aug my TSH has changed to be 2.5 - 3.1 and the T4 10.8 - 14ish. The tell tale one being TPOab = 491 (Sept 3rd). Allied to which I have a nodule that required another fine needle aspiration as the first one was inconclusive. I've only seen a Thyroid surgeon, an Endo is nowhere in sight at this point! Whose prescribes meds the endo or the GP? I ssume they both can?

Thanks.

[Hidden in reply to MikeR]

What is the rationale for not treating you? You have low T3 and high antibodies. It's only going to get worse!! Are they stupid?

[MikeR in reply to Hidden]

It's lalmost like there is a script by which they work, obsessing about placing me nicely into a 'pigeon hole' that suit the NHS and protocols by which they must operate. There is no 'blue sky' thought process going on here.

[Hidden in reply to MikeR]

At least your going to the docs, so I hope you get sorted. I got beta-blockers for anxiety and never went back - ended off housebound for 4 years - never left the house for 4 years, honestly!! I was too ill to go to docs and ended off in an ambulance before anything actually happened. Then a case of undermedication for years. Nightmare!!

Change doctors Mike. I honestly don't think they understand what they're doing. You're right, there's no thought goes into it. Some of them really lack diagnostic capability and that's worrying.

[shaws in reply to Hidden]

I'm sorry you had a rough time too to get diagnosed, I did as well. Thankfully I'm now on T3 only and well - it wasn't an easy journey but hopefully I'm at the end of a search.

[Hidden in reply to shaws]

Thanks shaws and I'm glad you've found a solution. It really was an awful experience and I'm surprised sometimes I'm still here. I'm much better now, but that wouldn't be hard! It's been the addition of a small amount of T3 (in NDT) that has made a world of difference.

[shaws in reply to Hidden]

They insist on levo only no matter you are feeling much worse. It's only through Thyroiduk (before the forum) I found that there others were available. Those who 'insist' I think are stubborn and ignore patients who are diagnosed with everything and medicated for the same instead of them being knowledgeable about symptoms and medicating regardless of the whereabouts of the TSH. Even some members are prescribed but GP insists that around TSH 4 is acceptable.

[Hidden in reply to shaws]

That's exactly it shaws, total disregard for what a patient is actually saying. I was told it must be something else despite being on 100mcg levo and feeling death-like with a TSH of 4.9 where the top of the range was 5. Locum checked results and got receptionist to tell me "nothing to worry about you're normal". That was the final straw for me (after going from 50 to 75 to 100mcg levo after diagnosis and getting worse by the week) and I haven't been back since and have added 1.25 grains Armour and feel light years better than before. Still in range for FT4 & FT3 and I can now think. I'm not perfect but I wake up now and mostly feel like I did in my 20s!! If it wasn't so serious it would be comical - monty python or the like could do a cracking sketch really!!

My blood tests (always TSH) were all taken on a "good" days as sometimes I cancelled as I was too unwell to actually attend.

[shaws in reply to MikeR]

MikeR

Email [e-mail] and ask for the a copy of the Pulse Online article (doctors magazine) and highlight the question/answer on antibodies in which Dr Toft said prescribe to 'nip things in the bud'.

[shaws in reply to MikeR]

Just for info and I think you will be interested.

thyroiduk.org.uk/tuk/testin...

[Clutter in reply to MikeR]

Mike, When thyroid levels are abnormal either can. I was monitored by a multi-disciplinary team pre and post surgery. Surgeon prescribed T3 after thyroidectomy, oncologist prescribed Levothyroxine after RAI, surgeon adjusted dose 6 weeks later, and referred me to endocrinology 3 months after RAI (6 months after thyroidectomy). Oncologist sat in on a couple of endo consults, and surgeon was at most consults until recently.

[MikeR in reply to Clutter]

That's encouraging to here Clutter, thank you. I'm being treated in St. James hospital Leeds. Which is a very good hospital. So maybe I'm being a bit impatient as is my way!

[Clutter in reply to MikeR]

Mike, it's natural to feel impatient when you're unwell and these interminable tests are being done but there's no treatment to relieve symptoms.

I was told bloods euthyroid so I wasn't hypo, Hashimoto's and nodules don't cause symptoms. Something was causing extreme symptoms so I *believed* hemilobectomy would make everything good and was desperately disappointed that it didn't.

Radioactive iodine ablatement (RAI) is administered to ablate remnant thyroid cells left in the thyroid bed after thyroidectomy and any thyroid cells loosed into the body during surgery to prevent cancerous cells proliferating.

[MikeR in reply to Clutter]

Clutter what is RAI please?

[shaws in reply to MikeR]

It's Radio Active Iodine. This is a link:

cancerresearchuk.org/about-...

[greygoose]

Ummm I have to say, I've never heard stories of people who 'take a couple of tablets and hey presto there back up and running'. Except from doctors who Don't want to believe I'm still ill on 200 mcg Levo and 50 mcg T3. They say things like 'well, I've got lots of patients who take 25 mcg Levo and they're fine, Don't know what's up with you!' But it's all bulls**t. They just want to make you feel inferior and a freak. Even with people who are fine on Levo, I doubt it was that easy in the beginning, it took time.

But, of course, the first thing you've got to do is get proper testing - yes, I know you have high antibodies and they are causing problems - but what is your FT3? If that is too low, you are going to have all sorts of problems. Would things go quicker if you went private? There's no guarantee - although Louis Warville has a list of good private doctors. You could ask her for that, and chose one near to you. But, if they are only interested in your TSH, it could still be difficult, I'm afraid.

But I'm perfectly confident that once you do manage to optimise your hormones, you're going to feel a lot more than half decent! Don't ever think you're a waste of oxygen, or that life is over, because it just isn't true. This is just a blip you have to get over, and then you'll be off and running over those hills again, just like before.

[MikeR in reply to greygoose]

Thank you Grey. Crying out of your generosity of spirit. Thank you. T3 is 1.1

[greygoose in reply to MikeR]

That sounds very low! What's the range?

[MikeR in reply to greygoose]

0.9 - 2.5 a hand scrawled note my a junior doctor given to me during my hospital stay.

[greygoose in reply to MikeR]

Well, mid-range is 1.7, so you can see, it is quite low. So, I'm not surprised you feeling bad. Plus the antibodies causing symptoms...