TSH perfectly normal ! ?

[mountainice]

Hello again. Well, I paid to see the endo today and what people said would happen did happen. He was fixated on numbers as usual and didn't really listen to symptoms. The first words were, 'Why do you think you need an endocrinologist' . Well, that sort of opening line always throws me, why is it up to me to justify myself when he hadn't even asked me anything about how I felt. He had my NHS records up on screen and said I was 'perfectly normal'. My last TSH 3.5. I said I just had some tests done and it was 5.4. I had sent a letter ahead to him about myself and detailing symptoms, along with blood test results. I don't think he could have read it much or looked at the results. I said it should be in with the letter, test results from Medichecks. 'What are Medichecks' ? (in a very dismissive voice). I pointed out the T3 at the lower end of normal. Once again, was more interested in my feeling sick and diarrhoea episodes. I never got to say how cold I get and can't control my temperature, ringing in ears intermittently; I did say about my throat and the irritation and choking and other things set down in my letter. I've just read today a possible link between Fuchs Dystrophy and hypothyroidism - he had never heard of Fuchs Endothelial Dystrophy. He said he couldn't treat me on those results, not even a trial but I could have blood tests there and then, try a gluten-free diet, get another couple of tests through my gp and come back in 12 weeks, having had another TSH 2 weeks before the appointment. He started saying how he visits people in hospital with osteoporosis and if you break your hip you never come out and if I have thyroxine when I don't need it, it will cause osteoporosis. He came across as 'I'm the doctor, I know'. He did smile too, but it still felt all very condescending. I didn't do the blood tests - there were 4 at £60 each plus £20 for the nurse, especially as I had just paid out for the very same ones with Medichecks. I will make a doc app to see if I can get them that way. What worries me is my arms and shoulders getting worse and worse - the range of movement, especially the left arm. He trotted out the fibromyalgia possibility. I am up and can't sleep because of being annoyed and worried about it all. I have insomnia anyway and this doesn't help.

[Lora7again]

I have decided not to waste my money on paying to see a Consultant because I probably know more about thyroid disease than he does having suffered with it for 12 years. I would treat yourself like I had to and other members on this site. If you don't you might end up bedridden like I was for a couple of years. My Consultant Endo offered me counselling when my TSH was 9! I discharged myself and saw Dr Skinner and then went into remission - I have Graves and at the moment I am feeling ok.

[mountainice in reply to Lora7again]

I am still hopeful I can find the right doctor! I am pleased that you are feeling ok.

I didn't reply to shaws on my thread 16 days ago who gave me this link which I have only just read and I found interesting as this was what this doctor was emphasising yesterday - that I could end up in a ward with a broken hip through osteoporosis and then never leave hospital - die is what he meant!

thyroiduk.org.uk/tuk/thyroi...

I am trying to find out on my various threads who gave me this link that follows and said that "This paper (link follows) is written by a team of eminent researchers in the thyroid field....amongst them one of TUK's advisors, Dr John Midgely aka Diogenes. I gave a copy to an endo who insisted my TSH was unsatisfactory...he didn't mention TSH again!"

bmcendocrdisord.biomedcentr...

I have been looking and looking but can't find who said it.

[humanbean in reply to mountainice]

Regarding osteoporosis, you may find this link of use :

thyroid.ca/resource-materia...

It's the full paper, not just the abstract, mentioned in your first link above.

[mountainice in reply to humanbean]

Thanks, I am printing off.

[Blueskyyy in reply to Lora7again]

Maybe I am too dump !

How it comes that you have graves and your tsh is high ?

I always understood that graces manifests itself as hyperthyroidism and thus the TSH is always very low !

[mountainice in reply to Blueskyyy]

Sorry, I don't have graves. Misunderstanding somewhere.

[Blueskyyy in reply to mountainice]

Well sorry, my reply is for lora7again

[mountainice in reply to Blueskyyy]

Ah yes, makes sense now.

[Lora7again in reply to Blueskyyy]

I really don't know why but I think it is because I have high antibodies - for some reason my body is attacking my thyroid. One of my friends has a rare cancer and is being giving imunotherapy where your antibodies attack the cancer and it does seem to be working for him.

nhs.uk/conditions/overactiv...

[shaws Administrator]

The comment from the Endocrinologist i.e. "'Why do you think you need an endocrinologist' " would suggest to me that he was suggesting you only consulted him in order that he could prescribe T3 for you.

[mountainice in reply to shaws]

I am not quite sure if that was the case as it was a first appointment and I haven't been diagnosed. I told him about how I consulted Dr Chandy by phone and email a year ago about ongoing symptoms and it was Dr Chandy who asked about my thyroid levels and it has gone on from there. Of course, I mentioned about my bad stomach and how more frequent SI jabs are helping, but once he was on that track he didn't really want to know anything else. This is the second endo where I have had to justify why I was there rather than being asked questions and of course I forgot some things. I talked about my muscles but forgot to say it involves my shoulders too. I mentioned the puffy swellings on my legs and how my legs are changing shape - my husband backed this up, but he was just not interested in looking at my legs. I told him about my throat irritation and choking - nothing.

[shaws Administrator in reply to mountainice]

That's the pity - they know nothing about clinical symptoms and no matter what we say, they will diagnose. I believe they've been told only to diagnose when TSH is 10. Some doctors will prescribe if TSH is a bit lower. Before the blood tests were introduced doctors knew the symptoms and we were given a trial of NDT. If we felt an improvement then we continued upon it and it was slowly raised.

I'm sure you will tick off more than a couple of symptoms:-

thyroiduk.org.uk/tuk/about_...

[mountainice in reply to shaws]

I told him that the guidelines state if between 5 and 10 if you are under 65 with symptoms to give a trial of thyroxine and my level was 5 when I was under 65 and I often didn't feel well but never went to the doctor as I just thought that's how I was. He said he would treat the person if over 5 anyway even if you are under 65 or over 70! Well, it is 5.4 but I don't think he wanted to take notice of my Medichecks' results. He was very dismissive. Actually, I had my chance and lost it when he said that when I have had tests if it is going over 5 he would consider a trial - and I didn't say well it is from my August Medichecks' results ! My brain has never worked quickly face-to-face, I am much better writing to someone.

And yes, ha had, a massive lot of ticks on that list!

[Hidden]

I mentioned to another member of group recently that when the results of investigations into the physical effects of several forms of cancer were made, it was concluded that the cancer had given the patient Hypothyroidism. I find that very hard to believe as the exact opposite conclusion is far more likely when the lack of thyroid hormones actually reduces the ability of the body to kill off all rogue cancerous cells. Undiagnosed hypothyroidism had caused the cancer!

Whilst I was on Levo, without a thyroid gland, I got kidney cancer. Fortunately I have a second kidney and no desire whatsoever to risk losing that by starting again on levo or even combined levo/liothyronine.

For the endo to say that if you have thyroxine (presumably levo) when don't need it, it will cause osteoporosis" is equally idiotic as it is not what is in the levo that matters regarding bone disease, it is what is NOT in the levo that is the real cause.

That's what I believe anyway, why should I believe a single word any medical expert may say when so many of them seem to believe that the main ingredients of NATURAL NDT are SYNTHETIC Liothyronine and SYNTHETIC Liothyronine, that NDT and Liothyronine should be blacklisted due to lack of appropriate medical trials but that Levothyroxine should be greenlisted despite the existence of any medical trials?

[Pebble23]

HiCould you tell me or send a link to what you read about potential link between Hypothyroidism and Fuchs.

As I have both I am very interested and have an opthalmology appt coming up.

Much appreciated.

[mountainice in reply to Pebble23]

Hello, I can't find the information I had before and I haven't saved it in my usual places, sorry. I have spent a while looking but the only thing I can find is some info that says '...some studies suggest that there may be a link between thyroid dysfunction and corneal endothelial loss'.

There is this one but it talks about AMD (Macular degeneration)

blogs.biomedcentral.com/on-...

[Pebble23 in reply to mountainice]

Thank you.I will have a search too.

[mountainice in reply to Pebble23]

I also read Fuchs is inherited, so maybe nothing to do with thyroid, though perhaps thyroid could make it worse or bring it on when otherwise it would have been dormant - who knows?