Endocrinology Appointment.

[Dimples]

Following an appointment, which I requested from my G.P. I had a good discussion and explained how I felt I was only functioning on 50% due to my total thyroidectomy seven years ago, today I have received a letter diagnosing Chronic Fatigue Syndrome and a prescription for Amytriptyline in the letter he has written 'she obviously does have a thyroid problem as well but her replacement is reasonable and her TSH is 0.11, so if anything she is slightly over replaced and I don't think it is appropriate ti increase her Thyroxine' Am going to try what he suggested however can't help feeling disappointed 😞

[Marz]

Sorry to read the outcome of your appointment with the Endo. Looking back at your thread of a few months ago - it was suggested you needed the FT4 and the FT3 tested as well as the TSH. Did this happen - and what were the results ? I would be loathe to accept the CFS diagnosis without having in depth thyroid testing and OPTIMAL treatment.

You may need some T3 adding to your T4 dose. Also how are your levels of Iron - Ferritin - Folate - VitD - B12 ? They need to be optimal too. B12 over 900 - Ferritin around 80/90 and D also at the top of the range.

I am just a fellow sufferer - not a medical person

I fear your Endo has not served you well....

[Dimples in reply to Marz]

Hello Marz, thanks for the response, yes I did request the FT3 and FT4 but as usual the NHS chose to ignore that and tested for U&E, LFTs, Calcium, HBA1C, CRP and Vit D all which came back within range so as I saw the Consultant Specialist, I feel he must know better than I, if the Amitriptyline is not effective, I shall report it back to the specialist and ask for alternative treatment, but thankyou for your support,

Best,

Dimples 😊

[greygoose in reply to Dimples]

They cannot 'diagnose' you with CFS. It is a syndrome, not a disease. You cannot 'diagnose' anyone with a syndrome. It just goes against all logic.

What they should be doing is, looking for the reason for your sydrome - CFS - what is causing the symptoms like fatigue. And if you have had your thyroid removed, it seems obvious to me that that must have something to do with it!

Having a TSH of 0.11 does not mean you are over-medicated. There is no way, actually, that they can know you are over-medicated unless you have hyper symptoms. A) because they aren't doing the right tests, and B) because a blood test, as the name suggests, only tests what's in your blood, not what you are absorbing into the cells.

It's not a good idea to presume that your 'specialist' knows what he's doing - doesn't sound to me that he does! You have to ask questions, learn, stick to your guns when you believe he is wrong. Don't accept this false 'diagnosis', I beg you. It will stick to you like glue, and in future, everything that is wrong with you will be put down to this, and you won't get any further help. That's how it works.

You may very well be fatigued, but that doesn't mean that you have some made-up condition that they call CFS. Being low in T3 will make you very, very tired. But if they won't test it, they will never know. You need to get a private blood test, and see exactly what you have in your veins, and then fight for correct treatment of your thyroid condition. And if they won't be co-operative, then get rid of them, and do it yourself. You are Worth more than these bumbling idiots and Don't deserve to have them ruin your life - which is exactly what they are about to do.

Take care, grey

[Clutter]

Dimples, good advice from Marz. TSH is a pituitary hormone and doesn't indicate what level of thyroid hormone you have. TSH 0.11 doesn't mean you are adequately or over replaced unless FT4 &/or FT3 are over range. I'm surprised you endo didn't find it necessary to order FT4, at least. I also doubt an endocrinologist is competent to make a CFS diagnosis.

You can order private thyroid tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

[Dimples in reply to Clutter]

Clutter, many thanks for the link, I may give that a try, seven years down the line, seriously fed up with existing as opposed to living the life I should be,

Best,

Dimples.

[Marz in reply to Dimples]

Am afraid it is about taking control of our own health - so if possible have the tests done privately as suggested by Clutter. Most of us have - who have improved our health.

Not familiar with the drug you have been prescribed - but it may skew your thyroid results. I would research it first before taking it. Is it addictive ? Two years ago I was prescribed a powerful pill for Crohns - I researched it and decided I was better off without it....am still fine !

Without a thyroid I would suspect you are very LOW in T3 - the hormone that is needed in every cell of your body. Personally I would be trialling T3 rather than the Amitriptyline and ensuring my vitamins and minerals were optimal before anything else. B12 needs to be around 1000 - Ferritin - 80/90 and VitD towards the top of the range. Optimizing all of these has made a huge difference to my wellbeing...

Click onto my name and you can read my Profile - I had struggled with my health for over 50 years before I was diagnosed and finding this forum 4 years ago has also taught me so much. Doctors are more interested in being rewarded for prescribing drugs that you may or may not need - searching for the ROOT cause is time consuming..... of course there are some mighty fine exceptions. However I do not understand why you have been prescribed something without testing the FT4 and FT3 - it is quite scandalous.....

[Spareribs]

"Diagnosis" of CFS

nhs.uk/Conditions/Chronic-f...

it clearly says under-active Thyroid there - did you take your levo before the test?

Was it first thing? There are so many variables as TSH changes daily, therefore not a reliable test on its own - ask for FT4 & FT3 at least.

You may well not have enough Thyroxine or you may not be well enough to convert it to usable T3. Make sure your levels of vital minerals are adequate (iron, ferritin, B12 & folate & VitD) all needed for T4 to work.

I refused a GP's diagnosis of 'CFS/ME' & ADs just after my Partial op - co-incidence!

GP said "its not a bad diagnosis to have"....

later found I was low Vit D, then eventually blood tests caught up with how I was feeling - diagnosed HypoT. Jane

P.S. A work colleague diagnosed with ME/CFS has a much more serious condition - why are doctors so quick to label us?

[Spareribs in reply to Spareribs]

My labs tested FT4 FT3 as the TSH was out of range -

I suspect 0.11 is out of range - so there may be results somewhere??

[Dimples]

Thankyou everyone for your support and advice, the best way forward for me is to get a private blood test for the T3 & T4 although if that proves I am deficient, I very much doubt that it would be prescribed as 28 tablets are over £100.00 per packet (Liothyrine), I am informed , as I work for the NHS and budgets are an issue, also I receive no preferential treatment as an employee. Thanks again all.