I think I now have to act based on latest results. But am confused what my next step should be. Help!!

[melodypond]

Okay. So you will see from my posts I am going back and forth, round and round. But now I think I need to take action regarding my latest thyroid results.

Long story short, I have been diagnosed with Fibro but believe there is an underlying cause. I have had two positive ANA results so been looking at possible cause of that as Lupus but also exploring if I have a B12 deficiency ( I now supplement sublingualy) and of course if thyroid is the cause. I also have elevated liver function tests and am seeing a heptologist for possible autoimmune hepatitis.

A couple of weeks ago I woke up one morning feeling I was going to die. My glands were swollen enormously, I ached all over, I was slightly yellow (I could tell my liver tests were raised again), I was shaking and nauseus and I just had to sleep, not moving for around 48 hours. when I could muster up the strength I went to the GP and asked her to run some tests. I said it could have just been a virus but felt like something 'different'.

As expected my liver function tests were elevated again - this time the Gamma GT was very raised as well which is usually associated with alcoholism - I rarely drink.

But also my thyroid test was as follows:

Serum free T4 - 9.8 (7-17)

Serum TSH 2.14 (0.4-4.5)

Obviously I know from being on here that my T4 is way too low and that my TSH, at over 2, is probably too high also. I also know that according to the results and the NHS I am considered 'normal'.

My Vit D though did come back abnormal. I take a good general vit supplement but also a high Vit D3 supplement.

The Vit D3 was 56.2. But my Vit D2 was less than 10 which is I believe way too low.

Oh and guess what, despite not eating bread, rice, pasta, or fast food my cholesterol was also flagged. My 'bad' cholesterol was 3.3 (<3.0) and my total was 5.2 (5.0). My good cholesterol was just about up to scratch 1.2 (>1.2). The total ratio was 4.3 (<6.0) so the ratio is okay.

So I am now going to bite the bullet and seek a private consultation. I already have the Endo list and the practitioner list from Louise but I was wondering - should I take a thyroid urine test first (most on the list who don't go off blood tests seem to only give treatment if the urine tests show something)??

Or should I wait until I see the private endo as they would order the tests anyway and I will end up paying twice?

It is all so confusing, I am not thinking clearly at the moment and making a decision is pretty impossible!

Also a few people have PM'd me doctors they have seen in the past but I would be grateful if people could recommend any on the list - I think I would rather see a private endo first but I have read so many horror stories on here even with private docs. I have been toying with the idea of seeing Dr P but not got round to it as he has been ill though seeing patients again now. Would I be best seeing someone who might prescribe??

Obviously my test results are 'normal' so I need to start with an endo who will look at my symptoms as well as borderline results to start off with. Or would I be in a better position if I had the urine test to take with me. Or, should I just see Dr P as he would be the only one willing to listen in the absence of abnormal blood tests?

I live in Manchester but would be willing to travel to London or Birmingham as I have to sometimes go to those places for work anyway.

Sorry for this being a bit rambling and for all the questions. I just need to know where to go from here. And everyone on here is always so helpful - I am relying on your common sense because mine seems to have vanished into thin air and I am all over the place.

Previous results are below. Oh and I have nearly every symptom on the Thyroid Uk checklist! Too many to list again.

Thanks

MP x

Dec 2013

Serum Free T4 level was 13.3pmol/l (7.0-17.0)

Serum TSH 1.53 mu/L (0.40-4.50)

Total thyroxine(T4) 118 nmol/L 59-154

April (private test) 2013

TSH 2.50 mIU/l 2.50 mIU/L 0.27-4.2

Free Thyroxine 15.5 pmol/L 12.0 - 22.0

Free T3 4.8 pmol/L 3.1 - 6.8

Total thyroxine(T4) 118 nmol/L 59-154

Thyroglobulin Antibody 16.9 IU/mL 0-115(negative)

Thyroid Peroxidase Antibodies 9.1 IU/mL <34 (negative)

May 2013

serum T4 11 (7-17)

serum TSH 1.7 (0.4-4.50)

[shaws Administrator]

Doctor's appear unaware of the clinical symptoms of the dysfunction of the thyroid gland. This is a link which may be informative which included with your clinical symptoms could be useful for your GP:-

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

I have read that Vitamin D should be 70 at least. This is an excerpt:-

Also what makes vitamin D unique compared to other vitamins, is that when your body gets its vitamin D, it turns vitamin D into a hormone. This hormone is sometimes called “activated vitamin D” or “calcitriol.”

Higher cholesterol is one of the clinical symptoms of hypo and it usually reduces when on adequate meds.

I think any doctor on Thyroiduk's list is sympathetic.

This is a link re the connection between thyroid gland and liver.

ncbi.nlm.nih.gov/pubmed/754...

I hope you get better soon.

[melodypond in reply to shaws]

Thanks Shaws.

I will get my Vit D sorted - going to see GP next week and will ask for a mega dose supplement. Had an interesting conversation with my Hepatologist this morning. He said the only usual link between liver and thyroid is autoimmune (at the moment he doesn't think I have autoimmune hepatitis but it could show up in my bloods in future so they will keep monitoring). In other words I could have it but they can't diagnose until it shows in the bloods. Sounds familiar to everyone on here no doubt! This is despite to positive ANA's, my most recent was negative. He said my thyroid is 'fine' and I shouldn't worry. I pointed out that in other countries I would be treated for hypo as their ranges differ greatly. It is a good job my Liver function tests do show some abnormality because I could tell he was thinking that I was just googling and making my symptoms to fit what I had read. He said he wouldn't do my liver blood tests again today as 'no point in looking for something that isn't there'. Grrrrrrrrr. To be fair I was with him for a good half hour, he listened to me and answered my questions, wasn't patronising but the upshot was that the thyroid wasn't an issue here and doesn't have anything to do with my liver. Shame they can't find the cause of the liver problems though eh?. A liver that isn't functioning properly is bound to make you feel ill, just like a thyroid that isn't working. Anyway, have ordered a home test kit through BH and I am going to take the test very early in the morning. If that doesn't show anything I am going to order the urine thyroid kit and an adrenal stress kit. I can't really afford it and I feel guilty because the kids keep mithering to go on holiday and we have to keep saying no, and now I have gone and spent money on testing kits! MP x

[shaws Administrator in reply to melodypond]

It is natural that we want to know what's making us unwell and get frustrated when there's no clear answer.

[Angel_of_the_North]

With the UK vit measurements (nmol/l), you need D around the 90s (most of the internet recommendations are based on US measurements which are different). Cholesterol of less than 6 would have been considered quite OK before "they" started to try to get us all on statins. And apparently not all LDL is actually bad but a natural response to low vitamin D.

[melodypond in reply to Angel_of_the_North]

Thanks so much for your reply. Yes I am going to see my GP next week, perhaps get a prescription for Vit D. I did think my supplements should have had it covered but obviously not. I think perhaps because of my liver function being a bit out of whack. I am not too worried about my cholesterol because I know my diet is good (when I can face eating and because I just continually put on weight no matter what) and I have dug out a previous test which showed my 'good cholesterol' was on the upper range thus balancing out the 'bad'. I think I can probably sort that out with the Vit D as you say.

Thanks MP x