Frustrated and looking for a way forward

[MMaud]

I'll spare you guys a load of preamble and cut to September '16 when I visited my GP, complaining of feeling very cold and just not being "myself". Her immediate response was to cite the reason as the protracted periods of most years I spend overseas in a tropical climate. This I rebuffed for various reasons, at which point she conformed it was quite some time sine my thyroid had been checked over, so sent me off for a full blood panel, plus thyroid function. Naively, I thought that would be a full thyroid panel, but it was merely TSH (2), although CRP (<5), Folate (15), Ferritin (139), B12 (404) and VitD (80) were included.

When I returned to discuss the results with her, she confirmed everything "looked fine", but if I was feeling no better, she would refer me to an Endo, which she did.

I saw the Endo in January, where he did TSH (3.4) , FT4 (11) and Cortisol (6.95), with follow-up bloods any time from mid-April.

Feeling increasingly unwell, with energy and cognitive function levels on the floor, I wrote to him asking if there were any further tests I could have done now, and if the NHS wouldn't or couldn't support them, then, within reason I would pay for them myself.

His response two weeks later amounted to two lines, saying my results are in range and that he is not sure he will ever have a reason for my symptoms.

Needless to say I am unhappy with this situation. I am a usually fit, energetic, very intelligent woman, but nothing could be further from that description right now.

I'm trying to pick a rational way forward towards feeling better. I guess I am here to "listen to" and read of those who have walked this frustrating path.

[bluebug]

What is the range for FT4?

[bluebug]

The reason I'm asking is in my private tests the range starts at 11 or 12 but on my NHS tests the range starts at 9.

[MMaud]

FT4 range is stated as 10 - 15.

The ranges seem to be based on someone's lucky number!

[Treepie]

Always get your results and post with the ranges for people to comment. It looks like your thyroid is struggling but docs unlikely to help at this stage.

You might be best getting a full suite of tests privately.

[MMaud in reply to Treepie]

That was my conclusion, but my next dilemma is who would act upon them as Endo has decreed me "in range".

As I had copied my GP into my email to the Consultant, I plan to drop off a copy of his reply and ask for a telephone call. She's usually very good and is happy I am educated and engaged in my wellbeing, so can discuss that approach with her, on the basis of "I'm seriously considering a full thyroid panel, but feel concerned about anyone acting upon the results. In my shoes, what would your approach be?" I usually find that works to start an adult conversation.

What concerns me is reading that NICE guidelines apparently say treatment of TSH under 10 is not considered helpful, and on that basis I am a long way off any assistance.

I just can't envisage too much longer with this coldness. Central heating set to mid-20s and I am wearing a fleece, socks and UGGs, hugging a hot water bottle. The upside is, it's winter, so at last other people are well wrapped up outdoors.

[Treepie in reply to MMaud]

Nice guidelines leave people very sick in this instance.I was "lucky" TSH 101 .No dispute!

You should ask for both antibodies to be tested .If you have Hashimotos or as the docs prefer auto immune thyroiditis they should treat on that basis.

[SAMBS in reply to MMaud]

I always wear a scarf round my neck these days, it helps keep the hypothalamus and circulating blood warm. Lightweight summer scarves are very pretty and can be worn year round, especially indoors. When out in winter it's a wool made scarfe I wear, but both Help and have certainly removed the "feeling cold", especially round my shoulders, upper back area" by doing so.

[thyr01d in reply to MMaud]

Hello MMaud

This may be way off track for you but I'm mentioning it just in case it could be your problem.

Here's my journey and I wonder if you might be the same:

I learnt at the weekend that being cold is a symptom of anorexia. I am plump and do not look at all anorexic but when working in a psychiatric hospital and socialising with staff the doctors observed that I was anorexic. I thought they were mad! But, this weekend I have just discovered as part of a course I am doing that as well as not eating guiding symptoms are 'down' on the face and yellow-tinted skin which I have and have had for years - thought it was too many carrots!

Going to put some potatoes in the oven to make sure I eat this evening!!!

Good luck in finding your solution and restoring your health and warmth.

[MMaud in reply to thyr01d]

Sorry, somehow I missed your post earlier. Thanks for thinking of me.

Whilst I am of slight build, I eat extremely well. I eat a low carb diet (and have done for some years), averaging 200-2500 calories a day (and, no. I don't purge or vomit either), so there's plenty going in.

As the coldness began creeping onto me, I did have a couple of weeks of further increased calories; just to see if there was any impact. None, end that it is possible for someone to eating loads of double cream!

As a an aside, what ever is "...."down" on the face...."?

Enjoy your spud, and I hope your own health is restored very soon.

[thyr01d in reply to MMaud]

Thanks for your lovely reply MMaud. I thought the lady who suggested scarves gave a good answer, I wear scarves even indoors!

Love the sound of your diet!

Down on the face refers to a covering of very fine hairs (tends to be in the beard area), that's a pretty poor explanation but I can't think of a better one - something like the first hair on a very, very blonde baby - almost invisible.

Warmest wishes!

[MMaud in reply to thyr01d]

Ah,........... Now I understand what you mean. I thought you meant down as in "down in the mouth". I mean, we all have that sometimes!

A reduced carb diet is utterly delicious, and I no longer miss sugar, grains or starchy veg, although the occasional chip has been known to migrate from my OH's plate to my own. Ahem.

Yes, I do wear scarves at home too, as Sambs suggests. Thank you for taking the time to reply, Sambs. Between us we could probably open a branch of Accessorise or Mountain Warehouse. But I digress. :o)

[Pixielula]

Also I'm not sure I saw it mentioned! bloods should be done as early as possible (8:30-9:00) And on an empty stomach no tea or coffee before hand..... THS is at its highest first thing and drops off after eating and as the day goes on.

[MMaud in reply to Pixielula]

I knew that timing is important for cortisol, due to its circadian rhythm, but I thought the main thyroid hormones were a bit more "stable" than that.

Having had my TSH tested twice, non-fasted, but within about an hour of each other on their respective days, I suppose assuming I fast for the next lot, I won't have a like-for-like comparison.

I like consistent data.

[serenfach]

I can understand your dilemma - why bother with a blood test if nobody is going to take any notice of it?

It sounds like you have a good relationship with your GP, so go back and discuss it with her. Did you know they have "red flag" questions and answers? One of these is "I am in danger of losing my job". You could try that. Never, ever, ever say you are feeling down, fed up, depressed, or they will label you with that and give you ADs and feel they have done all they can! Try not to burst into tears of frustration either (I did, could not help it!). I then asked if I could borrow the wall of the surgery to bang my head against!

You could ask for a full blood panel (to rule out anything else) which they are usually OK with. This may show a change in your TSH (get an early appointment and dont eat breakfast) and then ask "what can WE do to help me feel better". Good luck and let us know how you get on. Hug.

[MMaud in reply to serenfach]

Thanks serenfach - I've already written to my GP, enclosing the email exchange between the Endo and myself, saying how disappointed about where we have arrived and more importantly his apparent expectations for finding a diagnosis.

My intention is to call tomorrow for a telephone consultation (easier to acquire than a face-to-face), and pick her brains.

I have regular blood panels done, as I am at risk of diabetes, and I keep records of those on a spreadsheet, so that I am able to track any developing trends. Ignoring the pesky total cholesterol, everything is in range, although a couple of things skirt around the edges. My last full panel was in September, so she may suggest another.

I do rate my GP, and she is pretty proactive in terms of making or offering referrals for anything a bit tricky, so I'll see how that goes, I guess.