Feel awful but results 'normal'

[oozlumbird]

Hi. I posted earlier today regarding a previous low T3 level with 'normal' TSH and T4. Having felt close to collapse for the last few weeks I've just had another blood test and annoyingly the lab has only done a TSH, which is 2.79 (the lab gives the range as 0.27-4.2). This was taken at 4pm, so probably at its highest level.

I've been told to repeat the renal function tests in a month as serum sodium was 141 (range 133-146) and serum creatinine was 87 (range 44-80). Not sure if these are relevant. Serum FSH was 14.4 (range 3.5-12.5). GFR was 61ml/min/1,73m2 – no idea what this is, but it looks as though this should be greater than 90. Does this mean anything to anyone out there?!

I have classic hypo symptoms – no appetite, terrible exhaustion, outer third of eyebrows fallen out, weight gain, pains and weakness in hands and limbs, lots of headaches, low mood, plus a thyroid swelling that came up over the weekend. Also brain fog, mixing up words, writing words backwards (very worrying for an ex-journalist!) – I keep dropping things and find it hard to coordinate my hands (I am now a piano teacher, so this is my livelihood at stake). I was diagnosed with Graves disease three years ago, but it was sorted with carbimazole and I'm no longer on medication; however I think it's now gone the other way. A previous GP tested for antibodies last year, but it was clear. The GP has just said to come back in a month for another blood test.

I seem to remember that the NICE guidelines say that if there is a thyroid swelling and symptoms then I should be referred to a specialist within two weeks – but I would be referred to the endos who previously said that low T3 is nothing to worry about.

I live near Reading but can travel easily into London or Oxford. Can anyone recommend a sympathetic and thorough private endo who can also investigate my adrenals, as I think adrenal fatigue may be an alternative explanation. I can't really afford this, but nor can I afford to be turning down work.

I'm very worried about all of this as I'm a self-employed single mum with no family support and feeling very alone, weak and scared.

[HIFL]

Your high creatinine and low GFR are just more signs that your thyroid levels are too low. Your kidney function is too slow, along with the rest of your body. There are references on this page you can use to prove that you should be prescribed some thyroid hormone: tiredthyroid.com/blog/2014/...

I hope someone else can chime in with an endo recommendation.

[oozlumbird in reply to HIFL]

That's really helpful – thank you!

[TupennyRush in reply to oozlumbird]

Hi - I've messaged you contact details of my London based private empathetic NDT prescribing endo

[oozlumbird in reply to TupennyRush]

Thank you! Just emailing him now

[electrica77 in reply to TupennyRush]

Hi, sorry to hijack but could you please email them to me too? I've had similar issues recently and a bad experience of both NHS and an alternative practitioner. Any help appreciated ☺

[shaws]

email [e-mail] who has a list of sympathetic doctors/endos.

Our TSH is highest earlier in the morning and that's what most doctors diagnose us on - the TSH. If it's higher than the range we will get medicated. So next time you get a blood test for your thyroid gland, make it as early as possible. If you've been given medication leave approx 24 hours between levothyroxine and your blood test and take it afterwards.

If your doctor hasn't tested your antibodies, ask for it to be done as well as Vitamin B12, Vit D, iron, ferritin and folate. Always get a print-out of your blood test results for your own records and you can post if you have a query.

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

Unfortunately we have to read and learn in order to recover our health as some of us cannot do so on levothyroxine alone and doctors are reluctant to prescribe anything else. Neither do they know clinical symptoms which used to be the priority before the blood tests were introduced and the TSH used as a diagnosis. It is from the pituitary gland not the thyroid gland.

[penny]

For years I, like so many, was told by the GPs that my thyroid tests (one assumes only tsh) were within the 'normal range' and was offered antidepressants. It was only when I saw a private doctor that I was diagnosed; he looked at me and listened to my symptoms and said that 'of course' I was hypo. but we ordered a 24hr urine test to double-check. For a long time I got NDT on the nhs and then had to go onto T3-only. About 18 months' ago my medication was stopped as, according to the GP/nhs, I am not and have never been hypothyroid and therefore taking T3 would kill me.

You might have to be prepared for your nhs doctor to never diagnose hypothyroidism. To be fair to those doctors who know about the thyroid their hands are tied by the GMC who try and strike off those GPs brave enough to prescribe on symptoms, not blood tests.

[oozlumbird in reply to penny]

Hi Penny. I'm so sorry to hear you've been through all of this. I hope you're okay now, even if that's only by going private (why on earth is this necessary?!). I'm going to see my GP on Monday and will try to get the full thyroid panel done, plus ferritin (this went down to 5 last year, and my T3 was unsurprisingly low!). If not, I'll get all the bloods done privately and take them to Dr Conway. Time to max out the credit card

[penny]

I'm not alone in this.

I hope that your GP is clued up and flexible. Unfortunately they are rather ham-strung by the GMC and their rules. If your tests are 'within the normal range' they conclude that you are not hypothyroid but have something else wrong and are probably depressed.

It should not cost us so much to get diagnosed and treated, but better that than living a half life.

Good luck.

[oozlumbird]

Thanks. I think my new GP is pretty useless ("Lots of people feel tired and it usually goes away"), but there is a senior GP in the practice who my be a better one to turn to (although she has a huge waiting time!). I've been seeing a psychotherapist for a few years who is confident that I'm not depressed, so I won't be fobbed off with that one! I just hope I can convince the GP to do a full thyroid range of blood tests, so that at least I don't have to pay £000s for that.

What I don't understand is that you can see an endocrinologist privately who will prescribe you NDT or T3, but the same person working within the NHS has to tell you that it's not an effective treatment.

I wonder if you can claim for your expenses if a private endocrinologist finds a problem that your GP refused to investigate (especially if it's an endocrinologist working in an NHS hospital)? There's a thought...

[oozlumbird]

Many thanks. I don't suppose you could point me to that Swedish research?

I will ask the GP to investigate, but I don't hold out much hope. He checked haemoglobin, which was 'normal', but not ferritin – which was 5 (!) last year, while my haemoglobin was normal.

I'm worried about treating myself as a) I have an enlarged thyroid which may need to be scanned, b) these symptoms could be a combination of hypo and hyper, or they could be anaemia or adrenal insufficiency, c) if I'm not converting T4 to T3 then adding T4 could make me worse. I really think I need to gather all my 'evidence' then ask a sympathetic endo (hopefully Dr Conway) to investigate.

I'm guessing this will be a long and expensive journey...

Thank you so much for your support and help.

[oozlumbird]

That's so kind of you, but please don't go to any trouble. I've bitten the bullet and made an appointment with an endo recommended on this site (who is happy to prescribe NDT if necessary and then communicate his findings with my GP). I can have a consultation in two weeks' time, and then his clinic will do all the blood tests I need there and then. Since he is a consultant in a big NHS hospital, hopefully my GP will take his findings seriously.

Fingers crossed...

[Hidden]

Serum ferritin that low is disturbing. Why so low? Iron depletion in itself could cause a lot of your symptoms. You urgently need to know if you have managed to get it up to 70 - 100.

[oozlumbird in reply to Hidden]

Thanks for replying. Yes, I'm surprised the GP didn't check it this time, only haemoglobin, which was normal (though it was normal when my ferritin was 5). I know with iron supplements I got ferritin back up to the 'normal' range last year, but now I know more, that could still be as low as 13! It's confusing when all the symptoms cross over with other conditions, and which do you treat first?! Am hoping the (recommended) endo will be able to make sense of it all, as I'm too tired to fight!

[Hidden in reply to oozlumbird]

OK, so you ring the GP's receptionist and ask for a print out of those results, because you need to know the exact figure for the ferritin. "Within range" is meaningless, as you now know. Treat the iron, you need to know if supplementation gets you up into the above 70 range. If it doesn't, why not? Could be blood loss, heavy periods, for example? Or it could be a malabsorption problem - your body is struggling to absorb iron? That could be an intestinal problem, like Crohn's or celiac disease. Or it might be that you have some chronic inflammatory problem which has led your body to put the brakes on absorbing iron.

Too tired to think. That's standard in severe iron depletion. Post your ferritin results when you get them if you can bear to.