Yet more thyroid advice needed...pleeeeeeease.

[SirVixofVixHall]

So the saga to feel well continues. GP upped my dose from 50 to 100, as my TSH had risen a bit and was 3.8, and I was feeling rubbish. I have been on that for 6 weeks ish now, and I had review bloods this week. The GP wants me to reduce the thyroxine as my TSH is now 0.02 and my T4 26.6. Bloods were taken at 11 a.m. ish.
Thing is I don't feel hyper, I felt better when i first increased the dose, but now I feel as tired as ever. I am foggy brained, mixing my words up, and generally feel rubbish. My liver enzymes were raised, two different types, one is always raised but is more raised than normal, and the other isn't usually raised but is now , so the GP is a bit worried and mentioned a liver biopsy (Horrors!). He wants more bloods in 8 weeks.
So should I drop to 75, or to 75/100? Why do I feel so awful? I felt a bit better initially on a higher dose but that quickly dissipated. I walked to town today with my dd, it isn't more than a mile, and I really struggled on the way back in particular. I am overweight, that has mostly gone on in the past 12m, so could that be affecting my liver? I certainly haven't lost any weight from increasing my dose. I am so fed up of never feeling well.

Tested the thermometer on DH and he was low too, not quite as low as me but still below normal, so clearly it isn't working properly. My heart rate and BP are higher than normal.
GP sent me a letter, he wants to test me for auto immune liver disease, because of the raised enzymes. I am really worried and desparately hoping the test will be negative.

Be a ware that untreated or improperly treated hypothyroidism causes raised liver enzymes.

Please don't assume you are hyper. You really need an FT3 test before you go any further, even if you have to pay for it.

I'm going to ask for a T3 test. I've dropped my thyroxine but I will go private if I must, to get the T3 tested. I know that hypo can cause raised liver enzymes, and as mine are almost always raised (one enzyme), I assumed that was the reason. But now another enzyme is also raised, that my GP thinks is more worrying, and the one that is always raised is more raised than usual. He is testing me for anti mitrochondrial antibodies. I did a quick Wiki and it said that the main sufferers are "middle aged women with another auto immune disease". Great. I'm keeping everything crossed that there is some other reason for the enzyme raise.

Is there a reason why you can't ask to be referred to an endocrinologist? I'd be surprised if your GP refused and would want to know why if he or she did. GPs aren't specialists in this area and it can be more complex than their general practice experience acknowledges.

I've been on levothyroxine for 25 years btw after being diagnosed with graves in my late 20s. At the time I had a fantastic endocrinologist who explained it all, how it related to me, and who did a battery of tests T3, T4, free T3 (possibly not the right letters now - it was a long time ago), TSH, thyroid anti-bodies. Having got everything noted and on the table he told me that the TSH was the most important test going forward - but everything else had been screened and 7/8 of my thyroid removed so we were working from a fairly stable base by the time I was started on thyroxine.

Hope you feel better soon. If you can't get a timely appointment on the NHS, could you pay privately?

Hi Op

I've been on thyroxine for the last 16 years after having a thyroidectomy 10yrs previously for an adenoma (I was only 21 at the time). I am overweight and feel constantly tired and listless.

What interests me about your latest post is your liver issue. I was tested for Anti-mitochondrial antibodies back in 2008 and they were found to be positive, they're been retested since then and are still there in fairly high titres. I have my liver functions tested every 6 months or so and they don't seem to be getting much worse, so my diagnosis of 'Primary Biliary Cirrhosis' (the disease connect to AMAs) has been delayed.

I hope yours are negative, but it isn't necessarily as terrible as the stuff you're reading on Wiki.

My TSH level was 240, I had been referred to ENT for my fearsome snoring. Not knowing the normal range for TSH, I asked the consultant if that was high. He said he never saw one higher!
Is this a world record?
I was extremely unwell at the time , it must be said.
All hunky dory now on 125 mcg. of Levo.

.

I am suspicious of NHS endocrinologists. Don't they have to abide by the same inadequate 'NHS guidelines' my GP was always bangng on about?

I haven't seen a doctor in over a year because I'm so disheartened by my GP's reaction to my becoming more assertive about my thyroid treatment. I've lost faith in the NHS. For ten years I came in dutifully every six months for a TSH test, every time fatter, paler and more tired. Always got a perfect test result. Eventually when I was almost too exhausted to function I found information online and started to get my life back, but my GP seemed personally offended that I was questioning things for the first time in a decade. He told me I could either take all my help from the NHS or none of it, laughed at the idea of referring me to an endocrinologist, because what could an endo do for someone with thyroid problems? He also remarked that the NHS was considering raising the NHS range, the inference being that I should be grateful to get any help as in future I may not qualify. I think TSH over 4 is considered problematic in the UK? And yet in the US, it's lower. It seems to be a fairly arbitrary number.

I buy my T3 online and am feeling much better, but I do worry that I'm not having my health monitored. I just can't face going from one arrogant tit of a GP to another.

Sorry for the mini biog! I suspect I'm having trouble with liver/gallstones, and I've read it can be due to either being undermedicated or having too much T3 in the system. Seems we could be buggered either way

I agree with all of you, thyroid treatment at the GP seems hit and miss at best. I went back and forth for years not feeling well and yet being told my results were "fine". They may have been, but I wasn't feeling fine at all. I am also getting paler and fatter by the year, and this Summer I've been largely indoors while my family lark about on the beach. My smallest dd is 8 and she's aware that I'm not feeling well and has started to really worry about me which I feel terrible about. I think I will have to go private, I just worry about choosing a random doctor. I did that a couple of years ago as I also have chronic urticaria (hives), the Doc I saw was really dismissive and bullish, he put me on a very restricted diet with hardly any fruit or veg, which made no difference and made me feel grim, (I am a probable coeliac, and vegetarian, so there wasn't much left!) based on his theory that I was reacting to salicylates. I'd like to find a doc with a kind manner!

And dotdot, thanks for the reassurance. Wiki was rather scary!
123Mother- Good grief! That is astonishing! I was hardly ticking over when mine was 22, so how on earth where you still alive? I think that the TSH is not quite the accurate measure it is set out as. I didn't feel well with my TSH at 2.8, and yet a friend had a TSH in the 50s before she felt at all tired. Why could this be?

Someone wrote online that the TSH test is like wanting to know about someones health, so you knock on their next door neighbours door and ask them. It's just the cheapest test, I expect.

No I don't think that's right blahblah. I saw Sir Richard Bayliss privately when I was diagnosed with Graves 25 years ago. Once my Graves was sorted (sub total thyroidectomy) he explained that TSH was the best marker and that I would need an annual blood test and probably the same dose for the rest of my life 100mcg with the possibility of a small increase post menopause which I haven't needed yet.

I was given to understand that hypo was quite straightforward to control compared to hyper and luckily that has always been my experience.

My only issue has been with blasted 56 day prescribing and the fiddle of it when an annual prescription should suffice.

I hope you all get the advice you need and would recommend you see an endocrinologist even if you have to pay.

56 day prescribing. I was on 28 days. That's yet another reason why I gave up on the NHS and started self-treating!

But doesn't TSH just test the pituitary gland? Whereas there are tests specifically for measuring thyroid hormones - T3, Free T3, Reverse T3, etc. My GP only let me have the full panel once, and it was the only time I got to understand what was going on with my thyroid - with help from an online community, not my GP. Naturally...

they test absolutely everything at thyroid clinic but seem most interested in tsh and t4 (another graves person here)

You can't treat Graves by TSH. It gets out of synch.

Reading this with interest. I am currently awaiting blood results. Have had my thyroid tested almost every year for the last 7 - 8 years, and it has always been in the lowest 20% of the range. One time it was 11.1 when the range is 11 - 19, yet the GP wouldn't treat. It feels wrong to hope that I might get some treatment. It would seem from this thread though that even once treatment is started it takes a while to get it right.

Who said Graves could be treated with TSH Pleasemrstweedie. TSH is a hormone level in any event, not a treatment. Thyroxine (or its generic names) are given to impact the TSH levels. I don't understand where your comment came from at all.

BerylStreep which hormone has levels of 11-19?

I would advise anyone who is concerned about their levels to ask for a referral to an endocrinology. The British Thyroid Foundation produces very helpful leaflets about all aspects of thyroid disease.

am being treated with carbimazole which has helped start to produce some tsh

That sounds positive MadFatRunner. I recall when I was diagnosed with Graves that I had no discernible TSH. The carbimazole did work but wasn't the right treatment for me because it coincided with me wanting to start a family and wanting everything sorted out quickly and with as few variables as possible.

it's a huge relief, they said at first the only 'cure' was radioactive iodine or surgery but seems I might be a candidate for eventually gradually withdrawing from carbimazole and living happily ever after or until it comes back anyway (can't have RAI, the uptake scan didn't work due to other meds suppressing it)

My surgery was pretty problem free. I was in hospital for four nights (probably because it was private and on insurance) - could easily have gone home after the third night. DH took me home, made me scrambled eggs and went back to work. I was in the car by the Monday, albeit taking junctions slowly because I couldn't swivel my head too fast. Was back at work after three weeks - the GP signed me back as "fit". Never looked back.

I'd have ploughed on with the carbimazole if we hadn't wanted to start a family and if I hadn't been turned 30 but as the diagnosis coincided with that I decided I wanted things fixed in a way that could be controlled as much as possible to provide the safest start for the baby/breastfeeding, etc.
Good luck.

BeaufortBelle I have just dug out my print out - it says 'Free Thyroxine' which is the one that had the range 11 - 19.

The TSH is not really the gold standard that many endos and doctors believe. It is possible for the TSH to come back into range using synthetic t4 but that doesn't mean that good health is stored. There are significant numbers of people suffering from symptoms which doctors dismiss by looking at blood results and not listening to patients.

Even Dr Toft ( former president of the British thyroid association) has stated that t4/t3 treatment may be more appropriate for some individuals with underactive thyroids. I used this as part of my argument to be prescribed t3. Fortunately my endo accepted my request.

I went from have a t4 of over 100 to surpressed ( 0.05). While I felt somewhat better ( I was extremely unwell to start with), I had persistent symptoms - which only diminished when I took t3.

I would urge OP to aka for a referral to an endo - although be prepared to told that everything is fine. If that happens find a way to fight for different treatment.

Beryl street I would urge you to insist that your t3 levels are also checked. This is a more expensive blood test so you might have to go private but if might prove that while your t4 is only just in range your t3 is too low.

Most people feel well when their t4/t3 is optimal - not just within range but in the upper quartile.

Corabell Thanks, I haven't got the numbers of my last test yet, but previously my TSH has been between 2.6 to 3.2, so I suppose not massively high.

I have been told that my last test was satisfactory, however my iron stores are low.