cold under active thyroid

[Baileyleigh123]

I’m cold again all the time does this mean my thyroxine needs increasing i have had an underacitve thyroid for years now I’m currently on 175 mg of thyroxine cheers

[greygoose]

It might do. When did you last have a blood test? What was tested and what were the results/ranges?

You're taking a decent dose of levo (T4), but the question is: are you converting it to the active hormone, T3? You'll only know that if the right tests are done.

[Baileyleigh123 in reply to greygoose]

no greygoose about 5 months ago and the doctor just said it’s fine it’s bang in the middle what ever that meant but I’m sat here with heating on full and I’m cold also could to much thyroxine make you cold I think I’d be better going somewhere private I’ve asked for printout s before but never get any joy x

[greygoose in reply to Baileyleigh123]

The next doctor that say 'wow! it's bang in the middle' when looking at a blood test result is probably going to get my fist up his left nostril! lol Whatever makes the think that is good? Quite honestly, they have no idea how to interpret blood test results, especially not when they're to do with thyroid.

Now, I imagine we're talking about the TSH here, because that's all most doctors test, having no idea what the other 'things' are (actually, they don't even know what TSH is, but never mind that for now). So, an average sort of range for TSH is something like 0.4-4.5, so mid-range would be around 2.5. 2.5 is rediculously high for someone on thyroid hormone replacement!

However, it would not be a good idea to just increase levo without knowing what your FT4 level is. Could be that it is quite high, given the dose you're taking. In which case, the problem probably is that you're not converting that T4 to T3 very well.

So, the best next step would be to get private testing, if you can, to find out exactly what is going on:

TSH

FT4

FT3

Have you ever had your antibodies tested?

I think it would be better to get private tests done before seeing a private doctor. You might not find one that's any better than your currant GP! Just because they charge you an arm and a leg doesn't mean they know what they're talking about.

But the way, who did you ask for the printout? The doctor? Best to ask the receptionist. And, if you don't get any joy, remind her she's breaking the law!

[Baileyleigh123 in reply to greygoose]

I will ring them on Monday because I’m just cold all the time hair going thin again and always tired I will then ask for the results the receptionist said she couldn’t read the results as she didn’t understand what they meant but wouldn’t do a printout for me either x

[Baileyleigh123 in reply to Baileyleigh123]

is it dangerous just to take more thyroxine x

[Buddy195 Administrator in reply to Baileyleigh123]

I certainly would not increase your thyroid medication without knowing your blood test results. Follow advice given to ask for a print out (which you are legally entitled to) then post results and ranges (as laboratories can vary) so members can better advise.

As greygoose has suggested, if your GP is reluctant to test all thyroid levels, I would look to do so privately, ie TSH, FT3, FT4, plus antibodies and key vitamins (ferritin, folate, vitamin B12 and vitamin D). It’s cheaper to test with Medichecks or Blue Horizon than via a private hospital. I email a copy of my blood tests to my private endo prior to my appointment.

[Baileyleigh123 in reply to Buddy195]

thankyou for your advice x

[greygoose in reply to Baileyleigh123]

Difficult to say. But, it might make your conversion worse rather than better, so you'd end up with less T3 rather than more.

[greygoose in reply to Baileyleigh123]

As I said, remind her she's breaking the law and you can take steps to force her to print it out for you. She's just being lazy!

[Baileyleigh123 in reply to greygoose]

lol your probably right I will get them next time I am tested x

[TSH110 in reply to Baileyleigh123]

she’s acting illegally you are entitled by law to a print out of your results youneed to remind her she is out of order refusing. I would write to the head of practice telling them they are breaking tte law in not giving you a print out if you get the brush off again. There’s probably Somewhere you can report them to. If they have on line results and enhanced access you could get them this way if you have access to the internet. It’s a jolly poor show

[Charlie-Farley in reply to TSH110]

Baileyleigh123 , TSH110

Hi I’m just going to chip in and say do not rely on patient access. I and others have experienced more doctoring of records than ourselves. If they realise something puts them in a poor light, or makes them look down right incompetent - it mysteriously vanishes.

That happened to me when I pointed out that I had been left undermedicated for six months and had not been correctly treated. The pertinent records disappeared off my patient access.

However I had taken the precaution of taking screenshots first so that the difference can be seen. I have an original record.

I’m holding onto this as a trump card should I need it in the future. 😂👍

I also resubmitted copies of the missing records to the surgery reception team who just upload everything as a matter of course. Everything that had gone missing were actually NHS blood tests.

I got hardcopies as advised above. 😅

Had I not done this I would have no proof of anything 😱

[TSH110 in reply to Charlie-Farley]

OMG that’s really shocking….but it was Shipman’s typewriter that did for him and the forged will he typed on it, they matched the keys. His only admission, apparently, was to tell the police “I think your looking for this” and he handed them the typewriter. He could well have got away with it otherwise. Good for you for getting those screenshots. It beggars belief what they get up to to cover their backs. Killing old ladies just like him.

[Charlie-Farley in reply to TSH110]

I now am no longer amazed by anything to do with the NHS 😱. There is still so much good but the GP system is very dysfunctional.

[Lulu2607 in reply to Baileyleigh123]

Hi Baileyleigh. When I I started levo last year I was told that once on levo the TSH should be lower than 2 by a clinical pharmacist who was guiding my dosage. ( my TSH started at 161) The range in my local labs is something like 0.5 - 5.0 so really your result should be lower than bang in the middle. I do wonder if Drs read thyroid results in a similar way to other blood results eg creatinine result for kidheys, where bang in the middle might be alright , not too high or too low, but when you're on levo it's not the same approach at all. If you weren't on levo then bang in the middle might be OK but your Dr should be guided by your symptoms since being cold and losing hair suggest you either need more T4 or your conversion (T3) needs looked at as your body is trying to tell you something is not right. In July a GP lowered my dose by 25mcg due to results, even though I protested, and he said retest in 3 months, bit long I know, but in late Sep I started feeing cold again, tired, constipation and pins and needles etc so in desperation I started taking a bit extra (12.5mcg). I'm due a blood test now but when the results come through I will tell the Dr I've recently been taking a bit more as I felt not well on the lowered dose. I don't think I could continue on the lower dose for three months. Symptoms are what should drive your dose, not TSH.

[Baileyleigh123 in reply to Lulu2607]

yes exactly how I’ve been feeling and I’ve took extra a few times and the symptoms stop or are not as bad thankyou for your reply x

[waveylines]

great advice here. I discovered quite a few years ago now that if you don't take charge you don't get better. If your GP was feeling the way you do they would not be sitting back on their laurels! If the receptionists refuse to give you the test results again I would write to the practise manager express your concern and remind them they are legally obliged to give you the results. It's just not acceptable. I am always polite but insistent and once they realise you are not going to let it go they will be more careful. Seems there's a bit of training of reception staff required!! Lol.....

[Baileyleigh123 in reply to waveylines]

thankyou for your reply x

[Cornwaller]

Your GP is confused.

The objective in managing hypothyroidism is to reduce the symptoms of hypothyroidism so the patient feels well. It is NOT to get the lab results, for we assume the TSH, "bang in the middle". Job done! Putting aside that the GP has confused "bang in the middle" with the optimum which is for most people on thyroid replacement therapy around 1.

Grey Goose's advice is, as always, excellent.

A complete set of bloods will indicate the way forward to successfully managing your hypothyroidism .



[Baileyleigh123 in reply to Cornwaller]

thankyou for your reply x

[TSH110 in reply to Baileyleigh123]

I would go further and say ideally TSH should be between 0.2 abd 0.5 and the free t4 and free t3 in the top third of their ranges (none of these are “right in the middle” 🙄) it is the same for T4 and T3 in the top third of their ranges. These figures are from prof Anthony Toft, an eminent endocrinologist - now retired.

Private tests for TSH and free t4 and free t3 aren’t too expensive, if they persist in refusing to give you the print out.

[Baileyleigh123 in reply to TSH110]

thankyou x

[Charlie-Farley in reply to Baileyleigh123]

By the way Baileyleigh123 we call your doctor’s approach treating the lab work (not treating the patient). What an arse 😱

[pennyannie]

Hey there again :

I remember writing to you some months ago - did you manage to get your vitamins and minerals run as well as a full thyroid panel when you went to the doctors ?

Many of us need to get this full thyroid panel arranged privately as it seems doctors are unable to process such details.

If you go into Thyroid UK - the charity who support this forum thyroiduk.org - there is a page dedicated to private blood companies who can even arrange a nurse home visit to draw your blood for you.

So you know to fast overnight and take your T4 mediation after the blood draw. and arrange as early as possible morning appointment and if taking any supplements leave these off for around a week so we can see exactly what your body is holding onto.

We need a full thyroid panel ' bundle ' - to include TSH, T3, T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D.

When with the results simply start a new post on here, with the results and ranges and you will be given considered opinion and constructive ways to improve your health and well being and we will be able to see how well your body converts the T4 into T3 - the active hormone - and amongst other things - responsible for your metabolism and inner central heating system.

[Baileyleigh123 in reply to pennyannie]

thankyou I will look in to it x

[Marz]

If you have time please try and read through Replies on your earlier posts and make some notes. We seem to be going over the same points each time. Happy to helpx🌻

[humanbean]

You might find this thread of interest :

healthunlocked.com/thyroidu...

[elwins]

once the doctor has spoken to me about my blood test they will let me have a copy of results. Doctor always has to check them first. I can get copies shortly after asking for them. They will even print them off while I wait. How’s that for service.