Thyroid experts, I need your wisdom re my test results.

[SirVixofVixHall]

Just had bloods done, I'm on thyroxine (Hashimotos) but feel really rubbish all the time, here are my results, which the GP has labelled "satisfactory"
TSH 3.8
T4 14.1
Ferritin 26
Folate 6.3
B12 538
I don't feel satisfactory, I'm going in next week to chat about it, so any advice welcome.

[Clarella]

Yes Mrst, but might be why Gp could be unhappy to raise.

[Pleasemrstweedie]

But bone density issues is a complete red herring. There's plenty of research to prove it, but doctors keep peddling this nonsense.

It's people with both FT4 and FT3 over range who are
potentially at risk, not people share well enough medicated fir hypothyroidism that they can exercise.

[Clarella]

The only slight problem is that for post menopausal women the guidance is now to keep Tsh a little higher due to the potential for 'bone density issues' However I agree I feel terrible at 2.8.

You could bargain with gp to try 100, retest, and possibly try 75/100 alternate days to boost a little.

I find it can be enough to make the difference. I will add though, since getting b12, vit d and ferritin upI'm noticably better and sometimes currently thinking a little over replaced. Ie before I had to be tsh 0.3 to feel ok, now that level is making me feel a tad over replaced. Also take extra calcium and vit c.

[Pleasemrstweedie]

sayerville your TSH is way too high for someone on thyroxine. You are almost certainly under medicated.

NDT suits me very well, but like all these things, it doesn't suit everyone. As your TSH will be well within range, your first step could be to go back to your GP, tell him you still have symptoms and ask for an increase.

You might be helped by joining the ThyroidUK forum on //www.healthunlocked.com.

[mousmous]

wrt to iron, the liquid formulations don't agree with me. but the normal vitc+iron tablets from the chemist have been fine.

if you need higher doses you an ask for a prescription of duodenal tablets, they only dissolve in the intestine and have fewer side effects,

[SirVixofVixHall]

Does NDT work better then?
Pilates and walking are both things I like, as is gentle swimming, although I can't face anyone seeing the blue white blob that is my body in a cossie...

[sayerville]

Oh forgot to add my face is all puffy and I have weight gain, after seeing before and after on FB of those on NDT I am so tempted.

[sayerville]

Thought I would add my bit being hypo and totally fed up.
On 75mg Levo, have been for about 2 years (after building up). Recent bloods showed TSH 2.8, which according to my GP are 'normal and in the range' it makes me furious as none of my GP's appear to be bothered about anything other than this one test. The fact I am symptomatic is irrelevant I am:

1. Constantly tired with no energy
   
2. Constipated
   
3. Have trouble getting to sleep and never feel refreshed
   
4. Tinnitus
   
5. Aches and pains, esp lower back pain like burning after walking
   
6. Feeling deflated but sometimes anxious about daft things
   
7. Shakiness like a buzzing feeling that's not obvious to see
   
8. Hot flushes, night sweats, have lost ability to control body temperature
   

I'm 53, have gone past menopause and understand symptoms can overlap and are similar and I've felt this was for that long I just live with it.
I have thought about NDT but think it would be too much commitment for this lifelong condition. Quite how I get to my desk for 8am and hold down a FT job I'll never know.
Anyone any ideas (apart from changing GP) to help me?

[paintpot4]

Yes pilates is very gentle, basic walking and also gentle swimming. Even if just two lengths. Gradually it can increase.

Personally I'd wait until you've spent some time on a good thyroxine level (baring in mind it could be tapered further eg a 25 tablet every other day) and know other bloods are good before looking into other forms of thyroxine.

My thyroid was a little out this time last year, on top of 2 years of low iron and occasional thyroid blips. I was very ill before both were adjusted correctly (actually too much thyroxine for a while) and it really has taken 4 months since first slightly good results for iron and a month since first really good result for thyroid and iron - I'm only just beginning to feel 'normal'. But I've lost a lot of previous strength so having to slowly build it up.

I'm expecting to still feel in recovery for a couple more months at these bang on levels tbh.

[Corygal]

Pilates, Vix. It doesn't hurt, which for me is a massive boost, and it strengthens your core, which will ease your poor muscles.

The other thing I did to increase strength and energy - and I know just how unappealing this will sound - was daily walking. 10 min at first (agony, so sore I felt my hipbones were on fire) but I gradually did more until now I walk half an hour daily. It is the best 30 min you will ever spend - as long as you can have a nap afterwards.

[Pleasemrstweedie]

For statutes worth, the worst advice I had was to start on a low dose of NDT and build up. All my horrible symptoms came back. I now know that I could have gone straight from 150mcg Levo to two grains of NDT. From 75mcg you could try going straight to a grain a day. You'd soon know if it was too much.

[SirVixofVixHall]

I can't eat any gluten anyway, as am almost certainly coeliac. I have mulled over NDT, the thought of changing and going through hyper/hypo stages worries me though.
Clarella, thanks, that is helpful to know. i hadn't really thought of it in those terms. Re exercise, I haven't done any for a long long time, because I am so feeble and exhausted. How could I build up strength again in a gentle way?

[PrimalLass]

I'm hypo and giving up gluten was the best thing I ever did. Plus I now buy NDT instead of taking levo (my GP knows and won't prescribe it but does my annual bloods).

[Clarella]

Good vit d not boy d!

[Clarella]

Sirvix, it can take a while to feel better as it takes some time for levels to build up in your blood and then - in my simplistic a level biology view - for all your cells and the muscles etc to be rebuilt, strengthened etc. When starting most things such as vitamins or replacing deficiencies they usually allow for 3 months till effects are felt; depending on the severity of the deficiency and amount of damage it can take longer.

It can take months to a year for muscles to rebuild after severe injury. The issue with thyroid (as with iron tablets) is that it takes a while to get the levels right (ie a Tsh around or just below 1) and then for the body to actually spend time functioning at that level, including starting to recover cardiac strength and muscle strength (partly then helped through graded exercise) which will ultimately help with everything. Hence needing good boy d, good iron, good b12 and folate too.

Try to be patient and kind to your self.

[Dowser]

Marking my place.

I had bloods done two weeks ago. I was told I had extremely healthy blood. Great news but wonder why I'm so shattered, pale etc

I've started taking more magnesium in the form of intestcare by salus. I think that has helped.

When I'm back home I'll have another look at my test results. I asked for a copy.

[SirVixofVixHall]

I've halved the dose of iron and the gut issue is a bit better, I'm hoping I'll get used to it? I don't know if I have a conversion issue, I do know that I have just totally had enough now, of feeling terrible much of the time, and my life being on hold. I'm taking 75 mcg one day 50 the next now, so will do that for a week, or maybe ten days? And then up to 75 a day. How long does it take to feel a bit better? Generally this is how I feel :

1. Shattered. All the time, mentally as well as bodily.
   
2. Flat and apathetic.
   
3. Breathless, I can't walk and hold a conversation.
   
4. Stressed.
   
5. Palpitations (every day).
   
6. Hair either falls out or snaps off, this varies.
   
7. Upper register of voice not great (I'm a singer).
   
8. Cough. Connected?
   
9. Hives, on and off but every day.
   

10. restless legs sometimes.
11. Pale.
12. Sad and fed up.
13. Fatter by the month.
14. Eratic lengthy periods.
Am also peri menopausal, so i don't know how much of the above is due to that. I just feel miserable about it now. I've suspended my life for so long waiting to have more energy, lose weight, feel better. And this has become my life and I've just had enough!

[Pleasemrstweedie]

Ferrous sulphate and ferrous fumarate both gave me constant explosive diarrhoea. Apparently it's quite common.

[tb]

In the US the dose is approx 1µg per pound of body weight, so someone weighing 10 Stone would be on 140µg/day.

Vit D has to be at a decent level for proper thyroid function, and often it's overlooked.

There is always the possibility that someone can't convert the T3 (tri-iodothyronine) to T4 (thyroxine). When that happens, you can take all the thyroxine in the world, your blood results for T4 look great, but your body just isn't working properly. Happened to me, and my endocrinologist agreed to do a test of just T3 rather than a mix of T3/T4.

She now just laughs when she looks at my blood test results, and says that you can't tell anything from them. I found her from a recommendation from someone on a France forum, and she's in Limoges.

When I was in the UK, I used to see a professor and Manchester University.

The US site about thyroid with Mary Shomon is good for information and articles.

[SirVixofVixHall]

Does iron give one the runs? I am taking it, but my gut is not happy, could be coincidence of course

[Pleasemrstweedie]

That sounds more like adrenals - getting a second wind later in the evening. If course the adrenals struggle if hypothyroidism is not adequately treated.

[Clarella]

Technically the half life is so long there shouldn't be a kick in affect. If you went away and forgot meds you wouldn't notice for a couple of weeks. However the body has a natural circadian rhythm for t3 and lots of other things - cortisol too I think - so it could be other things.

[SirVixofVixHall]

They didn't test my T3, they never seem to bother, so I don't know how much I have. I don't understand why they don't make thyroxine in patch form, for slow release, as surely having one dose a day is a bit strange for the body? I am always really done in at about 5 p.m. I literally can't properly string a sentence together, I'm struggling now, but later at about 11 I am much more articulate, I've wondered if that is to do with when the dose kicks in.

[Clarella]

That's great, stick with him he's doing it right. Remember you may be able to tweak dosage to 100/75 or 100/125 alternate days. I do think it can take a while to feel fully well though - 6 weeks may show in blood tests but you might not quite feel right. Or you might! If your Tsh is 1-0.5 you should be fine and see how you go for a while.

I'd take a mixture of t3/t4 over natural, but only after making sure my Tsh was really good and ruling out other issues such as ferritin, vit d, b12 and folate. People usually take t3 if they've been found to have a conversion problem.

[SirVixofVixHall]

It is a Viridian liquid iron, will check the dose. I tried spatone a while ago but it seemed to give me a racing heart, may have been coincidence though. I am going to up the Thyroxine dose slowly, at the moment 50mcg one day 75mcg the next, then 75mcg every day, then 75/100 until I get to 100mcg daily. GP wants a re-test in six weeks. He was really nice actually, said with my results there was certainly room for manoeuvre, and that he looked at the patient and how they were feeling and not just the bloods. I went in expecting to have to argue the case for increasing my dose so it was a real relief to have someone sympathetic.
I have pondered over changing to natural thyroid hormone, anyone done that?