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Hashi’s - how many years does it take for thyroid to give up completely?

(18 Posts)
AuldHeathen Mon 13-Nov-17 21:09:04

Does anyone know this? I’ve had Hashimoto’s for years. On treatment since 2002, but aware my TSH was high-ish at 8 for at least the previous 8 years. I couldn’t get any GP to prescribe - I had lots of symptoms. It was horrific. Moved house and new GPs gave me levothyroxine. Gradual increases in doses and TSH was usually around 1. And l felt good.

Then last year it was checked again and l had to go up to 200mgs (from 175mcgs which it had been for 5 years maybe). Then up to 225, 2 months ago up to 250. Bloods rechecked and GP phoned me Friday. Before l increased levo to 250, TSH was around 8. Now 2 months later it’s 20. I don’t have any other blood results. I don’t generally get print outs of results as it’s been okay and been dealt with by this practice. And anyway if GP had given me numbers over the phone l wouldn’t have caught them anyway (deaf and have dreadful brain fog).

I know this is long. Sorry! So the plan meantime is to take the current dose (250) for next 6 weeks and get bloods redone. GP thinks l’ve missed some doses; l think l’ve been complying fine. But l am marking on calendar when l take each dose so l can be sure. So if it’s not poor compliance what else could it be? Is my thyroid function still deteriorating? I’d have expected it to have packed in years ago. Hence my question in the title.

Other options - poor absorption? That’s complicated. At times I’ve made sure it was on empty stomach, but not always. No doctor has ever said that’s how to take it. Can anyone point me to research material on taking levothyroxine on empty stomach? Thanks for getting to end!!

moomoo222 Mon 13-Nov-17 21:16:55

No answer I'm afraid but watching with interest. I was diagnosed 8 years ago, but scans showed long term scarring - I think I'd had it all my adult life (for 20 years or more). I started on 25mcg, gradually built up to the 175mcg I'm on now, seems to go up every year. I'd heard it might be more effective on an empty stomach, but only anecdotally.

AuldHeathen Mon 13-Nov-17 21:23:45

That’s interesting. One doctor thought l’d had it all my adult life too but l’ve not had it scanned. I’m now 56, was early 40s when first given levothyroxine. My son was diagnosed last year at 18. He had several scans. I did ask his endo whether we should take it on empty stomach. He gave a slightly gittish answer. ‘ No, all patients need is to be on the correct dose and be listened to’. hmm

Floralnomad Thu 16-Nov-17 17:43:48

I’d ask for a referral to an endocrinologist if you don’t have one already as it sounds like you’ve gone past the point where the GP can help and you need a specialist .

AuldHeathen Thu 16-Nov-17 21:07:17

Yes, Floral, l think that too. No doubt l’ll be sent to the endo my son sees. He was referred due to his age, mahoosive goitre, and it’s strange shape. But we’ll see after the next set of bloods.

Floralnomad Thu 16-Nov-17 21:09:29

I’ve just seen an endo privately maybe worth going down that route for a consultation and some bloods , working from what I paid that would cost about £500ish for the initial workup .

AuldHeathen Fri 17-Nov-17 18:15:55

I don’t know. £500 would be a lot here. I’ll wait and see what the next blood test gives us.

AuntyElle Sat 18-Nov-17 10:19:17

OP, there is a lot of information and help available on healthunlocked.com/thyroiduk
Have you looked at the possibility of natural dessicated thyroid instead of levo?

AuntyElle Sat 18-Nov-17 10:21:28

You can post your test results on the forum and people will help out (usual disclaimers obvs). I’d definitely do that before paying to go private, you’ll at least clarify what you want from a private consultation.

WindowWiper Sat 18-Nov-17 10:33:03

It could be poor absorption, OP, I’ve heard of it quite a
few times on Thyroid forums.
It’s been found that taking levo at bedtime makes for better
absorption.
Taking levo meds on an empty stomach or not doesn’t
make a lot of difference, op - keeping to the same routine
is the key so blood tests and meds are consistent.

Ekphrasis Sat 18-Nov-17 10:47:37

Are you taking any other medications or vitamin pills? Hormones? Caffeine? There are many things that interfere with absorption especially reflux remedies and prescribed things.

You need a step by step approach for this.

I’d do a concerted effort to try your best to take at least half an hour before any food in the morning (I find this hard - but it doesn’t make a huge difference to me if I don’t).

Have you been tested for coeliacs? There is a higher incidence of the two going hand in hand, though usually a coeliac later develops ATD. It is possible there’s an absorption issue. Don’t give up gluten till you’ve been tested though.

If your test comes back free you could try a gf diet to see if it makes a difference; some people have an intolerance without the blood markers which may affect absorption. (I didn’t believe this till my mil became very ill indeed and only recovered when she went gluten and lactose free.)

The last step, if these didn’t work, would be to be referred to an endo. It is possible you are one of the few who have a real genetic processing issue with T4. But only an endo could manage that.

(I’m afraid health unlocked do my head in. I’ve been given incorrect advice there. Some quote incorrect science ‘theories’. I am well on t4, and gluten makes no difference to my results. My gp has tested me several times for coeliac without my request. Cutting out milk only affected my iron which went right up!)

Ekphrasis Sat 18-Nov-17 10:48:34

Research showed Levo was absorbed better at night but I found I couldn’t maintain that. Routine is the key, if you need a high amount and are stable, that’s just your amount.

Ekphrasis Sat 18-Nov-17 10:49:50

To add, mil wasnt hypothyroid, just very ill.

AuldHeathen Tue 21-Nov-17 18:26:46

Thanks for all further responses. Well, l’m taking my dose as prescribed and seeing nurse in a few days for other bloods. I’ll ask then about getting a results printout. I am on HealthUnwrapped already. I find the thyroid section very repetitious. I have other AI conditions and have used the site far more for them. Yes, l am on a lot of other medications- and have always tried to take levothyroxine separately.

Interesting about gf diet. It’s been suggested for one of my other conditions. Some people have had good results. I am pretty sure l am not coeliac, but l might try the diet anyway. DH bakes very nice bread though and is unlikely to do gf for me.sad

harrietm87 Tue 21-Nov-17 18:39:22

I was diagnosed at 16 and am 30 now. I gradually increased my dose to 150mcg at 18 and have been on that ever since until I got pregnant this year and have increased it, first to 175 and now alternating 175/200mcg. Expecting to go back to 150 when I’ve had the baby.

I’ve always wondered whether it would pack in eventually though, and maybe pregnancy will do something weird to it.

I do always take mine last thing at night though. Apparently calcium interferes with absorption and I have a lot in the morning - cereal and milky coffee. Could be worth a try.

Ekphrasis Tue 21-Nov-17 21:33:06

I was skeptical about gf if you’re not coeliac (blood test) but since been proven wrong - mil was investigated for pancreatic issues she was so ill, no blood markers found.

I’ve not been able to find hard scientific evidence but thyroid uk and others claim gluten can trigger antibodies that attack the thyroid. Mine went kaput many years ago (I think it took about 2 years) so that makes no sense in my case. They talk about conversion happening in the gut and leaky gut etc... again all I found was that there was a link to low thyroid causing issues with the gall bladder and bile. It never hurts to follow what your gut is saying (ie if a food makes it protest cut back or out) and I think the evidence for probiotics is becoming huge for many things. If there’s a slight intolerance it makes sense that absorption could become an issue.

The gp would basically say that if that’s what you need and you feel better, then that’s what you need. But it’s worth remembering, if you never get to euthyroid that a very few really are t4 resistant, but try everything else first.

I’m usually on 125, a bit more when I took beta blockers (12.5 extra) and now up to 200 while pregnant. I think that might be a bit much - I’m feeling extra energy after a week, which is ok at the moment but I don’t want long term and becoming over active. I think I should be on 175 or a tiny bit extra but it was better to go up quickly apparently. I think I had to take more when on sertaline too.

harrietm87 Tue 21-Nov-17 21:36:26

ekphrasis have you considered alternating days of 175 and 200? That’s what I’m on as at 175 my tsh was 2.4 and they wanted it under 2. It’s now at 1.5 and I’m feeling great. Might be worth a try. I’m 20 weeks.

Ekphrasis Tue 21-Nov-17 21:47:01

Yes I actually think that is the ideal dose; 50% extra of 125 is that exact dose. (Going on the nice guidelines of 30-50% extra). I’m going to see how I go for a week and maybe go back if I’m noticing I’m too buzzy etc. Only started it on Friday and I had just started to feel hypo. I’ve had an odd weekend symptom wise, better today. I’m being tested again in 4 weeks anyway though. They said at the 20 wk scan, and I suggested just before so I go armed with results. I don’t want to leave it longer!

I was 3.5 at 150 so I think they’re wacking it up quickly (they did that in my first pregnancy then adjusted down later).

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