How long should you wait before treating subclinical ?

[maplewood]

I know this sounds totally mad but how long could you hold off taking levothyroxine when you are subclinical. Endo wanted me to wait until TSH 10 but i started treatment at 7.1. I am having real problems once again with the meds (long story). Is there a chance for whatever reason i could improve on my own or is it always a slippery slope once you are subclinical ? Also is anyone aware of drug induced Lupus due to levothyroxine ? thanks xx

[fuchsia-pink]

If I broke my leg, I would want it re-setting straight away.

Equally if I had a TSH that far out of range, I would be taking my levo straight away - and checking regularly that I was taking enough.

There's a chance that that broken leg might set itself without medical assistance, but if you're hypo - and especially if you have Hashi's (don't know if you do, but it's very common) I'm not sure you will magically get better without your meds. I certainly wouldn't want to try and find out.

[maplewood in reply to fuchsia-pink]

I am not completely bonkers honestly. I just have more side effects taking the med's than not. My doctors have messed me about such a lot i do not know what or who to trust anymore. Thanks for reply.

[fuchsia-pink in reply to maplewood]

I trust this forum. And diogenes is a well-respected scientist. I understand being mucked about getting optimal meds and sympathise. Is it possible that you haven't suited the brand of levo you have been given?

There are lots of posts on here about not changing brand when you find one that suits, but if you're having problems with the meds you have been prescribed, it might be worth trying different brands - they have different fillers - until you find one that suits. Good luck x

[SlowDragon Administrator]

If you have Hashimoto’s (autoimmune thyroid disease) then treatment should start as soon as symptoms start

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Hashimoto’s can be misdiagnosed as lupus....what makes you suspect lupus?

[maplewood in reply to SlowDragon]

They treated me for lupus in 2013 with hydroxychloroquine. After a couple of years they said my antibodies had changed and I did not have it. I wondered if it was due to the thyroid meds I had just started. I felt really I'll for the 6 years I was taking levothyroxine. The gp took me off for a year and I felt lots better. The problem is my tsh has been steadily rising over the last year. Got to 7.3 and put back on meds. I am on liquid this time instead of tablets. Still getting horrid side effects. Feel worse on it than off. My antibodies have always been negative.

[SlowDragon Administrator in reply to maplewood]

An ultrasound scan of thyroid might be helpful ...

[maplewood in reply to SlowDragon]

They did one not that long ago (maybe about six months) said it looked ok but very small.

[SlowDragon Administrator in reply to maplewood]

So that suggests Ord’s thyroiditis .....rest of the world calls Ord’s thyroiditis Hashimoto’s

ada.com/conditions/thyroidi...

[maplewood in reply to SlowDragon]

They are taking there time finding out lol. Thanks

[diogenes Remembering]

If you have autoimmune thyroiditis, (Hashimoto's) then getting other immune diseases like lupus are more likely. There are cases of lupus flaring up on T4, but one can't tell whether it was the T4 given, or simply that the hormone stimulated your system to begin a lupus episode. Regarding your other problem, not treating with a TSH at your level is a dereliction of duty and care by the doctor. Consult somewhere else if you can.

[maplewood in reply to diogenes]

My antibodies have always proved negative for hashimoto. I cant really consult anywhere else. The endo at the hospital says I didnt need treatment till tsh 10. What if every time I take t4 it causes a lupus flare? Would t3 be a better option to take? Do I have any other options? Thank you

[Nanaedake in reply to maplewood]

When taking levothyroxine you are replacing what your body would normally supply so if you do not have an allergy to the fillers in the medicine then the levothyroxine in your body once ingested is indistinguishable from your own. So I don't see why it would cause any other health condition to flare. If your body starts to function better perhaps you're noticing the symptoms of a coexisting condition and it might not be anything to do with the levothyroxine.

If your vitamin levels are low you might be experiencing symptoms from that and noticing it more as your thyroid function improves. So get vitamin levels tested, B12, folate, ferritin and vit D. Make sure they are optimal, not coasting at the bottom of the range.

[Rhsana in reply to Nanaedake]

And yet a lot of people still have issues taking levo regardless of the fillers. I cannot take synthetic T4 I have tried several times and every time I feel worse for it. I take a combination of NDT and T3. Perhaps it’s worth trying a different treatment to see if that brings your TSH down and helps with your symptoms?

[maplewood in reply to Rhsana]

What happens to you when you take the synthetic T4? Wondering if you are similar to me. Is the NDT available on the NHS or can you only get it privately ? thanks.

[Nanaedake in reply to maplewood]

No, NDT is not available via NHS or at least extremely difficult if not impossible to get doctor to prescribe. Have you checked your vitamin levels? If so then post results on this forum. You really should not consider altering anything until thoroughly checking them out and correcting deficiencies. See Slowdragons posts for further information on vitamin levels, gluten intolerance and other good information.

[maplewood in reply to Nanaedake]

i am already on supplements and have also gone gluten free. The gluten free has made a difference in general but my current situation is the meds. Thanks x

[Nanaedake in reply to maplewood]

I've looked back on your posts and no vitamin levels are given. When did you last have them tested? How do you know if the supplements you are taking are sufficient?

I've had trouble with some kinds of levothyroxine in the past so I know you have to find one that suits you and stick to it as fillers can be a factor. However, I've found it imperative to improve and optimise other aspects of health in order to stay well and changing levothyroxine may or may not be the solution. I couldn't afford to pay for NDT or private doctors so had to find another way to get well.

[maplewood in reply to Nanaedake]

I have my GP ringing me next week and i will ask for an up to date vitamin level check etc. I have just tried the liquid and that is the same and the tablets for me. I am wondering if there is some link to SLE as they did say i had it then then said not. Its a nightmare. Thanks

[Nanaedake in reply to maplewood]

I'm sorry you're having such trouble. It's often difficult to work out what is causing symptoms when you have thyroid disease because the symptoms are so similar to other conditions.

The only way I've found to work it out is to optimise all vitamin levels and then exclude other factors through testing with the help of the doctor. Do you know what biochemical evidence the lupus diagnosis was based on? Have you had other antibodies besides thyroid antibodies tested? You could ask the doctor what else they could test to exclude other factors when you request vitamin testing.

I have found it imperative to maintain really good gut health because that seems to affect all of our body. So, as well as going gluten free, I followed advice for diabetics although I'm not diabetic and went low carb and regularly eat naturally fermented foods. I have full fat organic grass fed dairy products although I've reduced meats.

When I started to feel a little better then I introduced exercise, mainly yoga, Pilates and some weights for strength.

It sounds like something else besides thyroid is going on. Some other factors can affect thyroid function, low vitamins being one factor. Maybe you need to establish the nature of your thyroid condition. For example, do you have thyroid antibodies, do you have an enlarged or damaged thyroid on ultrasound? If you get a better understanding of the type of thyroid condition it might help you work out what to do. If your thyroid was under performing due to low vitamins, prescribed drugs, erratic blood sugars or other factors then correcting those factors with the help of your doctor might be a first step to improvements. Even levothyroxine won't work as well as it should if other aspects of health are out of sinc.

You ask whether it's possible to improve on your own (without taking levothyroxine, I presume). Well, if your thyroid is damaged then its unlikely to recover as its not a regenerative organ but if something is interfering with thyroid function then it might be possible to correct that and improve thyroid function.

Good luck and pursue it because you deserve to feel well again. Keep an open mind, get the full picture, collect evidence, exclude where possible so you have a good basis on which to proceed.

[maplewood in reply to Nanaedake]

Hi, i have only just seen your reply. Thank you so much for taking the time. I know i had positive AA antibodies at the time and something else that i can not remember now. Recently they said my igE was high? They say i have connective tissue disease but don't know which one. I was in agony with my joints at the time and could hardly walk at one point because of the pain. I have always had negative thyroid antibodies and on a recent scan thyroid all ok but very small apparently. I definitely have gut issues have for years and have just sent for some probiotics plus i have gone gluten free. They have always just said it is something to do with the pituitary gland as far as thyroid is concerned. I feel like i am playing private detective most days. Thank You

[Rhsana in reply to maplewood]

I get very symptomatic, hair gets really brittle and I lose a lot, I am very swollen/puffy all over and in may face. I have bad gut issues and aches and pains all over body, bad fatigue and brain fog, bad skin etc. You can ask your GP to apply for NDT through the NHS but it is very very rare that you will find a go to say yes to that and if they do that the NHS accepts the request. Your best bet is going private if you can.

[maplewood in reply to Rhsana]

You sound like my twin. My vitamin levels are ok as been taking supplements. I have also gone gluten free as i realised that did not help my gut. My GP is pretty good but the endo hopeless. I can not see them giving me it . Thanks for that though because that has really helped me and proved it is the med's like i always thought.xx

[Rhsana in reply to maplewood]

Good luck, I hope you find something that works for you. It’s trial and error and ever changing for some. Xx

[SlowDragon Administrator in reply to maplewood]

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe NDT or levothyroxine plusT3

thyroiduk.org/contact-us/

[Nanaedake in reply to Rhsana]

I think you meant to reply to Maplewood. She/he won't see your post because you've replied to me instead.

[Rhsana in reply to Nanaedake]

They saw it, thank you.