Coming off my medication (NDT)

[Jodypody]

I am not sure what is going on but I’ve had to come off my NDT entirely. I dropped the dose considerably but still high temperature and anxiety plus zero sleep. As a child my mother used to put me on starvation diets and I became bulimic for a number of years or yo yo dieting. After the birth of my second child I managed to convince my GP to trial me on Lev0 as my T3 was under even their parameters and my TSH 3.68 and T4 9.4. Been taking NDT for quite some time as Levo wasn’t enough with what I thought was success. Recently started HRT and felt better. Could it be that I had damaged my metabolism rather than hypothyroidism and the HRT is helping? I feel my bones and joints are thankful and my temperature has not dipped it’s remained normal. I’m on day 3 of no medication I was taking 3 grains prior to HRT if I hadn’t taken my medication my temperature would plummet. Any thoughts shaws ?

[Lalatoot]

Jody For me anxiety and zero sleep plus high temperature at night is a sign of under medication. We are all different! Because the symptoms of over and under medication are similar I would do a blood test to confirm which way your bloods have gone.

I cut my thyroid meds down to almost zero and I felt great. It lasted for 3 months and then I became very ill as my levels were so low. So please be careful.

Now it could be that HRT has sorted something and you will be fine but watch for symptoms and do bloods as I don't want you to end up like me. It has taken 2 years to recover from that adventure!

[Jodypody in reply to Lalatoot]

Yes that’s what I am concerned about that I will come crashing down but my temperature at one point on Saturday was 37.4. I had to do a really tough workout to use up some of the T3. I’m going for a blood test when I get back. The anxiety has gone now. I even tried taking just one grain and immediately had an overactive bowel 😊 the jitters and a high temperature

[shaws Administrator]

Hi Jodypody.

First, I must state that I'm sorry that your mother put you on starvations diets and that could be the reason you're unwell. Some parents have a lot to answer if children suffer.

You also stated that you managed to convince my GP to "trial me on Lev0 as my T3 was under even their parameters".

As I'm not medically qualified I can only respond by what I think or what experience I've had. Regarding stopping NDT, it will take a number of days before you feel that you've none left in your body. One dose can last between one to three days.

Many people when stopping T4 and switching to another replacement, i.e. T4/T3 - or NDT or T3 only, it can take a number of days before you will find any benefit and you should concentrate on your 'symptoms' and if they're being resolved.

Seeing that you've tried several ways to increase thyroid hormones, maybe (if you can get it prescribed) is to trial some T3 only. I know that will be very difficult as doctors will not now prescribe. I'd ask your GP to test both Free T4 and Free T3 and if T3 is low ask to be referred to an Endocrinologist.

I know that Endos have now to retrict T3 due to cost but you might find one whose sympathetic and will put the patient first - even on a trial basis.

I have been like you and other members - we try this and that and disappointed when nothing has improved and you still feel very unwell. If you've also got a family to look after or find work a strain it can be difficult when we've no energy to even think at times.

[Jodypody in reply to shaws]

Thanks for replying shaws. I’m under an endo who is really good with me and knows I’m sourcing my own NDT and trusts my judgement. I spoke to him before I left to go on holiday and he wants me to have a blood test when I get back to see what’s going on. I just thought the T3 element would’ve all but disappeared by now and I’d be freezing cold which is normally what happens and I also get bunged up which hasn’t happened either. Of course if I’d really overcooked it then as you say it might take longer but Sunday and Monday I took only one grain (instead of 3) and now nothing since Monday

[shaws Administrator in reply to Jodypody]

NDT contains T4, T3, T2, T1 and calciton so your blood test will not 'match' as blood tests were introduced for along with levothyroxine

When we have a good and knowledgeable doctor, it does make a huge difference in our confidence, especially when we feel our symptoms are beginning to be resolved.

When adjusting (either up or down) always do so gradually so that you can judge if symptoms are resolving and the dose is doing its job by making you feel well again and symptom-free.

Old-fashioned-doctors - ones who only knew about NDT - concentrated upon the clinical symptoms alone of the patient and adjusted dose slightly up or down until the patient was symptom-free. NDT contains (as I'm sure you know) all of the hormones a healthy gland would produce (T4, T3, T2, T1 and calcitonin) so as blood tests were introduced along with levothyroxine, so any patient taking alternatives the blood test wont correlate and be confusing for the patient. The best way to judge if your dose is optimum is that we feel well again with no clinical symptoms. We'd also not feel we're not hypothyroid any more.

[Jodypody in reply to shaws]

Hi Shaws. I felt so overdosed I tried reducing from 3 to 1but even one grain was giving me a high temperature and the jitters hence me stopping altogether. I’ve been checking my temperature at regular intervals and it’s stayed between 36.5 to 36.8 which is normal for me. Previous to being on hrt my temp would go very low if I was even a 1/4 grain out and I’d be constipated. None of those things have happened I just feel tired as I think my body is recovering from the insomnia that I’ve experienced alongside this new batch. My previous batch of TR Man I was up to 4.25 grains.

[Jodypody in reply to Jodypody]

shaws i think I spoke too soon. I’ve just crashed now pretty much. I’ve just taken one grain and I might take another after dinner tonight too if my temperature doesn’t improve

[shaws Administrator in reply to Jodypody]

That's a pity. It is better to reduce very slowly or increase very slowly to allow your body to adjust to the change-over (usually by 1/4 tablet at a time). Then when you find a 'sweet spot' (you feel good with no symptoms) you should remain on this dose.

Throughout our life we might have to make small adjustments in dose.

When we adjust by 1/4 tablet at a time (either up or down) but not on the same day, and staying on that dose for at least a couple of weeks gradually working up until you begin to feel well. It is easy to 'overdose' or 'underdose and we want 'optimum. We can also be impatient.

I must also state I'm not medically qualified but had to diagnose myself with hypothyroidism 1 hour after GP phoned to tell me I had no problems at all due to the latest blood test. Pity he missed a TSH of 99! I did wonder later on what number he would require to give a diagnosis of hypo.

1 grain is approx equal to 100mcg of levothyroxine.

[Jodypody in reply to shaws]

99 that’s ridiculous! If you were me based on the fact I have been on 3 grains for a while would you take a second gratin at night to make up for the lost doses. I don’t want to swing wildly backwards now

[shaws Administrator in reply to Jodypody]

I am not medically qualified but I think I'd start again from the beginning. Are you aware that 1 grain of NDT is equal to approx 100mcg of levothyroxine? So 300mcg might be a bit too much.

Splitting doses over the day makes life less easy as it would be impossible to take the doses at the same time daily, I should imagine.

To have as 'normal' a life as possible. a once a day dose that relieves all symptoms is more beneficial than splitting doses. We are on replacement thyroid hormones for the rest of our lives so we want it to be as simple as possible. When we adjust our dose we have to allow a certain amount of time to become accostomed to it and we cannot be impatient (although I'm aware we want instant results).

[Jodypody in reply to shaws]

Hi Shaws a quick update. I’m up to 2.5 grains but not having any sleep ( one night was 40 minutes) I’m aware now it was a mistake to stop taking any medication and I’m paying in spades. I run my own company and have 2 children. I really need to get back on track. As I was overdosed on 3 as you suggested I should’ve cut back by a quarter so my thinking now is to go with 2 3/4 as 2.5 doesn’t feel enough. I was up all night from 3am so took my dose at 5.30 and that had a soporific effect and gave me a couple of hours.