How Long to Stabilise after Change of Dose

[Judthepud]

Hello again, I read on a website aimed at GPs managing patients on Levothyroxine that physical symptoms resolve fairly quickly, but that symptoms such as depression can take months to stabilise. I'm currently hypothyroid and in the process of increasing my dose of Levothyroxine. Have been suffering horrible anxiety, bordering on panic. Been on the increased dose for 3 weeks now. Can anyone offer me any reassurance? Has anyone else had horrible anxiety/panic while hypothyroid, and how long did it take to resolve. I've posted on this before, so sorry to be a pain, but I'm feeling a bit despondent today

[shaws Administrator]

The phrase above "physical symptoms resolve fairly quickly" leaves me cold as these researchers are making assumptions.

Because most Endocrinologists and doctors have no clue about how to treat us except to look at a TSH result, we remain unwell. Doctors/Endos, I doubt, know any clinical symptoms and are out of their depth altogether.

Most adjust doses up/down willy nilly to try to keep the TSH 'in range' and tell us we will have heart problems if it is low. Nonsense. We need a TSH of 1 or lower - not higher.

Neither do they ever test the Frees i.e. FT4 and FT3.

I will give you two links = symptoms and interpretation of blood results:-

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

[Judthepud in reply to shaws]

Thanks

[Judthepud in reply to Judthepud]

Hi Shaws, thanks for sending me the TUK links. Can you please explain to me how the basal temperature and pulse chart helps to keep track of my general progress so I know what I'm doing.

[SilverAvocado]

For the first part of your question, how long does it take to stabilise, my experience is that its a fairly long time. The rule of thumb is 6 weeks for blood tests, but I've definitely still experienced changes in symptoms after that time. But at a slower rate that in the first few weeks, more like slowly relaxing into it.

I feel like things really kick in somewhere around 3-4 weeks. Before that I think things can be a bit chaotic, and my pulse and blood pressure are quite up an down. I find I can feel almost anything during this time.

For my last 2 increases I've felt pretty weird at the 3 week mark, so maybe there is something in the air!

I've just looked back at your previous post with recent results. You were very undermedicated at that point, and with an increase of 25mcg you will almost certainly be very undermedicated now. It will take a few increases to get you to comfortable levels.

This definitely causes anxiety and distress You are not alone and this is something many of us have experienced. I found it useful to remember this is a symptoms, like dry skin, constipation, and all the rest. I also find mindfulness really useful.

The most characteristic form of this distress is low self esteem, and those kinds of feelings. Remember that you're a sick person, it's not your fault, and your blood results very much show you need more treatment to feel well.

Sorry, I'm not so good at comforting words Hang in there, this will pass in the end.

[Judthepud in reply to SilverAvocado]

Thank you so much for your comforting words

[SilverAvocado in reply to Judthepud]

Take care of yourself. x

[Judthepud in reply to SilverAvocado]

Hello again SilverAvocado, you say that you think, judging by my results, that I will still be very undermedicated on 125mcg of Levothyroxine, but isn't that quite a substantial dose. Don't the majority of people take that or less. How high am I likely to have to go?? I've been reading over your reply again for reassurance, thank you so much for taking the trouble to reply to me.

[SilverAvocado in reply to Judthepud]

You're very welcome Judthepud I hope things settle down for you, soon.

Overall, the doses people need vary quite a lot. Some people need quite a low dose, others high (I am on a very high dose), so there are only rough rules of thumb.

I think of about 200mcg of Levothyroxine as a complete dose - suitable for someone with no functionality in their thyroid. I've heard other people on the forum mention as low as 150mcg. But we see people on the forum all the time with much higher doses than that.

Raising up to a high dose isn't anything to worry about. The most important thing is symptoms, and also an important guide is to look at blood tests and go for whatever it takes to get the freeT3 nice and high.

Have you looked into vitamins and minerals? Folate, ferritin, vit D and vit B12? If these are low raising them can help a lot with anxiety and other symptoms, and improves how your body uses the hormone.

[Judthepud in reply to SilverAvocado]

My TSH had been around 0.99 for a few years, then a routine blood test last September showed that it had gone up to 2.2 (0.27 - 4.20) with a Free T4 of 12 (not sure what the recommended range is for that). My GP put my Levothyroxine up to 150mcg and a few months later I started having symptoms of anxiety, sweating, shaking, diarrhoea, loss of appetite, weight loss etc, and I thought I had become hyperthyroid, so I reduced my dose down to 100mcg and omitted a few days completely to try to sort things out. Then I was recommended by people on this site to have my bloods tested through Medicheck which showed that I was hypothyroid - TSH 12.5 (0.27 - 4.20), Free T3 2.86 (3.10 - 6.80), Free Thyroxine 11.9 (12 - 22.00) [is Free Thyroxine the same as free T4]? Maybe I was never hyperthyroid at all, maybe I just need an even higher dose of Thyroxine, it's just that the symptoms I initially experienced with anxiety, weight loss etc made me think I was hyper, as I never thought my symptoms could be a sign of being hypo.

Also you asked about my vitamins, the Medicheck bloods showed the following: Active B12 133.000 (25.10 - 165.00), Folate [serum] 19.98 (2.91 - 50.00), Ferritin 53.9 (13.00 - 150.00). Do you think they seem OK? I don't have a Vit D result, but I've been taking a Vit D3 supplement for years so hopefully that's OK. Thanks again for your support.

[SilverAvocado in reply to Judthepud]

I don't feel like I know enough to comment on those vitamins. The ferritin (stored iron) looks quite low, but supplementing iron is a bit complicated. I think this might indicate you should ask for a full iron panel to look into it more deeply. Folate may also be a little low, but I don't know enough to be sure. The rule of thumb is that they should be at least halfway up the range, but that's a big simplification. Have you posted these in another thread? If not it might be with making a new post to ask if there's anything that needs acting on.

Vitamin D is still worth testing if you can. Usually deficiencies come from the body not digesting things properly or using a lot of vitamins up when we're ill, so you can still have low levels even with supplements.

Yes, freeT4 is the same as free thyroxine. Thyroxine is a different name for T4. That history with the TSH rising fast is quite surprising. I haven't heard of anything like that happening before. Although both of your freeT4 measurements ate quite similar, 12 and 11.9, and where you've got the range is shows that's under range. Under the range is a pretty low number, people can feel ill even with it just a bit below the middle of the range.

I don't suppose you know the freeT4s or freeT3s from the past when your dose seemed stable? It's possible that your freeT4 had always been quite low, but your body has only just started complaining about it.

Have you looked into adrenal fatigue at all? Acting tired adrenals makes it difficult to change dose, because they struggle to cope with a change in metabolism. They can also give symptoms a bit like being hyper thyroid when trying to change dose.

Is there anything else that changed in your life when you started struggling on your old dose? Another illness? Big change in activity level like a different kind of job? Another medication or change in diet?

I'll look back through your old posts and see if I can spot any clues.

[SilverAvocado in reply to SilverAvocado]

Okay, I think I understand a bit more now what's happened with that history of thyroid panels, the very high TSH was after you'd reduced the dose down to 100mcg? It's still surprisingly high given the change, but as you've been stable in 125mcg for years your body may just be reacting with shock.

Now that I've got more of the picture I don't think this is so surprising. I think your TSH drifting up from 1-ish to 2-ish is just a bit of normal variation over time. Then you tried to increase to 150mcg, and have had a lot of struggle with that, have had to go down to 100mcg for a while, and then everything has got a bit out of whack.

It's not uncommon to struggle with an increase, so the picture makes more sense. It's just a horrible position to be in

You've been advised by others to look into adrenals, and I think you should. This is often the culprit when getting these hyper-type symptoms when trying to raise. And often it happens when people have been a dose that's much to low, so really need the raise. Your body must have adapted to cope with the low dose, and now it doesn't know what to do with a higher dose.

Part of this is to get your vitamins optimal. I see the ferritin had been mentioned in some other threads, and you're taking ferrous fumerate right now? That should hopefully raise it. I spotted that SeasideSusie mentioned sending you a private message in one of your earliest posts. She's very good with vitamins, so maybe ask her to look at your figures and see if you need to do anything.

Then the first step is to get a 24hr saliva cortisol test. The ThyroidUK website explains how to do this.

Then you'll be in a similar boat to me. I'm looking into mine at the moment. Just ordered a book that I hope will be good. I'll give you a couple of links on a seperate comment.

Oops, and the other thing you can do with this struggling to raise is to go super slow with raising. I think you're holding on 125 now to have a blood test in 6 weeks? But if you want to raise after that maybe introduce just one extra 25mcg a week, stay on that a few weeks, then add the next. That kind of speed, or even slower if you feel a reaction again.

[SilverAvocado in reply to SilverAvocado]

Here are a couple of links in looking into myself. Not sure how good they are yet:

rt3-adrenals.org/cortisol_t...

drmyhill.co.uk/wiki/Categor...

recoveringwitht3.com/techni...

[Judthepud in reply to SilverAvocado]

In 2016 I had a hemicolectomy (part of my large bowel removed) for a twisted bowel. Then in 2017 I had more than usually complicated surgery for a large incisional hernia as a result of my original operation, so that was quite a lot for my body to through so I guess this could have had a general effect on me constitutionally.

I don't have any T3 results from the past, but I think my T4 has always been around the 12 mark.

When I first had my medicheck bloods done I posted them all online and somebody did comment that my ferritin was on the low side, but at the time I was half way through a six week course of ferrous fumarate (now finished) so hopefully that should be sorted out. Have never had my vitamin D checked

Also haven't looked into adrenal fatigue. How do you check for that and what's the treatment?

Thanks again for support.

[Judthepud in reply to Judthepud]

Just read though your 2nd reply. Thanks for the tip about asking seasidesusie about vitamins and will consider having my cortisol levels checked.

[SilverAvocado in reply to Judthepud]

That does sound like a lot of stress for your body! It's not surprising your needs for thyroid hormone will have changed a little bit, I think they always do over time anyway.

A freeT4 of 12 is at the very bottom of the range, so you've been managing in a low dose for a long time.

With iron it may be worth having liver once a week to maintain, that is what SeasideSusie recommends, as it can give levels a good boost.

The first step for adrenals is to get a 24hr saliva cortisol test. This is 4 little samples of saliva spread through the day. These are slightly more complicated than Medichecks, as at least one of the good places requires a doctor's name, but ThyroidUK can stand as that.

Then treatment depends on the results. This is a bit less clear cut than thyroid, and more a case of loads of different things to try.

Making sure you get good quality rest is one of the lifestyle things you can do straight away. Restful hobbies like colouring or knitting, gentle walks, taking up mindfulness exercises, things like epsom salt baths, early nights and as much sleep as you can get. Basically the adrenal glands deal with all the low level stress we deal with every day.

[Judthepud in reply to SilverAvocado]

Thanks SilverAvocado

[FancyPants54]

Yes. I get horrible anxiety and depression from changes in dose. I'm woefully under treated at present I think, but even so, once I was out a few weeks into this dose things settled down and the anxiety stopped. I fully expect my next dose rise will do the same for a week or two.

It's horrible. I feel for you. But I do think it will get better because I feel physically knackered now, but not depressed or anxious. I can paint and colour for relaxation and enjoy reading again.

Baby steps. Keep going.

[Judthepud in reply to FancyPants54]

Thanks for your reassurance, I really appreciate it

[Judthepud in reply to FancyPants54]

Hello again FancyPants, I've been reading over my replies again for reassurance. You say that you're undermedicated at the moment. How often do we have to reassess our dose. I was under the impression that once you find the right dose, that should be more-or-less it for life (unless major symptoms return obviously). Also do you have any idea why a change in dose should create anxiety, which I find the most horrible, debilitating symptom? Thank you so much for taking the time to reply to me, I really appreciate it.

[FancyPants54 in reply to Judthepud]

I have not reached optimum yet. I've been subject to an over cautious doctor. I've been stuck on a starting dose for nearly a year, which should not have happened. I've only managed to get to 50mcg a day, everyday, because I've taken it into my own hands. I've just had a blood test, now I'm having a struggle to get the results out of the doctor. Long story.

Anyway, I think I am very sensitive to hormones. My HRT does the same. Any change in dose and I'm all an anxious mess until my body gets used to it. So far, with thyroid meds, every time I have increased my dose (started at 25mcg every other day, then 25mcg for 6 days of the week, then 25/50 every other day for 6 days(!), some messing about with NDT at Christmas) and then I took over and I've been on 50mcg a day every day for 2 months at least now. Each of those changes caused anxiety and depression and also hyper symptoms for a few days whilst my body sorted itself out. I suspect, as we get closer to optimal the anxiety will be less. I hope so anyway.

[Judthepud in reply to FancyPants54]

Omg sounds like you've had an unnecessarily difficult time. Hope you find your optimal dose soon