Getting myself in a hell of a muddle!

[Loobs39]

I have been on levothyroxine for 10+ years and never had a problem (well not since the early years) - I have been getting along nicely on a dose of 75 for the last few years. I was at the GP's a few weeks ago about something not related to my thyroid and happened to mention in the conversation that I got tired easily. The GP then said that as I was on a low dose of thyroxine I should go up to 125 to see how it went. I did and found I had more energy but regularly got very easily 'twitchy' and had to get up and walk around and felt anxious a lot? I then had a blood test at her request to see how things were going:

Thyroid function test

Serum TSH level 0.03 mU/L [0.3 - 5.0]; Below low reference limit

Serum free T4 level 15.7 pmol/L [7.9 - 16.0]

Serum total 25-hydroxy vitamin D level 141 nmol/L [75.0 - 250.0]; Between 76 and 150 nmol/L: Vitamin D sufficient.

Serum ferritin level 34 ug/L [15.0 - 300.0]; Ferritin >15 and <100 ug/L. With low Hb and MCV,

a normal ferritin in the presence of inflammatory

changes does not exclude iron deficiency.

I was then told my levels were too low/high and to reduce to 100. I did that but after a couple of days I woke up (I take my levo at night) and couldn't walk round the house without holding onto the furniture I was so dizzy. This lasted about 2 hours then slowly wore off. Next morning the same thing happened so I decided not to take any levo that night. Third morning I was just slightly dizzy, now it has gone away totally. However, at the moment I am taking 25 one night then 50 the next and don't feel great. I will go back to 75 from tonight but I am curious - do the results above indicate that 125 was too high and do you think the dizziness was something to do with that or totally unrelated?

[TiggerMe Ambassador]

Wow, that's a sudden leap! We never recommend changing by more than 25mcg every 8 weeks to allow the body to adjust, dropping back to 100mcg is probably a good move as though you are within range it could be a little too high for you... It might in the end be that you need a couple of days a week on 125mcg but you need to go back a step and sneak up on your optimal dose

Do you have B12 and folate results? Your ferritin is low and you really need a full iron panel to see where you are before supplementing

[Loobs39 in reply to TiggerMe]

I have 3 monthly B12 injections so assume that was fine and my folate is normally fine. I realise my ferritin is very low but it has been for years and my GP says it isn't a problem and so I all I can do is eat plenty of food to help. I do wonder if that is why my hair is thinning - or maybe it's because I'm 68 years old!

[Sparklingsunshine in reply to Loobs39]

Low ferritin is definitely a leading cause of hair loss in women, I've always struggled with low ferritin in the past due to being vegetarian, I used to take iron tablets.

Hopefully Slow Dragon will see your post and be able to give her advice regarding increasing iron levels. Low ferritin can also cause dizziness.

Its good your GP recognised that your Levo dose was low but increasing it by 50mcg in one go was clearly a shock to your system.

25mcg is the most Levo should ever be changed by and some need smaller increments, 12.5mcg or even 6.25mcg. It depends how sensitive you are dose thyroid hormones.

[TiggerMe Ambassador in reply to Loobs39]

When was your last jab? Do you take a good B complex to balance out your B's? How are your iron levels?

When you say folate has always been good, is that a GP ok like your low ferritin?

[Loobs39 in reply to TiggerMe]

I don't take any Vitamin B because I have the B12 shot and worry about having too much of something I don't actually need - I haven't been tested for ages so I need to get that done.

[TiggerMe Ambassador in reply to Loobs39]

I don't think it's possibly to overdo B12 as we just pee it out but you will likely be low in all the other essential B's

[TiggerMe Ambassador in reply to Loobs39]

With fT4 only just at the top of the range on 125mcg I would think you were likely underdosed... any fT3 results?

[Loobs39 in reply to TiggerMe]

No ft3 but I have decided to increase slowly and have a blood test including fT3 in around two weeks time.

[TiggerMe Ambassador in reply to Loobs39]

I'd give it at least 6 weeks before testing to let things settle

[Loobs39 in reply to TiggerMe]

Ah, just realised something I should have mentioned - I take Low Dose Naltrexone and have been taking it for some time - I have heard that it can increase the effectiveness of levothyroxine so maybe the 75 I have been on for years is actually more effective than just taking it without the LDN?

[greygoose]

Too high for FT4, possibly - although increasing by too much in one go won't have helped anything - but as FT3 hasn't been tested, you cannot know if you are really over-medicated. Your doctor is only looking at the TSH, which is the wrong thing to do. So, one way or another, s/he doesn't know much about thyroid. So, be very careful when following his instructions in future.

I agree with TiggerMe going back to 100 mcg and waiting six weeks to be retested is the right thing to do. But you do need to know your FT3 level, because T3 is the active hormone.

[Loobs39 in reply to greygoose]

OK but as I am currently on 25 (because I panicked over dizziness) should I go straight to 100 or take 50 for a few nights, then 75 and then 100 in a couple of weeks time?

[greygoose in reply to Loobs39]

I think the second plan would be the best.

As for dizziness, have you checked your B12? I was awfully dizzy when mine was low. And it doesn't have to be low by very much to cause symptoms.

[Loobs39 in reply to greygoose]

I had been given a B12 shot less than 3 weeks before so assume it's not that which caused the dizziness. The only reason I thought it might be the levo was because it only occurred in the morning when I got up and only lasted a couple of hours or so which caused me to make the connection.

[greygoose in reply to Loobs39]

So, do you still think it's the levo?

[Loobs39 in reply to greygoose]

To be honest, unless it was a weird, short lived virus, I don't know what else it could have been?

[greygoose in reply to Loobs39]

Levo doesn't normally cause problems, unless it's misused. Increasing by 50 mcg in one go was misusing it. But, many, many things can cause dizziness. So, I wouldn't automatically think it was the levo.

[Loobs39 in reply to greygoose]

My husband actually took me to the doctors the second morning because I was stumbling badly and having to hold onto the furniture/walls like the previous morning. He did several checks including making me lie on my back and manipulating my head/neck, blood pressure, checked my sight, checked to see I wasn't showing symptoms of a stroke - nothing. He said that sometimes these things happen then stop, all for no apparent reason? That plus the fact that it, again, had cleared up after an hour or so made me think of my nightly levothyroxine and I didn't take any that night and it was very mild the next morning and gone the following one. I am now taking 50 at night and will increase in a couple of weeks back to my regular 75 then have a blood test a few weeks later.

[arTistapple]

I may be getting more cynical but your doctor is an idiot. He has obviously got through life happily not listening or understanding his patients or this illness. The reason we are on levo is because we need it. It’s not some gamble for them to play. A rise of 50 mcg in one go is far too much. A person who is well and their necessary bits working could probably cope with that without batting an eyelid. However when we need our thyroid medication, our bodies have quite a different response. It’s incredibly cavalier thinking you can jump 50 mcg in one go. I had 25 mcg jump once (very eminent endocrinologist). I was so ill. I was so out of it and physically I was like a rag doll, as if I had cerebral palsy. It’s made me very nervous about doctors and their clear lack of knowledge or indeed ‘care’.

Unfortunately you have sort of copied his style dropping and missing doses etc. Sort of like a ping pong ball. We do this when we are desperate. This will prolong your misery. Find a dose that you hopefully feel a little bit of confidence in and stick with it for at least six weeks and get some private blood testing so you can find out where your T3 levels are.

You may well need other increases or decreases at some point but right now you don’t know.

The other advice given looks good to me. Don’t torture yourself any further with changing your levo again too soon.

[FancyPants54]

I second arTistapple

The dose increase was way too high. You were only on 75mcg so she very nearly doubled it with a 50mcg increase. I take NDT not Levo, but recently I've come to the conclusion that the T3 heavy NDT is leaving my FT4 too low and I need it a bit higher. So I tested first and determined to add just 12.5mcg of Levo a day to my NDT and see if by pulling my FT4 up a bit it would also help to increase my FT3. Day 1 = lovely. Didn't fall asleep once. Felt awake in my brain. Day 2 = anxiety, stressed, more anxiety, out of it, anxious, hot, sweating and on it went. It doesn't mean I don't need to be on 12.5mcg of Levo a day with my NDT, but it does mean I can't achieve it in one swift hit. So I am taking the 12.5 dose every other day and it feels better. Still weirdly hot at times, but everything else is calmer.

The closer we are to our optimal dose, the small the dose increases and decreases should be.

B12 shots will use up your Folate, which is probably why it's low. You should be supplementing it with high dose B12. You also need a good quality vitamin B Complex supplement to take along side it. The B vitamins work together and need to be balanced. The injections throw the balance off.

[McPammy]

Dizziness is a sign of over medication in my experiences. I feel you should get your T3 tested alongside TSH and t4. Make sure you’re converting well enough. Dr shouldn’t have increased to that level so quickly. I also find taking thyroxine at night absorbs higher than in the mornings. I went over medicated once taking my levo at night but taking same dose in the mornings I didn’t ?? !

[Loobs39 in reply to McPammy]

If my next test shows I am too low at 75 I will increase to 100 but taking 25 of it in the morning - that might mitigate any further problems.

[McPammy in reply to Loobs39]

Maybe ask your Dr to prescribe liquid form levothyroxine. I’m on liquid. It’s so much easier to get your dose correct as it’s a liquid you just draw up into a syringe the amount you need and ingest. I split my daily 75mcg dose 40mcg then 35mcg later. It’s much more absorbent than tablet form too. You don’t have to jump 25mcg changes if directed by your Dr. You may only need a 10mcg change. Saves messin about with different tablet strengths. However, it is more expensive. It comes in differing strengths just like tablets.