Levo reduction and joint pain

[Jacarilla]

I’m quite new here and haven’t worked out how to search previous post so please forgive me if I’m repeating.

I had my thyroid removed 6 months ago and my endo is still adjusting my dose. I had a significant decrease mid December and have noticed joint pain creeping in. This has come to a head as I am away from home at the moment and walking more than usual, I had to abandon my plans half way through the evening yesterday as I was in too much pain. This is quite worrying. This morning having rested overnight I would expect to be recovered but I still feel quite uncomfortable. I will make an appointment to see my endo but wondered if this is normal?

Thank you for your help

[Lalatoot]

Yes normal. I have had a lot of joint pain over the years at various doses and levels.

[SlowDragon Administrator]

Previous post with results

healthunlocked.com/thyroidu....

Are you still on 75mcg levothyroxine per day

TSH too high

Request dose increase to 75mcg and 100mcg alternate days (or cut 25mcg tablets to take 87.5mcg daily)

Retest in 6-8 weeks

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Request vitamin D, folate, ferritin and B12 testing

What vitamin supplements are you currently taking

[Jacarilla in reply to SlowDragon]

Yes still on 75mg which had solved my hyper systems but I’ve never suffered with such severe joint pain. I am taking Vit D, calcium and magnesium glycinate. My endo requested a review early May with full blood (including those things you mentioned) test prior. I intend to bring this appointment forward. I’m just a bit shocked that being hypo can have such a severe effect on my joints! I can barely walk!

[SlowDragon Administrator in reply to Jacarilla]

Being under medicated even by a small amount can leave you extremely unwell

On levothyroxine TSH should always be under 2

Most people when adequately treated will have Ft3 at least 50% through range and usually if just on levothyroxine, Ft4 will be at least 60-70% through range

ESSENTIAL vitamin D, folate, ferritin and B12 are at GOOD levels

Anxiety, insomnia are frequently hypothyroid symptoms

Important that Ft3 is at good level

Many people can’t tolerate Ft4 too high

Good vitamin levels improves conversion of Ft4 to Ft3

Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test

[greygoose]

Depends on your definition of 'normal'. But, given that joint pain can be a hypo symptom, and your endo has reduced your levo by so much that you have become hypo again, it's hardly surprising if you have hypo symptoms again. But, I wouldn't call that normal. Did he reduce it due to low TSH? If so, he's not doing you any favours. Dosing by the TSH is wrong, wrong, wrong.

[Jacarilla in reply to greygoose]

No he reduced it because I had hyper symptoms, anxiety, jittery and problem sleeping. He told me the TSH level was not so important as it didn’t cause symptoms.

[greygoose in reply to Jacarilla]

Wow! I'm impressed! He sounds like a keeper. But, what were your FT4 and fT3 levels? Because they could also be hypo symptoms.

[Jacarilla in reply to greygoose]

My last results in January were not a full set of tests and was to check how my dose reduction was going

T4 libre suero. 1.68 ng/dl (0.35 - 5.50)

TSH. 4.53 μUI/ml (0.78 - 1.80)

He said he was happy with this as my hyper symptoms had resolved and ordered the full gamut of tests for 3 months hence (end april) but now I’ve run into the joint pain problem.

My full test history is in my previous post.

[greygoose in reply to Jacarilla]

OK, so he's not that good after all, because you are now terribly under-medicated. Your FT4 is only 25.83% through the range! Should be at least mid-range. But, how any doctors could be 'happy' with a TSH of 4.53, I don't know. A euthyroid TSH is around 1, but hypos usually need it lower.

Although I have a sneaking suspicion that you've mixed up the ranges. I've never seen a TSH range of 0.78-1.8!

[Jacarilla in reply to greygoose]

Oops they are indeed the wrong way round!

T4 libre suero. 1.68 ng/dl (0.78 - 1.80)

TSH. 4.53 μUI/ml (0.35 - 5.50)

[greygoose in reply to Jacarilla]

OK, but your TSH is still much, much to high. It's saying you're still hypo.

Your FT4 is now 88.24% through the range, so I imagine you're not converting very well, and your FT3 is low. That's the most important number.

[Jacarilla in reply to greygoose]

I have only just learnt from this forum that I shouldn’t take my levo before the blood test which will have been messing up my results…

My TSH shot up when he reduced my dose from 92mg to 75g … my hyper symptoms resolved and he says he treats based on symptoms and not to worry about the high TSH. Prior to the change TSH was 0.74 and T4 was 1.58

[greygoose in reply to Jacarilla]

Well, sorry, but he doesn't really know what he's talking about. OK, so the TSH is not the most important number, but the FT3 is and he hasn't even tested it. And, when a TSH comes back high, with a high FT4, then he should smell a rat, if he knows anything about it, and test the FT3. That's just basic logic.

Of course, your TSH shot up when he lowered your dose, that's what it's supposed to do. But, now it's too high. And, when you lower your T4 dose, not only does your FT4 go down, but so does your FT3. And, pretty sure that's low now, which is why your TSH is high. And low T3 is what makes you hypo and causes symptoms. Why can't he get that?

[Jacarilla in reply to greygoose]

Thanks for the steer… like I said it’s all new to me and quite confusing.

[greygoose in reply to Jacarilla]

Yes, I understand. But, either you change your doctor to someone who knows a bit about thyroid, or you'll have to learn about it yourself, because this man is going to make, and keep, you ill.

[Jacarilla in reply to greygoose]

Ok I will see if I can see another endo 👍

[greygoose in reply to Jacarilla]

Know your endo before you commit yourself. If you email the TUK office, they can send you a list of thyroid doctors recommended by patients on here:

[e-mail]

[Jacarilla in reply to greygoose]

I live in Spain… generally the standard of health care here is very good and with my medical insurance I can pretty much see whoever I want, so I just need to research to find a good one. 👍

[greygoose in reply to Jacarilla]

Lack of education and knowledge of thyroid is a universal problem. It's hard to find a doctor that knows anything much about it, anywhere in the world.

Are you able to switch doctors freely in Spain? If so, you at least have an advantage over people in the UK.

[Jacarilla in reply to greygoose]

Yes I think I do have that advantage. It’s pretty scary that there’s such a lack of knowledge out there for a medical condition that is not uncommon !!

[greygoose in reply to Jacarilla]

It's one of the most common. but there are all sorts of theories about why doctors know nothing about it. Have a look at this thread:

healthunlocked.com/thyroidu...

[adin]

Hi, my wrists hurt when I'm hypo and when I'm hyper but the pain is in different places. When I take a lower dose my ankles hurt and I can barely walk, when I take a higher dose my ankles don't hurt anymore but the pain moves to the outer lateral ligaments, so I have to hit an exact dose, in my case 115mcg levo and some T3-SR

[Brightness14]

Yes I had pain after having my TT six years ago. Before it was removed my thyroid was working normally but with a lump. I never knew anything about the thyroid but was very ill for the first six months on Levo, various doses.Then I joined this site, read a lot and put myself on thyroid s which I still take and feel well.

It did take around two years to adjust the does exactly right. I remember not being able to get up from the floor without help being on Levo.

[Jacarilla in reply to Brightness14]

Do you take this alongside levo? I’m trying to inform myself but it’s early days for me and I’m still quite confused.

[Brightness14 in reply to Jacarilla]

No I never took the two together I started with just a half twice a day, i.e. 1 grain to start with. After about 10 days I added another half making 1.5 per day.The Levo stays in the body for some time it's fine to go onto NDT.

[humanbean]

You are very under-medicated with a dose of 75mcg Levo with no thyroid. And your TSH is far too high, which also shows you are under-medicated.

One thing doctors seem to be unaware of is the TSH of people who are healthy with healthy thyroids. You'll find that info here :

healthunlocked.com/thyroidu...

The sources for the info in that link are :

web.archive.org/web/2004060...

eje.org/content/143/5/639.f...

There is no justification for forcing someone with no thyroid to live with lower levels of T4 and T3 than someone with a healthy thyroid.