I'm back to update and again request for your expert knowledge and guidance please.
It's been approx 2 months that I've been taking 50mg of levothyroxine (Actavis)
I also take vitamin d3 supplements and magnesium, calcium and zinc.
I'm 36 but feel like I'm in the body of a woman post 80! I ache in almost every joint. My hands, arms, sacrum, pelvis and feet seem to be the worst. Stiffness, numbness and dead/heavy/cold/weak feeling is the only way I can describe it.
I've switched to taking my Levo before bed....been about a week. Not really noticed any huge differences.
It's really beginning to get me down. I've been researching the symptoms and keep coming across fibromyalgia. I'm scared. I'm feeling like a hypochondriac.....I'm not that person.
Please help me. Could the Levo be contributing to this pain??? I have a GP appointment this coming Thursday and need him to help me. Should I request to be referred to a specialist??? I don't want more meds, I was reluctant to even start levo.
Im sorry for the negative post, no one else understands what I'm going through. I know the suppprt on here is amazing.
Thanks in advance
Written by
Fibi1907
To view profiles and participate in discussions please or .
That sucks! !! Fibrolmyalgia and hypothyroid often appear together. Correct thyroid treatment could relieve your aches.
Many people have side effects to levothyroxine. Did pain get worse when you started them?
I person use ndt natural dessicated thyroid. Butyou will need to do a lot of research or have a very helpful doc if you want that I'm afraid. What I'm saying is hang on to your patience this is not a short road.
Other people here will let you know that 50mcg is a very low usual starting dose. Levothyroxine is t4 hormone. Your body converts it to t3. That's why it's recommend you get tsh ft3 and ft4 measured.
Your doctor may suggest higher dose. But yes ask for an endo referral at any point or other. Doesn't mean you'll get it and doesn't mean they will be useful.
I hate to say it but the doc apts where I have got what I needed are the ones I had written preparation of tests I wanted and also I was in obvious distress. Always mention quality of life eg because of the pain I cannot exercise, relationships suffering, unable to work. The less normal functioning you are, the more help you may get.
Hang on in there. I know what that's like. The awful stabbing deep aches and shooting pains and carrying around several tons of lead on each cell of your body. Being unable to touch your own face because your fingers are so cold it's like ice burn and painful.
Good luck. A higher dose may help...unless it is already giving you side effects. Vegetable based anti inflammatory diet.
Yes the aches have definitely come into play since I started meds, I hate it. Struggle to even turn in bed sometimes.
I am hoping I will go to my GP armed this Thursday with the tests I want and he'll change my meds. Just unsure if he needs to change the manufacturer or the dosesge x
Fibi1907 Were you tested for calcium and found to be deficient? If you're not deficient you shouldn't be taking it.
Are you taking K2-MK7 along with your D3 as advised in your last thread? It's a very important co-factor. It directs calcium to where it is needed ie bones and teeth rather than soft tissues and arteries where it causes problems.
It was also mentioned that your ferritin, folate and B12 were all deficient. Are you supplementing those too?
Optimal levels of all these vitamins and minerals are necessary for thyroid hormone to work properly and should also address some of the symptoms you've mentioned here.
No I wasn't tested for calcium but read that when taking magnesium, calcium is also required to help absorption. So I take a magnesium, calcium and zinc supplement.
I haven't started K2-Mk7 either as kinda thought I'd start first with vitamin d3 then add to it, hence why I've not started ferretin, folate or b12 either.
I don't know where to start with this condition. I went to my local health food store (not holland & Barrett) and I come out empty handed and completely mind boggled. I need to be directed in what brand is best, what to buy and when to take it. In fact i feel like I need a degree in this condition.
Fibi1907 OK, let's try and make things better for you.
First of all, hypothyroidism is unlikely to 'get better itself'. Generally, if you thyroid fails (there are a few reasons why this happens) then that's it. If it's autoimmune thyroid disease (Hashimoto's) then the antibodies eventually destroy the thyroid. My hypothyroidism started some time after the birth of my second baby, no idea what caused it but I know it wasn't Hashimoto's. So when our thyroid stops producing the hormone we need it has to be replaced, hence Levothyroxine (the standard hormone replacement).
Levo is T4 which is a storage hormone. T4 has to be converted into T3 which is the active hormone that every cell in our body needs for us to function.
So as far as Thyroid function tests are concerned it's essential (but rarely done) that FT4 and FT3 is tested - that will show us if we are converting T4 to T3 well enough. Also, we need to know if we have antibodies so Thyroid Peroxidase and Thyroglobulin antibodies should be tested. The NHS generally only does the TPO antibodies but even of that comes back negative it's possible that we could have the TG antibodies which they rarely test. This is why we often recommend private testing.
Also, optimal levels of vitamins and minerals are needed for thyroid hormone (our own and replacement hormone) to work and again this is rarely done by GPs and another reason we suggest private testing.
I see from your previous post that vitamins and minerals have been tested and Vit D was deficient and Greygoose suggested supplementing with D3 and K2. Your taking D3 so that's good, now you need to add the K2-MK7. D3 aids absorption of calcium from food and K2 directs the calcium to bones and teeth where it is needed rather than arteries and soft tissues where it causes problems.
Taking calcium unless you are known to be deficient is going to cause an overload. If calcium doesn't get directed to bones and teeth then it gets deposited in places like kidneys (causing kidney stones), arteries - and we certainly don't want calcified arteries, etc. So you can see the importance of taking K2 and not taking calcium unless we need it.
Magnesium is a co-factor of D3 so you need that but it better as a separate supplement and we need roughly 350-400mg daily.
Greygoose made suggestions for B12 5000mcg daily and we usually recommend Solgar or Jarrows sublingual methylcobalamin lozenges which are dissolved under the tongue to get directly into the bloodstream. This can be reduced to 1000mcg daily after 3 months. She also mentioned Thorne Basic B for your low folate, or you could get Jarrows B Right as they both contain the same amount of methylfolate which is what you need to raise your folate level.
For your low ferritin you can take Ferrous Fumarate from Amazon, one tablet twice daikynwoth 1000mg Vit C to aid absorption and help prevent constipation. Finish the packet (usually 84 tablets) then retest as ferritin should be half way through the range and not go too high. Take 4 hours away from thyroid meds and other meds and supplements as it affects absorption.
Supplements are added one at a time, so as you've started your D3 you should add K2 now to get that calcium where it needs to be. Give it a couple of weeks then add the next supplement which I would suggest is the Ferrous Fumarate because you need to get that ferritin up to a minimum of 70 for thyroid hormone to work properly. If all OK and no adverse reaction then you add the next supplement, give it a couple of weeks and add the next. That way if there is a problem you will know what has caused it.
Unfortunately supplements are probably going to be an ongoing necessity to keep your vitamins and minerals optimal, unless they are then thyroid hormone won't work, adrenals will suffer and we remain unwell.
For brands and suppliers I made some suggestions in a reply yesterday which you might like to check out here, 5th reply down I think healthunlocked.com/thyroidu...
I hope that helps with the vitamins and minerals.
If you can't get FT3 and antibodies tested by your GP I suggest you do it privately through Blue Horizon because they are important even though your GP may not think so.
If you're unsure about anything then just ask, plenty of members are happy to help
I followed your post and link and have just ordered my K2 which is being delivered tomorrow. Should I start taking them straight away as am wondering if I need to ask my GP to change my brand or dosage of Levo if it's the lack of K2 causing me problems?
I'm going to stop my 3 in 1 magnesium, calcium and zinc.
Is taking my vit d3 and K2 together every morning and Levo at night ok?? I seem to feel a tad better when I take Levo at night.
Fibi1907 You've only been on Levo for a couple of months and it does take quite some time for it to fully work. Your GP should have retested 6-8 weeks after starting you on Levo and depending on the results should probably have increased the dose by 25mcg. Did he do this?
This retesting/increasing dose should continue every 6-8 weeks until your symptoms subside. The aim of a treated hypo patient is for TSH to be 1 or below or wherever is necessary for FT4 and FT3 to be in the upper part of their respective ranges.
Have you got your latest test results? If so post them for members to comment (include reference ranges). You might need an increase in dose now. You'll only need to change brands if you've had some sort of bad reaction to the one you're taking. I get on fine with Actavis although some people don't.
The lack of K2 won't have caused any problems as far as your Levo is concerned, it's just needed as a co-factor of D3 and to direct calcium to the right place.
D3 and K2 should be taken with dietary fat, usually the fattiest meal of the day (or a cracker with butter, a full fat yogurt, something with 'proper' fat not low fat stuff). Take 4 hours away from Levo.
I tend to take my D3 and K2 after my evening meal but I take my Levo in the early hours of the morning when I need a trip to the loo, that way it's well away from all my supplements.
GP did retest after 6 weeks and was 'happy' with my results. I stupidly didn't request a copy of them but will get them on Thursday.
I was questioning wheather the d3 is causing my joint pain and stiffness and hoping that when I start K2 it will stop.
I can't wait to post my first and last results on here and you guys will be able to give me your opinion on what's going on and what way is best for me to move forward
50mg is still a starting dose, and given your original readings I wouldn't expect you to feel much benefit. In fact people often seem to feel worse when they start on a low dose. You need to go back to your doctor and get your dose increased. It needs to go up in steps every 6-8 weeks until you feel OK.
When I returned after taking 50mg of Levo, GP was happy with my levels (I can't remember what they were). He basically sent me on my way for a lifetime of 50mg Levo and said I'll be A ok on that and may need a yearly check if I want too 😠
I have been tempted to self medicate and increase my dose but worry I'll make my condition or symptoms worse.
I don't feel like I'll ever be able to understand this condition 😖
You mind is muddled as yourthyroid is screwed. But unfortunately your doctor is ignorant and therefore you will have to educate yourself better than them.
Once you know your free t3 free t4 levels, you will be able to see if you are converting. If you are not then a dose increase won't help.
I really cannot get my head around taking more of a drug that is giving you side effects. I guess the rationale is that when you give your body thyroid hormones it stops making any itself completely. So now you are solely reliant on the tiny levothyroxine dose, which could be less hormone than your underfunctioning thyroid was kicking out! Leaving you worse off and more symptomatic. Hence the only way forward is a dose increase. But essentially it's all an experiment.
Hmmmmm I know it's overwhelming vitamins etc. And it's also hard work for the liver to process it all.
You need to ask a naturopath working in the shop for help. Pick the vits that you are most deficient in or the ones you can afford.
Ask the naturopath a question to test knowledge. Ask what the most easily absorbed bioavailable form of b12 they have is.
Hopefully they will show you a sublingual methylcobalamin.
If they manage that then ho on to tell them what you need and why. They might be familiar with it all. Always ask for the most bioavailable forms but then price may sway you. That's okay just do what you can.
It's true that you do need all those nutrients for thyroid to work but don't worry if you are not taking them all right now. Basically settle in for what could be a long journey. You'll have plenty of time for learning and refinement.
It's a LOT of information to start with especially with a hypothyroid brain! !!
Another idea is to make another post asking for helpful doctor suggestions in your area.
If you haven't already then get the hashimitos tests tgab and tpo. You can get all this testing from blue horizons online sent to your house. ..collect blood from a finger prick.
I've ordered K2 now which I will start as soon as it's delivered. I will request for bloods to be taken when I see my GP on Thursday, I just need to put together a list of what I want tested from him.
Not a good idea to self medicate, altho I can understand the temptation. Hopefully you can get in to doc and let him know what's going on, as well as have another blood draw to include vitamins. All this is hard to do when you are in a brain fog. You might want to print out some of the answers here to take with you so you can remember what you need to talk about...or make a list on your phone as you think of things. I hope you r better soon
I'd say its not ideal to self medicate, because you do set up a level of conflict with the medics. But some of us are desperate enough to do it, and if done carefully, with testing, it probably safer than remaining under-medicated indefinitely.
But first of all you need to go back and state your case - it cannot be reasonable to expect you to continue to suffer.
I know it's hard, but the meds will take a while to get into your sysytem completely. Usually about 6 weeks from what my docs say. And then you will be retested to see if an increase is necessary. But if you are having other symptoms then you should talk with your doctor. My experience has been that after six weeks or so when the dose levels off, some of my symptoms remained. This is a tricky chronic disease because ity can take up to a year to find the right combo of meds. It might be time to stop reading about fribro and get back to dos? We can easily freak ourselves out by too much reading.
Do you have thyroid antibodies? If so it might be worth trying gluten free to see if that helps. Not everyone finds it useful, but some do.
Taking Natural Dessicated Thyroid instead of Levothyroxine might help, since the aches started with the thyroxine, but you would be on your own as regards blood tests. However since your doctor seems to be adopting a 'hands off' attitude at least you won't freak him out by giving him a set of blood test results he doesn't understand because you are taking NDT. If I was in your place I would at least give NDT a try - you seem to have nothing to lose except possibly some money. However is seem to me that since you are on 50mcg of Levothyroxine one grain of NDT (=one 60mg pill) might suit you. You can get 1000 x 60mg pills from Thailand for about £50, and a private blood test from Blue Horizon for about £100, so you might well consider that a price worth paying, plus all the help you will get on this forum, which is free but priceless.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
TSH (I have made 2 more posts to add extra Results)
Endo decides to add 25mcg of Levo to 2 grains of Nature Throid
How to add in T3 With T4
