Diagnosed under active last year and still trying to figure out this mind boggling condition.
Been having regular retests and adjustments to my thyroxine.
I now am taking 75mg daily.
Probably should add that I have hashis but only know this through the amazing advise I have been given on here. My GP doesn't acknowledge that and dismissed it as soon as I said it!!!
I'm 37 but I promise you my body has aged this last year and I feel like my 86 year old grandmother is fitter, healthier and more pain free than me.
Pain all began in my toes and has slowly affected all my joints. I've read lots on the internet and am convinced my body cannot tolerate Levo.
I was so fed up a few months ago that I stopped taking Levo accidentally on purpose and honestly the pain subsided.
My GP was not impressed as my results increased I think to 1.93 TSH.
I need to go back and request my meds be changed but I don't actually know how to approach this with my GP or even what to say I want to be changed to. Please help me.
I seem to get 'fobbed off' very easily
I really can't go on like this.
I know my thyroid needs help by taking the meds but my body is not happy accepting it.
Thanks in advance
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Fibi1907
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I always stick to one variety of Levothyroxine so that I know what is causing a problem. To get correct dose you can alternate doses on consecutive days or cut pills in half.
Have you had vitamin levels checked, most likely it's low vitamin levels that's causing your pain. Check vit D, ferritin, folate and B12. Many with thyroid conditions are deficient.
Only have info on Vit D as was diagnosed deficient and prescribed 800IU altho asked if could access own supplements have as well
(Vitabiotics at most chemists 1000IU) I have readings at 41.9 with a note from the lab to
" discuss at appointment" also recorded is 'New Vit D method in use from 22nd Nov 2016' ( wll check protocol) Note continues "to protect musculoskeletal health 250HVit D should not fall below 25 nmol/Lat any time of year. 25-50nmol/L may be insufficient for some people. Levels>30nmol/L: Increased risk of toxicity
I presume vit D is a UK lab result? Without the lab ranges I can't be sure so you need to get them. Make a habit every time you have blood tests to get results with ranges and keep a record. Or register for online results.
NHS will tell you OK even if at bottom of range. Their reasoning seems to be, prevent people from dying but never mind if they don't feel well. With thyroid disease, vitamins need to be half way through range. Top of range for B12.
Doctors don't know about checking vitamin levels usually so you'll have to ask. Treating hypothyroidism seems reveal vitamin D deficiency in particular. Quite a few papers on Internet linking thyroid conditions with vitamin D deficiency.
I have to be honest I started supplementing earlier this year but I ended up getting into such a muddle about what TO take and WHEN to take it that I couldn't cope and gave up.
Stupid stupid me as now here I am again still battling with pain and feeling pretty sorry for myself and I've only myself to blame.
I will take just one brand now of Levo and see if that makes any difference.
I will also start my VIT d again and b12 but could someone remind me of the best time to take them??
You mustn't blame yourself! It's not really your job to know all this. It's supposed to be your doctor's job. But, as they haven't got a clue, we have to do their job for them!
Make yourself a chart and stick it on the wall, or the fridge, or something, showing when you should take what. When do you take your levo? In the morning, one hour before eating or drinking anything but water? If so, take your vit D with lunch - but make sure you have plenty of fat with that meal, because vit d is fat soluble. And, you should be taking vit K2 - MK7 with the vit D3, because taking D3 increases absorption of calcium from food, and the K2 makes sure it gets into the bones and teeth, and doesn't build up in the soft tissues. It would probably be better to take the K2 with dinner, because it is also fat soluble.
And, when you are taking vit D3, you also need to take magnesium - which you could take just before bed - but it does need to be taken about six hours away from thyroid hormone. There are lots of different types of magnesium, but you'd probably do best on magnesium citrate. You can take up to 400 mcg. But, start low, and build up slowly, because it could have an effect on your bowels.
It's a well-known phenomena that stopping your levo makes you feel so much better. No-one knows why. But, it doesn't last. Your TSH will rise and the symptoms creep back in. Just stopping taking it, is not the answer. You say that your dose has been adjusted regularly. What does your doctor test? Just the TSH? If so, then that is why you aren't getting better. But, I don't suppose your doctor really understands thyroid, not many of them do. You need at least your FT4 tested, if not your FT3. It's quite possible that you are now under-medicated, but your TSH won't necessarily tell you that. You need proper testing to know exactly where you are.
The alternatives to levo are T3 and NDT. But, it's very doubtful that you will get either on the NHS. Possible that your doctor has never even heard of them! You could buy your own, but that will probably mean self-treating. Are you up for that? If so, it would be best to get your own private testing done before you start.
It might be an idea to retest to get current levels, but based on the results you've given:
Vit d - 45 (can't remember the range although GP said it's fine. I'm Asian, parents from India.
As you're in the UK this is probably nmol/L which is the norm here. The recommended level is 100-150nmol/L according to the Vit D Council. Just in case the unit of measurement is ng/ml then the recommended level is 40-60ng/ml.
Assuming it is nmol/L you need to supplement and my suggestion at this point would be 5000iu daily for 2-3 months then retest. SlowDragon has mentioned 2000iu but that is my maintenance dose, and if I don't take it 7 days a week my level drops. So you can decide what dose you wish to take. Also bear in mind this information from the Vit D Council
Are certain people more likely to have vitamin D deficiency?
There are some groups of people that are more likely to have vitamin D deficiency. The following people are more likely to be lacking in vitamin D:
People with darker skin. The darker your skin the more sun you need to get the same amount of vitamin D as a fair-skinned person. For this reason, if you’re Black, you’re much more likely to have vitamin D deficiency that someone who is White.
So you may need to supplement all the time but retesting twice a year (November and March) would be good to make sure you stay at the recommended level by adjusting dose. You may find that your maintenance dose is 2000iu daily, it's trial and error. You can retest with a home fingerprick blood spot test from vitamindtest.org.uk/
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Vit D can be taken any time of the day as long as it is with some dietary fat and four hours away from thyroid meds. Some people find taking it in the evening affects their sleep.
**
Ferritin - 37 (15-300)
Ferritin needs to be half way through it's range. With your level it will be making you feel quite unwell, and thyroid hormone can't work.
If your GP wont prescribe iron supplements, it's easy enough to buy Ferrous Fumarate from Amazon and you may need one tablet twice a day, retesting after 3 months. It's important to check your level as too much iron is as bad as too little.
If you do take iron tablets then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
You will need to space them out, four hours away from thyroid meds/two hours away from other supplements and absorption is better on an empty stomach. If you get stomach upset then you should take them with food.
I couldn't tolerate iron tablets and raised my ferritin by eating liver regularly, which means there's no problem with timing like there is with tablets. Maximum amount of liver is 200g per week. Also including lots of iron rich foods will help apjcn.nhri.org.tw/server/in...
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B12 - 465 (180-700)
Your B12 supplement should be sublingual methylcobalamin lozenges. You can take them with or without food as they bypass the stomach, but it's best to take them no later than lunchtime as it can be stimulating and taking it later in the day may affect your sleep.
When taking B12 we need a good B Complex to balance all the B vitamins so make sure you take that too, again take before lunch because of B Vitamins being stimulating, and if a tablet or capsule it will be best with food.
**
So -
B12 - sublingual - with or without food no later than lunchtime - a couple of hours away from thyroid meds
B Complex - capsule/tablet - with food no later than lunchtime - a couple of hours away from thyroid meds
Iron tablets - four hours away from thyroid meds and two hours away from any other medication and supplements. On an empty stomach for best absorption, with food if you can't tolerate it on an empty stomach.
Vit D - with the fattiest meal of the day or dietary fat of some sort. Four hours away from thyroid meds.
K2 - an important cofactor of Vit D - take with dietary fat like Vit D, can be taken at the same time if enough fat or if you use softgels containing oil.
Magnesium - an important cofactor of Vit D - four hours away from thyroid meds, best taken in the evening as it's calming.
Yes, personally I think sticking with one brand is the best. If you do well on one brand, and have it changed and find you don't get on so well or have side effects, ask to be put back on to the brand you do well on.
Your Levothyroxine is T4. Maybe you are thinking of T3 that is mentioned here quite often. Chances of getting that prescribed now are pretty close to zero as it is extremely expensive and the NHS wont pay for it so it's being recommended to be removed from the prescribing list.
To know if you have a need for T3 you need to know if you convert T4 to T3 well enough or not. To know how well you convert you need to have FT4 and FT3 tested at the same time.
I've just seen that you are Hashi's. Don't know if you've already been given information about this, but if you haven't here are some links
Thyroid antibodies attack and gradually destroy the thyroid. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Thanks so much SeasideSusie, your knowledge has been so helpful.
I was meant to spend my bank holiday enjoying the sunshine in the garden but instead I have been in the living room researching how to get to the bottom of my pain and manage better with this condition.
I swear I'm still in denial that I have a lifetime need for medication 😔
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