Some advice on medication I’m taking and my levels

[HeatherParker]

I’m 33 female I had graves 10years ago and had TT. I have never been well since life has been awful the wieght gain a absolute joke then constantly been told it’s all in my head I having been taking Levo 200mcg which hasn’t been working for me finally spoke to GP and got a referral to Endo on the NHS who has agreed to a 3month trial of Liothyronine 5mcg to take along side the 200mcg Levo my TSH is 32.5 my T4 is 13 and my T3 3.2 does all of this sound normal I’m also taking X2 calcichew and 1.25 mcg alfacalcidol and 5mcg folic acid

[greygoose]

A TSH of 32 certainly doesn't sound normal at all! Can't say much about the FT4/3 because you haven't given the ranges. But, they sound low.

Why are you taking the calcichew? Have you had your calcium tested? What about your vit D, vit B12, folate and ferritin? Do you have results for all of those?

[HeatherParker in reply to greygoose]

I take alfacalcidol 1.25mcg and X2 calcichew as I suffer from hypocalcemia due to problems with my parathyroid after my TT surgery. They said that My calcium levels are low and I suffer from vitamin D deficiency they said I will need to take these permanently as when they have tried to decrease the does I suffer from they symptoms of hypocalcemia.

I haven’t had my ferritin, folate or B12 tested.

At the moment I take 200mcg of levothyroxine

My TSH is 32.5

My free T4 is 13 range (9.0 - 23.0)

My free T3 is 3.2 range (3.5 - 6.5)

My Endo has just given me a script on the NHS for 5mcg of Liothyronine to take alongside the 200mcg levothyroxine. So hoping this will help with my symptoms of hypothyroidism. I’m only 33 and have been feeling so old and tried like I’m trapped.

[greygoose in reply to HeatherParker]

OK, so did you know that taking vit D increases absorption of calcium from food? And, absorption would rather seem to be your problem, judging by your thyroid results.

However, when taking vit D - and to be quite honest, I'm not convinced that you're taking enough vit d to raise your levels - one should also be taking vit K2-MK7 to make sure the calcium goes into your teeth and bones, and doesn't build up in the soft tissues - and calcium supplements tend to do. You should also take magnesium, because vit D and calcium work together.

Do you get your vit D and calcium tested regularly? You should do, because it's very important that neither of them go over-range.

You really do need to get the other nutrients tested, too, because it rather looks like they might also be low.

So, your thyroid results are very out of range, for someone on 200 mcg levo. Which is why I suggested that you might have an absorption problems. How do you take your levo? Do you take it on an empty stomach, and wait at least an hour before eating or drinking anything other than water? Do you take any other medication or supplements at the same time as your levo?

Given those results, I rather think absorption is your problem, rather than conversion. And, if you can't absorb the levo, you probably won't be able to absorb the T3, either.

[pennyannie]

Hello Heather and welcome to the forum :

In order to have considered opinion we do need to see the blood test results and ranges :

Did you mean your TSH is 3.25 :

Is the T4 13 in a range from 12 - 22 ?

Is the T3 3.2 in a range of 3.1 - 6.80 ?

Do you have any numbers and ranges for ferritin, folate, B12 and vitamin D ?

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. and T2, and a guess estimate of about 10 T3 plus 100 T4, plus calcitonin :

Levothyroxine is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on. I read T3 is about 4 times more powerful than T4 and the average person uses about 50 T3 daily just to function.

Your abilty to convert the T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not maintained at optimal levels so that is why we need these results also so we can see if your issue is related to low conversion because of low vitamins and minerals.

I too have Graves Disease but had RAI thyroid ablation in 2005 - I became very unwell some 8 years later but was denied a trial of T3 - Liothyronine, and also refused NDT. on the NHS.

I now self medicate and buy my own full spectrum thyroid hormone replacement and am much improved.

[HeatherParker in reply to pennyannie]

I take alfacalcidol 1.25mcg and X2 calcichew as I suffer from hypocalcemia due to problems with my parathyroid after my TT surgery. They said that My calcium levels are low and I suffer from vitamin D deficiency they said I will need to take these permanently as when they have tried to decrease the does I suffer from they symptoms of hypocalcemia.

I haven’t had my ferritin, folate or B12 tested.

At the moment I take 200mcg of levothyroxine

My TSH is 32.5

My free T4 is 13 range (9.0 - 23.0)

My free T3 is 3.2 range (3.5 - 6.5)

My Endo has just given me a script on the NHS for 5mcg of Liothyronine to take alongside the 200mcg levothyroxine. So hoping this will help with my symptoms of hypothyroidism. I’m only 33 and have been feeling so old and tried like I’m trapped.

[pennyannie in reply to HeatherParker]

Thank you for filling in the blanks on the blood test results :

I don't know enough to help here and will learn from others as to these results :

It seems to me that your body isn't utilising the T4 - Levothyroxine and perhaps you should be on T3 - Liothyronine only.

Since you have Graves you might like to dip into the Elaine Moore Graves Disease foundation trust website : I only found out about my own situation some 10 years after my RAI thyroid ablation for Graves in 2005. Elaine herself has Graves and went through the RAI ablation back in the late 1990's and then started researching as she found mainstream medical lacking in understanding of her continued symptoms. It is stateside so there are some differences in medical terminology but it does give a better understanding of all things Graves and is an excellent adjunct to this amazing forum, where I found myself looking for help a few years ago.

[Batty1 in reply to HeatherParker]

I don’t know how your even functioning with such a high TSH... oh my gosh I feel so bad for you! I had TT 4 years ago and my weight has just sky rocketed Im about 60 pounds heavier than I was before my TT.... Doctors are just bumbling boobs.

[SlowDragon Administrator]

Please add ranges on these results

Do you always get same brand of levothyroxine?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially when you have low Ft3

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

How long have you been on folic acid?

[HeatherParker in reply to SlowDragon]

I take alfacalcidol 1.25mcg and X2 calcichew as I suffer from hypocalcemia due to problems with my parathyroid after my TT surgery. They said that My calcium levels are low and I suffer from vitamin D deficiency they said I will need to take these permanently as when they have tried to decrease the does I suffer from they symptoms of hypocalcemia.

I haven’t had my ferritin, folate or B12 tested.

At the moment I take 200mcg of levothyroxine

My TSH is 32.5

My free T4 is 13 range (9.0 - 23.0)

My free T3 is 3.2 range (3.5 - 6.5)

I have been on folic acid for 3 months

My Endo has just given me a script on the NHS for 5mcg of Liothyronine to take alongside the 200mcg levothyroxine. So hoping this will help with my symptoms of hypothyroidism. I’m only 33 and have been feeling so old and tried like I’m trapped.

[SlowDragon Administrator in reply to HeatherParker]

Well they need to be investigating why on (Relatively) high dose levothyroxine you still have very high TSH, low Ft4 and Ft3

Malabsorption issues, gluten intolerance and lactose intolerance are extremely common

academic.oup.com/edrv/artic...

Do you have any gut symptoms?

Which brand of levothyroxine are you currently taking?

Has endocrinologist suggested trying liquid levothyroxine?

Likely to have very low vitamin D, B12 and ferritin

Frequently we need to supplement vitamin D at high dose - 2000iu-3000iu daily as maintenance dose not uncommon

Strongly recommend getting vitamins tested

Likely to need T3 dose increased up to 2 x 5mcg or 3 x 5mcg doses ....then retest in 6-8 weeks after last dose change

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

[HLAB35]

So you really need the t3 by the looks of those results.... good job they're finally addressing that.

Curious about your calcium status though.... and your GP's choice of meds. Was it very low after the TT surgery? This often happens when the parathyroid gets affected.

You're taking an unusual form of Vitamin D that is prescribed for people who actually don't want to increase their Calcium levels that much e.g. people with advanced renal failure, that would benefit from just the immunoprotective qualities of Vitamin D. This is probably the wrong sort if you actually do need to increase Calcium. You're taking Calcium supplements which is somewhat contradictory?? Were your vitamin D levels also very low?

Also it's very important to know your levels of ferritin, folate and B12. Forum members are often advised to try methylfolate as it gets levels up much more quickly (it is easier to absorb than folic acid).

N.B. It's very tricky to absorb Levo if you're taking Calcium. It's also likely to block Iron absorption. Most of us take regular vitamin D3 if we have low vitamin D or Calcium levels. We also take the cofactors of Magnesium and K2 that directs Calcium to our bones.

[HeatherParker in reply to HLAB35]

I take alfacalcidol 1.25mcg and X2 calcichew as I suffer from hypocalcemia due to problems with my parathyroid after my TT surgery. They said that My calcium levels are low and I suffer from vitamin D deficiency they said I will need to take these permanently as when they have tried to decrease the does I suffer from they symptoms of hypocalcemia.

I haven’t had my ferritin, folate or B12 tested.

At the moment I take 200mcg of levothyroxine

My TSH is 32.5

My free T4 is 13 range (9.0 - 23.0)

My free T3 is 3.2 range (3.5 - 6.5)

My Endo has just given me a script on the NHS for 5mcg of Liothyronine to take alongside the 200mcg levothyroxine. So hoping this will help with my symptoms of hypothyroidism. I’m only 33 and have been feeling so old and tried like I’m trapped.

[SlowDragon Administrator in reply to HeatherParker]

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, CALCIUM, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[HLAB35 in reply to HeatherParker]

My understanding of alfacalcidol is limited and what I've read from different sources is slightly contradictory depending on who's written it. You must absolutely get vitamin D tested, because you need to be sure that it's getting properly absorbed. The Better You spray kind with K2 may work better if you're very low. If you're relying on dairy to get your Calcium levels up (as well as the tablets) bear in mind that with low thyroid levels it can be very difficult to digest.

Bone broth is an excellent, cheap and digestible source of Calcium and other bone forming minerals. If you're vegetarian, you may want to try a general soluble mineral mix to help your bones, such as the one by Dr Sarah Myhill. For osteoporosis, vitamin K2 and Magnesium are ESSENTIAL for good vitamin D and Calcium absorption. Don't expect your GP to be aware of this!

Try reading up some recent nutritional advice on minerals / vitamins for bone formation. Calcium in isolation would make our bones brittle like chalk. Even iron is needed to make them tougher.

[Fruitandnutcase]

Do you have osteoporosis as well as having had your thyroid removed?

You haven’t given ranges for any of your results but even without a range you can’t feel good with a TSH that high.

Like the others say you need to get your vitamin D, B12, ferritin and folate checked out, they need to be well up in their ranges for you to feel good.

[HeatherParker]

I take alfacalcidol 1.25mcg and X2 calcichew as I suffer from hypocalcemia due to problems with my parathyroid after my TT surgery. They said that My calcium levels are low and I suffer from vitamin D deficiency they said I will need to take these permanently as when they have tried to decrease the does I suffer from they symptoms of hypocalcemia.

I haven’t had my ferritin, folate or B12 tested.

At the moment I take 200mcg of levothyroxine

My TSH is 32.5

My free T4 is 13 range (9.0 - 23.0)

My free T3 is 3.2 range (3.5 - 6.5)

My Endo has just given me a script on the NHS for 5mcg of Liothyronine to take alongside the 200mcg levothyroxine. So hoping this will help with my symptoms of hypothyroidism. I’m only 33 and have been feeling so old and tried like I’m trapped.

[SlowDragon Administrator in reply to HeatherParker]

Good results for Ft4 and Ft3 would be something like

free T4 is 17-19 range (9.0 - 23.0)

free T3 is 5.5-6.0 range (3.5 - 6.5)

TSH will drop significantly on any dose of T3

[Fruitandnutcase in reply to HeatherParker]

I know it’s maybe a bit dramatic but it might be worth pushing for a DEXA scan to check that your bones are in good condition.

I’m a lot older than you - more than double your age - I’ve just been diagnosed with osteoporosis and it turns out that my hyperactive thyroid (Graves’ disease) was a contributory factor just a pity no one mentioned it to me especially as I also have a family history of osteoporosis.

My Pilates teacher who is also a physiotherapist kept telling me I should be asking for scan because of my Graves - unfortunately I didn’t do it, mainly because it’s hard to get an appointment with a GP and then it’s hard to get them to do anything when you do - and I don’t have much faith in some of my doctors anyway (I was told I was ‘needing a holiday’ when I actually had Graves’ disease) believe me I don’t half wish I had followed my teacher’s advice and pushed for a DEXA scan sooner.

As you have problems with calcium and low vitamin D then it is well worth doing something now while you are still young enough to improve things.

Even if your bones are ok which I really, really hope they are because you have more than enough on your plate - I would still look at the Royal Osteoporosis Society links to boosting your calcium and vitamin D intake and make sure you get plenty of weight bearing exercise - they show bone friendly exercises too.

theros.org.uk/information-a...

theros.org.uk/information-a...

Good luck with it all. Don’t give up because once your thyroid is sorted out hopefully you should lose some of your extra weight and feel a lot better.

Keep in touch with the people on here - you’ll get so much good advice. I know I don’t know what I’d have done if I hadn’t discovered this group.