Got to get off Levo, the body and muscle pain is too much.

[Michy1]

This is my 2nd round on Levo @125mg, I stuck it out for nearly 2 yrs, but cannot take any more of the pain and stiffness throughout my body. The pain 1st time round from full removal of my Thyroids was absolute hell, I told the Dr's if they can't sort it out it is not work living. I had never experienced anthing like it, pain for 24hrs a day, for nearly 3 yrs, then I found out about Armour Thyroid and it was a god send. I was back to my self and pain free. But then Armour's prices kept going up and after 2 and a bit years, I had to go back on Levo. Now the pain is too much, not as unbearable as before, but not waiting for it to get to that stage. I need out and fast. But need to know what is the next best after Armour?

[Digitalbluecat]

I have only done well using Abbott Synthroid at 300mcgArmour quality has gone to Hell. I tried compounded from an Apothecary but it was worse than cheap Levo.

I simply can't use generic L-thyroxine as it's poorly absorbed. Best of luck!

[Michy1 in reply to Digitalbluecat]

Thanks for that Digitalbluecat, I will look up Abbott Synthroid, as I have never heard of that one.

[humanbean]

1) Have you tried different makes of Levothyroxine? It is a good idea to keep records of which make(s) you get prescribed for every new prescription and also keep a symptoms list associated with each make. Not only that, but give a score to how bad a symptoms is. So if you get a headache on Brand 1 and it is fairly mild you might want to give it a score of 1 out of 5 or 1 out of 10. If Brand 2 gives you an excruciating headache you might want to score it as 4 or 5 out of 5, or 8, 9, or 10 out of 10.

Some symptom lists you might find helpful :

Short List : thyroiduk.org/wp-content/up...

Long list : hypothyroidmom.com/300-hypo...

2) Have you ever had your Free T3 measured? A full Thyroid Function Test (TFT) should include TSH, Free t4 and Free T3 and, if necessary, TPO and Tg Antibodies. If you know you have had positive antibodies before and therefore know you have Hashimoto's Thyroiditis then you don't need to get them done again, although some people feel better with fewer antibodies so try to find ways and means to reduce them. So if you try to reduce your antibodies you might want to test to know if your efforts are working.

3) You might feel better with Levo + T3 if your conversion from T4 to T3 is poor. You really need some results of TFTs to share with us, because otherwise we are trying to help in a vacuum.

4) Some people do well on T3 only. But it is best to try Levo + T3 before trying T3 only. With no thyroid and T3 only you could get into life-threatening trouble very quickly in the event of an accident. Levo would keep you alive longer if you couldn't get hold of T3.

You might find the profile of this member of interest. She used to be an administrator but no longer uses the forum. But her situation seems to have been somewhat similar to yours :

healthunlocked.com/user/Clu...

5) Optimising nutrients is essential for anyone with thyroid disease of any kind. And I think everyone feels a lot better with optimal nutrients than they do with nutrient levels near the bottom of the range or even below it. The nutrients that are really helpful are vitamin B12, folate, vitamin D, ferritin, and iron. There are others that help too, but those I've mentioned are top priority.

6) If you've been in terrible pain since the day your thyroid was removed have you asked for an ultrasound scan of your throat or an X-ray or CT scan, or even an MRI? (I have no idea which form of scan might be best to identify post-surgical problems.) There might be a physical problem with trapped nerves or constricted veins or arteries, or thick scars causing pain.

[jrbarnes]

I took NP Thyroid last year and it was a really good natural desiccated thyroid brand. I could feel that Liothyronine in it kick in within the hour and it doesn't have a lot additives. Also, it's much cheaper than Armour.

[JAmanda in reply to jrbarnes]

I fancy trying a natural thyroid as I still have a lot of pain. Why did you decide to come off NP Thyroid and trial t4/T3?

[jrbarnes in reply to JAmanda]

I decided to come off NP Thyroid because 2 grains was slightly too much and anything less too little. It was a matter of convenience that I switched to synthetics so that I could tweak the T4 and T3 individually. Personally, I have found the T3 in NP Thyroid to be superior to the synthetics so I won't write off the possibility of a NDT/Levo combo if this doesn't work. My healthcare provider says she has many patients that take a NDT/Levo combo and do well. I also went to synthetics because I'd rather not depend on animal farming for medications and I don't know how the animals are treated and where the porcine is coming from. It poses an ethical question for me, can I thrive while an animal suffers?

[SlowDragon Administrator]

Many people need addition of T3 alongside levothyroxine, especially after total thyroidectomy

Are you male or female ?

Was thyroidectomy due to cancer or Graves’ disease?

First step is to get FULL Thyroid and vitamin testing

See EXACTLY what your issues are

Low vitamin levels are extremely common. Low vitamin D can cause terrible bone and joint pain

Getting all four vitamins OPTIMAL improves conversion of Ft4 to Ft3

Do you always get same brand of levothyroxine

Which brand?

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 if you have poor conversion or are under medicated

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)

If/when also on T3, or NDT 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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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 then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Link about thyroid blood tests

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

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3..........NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)

EXTREMELY important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Add latest results and ranges if you have any

Or come back with new post once you get results

[Hidden]

I have heard of German NDT Thyreogland today, maybe you could try that? You have same reaction as I had on synthetics. I take Armour now, much better, still not right tho. 114 euro for a month

[jgelliss in reply to Hidden]

I too am a TT patient. Was on high dose Synthroid for suppression reasons. I experienced all sorts of symptoms. Palpitations high BP insomnia jaundice anxiety headaches weight issues etc. Adding nutrients and going off gluten dairy was a big game changer for me. In addition lowering my T4 and switching to another brand of T4 and adding some T3 made a huge improvements for me. I will add that T3 did not work well for me if my T4 was not enough for me. If my T4 was lower then I needed it I felt the T3 run out. It also made me feel brain fog fatigued. Since I'm not a good converter T4 to T3. A small dose of T3 makes a huge difference for me. It's very important and helpful to track symptoms with each thyroid meds and vitamin changes.

Wishing you healthy days ahead.

[Hidden in reply to jgelliss]

This is super helpful jgeliss, although I think you did mean to reply to Michy1, not me I feel when my t3 runs out, ft4 dropped to 24% of range from 80%...

[jgelliss in reply to Hidden]

You are right and thank you. I meant in general to make some comments that might be helpful for others that are having a bit of an issue with dosing with T4 and T3 combination. There are many patients that do very well with T4 sole or T3 sole. Best is to see what works the very best for one individually and to respect it.

[Hidden in reply to jgelliss]

Absolutely! And your comment was very helpful to me personally, so thank you for chipping in!

[jgelliss in reply to Hidden]

Your very welcome. Good luck to you for working out your *optimal *.