Urgently need help with NDT

[NataliAAA]

Hi everyone I am wondering if someone can please help me. I had a complete thyroidectomy due to Grave's disease and was put on levothyroxine which made me very unwell. I therefore started self-medicating with Thiroyd NDT and felt great. After 18 months my old batch finished and I started a new batch of this medication but I kept this new batch in the freezer. Straight away after taking it I felt dizzy for nearly 1 month. It got worse each day. On the Weekend I had to go A&E as my heart rate was over 100 and high blood pressure, I couldn't walk, I felt dizzy, shaky, and felt like vomitting, heart palpitations. They did blood tests and TSH was 0.06 and they said T4 was at bottom of the range. They did not check free T3. My previous blood tests on the old bacth when I felt well was TSH 0.16 (normal range 0.3-4.20), free T4 13.7 (12-22), free T3 6.0 (3.1-6.8). So this TSH was slightly lower than previously. A&E doctor said I should ask my GP for alternative treatment and also wrote a letter to my GP. The GP said they will send me to an endocrinologist who can prescribe T3. But the waiting time may be long. My GP said I need to go back to levothyroxine while I am waiting but to take half the dose I used to take or even a quarter. I wonder if someone can help me with suggesting a supplier of NDT (Private message only) as I am feeling awful now. I think it is because I put NDT in the freezer. I can't find any suppliers online. I know levothyroxine will make me ill again. Please help me. Thank you.

[SlowDragon Administrator]

Suggest you get FULL THYROID and vitamins tested NOW

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 as you have Graves’ disease

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 .

If/when also on T3 or NDT make sure to take last half or third 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 all relevant vitamins

List of private testing options

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

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

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 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

Come back with new post once you get results

[hipolion]

Hi, what kind of ndt are you using?

[NataliAAA in reply to hipolion]

Thiroyd.Batch n-1500058

[hipolion in reply to NataliAAA]

I used the same batch and I felt hyper . I had to stop and I had more than half a box left.

I sawp to levo+T3.

[shaws Administrator]

I would have thought keeping NDT or any other thyroid hormones in the fridge would have been o.k. Apparently not when I read the following link:-

biomedres.info/biomedical-r...

excerpt:

"Objectives: The aim of the present study was to investigate the misuse of levothyroxine treatment in patients with hypothyroidism.

Methods: Patients who received levothyroxine treatment were included in the study. Age, gender, duration of medication use, Thyrotropin (TSH) level, regular use of medication, time and manner of taking medication, drug storage conditions and use of additional medication were recorded. Taking the medication on a full stomach or in the evening, occasional use of medication, storing the medicine in the refrigerator, and the use of additional medication were classified as misuse of levothyroxine treatment. According to the levels of TSH: 0.4-4.5 mIU/L was considered a normal dose, while 4.5 mIU/L and above was considered insufficient, and 0.4 mIU/L and below was considered as high dose.

Results: Patients who received levothyroxine pill were included in the study (average age: 53 ± 14 years, average duration of medication use: 48 ± 50 months and females/male ratio: 363/44). 323 (79.4%) of patients stated that they take the medicine regularly. Levothyroxine dosage was found to be sufficient in 235 patients (57.7%), insufficient in 101 patients (24.8%) and high in 71 patients (17.4%). Among the 84 patients which were identified as misusing, 66 (16.2%) patients were taking the medicine on a full stomach, 12 (2.9%) patients were taking the medicine in the evening, 11 patients (2.7%) were storing the medicine in the refrigerator, 17 (4.2%) patients were taking the medicine occasionally, and 21 (5.1%) patients were using one or more additional medications.

Conclusions: Taking the medication on a full stomach or in the evening, occasional use of medication, storing the medicine in the refrigerator, and the use of additional medications were the major factors for insufficient TSH levels. Appropriate usage of levothyroxine pills is crucial for successful treatment.

I hope you feel an improvement when you're able to get your next supply of thyroid hormones.

[Hidden]

"NDT" and "FREEZER" are words that should never be used in the same sentence. The potency will have been destroyed and will worsen over time. You may have some luck by doubling the dose until you can get replacement (ASAP!).

[NataliAAA in reply to Hidden]

But A&E doctor said I am overmedicated because my TSH was lower than 6 months ago :/

I wonder if putting thyroid in the freezer made it stronger or changed the chemical properties of the medicine.

[greygoose]

I very much doubt that putting your NDT in the freezer had anything to do with it. Plenty of people keep their NDT in the freezer, and as long as it doesn't get damp, it's fine. I imagine it was well sealed whilst in the freezer, no? You could have got a bad batch, I suppose, but it could be due to a lot of other things, as SlowDragon explains.