looking for advice

[pollywotsit]

I am 46, hypothyroid and really struggling. I found a goiter just after my son was born in 1997 which was removed in '98. I was left with just one lobe of my thyroid as the rest was affected by the mass. I fought tooth and nail for levothyroxine as my bloods were always borderline but eventually got it. Unfortunately it doesnt really work for me and I was much better on the NDT I managed to source for a couple of years. Unfortunately I havent been able to get hold of anymore and I cant get a private script for it so Im struggling. My hair is falling out, nails are splitting, im exhausted, gaining weight on very low cal diet, the works. Ive cut out grains, sugar and processed food/oils but I still dont lose weight or feel better. I dont know what to do next. I also have severe arthritis which im certain is connected to the thyroid problems and after having 2 toes fused and 2 hip replacements, I need to find a solution.

[pennyannie]

Hello Pollywotsit

Many people on here self medicate as they find Levothyroxine not to be their treatment of choice.

If you post again, simply ask for a private message as to a trusted source of NDT.

I think if you were happy on NDT it just seems sensible to treat with what works for you.

Hopefully, others will contact you direct and you can get back on track with your favoured thyroid hormone replacement.

[SlowDragon Administrator]

Before changing dose you need to get full Thyroid evaluation, so you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if you have been under treated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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, or NDT make sure to take last 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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[SilverAvocado]

I agree with others - use this forum to find a new source for NDT. It's what many of us do. Having had a thyroidectomy myself, and more complex needs, my biggest fear is becoming unable to source NDT.

[pennyannie]

Hello again,

Just to say, a fully functioning thyroid would be supporting you on a daily basis with approximately 100 T4 and 10 T3.

I just think it makes common sense that when there has been a medical intervention, either thyroid ablation or full/part removal of the thyroid, both these vital hormones need to be put on the patients prescription.

Some people get by on T4 ( Levothyroxine ) only, some people simply just stop converting T4 to T3 and some people simply need both these essential hormones dosed and monitored independently, to bring the hormones into balance and to a level of well being acceptable to the patient.

I have a go to book:- Your Thyroid and How To Keep It Healthy - the doctor who wrote this book, Dr Barry Durrant Peatfield, actually has hypothyroidism himself, and it is a very common sense, sometimes funny, easy read on all things thyroid.

We now not have our thyroids to keep healthy, but all the more reason to know what this major gland does so we can attempt to compensate for the loss.

[Hidden]

After my ½ thyroidectomy for a goitre it took several months for the remaining ½ to start working again. I then lasted 15 years or so with remarkably good health until I was struck down by a multinodular goitre needing a TT and RAI. Then on levo for 8 years and was unwell all the time. If your remaining thyroid has failed to recover properly and you are relying on levo then you should look up this trial to learn the truth. Anybody without a thyroid is guaranteed never to get well on levo alone, it would seem, but the trial seems to have been long forgotten and not acted upon as it should surely have been since 2011:

ncbi.nlm.nih.gov/pmc/articl...

I am making enquiries about this with the NHS and various other organisations.