Thyroid UK
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In the dark

Hello I'm still quite new here. I was prescribed Levothyroxine since October 2016 starting from 25mcg and increasing up to 75mcg.

Last summer I managed to get NDT, Low dose naltrexone and T3 to experiment with feeling better. I had to get better than I was, as sleeping in the afternoon was no longer an option. I also found taking more Levothyroxine brought as many negatives as it did positives. (For my 12 year old to go to her chosen school, I had to cycle her there and back, 2 miles, on a very busy road for half a term before she was eligible to join on the school bus. This also meant cycling my two year old daughter, luckily I have an electric bike.)

I was doing well on WPThyroid 2 grains, I went down to 1 grain when I was on the AIP diet. But I'm finding it hard to go grain free and dairy free, let alone all the other extras that the AIP diet excludes. I'm hoping I will be inspired to get there again soon.

In the meantime, WP Thyroid ran out in November I think. Since then I've been on 2 grains of thyroid S, spilt dose. Sometimes I add a little T3 in the morning.

My symptoms are low back pain and stiffness that I often associate with being undermedictated. My neck is not comfortable with movement and I have limited range. I can still suffer from tiredness, dry eyes, leg spasms, involuntary twitches in the body. My neck is tender and sore where I imagine the thyroid gland to sit, this worries me that I might be having active gland damage. I had a scan last year and I only had one nodule scarred and damaged. I think they are used to seeing worse. I am bloated and have digestion issues and am overweight. I take Vitamin D, K2, Vitamin B12, Iron (when I remember as I only have the 6pm window to take iron) and magnesium and low dose naltrexone at night. I was taking Selenium but I ran out and I heard that it might not be good to take if you don't know your levels.

Yesterday I went for a blood test. The endocrinologist I saw for the first time in September had given me the form for the blood test to be done in December. As for the thyroid all that was to be tested is TSH! When I asked about other thyroid tests I learned that my T4 was tested in October when I had my ferritin levels checked and it was 13.4 so deemed fine. I think that there is no interest to test the T3 although I didn't push it. It was so nice to be treated well by a nurse. I can so often feel as though I am a difficult patient. Which makes it really hard for me to ask for the test results. In the past I have had to ask for a print out a number of times and make a drs appointment for that very reason as no one will authorise it otherwise.

I have the endocrinologist appointment tomorrow and I'm apprehensive. I was told that as an NHS endocrinologist she will only interpret my hashimotos from my TSH. I've had the antibodies confirmed and there is no need for that again.

When I saw her in September I was told to take levothyroxine 75mcg, each brand for 6 weeks and if after trying all the brands I could try liquid levothorixine without the fillers. The teva brand that I had was lactose free and I tolerated it far more than the mercury brand. I was prescribed the liquid levothyroixne and I didn't like it. I tried if for a few days and put it in the fridge.

I wonder if I might try it with the T3 but it is very difficult to take something if you know you don't tolerate it as well as NDT. But without further testing do I know that the NDT is doing me good.

The private blood tests seam to range in cost from £28-169 and I really don't have any money to spare. Any advice on schedules or books to read for protocols to follow would be welcome.

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CharlieBrowne,

I'm surprised your endo thinks testing TSH only is sufficient. I doubt many endocrinologists would agree. TSH only tells you what your TSH level is. It says nothing about thyroid levels T4 and T3, or Hashimoto's.

As you are taking NDT and T3 it really is important to know what your FT3 level is to ensure it remains within range. If your endo won't check FT3 I recommend you order your own FT3 test via Blue Horizon or Medichecks. Ideally TSH, FT4 and FT3 will be ordered at the same time but if you are strapped for cash just order FT3. thyroiduk.org.uk/tuk/testin...

High thyroid peroxidase antibodies confirms autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

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Thank you for your guidance. I will make sure I get my own tests done if I can’t manage to get anywhere with my GP.

I have been gluten free since 2012 and recently I’ve found that occasionally eating gluten doesn’t give me the 3-7 day problems it used to. LDN is great! But I’m still much better without gluten. And yes I know I have a dairy issue too.

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Essential to test vitamin D, folate, ferritin and B12

Add results and ranges if you have them from GP or on new post when you have these

Very often too low when we have Hashimoto's.

Endocrinologist sounds unenlightened in the extreme. Of course you need FT4, FT3 and TT4 testing

The fact you find a Teva the best, perhaps you are lactose or dairy intolerant?

Perhaps something to consider. Pretty tough but many find it does help

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

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Sorry I am Charlie Brown too, I just forgot my password and found it easier to make another account. Must be logged in as CB on my computer.

Thank you I will post my results soon.

I think my Endocrinologist doesn’t want to be dealing with only slightly ill patients and with the NHS’ lack of funding - they prioritise. I’m lucky she agreed to see me once more, I expect she will sign me off tomorrow.

I also had a cortisol blood test which is only good for testing adisons disease. But I am better than last September. My youngest now sleeps through the night and I have some childfree time😊.

I’ve recently managed to come off my antidepressants. I tapered slowly and was on 2.5 mg for weeks so I barely noticed when I stopped. So glad to have achieved that.

Again thank you for your quotes and help.

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