Thyroid UK
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Recommendations for GP in East Midlands and websites to buy NDT online. Thanks!

This forum is a wealth of information. I wish I had found it sooner!

I was diagnosed with Hashimoto's Thyroiditis aged 30 and have been on levothyroxine (100mcg a day) for the past 12 years. My TSH has nevertheless fluctuated, especially post-partum, and even when I am 'euthryoid' I have still had the classic symptoms of insomnia and very low energy etc, especially during winter. I have had other autoimmune issues: vitiligo and urticaria although these have come and gone, as well as eczema. Both my grandmothers had Hashimoto's and despite treatment were visibly symptomatic so I strongly suspect a genetic issue.

After a stressful event in the Summer, this winter been a disaster for my health: I was diagnosed as hypothyroid in December (TSH 8.9) and half my hair has fallen out, which is now diagnosed as Alopecia Areata. My dose was increased to 125mcg and on 6th Feb I was again 'euthyroid' (TSH 0.46; FT4 17.5). I know they are separate issues but I think they may be linked with stress as the trigger.

I am gluten free and dairy free and take vitamins and supplements (Vit D, B12, magnesium, selenium and zinc) but still don't feel that well. I am now investigating my adrenal function (another post will follow!) but I am also SO READY to try NDT and could really use some help either finding:

a) A sympathetic private doctor in Leicester or around? I've seen Dr McNally at the Spires and Dr Boardman in Warwick mentioned - can anyone send me a private message with their experiences? Or recommend me someone else? I have the list from Thyroid UK but there is no one listed locally;

b) Advice re websites to buy NDT online. Can you pm me suggestions for how to get started on this and how much it might cost for say, six months supply?

c) Also good information re basal temperature testing.

Thank you all so much for your time.

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Sent you a PM.

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Hi there

Have you rechecked some of your vitamin levels - B12, Folate, Vit D and Ferritin/iron panel more recently to ensure they're all okay and even to check vit d isn't too high if supplementing as this is not one you want to have excess of etc?

Also could have an imbalance - such as K2 is required for Vit D. Are you taking a good b complex which has all the other B vits required to support the B12 etc etc

Also could be deficient in other micro nutrients if somehow missing from your diet if dairy free or diet too restrictive as well? Is calcium level okay?

If you are taking zinc - is this level now too high? If not taking with copper can cause imbalance there too as zinc supplementation can deplete copper and so on. Or is zinc still too low if had test showing low in the first place?

It gets so complicated how they all work together and so many things being too low or too high can caue issues with hair loss/growth. If you have the funds, you can get all these tested privately with medichecks or blue horizons?

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Thanks!

These are really helpful questions and admittedly I feel quite overwhelmed by all the vitamin combination issues, as well as what not to take at the same time as levothyroxine.

I have been taking Vit D3 (25 ug) everyday for about 2 years but never thought I could have excess or K2. Is K2 something that you buy OTC? Now I read that excess Vit D can cause insomnia. Sigh.

I've been taking Zinc and didn't know about copper issues.

I was slightly Calcium deficient in my bloodwork in December but the doc just put it down to going dairy free. i wondered whether this may actually have been affected by the Magnesium and Vit D supplementation.

Serum adjusted calcium concentration 2.14 mmol/L [2.2 - 2.6]

As for the others, from my last full blood test 30th Nov:

Serum vitamin B12 level 619 ng/L [220.0 - 700.0]

Serum folate level 8.1 ug/L [2.6 - 17.3]

Serum ferritin level 38 ug/L [10.0 - 420.0]

Am I missing anything? Are there any other relevant iron results that I can share from those full blood panel results?

Looks like I should follow up the vitamin levels with a private test. Thanks for your help...

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Ha, yes I'm only getting to grips with how the vits work also lol!

Hmmm, calcium is the most regulated substance in your body and it's unusual to be low as your body will take from your bones (to their detriment) if necessary - any highs or lows would be good to resolve. What were your calcium (unadjusted) and albumin levels?

Vit d deficiency can cause low calcium as vit d is required to absorb it from your food so definitely a recheck is required. Magnesium is also involved in calcium so maybe need a check there too. Many vit d supplements contain K2 so could just swap to one of these but it depends on what your levels are. Yes, some things that are water soluble like b12 can be taken without much risk of being overdosed as you will pee out the excess but others are fat soluble etc and can be just as bad high as low. However 25ug of Vit D is not a high dose of vit D - is more a maintenance dose so if you were severely deficient in the first place, this wouldn't have been high enough. Low Vit D can cause hair loss problems.

Ferritin can be misleading in many circumstances. If it's really low and under range, I would say definitely need to treat but even though your level is not optimal, it is not severe so you would need an iron panel and full blood count for a clearer picture.

A cortisol saliva test which tests 4 times over the day is the one normally recommended for a good idea of what is going on with the adrenals.

Many people take a combined zinc and copper supplement but I wouldn't take if you don't know if low in the first place (in my opinion anyway) but it does depend on what dose you've been taking though so have a google on it :-)

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Thanks so much for your response.

Re my calcium levels, here were all the results for my bone profile:

Bone profile

Serum albumin level 46 g/L [35.0 - 50.0]

Serum adjusted calcium concentration 2.14 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level 0.91 mmol/L [0.8 - 1.5]

Serum alkaline phosphatase level 39 iu/L [30.0 - 130.0]

In any case, I'll go back to my GP to check my Vit D and as Clutter suggests, for more investigation into my calcium issue.

I was advised by a Functional Medicine doctor to go for a DUTCH test for my adrenal function. Do you think the saliva test is more effective or are they similar?

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Okay - just needed to check as albumin or other protein abnormalities can make the adjusted calcium calculation more unreliable but they seem okay. Yes I would get another bone profile plus vit d, PTH and magnesium (too much magnesium can affect calcium absorption as much as not enough and mess with pth) all together for a clearer picture. If this doesn't identify anything or calcium drops lower, you could always get an ionised calcium test which gives a true measure of the active calcium in your blood. The normal serum tests inactive and active and adjusted calcium is just an estimate of what is active.

I don't know much about the DUTCH test to be honest nor it's reliability so you would have to look into it. From first glance, it seems more expensive but look into whether it is able to look at levels across the whole day like the saliver maybe? Many have issues where morning is fine but goes to high at night and so on.

I agree low calcium shouldn't just be ignored :-)

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Thanks again for your invaluable advice.

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Optimal,

You will need to titrate Levothyroxine and NDT together. 125mcg Levothyroxine is equivalent to 2 grains (120mg) NDT. A good way to start is to reduce Levothyroxine to 50mcg and introduce 1 grain NDT. See how you go for a couple of weeks and if you are comfortable stop Levothyroxine and increase NDT to 2 grains. Hold at 2 grains for 6-8 weeks and have a thyroid function test including FT3 before increasing further.

Your GP should not assume calcium is low because of your dairy-free diet. GP should order a calcium and parathyroid hormone (PTH) blood test to be done together at your local hospital phlebotomy dept as PTH is time sensitive to rule out hypoparathyroidism.

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Thank you so much for this advice.

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