Endo update.

As some of you may remember I've previously posted on regards to hair loss, tiredness, loss of libido etc. I have no medical issues and no thyroid issues but chose to post on here as have a family history of hypothyroidism.

I had my endocrinologist appointment last week (I feel very lucky to have had it with no real symptoms of anything when people on here seem to struggle to get referred).

I have had many blood tests again, he thinks my hair loss is just my body having a fast turnover of hair (I don't, as it was never like this until last year). He has discharged me with a 12 month open appointment.

I had vitamin D tested as was deficient in December (16.3, I wasn't given a reference range), it has now gone up to 77 which I am quite pleased by.

I had ferritin tested as last September it was 20 and after a months of supplements it was 27 in the December. I have now been taking iron supplements for almost 10 months and my ferritin level was 45. I am quite shocked by this and expected it to be higher. I am actually experiencing some hair growth with my hair shedding. It is noticeable to others and I'm seriously wondering if it was the iron after all.

Endo tested me for tpo antibodies due to my family history and thinks they'll be positive and that is why last year I had a positive ANA, but he said there is nothing can be done about them even if I do have them (I havent had results yet). My TSH was 1.46, so I think I firmly believe I dont have a thyroid issue now.

My tiredness is a big issue still, but my gp and other specialists have exhausted all blood tests, what can I do.

Thanks to everyone who previously commented. Just thought I'd update and let you know I appreciate the help I've been given.

[shaws]

Was your Free T4 and Free not tested? If antibodies are present it means you have an Autoimmune Thyroid Disease - the commonest form of hypothyroidism and the antibodies attack the thyroid gland and they wax and wane.

He states that 'nothing can be done about antibodies' but members on this forum are aware that going gluten-free can reduce the antibodies and it is these that cause us to become hypo. Both links below will be informative.

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

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

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

We have to educate ourselves and in the past, due to our symptoms, we were given a trial of NDT (natural dessicated thyroid hormones). Nowadays they know no clinical symptoms and only take notice of the TSH alone.

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

[Hidden in reply to shaws]

The only things thyroid related that were tested were the antibodies , which I've had no result for yet and TSH. I was told if my TSH was normal there was no chance I had even autoimmune thyroiditis, let alone Hypo. I will wait for the results of antibodies and perhaps try gluten free for a while, I do feel tired after eating meals with bread (although not pasta). Thanks for responding

[greygoose]

My TSH was 1.46, so I think I firmly believe I dont have a thyroid issue now.

A TSH test on its own means nothing. You have to consider all the results together, as a whole. And, if you have high antibodies, levels can jump around. So, just because it was 1.46 the day of the blood draw doesn't mean it always is.

[Hidden in reply to greygoose]

I guess so. Plus my last TSH was 1.88 and that was at a later time than this was taken (although only about an hour later). I just don't know what to think then.

[greygoose in reply to Hidden]

Don't think anything until you get the antibody results. And, as everyone has said, you need FT4 and FT3 tested. Until those are done, you know absolutely nothing about your thyroid status. It is possible to be hypo with a low TSH. Which is why you cannot make any diagnosis on the TSH alone.

[Hidden in reply to greygoose]

Ok thank you. Once I get a job I will get the tests from my first pay then that will be over and done with. Plus with the endo saying he suspects I will have antibodies due to my family history, but then also stating I wouldn't have hashis with a normal TSH, it has me wondering.

That being said he was a lovely man. Considering my GP didnt even write a referral letter either, he listened to me and I did get lots of blood tests out of the way.

[greygoose in reply to Hidden]

Oh dear, these endos do say some stupid things! Having a so-called 'normal' TSH does not mean you can't have Hashi's. As I said, when you have Hashi's, levels are likely to jump around. You can go from hypo to 'hyper' (not true hyper) very quickly. Then, levels will slowly come down again. So, at some point, the TSH is bound to be in the 'normal' range - maybe for quite a while - before you go hypo again. Also, it depends at what point you are with the Hashi's. It could be that the thyroid hasn't yet been damaged in any way, in which case it would still be working 'normally' and the TSH would be 'normal'. But that doesn't mean that it will always be that way. But, if he doesn't do all the right tests, he's never going to know, is he. I just don't understand their logic.

[Hidden in reply to greygoose]

Perhaps it's all based on funding, but given how many things I was tested for finances didnt seem an issue at my most recent appointment. I've had testosterone and all sorts retested again as I also have a fair bit of peach fuzz on my face that I never had 2 years ago. I guess my only option will be to pay for private tests. I suppose I've still been very lucky to even get to see an endo on the NHS and I only waited 2 months.

Thanks again for responding as you and others have each time I've posted.

[greygoose in reply to Hidden]

I think it's more to do with ignorance than funding.

[SlowDragon Administrator]

For full Thyroid evaluation 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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

If TPO antibodies are negative You will need to get Thyroid antibodies testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative. Many Hashimoto's patients only have raised TG antibodies

20% of Hashimoto's patients never have raised antibodies at all. A thyroid ultrasound scan can be helpful

healthunlocked.com/thyroidu...

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

If you have raised Thyroid antibodies (Hashimoto's) then strictly gluten free diet often helps

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

[Hidden in reply to SlowDragon]

Is the coeliac blood test the antibodies? If so I was tested for that and its came back negative. I genuinely cant afford any private tests, I worry about putting the heating on I'm that low on income. I am on benefits and am currently looking for a job so this is not long term, but at the moment private tests are not a possibility.

I have had vitamin d and ferritin tested (I've had full blood count but only thing mentioned is that my haemoglobin is 180 and that is apparently excellent). I've had kidney functions and all sorts tested, hormones etc. I am eager to see my tpo antibody result but that has not been mentioned in the letter.

Thanks for responding

[SlowDragon Administrator in reply to Hidden]

What were the actual vitamin D and ferritin results and ranges?

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Sounds like endocrinologist tested TPO Thyroid antibodies

Come back with new post once you get results

[Hidden in reply to SlowDragon]

I will do thank you.

I've never been given range for Vitamin D, but endo did say I had quite a deficiency back in December. My GP had told me it was just an insufficiency and it wasnt until June that I was prescribed the 40,000iu a week for 7 weeks supplements.

The range for ferritin is 15-150.

I will wait for my last set of results (hormones) and then I will ring and request all my results from the past year.

[SlowDragon Administrator in reply to Hidden]

Vitamin D has standard range in UK and measured in nmol

Optimal is 80-150nmol

Sufficient 50-80

Insufficient 25-50

Deficicient under 25

You are on loading dose vitamin D, so result was deficient- under 25

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's (high thyroid antibodies) we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Hashimoto's and link to low vitamin D

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

[SlowDragon Administrator in reply to Hidden]

Sorry just seen you added results already

Vitamin D still on low side - optimal is 80-100nmol

Ferritin still low

Aiming for half way in range

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

[Hidden in reply to SlowDragon]

Would it be safe to eat liver if a pharmacist told me to avoid Vitamin A containing products? This is due to a topical retinoid I use for acne.

I do drink a lot of tea (6 cups a day) and wonder if the milk could be preventing me from absorbing iron adequately. I will definitely add vitamin C. I will add more iron rich foods. Thanks again.

[SlowDragon Administrator in reply to Hidden]

Low vitamin D may be linked to low B vitamins as explained here by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

Low folate and/or low B12 extremely common with Hashimoto's

Low B vitamins may be linked to acne

Ask GP to test folate and B12

linkedin.com/pulse/10-skin-...

B12 - too much or too little often mentioned with acne

Some Acne medication linked to hairloss

healthline.com/health/medic...

[Hidden in reply to SlowDragon]

I have actually wondered if my acne cream could have caused the hair loss. It started shortly after I started using retinoids. Could be a coincidence of course and the GP said it doesnt cross the skin barrier. Yet if thats the case why did a pharmacist tell me to avoid vitamin A containing products.

Thanks again for responding so much. The endocrinologist did recommend I take 1000iu vitamin D daily for the rest of my life.

[SlowDragon Administrator in reply to Hidden]

You may need higher maintenance dose of vitamin D than that .....it's trial and error what dose each person needs

Masses of information on google about acne medication and hairloss

[Hidden in reply to SlowDragon]

Thanks again. If it is due to my topical retinoid (isotretinoin) then I've no choice but to accept my hair loss as my acne is worse.

I currently have further noticeable hair loss at the centre front of my parting, but I also have noticeable regrowth at my temples which is where I first noticed just how bad my hair loss.

[SlowDragon Administrator in reply to Hidden]

Hashimoto's and hairloss often linked.....so first step is to see what endocrinologists tests show

Also get folate and B12 tested if not been done yet

[Hidden in reply to SlowDragon]

Ok thanks again. I will await my last lot of results which should include TPO antibodies and update.

[SlowDragon Administrator in reply to Hidden]

Just test TPO antibodies is not enough

There are two sorts, TPO and TG thyroid antibodies. Nhs refuses to test TG antibodies if TPO antibodies are negative

Acne and B12 issues can be linked

You need folate and B12 tested

Low vitamin D and ferritin levels suggest poor gut function, common when hypothyroid especially with Hashimoto's

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

[Hidden in reply to SlowDragon]

Thanks slow dragon. Guess I'll just have to wait until I have the money and pay for tests myself. Strange how the endo himself said he expects me to have antibodies given my family history and also given my positive ANA last year but my test was normal. Thanks again for taking the time to reply to me.

[SlowDragon Administrator in reply to Hidden]

We see many people on here who only have high TG antibodies .....they frequently struggle to get diagnosed

Or alternatively never have raised antibodies but when have ultrasound scan it shows they do have Hashimoto's

Trying strictly gluten free diet might be your next step

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[Hidden in reply to SlowDragon]

I had the coeliac test and it came back negative. I will try gluten free.

[Hidden]

Not good. Guess all I can do is wait until I have some money and get private testing. I don't want to keep going back to GPs and being fobbed off or getting tests that still wont reveal if I have an issue.

[Hidden]

I went to a rheumatologist last year. She said my positive ANA with no other symptoms (tiredness, hair loss and loss of libido seems to mean nothing to them) is irrelevant. Apparently healthy people can have them (my titer was 1/320, which from what ive read online isn't low and nor is it high, seems to be in the middle typically).

My hair loss is quite significant and I took a massive clump of hair to see a GP who seemed completely indifferent to it. They seem to only be bothered about bald patches, which I dont have. Although I do have signs of regrowth around my temples which makes me wonder if it was indeed low iron, or even low Vitamin D.

I will look into gluten free, I can't afford any tests at all. Once I am onto universal credit and paying off the advance loan that ive had to get for gas and electric etc, I will be at least £150 a month worse off than what I'm used to (I came from ESA). I didnt really have much spare income anyway but now I'm really going to be struggling. That being said I am looking for work so won't be skint for too long I hope.