I need some help

[Goodytwoshoes]

I was diagnosed with an underactive thyroid about 6 or 7 years ago (amongst other things) I have struggled with everything the last few years particularly with having vitamin D deficiency, thus year despite tsking 10,000 ius a day I have not increased the vitamin D - it has gone down from 33nmols Dec 2nd to 30 nmols Jan 24th. I requested my medical records from the local hospital (over domething else) and received some Monday, having read through all ths blood test results, I was thyroid peroxidase antibody positive in 2019 (neg in 2018 & 2017) and I have never been told. I have had problems swallowing for a year or two and have had Barium swallow, CT - failed gastroscopy (horrendous) and following "swollen glands" for some time had a Ultra sound scan on my neck. Thyroid is full of cysts and mentioned "chronic thyroiditis", which I googled and it came up with hashimotos. Again never mentioned, and still jever mentioned when the scan was halfheartedly discussed and dismissed. And thst is exactly how I feel I have been treated - dismissively, I have osteoporosis, and was told over 2 years ago that I would benefit from treatment, but have not had any (low vit D being the excuse) . I am 67 years old, feel exhausted, 10 years ago I had major bowel surgery that went horribly wrong and keep getting sepsis from a recurring abscess in the pelvic cavity. Hospital appointments are cancelled, and I can never find any information out. I complained to PALS more than 10 days ago by e-mail as they weren't answering the phone and have had no response. I am more than fed up and feel these "medical professionals" taking over from practice GPs have neither patience nor any empathy. They well and truly make you feel a nuisance.Any advice welcome

[SlowDragon Administrator]

Do you have any recent thyroid results and ranges

Please add and say how long ago these were done

First step is to get FULL thyroid and vitamin testing done

Ideally via GP

Request TSH, Ft4 and Ft3 tested plus folate, ferritin and B12

Plus coeliac blood test too

ALWAYS Test thyroid levels early morning, around 9am and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

[SlowDragon Administrator]

vitamin D

Exactly what vitamin D are you currently taking

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Are you currently taking any magnesium or vitamin K2

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Goodytwoshoes in reply to SlowDragon]

Vit D range <30 deficient 30 - 50 insufficient - results:Vit D 33nmol/L Dec 2nd 2022Vit D 30nmol/L Jan 24th 2023 - 20,000 iu's on prescription - 3 a week for 5 weeks then 10,000 ius I have taken over the counter until I received the results. Prior to Dec 2nd I had 20,000 ius a week prescribed as a single dose for 15 weeks as vit D was 23 nmols in Sept and only raised 10 in the 15 weeks. Also taking 500mcg of K2 MK 7, but I also have 1000mcg K2 MK4 (conflicting advice on 2 facebook groups!) Magnesium malate 1000mg daily (but this equates to only 133mg of magnesium, so I have purchased magnesium citrate which is a higher dose) even with supplements magnesium was only 0.66 (range 0.7 to 1."something" results from last week)

PTH 9.5 range (1.3 to 7.3 last week)

TSH 3.16mu/L (range 0.27 - 4.2) prescribed 25 levo but take 50 as there's 56 on the monthly prescription)

Rheumatology were writing to my GP to ask him to prescribe 10 000ius daily of vitamin D. I might add that I have been prescribed adcal and was taking 1 a day. You think consultants would know though that there were adverse effects for adcal. I'm very teary currently, I feel so let down, and I am so forgetful, my neck and shoulders hurt and I just don't know what the hell is going on with my body.

[Goodytwoshoes in reply to Goodytwoshoes]

TSH result was Dec 2nd 2022

[SlowDragon Administrator in reply to Goodytwoshoes]

Well you’re extremely under medicated for thyroid

Standard STARTER dose is 50mcg and dose is increased slowly upwards in 25mcg steps (retesting blood 6-8 weeks after each dose increase) …..until TSH is around or under 1 and all hypothyroid symptoms resolved

ESSENTIAL to always test Ft4 and Ft3

Aiming for Ft3 (active hormone) at least 50-60% through range. Usually Ft4 (levothyroxine) at least similar, but often needs to be higher

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

For good conversion of Ft4 to Ft3 we need good vitamin levels

And for good vitamin levels we need good Ft3

Guidelines on eventual dose levothyroxine likely to need is approximately 1.6mcg per kilo per day

Levothyroxine doesn’t “top up” failing thyroid, it replaces it. Unless extremely petite likely to need to be on AT LEAST 100mcg levothyroxine per day

Approximately how much do you weigh in kilo

How long have you been left on just 25mcg levothyroxine

Explain you have been taking 50mcg for xx Mon

Request 25mcg increase in dose up to 75mcg and book 9am blood test for 6-8 weeks time

Meanwhile get folate, ferritin and B12 levels tested

And try mouth spray vitamin D

[SlowDragon Administrator]

With Hashimoto’s it’s especially important to be on high enough dose levothyroxine to stop levels changing up and down

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels 

Low vitamin levels affect Thyroid hormone working 

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common. 

 A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies 

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...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Both dairy and gluten are inflammatory foods

[Goodytwoshoes in reply to SlowDragon]

I have had a few coeliac tests done which were all negative, one of the things I have read about skin wheals - I have been taking antihistamine for 10 years as my skin comes up in wheals constantly - especially when tourneqets are used for blood tests and marks are all the way from above the elbow to the wrists, just from being "handled" and they are hot to the touch - originally thought to be an allergic reaction. I might add - although it is under control - I have psoriasis, also duagnosed with ulcerative colitis but large intestine removed and I only have 2 meters of small intestine, have problems swallowing, and have a narrowing in the stomach outlet (still undergoing tests) query whether I have Crohn's disease - your query about weight and thyroxine dose - I am a little over 90kg, don't have a big appetite, I was first prescribed thyroxine 29th Nov 2016 and it has never been increased. I was prescribed it before the Christmas and was given 2 months supply of 25mg - hence the 56 tablets. was a size 8 at age 40 but weight doubled after steroids. And I am very forgetful, and forever bursting into tears

[McPammy]

Have you considered going private only. I did this after many failed attempts with the NHS. Initially I was a bit worried about the potential costs but it wasn’t that expensive and I was diagnosed within 2 consultations. I got all my bloods done through the NHS which kept those costs down. All you need to do is chose a private only endocrinologist then request a letter of referral from your GP who will send it to them. Then book a consultation. The private only endocrinologist I see does zoom and telephone consultations as well as face to face if you live far away from his Oxford practice. He is very much respected within the NHS and is on the Thyroid UK endocrinologist list. If you need his name just message me as I can’t mention names on here. Sometimes you just need proper help from someone who will give you their expertise and time and more importantly put you on the road to recovery and get your life back. The first words this Endocrinologist said to me was ‘I’m here to make you well’ and he did very quickly.