Hi all, I'm newish here and looking for advice ... - Thyroid UK

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Hi all, I'm newish here and looking for advice re test results, Vit D, Calcium and bone loss.

Topes009 profile image
8 Replies

My history: thyroidectomy in early 90's following Hashi diagnosis, symptoms were hyper, high pulse, anxiety, weight loss, palpitations, panic attacks, this started after the loss of my daughter at 32 weeks. I was sent from the hospital with no thyroxine and no thryoid! Unsurprisingly I felt very unwell after a few weeks.

Long, long story but the main thing that repeats is that it is impossible to be heard by GPs, Endos, they all resort to that I must be depressed and should seek help for that.

A few years ago I had a bone density test which showed some osteopenia, my serum calcium level was fine however so I was not offered any calcium supplementation.

I take 150mcg Levo

my latest results are:

tsh 0.02

free T3 5.6

Ferritin 38 (20-350)

Folate 11.4 (3-18)

B12 517 (200-960)

Haemoglobin 125

Calcium (serum) 2.32 (2.2-2.6)

No Ft4 this time but that is usually around 27

My TSH always runs at that level and I have resisted many attempts by GPs and Endos to reduce my dose as I feel awful on a lower dose, this of course they don't really believe but then they probably have their thyroids intact. I raised my level to that when I was trying to conceive, I found some research that showed that TSH needed to be in the lower range to conceive, mine was not, as soon as I got it down I started to conceive, I lost a lot of babies and remain convinced that it was due to the thyroid antibodies.

Having read some posts here I am wondering if my Vitamin D levels are low, not sure about the Calcium level, it is lowish but not low, the ferritin however I see as low although the GP did not agree. I have started supplementing with a gentle iron and already have more energy, not needing to nap after work every day as I was having to do until recently. I am concerned about the bone density and as I am now starting the menopause feel this may get worse, maybe vit D would be of help. I also wonder if adding T3 would help with energy, mood, aches, brain fog, I don't have these all the time but have good days and bad days.

Thank you for taking the time to read this if you've got this far, bit of an essay!

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Topes009
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SlowDragon profile image
SlowDragonAdministrator

First step is to get vitamin D tested

Postal NHS kit

vitamindtest.org.uk

Yes your ferritin is likely too low, but because it’s within range GP won’t agree

Never supplement iron without doing full iron panel test for anaemia first

Can order one via Medichecks

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Improving low vitamin levels can improve conversion of Ft4 to Ft3

As you had Hashimoto’s are you on strictly gluten free diet or have you ever trialed it?

Frequently gluten free diet helps or is essential

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and 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

healthcheckshop.co.uk/store...?

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

Come back with new post once you get vitamin D result

bantam12 profile image
bantam12

Your calcium level is good where it is.

Jennieleelindsay profile image
Jennieleelindsay

You must take control of your health and do what it takes to make these doctors listen to you. That’s what I now do after 30 years of them not listening to me. God bless and look after yourself

I can't offer any help but I just wanted to say I'm sorry to hear of the loss of your daughter, and your subsequent losses. 💔

HLAB35 profile image
HLAB35

Absolutely get that vitamin D test done asap. Vitamin D is essential for immunity, it 'harvests' calcium from food, it also works as a 'master hormone' to help control adrenal and thyroid levels. Once you have your result, note that vitamin D requires two cofactors to work properly.

1) Magnesium converts vitamin D into the active form in the body and helps keep our bodies flexible, muscles relaxed, minds focused and not anxious, and our bones tough rather than brittle like chalk...many minerals and B12 are needed for strong bones too. Dr Myhill (check out her website) talks about all the necessary ingredients for strong bones and she sells a mineral mix for bone health. Magnesium comes in many forms, but Glycinate and Soluble Citrate are both reasonably well absorbed. The soluble citrate form can cause loose bowels if you have too much at once.

2) Vitamin K2, discovered by a dentist, is what we lack in modern diets to help us deposit the Calcium that vitamin D 'collects' and it then deposits it where it's needed - meaning - in bone rather than in organs, soft tissue or arteries.

You cannot test for cellular Magnesium or K2 levels, so it's generally a good idea to start on these regardless, ESPECIALLY if we're supplementing Vitamin D.

Hope you get the vit D test done soon, because you may need to start on a pretty high dose, but you don't want to do this blindly as overdosing on vitamin D can cause side effects in people who already have enough.

penny profile image
penny

npr.org/2009/12/21/12160981...

Topes009 profile image
Topes009

Update on the above... I had a video call with an endo yesterday who was understanding and will prescribe NDT which is great after years of asking for this or T3 and T4.

My concerns are though, that even though my FT3 is pretty ideal at 5.6 because my TSH is <0.02 he thinks I am over medicated and wants to start the dose of NDT at 30mcg with 50 mcg levo which he says equates to 100mcg levo. My question to anyone who has already tried this combination of levo and NDT is, does the lower dose of mixed feel the same as a higher dose of just levo? ( I am currently on 150 mcg Levo).

I am a single mum, work full time, (although am just about to start weird furlough hours as and when my company require, no stress there then) have no support at all and cannot afford to have even less energy than I do now. He reassured me I will feel much better and with bloods 4 weeks into the new regime he may want to tweak it up slightly. He also did not think that ferritin at 38 was anything to worry about.

I am waiting for vit d levels from a private test.

Any advice/experience would be hugely helpful.

Thank you :)

SlowDragon profile image
SlowDragonAdministrator in reply toTopes009

Some of your symptoms may come from Ft4 being too high, so I would possibly give endo “benefit of the doubt” and try his way

Meanwhile continue improving low ferritin. Did you get full iron panel test?

What about vitamin D ?

Are you on strictly gluten free diet?

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