Loosing the will to live: I was diagnosed with... - Thyroid UK

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Loosing the will to live

HocusPocus profile image
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I was diagnosed with Hashimoto's Disease in 1996. Luckily my GP screened for the antibodies as my T4 was borderline; purely because his daughter had been diagnosed with it. At the time I was passing out all the time, I had developed psoriasis, I had brain fog, depression and a host of other symptoms. They improved fractionally when I was given Levothyroxine to control high TSH levels. Long story short, I was eventually put on combination Levothyroxine and Liothyronine as my health continued to be a problem. As my health problems still persisted, my endo said that I should be overdosed to 0.1 tsh, which seemed to keep me ok (difficult to tell as I also developed a kidney infection, which needed major surgery in the meantime, plus the issues below). Last year a locum GP decided to cut my liothyronine dosage in half - I was so ill I could not work and my hair fell out in big patches; my Endo refused to see me and now claimed that it was acceptable for my tsh to be 0.5 despite my debilitating symptoms. Thankfully in Sept, a GP put me back onto my full liothyronine dose, my health has improved and my hair is mostly growing back.

Alongside all of this is a lifetime of anaemia. I nearly died at 14 years old and spent 10 days in hospital with suspected Leukaemia. Since then I have needed constant iron supplements to prevent anaemia (tablets made me ill, so I eventually used liquid iron), until 2009 when supplements made no difference whatsoever. I have since had intravenous iron infusions when my ferritin levels fall below 100ug. (That's another battle with GP's, and NHS referral systems, who insist that level is ok, despite my blood consultant saying otherwise; I have just found UK guidance which identifies those with underlying chronic conditions should be treated as deficient at 100ug ferritin, not 30ug as per the healthy population, can pass on if anyone wants it.) Last year, my ferritin count dropped drastically in 3 months without any known cause. It has only done this once before, and each time I had the classic symptoms associated with anaemia, despite having what is considered a high to normal ferritin count (way above 100ug) and regular haemoglobin. I was on my knees. Has anyone else had the same?

Little has been done to establish why I have iron deficiency. I had a coeliac test in 2009; however I wasn't told that I needed to be eating gluten in order for the test to work. I had stopped eating wheat because of its link to thyroid health and an earlier blood test had identified a wheat intolerance. I am being retested now. I began eating wheat a week ago and have had muscle pain and stiffness ever since. I have also been doing research myself, as I don't exactly trust the medical profession to come up with the answers. I have come across a condition called Autoimmune Metaplastic Atrophic Gastritis, which links chronic iron deficiency to Hashimoto's Disease. Has anyone with both Hashimoto's and chronic iron deficiency been diagnosed with this condition? If so, what treatment was advised and did it help?

My B12 readings were always 'normal' up to my kidney surgery. in 2018. I was anaemic following a renal pelvic bleed during surgery. They didn't give me a blood transfusion because of my chronic blood problems, and didn't want to do anything without my consultant, who was on leave ! My ferritin levels were high because of the inflammation following surgery anyway. 6 weeks later my ferritin levels were still way above 100ug, but my anaemia was no better. Eventually they discovered I was lacking in b12. I haven't been told that this is an issue again, though I don't know if they even check. I noticed on one post that other supplements can give false readings for B12?

Finally, my Endo suggested that I have HRT, long before the menopause, because of my poor response to my thyroid medication. I didn't notice much difference. My GP has just swapped me to a patch, at the same time liothyronine was reintroduced. My brain has gone 'Zing', back to life. I am sure I am feeling better than before, so not sure if it is the patch or the lio. I have been having bleeds on the patch, having a scan next week, so not sure if I need to stop them. I wondered if anyone else had found them really beneficial, or not?

Sorry, lots to say as I have had over 4 decades of dealing with this !

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SlowDragon profile image
SlowDragonAdministrator

Last year, my ferritin count dropped drastically in 3 months without any known cause. It has only done this once before, and each time I had the classic symptoms associated with anaemia, despite having what is considered a high to normal ferritin count (way above 100ug) and regular haemoglobin. I was on my knees. Has anyone else had the same?

Ferritin will have dropped in direct response to (idiotic) halving of your T3

SlowDragon profile image
SlowDragonAdministrator

I had stopped eating wheat because of its link to thyroid health and an earlier blood test had identified a wheat intolerance. I am being retested now. I began eating wheat a week ago and have had muscle pain and stiffness ever since. 

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

Hashimoto’s and leaky gut often occur together

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 

You would need to be on high Gluten diet at least 6 weeks before testing

Personally I don’t think it’s worth doing

You know you’re wheat (gluten?) intolerant and eating wheat/gluten likely to damage/upset your gut and vitamin levels for months

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.

Both dairy and gluten are inflammatory foods

Similarly few months later recommend consider trying dairy free too.

Approx 50-60% find dairy free beneficial

SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you taking

Many (most?) Hashimoto’s patients, especially if gluten/dairy intolerant need to supplement daily vitamin D and Vitamin B complex

Some also need separate B12 as well

Essential to test vitamin D, folate and B12 at least once year minimum

Test before starting vitamin B complex or B12

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins)

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

Or 

Igennus Vitamin B complex.

Nice small tablets. Full dose is 2 tablets per day. Most people are fine with just single tablet 

igennus.com/products/super-...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

SlowDragon profile image
SlowDragonAdministrator

I have just found UK guidance which identifies those with underlying chronic conditions should be treated as deficient at 100ug ferritin, not 30ug as per the healthy population, can pass on if anyone wants it

Yes please can you share this info on here

We have many hundreds of members who struggle to even get medics to recognise ferritin under 15 is an issue……let alone under 30!

Babycatcher profile image
Babycatcher

I have hasimoto’s thyroiditis.. and have been diagnosed with pernicious anaemia too.. I think it’s because of my absorption of food, vitamins etc.. it’s a battle and I have done as much research as I can to get answers as to why I have these conditions. Doctors don’t know.. my endocrinologist is sympathetic but says I’m a mystery! It’s hard work to try and get back to optimum health.

shaws profile image
shawsAdministrator in reply to Babycatcher

My mother had Pernicious Anaemia and was given an injections every three months.

I also have Pernicious Anaemia but I have an injection monthly and my doctor has stated I can have as many as I think I need.

My mother's GP stopped prescribing B12 injections and family thought that was 'good' but it turned out that by stopping her B12 injections she developed stomach cancer that caused her demise.

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