How will I know when I feel well as opposed to ... - Thyroid UK

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How will I know when I feel well as opposed to just better?

Emmastace profile image

I am still trying to get to the correct dose of Levothyroxine and know that around the time I am due my next blood tests I feel awful but I have felt awful for so many years I can't remember what feeling well is like. So how do I recognise it ?

10 Replies
SlowDragon profile image

Looking at previous

Recently had dose increased to 75mcg

Bloods should be retested 6-8 weeks after each dose increase

Likely to need several further increases

Which brand of levothyroxine are you currently taking

Also important to regularly test vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

Do you have high thyroid antibodies?

If yes, you need coeliac blood test BEFORE considering trial on strictly gluten free diet for 3-6 months minimum

Emmastace profile image
Emmastace in reply to SlowDragon

I am now on 100mcg and due for next blood tests at the end of April. I am not aware that they have ever tested for vitamin D, folate, ferritin and B12, I can't see them on results anyway. I don't take supplements and have no idea about antibody levels. I think the GP mentioned antibodies in the first conversation where he told me I had Hashimoto's and he just said something along the lines that antibodies would suggest I had had the disorder for many many years. I have other medical problems (stent 6 years ago, type 2 diabetes for 5 years, potential fatty liver ). Since 1st Feb this year I have been trying to avoid carbs in general and stop white bread altogether. Stopping white bread has been life changing due to no more crippling gastric pain. In general my sleep has improved, mood is lifted and feel more energised so really notice the crash around the time I need meds adjusting. I am trying to work out how I will know when the Thyroxine is right.

SlowDragon profile image
SlowDragonAdministrator in reply to Emmastace

If he said you have Hashimoto’s...then you have high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

Low vitamin levels are especially common with Hashimoto’s

Request vitamin D, folate, ferritin and B12 tested at next blood test

Approx 86% of Hashimoto’s patients find it beneficial to be absolutely strictly gluten free

Ideally you would get coeliac blood test done while still on high gluten diet

Hashimoto's frequently 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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

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

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

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

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.

SlowDragon profile image
SlowDragonAdministrator in reply to Emmastace

You can test vitamin D via NHS postal service

Test twice year when supplementing

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better 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.

Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

SlowDragon profile image
SlowDragonAdministrator in reply to Emmastace

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Emmastace profile image
Emmastace in reply to SlowDragon

Currently taking MercuryPharma 100mcg but I have had different makes eg when I was on 75mg it was made up of a 50mcg tablet from Mercury and a 25mcg tablet from somewhere else. I have made a list of tests I will ask the GP to do on the next round of bloods thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Emmastace

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets and often most easily available and easily tolerated

Teva brand upsets many people.

Hi Emmastace I think I understand your question because I’ve been thinking the same. How will I know I feel better after feeling so rubbish for so long? How will I recognise it? I’m also on a 100 mg now and waiting 2 weeks for next GP appointment. If it’s of any use I have now had 5 days this month where I felt ‘well’. No symptoms. Managed whole days without crashing and slept well. I think I’m now aiming to feel like that the majority of the time (more than 5 days in a month anyway). It gave me a glimpse of what I might be able to achieve. I’m going to do my bloods privately to get the full range because I can post these here and get advice. GP has said doesn’t want to give me another blood test (I think she thinks I’m wasting resources) but it’s fine because I can get my own. Hope you feel better soon. X

I felt rubbish for years even though prescribed Levothyroxine and diagnosed with Hashimotos. It was a couple of years ago when I got really bad that I found out I wasn’t converting Levothyroxine T4 medications very well to the most important active T3 hormone. I did the DIO2 gene test through Regenerus Laboratories which is promoted on this site. It came back positive! Which meant I was converting very poorly. Previous blood tests also confirmed I was only converting 8% of Levothyroxine T4 to T3. T3 is the hormone we all require to function normally. I also went private and was confirmed as a poor converter and trialled on T3 Liothyronine along with Levothyroxine. Oh my god what a huge difference adding T3 Liothyronine has made to my life. I feel 20 years younger and feel fitter and happier than I have done in many many years. Plus I’ve lost over 4st. It could be that you’re not converting well. Also ensure your vitamins are all optimal B12, ferritin, D and folate. Diet can help all these as well as supplements but best to get them checked before you start supplementing, so you know where you’re at.

How will you know? Well for me it was seeing a huge cobweb in the corner and doing something about it instead of ignoring it!

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