I had a bad experience six years ago when I was diagnosed with Hypothyroidism.
My Dr put me on an initial dose of 100 mcg which proved to be much too high and although I tried various other doses and T3 for a while, in the end I decided I felt better without medication. The endocrinologist I was under then agreed with this.
After four years on nothing (feeling generally OK ) a new Dr persuaded me to try again. I started on 25mcg Levothyroxine, increasing to 50 then 75 mcg over the last nine months. This included weeks feeling fine and then unexplained days feeling awful.
I have just had another blood test. My practice only test TSH and T4 which were 3.61 and 16 respectively. I am still not feeling good and wondered if anyone who knows much more about this than me (or indeed my Dr) would recommend that I increase my dose to 100 mcg? Also, because I seem to be sensitive to the pills, would it work to take half at night and the other half in the morning?
My symptoms are indigestion, diarrhoea, foggy head, very tired, palpitations, dizziness and anxiety - the latter mostly over how to feel better!
Any advice would be most welcome.
Many thanks.
LizT10
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LizT10
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Please add ranges (figures in brackets after each result) as each lab is different
Yes TSH is too high suggests you need dose increase in levothyroxine
Do you always get same brand of levothyroxine?
Which brand
Many people find different brands are not interchangeable
Unless very petite most people will need at least 100mcg levothyroxine per day
You can increase slowly, by taking 100mcg and 75mcg on alternate days initially
Or yes, you can split dose - 50mcg waking and 50mcg at bedtime
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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 at least annually
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 and thyroid antibodies if not been tested
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you so much for your reply with all the really helpful links. I think it is now time to pay for a full blood test so that I can see all the other relevant things to give me the full picture including antibodies, vitamins etc. I have been tested and am not coeliac but will take your advice and go gluten free to see if that helps. I am not petite - 5 ft 6in and 67 kilos which is probably around average so think I should probably increase dose to 100 mcg and try half at night and half in the early morning. I had taken my dose before the recent blood test which I realise now was a mistake!
Very many thanks indeed. Fingers crossed I can sort this out once and for all....
You might find, even if you initially start on higher dose by taking it as two smaller doses am and pm....once you get settled on higher dose you likely be able to then take as single dose after few months
I personally found gluten free diet significantly reduced underlying anxiety (negative for coeliac)
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
IBS and gut issues common
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s 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
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
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.
Has your doctor ever tested your thyroid antibodies (TPOAb & TGAb) as it sounds as if you have Hashimotos?
This is an autoimmune disease responsible for most hypothyroidism and causes fluctuating hormones as the thyroid gland is attacked, eventually becoming depleted. Attacks can happen over months or many years, and during the attacks one would suffer the symptoms you describe above.
I was tested for Hashimotos six years ago and the consultant confirmed the diagnosis. The test to discover if I was coeliac came back negative. I guess if these attacks happen intermittently, that would explain the fact that I can feel fine for several weeks and then have an attack :(. Thank you so much for your input. It is really helpful.
You haven't supplied ranges (numbers in brackets) so I can't be sure but your TSH looks too high and FT4 levels too low. That would indicate you are under medicated.
Unless you are optimally medicated with Levothyroxine, the thyroid gland will continue to struggle trying to achieve euthyroid status and it is this activity that instigates further Hashi attacks. Also messing about with your dose will encourage further activity and so attacks.
If you feel intolerant of Levothyroxine look at your nutrient & iron levels. Thyroid meds require optimal to work or can induce symptoms similar to a Hashi attacks such as anxiety, palpatations, etc.
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