You have been very helpful to me before so I just would like to see if anybody had any advice re: my current prescription and symptoms.
When I started Levo back in July last year I was started on 50 with my TSH being at around 18 and told I had subclinical hypothyroidism. 8 weeks later I was tested and my TSH was 3, so my dose was kept at 50 because I was “in range” and to be fair I had had a decrease in symptoms, still got them sometimes but not as intense.
Anyway, fast forward to now and I’m starting to feel more tired again, sometimes muscle aches and pains again, sometimes my anxiety just goes through the roof, sometimes I feel so tired and breathless, tight chest (although I did have covid in January and symptoms also cross over with anxiety). From what I’ve read, I am probably on too little medication but also from what I’ve read - GP is reluctant to increase dose if in “normal range”.
I also tested positive for antibodies although I don’t know much more about that because the doctor hasn’t actually said anything about it, I just read it on my online notes. My question is, what is the next step forward and what should I do/not do in regards to next test? I am not due a blood test for a few months but I feel I should tell them to bring it forward. I was taking B12 and a phytobiotic for stomach but have stopped 2 days ago.
Any advice would be welcome. Many thanks.
Written by
jm2450
To view profiles and participate in discussions please or .
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too.
GP should have tested for coeliac at diagnosis of autoimmune thyroid disease. If they haven’t…..Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Thanks Dragon. I might just go get full private testing including vitamins and take my results to GP as they are very reluctant to test anything and just won’t act on it. My iron was slightly low last time but they still aren’t concerned. Am I able to do that? Take my private test results to a GP and get treatment adjustments from that? Also, before getting next bloods, do I need to have been off my B12 and phytobiotic for two weeks at least? Many thanks.
my TSH being at around 18 and told I had subclinical hypothyroidism.
That's utter rubbish. A TSH of 18 is overt hypothyroidism. Subclinical is when TSH is between top of reference range but below 10.
As SlowDragon has explained, TSH when on thyroid hormone replacement should always be below 2, and it's OK to increase dose of Levo if you still have symptoms at that level, see (and point out to your GP):
1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
Hi Suzie, thanks for the response. I think their reasoning for the “subclinical label” was that my other results were “normal” or “in range” so my TSH being the only thing elevated I think that’s what their guidelines would call it. I agree though, I didn’t know much when this was first diagnosed and they have literally barely bothered with me again. When I got my initial retest, my TSH was down to 3, so that was that, nothing further. But I am now ready to push hard because I’m still not right.
Not had celiac test done yet, it’s next on my list but will have to be private as GP not interested. Can you recommend anywhere for private celiac testing?
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 a further 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If GP remains obtuse and unhelpful…..see different GP
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
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.
Only make one change at a time
Suggest you change brand levothyroxine first
Get new prescription for 50mcg tablets and trial Accord
Accord also boxed as Almus via Boots or Northstar via Lloyds
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newbie looking for advice
Newly diagnosed. Looking for advice/suggestions 
Looking for advice! 
Looking for advice
Looking for Advice on results and bad doctors. 
