Hi all, my first post. I've had symptoms of hypothyroidism for several (6-7) years including extreme fatigue, weight gain (now 2 stone heavier), depression, achy muscles - I used to be so fit and healthy and now everything feels like a huge effort. Had several tests over the years for TSH and T4 and all were in the normal range - but only just.
Last November 2022 I was tested again and results were:
At this point, I asked the GP if I could trial some levothyroxine so I was eventually put on 25 mg. I had a little burst of energy and feeling like my 'old self' but it didn't last long.
Recent tests are (June 2023)
T4 level 13
TSH 4.58
...so back within the 'normal' range and according to the doctor, no further action needed.
I asked for my antibodies to be tested (my Mum had Hashimotos) and the results (July 2023):
se thyroid peroxidase Ab conc >1300 (ref range <60ml)
Doctor explained that I have Hashimoto's and *may* go on to develop a thyroid condition. I asked if I should stop taking the 25 mg then (!) and she said no, as I'm still in the 'normal' range with the 25mg.
I'm still having the full range of symptoms and I'm feeling at a bit of a loss, frustrated and tired with 'fighting'. I also trialled HRT for 6 months last year (in case my symptoms were peri-menopause related as I'm now 44 years old) but it made no difference to my symptoms so I stopped taking it. I am amazed at how easily I was able to access HRT but how challenging the thyroid diagnosis is. Am I missing something else, other investigations needed? Does anyone have any advice about what I can do next if I still have symptoms?
Thanks in advance for reading and for any help
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Thyroid16
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See a different doctor - this one is utterly clueless
On levothyroxine TSH should always be below 2
Most people when adequately treated will have TSH around or under 1
Bloods should be retested 6-8 weeks after each dose increase
ALWAYS test thyroid levels early morning, ideally just before 9am, only drink water between waking and test ….last dose levothyroxine 24 hours before test
Unless extremely petite likely to eventually be on at least 100mcg per day
Guidelines suggest eventual dose likely to be Approx 1.6mcg per kilo of your weight per day
Standard STARTER dose levothyroxine is 50mcg
Get dose increase to 50mcg immediately
Which brand levothyroxine are you currently taking
High thyroid antibodies confirms Hashimoto’s
You need vitamin D, folate, ferritin and B12 levels tested now
Also coeliac blood test …if not already on strictly gluten free diet
I have just started taking 50mg and booked an appointment with the GP or next week. Unfortunately I have tried a few doctors there and they all seem equally clueless about thyroid health so I'm determined to go in there 'armed' with facts and information next week.
I think the main problem is that they don't actually believe I have an underactive thyroid, despite several years of symptoms of bloods tests showing a 'flagging' thyroid (TSH above 4 and T4 around 11 or 12) only just within 'normal' ranges - this is why I believe my levo has been prescribed at such a low dose (25 mg). I'm hoping the antibody test which I requested will change this as I have Hashimoto's. My ferritin is always low (around 22) despite supplementation but I have just increased ferrous fumerate to two tablets (I'm vegetarian).
Obviously if only had this one difficult to know if other brands might suit you better
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (especially if lactose intolerant), Teva is by far the best option
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Vitamin levels
Obviously it’s extremely difficult to maintain good iron/ferritin on vegetarian diet, especially with Hashimoto’s
Low ferritin will also cause extreme fatigue
What are B12, folate and vitamin D results
Presumably you are taking daily B12 ……and daily vitamin B complex
Even if we frequently start on only 50mcg, 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.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Comprehensive list of references for needing LOW TSH on levothyroxine
These links are so useful, thank you. Is there anywhere in NICE guidelines that states that TSH should be below 2 for optimal thyroid health? I know the answer next week will be 'well your TSH is now within normal range etc'. Ps I am also going to try again get a referral to an endocrinologist as I don't appear to be getting anywhere.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Only make one change at a time
Most important one at moment get dose levothyroxine increased to 50mcg daily ……ideally stay on same brand levothyroxine while you change dose
Meanwhile get vitamins and coeliac blood tests done
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.
A trial of strictly gluten free diet is always worth doing
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
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
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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
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