Hi, thanks for reading and for any advice! My first test results in March were TSH 15.1, free T4 9.6 and antibodies 377. I was put on 25mg levo. After a month TSH was 6.2 and T4 13. I was told I was fine as I was. I disagreed as I was still sleeping at least 12 hours a night, and many other unpleasant symptoms. So they go agreed to let me go up to 50mg every other day. This didn't seem to make a difference so after 5 weeks I asked for 50mg a day. That was 5 weeks ago. If anything I feel worse. I'm sleeping way too much, I can't tolerate alcohol anymore without crippling depression the next day (nice to have been given motivation to stop though!) And weight gain I can't stop or get rid of. I have given up gluten and dairy for past two months, and am taking vit d prescribed by go as was deficient, and k2.
I did a private blood test this week and results are a bit confusing. TSH 4.67, free T4 14.8, free T3 4.2, thyroid peroxidase antibodies 577, anti thyroglobulin antibodies 719.
Do I need more levothyroxine? Is it reasonable to ask to be put up to 75mg? I must say I feel quite a long way from normal, and if it wasn't for working from home I wonder how I'd manage. I used to be very active but that seems like a past life now.
Also I've discovered I can get a referral to a private endocrinologist through my work healthcare insurance. Should I be trying to source the right one rather than let the scheme point me to one that they already work with? Any advice very welcome.
Thank you!
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Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on 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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Make an appointment to see GP and get dose increase
We recommend taking along a supportive friend or family member to consultation. Just as a witness they don’t need to say anything
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
Your high antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Low vitamin levels are extremely common, as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. 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
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
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).
Come back with new post once you get vitamin results and let us know how you get on at GP’s
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists in case you need it
The aim of a treated hypo patient n Levo, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Normal protocol is to start on 50mcg Levo unless a child, elderly or have a heart condition. Retest after 6 weeks, increase dose by 25mcg. Retest again 6-8 weeks after the increase. Repeat until levels are where they need to be for you to feel well.
Your doctor doesn't seem to have a clue about treating hypothyroidism or initiation and titration of Levo.
which gives dosing information from the British National Formulary and NICE.
Also, your raised antibodies suggest autoimmune thyroid disease aka Hashimoto's which is where the immune system attacks the thyroid and gradually destroys it. Most doctors dismiss antibodies as being of no importance; however, antibodies fluctuate and symptoms a test results can also fluctuate.
Some members have found that a gluten free diet can help. But there is no guarantee.
Hashimoto's tends to lead to gut/absorption problems and very often there are low nutrient levels or deficiencies. It's essential to test
Vit D
B12
Folate
Ferritin
If not already done then ask GP to test these and post results with reference ranges (plus unit's of measurement for Vit D and B12) for members to comment.
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
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.
Thanks for all the advice, waiting for call from my gp today. My vitamin d was 30 nmol/L. I was prescribed 20,000 unit capsules, 1 a day for ten days, then 1 a week for ten weeks. I was also tested for b12 but that came back normal at 392 Ng/L.
Your b12 is still too low should be over 550 to prevent nerve damage. I would also suggest you test your adrenals. I've had a pretty tough year. At first the levo made me feel good but 18months later all the improvement has disappeared. My adrenals have flopped and my dhea halved due to the stress of the levo so it pays to make sure your cortisol can live up to the rise in metabolism. I have lost what energy I had and I have put on a stone in weight.
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