So .... I posted on here after my last set of test results which showed high TSH and high TPO antibodies ... after speaking with my doctor, who referred me to a rheumatologist, endocrinologist and for an ultrasound scan of my thyroid, she then said she couldn’t prescribe me anything as my test was done slightly earlier than it should have been.
Result was I have had to wait another 8 weeks barely able to walk with intense joint and muscle pain, fatigue, stomach issues, dry and very itchy skin and so on ....
8 weeks to the day I’ve had my bloods done again yesterday and they reported yesterday evening as .....
TSH 13.1 range should be within 0.3 - 5.6
Free FT4. 5.2. Range 6.3-14
TPO antibodies. 1159.8 range 0-35
I’ve managed to get a doctors phone appointment this afternoon ... I feel that I should expect a prescription for Levothyroxine today. Obviously I’m very new to this and I was hoping for any advice so I’m not just brushed aside. I have a telephone appointment with the endocrinologist booked for 30/11/20 so I just don’t want to be told to wait as I feel so rough.
Thanks for your help
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Joanne1633
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Yes, absolutely you should be started on levothyroxine ASAP
Standard starter dose of levothyroxine is 50mcg.
GP may start you at higher dose of 75mcg or 100mcg
Definitely not a lower dose
Essential to test vitamin D, folate, ferritin and B12 too
Plus request coeliac blood test as well
Thyroid levels should be retested 6-8 weeks after each dose increase or brand change in levothyroxine
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
Teva, Aristo and Glenmark are the only lactose free tablets
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
Thank you, I’ve got to be honest I was really surprised that she didn’t retest vitamin levels and I will make sure I get a blood test form sorted today for that. I’ve got to be honest I felt very let down last time as I was convinced that she’d at least get me started on Levothyroxine. I’m a little anxious as my normal GP has retired over lockdown and this is a new GP that I’ve only had a telephone conversation with.
Keep good notes yourself on how you feel on each dose and try to work out which brand of levothyroxine suits you best. Perhaps avoid Teva brand, unless you know you are lactose intolerant. Some people love Teva, many people can’t tolerate it
Levothyroxine isn’t a quick fix. It will take at least a week to notice any improvements. Full 6-8 weeks for each dose to have full effect, hence retesting after 6-8 weeks
What gut issues are you having?
Acid reflux is common hypothyroid symptom due to low stomach acid. Should improve as you get on levothyroxine.
Vitamin 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.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Hashimoto's 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
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.
So I have an endocrinology telephone appointment for 30th November (end of month) and I’m still waiting for a response regarding my scan. My gut issues are recently getting heartburn (which I haven’t had since being heavily pregnant with my children, youngest is now nearly 10.) it’s not something that I’ve ever suffered with unless pregnant. I also have for a while now suffered with IBS and also I am a little constipated. I’m trying my best to keep walking each day as I have an energetic dog so I’m managing between 2.5 and 5 miles a day but the whole time I’m in agony with such awful pain in my legs. It’s my toes, knees, ankles joints and muscles.
Ah thank you so much you’ve been a great help... I’m going to sit down later and go through these links thoroughly. Really appreciate this thanks. I’ll update later once I’ve had my phone call with the GP... wish me luck 🤞🏻
If you are in England, once you get a prescription for levo, you are entitled to FREE prescriptions (for everything, not just the levo).
You need to see your GP and ask them to complete a FP92A application form. I renewed mine earlier this year (in the pandemic) and it came back quite quickly.
I hope you get the meds you very clearly need - but remember it may take a while to get to the right dose, so frequent (early morning) blood testing is important x
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