Good morning everyone. I just found this place and making my way through the posts.
I haven’t been well all year and finally got my diagnosis last month - hashimotos and hypothyroidism. My last TSH reading was 8.4 and I started on 50mg levo. For the first two weeks I started to improve, just slightly but noticeably. Then the third week I crashed back down and I feel worse than ever. So my question is, is this normal? I expected it to take months to have an effect but thought it would be linear improvement? Or can it be this is a blip and I’ll improve again.
I’m sure the doc won’t want to see me for another couple of months, she’ll just say to give it time.
I’m still working but it takes all my energy to get through the day (office job) and then I get home, sleep, have dinner, sleep through the night. And still exhausted! I have a really poor quality of life. I’m normally active and into fitness and I just can’t do anything.
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Loopnova
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Yes 50mcg levothyroxine is only standard starter dose
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Has GP tested vitamin D, folate, ferritin and B12 yet
Or done coeliac blood test
If not ….request these are tested at next blood test
Dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2
Most people when adequately treated will have Ft4 in top third of range, Ft3 at least 50% through range…often TSH is then around or under 1
It’s likely to take at least 2 more dose increases over coming months
You progress so far is typical….initially notice improving….then start to feel worse …shows your body is getting ready for next dose increase
Always get thyroid tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
I take it first thing in the morning. The first thing I drink after is a green tea which is about an hour or so later. Another hour after that I have breakfast which is usually scrambled eggs, made with butter and cheese. I have read some things about avoiding calcium so I wonder about cutting that out.
I was told all other levels are ok
B12 = 454
Ferritin = 146
Folate = 12
Vit d = it just says sufficient.
My free t4 shows within range at 16.4
I haven’t had a coeliac blood test
I can’t actually remember what the doc said about going back so I need to ring and check, but she gave me three months supply of meds so I thought I’d just go back a couple of weeks before I run out.
Look on the packet - possibly the long side. It will say MAH Accord and a PL number.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
The term "generic" really doesn't mean anything - especially in the UK.
The only levothyroxine that might once have been regarded as not being generic is Eltroxin. But that is absolutely identical to Advanz Mercury Pharma Levothyroxine.
Almus is Accord brand boxed by Boots Also available as Northstar via Lloyds
Or as Accord in other pharmacies
Accord does NOT make 25mcg tablets
So when you need next dose increase to 75mcg, in order to stay on same brand, get GP to prescribe higher number of 50mcg tablets and cut in half to get 25mcg
Vitamin D, you need actual results
Are you currently taking any vitamin D supplements
Aiming for at least around 80nmol and around 100nmol maybe better
You need range on Folate….top of range is typically either 20 or 60
Looking for folate at least half way through range
B12 at least over 500
Ferritin…again need range. Typically it’s 12-150 for women
Only make one change at a time, otherwise you can’t see what’s helping
Ask for coeliac test or test yourself before trialing strictly gluten free
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 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
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.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Hang in there. I know what you are going through. The fatigue can be overwhelming. Be patient and the medication will help you. It takes time to get adjusted.
Yes. Perfectly normal. And likely to happen each time you have an increase in dose until you get to the optimal dose for you. It's the body acknowledging that it appreciates the increase in FT4 level, but it still isn't enough - i.e. you're ready for an increase in dose.
Even so, it's best to wait the full 6-8 weeks - weeks, not months! - for a retest, to give levels time to settle. Then insist on an increase in dose, if you feel it's necessary - which it obviously is, according to your symptoms.
Doctors don't know anything about this sort of thing. They're just like accountants, they only look at the figures. If the figures are 'good' - i.e somewhere within the range - they consider that you should be, too. So, we often have to fight for the increases we need. Just a sad fact of hypthyroid life.
Thanks. I rang the surgery to make an appointment but couldn’t get much past the receptionist who said I have to wait three months. Which I’ll have ran out of meds by then anyway. I know my doc was pretty strict about 3 months between blood tests before now but I’m thinking about making an appointment with her anyway at about the 8 week mark and see if she’ll review my meds based on symptoms rather than bloods.
Well, three months is always too long, even without a test tube shortage! Shouldn't be more than 8 weeks. So, as they will be unable to do the testing now, maybe you can persuade her to do it the old-fashioned way and dose by symptoms. Who knows, this might be a blessing in disguise!
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