I was diagnose with an underactive thyroid last July and since then the doctor has been gradually increasing my dosage as the medication didn't seem to be making much of an impact. I'm now at 150mg a day with folic acid but iv never felt worse, I'm exhausted to the point I'm falling asleep, a lot of swelling around my face and neck with pain and swelling under my right arm, my mood is really now, my memory is terrible and when i ask the doctor about my levels i get told its still low, try this and come back in 8 weeks. Its like going round in circles.
Has anyone experienced feeling worse with a higher dosage?
I live in the UK, went to get my bloods done again this morning, brand of levo is TEVA uk, i have been taking them from i was diagnosed.
I managed to get a copy of my bloods from a very reluctant receptionist.
T4 = 8.4pmol/L (12-22)
TSH = 70.91mIU/L (0.27-3.6)
B12 = 325ng/L (197-771)
Folate = 19.1ug/L ( >3.9)
Iron = 17umol/L (6-35)
Ferritin = 44 ug/L
these results are from when i was on 100mcg, tested on 09/12/2020
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jammygirl18
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How do you take your levo? Do you take it on an empty stomach, with a large glass of water, and then nothing to eat or drink for at least an hour after? Do you take any other medication/supplements at the same time as your levo? Because, there, you don't seem to be absorbing it at all. Although, we do need a range for that FT4 test. Ranges vary from lab to lab, so a result without a range is meaningless.
Well, you really aren't absorbing it, are you. Your FT4 is well under-range. I would think you need further investigation into your gut: why aren't you absorbing it.
When we give results of our blood tests we also have to state the 'ranges'. Ranges are in brackets after the results and due to labs using different machines, the ranges might also be different and knowing the ranges members can then respond.
Are the numbers you state from a recent blood test, or are they the original results for your first thyroid hormone test?
If you are able to add the ranges, click on the down arrow next to More and select edit and then add or change whatever you want.
I will state that your TSH is too high was very high at +70.
This is the method we recommend when having a blood test for thyroid hormones.
It has to be at the earliest possible, even if booking a test is done weeks before and allow a 24 hour gap between last dose of levo and the test and take afterwards.
The reason being that the TSH is highest early a.m. and drops throughout the day. It could mean the difference between increasing/lowering dose.
Request B12, Vit D, iron, ferritin and folate at the next test.
To edit anything in your post, click on the down arrow next to more and select edit.
The aim is gradual increases until TSH is 1 or lower.
Always get a print-out of your results, with the ranges, for your own records and most if you have a query.
The aim is that we feel well with no clinical symptoms. It can be slow and stead but as long as you're beginning to feel better.
these blood tests are from Dec 2020, i was diagnosed in July last year and have had multiple bloods done since July, i posted these as this is when my dosage increased to 150mcg and i started to feel extremely tired, forgetful and swelling has increased substantially.
You need referral to a thyroid specialist endocrinologist
Likely to need to try liquid levothyroxine and/or liothyronine
The aim of levothyroxine is to increase the dose slowly upwards until TSH is under 2
Roughly how much do you weigh
Do you have any gut issues, (bloating, acid reflux etc) do you suspect lactose intolerance or gluten intolerance?
Have you had thyroid antibodies tested
Vast majority of primary hypothyroidism is caused by autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
Gluten intolerance and lactose intolerance are common problems
Lactose intolerance often means patients need high dose levothyroxine if not on lactose free diet
Essential to get vitamins optimal
You need vitamin D tested
B12 is low, but probably not low enough for GP to treat
Dose of levothyroxine is usually only increased in 25mcg steps
Bloods should be retested 6-8 weeks after your increase to 150mcg
All blood testing should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
i suspect gluten intolerance, im now just over 19 stone, i have put on 5 stone in the past 2 1/2 years, im very swollen in my legs, arms, hands and face and it seems to be getting worse, when i come home from work i just fall asleep
Guidelines on dose by weight is approximately 1.6mcg per kilo of your weight
So you will likely need further increase
Teva brand upsets many people, so you might want to consider trying different brand. Mercury Pharma brand has 100mcg, 50mcg and 25mcg tablets
Has GP done coeliac blood test?
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
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.
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Doctors just don't understand the tiredness!
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Struggling with hypothyroidism!
