Hi all! first time posting here, and just looking to get some opinions on a few things and compare some experiences
After years of not feeling right and months of being convinced of what I had, I was finally diagnosed with hypothyroidism just a few weeks ago (male aged 21, not exactly the common demographic!) with bloods showing a free t4 of 7.7 pmol/l and a tsh of 98.3 mu/l (to quote my gp, "WOW, you are very hypothyroid!")
As I'm sure is the case with a lot of you, the diagnosis helped put a lot of things in my life in to context and connected a lot of dots, but whilst the relief of diagnosis and justification for feeling so awful is nice, I still have a few concerns
The most prevalent concern is in relation to my medication - I've been put on 25mg of levo and I worry that is is too low a starting dose, as from what I understand the normal starting dose is 50. I've only been on it for a week so it's too early to tell any real difference yet, and I know that if my bloods come back as inadequate in 5 weeks' time they'll up the dose, but I feel as if this overcaution is just wasting time that could be spent getting better. So I was wondering, do you think it would be worth me asking for an increase in dosage, or would I just be turned away as I've only just started treatment?
Also, as I was only tested for free t4 and tsh, and as my t4 was only slightly out of range yet my tsh was so high, I was wondering if there might be a problem with t3 conversion; could this be the case? Or is there not much of a correlation with tsh and t4? I know that tsh is not a perfect representation of thyroid health.
And lastly I just wanted to talk about a recurring symptom I've been having; my most prominent symptom has been moderate to severe brain fog; my thoughts become extremely slow, I find it hard to reply to people sometimes (troublesome as I work in retail) my concentration is trashed and my short term memory is shot to pieces. But every now and then, these symptoms will culminate in what I can only describe as a mental shut down; I can feel it happening slowly over a few hours, then suddenly all at once. My mood will drop through the floor, I struggle to understand anything or anyone, my coordination is gone, I lose all interest in everything, it almost feels like my personality has drained away. This usually occurs whilst at work (luckily I have a very understanding and kind manager and my best friend as assistant manager) and usually towards the end of the day, and will slowly trickle away once I have left and can be alone, but it has happened whilst out with friends too. Has anybody experienced anything to this degree?
Eager to hear from you all, sorry this was so long I'm just so thankful to have a place to talk about this with people who can empathise!
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Warriorduck
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More senior members will no doubt chime in here, but I will wade in and just say - yes, your starter dosage could have been 50 mcg not 25. Dosages are started low and slowly upped as per a protocol so I would stick with it. Yes, brain fog is veeeeery common. Has your GP tested these nutrients yet: folate,ferritin, Vit D, and B12. They provide an essential part of the bigger picture with our thyroid. They are often deficient for us as we are inclined to have malabsorption problems and gut issues. When they are low it affects the conversion of our dosage, so these results throw a lot of light on ongoing issues we may have. It will be asked here: have you gone GF yet? Gluten can elevate antibodies and many people adapt the diet as a way of managing that better.
Free T3 really results should be obtained - many here test via private lab. Go to the Thyroid U.K. site for the link for more info. (Medichecks offers discounted labs every Thursday FYI)
Also did your GP get TPO and TG antibodies tested? Many GPs are fairly out of their depth with thyroid so there are some gaps in your info that should be sorted by further testing.
TSH was so high because FT4 and FT3 were low. FT3 is rarely tested in primary care unless TSH is suppressed <0.1 because they are looking for evidence of hyperthyroidism, not low FT3 in hypothyroid patients.
25mcg is a very small dose. 50-100mcg would be a more appropriate dose unless you have any of the conditions in the link below:
Perhaps you could email or telephone your GP and refer GP to the NICE prescribing info as it will take a damn long time to improve thyroid levels on 25mcg increments.
Brain fog is a common symptom. It will improve as your thyroid levels rise. Fatigue and 'depersonalisation' and mood changes are also common. Be very careful if you drive because research has shown that TSH >20 may impair driving reactions more than being over the drink drive limit. My co-ordination and spatial awareness totally deserted me. I went through most of a dinner service by failing to put plates and dishes properly onto the table or counter.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. thyroiduk.org.uk/tuk/about_...
For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.
It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
Hi WarriorDuck and welcome, you could return to your doctor and ask if there was a specific reason for starting you on such a low dose. Then you could ask to up it to 50mcg and if you feel unwell on that dose you could reduce it again. It might be because you've been so hypothyroid for while, your doctor is being cautious not to give your body a big shock or there may be other reasons so best to check it out as the doc knows your medical history.
As for symptoms, yes hypothyroid gives lots of weird symptoms. Slow to respond to people and feeling shut down is part of it. You will get back to normal self and your personality hasn't vanished even if it feels like it. Oncee your blood levels are right you'll start to feel normal again but it's going to take a while. There is nothing fast about thyroid conditions, that's one of the frustrating things.
You should get a blood test every 6 weeks and a dose increase. It takes about 6 weeks for all the Levothyroxine to get into all your cells to get an accurate blood test. Make sure you book a blood test every 6 weeks until your levels are right as your doctor may not tell you to.
You should take your levothyroxine on an empty stomach and leave at least an hour before eating or drinking anything except for water. You should not take supplements for at least 4 hours afterwards. I'm sure other people will give you lots of good advice.
They took my ferritin and b12 as well, both of which were on the low side of normal; I have started taking a vit b complex, as well as vit d despite them not testing for it. Will look to getting hold of some ferritin too.
I think I will book an appointment and see if they will trial me on 50mg, no harm in asking
I am currently in the process of switching to gluten free - I am an incredibly picky eater and old habits die hard, when first diagnosed I tried going gluten free straight away but it turned out to be something of a learning curve as I almost had no foods left I would actually eat! Have started switching out foods I already eat for gluten free versions as well as exposing myself to new healthier foods, although I haven't been tested for antibodies yet so not even sure I have Hashimotos, I will be pushing for this when I next go in.
I really appreciate the feedback guys, it's comforting to have people who know what they're talking about
If your B12 was really low then there will not be enough in a B Complex. What was your result ? Also you need a Folate result as it works in the body with B12.
How much VitD are you taking - again the dose should be according to your result. D3 is fat soluble so take with main meal or with some good fats and 4 hours away from Levo.
Ferritin ? - what was the result ? - how low is low ? 😊😊
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