Newly Diagnosed - Very High TSH: Hi, I had blood... - Thyroid UK

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Newly Diagnosed - Very High TSH

FriedStuffWithCheese profile image


I had blood tests a couple of weeks ago and my TSH is 44.6 (I can't remember the range exactly, think it was (0.2- 4.8). The Surgery queried the result with the lab and were assured it was correct, no chance it had been contaminated. My last test was 2017 and my TSH was around 2. I had tested to have antibodies

I've got a prescription for levothyroxine. starting off on 25mg for a week, then moving up to 50mg. to stay on that, have a blood test after 3 weeks then go back to GP surgery the following week. Nurse practitioner said it may take some tweaking and thinks I may need to be on 75mg, hence the test at 3 weeks.

My Vit D was also a bit low at 31, but it's been lower. Got a prescription for that too.

Although I've been thinking I've had a problem with a thyroid for a while but tests not showing it, I was so surprised at how high the TSH was, and didn't ask about T3 or T4. Do labs automatically test T3/T4 or is that something I should ask about being done?

6 Replies
SlowDragon profile image

You may eventually need more than 75mcg Levothyroxine, but dose has to be increased slowly

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Levothyroxine should always be taken on 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 more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

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. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

FriedStuffWithCheese profile image
FriedStuffWithCheese in reply to SlowDragon

Thanks, that's very helpful. Think I will see if they tested T3 & T4.

MissGrace profile image

I wouldn’t worry too much about the high TSH. Mine once went much much higher than this and I’m sure there are others on here who could beat me in high TSH Olympics! 🤸🏿‍♀️🥛

FriedStuffWithCheese profile image
FriedStuffWithCheese in reply to MissGrace

I wasn't worried as such - just really surprised as the last test it was 2, so when she said I needed some medication for my thyroid I was expecting it to be just out of range. I had to ask what it was which was a bit odd given they'd queried it when it came back from the lab.

SlowDragon profile image

Previous post shows low vitamin D, folate, B12 and ferritin

Have you been supplementing these regularly ever since?

They will need retesting

Just wondering.....have you recently given up smoking? This can cause rapid worsening of Hashimoto's

But it can be spontaneous

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone conversion and uptake

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

FriedStuffWithCheese profile image
FriedStuffWithCheese in reply to SlowDragon

Yes I did recently stop smoking, about 5 months ago! My mum had a similar experience - gave up smoking, diagnosed with angina had an angioplasty then diagnosed with hypothyroidism. I seem to remember her TSH was v high too (she's since passed so can't ask).

The last 12 months have been very difficult and I'm afraid I've not been maintaining my other vitamin doses. I've got a new prescription for Vit D 20,000IU and to take 2 per week for 4 week then 1 a week for 8 weeks.

The nurse practitioner said my iron was a little low but not to treat atm. I'm aware this now sounds silly, but I was quite accepting if this and didn't ask for levels. I'm going to ask for a copy of my results next week.

I've considered gluten free before. In all honesty, I am reluctant as I have 4 children, 2 with special needs including a restricted diet and I'm just a bit keeping a float. It's something I may revisit when things are a bit calmer.

Thanks again

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