I’m a 23 year old female and went to see my doctor yesterday regarding my underactive thyroid. I’ve been on levothyroxine for around 2 years now and am on a dosage of 75mg. I was shown history of my test results and each time my dose had been increased, my TSH would rise quite significantly. Surely this must mean the medication isn’t working if my TSH continues to increase? It is currently at 10.6 when it should be between 0.27-4.20 in the UK. My T4 is within range at 13.7 (should be between 12.00-22.00). My doctor suggested I raise the dosage of my medication again but I’m feeling hesitant. I also suffer from digestive issues and feel since being on the medication I’ve become quite anxious too.
Has anyone had any similar experiences or could give me some advice? Thanks
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LPS1
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75mcg is only one step up from starter dose of 50mcg
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
So your doctor is correct to say you need 25mcg dose increase in Levothyroxine
Anxiety is common hypothyroid symptom
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Bloods should be retested 6-8 weeks after each dose increase
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
If vitamins and antibodies have not been tested, request they are
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).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Gut issues are extremely common with Hashimoto's. Gluten free diet can often help significantly
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
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
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.
Thank you for your advice. I’m on a gluten free and lactose free diet - I’ve had a full thyroid panel done privately along with vitamin levels and they were all in the normal range. It’s just the TSH that is elevated and keeps on increasing regardless of the dose. I do think the levothyroxine plays a part in irritating my stomach though which is why I don’t particularly want to increase.
If you are dairy free you will need Teva brand of Levothyroxine. Or, if Teva upsets you, then liquid Levothyroxine is possible, but it's expensive and likely need to see an endocrinologist to get prescribed
Your results clearly show you are under medicated and hypothyroid
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
It seems to me, very obvious, that your doctor is another who doesn't know very much about the thyroid gland and its functions.
Like the majority of members on this forum, we have read and learn how best we, the patient, can improve by reading/asking questions and following advice.
The aim, once we're diagnosed as hypothyroid, is a TSH of 1 or lower and a Free T4 and Free T3 towards the upper part of the ranges.
When you give numbers, always quote the ranges as labs differ in their machines and so do the ranges.
The aim once we begin levothyroxine is to have a TSH of 1 or lower with both FT4 and FT3 in the upper part of the ranges. The aim is that we feel we have 'normal' health and can do everything we used to without effort.
Insist on an increase of 25mcg now and in six weeks get another test and so on every six weeks until your TSH is 1 or lower - not 'somewhere in the ranges' as most doctors seem to think
All blood draw should be at the very earliest, (make appointment well in advance). It should also be a fasting test (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.
The aim is a TSH of 1 or lower with both Frees (T4/T3) in the upper part of the ranges.
Vitamin B12, Vit D, iron, ferritin and folate have also to be optimum.
Everything in our body is affected by hypothyroidism and (I am not medically qualified) believe if you gradually increase your dose by 25mcg every six weeks that you will begin to feel a lot better, i.e. your digestion too. If everything in our body slows down due to insufficient hormone replacement, we will feel unwell, we will also have symptoms we didn't have before.
Always get a print-out of your results with the ranges. Also ask for B12, Vit D, iron, ferritin and folate to be checked. These also must be optimum and others will suggest how to improve them if they are also low. Symptoms will also occur if our dose is too low and this is a list.
If your TSH is rising despite increases in dose - not that you've had many increases - it rather sounds like you aren't absorbing it. How do you take your levo? Do you take it on an empty stomach and wait at least an hour before eating or drinking anything other than water? Do you take any other medication/supplements at the same time as your levo?
I was taking it first thing in the morning on an empty stomach. I now take it just before I go to bed on an empty stomach just to see if that makes any difference
Especially the point about wanting TSH under 2 or even under 1, when levothyroxine dose is correct.
LPS1, and any other younger women reading - the “normal” range max of 4.2 is definitely not what you want if you are planning a family or having fertility problems.
For women pre-conception, the max was 2.5, back in 2015, when I had unfortunate reason to find out. My GP was not aware.
I can’t find the TSH guideline range (normal or pre-conception) in the NICE guidelines just now... if anyone knows of one, please post.
(Mine has gone up to 4 (from very low) in the last year, which GP is unconcerned about :-0
Not sure i feel different! Have gone gluten-free the last 9months, hoped to feel loads better but TPO abs are worse.
Due to talk to GP again, so will check the links above and go armed with info.)
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Rundown of TSH, T3, T4
The relationship between Tsh and T4 
TSH has dropped below range
T4 too high with normal TSH
