TSH has risen and am on 100mcg: Good morning... - Thyroid UK

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TSH has risen and am on 100mcg

Jeanette56 profile image
6 Replies

Good morning everyone just a little advice really, I have Hashimotos was all diagnosed in December 2023 this is when I was started on a proper dose of thyroxine(50mcg). My Tsh then was 9.7, T4-18. My next blood which was 8 weeks after my TSH 6.6 T4 19.6 T3-4.9, I then got put on 75mcg, another blood test 8 weeks after that TSH 5.1,T4 19.6, I was then put on 100mcg which I was told to be on for 3 months and then come back which is did and got my results through yesterday TSH 10 and T4-18.5. I have got my appointment through for the endocrinologist for September, I rang them for advice or if I could been seen earlier, which still waiting to hear back. I take my tablet in the morning first thing and don’t eat or drink anything at least 1 half hours or two hours and I take it every morning. I am tired, my hair is falling out, my eyebrows at the top have fell out, I struggle to get out of bed in the mornings, low mood. Loss of appetite , I have lost weight, feeling sick a lot. I have completely changed as a person since i started to feel unwell in September 2023. I have to leave my job due to this as I couldn’t work the hours. Now am waiting to start a new job and I thought I was getting better but now tsh has doubled whilst being on 100mcg in the last 3 months. What else can be done and what dose increase should I be getting on my appointment on Monday with GP it’s not my usual GP she’s actually lovely but she’s on holiday for 3 weeks.

I don’t really take any vitamins or anything if there is any that I should take let me know and I will get.

Thank you

Jeanette

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Jaydee1507 profile image
Jaydee1507Administrator

You havent given the range for FT4 which is important as ranges differ between labs. What is the range?

Your high TSH on 100mcgs Levo is showing an absorption problem as I would expect it to be lower. Are you sure you're not taking Levo with any other medicines?

Sometimes people find it easier to take Levo at bed time and this can help with absorption.

Its essential to get vitamin levels tested, then you know what you need and how much.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Jeanette56 profile image
Jeanette56 in reply to Jaydee1507

No am not taking any other medication. I eat healthy, don’t drink or smoke and I do go the gym. I stopped going as much when I was first ill but I try and go frequently as that what I enjoy.

I got all them done a few months ago and they was okay.

lab ranges for T4 12-22.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Jeanette56

Getting vitamin levels to optimal is essential so get your levels tested.

Try taking Levo at bedtime.

Your FT4 is 65% of range so time for the next dose increase of 25mcgs.

humanbean profile image
humanbean

Some of your problems could be caused by low nutrient levels. You say your results were okay but what were the actual results and reference ranges?

We are interested in vitamin B12, folate, vitamin D and ferritin, but if you have results for any other nutrients they would be of interest too.

greygoose profile image
greygoose

TSH 6.6 T4 19.6 T3-4.9

TSH 5.1,T4 19.6

TSH 10 and T4-18.5

As far as one can tell without the ranges - pleeeeeease, always put ranges because they vary from lab to lab - but as far as one can tell, these numbers do not indicate and absorption problem - you absorb through the gut very well to have an FT4 of 19.6 - they suggest a conversion problem. We only have one FT3 result, it's true, but that one looks very low compared to the FT4 done at the same time.

There can be very many reasons/causes of poor conversion, but one of them would be low nutrients. So, you do need your vit D, vit B12, folate and ferritin tested. And any that are sub-optimal should be supplemented. It really doesn't matter how well you eat, how good your diet is, because your stomach acid is more than likely too low, so digestion and absorption of nutrients will be compromised. It's the same for most hypos. :)

SlowDragon profile image
SlowDragonAdministrator

you also need coeliac blood test if you’re not on gluten free diet

Hashimoto's 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.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

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

nuclmed.gr/wp/wp-content/up...

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

restartmed.com/hashimotos-g...

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

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