Hypothyroidism- levels : I've had hypothyroidism... - Thyroid UK

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Hypothyroidism- levels

Charlyp90 profile image
5 Replies

I've had hypothyroidism diagnosed for around 7 years. Started off on 25mg and now on 125mg levothyroxine. It has been a struggle to have the dose of 125 from the Dr. Last blood test in Jan my tsh was 3.9 and reluctantly after I asked them to up the dose from 100mg they did.

I'm in a same sex marriage and we are going through fertility treatment in the next few months once I have lost another 2 stone to get my bmi below 35. The consultant there said my TSH needs to be below 2 for the best chances. My blood test yesterday came back as tsh 2.12 and ft4 22.

Dr said she can't up the medication because I will be below the range then. I told her it needs to be under 2 and she refused, said she would need a letter from the consultant to increase the dose. Thinking of moving Drs now as well. Just feel so frustrated. What do you all think. Sorry for my rambling.

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SeasideSusie profile image
SeasideSusieRemembering

Charlyp90

Dr said she can't up the medication because I will be below the range then. I told her it needs to be under 2 and she refused, said she would need a letter from the consultant to increase the dose.

Well, either you have a very strange range for TSH where a small increase in Levo will take you below range or your GP hasn't got a clue. Most TSH ranges start at around 0.2ish or 0.3ish, so there's an awful lot of leeway between that and your current level of 2.12

Either your GP or yourself needs to request the letter from the consultant so that you can progress with this.

This is for hypo patients generally, not specific to those wishing to conceive, but you could show it to your GP:

From NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

Charlyp90 profile image
Charlyp90 in reply toSeasideSusie

Thank you for that. Yes it seems they arent very clued up about the tsh levels. They increased the dose in January only after me asking and telling them how I was feeling because I felt sluggish and also what the consultant advised. A different Dr I spoke to they said they don't want to take me below range and 5 months after taking 125mg it is still 2.12 so hardly out of range like they said.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid

Ask GP to test vitamin levels and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

If you took levothyroxine before blood test ...high Ft4 is false high

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Obviously before considering pregnancy vitamin levels must be OPTIMAL

What vitamin supplements are you currently taking?

Charlyp90 profile image
Charlyp90 in reply toSlowDragon

I know I have thyroid antibodies as I had a test a few years ago. It would definitely be worth having my vitamin levels checked because at the time I had low vitamin d aswell. I have started taking vitamin d, iron, vitamin c, folic acid and B12 for the last 2 weeks but a blood test would definitely beneficial. Thank you for those links aswell.

I started taking levothyroxine last thing at night, no caffeine for 6 hours before and no food for a few hours because I found I was struggling to take it leaving at least 30 mins before food or drinks in the morning. Before my last blood test I took it at night about 11pm and the blood test was at 11am.

SlowDragon profile image
SlowDragonAdministrator in reply toCharlyp90

Vitamin levels need testing at least annually with Hashimoto’s

Obviously need to be optimal before any pregnancy

you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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.

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

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

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