New and could use some advice: I'm new and not... - Thyroid UK

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New and could use some advice

Heappestre profile image
11 Replies

I'm new and not yet diagnosed. I have a call with the GP on Friday, but to be honest I've not had the best service from my GP unless I go in well informed.

I'm mainly worried about a variation in TSH in a short time.

I have a family history of hypothyroidism and currently take no medication what so ever and no supplements either. I do have symptoms, such as dry skin, bad memory, weight gain, and tiredness that doesn't go away be sleeping.

Test one:

11 April at 8am

Unsure if I had breakfast or not as I wasn't aware it makes a difference and I now can't remember.

TSH 4.72 (0.2-4.2)

This prompted the GP to run a TFT:

23 April at 8am

Had a cup of tea, but no food

TSH 7.5 (0.2-4.2)

T4 14.2 (12-22)

TPOab 426 (limit 34)

Is it normal for there to be such a difference in 12 days?

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Heappestre profile image
Heappestre
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11 Replies
helvella profile image
helvellaAdministrator

Many blood tests can vary by surprisingly large amounts over quite short times - though this is a little more than I'd really expect in a couple of weeks.

But, in my view, the low FT4, approaching the bottom of the reference interval, is more significant. As is the elevated TPOab test more or less confirming autoimmune thyroid disease - Hashimoto's or Ord's. (Same except Hashimoto's goes through a stage of there being a goitre.)

In any case where the thyroid is subject to autoimmune issues, it can release some of the stored thyroid hormones somewhat erratically. Hence TSH and FT4 could be expected to be more variable than in someone without that attack. And FT3 - if they had done that as well!

The TPOab plus currently raised TSH and low-ish FT4 is plenty of evidence. Add in your symptoms and you should be diagnosed and offered treatment. Well, that is how I see it but I'm just a patient.

I suggest you should also be tested for iron (hopefully not just ferritin), B12 and folate as well as Full Blood Count.

Heappestre profile image
Heappestre in reply tohelvella

Thanks for the information, I suspected something wasn't right.

Full blood count was done at the same time as the first TSH and shows nothing outside of the ranges. The first test was part of the NHS 5 yearly Health Check, so I have a lot of results from that day, but not iron, foliate or B12. I shall ask about those on Friday

helvella profile image
helvellaAdministrator in reply toHeappestre

Outside of ranges really is not sufficient - though all too often that is the sole criterion used for each test.

This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.

The normal range: it is not normal and it is not a range

helvella.blogspot.com/p/the...

greygoose profile image
greygoose

Hi Heappestre, welcome to the forum. :)

Yes, it is a big rise in 12 days. But TSH levels follow the levels of thyroid hormones - T4 and T3. And we don't know what your FT4 was on 11th April. It could have been higher as you have Hashi's, and levels tend to jump around.

Did your doctor tell you you have Autoimmune Thyroiditis - aka Hashi's? Do you know how that works?

Best not to have a cup of tea before a blood draw, just water. The cafeine can lower the TSH, as can eating some foods.

Heappestre profile image
Heappestre in reply togreygoose

Thanks greygoose, I suspected something was going on, but as usual my GP surgery are not very transparent. Basically I had the routine 5y NHS tests, that was test 1 and that led to test 2. Then yesterday, I got a text saying my appointment request with the GP was approved. I hadn't requested an appointment, so I went digging into the NHS App and Patient Access and found out that this Fridays appointment is to discuss the blood test results.

I suspect I'll be told I have Hasi's and that they will retest my TSH in 3 months. My surgery are not very good at being proactive, unless I push for it. So your information is really useful as I can ask about it.

I know now about the fasting and won't make that mistake again!

Sparklingsunshine profile image
Sparklingsunshine in reply toHeappestre

With two over range TSH tests and a high antibody result they should really be offering you some Levo, but it depends on how stringently they stick to the guidelines. Some GP's wont offer treatment until TSH is over 10. If you dont get any joy with a particular GP always try a different one in the practice. Its obvious your thyroid is failing. Its just going to get worse.

Heappestre profile image
Heappestre in reply toSparklingsunshine

Well, that's part of the reason I'm asking advice now. The GP I spoke to that ordered the second test is not the same GP as the one I'm going to speak to on Friday. It's extremely rare in my surgery to talk to the same GP twice in a row, even on the same condition, hence I need to be as prepared as I can be and really appreciate everyone's replies.

And yes, that's my conclusion/worry too. It's only going to get worse and the rate seems to be quite fast!

SlowDragon profile image
SlowDragonAdministrator

Request GP test vitamin D, folate, ferritin and B12 plus coeliac blood test too as per NICE guidelines

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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...

Heappestre profile image
Heappestre in reply toSlowDragon

My husband is on a gluten free diet as he finds it significantly improves his tiredness and other symptoms, plus helps with his diabetes, so evening meal are already gluten free. I went completely gluten free when he first did, but that was a while ago and possibly before my thyroid started becoming an issue. I started eating gluten again a while ago and didn't find a lot of difference at the time, but maybe I need to give it another go now.

I shall try and get the GP to test for the vitamins etc if they don't offer it on their own. They are usually quite good at following NICE guidelines, but won't go even slight outside of it. So with a TSH of under 10, I'm not expecting them to offer any medication yet, despite lot of symptoms.

SlowDragon profile image
SlowDragonAdministrator in reply toHeappestre

Starting levothyroxine - flow chart

Two tests with TSH over 5, high thyroid antibodies and symptoms……you should get trial on levothyroxine

gps.northcentrallondonccg.n...

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

HealthStarDust profile image
HealthStarDust

You have subclinical hypothyroidism which should prompt GP to consider a trial of levothyroxine at least, as per NICE Guidelines.

Most GPs are willing to treat with positive antibodies, and for women who are hoping to conceive.

With your symptoms, family history, and blood tests results, I would imagine you require treatment and the GP will hopefully oblige. And, given your experience with your GP I am sure they will want to.

Usually, a second blood test isn’t ordered until a couple of months to confirm diagnosis mind.

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