TSH increase - is this normal?: Hi, I'm new here... - Thyroid UK

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TSH increase - is this normal?

vixstar84
vixstar84

Hi, I'm new here, will try and explain story as short as possible but question is regarding TSH. Have been v poorly and housebound since Oct 16. Had never had health issues previously. Started collapsing and severe pain and was diagnosed with endometriosis Mar 17. Had 3 surgeries last year where Stage IV endo and adhesions were found and excised. Had hysterectomy Mar 18, but kept ovaries and am still struggling with a multitude of symptoms (pain has improved) - I only have 3-4 days of a month where I don't feel horrendous. I am being passed from pillar to post and when I asked for a copy of my blood results I noticed my TSH has gone from 1.8 in May to 4.5 now. Dr this morning refused to do any further thyroid testing as says TSH is normal range and the increase is fine. My Nutritionest suggested checking T4, T3 etc and a full hormone check. Is an increase like this normal? I won't go into all my symptoms but it feels like my body is falling apart and am housebound/ bedridden most days. Also can estrogen and progesterone affect thryoid levels as I believe my hormones are main culprit but also don't understand how they can make you this poorly! Any feedback or advice very welcome as I feel like I'm hitting a brick wall and my Dr is making me doubt myself like they did with the endo but I know something is definitely not right!! TIA x

9 Replies
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shaws
shawsAdministrator

Welcome to our forum and members will respond. Pay no attention to doctors who don't even know the basics and that includes the majority of them, including endocrinologists

It is really amazing how little doctors and endocrinologists know but there are many helpful members and knowledgeable ones who will advise and help.

The following might come as a surprise to you but not to us - members. It is now a full-scale learning process if we've to recover - despite the ridiculous rules etc of diagnosing/treating patients.

thyroiduk.org.uk/tuk/about_...

Our TSH rises - it is from the pituitary gland when it tries to flag up the thyroid gland to produce more hormones. In other countries we're diagnosed if TSH goes above 3+ but for some unknown reason it was decided in the UK to make sick and symptomatic patients wait until the TSH reaches 10.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

A Full Thyroid Function Test is required and we have several private labs that do home pin-prick tests. If you decide you must be well-hydrated a couple of days before blood draw which has to be at the very earliest, fasting and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards.

TSH, T4, T3, Free T4, Free T3 and thyroi antibodies.

GP should test B12, Vit D, iron, ferritin and folate and all have to be optimal.

Post your results on a new post, with the ranges. Ranges are important for members to comment upon them.

The aim, for us, is to have a TSH of 1 or lower, with a FT4 and fT3 in the upper part of the ranges. Some doctors believe if the TSH goes lower than 1 that we've become hyperthyroid but that isn't true. People who have had thyroid cancer have to have suppressed TSH and don't come to harm.

(I am not medically qualified but have hypothyroidism which I had to diagnose myself, eventually, when TSH was 100.)

DelicateInput
DelicateInput in reply to shaws

The reason for the UK decision is cost. I've had a raised TSH for 17 years, at first about 5.5 then 2/3 years ago rising to 7. I was never offered treatment on the basis that this is normal.

I also notice that the UK changed the range for normal levels of T4. This used to be between 12 and 25. It has now changed to between 9 and 25. I guess the reason for this is to exclude large numbers who would be offered thyroid medication on the old range.

My T4 was quite high but has now dropped to 11, so a TSH of 7 and T4 of 11 is considered normal in the UK but not elsewhere.

SeasideSusie
SeasideSusieAdministrator in reply to DelicateInput

Delicateinput

I also notice that the UK changed the range for normal levels of T4. This used to be between 12 and 25. It has now changed to between 9 and 25.

The UK hasn't changed the range. There is no universal range. Ranges vary from lab to lab, it's based on local population.

My lab's range is 7-17, and years ago it was 11.8-24.6 so now there is 10 points difference between the bottom and top of range whereas before it used to be 12.8.

We often see 9-19 and 12-22 on here. There are others. It's quite common for the difference between the bottom of range and top of range to be 10 points.

I have never seen the ranges you quote and I have had thyroid tests in various locations.

If you are having severe symptoms like losing hair, being cold all the time, being very slow mentally, have froggy neck and eyes, and your T4 is low and TSH is high, then it would be a thyroid problem. I would put low as around 12 or under for T4 and over 5 as high for TSH. However, if these symptoms are not present, it is very controversial. Personally, I would prefer to wait until there was indisputable evidence.

SeasideSusie
SeasideSusieAdministrator in reply to DelicateInput

I have never seen the ranges you quote and I have had thyroid tests in various locations.

If you read posts on this forum you will.

And it doesn't matter if you would put low as around 12 or under, it depends on the range as mentioned in the other thread. In my area 12 would be exactly 50% through the range.

Well, if you tell me where to go, I will get a blood test done and when I present it to my GP they will tell me that it is the same result (ie my T4 is 11) and within range, regardless of what the lab in another area says.

SeasideSusie
SeasideSusieAdministrator in reply to DelicateInput

Delicateinput

OK - buy a kit from Medichecks or Blue Horizon. Their range for FT4 is 12-22.

With your range quoted above of 9-25 and a result of 11, you are 12.5% through the range.

Take your result of 11 and use Medichecks/Blue Horizon range and you are below range.

To be 12.5% through their range your result would come back at 13.25

But if you want to do this experiment you would have to do the Medichecks or Blue Horizon test at the same time as a test where the range is different and do them from the same blood draw.

SlowDragon
SlowDragonAdministrator

If you google endometriosis and Hashimoto's you will see there's lots of evidence they are linked

Hashimoto's is also called autoimmune thyroid disease and diagnosed by high thyroid antibodies

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Ask your GP to test vitamins and thyroid antibodies, or Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

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 money off offers.

All thyroid 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, GP will be unaware)

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 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 .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Thank you so much for your replies, this is really helpful and has made me doubt myself less which is hard when professionals are telling you everything is fine. My TSH I've mentioned above and I will post T4, T3 and antibodies once I have them - I have now ordered a private thyroid test through my Nutritionest. My B12 was 200 mark fluctuating from just below to above so am on supplements for that but know something much more is going on. Will persevere!!

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