First Post - TSH Level Erratic: Hi, I was... - Thyroid UK

Thyroid UK

137,935 members161,763 posts

First Post - TSH Level Erratic

Snoopy72 profile image
4 Replies

Hi, I was diagnosed with hypothyroidism in May this year, my levels were:

Serum TSH level 130.80 mIU/L [0.27 – 4.2]

Serum free T4 level < 1.3 pmol/L [12.0 – 22.0]

Full blood count Mild monocytosis. Rouleaux +

Haemoglobin concentration 100 g/L [115.0 – 160.0]

Red blood cell count 3.32 10*12/L [3.8 – 4.8]

Haematocrit 0.31 L/L [0.35 – 0.45]

Monocyte count - observation 1.6 10*9/L [0.1 – 1.0]

All other tests, including B12, Ferritin, Folate & Iron, were all normal. I was put on 50mg of levothyroxine and told I would feel better in a few days.

I have been suffering with numerous symptoms and eventually got to speak to a Dr on 15th August (not the same Dr that originally phoned me with my results in May) who advised 50mg was far to low for my levels and that I should have had a TFT retest after 6 weeks. I was increased to 100mg straight away and had bloods for TFT done. The results show:

Serum TSH level 7.12 mIU/L [0.27 – 4.2]

Serum free T4 level 8.1 pmol/L [12.0 – 22.0]

Dr feels my TSH wouldn't have come down by so much so quickly on 50mg. I have been told to remain on 100mg levothyroxine and retest in 6 weeks. At this stage she may then refer me to an endocrinologist to look into further.

Does anyone have any ideas on why my levels have reduced so quickly? I feel a little lost as to what is happening, I previously posted on a different forum but didn't receive any advice on what may have caused this to happen.

Any advice/suggestions/ideas would be very much appreciated.

Thank you.

Written by
Snoopy72 profile image
Snoopy72
To view profiles and participate in discussions please or .
Read more about...
4 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum

Serum TSH level 130.80 mIU/L [0.27 – 4.2]

Serum free T4 level < 1.3 pmol/L [12.0 – 22.0]

You must have been very unwell with these results.

Thyroid stimulating hormone is a pituitary hormones which rises to signal thyroid to work. Your was very high as your Thyroid hormones were very low.

Serum free T4 level < 1.3 pmol/L [12.0 – 22.0]. This is seriously low levels. How were you functioning daily?

There is another thyroid hormone FT3 (free triiodothyronine). a small quantity is produced by the thyroid but most is converted in the body from FT4. It’s the more stronger hormone and used throughout body.

You have not had FT3 tested. So you don’t know if this was dangerously low or better preserved - as the body can often prioritise FT3. With such a high TSH I can’t image it was very healthy.

50mcg is a standard starter dose.

Usually this is tested 6 weekly and increases by 25mcg - until TSH alway under 2. this is for standard cases. With your results having a very high TSH and undetectable (<) FT4 I would have expected doctor to do this more timely eg every 4 weeks.

“Dr feels my TSH wouldn't have come down by so much so quickly on 50mg”

The TSH has dropped on a low dose. - I think is just adjusting to having new FT4 & FT3 levels. Firstly we don’t know how your FT3 has altered as we don’t have results and your FT4 is still very below range. TSH is unreliable. Focus on FT4 & FT3 you will likely need several more increases.

Watch out for mixing of brands with new strengths of dose that are issued. Try to stick with same brand - especially if you have found one which suits.

There is a chance the TSH result is wrong - it can be interfered by antibodies (will come back to this) but your TSH is very high as FT4 (and likely FT3) we’re very low.

Do you take Biotin? Eg in a multi or b complex supplement - This is known to interfere with results.

If you been on 100mcg for 6 weeks a further increase should be given.

Have you had thyroid antibodies tested? This really should have been tested when first results were found but as you were clearly hypothyroid and in need of replacement the doctor has taken step of treating.

When results are borderline, thyroid antibodies are tested to see if decline is likely. No question you needed replacement- But you might like to know if you have an autoimmune condition attacking thyroid. This is most common cause of under active thyroid.

“B12, Ferritin, Folate & Iron, were all normal”

Really? As that would be unusual with such low thyroid. If normal means in range were the low in range? You need optimal levels - (levo wont work effectively otherwise). Without good nutrients to convert it to FT3. In range which is not same as optimal.

Please add result & ranges.

Do you have existing medical issues?

Did dr do any other tests? Eg iron panel, has your cortisol been checked?

Was hemoglobin good? As concentration low. Full blood count has to be viewed with other results.

When you test fast overnight. Book draw early in morning. Delay dose until after draw. This shows highest TSH lowest FT4.

SlowDragon profile image
SlowDragonAdministrator

Wow …pretty high TSH….and very low Ft4 at diagnosis

GP who put your dose up to 100mcg is correct…..bloods should be retested in 6-8 weeks time

Approx how much do you weigh in kilo?

Meanwhile you need to take it easy.

You were extremely hypothyroid and it’s going to take several months to recover.

Have you had thyroid antibodies tested for autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Please add actual vitamin D, folate, ferritin and B12 results and ranges

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

How long since dose was increased to 100mcg

Which brand of levothyroxine are you currently taking?

Many people find different brands are not interchangeable

humanbean profile image
humanbean

Haemoglobin concentration 100 g/L [115.0 – 160.0]

Red blood cell count 3.32 10*12/L [3.8 – 4.8]

Haematocrit 0.31 L/L [0.35 – 0.45]

Monocyte count - observation 1.6 10*9/L [0.1 – 1.0]

All other tests, including B12, Ferritin, Folate & Iron, were all normal.

+++++++++++

The above results are surprising and confusing.

With haemoglobin very under range you are definitely anaemic. Your under range red blood cell count is also consistent with you being anaemic, as is the low haematocrit.

You should look up your results on this website - it can be quite helpful :

labtestsonline.org.uk/under...

Another link that could be helpful is :

irondisorders.org/wp-conten...

What is confusing me (I'm not a doctor and have no medical training) is that because you are clearly anaemic it makes sense that there must be a reason for it. Obviously your appalling thyroid hormone levels will be causing problems. I will be interested to know if being treated for your thyroid problems will reduce your anaemia. And the commonest causes of anaemia are low iron, low ferritin, low B12 or low folate or some combination of these. But you are saying your results for all these were "normal". So, either your doctor was lying to you, or he/she has a very peculiar definition of "normal", or your results were in range but really low in range, or you have a chronic bleed somewhere (usually this would happen in the gut, and it would effect nutrient levels too), or you have some other form of anaemia.

What has your doctor done about your anaemia? Are you being treated with anything?

Snoopy72 profile image
Snoopy72

Thank you all for your advice, its very helpful and interesting. I hope you don't mind me replying to you all in one message. I have provided full blood tests taken to-date.

Still suffering with a long list of symptoms – its has been, and still is, a real struggle. Have been signed off since May. I am researching as much as I can in order to make changes in my diet & lifestyle to help as much as possible, so the links provided are very useful. I will be getting private blood tests done to cover everything required so I can, hopefully, understand what has happened

To answer to your questions:

I do not take Biotin or any other supplements. I am however on other medication; Amitriptyline 10mg – prescribed for chronic back pain diagnosed 3 years ago. Cerrelle 75mg, Citalopram 30mg. I take these before bed and Levothyroxine as soon as I wake and wait 1 hour before having anything else. I also regularly take Sudafed as suffer with constant sinus problems. The surgery pharmacist said none of these will affect the levothyroxine. I was also advised I am pre-diabetic.

I haven't had a Cortisol check or an antibodies tests. Although Dr did confirm it has probably been caused by Hashimoto's, no testing for this was offered.

I have been getting a gentle pressing on my throat and a feeling as though my glands are up, Dr could not feel a goitre but advised to keep a check on it.

Although the Anaemia is, according to Dr, mild, I am not being treated for this at the moment. However, if it does not improve she has stated I will need to start treatment.

I currently weigh 85kg – I have lost over 12kg since taken Levothyroxine.

I was only increased to 100mg a week ago (16th August) so will be a little while before I feel any effects. The manufacturer is Accord-UK Ltd.

To be honest it has been a lot to take in, especially as I am struggling with lack of concentration and memory loss at the moment & the pains in joints & muscles along with extreme tiredness and numerous other symptoms, isn't helping.

I have so far received very little information from the Drs so this forum is really helping me to not feel so alone in all of this; for which I am extremely grateful.

Total Test Results 17/05/2022 - 16/08/2022

You may also like...

New thyroid results to add to my previous ones

87 miu/L [0.27 - 4.2] Serum free T4 level 15.0 pmol/L [12.0 - 22.0] Feb 18 Serum TSH level 3.18...

TSH Levels 2 Year Post Thyroidectomy

take levo that morning before having blood drawn) TSH - .44 (.27-4.2) Free T3 - 2.57 (2.5-4.3)...

Advice on TSH levels please

reducing my Levo to 50mg! He wants me to have a blood test and if the TSH level is lower than 0.34...

Worried about symptoms - normal TSH

Jan-2017 Serum TSH level: 3.97 mIU/L (0.2 - 4.2) Serum Free T4 level: 12.2 pmol/L (12.0 - 22.0)...

High cholesterol, high blood pressure & subclinical

results Serum TSH level 5.13 mIU/L [0.27 - 4.2]; Above high reference limit Serum free T4 level...