Hypothyroidism diagnosed. First blood test results after starting levthyroxine but unsure what to do.

[Jenb01]

I was diagnosed with Hypothyroidism in November 2016 so I'm still trying to understand Hypothyroidism and how to help myself and manage the condition. I have a lot of Hypothyroid symptoms, the most severe/prominent symptoms are fatigue, tiredness, no motivation, weight gain, constantly feeling cold, pins and needles, hair loss and repeated headaches. My blood tests results were

Serum TSH level: 7.6 mIU/L (Range: 0.4 - 5mIU/L)

Serum free T4 level: 13 pmol/L (Range: 9 - 19pmol/L)

My Dr and I discussed what to do and as I had a lot of symptoms of Hypothyroidism we decided to commence treatment and he prescribed 25mg levthyroxine. My Dr said to do a repeat blood test in 2/3 months but could have this done sooner if there was no sign of improvement.

I waited 5 weeks and as things hadn't changed at all it was agreed the blood test could be done now. I had the test done at 9am and had fasted (I waited until after the test to take my thyroid medication). I've just called m surgery and received the results:

Serum TSH level: 4.8 mIU/L (Range: 0.4 - 5mIU/L)

Serum free T4 level: 13 pmol/L (Range: 9 - 19pmol/L)

My doctor has marked the results as normal and no action needed but my symptoms are still problematic and I have not experienced any improvement since commencing treatment.

Am I expecting too much too soon and being unreasonable/unrealistic in my expectations? I would very grateful if anybody could advise me on whether I should I wait and see if things improve or whether should make an appointment with my Dr and discuss my concerns further?

Thank you for any and all advice and help kindly given regarding my query and Merry Christmas to all. X

[Clutter]

Jenb01,

You are under medicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted.

Levothyroxine (T4): The main treatment for hypothyroidism. Treatment is usually started at either 25mcg or 50mcg per day, depending on the severity of the condition. Testing is carried out at various intervals and dosages increased over the next few months until the test results show within normal range. According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[Jenb01 in reply to Clutter]

Hi Clutter, thank you so much for the extremely speedy response and for the very helpful advice.

I did a quick search and saw that Dr Toft has a book called Understanding Thyroid Disorders. I have just ordered the book so I can hopefully educate myself (and my Dr!) on Hypothyroidism

I have made a Dr's appointment for next week (sadly I can't get an appointment with my actual Dr till 30 Jan so have to see another Dr in the practice) and I will take the book with me as back up.

Please may I impose upon your generosity and knowledge further?

How long does it take for the medication to work and for me to see an improvement in my symptoms?

Is there anything I can do to help myself to reduce the impact of the symptoms I am experincing?

Once again, thank you so much for your advice and assistance, I am very grateful. X

[Clutter in reply to Jenb01]

Jenb01,

As thyroid levels improve you should start feeling some improvement in symptoms but symptoms can lag several months behind good biochemistry.

Supplementing 200mcg selenium can help support thyroid but I don't believe anything other than a Levothyroxine dose increase is likely to be very helpful.

Hypothyroid patients often have low or deficient ferritin, vitamin D, B12 and folate which can present symptoms similar to hypothyroid so ask for them to be tested. Post your results and ranges in a new question for advice.

[shaws]

Your doctor is wrong! Once diagnosed and treatment has commenced, usually with 50 mcg of levothyroxine and thereafter six to eight weeks a blood test should be done and the aim is a TSH of 1 or lower. Not somewhere in the range as many believe. The ranges are really only for the purpose of diagnosing is what I believe. In other countries we are given medication when TSH is 3 - in the UK the guidelines state it has to reach 10 but some doctors will if it is above range.

We have to read and learn, unfortunately, because first of all doctors are unaware of clinical symptoms on which we used to be diagnosed and treated before blood tests were introduced.

The starting dose of levothyroxine is 50mcg - not 25mcg unless you are frail with a heart disease. Too low a dose can make our symptoms much worse as it rebounds on us. Make a new appointment saying you are extremely symptomatic and you've had advice from the NHS Choices for dysfunctions of the thyroid gland and it is recommended a TSH of around 1 with FT4 and FT3 towards the top of the range (they rarely do the Frees). T3 is very important. T4 (levothyroxine) is inactive hormone and T3 is the Active hormone which is needed in the billions of receptor cells, the brain contains the most. I shall give you a list of symptoms and you can tick yours off for your GP. Some don't like the internet at all, nor patients coming in with suggestions but it is your health but we have to be subtle.

web.archive.org/web/2010103...

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

The purpose of thyroid hormone replacements is to make us feel well with an optimum dose which suits us and with no symptoms at all. They are more concerned of the whereabouts of the tests than our clinical symptoms.

When next blood test is due also ask for B12, Vit D, iron, ferritin and folate if not done already. All should be at a good level to assist our recovery.

[Jenb01 in reply to shaws]

Hi Shaws, thank you so much for such a helpful and informative response.

I've looked at the list of signs and symptoms and I am amazed at how many of the symptoms I have but didn't realise they were related to Hypothyroidism! I'd just dismissed a lot of the symptoms down to general tiredness/age. I'm 44 and had a hysterectomy in 2005 but kept one ovary so HRT wasn't required. I was advised that I might experience early menopause so I just assumed I might be in the very early stages of the menopause and accepted that it was normal to experience these symptoms.

I was taking folic acid (5mg daily) and having B12 injections every 3 months but my Dr has now stopped both these treatments after my blood test results showed normal level in November 2016. He said that they they are within the normal range I do not need further treatment. My last B12 injection was in August 2016 and I stopped taking the folic acid early November 2016.

The blood test results were:

Serum iron level9.9 umol/L (Range 7 - 26umol/L)

Serum vitamin B12487 ng/L (Range 189 - 883ng/L

Serum folate: 12.3 ug/L (Range 4.8 - 19ug/L)

I have never had my Vitimin D or ferritin levels checked. Should I ask for all these tests to be done or just ask for the Vitimin D and ferritin levels to be checked?

Once again, thank you for taking the time to respond to my query and for your very helpful advice and sharing your knowledge with me.

[shaws in reply to Jenb01]

Doctors are apt to believe 'normal' in a blood test is also that the patient should be 'normal' and ignores the clinical symptoms the patient has (doesn't know any in the first place). So we have to read and learn and also B12 and Vit D are not strictly vitamins they are both pro-hormones and if deficient in either can lead us into more illhealth. You can supplement with B12 methylcobalamin sublingual (it then bypasses our stomach which might be not so good if we have low acid (common in hypothyrodism). Vit D3 should be supplemented but I suggest copying and pasting into a new post your results as I'm not good with advice on vitamins/hormones plus iron which is low.

scdlifestyle.com/2012/06/hy...

Hypo is a whole body experience and everything in our body is affected. When we develop stomach problems because the symptoms of high and low are so similar, they prescribe antacids which wont suit many hypothyroid patients.

lchriskresser.com/the-thyroi...

[SlowDragon Administrator]

One last suggestion

I don't think you have had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

NHS rarely checks TPO and almost never checks TG. NHS believes it is all but impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.

Medics only treat the low thyroid hormones that result from Hashimoto's, not the autoimmune aspects. But you really need to know if you have Hashimoto's, you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too.

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible