Newly Diagnosed: Hi I have just been diagnosed... - Thyroid UK

Thyroid UK

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Newly Diagnosed

lt1806 profile image

Hi I have just been diagnosed with an under active thyroid, after begging for help. I had piled on over 2 stone in the last 10 months and have been feeling exhausted, achy anxious and depressed. The docs told me it was due to perimenopuse I’m 43! Anyway they finally took bloods 8 weeks ago and again last week. I only managed to get a copy of the latest one.

Serum Tsh level 6.41miu/l (0.27-4.20)

Serum t4 level 11.1 pmol/ l (12-22.0)

Docs says just out of normal range? These figures mean nothing to me so any help would be appreciated. She has started me on meds of 25 micro grams of thyroxine not sure of what brand yet as pharmacy too busy and I have to go back later. All I know is I have very achy joints in hands knees and constant swelling over night. I feel exhausted all the time despite having a reasonable nights sleep. I am on fluoxetine as have been suffering with depression and anxiety for the last 18 months. Are these things symptoms or unrelated ? Is this something that will go away or is it going to get worse? Sorry these are all questions I forgot to ask?

Thank you for any advice given please, # feeling confused as to what this will mean in the future.

14 Replies

Sorry to hear about your diagnosis but it's not the end of the world. Hopefully you'll be one of the patients who has a good response to thyroxine. You'll be on a dose of 25 mg for six weeks then they'll test your bloods again. As your doc says you're not too far out of range, my TSH was nearly 50 and I was exhausted, gaining weight and suffering memory problems. The aches and pains are also thyroid symptoms but best to get them checked too. I have heard that anti-depressants cause weight gain but can't recall what type this relates to. Your doc should know, or check the PIL.

lt1806 profile image
lt1806 in reply to pffft2017

Thank you very much for your response. All advice is greatly accepted whilst I get my head round it!

shaws profile image

Welcome to our forum and I am sorry you have developed hypothyroidism a common condition.

You now have to read and learn from members posts/comments as few doctors in the UK (even endocrinologist) know best how to treat hypothyroidism.

25mcg of levothyroxine is a very small dose. 50mcg is usual except if you are very frail with a heart disease.

A blood test should be done every six weeks and it should be as early as possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards You should have a 25mcg increase every six weeks until TSH is 1 or lower. Many GPs think if the TSH gets into the range (even the top) we're on sufficient but that's not the cas. We usually take levo when we get up with one full glass of water and wait an hour before eating. Or you can take at bedtime if you prefer as long as stomach is empty but you miss night dose if having a test next a.m. and night dose as usual on the same day.

Ask for B12, Vit D, iron, ferritin and folate to be tested as we usually have deficiencies.

lt1806 profile image
lt1806 in reply to shaws

Thank you this forum has already been a great help.

shaws profile image
shawsAdministrator in reply to lt1806

This is a link to the clinical symptoms:-

The depression is very likely due to untreated hypothyroid disease. The aim of Levothyroxine is to normalise hormone levels and become symptom free. Fluoxetine can affect how well you absorb and utilise thyroid hormone.

Ask doctor to check TPO antibodies (Thyroid Peroxidase antibodies). And vitamin D, B12, folate and ferritin as all these, if low, can cause depression. When you have results then post here as docs often say all ok but bumping along bottom of the NHS range will not help you recover.

Your TSH is above the lab range and FT4 is below lab range showing your thyroid is struggling. You need to know if you have autoimmune thyroid disease as other factors could affect thyroid function too.

If TPO antibodies are raised it indicates autoimmune thyroid disease.

SlowDragon profile image

First thing is, you need to see what other things have been tested. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

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 Thyroid antibodies are raised

Bloods should be retested 6-8 weeks after each dose increase

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

But see what you can get GP to test first

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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

Link about antibodies and Hashimoto's

List of hypothyroid symptoms

NICE guidelines saying how to initiate and increase.

Standard starter dose is 50mcg Levothyroxine. Dose is increased slowly in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

Thank you for your response. My antibody test was normal so not Hosimoto! I will ask on my next appointment about vitamin levels if not will have to go privately! I just want to feel my age and not like a geriatric! Thanks again x

SlowDragon profile image
SlowDragonAdministrator in reply to lt1806

If TPO antibodies are negative, NHS usually refuses to test TG antibodies

Suggest you double check both were tested. Plus get vitamins tested if not been done yet

Any tests NHS won't do, can be done privately

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

SlowDragon profile image
SlowDragonAdministrator in reply to lt1806

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Make sure they give you the same brand of Levo everytime. The chemist will swap the brand's at will.

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Happy to share my experience as it may be a little different to most. I started suffering lethargy, weight gain, anxiety and much more many years before I was diagnosed. My tests were within range and I was treated as if I was putting it all on. Eventually a new doctor started at my surgery and I got speaking to her, she did the tests which were again within normal range. But then came the change in approach, she ignored the tests and took more interest in my symptoms and family history. I was prescribed 25ug Thyroxine and told to come back in four weeks, prepared for disappointment if there was no change in my condition.

Four weeks later I returned and was feeling quite a bit better than I had felt for years, my bloods were tested and I was called back to see the doctor. It was quite a shock and totally unexpected when I heard that my levels had dropped of the scale, I was actually feeling better. Over the months I settled on 175ug, eventually reduced to 150ug, but I had my life back. One thing I will warn you about though is the possible side effects, usually from the condition more so than the drug, and especially as you get older. I now take my medication based on how I feel but the symptoms of being under can be the same as the symptoms of being over. For now stick with the docs orders and get regular blood tests, record the results in a notebook along with a note of how you are feeling and the dose you are on at that time. If you miss a day or two mark you intake as 0 and complete the rest as usual, you may feel fine for days after missing a dose and then take a bit of a hit some days later. Hope this helps.

Thank you kinglouie, i think your right im just going to hsve to hold on tight til tgey get my levels right. Are youvsaying it really a matter of adjustment throughout your life as and when you feel symtoms? The side effect you mention is that because of tge disease or the meds? My main 2 probs are fatigue and very painful joints arms hands fingers ankles. Is this all normal or could it be a red herring? Also having trouble with eyes and the terrible weight gain x

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Hidden in reply to lt1806

The levels considered normal for everyone are quite wide however these are very individual, ask your doctor to work with you to find a level that works for you. Unfortunately this can be a slow process and even when you find that level it may alter depending upon your circumstances. The thyroid can kick in and out, and you need to treat how you feel, if you are like me you will gradually notice patterns related to the time of year, your diet, your lifestyle and the winner of the Grand National (could be anything).

Medication may help the weight problem to a point but really things will never be perfectly normal and you will have to adjust your diet or get more exercise to control your metabolism. You would be amazed how many things are affected by a thyroid condition and the replacement therapy will only help with a few of them. You may find foods that make you feel terrible because your body is not able to process them so you will just have to avoid them. The weird thing is these foods can change over time, you might find yourself able to tolerate something you were avoiding for the last 6 months while it is now something else setting you off.

The Thyroid gland is close to the top of a chain of body control systems, a bit like the engine management system in a car, and there is no magic drug available to completely fix the problem, good news is it will help you cope and more importantly it will keep you alive. A final warning though, this condition can also affect your mental state so if you are feeling anxious or low just be aware it may be coming from something your medication is not dealing with. Take note of what you are eating and especially things that help your mood or cause you anxiety, you know what to avoid.

Tell your friends about your condition, warn them that you may not be yourself sometimes and that you hope they understand. It's a good idea to let your employer know as well as unfortunately you now qualify as a disabled person, understanding your possible mood swings will help your employer cope. The good thing is that you are protected by disability legislation and this is something you may appreciate if things get a bit tough for a while.

Good luck!

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