Newly diagnosed hypothyroidism - advice sought ... - Thyroid UK

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Newly diagnosed hypothyroidism - advice sought please.

Sal777 profile image
12 Replies

I saw my GP on 1st December due to feeling what I thought were increasing symptoms of menopause - extreme fatigue and lethargy, weight gain, hair loss, brain fog etc. Blood tests showed hypothyroidism and I was started on 100mcg levothyroxine which I have taken for 4 weeks now, still feel no better at all, but I suspect because nothing but the hypothyroid diagnosis has been addressed yet.

Due to finding this wonderful, enlightening site - reading a mine of information, I requested a copy of my blood test results which I have attached and speak for themselves.

TSH level of 55 was a bit of a shock, but I don't know whether I should be alarmed by this.

A quick google search has informed me that MCV high level indicated macrocytosis anemia due to low B12/folate levels and is common amongst those with hypo, but my GP must have been unaware and asked how much alcohol I am consuming!

I'm aware that cholesterol levels are also due to diagnosis of hypo, (I have a pretty healthy diet) but again this was not discussed with my GP.

He advised to wait until I'd taken levothyroxine for 6 weeks and another blood test to examine my results further.

My next blood test is 2 weeks away, but as I have learned from this site, will not test for T3 (I also want to find out where my hormones are amongst all of this as also taking HRT). An appointment with my GP to discuss next blood results will take another week or 2.

So I've arranged a private blood screen (advanced well women blood test) with medichecks next week which provides all biomarkers for thyroid, vitamins, minerals, hormones and others also.

What I need is some advice in the interim regarding the blood test results I've attached: which vitamin supplements I should start to take now and dosages, to at least get my levels improved so I will hopefully start to feel a little more human again?

Thanks in advance!

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Sal777
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shaws profile image
shawsAdministrator

You don't need to be anxious as you've now been diagnosed and started on levothyroxine.

Don't worry too much about your TSH result, as I had to diagnose myself after my GP phoned to tell me I had no problems - he didn't know that someone whose TSH was 100 had developed hypothyroidism.

Once you are on an optimum dose (i.e. you feel well and symptom-free) as you should have a small increase about every six weeks after you've had a blood test.

The method for blood tests is:-

Make the earliest possible blood test. It is a fasting test but you can drink water. Don't take thyroid hormones until after your blood test. Also take levothyroxine on an empty stomach with one glass of water and wait an hour before you eat.

Sal777 profile image
Sal777 in reply to shaws

Thanks for your advice, 😊I’m adhering to the advice given here as I’m learning GP’s aren’t always knowledgeable.

I’m not taking any vitamin supplements at all so wanted to know which are recommended (based on above results)and dosages - if anyone could advise?

Jazzw profile image
Jazzw

Well done for figuring out the possible B12 situation—good detective work! Means you’re already head of the game.

Personally, I wouldn’t take any supplements yet. Get the private blood testing done and see what comes back. It may be that you have more than one issue and starting to supplement before seeing the results of the blood test might skew the results—for example, it’s possible it isn’t hypothyroidism causing B12 deficiency (although that’s the most likely scenario!). It could be that you have Pernicious Anaemia as well, which would need further tests from your doctor to diagnose.

It does take a while for levothyroxine to build up to a level that starts making a difference and if you’ve been hypothyroid for a while (quite likely!) it might take a little longer, together with a dosage increase in due course.

Sal777 profile image
Sal777 in reply to Jazzw

Thanks for your advice, I’ll hold off on the supplements for now then. Just want these awful symptoms to improve as we all do. I’ll wait for the next blood test results and request GP test for pernicious anaemia… going to have to learn to be patient!

SlowDragon profile image
SlowDragonAdministrator

You need to get vitamin D tested

GP should….but frequently reluctant to do so

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Sal777 profile image
Sal777 in reply to SlowDragon

Thanks, I’ll get vit D tested too! 😊

Hi there - I can’t add any advice to the information you already have here, but I can say from experience that it can take a long time to achieve the improvements you are looking for when starting medication. It has more than likely taken months and months for your symptoms to reach a level which has led to diagnosis of hypothyroidism and by the same token, optimal positive change will not be instant. I was first diagnosed 20 years ago and it took two years for symptoms to stabilise. You are in a better place than I was then because you are already actively informed and taking steps to take care of yourself. (I wasn’t and wish I had been.)

Earlier this year, my medication was changed and it has taken a full 6 months to really begin to feel the benefits of this.

Attaining optimum levels of medication is not an exact science, and you will learn to recognise and trust how you react to changes, and what things you can do to help yourself to live with being hypothyroid. You are already doing this by obtaining and understanding your blood testing results - allowing for the time element for change to be effective is also an integral step to feeling well. This can be the hardest part of all (for me)! If only they could put patience in a pill😂

Wishing you the very best. Xx

waveylines profile image
waveylines

Hello Sal sorry to hear your feeling so ill. Not surprised though with those results....lol. Poor you. It will take time to get your thyroid meds optimal as the body has to be woken up slowly......so sorry.....no quick fix but in the end once optimal you should be symptom free.The labs have advised the GP to check B12 level because you are quite right your blood tests shows indications of potential PA. The PA Society recommend b12 should be over 500 for good health. The range is very wide so you may fall in range but many people have symptoms when their range gets in the 300s. Have a look at the b12d.org site they have an excellant symptom checker.

The Intrinsic Factor test misses 50% of people with PA so not very reliable. However if it comes back positive that is very reliable! Doing the b12 symptom checker is really important as if you have neurological symptoms eg tingling, numbness, blurred/double vision, tremors etc your GP should start you on alternate days of b12 injections straight away. They dont necessarily have to wait for test results, once they've drawn blood for a b12 test and intrinsic factor. However many local CCGs tie their hands and insist patients are referred on to a neurologist or haematologist to confirm.

I have hypothyroidism and B12d. Hypothyroidism came first for me but its not uncommon to come together.

Consider a three month trial of a gluten free diet. This made a massive difference for me.....and for some others......BUT not all. However Ive now been diagnosed as gluten intolerant by the nhs.

Please keep posting as you go through this. There are some really experienced knowledgeable people on here who can and will help you as you go through sorting this all out. Im afraid GPs are pretty ignorant around b12 as well as thyroid. Lol.....

SlowDragon profile image
SlowDragonAdministrator

So I've arranged a private blood screen (advanced well women blood test) with medichecks next week which provides all biomarkers for thyroid, vitamins, minerals, hormones and others also.

This test should include vitamin D

Test 6-8 weeks after any dose change or brand change in levothyroxine

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

BB001 profile image
BB001

With TSH of 55 you might have atrophic thyroiditis. I suggest you look at thyroidpatients.ca under atrophic thyroiditis. By the way my TSH was 170 when diagnosed, so don't worry about it, just use your TSH level as another piece of the jigsaw to work out what's wrong.

BB001 profile image
BB001

It may be that you're a poor converter of T4 to T3. Levothyroxine is T4. T4 has to be converted to T3 which is the active thyroid hormone.

You could do with a fT3 result to check your conversion rate of T4 to T3. To do this you need fT4 and fT3 from the same blood draw, in the same units, when not on thyroid medication, or only on T4.

The calculation is fT3 ÷fT4.

If you can't get the NHS to test fT3, this lab is an NHS lab that does private tests. Scroll right on the tests to see the thyroid one. TSH, fT4 and fT3 coats £29.

monitormyhealth.org.uk/#

This research discusses it.

'Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency'.

ncbi.nlm.nih.gov/pmc/articl...

Three distinct categories of conversion efficiency were defined (see Subjects and methods) as follows: poor converters <23 nmol/s, intermediate converters 23–29 nmol/s and good converters >29 nmol/s deiodinase activity.'

It is worth testing for coeliac disease. You need to eat gluten for at least 6 weeks before the blood test. It is possible to still be coeliac and show as negative on blood tests. Only definitive test is endoscopy.

Have you heard of Pernicious Anaemia? It is possible to have high blood B12 result and still be B12 anaemic.

pernicious-anaemia-society....

Ask your GP to do the thyroid antibody tests TPO and TGAb. A positive in either of these means you've got Hashimoto's hypothyroidism and your immune system is attacking your thyroid. Stopping eating gluten will help minimise this attack as well taking 200mcg selenium a day.

Sal777 profile image
Sal777

Thank you all for taking the time to share your knowledge and support, this site truly is a godsend! It’s been hard to know where to start when I’ve been healthy all my life and never needed any medication until menopause and now hypo diagnosis … I’ve never had to understand/interpret blood tests etc, it’s such a learning curve. I really appreciate all the guidance on this journey.

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