Newly diagnosed and seeking advice- thank you

Hi,

I was diagnosed as having an underactive thyroid about 5 weeks ago, after feeling unwell for some time- aches, fatigue, weight gain, chronic constipation etc. I've recently moved and registered with my local GP, and had a blood test-

My blood results are below:

Serum Free T4: 12.2 (12-22)

Serum TSH:  14.13 (0.27-4.2)

Serum Cholesterol: 5.5 <5.2

Serum creatinine : 75 (44-80)

Serum Vit B12 352 (180-800)

Serum Ferritin 221 (25-300)

Serum Folate 5.9 (3-20)

Full blood count

Total white cell- 2.5 (4.0-11)

Neutrophil count 1 (2-7.5)

Lymphocyte 1.3(1.5-4.0)

Monocyte 0.2 (0.2-0.8)

When I saw my Dr, he said I had an underactive thyroid and would need medication for life. He gave me a prescription  and gave me a blood test form and told me to make an appointment for 3 months and sent me on my way. He also said my WBC was low and we'd retest it in 2 weeks.  I was in shock. I filled my prescription- which was for two months!! Supply of Levothyroxine 50mig. When I saw the nurse to check my WBC two weeks later, she said the Dr had made a mistake and I had to go back before the meds ran out.

Two weeks later I had a call from the receptionist saying the Dr had looked at my new WBC results and I didn't need to worry as they had imroved, so he didn't need to see me. It was only after reading on this website that I realised that I could obtain my results, so I did. My second WBC results are as follows-

Total white blood count 3 (4-11)

Neutrophil count 1.3 (2-7.5)

Lymphocyte count 1.4 (1.5-4.00) so some improvement but not within normal, but the Dr isn't concerned?.

I saw my old Dr before moving in 2013 and was told at the time my results were normal. I recently obtained those results and they are below:

2013 results

Serum free T4 11.9 (11-23)

Serum TSH 5.25 (0.35-5.5)

Total white cell count 3.1 (3.8-11)

MCH 33.2 (27-31)

Neutrophil 1.5 (2-8)

I was told after the above blood test in 2013 that my results were normal- but I never saw those results until recently. But they are not in normal range, and this wasn't investigated or considered an issue?

I had carpal tunnel surgery on my right hand in 2012, but never the left as I felt surgery mad no difference, in fact I had more pain in my right thumb than ever. Is there a link between the thyroid function and carpal tunnel?

So I have little confidence in my GP practice and am very nervous about going back- they even lost my prescription exception form and I still havent got my card for free prescriptions!

However, I'm feeling worse than ever , despite the Levothyroxine 50 for 5 weeks, and just want some answers so I can help myself to feel better.

My Dr didn't seem interested in why my thyroid isn't working or why I have a LWB count. So can I ask him to do further tests, and will he. For example, how do I find out if I have Hashimoto's- what tests can I ask for? And my mother had severe rheumatoid arthritis- and my joints ache so much. Is there a test for that? And I also have very tender pressure points on my body and have had for over a year- and I wondered whether that is connected- above the elbow, either side of sternum, back of neck and shoulders.

Also at my next test- should I ask for T3 and Vit D?

This all feels so overwhelming and any comments and support would be most welcome.

Thank you so much. 

ChrisRP

I was not tested for T3 or Vitamin D or antibodies

10 Replies

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  • Welcome to the forum, ChrisRP.

    TSH is a pituitary hormone which responds to thyroid hormone levels T4 and T3.  T4 is a pre-hormone which converts via the thyroid gland and major organs to T3 which is the active hormone and it is low T3 which makes us feel hypothyroid symptoms.

    50mcg is a starting dose.  3 months is too long to wait for a dose increase.  Try to get a test 8 weeks after starting Levothyroxine.  You are likely to need several dose increases, usually in 25mcg increments every 6-8 weeks, until TSH is 1.0 or lower, with FT4 in the upper range.

    Check your bloods form to see if thyroid peroxidase antibody (TPOab) testing is included.  If not, ask your GP to order it next time you have an appointment.  90% of hypothyroidism is due to autoimmune thyroid antibodies (Hashimoto's).  The autoimmune condition isn't treated, the resulting low thyroid is replaced with Levothyroxine.

    Most people will find symptoms resolve after their TSH drops to around 1.0 with FT4 in the upper range but symptoms can lag a couple of months behind good biochemistry.

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    When you book your next thyroid test arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

    Cholesterol rises when thyroid levels are low and usually drops once you are optimally medicated.

    This link explains FBC evaluations and reasons for abnormal results labtestsonline.org/understa...

    PA Society recommend that B12 1,000 is optimal.  If you want to raise your low B12 level supplement 1,000mcg methylcobalamin and take a B Complex vitamin to raise folate.

    Carpal tunnel syndrome is a very common hypothyroid symptom.

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

    Your joints are probably aching so much due to your low thyroid hormone but it is a good idea to ask for vitamin D to be tested as low vitD causes musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

    The tender pressure points are almost certainly due to low thyroid symptoms and should improve after you are optimally medicated. 

    Contact your surgery two or three weeks before you run out of Levothyroxine to check whether repeat prescriptions have been added to your record and whether you can order by telephone, online or in person.  If repeat prescriptions aren't set up you should make an appointment to see your GP at least a week before you run out.

    If the medical exemption card doesn't arrive in the next week or two it may be worth chasing it up.  In the meantime ask your pharmacist for reclaim form and receipt for any prescriptions you pay for.

    ________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you so much, Clutter, for your detailed reply. And for all the links, which I'll have a good look at. I was worried about going to see my Doctor early, when he said I should go back after 3 months. I wasn't tested for any antibodies, so I'll ask for that to be done. Although when I asked him why my thyroid wasn't working, he simply shrugged his shoulders and didn't offer any suggestions as to how to find out. On the whole , he just wanted me out of the door - or so it felt.

    Can a Dr refuse to test for the extra things- antibodies, Vit D? And could I also ask about any test that can be done for rheumatoid arthritis?

    Thanks again

  • ChrisRP,

    If a GP doesn't consider there is clinical need for tests he won't order them.  Certainly ask about TPOab, vitD and a rheumatoid factor blood test.  My GP did RF a few years ago to 'allay my fears'.

  • Many thanks. I'll definitely ask.

  • Hi ChrisRP.

    Just adding that when told I was Hypothyroid several years ago,  my white cells and neutrophil were both under range. I asked for my first ever blood printout and oddly saw no thyroid blood results on it, not sure if they were even done ?  

    On my following printouts along with FT4 and TSH added in, my white cells and neutrophil blood results showed improvement (once Levothyroxine was given and the Levo medication upped, several times.)  

    Around a year later both white cells and neutrophils had returned to 'within range'  (Normal,)  same time as I started to feel better. 

    A male relative also had under range white cells and neutrophil results, high cholesterol and  Low Thyroid, (Hypothyroidism,) but unfortunately was never diagnosed as Hypothyroid, though sadly prescribed a statin. (remembering the High cholesterol/low thyroid link.)

    Not sure what the connection is, but 'some' patients can present with low or under range white cells and neutophil alongside low thyroid.  

  • Thanks for that Coastwalker.

    Hopefully things will improve once I'm on optimal medication. It does feel like an uphill battle with a Dr who didn't want to see me for 3 months after my initial diagnosis, although he only gave me a two month prescription for Levo 50. And it's not on repeat prescription. I really didn't understand what was going on until I found this website.

    Thanks for your reply.

    ChrisRP

  • How ridiculous to give you two months supply and an appointment in 3 months time Chriss RP ???  

    Levo 50 is usually a starter dose. I would be phoning up and asking the receptionist for a repeat prescription?  you should not be stopping thyroid medication, I was told my thyroid medication would be for life.                                

    I  started on Levo 50 and had to keep pushing my Doctor to 'up' my Levothyroxine dose, 'cos after a while of feeling normal, my body would start to feel worse again, the last time my Levo was upped, Doctor had to ask a higher authority if it was OK to do so. So when I knew I needed a slightly higher dose yet again, I decided to look into buying my own NDT (Natural Dessicated Pigs Thyroid) and now self supplement to what my body tells me I need. I felt miles better once on NDT and still feel mostly good.    

  • I know Coastwalker. When I saw my GP, he said i would be on medication for life - but he said to collect my prescription from the Chemist, and couldn't get me out of the door fast enough. He gave me a blood test form for reception -to book the blood test - and it said book test for 3 months - thyroid function test only. So no test for anything else. And   It was only when I filled the prescription, the Chemist said the Levo  was for 2 months - and it wasn't on repeat prescription. I was utterly confused.

    After reading the posts here, i'm going to phone for an appointment tomorrow to see the GP again - as I've only got 10 days of tablets left. But I have to confess, I'm pretty nervous - and have felt very anxious about it today. I really want to understand why my thyroid is under active, and what  is going on with my body. So I'm going to ask for the other tests Clutter suggested.

    Reading comments on this website has opened my eyes to have difficult it can be for many to get their GP on their side. 

    I'm really grateful to have found this forum, and to have had your and Clutter's help

    Wish me luck for tomorrow!

    ChrisRP

  • Wishing you good luck for today ChrisRP, yes do ask for the bloods Clutter mentioned. Have them written down, I always make a note down the bottom of my list 'ask for a blood printout + ranges, then I don't forget to ask. 

    Take a deep breath before going in to your Doctor and remember it is your health, so don't let  Dr. push you out of the door so quick, also point out that your Doctor said medication was for life and that you were confused you were only prescribed 2 months supply of Levo.

    We do have to take control of our own health issues I have learnt, wish I'd known it all sooner. TUK has opened my eyes too. :)

      

  • Will do

    Thanks :-)

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