Hypo-thyroid, normal thyroid tests results, but... - Thyroid UK

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Hypo-thyroid, normal thyroid tests results, but still feeling very tired...

assunta79 profile image
10 Replies

Hi,

I am new here, I am hoping to find some help interpreting my test results. I am a breastfeeding mom of a 10 month old baby girl. I have been taking levothyroxine since January 2015, first only 25 mg then was put on 50 mg during my pregnancy.

My TSH was initially borderline, 4.5 but taking a small dosage of levo eased my symptoms (extreme tiredness, joint pain, especially hands, weigh gain, brain fog, feeling cold, also I got pregnant while I hadn't been able to before)

I am having a period of great stress and low mood. I suddenly lost my mum 5 months ago, am renovating our house, trying to get back to my PhD. My partner has been having difficulties managing his type 1 diabetes and under a lot of stress. I have been insomniac since my mum's death and also my baby wakes me up a lot so not getting much sleep.

Sorry for the long preamble just wanted to give some background info.

Basically I have similar symptoms to when I first started taking levo: extreme tiredness, weight gain, brain fog, achy hands and joints) but as my test results are within the 'normal' range the gp advised me to try antidepressants rather than investigate thyroid further. I tried asking for T3 test but she said no, she would only test me for coeliac disease as I was recently tested for vitamins (20/5/2016).

I thought I'd post my tests results on here in case anyone has any advice as I am reluctant to take antidepressants.

these are my thyroid results from last week:

TSH 2.5

T4 17.3

these are my results from may 2016

TSH 1.6 (0.2- 5.0)

T4 19.3 (9.0 - 24)

Serum ferritin 23.7 ug/L (7-90)

Serum Vitamin B12 421 ng/L (150-900)

Serum Folate 12.1 ug/L (3.0-16)

Serum Sodium 141 mmol/L (133-146)

Serum Potassium 5.1 mol/L (3.5-5.5)

Serum Urea Level 5.1 mol/L (3.5-7.4)

Serum creatinine 76 umol/L (45-84)

GFR calculated abbreviated MDRD 75 mL/min/1.73m2

Vitamin D

25-Hydroxivitamin D2 level 4 nmol/L

25-Hydroxivitamin D3 level 66.8 nmol/L

Serum vitamin D 70.8 mol/L

Full Blood count

total white cell count 8.7 (4-11)

Haemoglobin estimation 130 g/L (115-165)

Red Blood Cell count 4.46 (3.80-5.50)

! Haematocrit 0.362 (0.370-0.470)

MCV 81 fl (80-98)

MCH 29.1 pg (27-33)

MCHC 359 g/L (320-365)

Platelet count 347 (150-400)

Neutrophil count 5.62 (1.80-7.50)

Lymphocyte count 2.16 (1 - 4)

Monocyte count 0.66 (0.20 - 1)

Eosin count 0.26 (0.00-0.40)

Basophil count 0.04 (0.00-0.10)

I am very grateful for any help

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10 Replies
Treepie profile image
Treepie

Hope more knowledgeable folk will comment so i will just mention two things.I think you need an increase in levo to get your TSH to 1 or below.

Your B12 is too low and needs to be at the top of the range even a bit higher : 1000. Take a good methylcobalamin and B complex to go with it and keep the B vits in balance.

assunta79 profile image
assunta79 in reply to Treepie

thank you for your advice Treepie really appreciate it

SlowDragon profile image
SlowDragonAdministrator

Once we are on Levo we usually need TSH around 1 to feel better

See thyroiduk.org.uk/tuk/ for more on that

Good standard treatment should retest levels 6-8 weeks after a dose increase. If TSH not dropped low enough, then further increases (in 25mcg steps) with retesting until TSH is about 1 and STAYS at that level.

levels of vitamin d, b12, folate and ferratin all need to be at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

Vitamin D - we usually need it at around 100 nmol/L - common for it to be low with thyroid issues

B12 - is quite low - better nearer top of range.

When taking B12 recommended we also take a good Vit B complex (eg Jarrows B Right)

That would also improve folate levels.

Only ever start one supplement at a time. Waiting at least 10 days before adding another

Also have you 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 impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

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

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

You do not need to have ANY obvious gut issues, to still have poor absorption or gluten intolerance

Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many of us take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron, Vit D, HRT or magnesium, these must be at least 4 hours away

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

hypothyroidmom.com/92-of-ha...

drgominak.com/vitamin-d-hor...

vitamindcouncil.org/tag/aut...

Your ferritin also needs improving.....others hopefully may advise

assunta79 profile image
assunta79 in reply to SlowDragon

Thank you Slowdragon, I am thinking of doing a private thyroid test to see if I have Hashimotos. When I did my bloods in May, and I was already feeling exhausted, I didn't ask for a print out and as the doctors said they were all normal, I actually stopped taking my breastfeeding vitamin complex (I was struggling remembering to take it and it seemed such a hassle) I now realise that was a big mistake!

luley profile image
luley

Tsh rising

T4 falling

Ferritin very very low

I bet your t3 is very low

You are breastfeeding so no way whatever should you even consider antidepressants

You need to eat liverbeven if its ground into minced beef for shepherds pie etc in order to easily raise ferritin

Without

Ferritin

Folate

B12

Being halfway in their ranges your body cannot convert the t4 in levothyroxine into the t3 every body cell needs to function

Sadly your doctor is rather ignorant

Best to stop stressing your body furthur with breastfeeding though

assunta79 profile image
assunta79 in reply to luley

Hi Luley, thank you so much for your reply. I didn't realise that even though in the normal range it might be significant that the TSH and T4 levels are changing. Unfortunately I fear I would have to go up to TSH 5 for the doctor to think I needed more levo.

It's interesting because while pregnant, I was referred to the hospital and they were very serious about keeping my TSH low, at least under 2 they said, because of how my thyroid would affect pregnancy. But its all different now I'm not pregnant! I don't understand why this doctor was so keen to push me onto antidepressants but wouldn't consider upping my levo.

I am trying to wean my baby from breastmilk slowly. It's not easy in the past couple of weeks as she seems to want more than ever especially at night! hopefully a temporary situation, she is eating more and more solids.

Regarding the liver, I have never been able to eat it but I love pate, do you think liver pate would have the same effect?

shaws profile image
shawsAdministrator in reply to assunta79

You will probably be more knowledgeable than the doctor you are seeing that you are now on a helpline. Tell your doctor you need an increase to bring your TSH 1 or below and that you are a member of Healthunlocked Thyroiduk.org.uk and you are on the forum for information and advice on how to improve your thyroid hormones and recover your health.

You have been advised that your TSH should be at least 1 or lower and the T4, T3, Free T4 and Free T3 have to be towards the upper part of the range not the middle or bottom. To know if you have hashimotos the doctor should test for thyroid antibodies.

This is informative re raising your iron level and it does include pate.

uhs.nhs.uk/Media/Controlled...

Babies love the comfort of Mum and breastfeeding,and as you say as she eats more solids you can slowly reduce the time to around bedtime only.

If the doctor suggest antidepressants tell her that some T3 should be used instead as it is the active hormone required in all of our receptor cells and the brain contains the most so you'd like to know your Free T3 to make sure you have sufficient in your body it should be in the upper part not lower..

shaws profile image
shawsAdministrator

Welcome to our forum Assunta79 plus your little baby.

You certainly must be struggling with a dose so low as 50mcg of levo. You need an increase in levothyroxine to bring your TSH below 1. You are under immense stress, even if you weren't unwell, first with the bereavement of your Mum, being unwell yourself and poorly medicated. A new baby and studying for your PHd. plus your husband's illhealth too. No wonder you're feeling poorly.

Tick off your symptoms on this list:-

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

You are very undermedicated with a dose of only 50mcg. Your TSH is too high for someone with hypo (the ranges are only for diagnosing initially).

The usual doses of thyroid hormones before the blood tests were introduced along with levo were between 200 and 400mcg of NDT. I shall give you an archived link as Dr Lowe has since died but he was a humane doctor and brilliant as well. Some links within may not work as it is archived but there lots of great info and topics at the top of the page which will be helpful to you.

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

If you were optimally medicated you would not have any of these symptoms.

Your blood test for thyroid hormones should be the earliest possible and fasting. You can drink water. Allow 24 hours between your last dose of levo and the test and take it afterwards. This helps keep TSH at its highest as that's all the doctors seem to take any notice of and they will offer a myriad of other medications for the clinical symptoms rather than a decent dose of thyroid hormones.

Always take supplements and other medications well away from thyroid hormones (levo in your case).

assunta79 profile image
assunta79 in reply to shaws

Thank you so much Shaws for all your advice. I don't really know how to convince the doctors I need more levothyroxine. I see a different doctor each time, they have a lot of temporary staff at the surgery, so maybe it's a question of luck! I told them what happened in my life so they tend to think the causes of my problems are grief and stress rather than lacking in nutrients and thyroid.

Angel_of_the_North profile image
Angel_of_the_North in reply to assunta79

So don't tell them those things! They get more money for prescribing anti-depressants than thyroid meds. No way do you want a baby ingesting anti-depressants through your milk.

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