can anyone help, hypothyroidism, fatique, dizzy... - Thyroid UK

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can anyone help, hypothyroidism, fatique, dizzy spells ect

crowh profile image
12 Replies

Hi I've been on Thyroxine 100mcg for 16months. over the past 4 weeks I have been suffering from chronic fatigue, dizzy spells, breathlessness, my nail beds are white, pain in legs and just generally feel terrible. My FBC is all in range and also my Thyroid function. My GP sent me for an ECG and chest x-ray yesterday which I'm convinced will be fine. As my FBC were fine she refused to complete any tests re iron deficiency as "your not anaemic". I have been looking into this and looking at some posts it seems that B12 deficiency or panaceas anaemia doesn't always reduce you red blood cell count. (family history of B12 panaceas anaemia)I have contacted the GP and requested B12, vit D and tests for Anaemia but have been told I will have to speak to another GP. I'm fed up ! I'm sleeping when not at work which isn't good as I have two small children!

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crowh
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shaws profile image
shawsAdministrator

Welcome to our forum, and later on if you can put some information on your Profile, i.e. when diagnosed, with what etc.

If you've had a recent test, get a print-out from the surgery, always do this from now on and make sure the ranges are stated - for your own records. Or to post if you have a query.

I would be reluctant to believe that your Thyroid Function is 'optimal'. It may be in range but no good to you if you feel awful.

Do you have your blood tests for your thyroid hormones at the very earliest possible, fasting (you can drink water) and do you allow a gap of 24 hours between your last dose and the test and take it afterwards. This helps keep the TSH at it's highest as GPs are apt to reduce dose if TSH is low. We like it to be low and it usually makes us feel better.

If you haven't maybe request a new blood test from GP saying you've had information and advice from the NHS Choices for advice/help re dysfunctions of the thyroid gland.

Most times they wont do all of the suggestions but we do have recommended labs which will do all of them. I shall give you a link. Both Medichecks and Blue Horizon do postal pin-prick tests and if you decide to, make sure you are well hydrated a few days before.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

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

GP should test B12, Vit D, iron, ferritin and folate. I don't think a FBC can rule out iron deficiency but others more experienced than me will respond. If you have P.A. in the family, definitely you need confirmation or not. She should have tested the 'intrinsic factor'. P.A. is also a very serious condition as is hypo but they don't seem to realise it.

All of our vitamins/minerals are usually deficient and need to be optimum particular Vit D and B12.

Get a print-out with the results and ranges and put them on a new post.

Also when you get your results for P.A., post them on the Pernicious Anaemia Society's forum on this website too.

crowh profile image
crowh in reply toshaws

Hi, my recent bloods were non fasting and where taken about 10am I take my thyroxine at 6.30-7am. I will get a print out of my blood results and post them tonight. I have to ring GP tomorrow so will ask for further test. thank you for your response.

shaws profile image
shawsAdministrator in reply tocrowh

Unfortunately, due to you taking your thyroid hormones before your blood tests, your results will be skewed.

It is advised that 24 hours gap between hormones and test so you should have waited until after your test to take your thyroid hormones. I know that sometimes we are in 'automatic pilot' but the night before a test move your levo or whatever thyroid hormones you take to another place so that mistakes don't occur next morning.

crowh profile image
crowh in reply toshaws

I will next time. I have never been told to stop taking it before hand which after more thought would be the sensible thing to do!

crabapple profile image
crabapple in reply tocrowh

I stick a post-it on mine the night before. Learnt the hard way:)

crowh profile image
crowh in reply tocrowh

C-Reactive Protein CRP(0 - 5)mg/L- - - 0.7- -

Full Blood Count

Basophils***(0 - 0.2) 10 9/L- 0.07- - - -

Eosinophils***(0.04 - 0.4) 10 9/L- 0.15- - - -

Haematocrit***(0.37 - 0.48) L/L- 0.404- - - -

Haemoglobin***(115 - 165) G/L- 133- - - -

Lymphocytes***(1.0 - 4.5) 10 9/L- 1.49- - - -

MCH***(27 - 32) pg- 28.2- - - -

MCHC***(320 - 370) g/L- 329- - - -

Mean cell volume***(80 - 102) fL- 85.8- - - -

Monocytes***(0.2 - 1.2) 10 9/L- 0.57- - - -

Neutrophils***(1.8 - 7.5) 10 9/L- 4.15- - - -

NRBC***10 9/l- 0.00- - - -

Platelets***(150 - 450) 10 9/L- 293- - - -

Red cell count***(3.80 - 5.80) 10 12/L- 4.71- - - -

Red Cell Distribution Width***(12 - 15) %- 13.6- - - -

White cell count***(4.0 - 11.0) 10 9/L- 6.43- - - - Thyroid Stim. Hormone (TSH)

TSH(0.4 - 4.00) mIU/L3.74-

humanbean profile image
humanbean

Looking at your full blood count results your doctor is actually right that you aren't showing as anaemic on that test. However, iron deficiency pushes some blood test results one way, and B12 deficiency pushes some blood test results the opposite way. For example, ferritin (iron stores), serum iron and MCV go in opposite directions. Put both iron and B12 deficiency in the same body and you could end up with blood test results that look very normal.

irondisorders.org/Websites/...

You would need testing for nutrients and an iron panel to be sure they weren't relevant.

---

Just googling "nail beds are white" told me that there are some very serious causes for this problem :

nhs.uk/conditions/nail-abno...

and several of those causes could cause the symptoms you are having. You could print that page out and take it to an appointment. Your doctor can't just ignore it because it comes from the NHS Choices website.

---

And finally, if you've been having thyroid function tests at random times during the day after taking your thyroid meds in the morning, then your results will be all over the place and they may be showing misleading results.

The advice we usually give on this forum for blood tests is :

a) Fast overnight (apart from water which can and should be drunk freely) and delay breakfast and morning tea/coffee until after blood has been taken.

b) If patient is taking Levothyroxine (T4), take the last dose before the test 24 hours before the blood draw.

c) If patient is taking Liothyronine (T3), take the last dose before the test 12 hours before the blood draw.

d) If patient is taking any brand of NDT (Natural Dessicated Thyroid ) such as Armour or Thyroid-S or any thyroid supplement containing animal thyroid, take the last dose before the test 12 hours before the blood draw.

e) Arrange the blood draw for as early in the morning as possible, and by 9am at the very latest.

f) Always follow the same preparation for every blood test to maximise comparability between tests.

humanbean profile image
humanbean

I've only just noticed the TSH test result at the bottom of your list of results.

TSH (0.4 - 4.00) mIU/L 3.74

You are under-medicated to have a TSH result that high. For hypothyroid people to feel well most people on Levo-only need to have a TSH which is low in range. 0.4 - 1 is often quoted.

Your doctor doesn't look like someone who will help you with your thyroid. If you could find someone else who is more compassionate then you might get a raise in dose.

If you follow the suggestions given above for how to do thyroid function tests and get the "best" results, then you might get a TSH which is over range and hence get some ammunition for getting a raise in dose.

Something you may find interesting...

web.archive.org/web/2004060...

It shows TSH distribution in healthy women. Read the blurb below the graph for more info on what it shows.

The data for the graph came from this paper :

eje-online.org/content/143/...

As far as I'm concerned the most important part of the paper is the right hand half of Table 3 which shows the median TSH figures (amongst others) for healthy males and females with no known thyroid disease, for different age groups.

Any doctor keeping their patients' TSH in the middle or upper half of the reference range should read these links. They are keeping their patients sick.

crowh profile image
crowh in reply tohumanbean

I have contacted doctor this morning and have been refused a further blood test. They do not ask people to omit men's or fast!, I am seeing the nurse practitioner on Monday but I'm not sure if it's worth it now.

crowh profile image
crowh in reply tocrowh

Medication

humanbean profile image
humanbean in reply tocrowh

The reason that doctors don't mention the ideal conditions for testing is that they seem to be unaware that time of day affects TSH, nor do they seem to care that having taken your Levo not long before a blood test will effectively mean a blood test is measuring what is in the Levo, not an "average" level of thyroid hormone in your blood.

Let's imagine that your Free T4 was measured on the hour, every hour, for 24 hours, while you ate and drank and took your meds as usual. Your Free T4 might vary from 12 pmol/L up to 18pmol/L, perhaps, with a reference range of 12 - 22.

Obviously the lowest measurement is right at the bottom of the reference range, while the top measurement is in the upper half of the reference range. Which of these results is most valid in your opinion?

I'm not actually going to argue which is the most valid, because I could play devil's advocate and argue several ways. But as patients trying to live within a system that doesn't care how we feel (symptoms don't count, blood tests do), then we should make the system work for us in the only way we can. And so we should do what we can to get the lowest Free T4 and Free T3, and highest TSH possible, because doing so is for our own benefit.

crowh profile image
crowh

I have an appointment with the nurse practitioner tonight as continue to feel awful. I have just looked again at my TSH results January they were 2.56 now 3.74 ((0.4 - 4.00))? should this be happening when on Levo?

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