I'm trying not to panic but it's setting in....... - Thyroid UK

Thyroid UK
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I'm trying not to panic but it's setting in.......please I need a little reasurrance

Bendaisy2
Bendaisy2

Hi everyone, I went to my GP because I was totally exhausted, I tried to fight it mind over matter kind of thing and ended up not being able to get out of bed for 4 days.

I thought my thyroid might be low again GP sent me for full bloid works which I had on Tuesday. I received a letter yesterday requesting repeat bloods for iron studies, serum folate, B12, full blood count and renal profile and explanation as to why.

I have under active thyroid and early stages of CKD. I was perfectly fit and healthy 3 years ago and can't understand why things are going wrong with my body.

Has anyone experienced anything similar. I'm hoping GP is just being thorough but I feel so rough all the time.

Thank you in advance

17 Replies
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There is a direct interplay between kidney and thyroid. Thyroid dysfunction affects renal physiology and development; kidney disease can result in thyroid dysfunction; and disorders of the thyroid and kidney may co-exist with common etiological factors. Also, the treatment strategies of one of those disorders may affect those of the other. Given how the functioning of so many organs, glands and systems impacts on the other parts of us, it perhaps should be more of a surprise to us if we have only one disorder in isolation, rather than the reverse. So many of us find that with one issue, others come along. For instance, under- or poorly treated hypothyroidism can result in osteoporosis or cardiac problems. It's great though, that you are being tested so thoroughly, to rule out any possible causes of your symptoms, or identify early on, anything that needs treatment. When you have the results of your latest tests, post them (with ranges) in a new thread. Meanwhile do you have the results of the previous set of tests that resulted in this further testing being requested?

Thanks MaisieGray, when I was first diagnosed I didn't realise the impact it would have on my life. I have thought I had bipolar at one time and the early stages of dentist another time, now I realise its all symtoms of my thyroid letting me down.

There were no results in the letter just the request for further blood tests. I will call into the surgery and request both sets towards the end of the week.

SlowDragon
SlowDragonAdministrator

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

Night sweats can be low B12

Heavy periods are classic sign of being hypothyroid and lead to low ferritin

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

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

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

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Come back with new post once you have seen GP. ALWAYS get actual results and ranges on all tests

How much Levothyroxine are you currently taking?

Hi Slowdragon, Thank you for the information. I've been on levothyroxine for 3 years. I started on 25 and now take 50 one day and 75 the next......it's still a minefield for me.

I haven't actually had my results yet but will call into the surgery towards the end of the week to request both sets the do new post.

Thanks again

I have a very definite antipathy towards Drs who put patients on differential dosing with no thought to its possible effects; and if it were me, I'd be cutting the "extra" 25 mcg tablets in half to take a consistent 62.5 mcg every day.

SlowDragon
SlowDragonAdministrator
in reply to MaisieGray

More likely needs an increase in Levothyroxine dose as well.

Yes absolutely, I thought exactly the same, pending the new results. I was more expressing my empathy with Bendaisy2's situation and my frustration with Drs who come up with bizarre and probably groundless dosing regimes.

SlowDragon
SlowDragonAdministrator
in reply to MaisieGray

I do find it better to take exactly same dose every day....currently on 112mcg daily, so cutting 25mcg Mercury Pharma Levothyroxine in half, plus 100mcg Mercury Pharma Levothyroxine tablet

Easy to do, especially compared to cutting the T3 into 1/4's

Hi Maisie, hope no-one minds me jumping in here. I had understood that the whole week’s dose of levo could be taken in one go, so never thought twice about taking a different dose on some days. I am currently taking 75 mcg levo 5 days a week and 50 mcg the other 2 days, amounting to an average of 67.85 daily. Are you saying this isn’t a good idea? I have been increasing in tiny increments. My blood levels are fairly good on this dose though my conversion is a bit off. I’m working on that. It would seem a bit difficult I think to take the same dose each day and yet arrive at the same weekly total. Any comments would be appreciated.

Best wishes

Caroline

Doctors have forced some patients they distrust to take all their Levothyroxine in one go, and be witnessed doing so, according to a few case reports I've read. In each case the reports say how "perfect" the TSH is after a few weeks of doing this. I don't recall any measurements being done of Free T4, Free T3, Reverse T3. And I definitely don't recall anyone saying how well or ill the patient feels before, during, or after this change in dosing routine.

In a healthy body the thyroid will be creating TSH, T4, T3 and Reverse T3 all the time, in very small amounts, as appropriate. People who are hypothyroid usually take T4 once a day. Anyone on NDT or T3 may split dose. But nothing we do with dosing regimes ever comes close to what a normal thyroid does in the healthy body.

By insisting on weekly dosing for some people doctors are making the gulf between normal functioning and those patients absolutely vast.

The body's response to vast amounts of T4 all in one go is probably to convert lots of it to Reverse T3 and then fairly rapidly to excrete it. I wonder how the patient feels after a few days? They probably have no raw materials left for making T3 and would be in a desperately hypothyroid state. But the TSH, which responds more slowly to thyroid hormone changes than Free T4, Free T3 and Reverse T3, might be absolutely fine.

Hi humanbean

Thank you for replying to my post.

However, I wasn’t considering taking a once-a-week dose of levo myself. I was just saying that knowing that it had been proposed somewhere as a possibility, I hadn’t thought it would be a problem to take different amounts of levo on different days. Then MaisieGray and Slowdragon both mentioned cutting up tablets so as to take the same amount of levo each day; consequently I began to wonder if my way of dosing i.e. 75 mcg levo 5 days a week and 50 mcg twice a week was not a good idea. Should I somehow be working out how to take the same amount each day?

Thank you for your detailed explanation of the body’s response to a weekly dose of levo. That makes sense. The easiest thing for me to do would be to take 75 mcg every day but I don’t want to push my level of FT4 too high.

What would you do in my place?

My latest Medichecks blood test results on 67.85 mcg were as follows:

TSH 0.393 (0.27 - 4.20)

FT4 20.00 (12 - 22)

FT3 4.81 (3.10 - 6.80)

Thanks again for taking the time to reply.

Best wishes

Caroline

I wasn't suggesting that your dosing regime was a bad one for you, I was just complaining about the absurdities of doctors suggesting once a week dosing. I got the wrong end of the stick because I thought you might be considering it. :)

Thanks humanbean, your response was very interesting anyway.😊

SlowDragon
SlowDragonAdministrator
in reply to Bendaisy2

That's an extremely small dose of Levothyroxine

Dose should be increased slowly in 25mcg steps with blood retested 6-8 later after each dose increase. This continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

Low vitamin levels are RESULT of being under medicated and therefore still hypothyroid

When vitamins are too low we can't process thyroud hormones

Improving vitamins by regularly supplementing is very often necessary

Essential to test

Vitamin D, folate, ferritin and B12

You beat me to it! But sadly doctors under estimated the importance of low vitamins or don't even know about it. Bendaisy2 needs to go back to first principles and get vits sorted and then look into thyroid meds etc.

SlowDragon
SlowDragonAdministrator
in reply to silverfox7

It's madness, I know....even experienced thyroid specialists often only check for actual deficiencies, not seeming to realise that we need optimal levels, not just within range but bumping along the bottom

I'm always suspicious of ones that don't answer your questions as well! i've not experiences many other illnesses thankfully but I do think we get a rough ride!

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