Hypo-Levo

[Skeog]

Hi all following on from my post a few months ago, I revisited my GP and had another blood test done. In a strange way I have to say I’m disappointed that my bloods have supposedly come back normal. I was rather hoping that something would be found as I genuinely feel like a zombie. I have swollen feet ,zero energy and cannot shift any weight. I’m on Levo 175mg and according to my GP I am at the right level. Can anyone with more experience perhaps share their thoughts as it’s getting me down, and I can’t really see the benefit of taking Levo.

[greygoose]

Well, I wouldn't call them 'normal'. Your TSH is too high for someone on thyroid hormone replacement, and your FT4 is too low. Your FT3 is probably low, too. Basically, you are under-medicated.

Your B12 could be a bit higher, too.

[Skeog in reply to greygoose]

Thank you always find your replies helpful, I’m off soon to see a specialist, gotta get this sorted its wearing me down

[greygoose in reply to Skeog]

You're welcome. Good luck!

[Marz]

How do you take your levo ? Is it possible you are not absorbing it well ? You really need to know the T3 reading.

[Skeog in reply to Marz]

Take it first thing in the morning cannot see the T3 results in the blood test

[Marz in reply to Skeog]

FT3 rarely tested on NHS. Link to Private Testing on your post/thread of a few months ago. The T3 test is the most important test as it is the ACTIVE hormone - needed in every cell of your body ...

[greygoose in reply to Skeog]

Do you wait at least an hour before eating? Do you take any other medications or supplements at the same time?

[Skeog in reply to greygoose]

Yes and no to meds

[greygoose in reply to Skeog]

Good.

[shaws Administrator]

The more we read posts on the forum, the more we realise how poorly trained are the medical professionals.

Once diagnosed with hypothyroidism the aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges. Your TSH is too high and Free T4e not high enough so I guess your Free T3 will be the same.

Levothyroxine is T4, T4 is an inactive hormone and has to convert to the Active thyroid hromone which is T3. T3 is required in our millions of T3 receptor cells in order for our metabolism to work efficiently/effectively and brain and heart have the most cells.

Blood tests for thyroid hormones always have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take it afterwards. This helps keep your TSH at its highest (so that you get an increase in levo) and both Frees should also be in the upper part of the ranges.

Levothyroxine should be taken, usually when we get up with one full glass of water and wait an hour before eating. Some prefer a bedtime dose, in that case stomach has to be empty and around 3 hours gap between food and levothyroxine.

The majority of doctors seem to believe that once the TSH is somewhere in the range that we're on a sufficient dose but this isn't the case.

Maybe give your doctor a print-out of the following:-

healthunlocked.com/thyroidu....

B12 is lowish and you need to supplement with B12 methylcobalamin sublingual tablets so that B12 is nearer the upper part of the ranges. Vit D, iron, ferritin and folate should be optimum too.

Cholesterol levels rise when hypo, but will reduce with increasing doses of levothyroxine.

Many doctors don't know any clinical symptoms so are apt to prescribe for a symptom rather than increase dose of levo until it is 1 or lower and yours is nearly 3 so increases are due.

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

The aim of thyroid hormone replacements is to relieve all clinical symptoms.

[Hidden in reply to shaws]

Shaw, I have no thyroid would you advise that I not take my medication for entire day before I get my bloodwork done?

I'm on 2 grain armour thyroid

[shaws Administrator in reply to Hidden]

If on NDT, you can leave 12 hours gap between last dose which I would assume would be a bedtime dose and the a.m. test ?

I must also state I'm not medically qualified but like the majority on this forum we've learned by our experiences being hypothyroid and (in my case) diagnosing myself.

[Hidden in reply to shaws]

Shaw, I currently do take my last Armour 12-13 hour before blood test but every single time the results come back that I'm hyper although I know I'm not and recently ive seen a lot of post telling people don't take your meds 24 hours before blood test. Im wondering if I dont taking my meds for entire day would this give a better view as to what is going On or cause me issues since I'm thyroidless?

Sorry I did not mean to hijack this post.

[shaws Administrator in reply to Hidden]

The fact is that the blood tests were invented for levothyroxine alone, i.e. T4. Therefore if we add in T3 or take NDT the results cannot and do not correlate.

When on NDT - the blood tests are secondary to our clinical symptoms and it should always be the symptoms and relief of that is the priority.

Excerpt:

A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary

hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the

blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have persisting hypothyroid symptoms, and no hyperthyroid symptoms, ask your physician to increase the dose to see if your symptoms will

improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose. They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done

prior to your daily dose, as recommended by professional guidelines. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy. In all cases, your physician must treat you according to your signs and symptoms first, and the free T4 and free T3 levels second.

(I have embolden the sentence).

The following doctor was also an Adviser to TUK. He only took one blood test for the initial diagnosis and took none afterwards. He also would only prescribe NDT or T3 alone for resistant patients. He'd never prescribe levothyroxine.

It was all about symptom relief and there are other topics at the top of the following link:-

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

[shaws Administrator in reply to Hidden]

They should not try to 'fit us into a range'. It is symptoms, symptoms, symptoms. i.e. TSH is highest early a.m. and drops throughout the day, so if we have a 5 p.m. test it will not be the same as an a.m. one.

[Hidden in reply to shaws]

Doctors seem to only want to fit everyone into a lab range and not your individual issues or needs. I might try going all day without my meds and take the test the next morning just to see if this gives different lab outcome. I just don't want backlash health wise.

I do get confused because I read other thyroidless people who are half my size (weight wise) take more medication (armour thyroid) and still can't obtain stable results and here I am constantly battling to NOT have my medication reduced because my numbers (all) of them are bottomed out on the lab reference range and every Endo thinks I'm hyper although I can not stop the weight gain I can go almost all day without eating because I'm never hungry and I can sleep almost all day. I do crave sugar ever since I had thyroidectomy and can not figure out why, I'm not pre or diabetic.

[shaws Administrator in reply to Hidden]

It is frustrating for us when it appears that doctors/endos are not listening and I think it's because they aren't really aware of how bad we feel if our thyroid gland isn't provide the relief we need.

However the following link might be helpful and it is finding a way through the maze and finding the solution:-

stopthethyroidmadness.com/h...

[Hidden in reply to shaws]

WOW Shaws.....Amazing transformation for those people. After I read mostly all of those amazing stories It confirms what I've been saying to my Endos for a long time that people who weigh less then me are on a higher dose of Armour Thyroid and at one point higher doses of synthyroid and cytomel. I understand we are all different and one person's needs medication wise might be different then mine it still seems I'm on too low of a dose when you consider I rely on estrogen and I use high risk drugs for a bad immune system and now no thyroid....I often wonder if I will ever get a doctor who will give my life back.

[Skeog]

Thank you for your reply I’m now off to see a specialist as I k ow I am not right, just very frustrating

[Marz in reply to Skeog]

What are you hoping for from the Endocrinologist ?

[Skeog in reply to Marz]

As my doctor said, She is not a specialist in this field, hopefully the endo will look at my meds and adjust accordingly. I am gauging this based on the fact that after 12 months of Levo at 175mg I feel no better at all. I would have thought I would have at least felt some benefit

[SlowDragon Administrator in reply to Skeog]

Your results show you need 25mcg dose increase in Levothyroxine

TSH is too high, should be between 0.4-1.5

FT4 too low, should be near top of range

No FT3 tested

You need vitamin D, folate and ferritin tested too

TPO antibodies are negative, but no TG antibodies tested. (NHS refuses to test TG antibodies if TPO are negative. )

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

New NHS England Liothyronine guidelines November 2018. Clearly states on pages 8 & 12 that dose of Levothyroxine is to increase until TSH is between 0.4 and 1-5. Plus lists vitamins to test

sps.nhs.uk/wp-content/uploa...

Ask GP for 25mcg dose increase in Levothyroxine

Plus to test vitamin D, folate and ferritin

Bloods should be retested 6-8 weeks after each dose increase

Are you on strictly gluten free diet? Or tried it?

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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

Come back with new post once you have more results and ranges

Lastly

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

[Marz in reply to SlowDragon]

healthunlocked.com/thyroidu...

[Marz in reply to Skeog]

I can see you are quite new to this Forum. Over the years I have read so many posts about disappointing visits to Endocrinologists - who routinely specialise in diabetes and know so very little about the thyroid. It seems they do not even know that an under-treated or untreated thyroid may lead to diabetes. All part of the Endocrine system after all

Have you considered having Private Testing done before you go to see this Specialist ? - so you can check out the results here on the Forum and have a plan in place for discussion. Otherwise you will be at the mercy of the NHS testing yet again and be treated by someone who has both hands tied by Guidelines and will not treat according to symptoms - but by the TSH Test - which as you know will tell you so little.

I think you will be in a better place following the advice here - so many of us take care of ourselves and there are some very knowledgeable members here to guide you.

Your 175mcg may not be working if your other vitamins are low in range - VitD - Folate - Ferritin. They too could be the cause of some of your symptoms.

Do you have any gut issues - are you taking any other meds or supplements in addition to your levo ? Only asking as this can sometimes affect the absorption of the Levothyroxine you are taking.

[Skeog in reply to Marz]

Thanks for the reply I now have a referral letter from the GP so will be seeing a private endo (not NHS) I don’t take any other tablet and don’t really have any gut issues, I have been checked and I am not even pre diabetic according to my GP

[Marz in reply to Skeog]

I have not mentioned you being pre-diabetic - good that you are not ! I was only explaining that many Endos specialise in diabetes NOT Thyroid - so do research your Private Endo on-line with care.

[SlowDragon Administrator in reply to Skeog]

Many of us have absolutely no gut symptoms, but turn out to have significant vitamin deficiencies and/or food intolerances

Tina and time again when people come to the forum, and get full testing they find poor vitamin levels

Absolutely Essential to test vitamin D, folate, ferritin and TG antibodies and FT3

NHS refuses to test TG antibodies if TPO are negative. It's more unusual, but not that rare to only have high TG antibodies and low TPO antibodies

healthline.com/health/antit...

You can also have Hashimoto's and negative antibodies

Low vitamin D is extremely common when hypothyroid

We always recommend full Thyroid and vitamin testing BEFORE seeing any private Thyroid specialist

Otherwise the first Consultation is waste of time and money. Plus if testing is done via private hospital consultant it's likely to cost considerably more than Medichecks or Blue Horizon

Also unlikely to be able to choose to correct time of blood test

Very important to do test as early as possible in morning and fasting and no Levothyroxine in the 24 hours prior to test. Take daily dose immediately after blood draw

How and when do you take your Levothyroxine?

Is it always the same brand?

Is this endocrinologist from the Thyroid UK list of recommended thyroid specialists?

As Marz says, many many endocrinologists are only Diabetes specialist.

As Professor Toft said at the recent excellent talk he gave in London......he doesn't know much about Diabetes, as he's a thyroid specialist. So not surprised that Diabetes endocrinologists know little about how to treat thyroid patients

Unfortunately there are very, very few dedicated Thyroid specialists, despite Levothyroxine being the 2nd most common drug prescribed in UK and almost 2 million patients on Levothyroxine, many of whom are very poorly managed by their GP's.

[MaisieGray in reply to Skeog]

"I now have a referral letter from the GP so will be seeing a private endo (not NHS)" - to clarify, we don't need a GP's authorisation or referral in order to see a private GP or Consultant. We can simply contact them direct.

[Aurealis in reply to MaisieGray]

Thank you, I didn’t know that

[MaisieGray in reply to Aurealis]

The NHS website states:

"Do I need a GP referral for private treatment?

No. You can get private treatment from a consultant or specialist without being referred by your GP."

It might be the case that someone's health insurer requires a referral (presumably to stop customers randomly asking for expensive second opinions ...), or that an individual private Dr does ask for one; but as a general rule, it's not required.

[penny]

I’m sure that you have read a lot of posts on this forum and noticed that endocrinologists can be as ignorant of thyroid issues as GPs. Do factor in the possibility that a visit to an endocrinologist may not give you the resolution that you are looking for. You may hit the jackpot and get one who knows what they are talking about, let’s hope that that is the case. I wish you luck.

[Hidden]

I never visit the GP's or Endos they mostly know nothing (so called specialists) I wasted my money on two and they both made me ill. I then joined this site and took a Blue Horizon blood test named (thyroid plus 11 ) this gave me all of the results I needed I then posted the results with the ranges on here for answers. I am now feeling well without a thyroid.

[shaws Administrator in reply to Hidden]

Your response will be encouraging to many and the fact that you have improved your health by avoiding the medical profession and 'doing it yourself'.

[Skeog]

Levo has been up’d to 200mg and a Short Synacthen Test is booked for 27th.