Under Active Thyroid Residual Problems - Thyroid UK

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Under Active Thyroid Residual Problems

Rainer1758 profile image
22 Replies

Hi all lm having problems with my Thyroid....l have an Under active for which l taking Levothyroxine 100mg......but l still have many symptoms of Under activeness...….l still feel tired all the time,,,,l have trouble going to the toilet,,,,,,l have terrible bloating and many other residual symptoms...….

On a recent visit to my specialist l was told that l would have to live with All these Residual Symptoms,,,,,my specialist told me that 1 in 5 women have to live with these problems......l don't think it seems right, l was informed that taking T3 would help but l can not get theses prescribed by My GP any help would be great....Simple language lm not Medical Thank you in advance

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Rainer1758
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22 Replies
SeasideSusie profile image
SeasideSusieRemembering

Rainer1758

It sounds as though you may be undermedicated.

The first thing to do, so that we can help you, is to post your current test results for the following

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

We need the thyroid tests results to see if you are optimally medicated, please give reference ranges alongside results, eg

TSH: 2.5 (0.2-4.2)

We need the vitamin results because these need to be optimal for thyroid hormone to work properly. Please give the units of measurement for Vit D and B12, as well as the reference ranges for all of them.

If you don't have them all, you could ask your GP to do them but - if you are in the UK - you may not get FT3 and thyroid antibodies tested. You may or may not get the vitamins tested.

If you can't get them all done with your GP then - if you are in the UK - you can do a private test with one of our recommended labs:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer.

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Please also say if you are taking any other medication and any supplements.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Rainer1758 profile image
Rainer1758 in reply toSeasideSusie

l will get a copy of my test results and be back asap...Thank you for taking the time to speak to me

shaws profile image
shawsAdministrator

Well seen the 'professional' isn't a woman due to his response. On this forum we have, mainly, decided to look after our own thyroid health as the more people join the forum it seems to get worse. I'd follow at SeasideSusie's advice.

It is ridiculous that we have to be on the internet for advice. Thousands seem to do fine on levothyroxine but the majority on this forum they do not and that's why they've become members.

It is very easy for the professional to say we've just to 'get on with it' but with our disabling smptoms we just cannot and we would love to be 'healthy again'. I do doubt whether they actually know what the function of the thyroid gland does. It runs our whole system from head to toe. Previous to blood test when they were introduced in the 60's (I believe) we used to get prescribed NDT (natural dessicated thyroid hormones) made from animals' thyroid glands so more conducive to the human body and it was prescribed from 1892 upon clinical symptoms alone and no blood tests. Some also prefer a T3/T4 combination and many scientific researchers have found that it can also relieve symptoms.

If you follow advice you can get well again and some of us have even gone so far to source our own thyroid hormones.

naturalthyroidsolutions.com...

hormonerestoration.com/

The main problem is that the professionals only seem to look at the TSH whilst ignoring disabling symptoms which can be relieved if they came onto this forum to find out how.

Tginger profile image
Tginger in reply toshaws

I don't mean to be sexist, but when I saw a male endocrinologist with a massive list of symptoms while being on 100mcg levo only, he said he did not know why I had these symptoms and according to him it was actually not possible for me to have these symptoms, so he dismissed me without any further action or advice. I was lucky to see a female endo in three months time and she was more sensible and understanding and confirmed she was happy with me taking T3 prescribed by a private endo because T3 made a big difference to how I feel.

shaws profile image
shawsAdministrator in reply toTginger

How 'wonderfully' this endocrinologist proves absolutely the fact that they are completely unaware that T3 is the hormone that enables everything in our body to work. The heart and brain contain the most T3 receptor cells - in fact we have millions of T3 receptor cells in our body.

I'd give him a question and expect an answer. i.e. what is the Active Thyroid Hormone - if he says T4 tell him he's wrong. It is an inactive thyroid hormone. If a patient's body doesn't agree with this hormone replacement or able to convert it to T3 we will have disabling symptoms. T3 is also synthetic but because it doesn't need to be converted goes directly into the T3 receptor cells. Patients should be allowed to trial different replacement thyroid hormones.

I'm glad the female endo agrees that you take T3.

I couldn't get on with levothyroxine at all and in fact was more unwell than before I diagnosed myself when TSH was 100. They cannot understand that we are not machines. i.e. you check a car's battery and fill up with oil and it works. It doesn't quite work like that in a human body - we are all different.

He obviously hasn't 'learned' any symptoms which all doctors knew before they introduced blood tests and T4 (levothyroxine) alone.

Before that we were diagnosed upon symptoms alone and given NDT. Natural dessicated thyroid hormones and many - today - still take NDT but have to source it privately now because the Association also withdrew this a few months from the NHS ago, limiting the patient to T4 only, NDT is T4, T3, T2, T1 and calcitonin. They actually made False Statements about it in order to get it withdrawn. Despite one of TUK's advisers sending a Rebuttal - they never did respond even though Dr Lowe sent three yearly reminders to them before his early death caused by an accident.

If Hilary Clinton has recovered with NDT, why cannot other women be permitted to recover their health. If we have money we can see whatever doctor we wish and source prescription medication but on the other side of the coin many people cannot even continue to work due to their being denied .hormone replacement which restores their life to normal. When people are continually unwell they cannot even believe they can improve their health.

The aim of thyroid hormone replacement is to resore our body to 'normal' not search the internet looking for answers. Thankfully we have the internet and we can search and find answers that may resolve our disabling symptoms.

Tginger profile image
Tginger in reply toshaws

I mentioned T3 to the male endo and he said that taking synthetic T3 is unnatural to our body this is why it shouldn't be taken under no circumstance. I then asked about taking synthetic T4 which, following his logic, seems to be unnatural as well. He couldn't respond anything other than 'oh, that's different, T4 is ok'. What a rational explanation! Referring to intellectually impaired doctors as noted by Hillwoman :)

shaws profile image
shawsAdministrator in reply toTginger

I had to laugh (although no laughing matter) that those who are supposed to be knowledgeable about hypothyroidism and the relief of clinical symptoms haven't a clue - do they? Definitely it would seem to be confirmed by the comments from patients on this forum.

Ask next time what is T4's function in the body? Let's have his response.

Ideally - and it works for many but not for everyone - Levothyroxine is T4 alone. It is supposed to convert to T3 - so why would T3 not be prescribed if it harmed us. T4 is inactive and HAS to convert to T3 but we have to have a sufficient dose, to bring TSH to 1 or lower (not somewhere within the range which may be up to 5).

Would he prescribe NDT (withdrawn due to False Statements) which is 'natural' as it is made from pigs' thyroid glands. It has been given to patients since 1892 and saved lives. Before that we all died of a myxedema coma.

drlowe.com/thyroidscience/C...

The above doctor (now deceased) stated in his website that levothyroxine became No.1 due to payments made by Big Pharma to doctors/endocrinologists in order for it to become No.1 prescription for hypothyrodism worldwide ! Of course, they made even more profits by doctors prescribing 'other' for the symptoms, i.e. antidepressants, pain relief and whatever else - who knows what.

The pity is that those who do not recover their health on levothyroxine are punished as if it is the patient's own fault that levo doesn't erradicate symptoms.

Rainer1758 profile image
Rainer1758 in reply toTginger

Thank you

shaws profile image
shawsAdministrator in reply toRainer1758

Do you follow this routine when it comes to getting blood tests for thyroid hormones:-

1. The earliest possible appointment.

2. Fasting (you can drink water).

3. Allow a gap of 24 hours between last dose of levo and test and take afterwards.

This procedure helps to keep the TSH at its highest as that seems to be the only result they notice and prescrib.

4. TSH drops throughout the day so if you had a late p.m. blood draw your results would be different to an early a.m. test.

5. Always get a print-out of your results for your own records and make sure they have the ranges as well as the results. Without ranges members are unable to comment due to labs using different machines.

NWA6 profile image
NWA6

Hey Rainer1758. Can you post your results, I bet they don’t look good if you’re still feeling symptomatic 😔

And NO!! You do NOT have to put up with ‘residual symptoms’ how these ‘specialist’ can get away with saying such utter rubbish is beyond me 😣

The whole point of the fantastic medicine that we have is too replicate the natural thyroid function. When properly medicated we can live as if we have no condition.

Who told you taking T3 would help? If you have a history of full Thyriod results it would be quite easy to see if you’re a candidate for T3. Most people do very well of Levo but they simple are not on high enough dose because the GP’s are obsessed with the TSH being mid range which is absurd. FT4/FT3 results are the best indicator of how to move forward.

Rainer1758 profile image
Rainer1758 in reply toNWA6

l will get a copy sent to me with my results.....Thank you for your help & speak soon

shaws profile image
shawsAdministrator in reply toRainer1758

Ensure that the ranges are also stated along with the results. Labs differ in their machines and so might the ranges which enable members to respond.

Yes, they live with them because of doctors like yours! Why should they have to? As well as good levels of thyroid hormones you also need optimal vitamin levels and if constipated, you might need to supplement magnesium. It's unlikely that a doctor with that attitude will test B12, folate, ferritin and vitamin D, so you might need to get private tests done

Rainer1758 profile image
Rainer1758 in reply toAngel_of_the_North

thank you for your help

Hillwoman profile image
Hillwoman

I despair of this highly paid profession. It would seem that not only are endos sexist and obnoxious to their female patients, but they are also intellectually impaired.

I can't add anything but sympathy to the excellent advice you've already received here, but I do hope your health improves before too long. x

Tginger profile image
Tginger in reply toHillwoman

"but they are also intellectually impaired" -- this made me laugh :) good point!

shaws profile image
shawsAdministrator in reply toHillwoman

Your comment made me laugh aloud too. I wonder if they should have their TSH and FT3 tested? They would probably get a surprise if T3 is bottom of the range.

Kristenlk profile image
Kristenlk

Magnesium glycinate is the form you want for constipation. I would try 400 mg and up the dose to 800 or 1200 if you don’t notice any ill effects from 400. Make sure to get a trustworthy product. A prokinetic for motility can help, too. Ginger is a natural option that has been helpful for me, but I would dose up very slowly in case you react to it.

Rainer1758 profile image
Rainer1758

thank you all in this Forum....l look forward to speaking to you all very soon when l get my results....You have all give me the hope that l will lead normal life very soon. Again Thank You

Rainer1758 profile image
Rainer1758

I must say that it is Not my Personal Dr that has give me that conclusion. It was a Kent NHS Specialist & Im an Essex patient. My Dr is excellent. I will go & get a Full test. Im so grateful to All Your help. Thank You & See You Soon

Fluttergirl profile image
Fluttergirl

I was misdiagnosed as hypothyroid for several years now until I went to a male endocrinologist recently and was told I have Hashimoto's. You might want to make sure that you don't have Hashimoto's and are being treated for the correct problem the treatment is similar but different if that makes sense

NWA6 profile image
NWA6 in reply toFluttergirl

Hey fluttergirl. I’m not sure I understand what you mean? Hypothyroid is Hypothyroid, Hashimotos is your reason for being Hypothyroid and other people will have different reasons, secondary, cancer, nodules, unexplained ect The treatment for Hypothyroid is the same regardless.

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