Fed up feeling ill: I was told by the doctor in... - Thyroid UK

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Fed up feeling ill

Brownie49 profile image
16 Replies

I was told by the doctor in December that my TSH was surppressed 0.16 (0.30-3.94) and my T4 was to high so they reduced my Levo from 75 to 50 mcg and was tested for ME/CFS which came back clear. Went back to the doctors still feeling ill and said that I read that hypo and fatty liver disease can cause issues with metabolism and that natural desiccated thyroid should be prescribed to help and not to be prescribed Levo. Doctor denied it and said there is no link whatso ever. I should exercise and diet! I asked to see a Endo again and she said no, there is nothing wrong I should think about taking antidepressants and put up with it as its probably menopausal. I explained I'm doing everything possible to lose weight, eat healthy take vitamins. I've gone from size 16 to 22 and do not want to get heart disease or diabetes or increase the risk of further liver disease, I really don't know what to do. Any suggestions would great greatly appreciated

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Brownie49
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16 Replies
shaws profile image
shawsAdministrator

Do you have your blood tests for thyroid hormones at the very earliest and fasting (you can drink water). Do you allow a gap of 24hours between your last dose of levo and the test? If not your results could be skewed. Most on this forum have read, asked questions and sourced their own thyroid hormones (if necessary).

The fact that she offered you an antidepressant would make me think that both your FT4 and FT3 may be low. These two are rarely tested. T3 is the only Active Thyroid Hormone. T4 is inactive and its job is to convert to T3 and you may not be on a sufficient dose of levo to convert to T3. Your can get the frees done privately if you wish through one of our recommended labs and they are home pin-prick tests.

The fact that you've gained weight might be due to not being on an optimum dose yet.

If we are hypo and are not on an optimum dose, dieting will not lose weight as our metabolism is far too slow.

If you've not followed the directions on how to get the best from a blood test (above) ask for a new test and also B12, Vit D, iron, ferritin and folate tested too. Get a print-out with the ranges and put them on a new post for comments.

Doctors know little about how best to get us to good health with relief of hormones. They only look at the TSH and T4.

thyroiduk.org/tuk/about_the...

Nanaedake profile image
Nanaedake

Please post your latest blood test results so we can advise. Post thyroid blood tests, vitamins and antibodies. Make sure you include the laboratory range as we need them to interpret results. Lab ranges vary from lab to lab and country to country. It's very likely your levothyroxine dose is incorrect and you may have vitamin deficiencies that prevent thyroid hormone from working efficiently.

Also, tell us whether you are on any other medication and have coexisting conditions that may affect how thyroid hormone is utilised or absorbed.

SlowDragon profile image
SlowDragonAdministrator

Four months ago your ferritin and folate were too low

Have these improved

As well as having B12 injections do you take a good vitamin B complex. We can be short of other B vitamins like B1 (thiamine) and B5. If you take one that has folate in rather than folic acid this may offer better support to your low folate than folic acid

3 months ago your vitamin D was only 42

You need significant supplements to increase.

Is your vitamin D up around 100nmol. How much do you supplement? Do you also take magnesium

Selenium supplements can help improve conversion too

Are you ruthlessly gluten free?

You make need the addition of small dose of T3.

Can you post recent TSH, FT4 and FT3

Clutter profile image
Clutter

Brownie49,

TSH 0.16 is below range but it's not really suppressed. What was FT4 result and range?

NDT isn't licensed for UK use so it is rarely prescribed on the NHS. Levothyroxine is the NHS's preferred therapy. I very much doubt that it will make any difference to fatty liver whether you take Levothyroxine, Liothyronine or NDT to replace low thyroid hormone.

NICE recommends: Advice should be sought from an endocrinologist (or referral arranged) if the person:

Has adverse effects from treatment with LT4.

Has cardiac disease.

Has an abnormal thyroid gland structure, atypical thyroid function tests, or an unusual cause of hypothyroidism (for example due to drugs such as amiodarone).

Has persistent symptoms despite treatment with LT4.

cks.nice.org.uk/hypothyroid...

Perhaps you could show your GP the NICE CKS

Brownie49 profile image
Brownie49

Thanks Clutter SlowDragon shaws Bloods always taken at 8am with a 24hr gap from the last tablet. Still taking Vit d/k spray 3000iu, Vit c capsules 1000mg,iron tablets 200mg Had my b12 jab today but doesn't make a difference. I need to get printouts but always given an excuse as to why she will not do it. I tried taking magnesium but gave me severe upset tummy so stopped. Docs will not test Vit d or Ferratin again as low but in range and told to self medicate. I've heard mejoli dates are excellent so eat one a day with Brazil nuts. My recent test was TSH0.16 (0.30-3.94) I will find out about T4 and they never test T3. I tried going back to the gym but felt drained and no energy, just going up stairs now knocks me out and doing hoovering I have sit down every few minutes. I can hardly walk my feet are killing me and to top it all I've now got tinintus!

SlowDragon profile image
SlowDragonAdministrator in reply to Brownie49

Tinnitus is often low B12 or possibly combination of low folate and ferritin.

You could add a good quality vitamin B complex daily.

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Suggest retesting vitamin D. Some of us need more than 3000iu to increase level

betteryou.com/vitamin-d-tes...

vitamindtest.org.uk

Or get whole lot tested privately

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 money off offers.

Brownie49 profile image
Brownie49 in reply to SlowDragon

Thank you SlowDragon , as i have b12 jabs would it be ok to take a B complex as well?

SlowDragon profile image
SlowDragonAdministrator in reply to Brownie49

Yes it would increase all other B vitamins

We are often low in thiamine and B5

All B vitamins are water soluble so we just pee out excess

drgominak.com/sleep/vitamin...

thyroidpharmacist.com/artic...

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

Would recommend you retest vitamin D and FT4 & FT3

shaws profile image
shawsAdministrator in reply to Brownie49

It is against the LAW for doctors not to give us copies of our blood test results. So make this clear. Mine charge 30p per sheet of paper.

shaws profile image
shawsAdministrator in reply to Brownie49

Tinnitus is a clinical symptom of hypothyroidism. Doctors know nothing about any clinical symptoms and seem to have no knowledge except to look at a TSH and T4. If they took notice of what the patients are saying and relieve our clinical symptoms that would mean giving us an optimum dose of hormones which suit the patient, not just levo. This would save much more money for the NHS as we'd need less consultations, feel well, and only need a yearly blood test.

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

Clutter profile image
Clutter

Brownie49,

There is no 'group' reply so you need to 'tag-in' members to alert them that you have replied. This demo shows how support.healthunlocked.com/...

The Data Protection Act entitles patients to their test results and ranges so whoever 'she' is has no right to deny you your test results. Ask the senior receptionist or practice manager for a printout of your results and ranges. There shouldn't be more than a nominal £1/£2 charge for recent results where testing was within the past 40 days.

Few GP practices test FT3. You can order private hometests but it is best to check TSH, FT4 and FT3 at the same time. Blue Horizon Thyroid Plus 11 and Medichecks UltraVits check thyroid, antibodies, ferritin, vitamin D, B12 and folate. Medichecks offer #ThyroidThursday discounts thyroiduk.org.uk/tuk/testin...

What were vitD and ferritin when you last tested and how much are you supplementing?

silverfox7 profile image
silverfox7

It's very naughty to reduce medication without testing FT3. That could be low and reducing FT4 will reduce it even more! Doctors don't seem able to realise this sadly. They are unlikely to test FT3 so the next best thing is to retest your minerals etc to see if they are improving. As they were low then that is a good indication that you haven't got enough T3 £in your body either. I had a similar problem so upped my supplements thoughbit took me 5 months to address and reverse the problem but well worth the effort.

humanbean profile image
humanbean

was tested for ME/CFS which came back clear

Assuming you had some kind of blood test, your doctor was telling you lies. There is no such thing as a test for ME/CFS.

For more thorough info on ME/CFS see this link (it was written by someone with the condition).

sites.google.com/site/cfste...

Brownie49 profile image
Brownie49 in reply to humanbean

Yes, I had a blood test and was told they were looking for markers. But the test came back clear.

humanbean profile image
humanbean in reply to Brownie49

There are no markers though! Researchers have been looking for markers for years!

I don't know what they tested, but if they said you don't have ME/CFS I would definitely suggest not arguing with them about it. Having ME or CFS on your medical records is not a good thing.

Brownie49 profile image
Brownie49 in reply to humanbean

I did say I haven't got either of them but when I asked for my vits and minerals to be checked she said I don't need them looked at. Every time I go with the same symptons they want to put me on antidepressants or slimming pills. Oh and also I can be referred to see a CFS specialist!

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