Results advice: Ito I was diagnosed under active... - Thyroid UK

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Lorr67 profile image
15 Replies

Ito I was diagnosed under active thyroid 21 years ago but been going to Dr the last 5 years saying how unwell I feel. Extreme exhaustion all the time.. Sleeping for 14 hrs some days and still feel tired( not every day but odd days). Went bk to go to be told you need folic acid mg for 3 months... I pushed for more indepth bloods to be done but was told all is with range... Well why don't my body feel that way ( I said to myself)..

Here is recent results .. I am going to write to practice manager as I want to be referred and checked out properly. they just don't listern xx

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Lorr67
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shaws profile image
shawsAdministrator

Welcome Lorr67

I am sorry you haven't been feeling well for the past, long, five years.

What dose of levothyroxine are you taking? Our members will try to help you by giving advice. I am not too good at blood tests but your B12 has been dropping, so you should supplement with sublingual B12, methylcobalamin (not cyanocobalamin) which should help, you can take a large dose as any excess is excreted in urine so we cannot be overdosed.

Did your GP suggest injections for B12 as your B12 and folate are stated as abnormal on the print-out. If she does, you may not need to supplement. Also ask for a vitamin D, iron and ferritin to be tested as we are usually low on these too. A deficiency can cause symptoms too and we need everything towards the upper level. If iron is low it is difficult to convert levo to sufficient T3. T3 is the active hormone that allows us to function normally. As it says clearly on your latest test that B12 and folate is abnormal I suspect that's why she has prescribed folic acid. Ask your GP to do a Free T3 test (labs don't usually do this if TSH is 'normal' but if you are low in T3 it would show you aren't converting properly. If not you can get a private T3 blood test.

Personally, I believe you would benefit from some T3 added to your T4 (levothyroxine). Many people feel a benefit with this but, again, some GPs wont prescribe as they have been told that levo is all that is required. but that's not true for many people on this forum. If people are well on levo they wont be on this forum looking for assistance. I myself take T3 only and am well now.

The main problem nowadays is that GPs have been told to only consider the TSH result (it's from the pituitary gland not the thyroid gland) and it varies throughout the day. That's why we advise to have the thyroid blood tests as early as possible and not to take levo before but after the blood test.

If we want to feel much better we have to take things into our own hands, which you have done today, and read and learn to know more than the GPs as nowadays they are unaware of the clinical symptoms which medical students used to be trained in as there were no blood tests before the 60's.

Your symptoms do sound hypo. The object of taking thyroid hormones is to make us feel well but we need sufficient.

Others will comment on your blood tests.

Lorr67 profile image
Lorr67 in reply toshaws

Hi

I'm on 125 mg Levo.. Where can I get my bloods done private hun . I asked yesterday but he won't check T3 he said T4 was fine so no need. And do they except private results ?

Thanks hun

shaws profile image
shawsAdministrator in reply toLorr67

This is a list of private labs. I know some have used Genova and I have used Blue Horizon, who I know do a pin prick test, i.e. on a finger and they send you a product and you send it by return of post. They then send you an email with the result.

You can phone the labs and ask how much it will cost and if they ask for a physician you give Thyroiduk in reply. I think one gives a discount if you say Thyroiduk.

You can also email louise.warvill@thyroiduk.org for a copy of the Pulse online article by Dr Toft who was president of the British Thyroid Association. In it he says some us us need a low or suppressed TSH and also some T3 added to our T4. Send a copy to your GP and make an appointment to discuss adding T3 to your T4.

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

We eventually know more than most doctors about treating hypothyroidism and getting healthy.

Lorr67 profile image
Lorr67 in reply toshaws

That is very helpful thank you. Do u think think the Dr will take the results and act on them.. Do u ever hear of any problems. My gps are very all ward and do not understand always put it down to menopause etc... I know it's not though

Thanks again

shaws profile image
shawsAdministrator in reply toLorr67

You have been fobbed off long enough. Your doctors know little about the thyroid gland except look at the TSH level instead of looking at you, the patient. Although we have a lifelong condition, with the proper and adequate medication we can have a healthier and happier life unfortunately, no-one has told GPs but they should have been trained better.

I should hope they will take notice of your T3 as you have paid for it yourself.

shaws profile image
shawsAdministrator

Take levothyroxine with 1 glass of water and wait around 1 hour before eating as some foods interfere with the uptake of levo.

Leave 4 hours between taking levo and supplements/medication.

shaws profile image
shawsAdministrator

Bloods 'in range' is meaningless if we are sleeping 14 hours a day and feel dreadful the doctor is failing in his duty of care. That's what I believe anyway. Why pay to put doctors through medical school if they don't know the basic of metabolism, which is what the thyroid gland does - i.e. drives our metabolism particularly T3.

Lorr67 profile image
Lorr67 in reply toshaws

I've just looked at blue horizon the bloods are T3and also free T 3 is there any difference .. I didn't know if I should pay for the whole thyroid profile

shaws profile image
shawsAdministrator in reply toLorr67

I think the Free T3 alone will be fine. Your GP should really ask the labs but some labs don't do it if your TSH is in the 'normal' range. This is an excerpt giving an explanation (the same applies to FT4 - F stands for Free).

"The T3 testing only measures the "bound" or stored hormone that never goes anywhere.

I can't give you an answer why your doctor is saying Free T3 is not a good test because clearly it is the FREE T3 that should be measured to see what actually is going through your body to help your symptoms of your condition. The free testing IS the actual level moving through you - hense the word "free"

I had an endo that didn't rely on any Free testing only T4 and TSH - I was very ill for a long time - I left that office and found another doctor who really understands how to help hypothyroid patients get over their symptoms and balance the hormones out."

Lorr67 profile image
Lorr67 in reply toshaws

Great thank you so much I will order it today. And once results come I will post on here. I have been hypo for 21 yrs and been suffering in science , I'm on to em now :) ty

shaws profile image
shawsAdministrator in reply toLorr67

Onwards and upwards :) You've been ill long enough.

Lorr67 profile image
Lorr67 in reply toshaws

I've ordered from blue horizon but I have to find spires private hosp to do bloods is that right..

shaws profile image
shawsAdministrator in reply toLorr67

Whatever blood test you decide to do, you must leave 24 hours between taking levothyroxine and the blood test. Take levo after your blood test.

Lorr67 profile image
Lorr67 in reply toshaws

Hi shaws

I'm going to go get bloods done at hosp so just waiting for kit now. Having really restless nights very cold at times can't wait for results so I know where I'm at ty

shaws profile image
shawsAdministrator

I've deleted my earlier answer in case it was confusing.

This is from Blue Horizon and if you read page 1 you will see the Postal Fingerprick Kits (homebloodtests) then go to page 2 which tells you the cost which is much cheaper. You have to put in the code which is TUK10.

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

If you don't want to do a fingerprick test you can do the other which is much dearer. If you've made a mistake phone them Monday.

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