Should I start NDT?: Hey guys. First off want to... - Thyroid UK

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Should I start NDT?

flamingpie profile image
10 Replies

Hey guys. First off want to say how much I appreciate this site and all the knowledge I've gotten from it. Ok so my story in a nutshell - I've been suffering from hypothyroid like symptoms for the past 2 years, including EXTREME sensitivity to the cold, constipation, dry skin, fatigue, depression and brain fog. I went to a doctor two years ago who would only check my TSH levels and said they were fine. At first I actually believed the doc when he said this was all in my head, but as time went on my symptoms got much much worse. Like so bad that I have a tough time leaving the house. I went to see a new doctor 2 months ago who reluctantly agreed to test my T3 and T4 levels. Here are the results:

Free T3: 2.6 (range 2.3 - 4.2)

T3 Total: 78 (range 76 - 181)

Free T4: 0.9 (range 0.8 - 1.8)

T4 Total: 6.0 (range 4.5 - 12)

TSH: 2.11 (range 0.40 - 4.50)

I have shown these results to several people who confirm that my levels are low and show signs of hypothyroidism. However my doctor said that since they were in range I was fine and once again this was "all in my head." This is infuriating me since these doctors have been ignoring my symptoms and just focusing on their uneducated interpretations of the bloodwork. In an act of desperation I order some NDT from a Thailand pharmacy with the plan of self medicating myself, while monitoring my bloodwork every few months.

Does this sound like a safe plan? Do you also agree based off my lab results that I am hypothyroid? Any advice/criticisms would be much appreciated, I don't know how much longer I can go on like this!

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10 Replies
flamingpie profile image
flamingpie

Oh I should also mention that my labwork also showed that I had very high cholesterol levels, which is odd since the only source of cholesterol in my diet comes from eating one whole egg a day....certainly not enough to make my levels shoot through the roof. If I'm not mistaken isn't high cholesterol also a sign of thyroid issues?

in reply toflamingpie

Hi, doctors won't diagnose until your tsh reaches 10 usually. Both your ft4 and ft3 are rock bottom though so that explains the total lack of energy. Many people self medicate I do but please bear in mind once you start self medicating it becomes almost impossible to get an NHS diagnosis. You would have to make yourself very ill by coming off meds to prove to them you are hypo. Sometimes once on NDT the tsh never rises again either. May be worth getting some vitamin levels checked, folate, ferritin, b12, vit D. You could do a blue horizon or medichecks diy thyroid test. Hope your feel better soon.

Jodypody profile image
Jodypody in reply toflamingpie

Try another doctor or pay to go private as a one off. Once you get diagnosed you could plead poverty and revert to NHS?

Binkie profile image
Binkie

Drs you have to love em!!! i had my thyroid removed and became very ill but for 6 years my dr said the test shows my thyroid worked fine!! shows how much they really understand. I started self treating in desperation and the differenc was so huge my dr was stunned and said 'dont tell me it really was your thyroid after all these years' i had repeatedly reminded him it had been removed! i no longer trust drs, i have a good endo now but i always check everything with this and a local group. Fellow sufferers know a million times more than the drs IMHO xx

silverfox7 profile image
silverfox7

Yes your results are low but as said difficult to get a diagnosis. To look after your thyroid though other vitamins and minerals need to be optimal so very worth while getting those checked and supplemented where necessary also look at the Thyroid Uk site as they have a list of thyroid symptoms. Have a. Lose look at that as many things on there and your GP could already be treating you for some and it's not working!

Also take your temperature every morning before you get out of bed and chart those. Presented by several symptoms your GP may agree to a trial of Levo. Forget about NDT at the moment, you need to concentrate on being diagnosed and Levo works very well for many, they just don't post on here. If everything else isn't in order then chances are you won't feel really well on whatever you take.

This is a very interesting article about low, so called normal, and optimal levels of thyroid hormones:

drrind.com/therapies/thyroi...

Like others have said, it would be difficult in most cases to be diagnosed with hypothyroidism unless your TSH is severely out of range. However, doctors such as Dr. Rind believe that healthy individuals without dormant thyroid disease have a TSH closer to 1, and most definitely below 2. Those doctors tend to consider the current TSH ranges outdated, and believe they should be narrowed down, as a TSH above 2 is a sign in itself that the thyroid gland is beginning to struggle.

Judging from your lab results, your thyroid gland has begun to struggle, and the pituitary gland senses that and has raised the TSH in order to try to get the thyroid to produce more hormones...in time, your TSH will continue to rise as your FTs continue to fall (as far as I know, total T3 and T4 don't tell us anything useful) but, as others have pointed out, most conventional doctors will be reluctant to prescribe treatment before your TSH is above 10.

You could of course start self medicating and see how you feel (you may be one of those requiring T4 only drugs, or a combination of synthetic T3 and T4, or NDT may indeed be the optimal treatment for you...the only way to know for sure is to try them all). The only problem is that will affect your future lab results, and could make it even more difficult to get doctors to listen to you...unless you are able to find an unconventional doctor accepting the idea that you can indeed be hypothyroid even if your TSH is below 10, and that the free Ts (especially free T3) tell us more than the TSH.

shaws profile image
shawsAdministrator

The medical profession sound so unprofessional when they insist that a hypothyroid patient is o.k. when the results come into the 'normal' range. Change your doctor but I doubt it you'll get one who best knows how to bring patient back to good health.

They are completely unaware that the purpose of replacement thyroid hormones is to remove ALL clinical symptoms and we feel well again. High cholesterol is a clinical symptom and tick off the rest on this link:

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

You will see from this link the way to detect hypothyroidism:

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

I think I'd be tempted to treat myself. Sometimes TSH never rises high enough to be diagnosed as they ignore all clinical symptoms and don't know any either.

Glynisrose profile image
Glynisrose

Start on a low dose say 1/4 grain and build up over a few weeks.

MelissaRz profile image
MelissaRz

I've never had my FT3 tested, but my FT4 and TSH are like yours - low. (TSH 1.05 (0.4 - 4.50) and

FT4 1.1 (0.8 - 1.8) In fact, I think my TSH is even lower than yours - yet I have a boatload of symptoms! I saw my GP and an Endo. Both said since my results were in normal range, I was "fine". Meanwhile, I've never felt worse in my entire life, and I'm the fattest I've even been, including during a pregnancy. I'm seeing my 2nd Endo this coming Tuesday. I will pray for both of us to be diagnosed appropriately so we can both feel good again! I'd love to hear how your experiment goes and what helps you to feel better . Good luck!!!

Insomania profile image
Insomania

Gawd I got that too, GP said I had to “let it go.” 🤯 They’d rather prescribe pills for each individual symptom. Their medical gaslighting making you anxious! Found a Dr eventually (privately); it was actually my psychotherapist who encouraged me to keep going, I was so down and fed up of not being listened to.

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