Is a changed diet my only option for lifelong hypo symptoms? Private doc advice was expensive and useless! Also I have DIO2 issue.

[DemelzaPoldark]

Hi Lovely Members,

I’ve had lifelong hypo symptoms and started investigations through private tests and a private doc after my GP said TSH in normal range at 3.66. 2 private tests follow, over 6 months having taken supplements but no thyroid meds.

TSH from 3.66 to 2.69 ( range 0.27-4.20)

Free thyroxine 13.3 to 13.4 ( 12.00-22.00)

Total thyroxine 86 to 82.7 ( 59.00-154.00)

Free T3 4.0 to 4.51 ( 3.10-6.80)

Reverse T3 26 to 24 ( 10.00-24.00)

The most recent tests done first thing after fasting.

Antibodies and vitamin levels are Ok, Little nodules under 5mm on thyroid but nothing sinister, scanner’s words.

DIO 2 gene test said faulty on both mother and father sides, likely to lead to obesity and insulin resistance.

Private doc said he would start me on trial of NDT if supplements didn’t work but has now changed his mind. He went onto try and put me on wildly expensive and dreadful looking ISAGenix slimming products, full of chemicals and god knows what else.

With these results above could anyone recommend NDT as a good option, or am I better to try, yet again a low carb diet?

Co-incidentally I’m going to Thailand in a couple of weeks, should I try and source/ trial some meds which may be available there?

Any advice gratefully received!

Best wishes from a very tired and chubby Demelza

[Clutter]

DemelzaPoldark,

NHS won't diagnose hypothyroidism until TSH is over range or FT4 is below range.

Did your doctor say why he no longer wants to start you on NDT?

It is possible to have negative thyroid peroxidase antibodies but positive thyroglobulin antibodies. Were both tested?

Which vitamins and minerals were tested and what were the results? Normal is not the same as optimal.

If your DIO2 testing shows a propensity to obesity then I imagine you will need to be careful about calories and excercise.

Thai NDT is popular on the forum but I don't know whether it is available over the counter in Thailand.

[DemelzaPoldark in reply to Clutter]

Thanks Clutter, vitamins are in normal range, but of course may not be optimal, both type of antibodies tested and are ok. It’s a conversion problem at cellular level, with high reverse T3 I think!

[Clutter in reply to DemelzaPoldark]

DemelzaPoldark,

You can't tell whether or not you have a conversion issue because you aren't taking Levothyroxine. rT3 26 was mildly over range but 24 is now within range.

[shond2015]

DemelzaPoldark

Sorry to hear of your terrible experience.....I am sure you will get lots of useful advice from members....However...have you read the book written by Dr Barry Durrant-Peatfield: "Your Thyroid and How to Keep it Healthy". ? There are lots on the market but I particularly like this one because is such an easy book to read...and you learn a hell of a lot. His GP expertise together with his amazing knowledge and understanding of all thyroid issues is deeply reassuring to those of us who are mostly left in the dark by our own NHS doctors.

One thing many thyroid experts are unanimous about (including Dr Peatfield) is that if you appear to be suffering many of the hypothyroid symptoms.....a low body temperature and a low pulse rate are both further indicators that you are hypothyroid. Unfortunately the NHS doesnt train its student medics this simple fact. if you haven't already...I would suggest you invest in a pulsometer and thermometer and take your temperature and pulse morning and night (resting).

Create a daily health record and write down your temperature and plus rates ...also note how you are feeling....keeping your own record is extremely useful to take to your doctor who then has something tangible to see regarding your state of health (because it clearly doesnt occur to them to observe you clinically !)

ps..(cynicism due to own poor experience).

[DemelzaPoldark in reply to shond2015]

Thanks so much. I have dr peatfields book and have just re-read his advice on diet and will try and do a lowGI pattern of eating and see if this helps.

[DemelzaPoldark]

That’s excellent advice, thanks. I have taken temperature, heart rate regularly in a diary. Sitting here by woodburner with hot water bottle a fur throw and a west highland terrier on top to keep warm this evening, so yes feeling cold is a constant!

[shaws]

You say 'antibodies and vitamins are o.k.' but do you have antibodies at all?

If you could put the numbers of your results for vitamins/minerals, with the ranges someone will respond. Vitamins have to be optimal not 'o.k.'

As far as I know if someone has a defective Gene DI02 gene you cannot convert T4 into sufficient T3. This is an important link:

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

Do not take slimming supplements as weight gain is one of the commonest clinical symptoms of hypothyroidism. Weight can be rectified when you are on an optimum of hormones. You need T3 as you cannot convert T4.

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

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

[DemelzaPoldark in reply to shaws]

I’ve posted the vits/antibodies previously and been advised by folks on those.

The problems are the DIO2 and the high level of RT3 and lowish T4 and T3. The private doc, who is on the TUK list, is the one now recommending expensive and rubbish slimming products, when he had said he would start NDT.

It seems a very odd about turn and now I have lost faith and am nervous about self medicating.

Thanks for your advice.

[shaws in reply to DemelzaPoldark]

I am not medically qualified but if you've been having symptoms most of your life you've never really enjoyed good health.

I think you will be interested in TUKs chart of when we can be diagnosed (or self-diagnose) and doctors want our TSH to reach 10 (in UK) someone may never reach 10 although some will do so if number goes above the range.

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

You do have antibodies, not too high so that's good. Going gluten-free can reduce the ones you have as these attack the thyroid gland and sometimes the person feels 'hyper' and at other times 'hypo'.

Because you have a defective gene which means you cannot convert T4 to T3,(levothyroxine to liothyronine) the addition of T3 to T4 is warranted.

We are not taking 'drugs' We are taking replacement hormones and many on the forum have recovered their health themselves.

If you are going to Thailand I've read that there is two thyroid hormone replacement NDTs. You can try a small dose i.e. 1/4 tablet (approx equivalent to 25mcg levo and after a week introduce another 1/4. Two quarters equal 50mcg of levo thyroxine which is a starting dose and every two weeks increase dose by 1/4 until you are symptom-free.

I must admit when I first took thyroid hormones (as I've had reactions to other medications previously) my stomach tightened as you don't know what to expect, but nothing happened and then that gives one a bit of courage.

However, as you've had clinical symptoms most of your life it is up to you to decide. Doctors used to prescribe a trial of NDT for patients before the blood tests were introduced and they only went by the clinical symptoms of the patients. NDT or other thyroid hormones aren't drugs but essential hormones which run our whole metabolsim.

Regards.

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

[DemelzaPoldark in reply to shaws]

Thank you so much shaws, I will try a tiny amount of NDT if I can source it and I’m feeling brave! Your advice much appreciated.

[shaws in reply to DemelzaPoldark]

This person was on the point of suicide as she was repeatedly told levo was the only prescription. This is her story.

hypothyroidmom.com/suicide-...

[shaws in reply to DemelzaPoldark]

email [e-mail] and tell her your experience of this doctor.

[DemelzaPoldark in reply to shaws]

The doctor reimbursed me, apologised and said he would review his advice with his superior, so I’ll leave it at that.

So sad that so many folk here on the forum have such difficult experiences with the professionals.

Thank goodness we have each other!

[shaws in reply to DemelzaPoldark]

Maybe your doctor will also learn something as well. You could always tell him to read this forum