Should I be on meds?

[carlaarend]

Hi, thank you for this forum, it’s amazing.

I’m fairly new to the Hashimoto’s land and I’m hoping you can give me some advice to see if I should be considered for synthetic medicines. Long story short: last year, around September, I was feeling super tired, demotivated, anxious and with short memory loss. I am normally super sharp and positive, so I got worried and decided I needed to test vitamins or so because something was probably off. I went to a private nutritionist who ordered many blood tests, and we then spotted that some of my Thyroid results were off* range:

T4 = 84 (59-154)

*TSH = 4.22 (0.27-4.2)

Free Thyroxine = 16 (12 - 22)

Free T3 = 4.7 (3.1 - 6.8)

*Thyroglobulin Antibody = 141.4 (0-115)

*Thyroid Peroxidase Antibodies = 150.5 (0-34)

These would be indicators of Hashimoto’s Disease, correct? So we tried to put it in remission by changing diet and supplementing with great vitamins. Almost 5 years ago I managed to put Insuline Resistance in remission by changing diet, so I though this one would be easy, ha. Silly me. I didn’t follow the plan 100%, but I was quite diligent and did:

- eliminate gluten

- changed most chemicals and bpas around the house

- stoped most of the make-up

- tried to eat as clean as possible and was consistent on the past few months

- took many suplements and vitamins

- tried to decrease stress as much as possible

IN the meantime I went to see my GP, who said she wouldn’t ask for Thyroid Antibodies tests as my TSH, T3 and T4 seemed to be normal. She said the NHS does not investigate if you don’t actually have those indicators outside the range. I got disappointed, but though it wasn’t serious then and relaxed a bit.

However, most of the symptoms remain, so last week I went back to the private nutritionist and we ran the tests again. For my disappointment, the thyroid antibodies results are worse!

T4 = 97 (59-154) higher than 9 months ago

TSH = 3.76 (0.27-4.2) a bit lower than 9 months ago

Free Thyroxine = 16.9 (12 - 22) a bit higher than 9 months ago

Thyroglobulin Antibodies = 148 (0-115) higher than 9 months ago

Thyroid Peroxidase Antibodies = 190 (0-34) a lot higher than 9 months ago.

I’m now thinking if I should go back to the GP and ask again if I should be seeing by a doctor based on this results?

I am determined to change my diet in all ways possible to put this in remission, but would appreciate if you guys could share your experience. Perhaps my results aren’t at all too bad or perhaps I do need to seek medical advice and go into some meds to push these antibodies to normal range?

Thank you so much!

Carla

[greygoose]

You are hypo when your TSH hits 3. But the NHS likes it to reach 10 before it will deign to diagnose!

And you have Hashi's, which they should take into account, but don't. They won't even call it by its right name, and prefer to call it 'Autoimmune Thyroiditis'.

But, I really wouldn't put money on you being able to put it into remission by diet - or anything else, come to that. You might be able to slow it down, but I doubt it will ever go away completely. And, even if you manage to reduce your antibodies - and that's difficult to prove because antibodies fluctuate all the time - it won't mean you've got rid of the Hashi's. The antibodies are not the disease.

There are no 'meds' to push the antibodies into normal range. There is no cure or treatment for Hashi's. Which is why most doctors prefer to ignore it. You're already gluten-free, I take it. Does that make you feel better? You could also try taking selenium. But, the best thing you could do for yourself is to get onto thyroid hormone replacement (levo, etc.) and get your TSH down to zero, and keep it that.

But that won't be easy. Firstly because with your TSH at the level it is, you're going to have to fight for a diagnosis. Secondly because doctors are scared witless of a suppressed TSH and immediately want to reduce your dose. But, if you do manage to do that, it will calm down the immune system attacks on the thyroid, so less damage will be done. Which isn't exactly remission, but perhaps the next best thing.

[carlaarend in reply to greygoose]

Thank you so much for the detailed response @greygoose, I really appreciate it.

There are days where I feel back to normal and days where I just don’t want to leave the bed and even forget names of people I work around. It’s scary. But I think this has to do, as you said, the fluctuation of hormones.

I am from Brazil and many many years ago a doctor put me on T4 for weigh-loss (I was taking many meds for weigh-loss). I current don’t take anything since 2013, I even stopped contraceptives. I’m thinking that perhaps it will be easier to travel back home, visit the parents and see a doctor over there to get diagnosis and prescriptions?

In your experience, the longer I wait the worse it gets?

[greygoose in reply to carlaarend]

Oh, most definitely the longer you wait, the worse it gets. And, going back to Brazil for a diagnosis and prescriptions is a brilliant idea, as they are seemingly less primitive than the UK! But, what will you do for prescriptions when you get back to the plodding UK? Will your doctor in Brazil send you your medication? You have to think this through from all angles before doing anything. Because having a diagnosis from Brazil - or anywhere else - does not mean it will be honoured in the UK. Your UK doctor is highly likely to disagree and refuse to prescribe. Would you consider buying thyroid hormones on-line?

[Peanut31]

Hi Calaarend

I’m not an expert, but from my own experience.

You need to be put on Levothyroxine by your GP, yes you have Hashimoto’s which has been confirmed.

My results (antibodies) got worse as my Endocrinologist refused to give me Levothyroxine, despite diagnosing me with Hashimoto’s.

I got worse and I went to my GP, who did thyroid testing my TSH was 12.2 and others out of range.

I would guess you will struggle to get Levothyroxine from your GP as from my understanding the NHS will not treat you until your TSH is 10 or over.

Some GP’s may be more understanding and not be fixated by Thyroid results, but how the patient is feeling.

For us to feel normal it’s advised on here that TSH should be 1.0 or below, T4 19 or 20, T3 5.5.5

With Hashimoto’s vitamins levels play an important role, vitamin B12, ferritin, iron, vitamin D.

I would get those tested as well, you don’t need your nutritionist to do this, medi checks or blue horizon offer vitamin blood testing (as well as thyroid)

I’ve just had my vitamin levels checked by medi checks and I’m waiting for the results.

They offer a blood drawing service at many local hospitals as well. I just had it done at a private hospital for an additional fee of £25.00. This could be an option.

I’m also seeing a nutritionists as well, but I know the bloods testing can be obtained a lot cheaper than what she charges me.

Best wishes

Peanut31

[shaws]

Thyroiduk.org.uk have an 'interpretion of blood test results

which I think you ill find informative.

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

It is a pity that most doctors and endocrinologists really don't have much knowledge about how to treat patients with hypothyroidism or to diagnose them. They also know no clinical symptoms.

Rarely are the FT4 and FT3 tested:-

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

Even if TSH is low - but antibodies present. The patient should be prescribed levothyroxine.

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

Unfortunately, it seems that all doctors and endocrinologists in the UK are recommended to wait until the TSH is 10 before prescribing, whilst ignoring all clinical symptoms. The also know no clinical symptoms by which we used to be diagnosed, before blood tests were introduced. They may give other prescriptions for the symptoms rather than thyroid hormone replacements.

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