Thyroid UK
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Where do I start if I want to self medicate?

You will see I’ve posted quite a few times on this forum.

I’ve been diagnosed with Hashimoto’s by a Endocrinologist and a scan has confirmed this.

The private Endocrinologist has refused to give me any medication as my TSH improved to 1.8 and my free thyroxine was 16.3.

My previous TSH was 6.

The only thing I did was go gluten free and I get all my vitamin levels to an acceptable figure.

I have a thyroid peroxidase antibodies 37.6 (0-34)

I feel terrible:

Neck stiffness

Tired

Brain fog

Ear issues

Loss of Libo

Hairloss

Worn out despite a really good nights sleep.

Swollen throat.

Major dark circles under eyes

Emotional.

Tummy problems (I’m seeing a nutritionist for help)

Please can anyone give me some guidance.

Best wishes

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Usually we can have gut problems and most probably due to being hypothyroid, as everything slows down. Also stomach acid can be reduced and as symptoms of low and high acid are so similar doctors usually prescribe antacids. Many on the forum supplement with digestive enzymes at meals and/or a good apple cider vinegar (with mother) dissolved in water or juice.

scdlifestyle.com/2012/03/3-...

scdlifestyle.com/2012/06/hy...

The aim is a TSH of 1 or lower but many doctors/endos believe if it is 'somewhere' in the range we are on sufficient. The aim is to have enough so as not to have clinical symptoms.

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

When you give numbers for test results you have also to put the ranges. The reason being that labs have different machines so ranges can also be different and they're need for responses to be made.

You have given a Free T4 result but we also need a Free T3 result (unfortunate that none of the medical professions understand the need for this). You can read on the following the reason for both FT4 and FT3.

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

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You might consider DIO2 gene test, but it won't guarantee you would get treated

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

If considering self treatment, start with Levothyroxine. Not T3

Vitamins need to be tip top levels first.

You have only just done strong antibiotics. You need to be patient (tough I know) and give gut time to recover from that

Nothing can be rushed with thyroid. Getting gut in good health is key

EBV links

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

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Have sent you a nmessage but do very carefully also check every single piece of cookware and ensure nothing is aluminium or non stick coated or foil or calphalon ......only ever use stainless steel or cast iron or glass

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I think the very first step is to draw a line in the sand for where you are now. Collect every bloody test you can, record temperatures and pulses for a couple of weeks, make a very good record of symptoms. Even consider making a timetable of the whole week and recording how much you can do or symptoms hourly or at least in 4 or 5 blocks for the day. This is all as a reference so you can compare in a few months or years.

Then make sure all vitamins and minerals are optimum, as advised all over the forum.

Then you need to decide what you want to try. On the NHS Levo will have been the only option, but this is the least popular for patients. A mix with T3, T3-only, or NDT are other options. There's also a strategic element. If you start Levo only you may have the long term goal of getting this on the NHS, but you will be unlikely to get any of the others on the NHS ever, so it's permanent self medication.

If you don't yet have an opinion on which option you'd choose, hang around and read the forums for several months, and get hold of some books. Stop the Thyroid Madness is a good start, I like Durant Peatfield's book. You will see other recommendations on the forum. You need to have a clear idea of why you've chosen a form of tablet, and how you will monitor and confirm that you're improving, or identify if you've become over medicated. We see people often on the forum that have started self medicating with very little knowledge.

Personally I was on the forum for roughly a year before I started self medicating. At the time I was too ill to do much reading, so I based most of my knowledge on the forum, links I followed, and skimming a few books. I also saw a few private doctors, became pissed off with them, and finally saw Dr Peatfield who started me off on NDT. I've been ultra cautious and had blood tests every 6 weeks, although the traditional way with NDT is to go on symptoms only.

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Oh yes, then the end of the beginning is to request on the forum for a link to a place to buy whatever you've chosen.

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Peanut31,

First decide which thyroid medication you are going to use ie Levothyroxine or NDT. Start with a low dose either 25mcg Levothyroxine or 1/2 grain NDT (30mg).

After 6-8 weeks have a thyroid test including FT3 to check levels. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts. Post the results on the forum and members will advise whether to increase dose.

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Thank you clutter.

I’m off to the GP tomorrow, I’ve been feeling so poorly that I asked my husband to drive me there and speak the receptionist face to face.

I was informed the next appointment for my allocated GP was 18th January.

The expression on my face and maybe the bags under my eyes looking like of zombie must of prompted her to say that, that GP was in tomorrow and if I can go at 8am they will give me a time slot for that day.

I have heard lots of people can’t get on with Levothyroxine.

I am very doubtful they will give me anything as why would they overrule my Endocrinologist. I’m taking my hubby with me as well.

Best wishes and thank you for all your advice.

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Peanut31,

GPs are usually advised to refer patients to endocrinology for an endo's recommendation before prescribing Liothyronine (T3). NDT isn't licensed for UK use so it's unlikely your GP or end will agree to prescribe.

If you post your recent TSH, FT4 and FT3 results and ranges we can advise whether you need to reduce Levothyroxine dose when adding T3 if you intend to self medicate.

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Thank you clutter.

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