New. Help.where to start. Confused.

[Bobalob]

Hello everyone

Newbie here.diagnosed 3 weeks ago.

Bloods were

Free T4 - 6

TSH -186.2

ATP- 726.4

Free T3- 2.4

Was put on 25g by Doctor. Endo increased to 50g last week saying end game will be 75 or 100g probably. Ive had many symptons all my life. ( reynaulds, constipation, memory loss, dry skin ) but have functioned ok. recently feeling very spaced out, flat and weight gain, acid reflux, acid stomach, food in throat . Would prefer non synthetic but will see. Off to Dr P today.

Just so much to take in and understand, need an idiots guide. Feel ok but not brilliant, dont want to deterioate.

Where to start with suppplements ?? Doctor and Endo were not helpful in terms of alternative options. How do I know if I need T3 too ?

Eeek !! 😕

[jimh111]

It would help if you have the reference intervals to go with the above results (the numbers in brackets). Nonetheless these numbers show quite severe hypothyroidism. On the other hand the fact that you are surviving with this little hormone suggests you will do really well on adequate hormone and hopefully your treatment will be straighforward. I'm amazed that your endo said the endpoint would be 75 or 100 mcg, it is more likely to be 125 or 150 mcg. (mcg - microgram not g - gram! Your brain will be quite frazzled at the moment).

I'm not sure about the Raynauld's but all the other symptoms should disappear in time. You should feel much better in a month but it will take at least six months to get better. And better may be better than you have been for the last few years.

At this stage it is important to keep a record of all your tests, a little diary, as you will forget lots of things. It would also be a good idea to note how you feel now, your symptoms and what you can and cannot do. Also take a photograph of yourself to tuck away for the future. Occassionally patients have problems getting their doctors to keep them on an adequate dose of medication, these records will help. Keeping these notes will help you monitor your progress. By the way dry skin is a very good marker for hypothyroidism, it is highly specific.

Normally a good endocrinologist would put someone with your low levels on 100 mcg levothyroxine straight away. However, occasionally if they have been like this for a long time it can weaken their adrenals and they have an adverse reaction. If you are OK on 50 mcg then after a couple of weeks I would ask for an increase - there is no reason to delay recovery.

I would resist the temptation to get lots of supplements, natural thyroid hormone or restrictive diets. See how you do with the levothyroxine. You very clearly have 'primary hypothyroidism' which is caused by failure of the thyroid gland - yours is almost finished. If after three months or so you still feel bad and your TSH has been brought down below 1.0 then look into other options. There's no point restricting yourself or spending loads of money on supplements until you know the simple option hasn't worked.

Finally, a very simple guide to the numbers in case you haven't been able to read up on it. The pituitary releases 'thyroid stimulating hormone' to stimulate the thyroid gland to produce thyroxine (T4) and a little triiodothyronine (T3). As T3 and T4 fall the pituitary produces more TSH to stimulate the thyroid to produce more hormone. This is a feedback mechanism to maintain steady thyriod hormone levels. T3 is the active hormone that does the work in the cells, the body is able to convert T4 to T3 in various tissues. Thus T4 is largely a reservoir of hormone. If the thyroid starts to fail the TSH rises dramatically, it is very sensitive to lower hormone levels. Most healthy people have a TSH around 1 or 2, so yours is very high showing your thyroid is on the way out. You will have to take thyroid hormone for the rest of your life, but it is not a problem, you just take the tablet early in the morning before breakfast or at night if you like. You are now entitled to free prescriptions so ask your GP for a form if they haven't given you one.

[Treepie]

Before supplements you should have D3,B12,ferritin and folate tested .Make sure you get the results and ranges and post them for comment.Pleade note what is "normal" is unlikely to be optimal for you.

You need to have your TSH at around 1 or below. Most folk do ok on What you have been given which is T4 only. Some need T3 and ithers find natural dessicated thyroid suits them best.Many on this site are the minority for whom the standard medical support is not working.

I suspect as Jimh says you will need, like me 100 plus,I am on 125 my TSH was 102 but came down fast. I still have very cold feet most of the time .

[Bobalob in reply to Treepie]

Thank you for your answers. I am not sure what 'reference intervals ' mean.....?? Is that the range indicators at the side of my measurement. I didnt put them as I assumed the range is standard. Is that not so ??

I havent had those vitimins tested except iron, which Endo said was good.

It was 53.8 - range is 20-62.

So much to learn with brain fog !! Am being told Im extreme case but somehow my body has coped probably most of my life, Menopause now tipped it over the edge.

[helvella in reply to Bobalob]

Yes - the reference interval is the gap between the lower and higher numbers. Sometimes the phrase "reference range" is used - probably more commonly.

[Treepie in reply to Bobalob]

Yes the range is shown in brackets.But consider this a B12 range may be 310-900 and if you are 315 you are normal! But most on this site reckon optimal is 900-1000.

In answer to your other question about ranges: different labs use different machines and have different sample populations to create their ranges .They are not standard avross the country.Daft innit!

[greygoose]

You will need T3 if you are unable to convert correctly. But, it's a bit too early to worry about that, because both your FT3 and FT4 are under range. (But please do put ranges in future. They are not standard, because the range depends on the machine used for the analysis, and different labs use different machines.)

For supplements, you need to get tested. The basics are vit D, vit B12, folate, ferritin. Yours could be very low because you must have been hypo for a long time. So, get them tested and see what the levels are. If they are low, they will be adding to your symptoms. Do not take multi-vits. They are bad for a lot of reasons.

[Bobalob]

Thank you.

The ATP doesnt show a range. I believe its supposed to be less than 5.

The T4 is 6. Range is 9.01-19.05

and the TSH is 186.2 , range is 0.35-4.94.

[jimh111 in reply to Bobalob]

Yes reference interval is the range in brackets after the result. Almost everybody calls it a 'reference range' but 'reference interval' is the correct term as it is a statistical interval (the middle 95% in healthy people) and not a diagnostic range.

Your TSH and fT4 (fT4 means 'free T4', the amount of T4 not bound to proteins) indicate that you have 'primary hypothyroidism' - your thyroid gland is failing. In fact your thyroid has well failed. You will be experiencing moderately severe symptoms at this level, you may have had milder symptoms for some time. You will almost certainly need at least 100 mcg levothyroxine eventually. Unless you are elderly or have heart problems your doctors are being rather over-cautios with your treatment. I would expect them to up your dose quite soon. If you have only recovered a little after a few weeks do shy away from contacting your doctor or endo and asking for an increase.

It will probably take about six months before you are back to normal but you should feel much better in a few weeks time. In most cases patients with primary hypothroidism do well when their TSH is down to around 1.0 and their fT4 is brought up to about 15 to 18. You will probably need around 125 to 150 mcg levothyroxine eventually, unless you are a small person.