Help understanding results

[Handsome14]

I've posted before but I still have lots of questions so I've numbered them for ease. I'm seeing my Endo Monday so would like to go prepared to get the best results so apologies for length of this post

1. If my T4 (14.8 - range 10.8-25.5) is low end of range (I take 125mcg T4 and 10mcg T3 since 25.9) but my TSH is also low (0.07) can I still ask for an increase in T4 even though TSH is low ie how low can TSH go. T3 is 4.5 (I don't know range)

2. Would having a thyroidectomy solve the problems I'm having and hence forth put me on the same dose forever

3. Back in 2018 I was seeing a functional doctor (I was desperate for help) and she found faulty DIO2 gene. Does this mean I need T3 or can I try just taking T4 only. The reason I ask is that I recently increased my T3 from 5mcg to 10mcg (25.9) and although my mood improved I now have shortness of breath, intermittent headaches (not severe) and occasionally I'm aware of my heart beat - could this be T3?

4. Lastly, why do levels fluctuate and sometimes decrease (T4 in particular) when dose has increased - am I oversimplifying things by thinking if you increase your levo dosage your T4 will increase too.

Thanks in advance for any help you can give

[Lalatoot]

Handsome 1. you can ask for an increase. However if the endo doses by tsh they are unlikely to give it. However if your FT4 and Ft3 are well in range you can argue that you are not overmedicated. Your TSH is likely to be well under range as you are on T3 liothyronine.

2. No a thyroidectomy is a major operation and not to be taken lightly. There are major risks with a thyroidectomy regarding damage to the vocal chords and to the parathyroid glands which control calcium. There is no guarantee that you would with a thyroidectomy remain on the same doseage.

3. This means that your conversion is compromised and you need combo T4/T3 treatment

4. Fluctuations occur because you have hashimotos. Also increasing levo T4 might not result in an increase in ft4 if absorption is compromised for example. The body is not a machine that runs like clockwork - there are many variables from day to day that affect our hormone levels.

[Handsome14 in reply to Lalatoot]

Thanks for your helpful reply Lalatoot. May I ask another question - so if my TSH is low should I be feeling well or can an increase in meds get me feeling well again regardless of where tsh is? I know my symptoms are thyroid related but sometimes with this hidden condition you start believing 'is it all in my head' (I'm sure you can relate to that) so I'm wondering if I increase my t4 and perhaps t3 will I feel better - I do hope so because I'm beginning to doubt I'll ever be back to my old self

[Lalatoot in reply to Handsome14]

Handsome. It took me 2 years of slowly and gradually altering my T3 and T4 doses until I got to doses and results where I thought I would stop changing doses and see what the longer term would bring. Another 6 months on and I am still improving with no changes of doses. so you see it is a slow process.Can you increase with such a low TSH? Well I have. Because our hormones come from an external source and our thyroid is damaged the TSH feedback loop is deregulated too so it is better to go on FT4 levels and FT3 levels rather than TSH as a guide to dosing. I am happy to have a non-existant TSH as long as FT3 stays in range.

Your problem might arise if you are dependent on the NHS or a private endo agreeing to prescribe an increase. Many don't understand about TSH becoming irrelevant and will look to that result rather than the actual hormone levels. I am lucky, being outspoken and 65, the endos I see (useless though they are) are happy to ignore my TSH on the understanding that this is my specific wish.

On combo it becomes a very personal thing. Some folks are well with low FT4 others need it over 50% through range. Most need FT3 well over 50% through its range.

So you have to wing it - trial and error. You can only change 1 thing at a time. Then you wait 6 to 8 weeks do bloods and think about the next step based on how you feel and your blood results.

I started from 100mcg levo. My endo prescribed 50mcg levo and 20mcg lio T3. It took me months to work my way to these doses. Then I felt ill because my FT4 was 0% through range and Ft3 74% through range. I increased my levo by 25mcg. Gradually changing one thing at a time I worked my way up and down to my current dose of 100mcg levo and 7.5 lio. My FT4 is 46% through range and FT3 100%

[Handsome14 in reply to Lalatoot]

Such a great reply May I ask how your ft4 was 0% through range when you were on levo

[Lalatoot in reply to Handsome14]

Don't mistake 0% for nothing. 0% means bottom of the range which was 12.

Because I was not on a high enough dose. My thyroid produces a negligible amount. Bottom of the range was 12 top of range 25. Also taking lio T3 surpasses FT4. So on 50mcg my FT4 was at 12 or 0%.

[vocalEK in reply to Handsome14]

The percent through range is determining how far through the range your results put you. Say, for example, the range is 2.0 - 4.4. This gives you 2.4 units total to work with. If your result is 2.0, you are 0% through the range since your results put you right at the bottom. It is also possible to be below the range, which would be a negative percent. If your result is 3.2, you are halfway through the range. So you take your result (3.2 in our example), subtract the bottom of the range (2.0 in our example), giving you 1.2. Then divide the total range (2.4 in our example) by this result (1.2) which give you 0.5 (or 50%). I find it easier, however, to just use this calculator: chorobytarczycy.eu/kalkulator

Ignore the Polish. Just type your result into the first field, then the bottom and top of the range into the next two fields. When you have all the numbers in that you want to check, click on the blue button labeled Oblicz.

[helvella Administrator in reply to vocalEK]

Or:

helvella - Range Calculator Spreadsheet

A spreadsheet for calculating a test result as a percentage through the reference interval (range).

This is an Excel spreadsheet but is likely to work in other spreadsheet software.

From DropBox:

dropbox.com/s/2hux0bhfw4avh...

[shaws Administrator]

I believe removing a thyroid gland is the last thing to think of. We don't understand how important the thyroid gland is until it starts to fail.

T4 is also called levothyroxine. It is the inactive thyroid hormone and its job is to convert to T3 (T3 - also called liothyronine is the Active Thyroid Hormone and our brain and heart have the most T3 receptor cells ).

This is the method for blood tests:-

Always get the very earliest appointment. It is a fasting test but you can drink water. Do not take thyroid hormones until after the blood draw, Always get a print-out of your results for your own records and you can post if you have any queries. You might have to book weeks ahead.

Ask GP to test B12, Vit D, iron, ferritin and folate as we can have deficiencies which should be rectified.

[Localhero]

3. How are you taking your T3? Assuming all in one go, you may find that splitting it into 2 or 3 doses helps your body to make better use of it. Another thing to consider is that increasing by 5mcg in one go was too much for your body to assimilate. You could try dialling if back a little, for example taking 7.5mcg a day for a week or so before returning to 10mcg when things settle.

[SlowDragon Administrator]

As you have Hashimoto’s are you on absolutely strictly gluten free diet…..and/or dairy free diet

Essential to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Is your Dio2 heterozygous (inherited from one parent) or homozygous (inherited from both parents)

How long have you been on 125mcg levothyroxine and 10mcg T3

Do you split the T3 dose? As 2 or 3 smaller doses

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test.

Last 1/3rd of daily T3 dose approx 8-12 hours before test

Do you always get same brand levothyroxine at each prescription

[Handsome14 in reply to SlowDragon]

Thanks for your helpful reply SlowDragon. Can you please explain a little more about DIO2 and what difference it makes if inherited from one or both parents - either way is T3 necessary

[SlowDragon Administrator in reply to Handsome14]

Dio2 gene variation means we frequently need a small dose of T3 prescribed alongside levothyroxine, split as 2 or 3 smaller doses through the day

If inherited from both parents, might need slightly higher dose T3 prescribed eventually

But either way, we start on T3 slowly

[SlowDragon Administrator in reply to Handsome14]

Are you currently splitting the dose of T3?

If 2 doses at roughly 12 hours intervals

If 3 doses at roughly equal 8 hour intervals

[JAmanda]

I didn’t feel well till my T3 was above 6. I take the T3 I’m given (25) and add another 7.5 which I self source. (I also take 112.5 Levo.) Where there’s a will there’s a way. Still hasn’t fixed me to the point that I can do any form of exercise. Find out your ranges and try and get your T3 higher to see if it helps..? Either by persuading your Endo to support you in your experiment or by going alone. As to the persuading but you have to pile on the pain, the exhaustion the effect on your work and relationships! Yup they’re fixated on the low tsh but once it’s suppressed I’d be going for an increase to help symptoms.

Advice above about splitting dose might be an option but it didn’t do anything for me (yet - still experimenting).

[Handsome14 in reply to JAmanda]

Thanks for your reply. In fact everyone has been so helpful - I really appreciate the support.May I ask when you say going alone if Endo won't support do you mean sourcing meds on the internet. If so, are you able to recommend any sites/organisations