Help! I'm hypothyroid and feeling exhausted and miserable!

[rayclarke]

Hi everyone, I am a long-term hypothyroid sufferer, diagnosed 28 yars ago. I am also extremely sensitive to all meds, and am on 100 mg of levothyroxine in pill form, plus between 12mg and 12.5mg in liquid form (yes, I find the slightest difference in level makes a difference in how I feel!).

For the last year I have felt miserable, to say the least. In spite of trying to adjust my thyroxine level, I get palpitations, not breathless, but extreme exhaustion, chest pain, and generally feel rotten. I have had all sorts of heart investigations, and nothing particular has been found, except for two leaky heart valves about 15 years ago.

So, I have been putting it down to problems with my thyroid medication.

I have just done, for the first time, a private blood test, and I show the results and ranges below. As per advice here, I left off my levothyroxine for 24 hours prior to the test, and had an early morning fasting blood draw done, courtesy of my GP practice.

My GP, as per usual NHS practice, will only do the TSH test. I am concerned that I may be a poor converter to T3, as I seem to be over-medicated (my GP is always wanting me to reduce my levothyroxine if possible), but he is happy for me to set my own level depending on how I feel.

My questions, to all you good folks, are as follows:

a) I can see I am defficient in vitamin D - what is the best regime for improving this, and how much will this affect my feelings of exhastion and unwellness?

b) It seems I am a poor converter of T4 to T3, being only approx 30% through range. Should I supplement my levothyroxine with T3, or alternatively try an NDT version of thyroid medication?

c) can I assume I do not have Hashimoto's?

I am desperate to get this all fixed, as life at the moment is really miserable! I would love to hear what folks think, and appreciate any comments that might be made.

Results of recent blood test:

Inflamation: CRP HS 0.99 mg/L (Range: < 5)

Ferritin 281.00 ug/L (Range: 13 - 150)

Vitamin B12 - Active 82.700 pmol/L (Range: > 37.5)

Vitamin D 29.20 nmol/L (Range: 50 - 175) (Deficient <30, Insufficient 30 - 50, Consider reducing dose >175)

TSH 0.09 mIU/L (Range: 0.27 - 4.2)

Free T3 4.22 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 26.500 pmol/L (Range: 12 - 22)

Thyroglobulin Antibodies 22.500 kIU/L (Range: < 115)

Thyroid Peroxidase Antibodies <9.0 kIU/L (Range: < 34)

[RedApple]

rayclarke,

TSH 0.09 mIU/L (Range: 0.27 - 4.2) and Free Thyroxine 26.500 pmol/L (Range: 12 - 22) both suggest you are over medicating on levothyroxine, especially as you say the blood was drawn 24 hours after your last dose.

I would consider reducing your levo dose before adding any form of T3.

'Ferritin 281.00 ug/L (Range: 13 - 150)'

This looks rather high to me, but hopefully someone with more knowledge about this than me will comment.

[jrbarnes]

I'm not an expert but there could be two possibilities. The first one is that you're a poor converter and adding more Levothyroxine isn't helping. Very high levels of T4 and low levels of T3 is debilitating and from what I see here you're T4 is well over the range and it's not leading to more T3.

The second possibility is something I've read about called UBIQUITINATION: "This is the “Glass ceiling” of T4 monotherapy — in some patients, there is a biological limit on how much T3 they can get out of treatment with T4 thyroid hormone alone. You simply can’t force the body to convert more T4 into T3 by increasing the T4 dose, or it will backfire and you will paradoxically get less T3 out of it." I quoted this from thyroidpatients.ca, which has been informative on the issue. Maybe this describes your current situation.

[DippyDame]

No wonder you feel unwell , you have very lowT3 but you know that already!

Your FT3 4.2 (3.1 -6.8) is only 30.27% through the ref range it should be close to 75%

Your FT4 as you can see is over range.

This is a classic example of poor conversion i.e High FT4 with low FT3.

Current thyroid diagnosing and testing is appalling, your medics would never have picked this up without FT3.

Now they tend to only test FT3 if TSH is totally suppressed....as I recently discovered!

Your TSH is fine. However as a pituitary hormone, not a thyroid hormone it offers little help after the patient is medicated. It is basically a messenger which, put simply, responds to thyroid levels......very low thyroid levels = high TSH and high thyroid levels = low TSH. Yet, medics consider it the gold standard test. I despair!

In your case poor conversion is causing low T3. T3 is essential to every cell in the body and they need a constant and adequate supply for good health. You are suffering the converse.

Poor conversion can be supported by optimising folate, ferritin, vit D and vit B12. As you can see from your labs you need to supplement these.

Have you considered the Dio2 genetic test? It can be useful in achieving a T3 prescription especially if inherited from both parents ( my result!)

thyroiduk.org/getting-a-dia...

Low antibodies suggest Hashimoto's is not a problem

Increasing levo will exacerbate the problem you are already over range

I suggest you raise nutrients first, then ask for a referral to an endo with a view to getting prescribed T3.

Or.....as many of us do buy T3 and self medicate! Unfortunately that comes with it's own hurdles. Members can however advise

In the extreme you may have a form of thyroid hormone resistance, causing low tissue T3 (as I do) and need a large dose of T3 but it's far too soon to consider that....just mentioning it so that you know there are solutions.

I'm not a medic so can only speak from my own experience, after much research, reading and support from here I now self medicate with T3-only and 3 years after I started my thyroid journey I am now recovered.

There is no quick fix ....but there is a fix!

You already know more than your GP by all accounts!

Come back and ask as many questions as you need to and members will try to help.

Take care

Best...

DD

[Hashihouseman]

Way too much t4 slightly inadequate t3 which will decline with reduced t4 so you need t3 replacement as well as t4 probably about 100 mcg levothyroxine and 5-7.5 mcg liothyronine. That’s my bet on your blood levels anyway. Super Suppressed tsh isn’t helpful and shows you’ve overcooked the levothyroxine.

[Hashihouseman]

Oh and as for comments about t3 levels, the % of the range idea is rubbish. We are all unique and the range is merely the lab range to compare results between labs.... the best guide in the first instance is the most common value for your peer group without a thyroid condition e.g. for a 50 yr old male (me) it’s 4.6-4.8 ft3 so aim for that first then see how you feel but you need to drop some levothyroxine for a week or so until you’re craving it then gradually introduce t3 then depending on how you feel and paying attention to resting heart rate, steady the doses for 6 weeks and do tsh ft3 and ft4 blood test, preferably the same time of day as your last test.

[Oatcake in reply to Hashihouseman]

Interesting. Can you suggest a source for finding out what the normal FT3 for non-thyroid patients?

I think it may be even more idiosyncratic. I vaguely remember reading that lower FT3 can indicate good absorption and use of FT3 rather than poor conversion. Some truth or myth??

[Hashihouseman in reply to Oatcake]

There are a a few studies of thyroid values in healthy populations such as the Norwegian health survey of tsh values in euthyroid and hypothyroid cohorts but the data I find most useful is contained in this peer reviewed research paper..... ncbi.nlm.nih.gov/pmc/articl...

[Oatcake in reply to Hashihouseman]

Thank you.

[tattybogle in reply to Oatcake]

There are graphs for 10 healthy individuals here ;

journals.sagepub.com/doi/10...

And also see Pilo's study of 14 people here;

thyroidpatients.ca/2020/05/...

This will give you an idea of how individual we are in health, and how this idea of an ideal fT4 /FT3 level /ratio is not much help if you want to know where you feel best , or what your levels were in health.

eg. On Levo, I have over range FT4 and mid range FT3 but don't function well. When i first found out my FT3 was mid range i thought , well that should be enough , it's normal, but now i've seen how many healthy subject have FT3 nearer the top of the range i wonder if i was one of those people in health and hence why i feel rubbish now.

[Oatcake in reply to tattybogle]

Many thanks for these references. Have had a skim but will read later. I am thyroidless but have been ok on levothyroxine. When I have had FT3 tested it has been to the lower end of the range, which makes me wonder if I am one of those who tended to have lower FT3 when euthyroid! Good reason to advocate for routine thyroid testing when healthy so we know where we stand.

[tattybogle in reply to Oatcake]

Yes that would have been a good idea although i guess this stuff is so complex that who knows if replicating pre-disease ratios would have the same result post-disease, but i'd still like to know what pattern i was before .

( I'm tempted to get my adult kids to get a full TFT tho' )

[DippyDame in reply to Hashihouseman]

Do I take it that your comment, "Oh and as for comments about t3 levels, the % of the range idea is rubbish. " was based on my response above?

Since I cannot claim to be either a medic or a scientist then I refer your statement to diogenes in the hope that, as the expert, he might choose to comment.

My health declined over roughly 50 years until, in desperation, I took control of my thyroid health and medication, largely supported by experienced and knowledgeable members here and much reading. Long story, short - I have a type of thyroid hormone resistance and need a supraphysiological dose of T3. As I set out on my thyroid journey I included percentage FT4 and FT3 levels in lab ranges as a tool to help guide towards effective titration of hormone levels - but much else too. The results also pointed me to poor conversion and later, the discovery that I am Dio2 positive/homozygous.

It looked as if I was going to follow my maternal grandmother who was bed ridden for years....instead, now aged 75, I have recovered well on the appropriate dose of T3- only. Undoubtedly there is an element of trial and error because, as you infer , we are all different with different needs.

I have no idea what, in my case, "the most common value for your peer group without a thyroid condition" might be. Can you please point to referenced research which might expand on this?

My concern is that the somewhat vague terms you use in relation to titrating the hormone dose are likely to confuse already concerned and unwell members whereas using percentage through ref range provides a clearer picture.

Just a few thoughts...

[Hashihouseman]

There are a a few studies of thyroid values in healthy populations such as the Norwegian health survey of tsh values in euthyroid and hypothyroid cohorts but the data I find most useful is contained in this peer reviewed research paper..... ncbi.nlm.nih.gov/pmc/articl...