More advice please: Hi all I posted 9 days ago... - Thyroid UK

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More advice please

jackinabox profile image
7 Replies

Hi all

I posted 9 days ago with my situation of debating with my GP about the dosage of Thyroxine to take. I was happiest on a slightly higher dose but they questioned my TSH level of 0.01. After discussion the GP decided to get advice from an endo. I have access to my medical records and basically they have replied saying that they didn't think such a small change in meds would be the reason why I feel so bad. They would like the GP to aim for 1.0 TSH but that they would suggest ok with my current level if I am aware of the risks of atrial fibrillation and osteoporosis.  I add the following quote and this is what I am wondering about...

A combination of Levothyroxine and Triiodothyronine may have some benefits in a small number of individuals but generally the results are disappointing and it certainly doesn't conform to international guidance.

I have found a significant number of individuals who have conflated the symptoms of oestrogen deficiency and hypothyroidism and I wonder whether you have considered this possibility. I hope this is helpful.

I haven't actually seen the GP yet - have an appointment booked but just to add in that I was taken off the mini pill in January as they weren't happy for me to be on it any longer at my age. So am wondering if this could be the oestrogen deficiency he describes?

Basically I feel a lot better since going back on my old dosage before they messed it around, but my head is still thick, concentration and confusion better but still poor. Didn't mention this before but  I also have pins and needles and numbness particularly during the night or when I bend my arms up for a while like looking at my mobile or holding a phone for too long. May not be related but worth a mention.

Hoping someone can help, I am really grateful for whatever info I can get.

Thank you

Jackie

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jackinabox
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shaws profile image
shawsAdministrator

You have to get B12 tested re pins/needles. Osteo and heart are more likely to arise with underdosing than taking T3 in the mix. I think their superiority in that levo alone is to be prescribed despite complaints from patients is wrong. They do spread rumours to frighten us into compliance.

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Clutter profile image
Clutter

Jackinabox,

There's no association with low/suppressed TSH and atrial fibrillation or osteoporosis. 

press.endocrine.org/doi/abs... You can obtain the Full Text of The Rotterdam Study by requesting patient access.

ncbi.nlm.nih.gov/pubmed/825...

If you read Treatment Options in thyroiduk.org.uk/tuk/about_... you'll see that some patients need suppressed TSH to deliver high enough FT4 to feel well.  Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP. 

"A combination of Levothyroxine and Triiodothyronine may have some benefits in a small number of individuals but generally the results are disappointing and it certainly doesn't conform to international guidance."

Testing FT4 and FT3 in addition to TSH would show whether you are a good or poor converter of T4 to T3.  If you have low TSH, high FT4 and low FT3 you will likely be one of the individuals who do benefit from the addition of T3 to Levothyroxine.  You can order private thyroid tests from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

_______________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

jackinabox profile image
jackinabox

Can I just ask is T3... Triiodothyronine?  I'm really sorry but I find a lot of this very confusing.

Clutter profile image
Clutter

Jackinabox,

Thyroxine (T4) and Triiodothyronine (T3) are the T4 and T3 naturally produced by the thyroid gland.

Levothyroxine is the name of thyroxine medication and is often abbreviated to T4. Liothyronine is the name of Triiodothyronine medication and is usually abbeviated to T3.

Glynisrose profile image
Glynisrose

Any thyroid replacement can suppress the TSH it is not a thyroid hormone anyway and is a poor  measure of what is going on.  Tell your doctor you are happy with the way things are and if he/she arguse then argue back.

jackinabox profile image
jackinabox

Thanks everyone

shaws profile image
shawsAdministrator

Our brain contains the most T3 receptors. Therefore it stands to reason that if our dose of thyroid hormones is too low we might not convert enough for our body needs. So I think that's the reason for continuing symptoms and doctors who treat holistically believe that we're given insufficient to resolve issues. They are more interested that the TSH is kept 'in range' than the patient's wellbeing.

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