Summer hell: Hi, I'm new here. Have been taking... - Thyroid UK

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Summer hell

h1atus profile image
10 Replies

Hi, I'm new here. Have been taking Levothyroxine (75m) for about 8 years. My problem is not just feeling intensely cold in cold months but being unbearably hot in the summer. I can't cool down at all and my thyroid seems to be really badly affected. I start putting on a lot of weight and feeling foggy and exhausted but when the temp drops again I lose the weight and feel lively. Does anyone else have this experience?

I've started taking L-Tyrosine which really makes me feel a lot less foggy but doesn't help with weight loss at all. :(

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h1atus
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Ruthi profile image
Ruthi

Have you got any blood test results to share with us?

And have you seen this?

helpmychronicpain.com/blog/...

ncbi.nlm.nih.gov/pmc/articl...

h1atus profile image
h1atus in reply to Ruthi

I've never actually seen my results!

Ruthi profile image
Ruthi in reply to h1atus

Go and ask for them. Take no nonsense, you are entitled. I do find that just asking for them from the doctor (actual figures, including ranges) focuses the mind. And then we, who have been through it all before, can comment intelligently!

h1atus profile image
h1atus in reply to Ruthi

Yes, I've read this and other articles like it. Actually, I got the L-Tyrosine to help with ADD symptoms - didn't know about the thyroid implications but it instantly made me feel better. I also take Vit B12 as I'm vegetarian, to help with energy levels. That works too but makes me a bit speedy so I only take it a couple of times per week now.

puncturedbicycle profile image
puncturedbicycle

Sorry to hear you're unwell. Do you have copies of your blood test results? And do you know if you're optimally treated?

Sausage_Dog profile image
Sausage_Dog

I am the same. I always feel so much worse in the hot weather. Can't concentrate on anything because my head feels so weird

shaws profile image
shawsAdministrator

Welcome to our forum h1atus

I doubt you are optimally medicated as 75mcg is a low dose. Before blood tests and levo were introduced we were diagnosed upon symptoms and doses of NDT were between 200 and 400mcg. One doctor, now deceased, stated that many people were in a 'parlous' state due to too low a dose.

If you've not had a current blood test ask for a new one TSH, T4, T3, FT4, FT3, (this is the most important and I'll give you an excerpt below from Thyroiduk. Also get Vit B12, Vit D, iron, ferritin and folate tested as well. Excerpt:

FT3 = FREE T3

T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

The approx. reference range for Free T3 is 4 to 8.3

For your thyroid blood test, it should be the earliest possible and fasting (you can drink water) and allow 24 hours gap approx between your dose of levo and the test, This allows TSH to be at its highest as that's all the doctors responds to I believe.

Get a print-out of your results with the ranges and post on a new question.

h1atus profile image
h1atus in reply to shaws

Thank you very much. Very helpful. I'll do that next time I have a blood test.

In the very beginning I had just 50 which did seem to work but rapidly ceased to have much effect so I went back to the doctor who upped it to 75. Since then, however, she and other doctors have always said that it's fine!

I've had a blood test since I started taking L-Tyrosine but this hasn't raised any red flags.

I do take Vit B12 as vegetarian. I take iron sometimes but am always worried about it reacting with the levothyroxine. I feel I need it though.

The difference between how I am when in heat (living with people who maxed the central heating made me almost break down) and in cooler conditions is dramatic though.

shaws profile image
shawsAdministrator in reply to h1atus

The problem is that doctors aren't trained which is an important part of their patients' problems. A dysfunctioning thyroid gland. They've been told only to take notice of the TSH (and I doubt they know one symptom).

50mcg is a starting dose and after six weeks another blood test and a 25mcg incremental increase and so on until we feel well with relief of symptoms but they are apt to stop when the TSH falls in a certain range. That's wrong, it should be until relief of symptoms. Some doctors have written about the Tyranny of the TSH meaning taking only that into account and patients remain unwell with symptoms. If patient still complains they should add some T3 to a slightly reduced T4. A new paper has just been accepted and awarded by one of our scientific team which hopefully enlightens those who don't listen/learn from patients.

healthunlocked.com/thyroidu...

Our metabolism (heating/cooling body etc) isn't working properly as is other vital functions, heart, brain etc when not on sufficient hormones for us independently.

shaws profile image
shawsAdministrator

I was unable to add the excerpt re FT3 and here it is:-

We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340.

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

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